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We are privileged to share blog postings from our Ambassador Jessie Close, Adrienne Gurman, Henry Boy Jenkins, and other guest bloggers.  Please visit regularly as our content will be updated often.

The Power of Diagnosis

Wow. Depression sucks. Before I was put on a lifesaving combination of medications I tried everything to combat my depressions: light boxes, lots of coffee, sun on the backs of my knees, alcohol that just made it all much worse, and I would force myself to take walks which were torture.

Calling all manic-depressives! Personally, I like that term better than bi-polar. But that’s just me. When I tell someone I live with bipolar disorder I wonder if they really know what I’m talking about. When I tell them I live with manic-depression I think that explains it all.

Mania – a period of great excitement, euphoria, delusions and over-activity. Yes. That’s it. And spring brings those symptoms on. Here in Montana spring is extremely unpredictable. Right now it’s gray outside and my energy is low. My energy could be low because it’s evening and I had my 3 year old granddaughter with me for a few hours today, or, more likely, my energy is low because it’s gray outside. If the sun suddenly came out and bathed everything in sparkling spring light my energy would surge. I’d go outside and see what I need to do in the yard or I’d take one or two of my many dogs for a walk around the neighborhood. Then, when the sun is again covered by rain clouds, I will lose my energy immediately. And right now, sitting here in my living room, it just began to rain again. Ugh. And the dogs don’t like it either. I try to remember that just above the clouds the sun is shining and touching the other side of the clouds, making them very white.

The really great part of all this is that I do live with manic-depression but the above symptoms are about as bad as the mania gets these days. I have a good psychiatrist who keeps me level. But no matter how good the medication I still have those moments of mild mania, nothing like I used to have – delusions and euphoria especially.

Depression – feelings of severe despondency and dejection, typically also with feelings of inadequacy and guilt, often accompanied by lack of energy and disturbance of appetite and sleep. Wow. Depression sucks. Before I was put on a lifesaving combination of medications I tried everything to combat my depressions: light boxes, lots of coffee, sun on the backs of my knees, alcohol that just made it all much worse, and I would force myself to take walks which were torture.

I remember going on medication for the first time. I was given anti-depression medication first that began helping but quickly shot me up into mania. Then I was put on anti-mania medication that brought me back down but, not so far down that the anti-depression medication didn’t catch it. And that was the beginning.

Before I found a good psychiatrist I thought my odd and out-of-control behavior was because I drank so much; vodka, gin, wine, rum. My husband-at-the-time and I dragged ourselves to AA and I am now 16 years sober. Alcohol is a problem all by itself and I did myself a huge favor by quitting the drink but it didn’t cure my wild ups and downs.

All it takes for me to realize that medications actually work, is to look back to when those of us mentally ill people were put into asylums, no medication on board. Can you imagine that? I have imagined it and think it was barbarian and cruel; but no one knew anything else. My grandmother was in an asylum several times. She was put into lithium baths that actually did give her some relief from depression.

I take lithium as one of my medications so luckily I don’t have to linger in a bath for relief. Our modern medications are miraculous. If you ever feel like you’re on the wrong meds talk to your doctor. If you don’t have a doctor go to a nurse practitioner. Keep up with your symptoms, chart them. I have done that and found it very helpful, especially when I was just beginning the routine of taking medications or when I had to start something new or make a change. Medical people appreciate charting. In fact it was my first doctor who asked me to chart when I took a medication, date and time.

It’s the next day now and it’s Easter! Now the sun is shining! I went to church and now am going up to my daughter’s house for Easter dinner. I’ll get to see my granddaughter and eat not only the main course but I will be bringing a cake shaped like a rabbit – what more could I ask for??

Please feel free to write me on this BC2M site if you have any questions. Thanks.

 

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Questions

The questions are a puzzle I consider to help keep me right-sized. I need to reach out from behind the illness. That’s where I need strength. That’s where my treatment plan and my phone tree come in. That’s where I discover the answers. Outside myself, where I’m afraid to look. In the eyes of others where the heart speaks volumes.

Sometimes I wonder if my friends and family think of me, and if so, what do they think? They are on my mind every day. I reminisce about time spent together. I think about how their days are now. I miss them. Sometimes I call, but more often than not I worry about interrupting their day. I wish we could get together. Easier when they live nearby, not so easy when they live far away. The thoughts are always there, though. I wonder if it’s a two-way street.

Do they remember who they thought I was before they knew my diagnosis of schizophrenia? Do they understand that I might have trouble connecting because of it? Sometimes I do, and that frustrates me because I miss out. I’m afraid to take the light rail. I’m wary of changing restaurants.

Does the diagnosis alter the way they perceive me? Nothing is different, but everything has changed. I’m still the person they experienced life with, I just have a name now for the things that occasionally set me apart. A word which defines my fears and loneliness, my quirky behavior, my sometimes obtuse communication. Maybe the name itself scares them off. That I could see. After all, there’s a lot of misunderstanding around the term.

Do they get tired of me talking about mental health issues? I wonder if writing my blog shows them how much advocacy means to me. I would hope that they are proud of me for what I can contribute and that they don’t feel awkward about me publishing my thoughts for the world to read. Who am I to them, and how will I ever know?

These are the kinds of questions that run through my mind, questions born of insecurity, self-stigma, and shame. Shame for being mentally ill, for not being normal and fitting in. Shame for not working a nine-to-five job, not having a family, not owning a home. Insecure for the years of listening to voices tell me how to act and what to think about myself and the world around me.

Medication helps to keep my symptoms under control, but they still bleed through when stress rears its ugly head. Anxiety finds a crack in the surface and pushes its way in. The questions follow.

I don’t feel sorry for myself, though. Far from it. I’m proud of the work that I do. When I receive compliments on my writing, I am more appreciative than I have words for. Knowing that, in some way, something I’ve written may have helped another person is enough for me, a form of thanks in and of itself.

Things that seem commonplace to the rest of society can be major achievements for someone living with a mental illness. For example, when I get the laundry done or prepare a meal, I feel accomplished. What others take for granted in their day-to-day living, I feel daunted by and proud to overcome. Sometimes I think that I’d like a little recognition for it, for doing something as trivial as making the bed or scrubbing the tub, but I’m happy just to know that I managed to do it. Self-stigma would tell me I’m not worthy of that pat on the back, that I should just suck it up, that everyone else can do for themselves and that it’s no big deal. But it is. When my symptoms derail my thoughts and actions, it’s a very big deal to be able to overcome those obstacles and accomplish even the most menial of tasks.

Valuing myself isn’t enough. Everyone enjoys some recognition. I’m no different. Except that what I need to do to get to the finish line might, on the occasion, require more of me than it would a normal person. I’ve accepted this conundrum even though it annoys me. Sometimes I feel like a complete fool, going about my apartment doing my chores and feeling somehow special for completing them. Maybe I’m the one who needs to see myself differently. I know I’m more than just the talkative friend or the absent-minded brother, but when I think of myself I see myself through what I imagine are the eyes of the people that I love, and I hope they see a person accepting his challenges head-on. Because that’s the truth.

The questions are a puzzle I consider to help keep me right-sized. I need to reach out from behind the illness. That’s where I need strength. That’s where my treatment plan and my phone tree come in. That’s where I discover the answers. Outside myself, where I’m afraid to look. In the eyes of others where the heart speaks volumes.

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Stay Open to What the Universe Provides!

I believe that the key to either receiving or delivering these life-changing moments is to be open, and open wide, to the universe providing in this fashion.

As Monty Python would always say, “And, now, for something completely different…” I wish to share a brief experience I had while traveling in February back to the east coast.

I arrived at the Newark International Airport on the evening of Wednesday, February 22nd, without any fanfare whatsoever. It was a smooth flight and my only regret was that my trip had me flying out bright and early from Sacramento on our son’s 23rd birthday. Granted, we had celebrated earlier and, also granted, he’s not a little boy anymore, but it just wasn’t ideal. I exited the plane and made a beeline for the men’s restroom (long flight, middle seat – enough said!).

When I went to the sink to wash my face and hands, I noticed the gentleman at the sink to my left was wearing a Cal Berkeley t-shirt. Since I’m so terribly shy and, even more, so terribly sarcastic… (LOL) I decided to strike up some small talk with him. I told him that I had just been in Berkeley only 2 nights earlier seeing a musical concert at the newly renovated UC Theater on University Avenue. He said that he went there a ton as a kid growing up there for over 20 years, and now lives in New Jersey for over 30 years. I said to him, “That’s too funny. I was born in NYC and lived between there and New Jersey for over 20 years and have now lived in California for over 30 years!” I introduced myself as Marc with a “c”, and he laughed and replied by informing me that his name, too, was Mark, but with a “k”. We both stopped and laughed aloud at that coincidence. If that wasn’t enough, I then told him that I was a clinical social worker who had retired from Napa State Hospital last year. He then really shocked me when he told me that he is a social worker too and was actively employed at a residential treatment center in NJ. We were truly blown away by the parallels, and I remember even referencing the Lincoln / Kennedy connection, although that one is beyond belief.

I shared that my brother had dealt with Schizophrenia from an early onset at age 14 in 1972 and that he had spent a number of years of his life housed at Greystone Park Psychiatric Hospital in Morristown, NJ. I know that I told him that, through my “teenage eyes”, I thought those were fairly horrific times in the delivery of psychiatric care given the custodial treatment and antiquated medications available at the time – not only in NJ, but around the country still. It felt very sterile, from my memories, and seriously institutional. I said, “One Flew Over the Cuckoo’s Nest minus Nurse Ratched,” but not much better. I told him that I gathered up the internal steam last year during my annual trip, and braced myself to drive up and see the old Roman gothic inspired hospital! I arrived to learn that it had been razed to the ground and replaced with a much more modern set of buildings and well-groomed landscaping. I had gone inside and actually spoke to a few hospital staff including security who left me with such a positive feeling regarding the type of treatment that is now being delivered today at their psychiatric facility. It was very similar to my experience over the years at Napa State Hospital from 1991 forward.

He really surprised me at the next moment. He shared with me that he was actually there the day Greystone Park was torn down and even had a photograph on his phone. I stood there, in the bathroom… Still. I gave him my cell number and, within seconds, I had this photo on my phone as well. We parted ways, but not before Mark told me that he planned to send me more photos that he had contained on his personal laptop at home. This occurred recently, and with much appreciation. We have been conversing somewhat now.

A week later, after my airport encounter, I stopped in at the Hibernia Diner, by my old house in Rockaway, NJ. I was chatting with the fairly new owner about all of the decades that I had eaten incredible food there. When I went to pay for my corned beef sandwich, onion rings, and butternut squash soup (yummm), the woman at the register had overheard my letting the owner know I am a psychiatric social worker and that my brother had been at Greystone Park Psychiatric Hospital during my younger years having suffered from a debilitating mental illness. She told me that her daughter is a photojournalist and had actually done a one-hour piece on this hospital and that there is aerial footage via a drone helicopter recording the day it was torn down. It led me to research many YouTube videos; many that were quite difficult to watch and some that were cathartic for me.

The point of sharing these chance encounters, and ever so brief moments in time, and in life actually, is to remind myself and, hopefully, to inspire others that the universe truly works in mysterious ways. I believe that the key to either receiving or delivering these life-changing moments is to be open, and open wide, to the universe providing in this fashion. Initiating a brief hello in a bathroom and chitchat at a diner can yield one greater rewards than one could imagine, and / or provide the other with something similar, in turn. Putting out positive vibrations, taking some emotional risks might lead you to the world of unknowns and surprise revelations. One never knows, does one?

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Suicide Is A Word

It always amazes me. In a world where so many discussions are becoming more open, there is one that is still hidden behind closed doors. We are willing to discuss different sexualities, genders, cultures, and religions; yet, when someone says the word suicide, the room becomes silent and the topic is quickly changed. However, it is a topic that needs a platform to be discussed on.

It always amazes me. In a world where so many discussions are becoming more open, there is one that is still hidden behind closed doors. We are willing to discuss different sexualities, genders, cultures, and religions; yet, when someone says the word suicide, the room becomes silent and the topic is quickly changed. However, it is a topic that needs a platform to be discussed on. It is the tenth leading cause of death in the United States alone. When people get tenth place in a competition, their name gets listed. But, when suicide is top ten for causes of death, the topic gets tucked under the sheets. A perfect example of this is the recent loss of the Amy Bleuel, the amazing young lady who founded Project Semicolon. I went to news outlets to read about this, but it took quite a few websites before I found out the cause of her death was suicide. In one post on Instagram, I came upon a question brought forth by someone that stated, “Why do some people kill themselves even when they are having a good life? Can somebody answer this for me as I just never understood the reason.” The proverbial question.

As a suicide attempt survivor, I was drawn to opening this conversation to help others understand and to perhaps educate the public. You see I was like most people, as a child I would catch bugs and run around all day with a mind full of dreams. It was simple. We would take family vacations to the lake, where I would climb rocks and hum tunes (most often the Star Wars theme song). I was free. Never during those years did I think about a future where I would be raped and then have to fight the battle against PTSD and depression for years to come. However, that is where my journey took me. My innocent mind and free thoughts turned into darkness and pain. As a survivor of those years I feel it is important to discuss my journey because I have no shame in the roads I have travelled, for they created the strong woman I am today. The one who can speak openly, help educate, and reach out to others to let them know they are never alone.

“Why do people kill themselves even when they are having a good life?”A question so many ask. For a moment, let us look at mental health diseases as just that, diseases. I have chronic hypertension I take medicine for daily. This is a disease. Although I run daily and take good care of myself, the disease is part of my genetic make-up. Mental health diseases are much the same. For some it is a chronic disease that requires a lifetime of medicine and for others, like myself, only a specific period requires counseling and medicine. People can have “good lives”, yet still live with a disease. I had a family who supported and loved me after my rape. They held me up for many years. To some my life on the outside would have looked “good”. Inside my mind, however, there was darkness. I could not see the “good”. I only saw a weak and ugly person, one that just dragged the people around her down. No matter how many times people told me they loved me and how beautiful or smart I was, the darkness inside my mind tortured me with words like slut or worthless. PTSD and depression were my disease. Like any disease, we tried different medications and various treatments. Just like any disease you do not just “pop a pill” and immediately feel better. During all of this the darkness tortured me and my feelings of worthlessness grew. I felt like a burden to those around me. A burden that did not need to exist. Was my life good? Perhaps yes, but the darkness would not let me see it. This led to suicide attempts. I did not want to be a burden. I wanted the people around me to have “good lives”. Mental health diseases engulf the mind with distorted thoughts, just as diabetes distorts insulin and sugar levels. During that time in my life my thoughts were distorted. I could not see past the darkness.

I am a survivor. I made it out of the darkness. Some people do not. For this reason, we need to be able to say the word suicide and need to stop hiding mental illness discussions behind closed doors. All of these marches and platforms we are seeing open up. So many topics that were once kept quiet, yet we are still unable to say the word suicide. Why? We need to pull down the cloud that surrounds mental illness and stop viewing suicide as a dirty word. How many lives could we save if we would stop the stigma and open the doors?

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A Matter of Time

Tearing up during a cinematic fairy tale was the last thing I expected to happen, but it did, and I’m grateful. I feel complete knowing that my tear ducts work for more than just adjustment to the wind. The windows to my soul can rinse themselves clean, refresh my heart, and allow me to feel an added dimension to my emotional flow.

Fourteen months without shedding a tear, exactly the amount of time I’ve been on medication. Correlation? I believe so. I’m taking fairly high doses. Save for the occasional uptick in symptoms, nothing breaks out or gets in. I’m calm. Flat. But not empty.

I just finished watching a movie that not only drew me in completely, but also resulted in helping my first tears in over a year find their way to my face and down my cheeks. A story about the loss of a child and how the parent dealt with it. A fable about acceptance and how hard we resist the truth.

I like to spend a rainy day watching “people” movies, movies about the experiences that tie us together. I’d lost touch with those things as I struggled with mental illness, the wheels off, no measure of how far the meter got pegged for sorrow, pain, or joy. The last time I felt anything remotely emotional I was in restraints, chained to a hospital bed, awaiting placement in a psych ward. Tears flowed as I reacted to life through the lens of schizophrenia. I was a wounded animal who had, only hours prior, attempted suicide for the sadness inherent in my psychosis. I did my best to touch base with the friends who had seen to it that I follow through with my voluntary admission. There were no smiles. There was no laughter. It was not a comedy, it was a real life drama. Melpomene weeping at the hand I’d been dealt, down the lonely corridors of the hospital, to the beds with the restraints and the realization that I was not going to come back to reality on my own.

Two weeks later, armed with a prescription and a handful of paperwork, I pushed my way into the light of life, hoping against odds for a positive outcome, and, surprisingly, I found one. Despite the side effects which presented early on in treatment, I felt a newness, a fresh sense of self. I didn’t feel normal to the life I’d known, but to a different normal, a more objective view. Not stoic or repressed, but clear and focused. I felt better. The voices were missing. The fear was gone. The depression and anxiety were replaced with serenity. I found that I could concentrate. I was capable of linear thought for what felt like the first time in my life, perhaps because it was. I could laugh. I could participate. I could follow a conversation as easily as start one. What I couldn’t do was cry. That one, simple, emotional release was off the menu, and I was aware of it. It hurt in a way that was new to me. I had to have an answer.

I talked about it with my therapist. I discussed it with my doctor. All roads led to the same conclusion: it was a natural side effect of my being medicated. I felt like a part of me had been cut away, and I was willing to let it be for the tradeoff of a better life otherwise. A small thing, really. Trivial. Not being able to show depth of feeling in that way would simply be something I would have to get used to, like the trembling of my hands, or the extra pounds I’d put on. The axiom of childhood had come to pass—“big boys don’t cry”—and the poet in me reluctantly accepted it.

In therapy, I’ve been participating in EMDR (Eye Movement Desensitization and Reprocessing) to re-map my sense of attachment and work through some trauma related issues. I’m focusing on getting past the roadblocks to health that have been in my way since childhood. Tearing up during a cinematic fairy tale was the last thing I expected to happen, but it did, and I’m grateful. I feel complete knowing that my tear ducts work for more than just adjustment to the wind. The windows to my soul can rinse themselves clean, refresh my heart, and allow me to feel an added dimension to my emotional flow.

I consider this to be significant. After a year-plus of feeling blunted in that area of response, I feel healthier. It’s not a major breakthrough to anyone but me, but I feel reconnected now that I can cry. I can respond to another facet of myself, which means that reduced affect is likely lessening, and that can only be a good thing. Especially for me, as I love a richness of experience, a certain quality of life. I thought the medications had taken away an essential part of me. They hadn’t. It was only a matter of time.

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The Weight of It All

Try to remember that your value is not contingent on how you look and your worth is not measured on the scale. Most of us have survived some pretty horrible stuff. I think if we can live through that, we can crush this.

I was diagnosed with bipolar disorder 8 years ago. Since then, I have gained a grand total of 80 lbs. 80 lbs is a pretty big number and it still feels a bit unreal to me. How could I have let that happen? It was actually pretty easy. The weight gain didn’t happen all at once. It crept on, a few pounds a year, eventually adding up. On good days, when I feel like my old self, I’m almost startled when I pass a mirror. I forget that this is who I’ve become. It’s no wonder I feel this way. Everything in our society is built to perpetuate a certain beauty standard. From the size of the seats on an airplane to the size of models on the runway, we’re told that thin is better. Watch television for just an hour and you’ll see that beauty is the most important commodity. Are your teeth white enough? Are you ready to jump start your summer body with a per-packaged diet meal? Do you have acne? Frizzie hair? Wrinkles around your eyes? If so, buy, buy, buy these products and then you’ll look better. And if you look better, you’ll feel better. This is the lie we are told. Eventually, this is the lie we tell ourselves.

There are so many reasons why I have gained the weight. Firstly, there are the medications. Scientific America reported that, according to a 2014 review of eight different studies, as many as 55 percent of patients who take modern anti-psychotics experience weight gain. This is believed to be a side effect caused by a disruption of the chemical signals controlling appetite. Many of us are prescribed (off-label) these same anti-psychotics to treat other conditions, like depression, bipolar disorder, OCD, and post-traumatic stress disorder. There is also a pretty substantial connection between antidepressants and weight gain, although little is known about the cause. Some research say antidepressants cause weight gain. Some say that weight gain causes depression. It’s the old chicken or the egg question. Which came first? I’m not altogether certain it really matters how you got there, once you’ve gained the weight.

I would not begin to blame my weight gain solely on the medication. I know that there are so many other reasons. Firstly, since my diagnosis, I live a far more sedentary lifestyle. I stay in instead of going out. I isolate myself from friends. I live in my pajamas. I often choose taking a nap over going for a walk because the day is just too bright. If I can’t get out of bed, how in the world can I go to the gym? Secondly, I eat my feelings. Food can be an incredible source of comfort. When I feel empty, I try to fill the hollow space with food. I celebrate feeling good with a home-cooked meal. I drown my sorrows in a bowl of Fruit Loops. Did something bad happen on the news today? Well, shove it down and put a piece of pie on top of it. Afterwards, I feel really guilty and swear I’ll make better choices. I don’t make better choices, or at least not for long, and then I feel guilty again. It’s incredibly hard to admit that this is where I am: feeling un-pretty, guilty and embarrassed. This is the shame cycle that leads to more failure, not better choices.

Over the last few weeks, I’ve read quite a few articles about fighting the weight gain associated with mental illness and psychiatric drugs. There are a few recurring tips and I have to admit, they make sense. (1) Don’t start a “diet!” Begin by putting smaller portions on your plate. (2) Make healthier food choices when that option is available. (3) On the days when you can, go for a walk. Those days will add up. (4) Slow down and be mindful of when and why you are eating. (5) Most importantly, keep a schedule to avoid late night binges. These are all important tools to use when I am struggling with my weight but after putting a few of them into practice, I’ve also come away with a few thoughts of my own. Here goes: (1) Set realistic goals. You’re a person, not a machine. (2) Don’t beat yourself up when you fail. Life is about balance. (3) Don’t say mean things to yourself. Negative self-talk can be a killer. (4) Finally, for the love of God, ignore those awful television commercials Try to remember that your value is not contingent on how you look and your worth is not measured on the scale. Most of us have survived some pretty horrible stuff. I think if we can live through that, we can crush this.

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The Power of Humiliation

I wonder if those who disparage mental illness know they are being mean? And stupid. And ignorant. Or are they just afraid and building a wall to protect themselves from… What? Us?

I’ve been dragging my feet about writing on this topic, even though I was the one to suggest it. The inner depths of me have been scarred by humiliation. This is the one, the noun that causes me to shrink, gives me pain in my center. To humiliate; a verb, to make someone feel foolish and ashamed. Humiliation; a noun, the action of humiliating someone or the state of being humiliated.

I remember how, many many years ago, I humiliated someone. We were in 4th or 5th grade and she couldn’t hold her urine for whatever medical reason. She tried to join in with a small group of girls, but I told her she couldn’t join us. She asked why, and I told her that she smelled. How was I able to be so cruel? I knew right away that I had crossed a line, that I was a bad person for being so mean. The act of humiliation also humiliated me.

I wonder if those who disparage mental illness know they are being mean? And stupid. And ignorant. Or are they just afraid and building a wall to protect themselves from… What? Us?

A carpet cleaning guy came to my home today. It wasn’t until he was about to leave that we discovered we were both recovering alcoholics. He has 21 years sober, I have 16. We had a good conversation about being sober and how difficult it can be sometimes. I thought about letting him know that I also live with bipolar disorder, that those of us who have mental illness are so very prone to addiction. But my stomach dropped and my mouth went dry. I felt the sharp nudge of self-imposed humiliation. This response is my own, my own scary box that locks me in without notice.

Sometimes, I’m completely open to speaking about my mental illness. Sometimes, I’m not. Sometimes, I feel naked and judged. Sometimes, I don’t. Feeling comfortable in a situation is a must to keep fear and humiliation away.

Humiliation is a sinking feeling – a strong, physical feeling that leaves us with hot faces and rubber legs. Humiliation also makes us want to get away from the humiliating situation as fast as possible. And we do, sometimes leaving whomever we’re with wondering why we left. Humiliation isn’t contagious, like laughter; it’s more like a jail cell, the door clanging shut on us.

How to battle humiliation? I’m not particularly the one to answer that question, but I will say that being happy helps enormously. To be happy, I strive to keep my life manageable. I’m strict about taking my medications at the same time every day. I communicate with friends. I try to avoid stress (hahaha), and try to be good about exercise (hahahaha). Wearing armor, I think, is a good way to avoid the pitfalls associated with humiliation. Invisible armor protects us not only from self-bashing, but from those around us who have little or no sensitivity to mental illness. This sounds a bit corny, but what the heck:  Our armor is love. Love of self, love of others in the same predicament as you, love of family. If your family is unsupportive, then love of friends who understand. When I know I’m supported, humiliation doesn’t get to me as much. When I feel good about myself, the pitfall of humiliation doesn’t hit as deeply as it can.

For those of us who live with mental illness, we need to forgive ourselves. And, forgiveness comes from love. With love and forgiveness, humiliation can take a back seat.

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The Prison of Shame by Muyoka Mwarabu

I went to the therapy sessions with a new determination. I allowed myself to let the feeling of shame that was buried deep, bubble up the surface, and fully experience it. I recalled the people and early experiences that had impacted my self-perception. The therapist compared mental health issues to having diabetes, when I thought of it like that, it didn’t seem as life-defining.

There’s nothing more interesting than unique brains getting together to converse. When I joined a mental health support group, I basked in the calm peaceful environment, got to laugh at the hilariousness of everyday life, and saw my struggles reflected in others. One memory stands out. There were five of us sitting in a circle. There was a new guy, wrinkles, plaid shirt, wearing shorts in the fall. He had mud on his shoes and callouses on his hand from a lifetime outdoors. He told us his story. “When I was five. I was sitting in the hallway and my grandmother caught me staring off into space, she said I hope you are not talking to yourself, that would make you crazy”. He went on with his story, but I couldn’t forget the beginning. He now sat in front of me, decades later with his shoulders hunched. Shame.

I went home and looked up his condition. Confirmed, it was not his fault. The next week I brought the textbook excited to let him know the good news. It was not his fault. I showed him the page. He smiled, he was familiar with his own condition. I had come to free him from his prison of shame, I thought I had the key, but in my eagerness, had not taken a closer look at the door. There was no lock on the door. Splendid. There was no way anyone would want to stay here, and no way anyone deserved to be here. I sat down next to him on the bench and he was no longer an old man but a five-year-old boy, with fresh mud on his knees, he leaned in and told me, “My grandmother told me to stay here”. The textbook was useless. His grandma was the one who had drawn his baths after days of playing in the field. He loved his grandma so much, he had stayed where she had instructed for 40 years. I reached in to hug him and as I leaned in, I realized my shoulders were hunched. I looked down at my outfit and I was not an angel with wings, I had an orange jumpsuit with numbers across the front. I was a prisoner too. How long had I been here? Today wasn’t the day my friend was breaking out, it was my day.

I remembered what I wanted to tell my friend, it wasn’t his fault, he was a fascinating, fun person and it was time to bounce out of this prison ASAP. I went to the therapy sessions with a new determination. I allowed myself to let the feeling of shame that was buried deep, bubble up the surface, and fully experience it. I recalled the people and early experiences that had impacted my self-perception. The therapist compared mental health issues to having diabetes, when I thought of it like that, it didn’t seem as life-defining. I began to open-up to close friends and receive more reassurance, and reminders of positive characteristics and past accomplishments I had. I made a conscience effort to lift my shoulders. I was on a mission. One day I was going back to tell my friends the truth: It’s not your fault, you’re a fascinating fun person and it’s time to bounce out of this prison ASAP.

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Pause

When I’m in my hospital togs I feel connected to those days when I stayed in the wing with ten other patients, each battling their own demons, each stronger because of it. For many of us, the common denominator was suicide. So much sorrow in one room could prove cathartic once the sharing began. The stories would start and the faces would change from withdrawn and sullen to hopeful and brave.

As a writer, I get to spend a lot of time in what I call my “soft clothes”— basically my sweats or PJs. When I’m feeling particularly contemplative, I put on the hoodie and pajama bottoms that I wore in the hospital. The drawstring’s been removed from the hoodie, as per instructions on the ward, being that I was suicidal at the time and the string could be seen as a weapon to use against myself. When I got home after being discharged, I removed all the drawstrings from each of my hoodies as a sign to myself that I wanted to be safe. Something symbolic. A way to remind myself that I’m still here and my story’s not over. Some people might get a tattoo of a semicolon, which is cool. I found the significance of the drawstring removal to work for me.

When I’m in my hospital togs I feel connected to those days when I stayed in the wing with ten other patients, each battling their own demons, each stronger because of it. For many of us, the common denominator was suicide. So much sorrow in one room could prove cathartic once the sharing began. The stories would start and the faces would change from withdrawn and sullen to hopeful and brave. Maintaining that quality was hard once group was over, but I tried in earnest to keep the faith, to believe that life was worth it somehow. Seeing hope on the faces of the other patients was infectious. I couldn’t help but feel optimistic, too.

Anything that I could possibly hurt myself with had been removed from my reach. Shoelaces and dental floss. Keys and fingernail clippers. My belt and bathrobe tie. In a monastic sense, reducing my possessions to their safest level offered comfort of a sort, a vacation from the preoccupation with self harm and worse. I never felt any authority imposed upon me, even in my paranoid state. This was for my own good, and, considering that I had tried to kill myself, I obviously didn’t have a firm grasp on what was or was not good for me. I was more than happy to comply.

Pencils were kept at the nurse’s station for when we needed to fill out our menu requests. Craft supplies were kept to the day room, and their use supervised by the staff. Here at home I have a wireless keyboard and mouse. My kitchen is only a few feet away, and I have the customary utensils, including a butcher’s block with a half-dozen knives in it. I am cautious when I use them. There was a time when contemplating other uses for the knives was foremost in my mind. Thankfully, those days are behind me. My medications help with that. I was initially reluctant to take them, believing that I was strong enough to combat mental illness alone. I realize today that, without the chems, I’d be vulnerable to attack from myself. That’s a hard thought to accept, that I could be my own worst enemy, but an unstable mind on a one-way course is a powerful foe.

I am grateful for my team of friends and my therapist who helped see me through that dark episode. We’d come up with a plan in the event that I would experience a schizophrenic break and might not come back on my own. Through their efforts, I wound up hospitalized and safe. I owe it to them to keep up my end of the bargain today and share my story at every opportunity. A psychotic break and a suicide attempt combined to cloak my world in desperation and despair. I’m alive and stable today and more willing than ever to openly advocate for a stigma-free world. It’s not just soft clothes and a wireless mouse. I take the time to talk with anyone willing to listen when the topic of mental health comes up. I share my story honestly and from the heart, and people listen. Because it’s time to listen, to speak, and to act. Our social worlds need to expand to include those dealing with undiagnosed disorders. Our medical system needs all the help it can get if it’s going to be there for us when we need it the most. There is so much work to be done, and who better to do it than the people closest to it? Clients, caregivers, friends, and family all.

I put on my hoodie and I pause to remember why it’s stringless. There is something that each of us does to remind ourselves of the times when things were dark and we needed illumination. Find that light and keep to it. You’re worth it. Pause and reflect. No matter where you are on your personal timeline, your story’s just beginning.

 

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Love is not enough.

Love has kept me alive, on some level, surviving. The kind words and warm hugs and genuine concern from people that love me has kept me holding on by a string all these years. I can imagine that without multiple interjections at just the right moment, I wouldn’t be here. But unfortunately, love from others hasn’t been a strong enough power to make me want to thrive. It wasn't until I had tools that I could master and manipulate that I began to want to try a little bit harder to do more than survive. Before, I just stuck around for the people that love me, feeling obligated to stay alive to thank them for their unwavering love. I figured I didn’t want to disappoint them anymore, so I would try each day to continue. But now, I get up for me. That doesn’t mean I don’t love and live for my family and loved ones too. But for once, I live for me as well.

As I strive to raise my daughter the best I can, I am beginning to realize that love is not enough. If I could will her a wonderful life with my love alone, I would. Her mother and I have had a gradual awareness that has reached a peak as our little one is turning 5 years old, full of curiosity and an emerging personality. But no matter how much we love her, we still need to give her more.

If love was enough, there wouldn’t be distraught parents all over the world crumbling and defeated when their child self-destructs from the onset or persistence of a mental illness. If love was enough, I never would have contemplated taking my own life, over and over again as the waves of despair have crashed over my life unpredictably. And if love were enough, we wouldn’t need any other tools like patience, knowledge, and determination. But love is not enough.

Love has kept me alive, on some level, surviving. The kind words and warm hugs and genuine concern from people that love me has kept me holding on by a string all these years. I can imagine that without multiple interjections at just the right moment, I wouldn’t be here. But unfortunately, love from others hasn’t been a strong enough power to make me want to thrive. It wasn’t until I had tools that I could master and manipulate that I began to want to try a little bit harder to do more than survive. Before, I just stuck around for the people that love me, feeling obligated to stay alive to thank them for their unwavering love. I figured I didn’t want to disappoint them anymore, so I would try each day to continue. But now, I get up for me. That doesn’t mean I don’t love and live for my family and loved ones too. But for once, I live for me as well.

Love from others can only get you so far with a mental illness, that is, in my own experience. Sometimes no matter how much people love us and believe in us, we still don’t want to or can’t love and help ourselves. And sometimes, I’m not sure who it is harder on: me or the people who attempt to love me unconditionally. I actually find it hard to believe that anybody loves me unconditionally. And honestly, I don’t blame them. I am difficult. I can just barely begin to love myself.

These tools, though, that I have picked up fit perfectly into my quirky illness and its intricacies. Obsessed with systems and organization and regimens, it was physical tools that allowed me to help myself. Sleep, exercise, routine, diet and meditation. These were things that only I could control. And every day, I truly get up only to attempt to master each one of them a little more than the day before. After a couple years, these tools have given me a reason to live and over time, have collectively worked together to make my illness more manageable.

Imagine controlling the factors that add to your disease. If you could master these factors to eliminate their negative influence on your disease, wouldn’t you be intrigued? For example, the tool of exercise. It may not be considered a traditional tool by any definition, but it is a tool for me. I know that when I exercise one to two full hours every day, I feel better. That doesn’t mean my moods don’t still come and go. It means that by utilizing this tool every day, I know that my physical body is at its best and can no longer be a negative influence on my disorder. I know that whatever fluctuations come and go with my moods, it is not because of the lack of exercise or physical self-care.

This tool alone doesn’t allow me to master or ease the afflictions. But when I add in the tool of nutrition, and only put healthy, whole foods in my body with medicinal attributes, its adds in another layer of protection. Add in a clean and sober lifestyle, a systematic daily routine, a healthy amount of sleep each night and a constant mindfulness throughout the day; I have essentially controlled the factors that weigh heavy on my bipolar disorder. There are absolutely days where I fail to use one tool or another. And the best part about that is I can feel the difference. If I don’t exercise at all for two or three days, I can feel the heavy weight in my body which leads to a heavy weight in my mind. Which quickly steers me back into using that tool. In essence, it is like a checks and balances system for my body and mind.

I love my tools. Without them, I feel helpless over my life like I have most of my days. Until recently, I have felt powerless over my own disease. I have felt sorry for myself and sorry for those that have attempted to lift my burden with little success. But now I can confidently say that I play a part in my disease by continuing to master these tools. Which in turn, has made it easier for my loved ones to love me and for me to see worth in myself.

As for my daughter whom I love, I also make sure to remain mindful of the tools I can give her now that she will be able to use as she continues to grow. I now know that I cannot control her life with the power of my love. I cannot predict or dictate her future with my unwavering love for her. But with my love for her and my love for myself, I can give her new tools every day that she will in turn be able to use throughout her life to master her own fate. She will be able to conquer problems with solutions instead of defeat. She will be able to empower herself with action to make life decisions. So I continue to love myself so that she can love herself too.

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My Broken Mind, Part II: Mending

I’m coming to terms with my mental illness, step by step. My fractured mind will always be so, and I understand that now. The choice to be gentle with it, to nurture it and treat it with respect, is what I can do if I want a new normal that works for me.

In my last blog I was questioning what appeared to be an uptick in my symptoms. I was concerned about residual schizophrenia or worse, a relapse. After visiting with my psychiatrist and having an open and frank discussion with him, I came away with a clearer understanding of what’s going on, what the meds can and can’t do, and a glimpse into my future for good measure. A year with the chems as a part of my treatment plan, and I’m still a newbie. Better to be fresh and learning than cynical and jaded. I’m in this for the long haul. I like being able to take care of myself.

The good news is that my dosages stay the same, which is fine by me. I really didn’t want to increase them. Sometimes my body and brain feel a tad slogged down by the medications. I enjoy the days when I don’t notice them working. There’s a sense of freedom there. An awareness. Much preferred over the clouded days filled with whispers, threats, and paranoia. Replacing that lonely world with one filled with hope is all new to me as of this past year, and I am grateful for it. I just had no clue that things could be better. I thought that I would be white-knuckling it through episode after episode for the rest of my life, wearing out friendships and losing reality.

While I waited for my bus to the clinic I watched a man come up the sidewalk, muttering—a disheveled, broken person, seemingly lost in conversation with no one but himself. He dug through the trash can and found a half empty coffee cup, popped the lid, and sat down on the park bench to drink it, legs crossed, pinkie up, like a real gentleman. He spied a cigarette butt near his feet, picked it up, and lit it. He continued talking and gesturing to his imaginary friend until his coffee break was over. He stubbed out his smoke and wandered up the street.

I was that man once not long ago. I talked with invisible guests. I dug through the garbage. I affected a life that I thought reflected the trappings of a normal person. Not to the degree that this morning’s traveller exhibited, or so I tell myself, but kindred spirits nonetheless. Same coin, different sides of the street. One stumbling through psychosis, the other riding towards hope. In my past he would have been a projection of myself, a spirit, a composite of all of my difficulties cobbled together to form an entity I could hang a notion on when the hallucinations started. Today, my heart just went out to him. I knew the world he was in, I share that world with him. My prayer was that he could find his way out from under and seek the kind of help that I’m currently receiving.

The medications help to manage my delusions and hallucinations, aid in organizing my scattered thoughts, and keep a lid on my agitation. Manage, not eliminate. The symptoms will always be there behind the meds. When they’re working I won’t experience the paranoid delusions, I won’t hear the voices, I won’t misinterpret reality. Under stress, the symptoms may leak through briefly. I have my therapist, my psychiatrist, and my case manager to talk about these upticks with when they occur, just as I used to before medication. I have my two best friends to check in with. Keeping my support network close and informed is to my advantage.

What the medicine won’t help with is my reduced affect, alogia, or avolition. The negative symptoms are here to stay, but with the positive symptoms in check they’re easier to manage. I don’t feel as overwhelmed. I can keep things in perspective. I’m not conversing in disorganized speech. I’m a little slow on the uptake, but not so much that I can’t stay in the conversation. Get me talking and I’m good to go. I can make sense. I can get past my shyness. I can contribute to the stream of life. Because I’m not battling demons. Literally. They aren’t there on those days when the medicine and my body are in harmony.

So it’s a matter of dealing with schizophrenia through this treatment plan of drugs and talk therapy, of maintaining a healthy diet and exercise, and of staying plugged in to the things that bring me joy. I like to watch the Marvel superhero movies. I love a good romantic comedy. I enjoy the occasional coffee date, as well as my weekly breakfasts out with friends.

I’m coming to terms with my mental illness, step by step. My fractured mind will always be so, and I understand that now. The choice to be gentle with it, to nurture it and treat it with respect, is what I can do if I want a new normal that works for me.

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The Black Hole

Last Tuesday, I sat on my psychiatrist's couch and explained everything. I told him all there is to tell and he said what he has said so many times before, “Begin again.” That's the exciting, daunting, stupid, fantastic news. When this happens, no matter how you got here, the only thing to do is begin again. This treatment plan, Begin Again, can feel insultingly oversimplified, but it is the truest thing I've learned about my illness.

I’ve written a number of blogs over the last several months and in each one I’ve written with such certainty: certainty that mental illness can be successfully managed with the right medications and the proper psychiatric care, certainty that a solid support system can go a long way towards fostering wellness, certainty that shame has no place in my life, certainty that a willingness to change old patterns and behaviors is the first step towards managing mental illness, and certainty that if I hold tight to these practices, I can attain a level of stability that will sustain me through difficult times. I’ve written all of these things because I know them to be absolutely true, yet as I sit and write today, I find myself in one of the darkest bouts of depression I have ever faced.

That’s the thing, isn’t it? That’s the thing that’s so easy to forget. There is no finish line. Our relationship to our mental health is not a finite one. There simply isn’t a beginning and an end. I know this. I talk about this. I live my life, holding this truth as a hard fought lesson. Things will changes and, like it or not, we will change with them. That is simply the nature of mental illness. We roll with the punches. Yet – even after all my planning, even knowing all that I know, even with all the safety nets I have put in place – I find myself sitting at my kitchen table at 5:00 am., smoking cigarettes and drinking coffee, thinking about exactly how I came to be here. Much to my surprise, even with all I’ve done to protect myself, I am teetering on the edge of the black hole of depression.

I understand that this kind of change can be organic, situational or both. In my case, I believe it is both. A catalyst nudged me towards my predisposed state. A change in insurance led to the need for a whole new medication cocktail. Titrating off and then on medication left a tiny crack for the darkness to creep in. In that vulnerable place, I followed all my routines but I forgot one major component of good mental health: self care. I sat in front of my television and watched 24/7 coverage of the election and the beginning of the first 100 days. Feeling a need to stay informed, I filled my head with as many facts as it would hold. I submerged myself in politics. I did not, however, anticipate to what degree I would be affected by what I was watching. Politics aside, the world news is not a compassionate forum for the exchange of ideas. It is raw information, often subjective, coming at you hard and fast. I tried to find some encouragement and comfort in the voices I heard, speaking, singing, and shouting my truth but by then, it was too late. I was already falling and could not regain my footing.

Depression is a strange creature. For me, sadness doesn’t accurately describe my depression. Sadness implies that there is the presence of something. In my experience, depression feels like the absence of something. Depression doesn’t fill my chest, it empties it. The hollowness left behind can be soul crushing. Over the last several weeks, I have continued to see both my psychiatrist and my therapist but beyond that, I have fallen into many of my old patterns. I sleep away much of my day. Ordinary routines as simple as showering and brushing my teeth have sometimes been insurmountable tasks. Most days, I don’t get dressed. I sleep on top of my bedspread. I sit in silence for hours. My head hurts, skin hurts, my entire body feels the ache.

In this moment, I’m quite fragile. This bout of depression has reminded me just how unsafe the world can feel when my illness is out of balance. I also know exactly where all of this leads, if left unchecked. It leads deep inside the black hole of depression, and the deeper you go, the harder it is to climb out. Because I understand this, last Tuesday, I sat on my psychiatrist’s couch and explained everything. I told him all there is to tell and he said what he has said so many times before, “Begin again.” That’s the exciting, daunting, stupid, fantastic news. When this happens, no matter how you got here, the only thing to do is begin again. This treatment plan, Begin Again, can feel insultingly oversimplified, but it is the truest thing I’ve learned about my illness. Ask for help, keep your appointments, take your meds, avoid your triggers, but for heaven’s sake, don’t forget to practice self-care. Do the things you know with certainty to be healthy but be kind to yourself in the process, in whatever form that may take. You can go for a run or you can eat a piece of pie for breakfast. You can take a nap or you can call a friend. You can watch a rerun of Law & Order or you can embrace the silence. Your list may look quite different from mine but don’t forget that self care is an integral part of wellness. In a few days, I’ll see my psychiatrist again, to chart my progress. Until then, I think I’ll have a piece of pie and watch the sunrise.

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People Do Not Like Me

I am not ashamed of my past journeys with mental illness or the paths it took me on. I am grateful to those who stood by me and believed in me. To those I brought pain and pushed away, I am sorry. In the end, we are all on this journey through life together. Let us start holding hands and learning from one another. Let us stop the stigma.

It has been awhile since I have had the time to write a piece for Bring Change 2 Mind. My journey, as of recently, has taken me to a new area of my profession. I am now a nurse practitioner, an opportunity for which I am grateful as it enables me to play an even bigger role beside my patients. However, this growth would not have been possible had it not been for the events of my past molding me and helping me to understand my strengths and my weaknesses.

I call this piece “People Do Not Like Me” because for those of us who have traveled, or are traveling, with a mental illness we know all too well the effect it has on those around us. When I walked in the shoes of PTSD and major depression years ago I was a brilliant actress and expert at pushing people away.   Back then I hated myself and felt it would be better if people did not have to come into my life and struggle with me. I did not want people to see my tears or self-hatred. My weaknesses and pain were not to be other people’s burden, they only belonged to me. So, I became an expert at putting on a lovely smile and finding new ways at keeping people away from me. I hurt a lot of people in my 20’s as I struggled with the grip PTSD and depression had on me. People did not like me because they only saw what I wanted them to see. A smile, mean words at times, and a person desperately trying to be what others wanted me to be because I hated who I was. Funny how when you wear masks people end up not liking you because you are either trying too hard or they want you to take the mask off, which back then I was not prepared to do. I did not want people to see my pain or carry it on their shoulders, as I carried it on mine.

At the age of 41 I now look back and wish I could apologize to each of those people, but most of them cannot be found. It is almost ten years ago now that I lost my father to cancer and it was during that time that the grip PTSD and depression had on me began to loosen. There were conversations had with my father in which he reminded me that I had this one life and opportunity to make those dreams I feared happen. This one life to learn to love the person I am and let go of my self-hatred. One opportunity to just be myself, flaws and all. During this time, I learned that masks were truly only best worn on a stage; but not in everyday life. I watched as the man I once thought of as a brick wall, a man who could never be torn down, changed before my very eyes. His mind left and his body weakened. Yet during this time he told me to live, breath, love, and grow. The grip mental illness once had on my hand was replaced by the strong grip of my father reminding me to be kind to myself.

For years now I have lived without PTSD and depression by my side. They taught me many things, but I had to say good-bye to them so I could allow myself to shine and pursue my dreams. Funny how life is though. When I lived with PTSD and depression people did not like me because I would push them away or try too hard to fit in. Now I am perhaps too honest, because I lived for so many years not being honest with myself or those around me, and people do not always like that. However, I refuse to be ashamed or to hide anymore. I want honest conversations. I want people to tell me when I mess up because it only helps me to grow. If people do not like me that is okay because now I live my life without masks. I will never go back to wearing masks or hiding who I am. One thing I have learned is that we all have stories, moments that have molded us. Why do we fear sharing those? Why do we fear allowing people to see who we are? Why do we fear honest conversations, even if it means something may hurt our feelings? I am not ashamed of my past journeys with mental illness or the paths it took me on. I am grateful to those who stood by me and believed in me. To those I brought pain and pushed away, I am sorry. In the end, we are all on this journey through life together. Let us start holding hands and learning from one another. Let us stop the stigma.

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My Broken Mind

I think, in part, that I was hoping for a miracle cure, that I would eat these magic beans and become a Normal Person, but I know how unlikely that is. Still, it’s the dream of almost every person living with a mental illness that they will somehow attain balance and stability and lead a normal life, and I’m no different.

What the hell? I’ve been symptom free for a year and suddenly I’m aware that my old mainstay delusions are looming in the periphery, with no apparent triggers or forethought. How is this happening? Thank goodness I’m able to see myself and my situation from something akin to a third person perspective, hence the awareness of the symptoms. But again, what is this? I felt for a short time like I was losing ground. What an uncomfortable feeling.

I need to talk with my psychiatrist about this because, up until now, my medications seemed to be seamlessly preventing psychotic delusions from entering my consciousness. I talked it over with my therapist and we can’t come to a conclusion other than that my mind seems to be on a cycle with higher activity in midwinter and late summer, and perhaps this is inevitable leakage from the midwinter peak. We’d previously tracked my trips to the hospital and any major activity to that period. This past year was without incident. Until now. I am struggling with paranoiac thinking. From where I stand, one of two things might be happening: (a) my meds may need to be tweaked, or (b) I’m dealing with residual schizophrenia. Thankfully, I’m not the expert here. I do my own research, but I’m not the one with the degree in psychiatric medicine. So I’ll be asking questions.

Residual schizophrenia is a subtype diagnosed when the client is no longer exhibiting prominent symptoms. Compared to the acute phase of the illness, symptoms may still be present but appear substantially diminished. While I take umbrage with the phrase “high functioning schizophrenic”, I understand its implication. I am not catatonic and do not require constant care, nor am I without symptoms and therefor normal. Regarding residual schizophrenia, people with a higher level of functioning typically have a better outcome, meaning that they experience only brief episodes of symptoms worsening before returning to manageable levels. Then again, considering that my illness began in preadolescence, a poorer prognosis could be indicated.

All this worry has me upset, but, thankfully, my anti-anxiety medication works wonders. My antidepressant seems to be working, although I still wax melancholic from time to time, which seems natural enough. So inasmuch as my layperson comprehension goes, I suspect that my antipsychotic chems need adjusting. My one concern would be that increasing my dosage could result in the side effect of tardive dyskinesia, the involuntary and repetitive movements of the face, tongue, lips, and upper body. Tardive dyskinesia is difficult to treat and often incurable. I’m fine now, but that possibility unnerves me. Perhaps I’ll just ride this series of events out being that they are fairly minuscule, however disconcerting. Having developed a more objective viewpoint, I hold that I can weather this period. I still plan on talking with my psychiatrist.

I think, in part, that I was hoping for a miracle cure, that I would eat these magic beans and become a Normal Person, but I know how unlikely that is. Still, it’s the dream of almost every person living with a mental illness that they will somehow attain balance and stability and lead a normal life, and I’m no different. I lived with schizophrenia for years before receiving my diagnosis. I hated feeling like an outsider. The loneliness was crushing.

Having no friends, feeling distant within my own family, covering up those feelings with acts of rebellion and suicidal thought, all got to be too much. Never fitting in at work hindered my performance and my chance for promotion, and ultimately cost me my job. Time pushes forward, so I live each day as if it were my last, squeezing as much joy as I can out of every experience. And on those days when I see and hear things that no one else sees or hears, I immediately lose that joy and find myself pondering the mystery of my mind and how it works.

A treatment plan like the one I have might give me fewer difficult days, and maybe that’s all I can ask for. If so, I’m more than happy to count those good days as they accumulate. I am determined to live a life with all the sparkles in it. I just need to get past this obstacle and push forward with the aid of my outside help. There are many ways to calm the untethered mind. I have my plan. I just need patience. I don’t need to be hard on myself. Repairing a shattered mind and maintaining it in a healthy manner is what it’s all about. Life is a gift.

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What To Do During The In-Between

With bipolar disorder, it’s a given that I will crash into deep depressions out of thin air for days or weeks at a time. Or that I will inevitably snap into manic episodes for no reason for long stretches as well. Or the worst. A mixed state. Thinking about those unbearable bouts terrifies me. Since I am so sure these unpredictable periods of my life will come into play every single year, I spend all of the time when I’m not “in” one of those three states worrying about when they will hit.

It dawned on me recently how much time I spend preparing for the worst. And sometimes it pays off. For instance, when I spend an elaborate amount of time preparing for a big trip and then bam! I’m prepared and it goes great. Or in my work atmosphere. I dedicate extra time in preparing for phone meetings so I am not caught off guard by any topic. And I definitely spend too much time on projects in an attempt to scale back on extensive rewriting requests.

I have always felt that being prepared was a positive skill. Who doesn’t like to be prepared? Actually, I don’t understand people who aren’t organized or prepared. Why would you NOT want to be?! It’s quite frustrating when I hear about how ill-equipped people are for daily occurrences they know are coming. But, it’s not about them, it’s about me. I know everybody functions differently so I have to let go of my priorities when talking to somebody who walks through life differently than me. I of all people should know how quirky differences and behaviors make up a good part of who we are.

Getting to the bigger-picture-realization in all of this was coming to terms with how much of my time I waste on preparing for, and dreading, my irrational mood swings. With bipolar disorder, it’s a given that I will crash into deep depressions out of thin air for days or weeks at a time. Or that I will inevitably snap into manic episodes for no reason for long stretches as well. Or the worst. A mixed state. Thinking about those unbearable bouts terrifies me. Since I am so sure these unpredictable periods of my life will come into play every single year, I spend all of the time when I’m not “in” one of those three states worrying about when they will hit.

You would think at this point I would feel confident that I am as prepared as I can be for those daunting periods of my life. I know my meds and what changes I need during those times; I have my lifelines to call for support; I have a financial back-up plan; I know what my body and mind need during those periods, etc. But recently, I noticed that it is almost like I am waiting for it happen. It makes sense, since the moods are guaranteed and unpredictable that I would be on edge. In fact, I feel entitled to dreading them to some degree, it’s only natural.

I am obsessed. That is where I have crossed the line. I just wait every day. Waking up wondering if today is the day my body and mind chemistry decide to change on their own without my permission. Is today the day I have to make excuses to clients and friends about the upcoming days or weeks? The logistics themselves are overwhelming; and then there are the “moods”. I always disliked that term, moods. I feel that it suggests I put myself in those states, as if it were a choice. I am not a moody person. I am only burdened by the onslaught of illogical moods.

So I wait. And when a drastic mood state doesn’t come for days or weeks or months, the pressure and anticipation continue to escalate. Brief periods of wondering if I am getting better float me through several days in these “off” times. I wonder if these longer stretches of perceived normality mean I’m doing everything right and becoming more resilient by pure will. Then I remember to ground myself heavily back on the ground because I know it’s still there. My lifelong companion of unfair altered states and the fear of them that dictates even the best of days.

My forced realization of how I spend so much time dreading the worst of days fell upon me as I finally admitted to myself that I am wasting so much good time! I know for a fact I’m the best prepared for those horrible states than I have ever been in my life. I need to find a way to push myself to “enjoy” to whatever extent I naturally can the times in between when things just aren’t as bad. Maybe by sharing this conundrum, others’ experiences can spark ideas how to start living my life during the in-between.

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Love and Mental Illness

You and me. Us. It isn’t easy. We both bring our own set of challenges to the relationship, but somehow they are what has made are love stronger. It is in the difficult times that love is seen most clearly and I know without a shadow of a doubt that you love me exactly as I am.

To My Husband,

Remember the night I first managed to come clean about my fear of being unlovable?

Our wedding was just days away. Every night we’d go on long walks, holding hands, praying about our future together, and baring our souls to each other, but that night the joy and hope that normally filled our conversations was replaced by my palpable anxiety,

“Sarah can you tell me what you are so afraid of?” you asked with compassion in your eyes.

I pulled my hand out of yours and hugged my scarred arms tight to my chest as I acknowledged in barely a whisper, “I am afraid I am too broken to be a good wife.”

My whole body convulsed then with the shame of my confession. More than anything I wanted to be enough, to be worthy of your love. Throughout the course of our engagement you had reassured me time and again that I was lovable and beautiful, but I couldn’t believe you. My mind was filled with images of all my secret broken places, each evidence testifying of my unworthiness.

Only I knew the depth of the darkness that I experienced when I was depressed. I alone was intimately acquainted with all the desperate and self-destructive choices that I had made in my struggle to live with mental illness. I had so much bad history, and even though I shared with you pieces of my story I knew it was one thing to hear about anxiety and another thing to live with someone who has an anxiety disorder. So despite your reassurances when I asked myself, “If he really knew me would he love me?” my answer was “no, you don’t even love yourself.”

We stopped walking then and you had me sit beside you on the curb

“I am afraid,” I continued quietly, “that if you marry me we will never have children. What if the eating disorder that I struggled with in the past has caused infertility?” I shuddered, “I really think I may never be able to have children.”

Do you remember what you said?

“Sarah,” you said, tears running down both of our faces, “Infertility could never change the way I feel about you. Where you see yourself as weak and contemptable, I see a woman who has had the strength to overcome adversity. Where you see your scars as ugly, I how courageously transparent you are with the journey you have been on. That is beautiful to me.”

That moment changed the way I looked at myself, as person who lives with depression and anxiety. Your unwavering support in that moment gave me the courage to walk down the aisle and see our hearts and futures inseparably bound together. I am grateful every day that I did.

As the years go by in our marriage you have proven my fear that “if he really knew me he would not love me” false. Thank you.

Thank you for proudly standing beside me on our wedding day when I wore the dress that did not even try to conceal my scars. You made feel so beautiful.

Thank you for coming with me to my therapy appointments when as a newlywed I found myself facing old fears in the new light of our marriage. You didn’t sign up for that, but you never complained you.

Thank you for those times early on in our marriage when you wrapped your arms around me as I sat on the bathroom floor in our basement apartment rocking myself because how deeply brokenness from my childhood still haunted me. Just having you there healed my heart in ways I cannot explain.

Thank you for praying with me a thousand times that God would give us child. You knew more than anyone else how broken hearted I was month and month and you just loved me through it. You were my rock, never once blaming me for the years of waiting.

Thank you for your kindness to me on the days when exhaustion and anxiety keeps me at home because I am too afraid of what people think— And thank you for always reminding me of the truth, “You don’t have to be perfect Sarah. People love you for who you are. You are a good person.”

Thank you for being sensitive to the day to day struggle that is living in recovery from an eating disorder. You have helped me see my scarred body, my pregnant body, my post-baby body as beautiful; and whenever we witness body-shaming in our culture you are always quick to preemptively remind me that I never need to change a thing about the way I look to make you love me.

This love you show me every day, despite the real ways in which my struggle with depression and anxiety affects you, has helped me learn to love myself completely. You have helped to understand the power of my perspective, my story, and my voice.

You and me. Us. It isn’t easy. We both bring our own set of challenges to the relationship, but somehow they are what has made are love stronger. It is in the difficult times that love is seen most clearly and I know without a shadow of a doubt that you love me exactly as I am.

I love you exactly as you are too.

And more every day.

Sarah.

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When Panic Strikes

Being told to calm down and get over it implies that the person experiencing the panic attack is doing so by choice, a common misconception in the day-to-day world, and a stigma that needs to be smashed. Between three and six million people in the U.S. struggle with some form of panic disorder. It can come at any age, but it most often begins in young adulthood, and often run in families. Some people may only experience one panic attack in their lifetime, while others may develop a disabling disorder if the symptoms go untreated.

Walking home from the grocery, I saw a man having an animated conversation, his phone in one hand, the other gesturing in an irritated manner befitting his words.

“No. Listen to me. You’re having a panic attack. Calm down!”

It definitely caught my ear. I wanted to say something to him, but it was none of my business. I felt sorry for the person on the other end of the line, especially when he said, “Get over it.”

There was something in his tone that let me know that this was familiar territory for him, but his choice of words seemed born of frustration rather than compassion. I knew it wasn’t my place to judge, but if the person he was speaking to was going through a panic attack, the directives “calm down” and “get over it” were counterproductive and anything but supportive. I take one medication twice daily to keep my own anxiety in check, otherwise I’d be having major panic attacks four or five times a year. Trips to the ER always followed. It was no way to live, especially since, for me, panic more than often opened the door to psychosis.

Being told to calm down and get over it implies that the person experiencing the panic attack is doing so by choice, a common misconception in the day-to-day world, and a stigma that needs to be smashed. Between three and six million people in the U.S. struggle with some form of panic disorder. It can come at any age, but it most often begins in young adulthood, and often run in families. Some people may only experience one panic attack in their lifetime, while others may develop a disabling disorder if the symptoms go untreated.

Panic attacks mimic the symptoms of heart attack or stroke: chest pains, pounding heart, sweatiness, dizziness, feeling flushed or chilled, numb or tingling limbs, ringing in the ears, nausea, difficulty swallowing. There may be a sense of impending doom. The person may feel detached from themselves, or depersonalized. An acute fear of death may overcome them.

A panic attack may last from two to ten minutes, sometimes longer. They may come in waves, with bouts of anxiety in between. Panic attacks often come without warning. They may be accompanied by symptoms of depression.

In my case, my panic disorder went unchecked long enough that I developed agoraphobia, a debilitating disorder defined by symptoms of intense fear when being alone outside of the home, being in enclosed or open spaces, or using public transportation. I would have to have a friend come with me if I knew I had to ride in an elevator, and I would still break down regardless of their presence. If the bus got crowded, I would have difficulty breathing, break into a sweat, and get off at the next stop to wait for an emptier bus. Sometimes I would simply avoid going anywhere. Agoraphobia still haunts me, although my meds have helped somewhat.

So what about the person on the other end of that phone? If he or she were having a panic attack, how better could the sidewalk caller have handled the situation?

Start by encouraging them to breathe. Deep breathing can help combat the panic. Stay in the conversation with them. This lets them know they are not alone. Try to remind them that it’s temporary. If they’ve been here before, then they might remember that the effects are short-lived and that balance will return.

If you are physically with them, stay with them. Help them to focus on something else. Try to make them comfortable. Put them at ease. Reassure them. Do not dismiss them or their fears—this only serves to exacerbate the problem. Don’t patronize them. Treat the situation as you would a medical emergency, like a broken bone or a deep cut. The experience is very real to them; treating it as they see it is the best way to help. Listen supportively without pressuring them. A panic event is generally short; wait it out together. If the symptoms do not subside within a reasonable amount of time, seek medical assistance. An ER physician will likely administer a medication to calm the heart and adrenaline in the person’s body.

When I’ve been caught in a panic attack, my mind can’t tell the difference between real or imagined danger. I believe it, so it’s real to me. It’s been a year since my last panic attack and I’m grateful for that. I have my worries like anyone else and I get anxious sometimes, but nothing pushes me over the edge into terror. Thanks to my treatment plan, I’m calmer and happier and I’m living without unnatural fear for the first time in years.

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When The Seeker Is Ready

In reality, being unwell may not be hard, but it can be incredibly painful. It can be isolating. It can be complicated. Juggling the day to day tasks of living can be an effort. There is too much or not enough of everything. Things are too bright or too dim. Things are too big or too small.

There is a sacredness to our relationship with our therapist. We open our hearts and ask another person to peer in. We share our stories, show our scars, expose our most tender feelings and protected memories. There are times when we share with our therapist things we might not share with another person, even a spouse or close friend. We have faith that our therapist will honor and respect us. For many of us, there will be few relationships more intimate than the one we share with our therapist: intimacy based on trust, truth and emotional vulnerability.

I have said, again and again, that being unwell is not hard. This is only true in that it requires very little effort, on my part, to remain stationary, locked in the same patterns. After years with an undiagnosed mental illness, I have all the tools required to survive; if surviving is my only goal. Over the years, I cultivated some spectacularly innovative, but ultimately impractical, coping skills. When I am at my worst, all I have to do is dig into my bag of homemade salves and I can find some way to temporarily sooth my hurt. I can be selfish and self-indulgent. I can be restless and self-destructive. I can be quiet and emotionally detached. Usually though, I end up at sleep. Sleep, which quietly consumes each day with such quiet efficiency that entire years disappear, unnoticed.

In reality, being unwell may not be hard, but it can be incredibly painful. It can be isolating. It can be complicated. Juggling the day to day tasks of living can be an effort. There is too much or not enough of everything. Things are too bright or too dim. Things are too big or too small. Ultimately, I reached a point when breathing hurt and the air on my skin felt felt like wool. My level of discomfort directed my day. I only began therapy because being sick became unmanageable. Frederick Douglas once said, “If there is no struggle, there is no progress.” This is so true, my friend. After all, if staying in the same place wasn’t so uncomfortable, would any of us reach out for help?

There is an old proverb that says, “When the Seeker is ready, a Guide will appear.” To the seeker, the proverb instructs both to “seek” and be “ready” for a journey. For me, that journey is both inward and outward – but self-inventory can be messy and exhausting. I live with so many regrets: all the times I chose wrong, all the times I behaved badly, all the missed opportunities. Shame is a heavy load to carry. It is especially heavy alone. I understand that I need help. I accept that I can’t do it all by myself. I called to the universe for a guide. I did not call for an oracle or a savior; I called for an experienced traveling companion. I looked for someone whose light would illuminate my path. Someone to walk beside me, listen to my fears, and help me carry my bag of homemade salves. I knew, above all, that I needed someone who could help me, along the way, lay down the things I no longer need.

I asked for help only when I came to fully understand that I need a guide, to walk beside me and help with the heavy lifting. I accepted help only when I came to fully understand that I AM THE SEEKER and I must be ready to travel. Staying sick, staying in the same place, can be easy. Change is hard. Still, I understand that change is necessary in order to manage my disease. I am learning that mental illness can feel like a line of stones, tethered to your ankle, or it can feel like a pebble in your shoe. Either way, when movement becomes necessary, change is inevitable.

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My New Beginning

Through a 12-step program, I tried coping with my new, clean life. But I was still consumed with self-loathing, insecurities, imaginary judgments, and panic attacks. At the same time, I had lofty thoughts and philosophies, grand plans and delusions. I was right back in the kind of spiraling bipolar episode I’d been bandaging for more than seven years.

I recently embraced a new way of living. My life depended on it.

Years ago I was diagnosed with bipolar I disorder. Back then recovery wasn’t well defined. While I knew my condition was real and needed to be managed, I didn’t have the right tools to maintain good mental health. I took my medication, and the trippy hallucinations and racing thoughts ebbed. I figured if I wasn’t seeing or hearing things, all was well.

And to some extent, it was. I ventured out on my own again, worked a good job, fell in love, got married, and started a family. But despite the support of my medical team, I fell into a 10-year haze. Addiction is a key aspect of my mental illness. I was self-medicating with marijuana and daily doses of Klonopin, a benzodiazepine that was prescribed to manage my anxiety. I started abusing the prescribed medication soon after our son was born, at a time when I was fearful of reorganization at my company and other changes.

While I appeared from the outside to be functioning, inside I was falling apart. Basic tasks such as dishes and laundry were beyond me. My husband did the heavy lifting. I was adrift in my delusional mind, losing four significant jobs in five years. My failures couldn’t be my fault, I thought. My mania persuaded me I was invincible and didn’t need to manage my stress.

Finally, after I lost yet another job, my therapist made it clear that I needed to detox from Klonopin and find a new baseline. While I was at it, I had to stop smoking weed. Any chance of living normally would entail drastic change.

Thankfully, I followed my therapist’s orders. I stopped. Tapering off Klonopin under medical supervision was horrifying – like a bad acid trip at the eighth-grade social. But the process convinced me that my addiction was real.

Through a 12-step program, I tried coping with my new, clean life. But I was still consumed with self-loathing, insecurities, imaginary judgments, and panic attacks. At the same time, I had lofty thoughts and philosophies, grand plans and delusions. I was right back in the kind of spiraling bipolar episode I’d been bandaging for more than seven years.

I figured rapidly swinging moods must be my reality. My 12-step program and peer support kept me clean, yet my busy mind could not grasp the coping techniques being offered.

Five months into this dark, painful, and confusing journey, I was unsure which thoughts were mine and which were products of the blasting synapses in my chaotic head. I started to believe death was my only option. That’s when I reached out for help.

My sponsor helped pack my hospital bag and my husband drove me to the ER, where he sat with me through intake. For a little over two weeks, my medication was tweaked and I spent days learning how to recover. I was finally learning how to live.

My toolbox is now fully stocked with coping techniques. Today I walk, journal, visit my therapist, attend meetings and am conscious of my mood. Stress-filled thoughts pass by while I deal with the moment. Life feels peaceful and calm. I’m living in a way that can lead to a fulfilling next chapter of my story.

Being alive is a gift that I am hanging onto. But if I lose my grip, at least now I better understand what I need to do in recovery. I know how to address my symptoms – addictive, manic, and depressive. It seems like a good first step.

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Missing The Old Me

There are times when, if it’s brought to my attention, I can notice that the natural exuberance is missing, that the interconnectedness of everything is minimized by the meds. The talent is still there, but I’m delivering it through reduced affect, an emotional blunting that appears regardless of whether emotion is actually reduced or not. This is rock and roll and I’m leaving it all on the stage, except that it’s only noticeable if you close your eyes.

I had just stepped off the stage and was winding my way towards a table of friends when a fan approached me. Staring earnestly into my eyes he asked a simple question: “I understand you’re on antipsychotics now, but can you get off of them, somehow? I miss the old Henry Boy.” I was taken slightly aback, but found myself able to reply after a brief pause to collect my thoughts. “A year ago I suffered a psychotic break and tried to kill myself,” I told him, candidly, “so I think I’ll stay on the meds.” He nodded and faded into the crowd.

I knew what he meant. I could feel it, too. My voice was more confident than ever, but my stage presence was nil. I watched the video. I just stood there in front of the microphone like a cardboard cutout of myself. Gone were the trademark mannerisms that might have signaled “Rock Show”. I took my place in the spotlight and delivered the songs with all the gusto I had, and that was plenty, vocally. It was the stage persona that I’d cultivated over the years that dropped to zero charisma. He was right. In that moment I missed the old me, too.

There are times when, if it’s brought to my attention, I can notice that the natural exuberance is missing, that the interconnectedness of everything is minimized by the meds. The talent is still there, but I’m delivering it through reduced affect, an emotional blunting that appears regardless of whether emotion is actually reduced or not. This is rock and roll and I’m leaving it all on the stage, except that it’s only noticeable if you close your eyes. And there’s the rub. Same thing goes for conversation. I might be delivering the funniest one-liners ever, cracking my friends up over brunch, but my hands and face aren’t engaged in the convo. It’s a vocal delivery system. Fine for the phone, not so much for the interpersonal touch.

My friend Nika had come to the show and was engaging as ever, regaling us with stories of theater productions she’d recently seen or been involved in. While I listened intently, one would hardly notice I was at the table, I was so seemingly disengaged. My head barely tracked back and forth as patrons passed by, pausing only to bob up and down when a friend would stop to greet me. Again, little to no animation. Just the Andy Warhol affectation of boredom, or so it would appear. In truth, I was ecstatic. In demeanor I was lifeless.

Reduced affect is defined as a lack of emotional expression. It is most commonly seen as a symptom in schizophrenia, depression, trauma, and autism. The individual appears unresponsive to outside stimuli. This differs from apathy in that, rather than lacking, emotions may just be going unexpressed. Body language, tone of voice, or facial expressions may not be exhibited. Reduced affect is considered to be one of schizophrenia’s negative symptoms, but it can also be equated with the side effects of certain antipsychotic and antidepressant medications. I’m on both. Hence the blunt.

In print media this is moot. I’m not required to physically interface with the reader. The words do all the work. My body takes a break. My face is a photo in the “About The Author” section. In a world of texting, I’m safe in my flatness. But the world isn’t flat, as our ancestors once thought. No ships sail to the edge and fall off, and no emotion rides that tide into oblivion. Statistically, only seven percent of our communication is verbal, with the other ninety-three percent being nonverbal. As a performer I had honed a persona that audiences had come to expect a level of showmanship from. Social custom would anticipate a more animated member at the breakfast table, too. Either way, not so much the zombie, but that’s what I bring to the conversation now.

The blunted affect is not all that dissimilar from anhedonia—the loss of enjoyment, happiness, fun, and satisfaction. I’ve experienced the lack of pleasure due to anhedonia, and now find the side effects of my chems to produce a startlingly familiar result. When I was sick, my emotions relating to pleasure weren’t expressed much because they were literally decreased by my disorder. Now I’m faced with a similar experience induced by the very medicines that keeps me together. It’s ironic, and a tradeoff that I’m having to come to terms with. What will happen to kissing, laughing, coziness, and comfort? Only time will tell. For now, I’ll stick with the new me no matter how much the old me is waiting in the wings. This stage ain’t big enough for the both of us.

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The Power of a New Year

For all of us who take medication, I concur that it’s a pain-in-the-ass routine. For all of us who feel really good and think we can get away with stopping our meds, THINK and REMEMBER how it used to be.

Here we are: 2017 with a new President and everything that comes with that. Closer to home, we have snow and everything that comes with that. I much prefer the snow.

I made a grave error over the holidays: I ate everything in sight! Now I have to try to revert to what I was eating before Thanksgiving – NOT MUCH!! Not wanting to become diabetic is what makes me resist my appetite; if it wasn’t for medical reasons I would eat myself into oblivion. But that’s not what makes the New Year great. I like to think positive thoughts about 2017, not just those common resolutions like relationships and whether we’ll get a new dog or cat.

This year I’ll make a grand effort to stop my quiet temper tantrums over taking my medications. Almost every night, when I glance at my clock and see it’s almost 8pm, I want to say “NO!!!!!!!!! I’m so sick and tired of taking these damn pills!!” But guess what? I take them anyway. For all of us who take medication, I concur that it’s a pain-in-the-ass routine. For all of us who feel really good and think we can get away with stopping our meds, THINK and REMEMBER how it used to be. All I have to do is remember what it felt like to be catatonic, hiding in the closet, the unbearableness of it all. I wouldn’t mind being manic for a few hours but I wouldn’t trust myself to not wrecking my life again. I don’t want to have to apologize over and over again like I did when mania finally left years ago. So, I take them.

So far 2017 sees me eating less and sticking to (not whining about) my medications.

2017 will see me walking my dogs every day, not just when I feel like it. Walking dogs is code for getting exercise. I am in the process of resigning from the athletic club I belonged to because I NEVER WENT!! I’ve been paying for over a year and have only gone once and that was awful; I joined a yoga class and couldn’t do much. I don’t know why I didn’t resign my membership that very day – pride? Walking my dogs not only gives them time out of the house but I get the kind of brisk walking that is recommended to anyone.

It’s snowing tonight as I write to you. The sidewalk is dusty with snow showing the tread of my shoes and the paw tracks of one of my dogs – Rosco if you must know. Tomorrow, by mid-morning, the tracks will be replaced with snow shovel marks. But the snow will be back.

I think 3 resolutions is enough, just the right number to uphold. Eating right, not whining about taking my meds and walking the dogs: I can do that.

I’m including a painting by my eldest son, Calen Pick, who lives with schizoaffective disorder.  ‘Cottonwoods on the River’ and, as you can see, it is winter here in Montana.

 

 

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So, What Are Relapse Prevention Plans?

I arrived at the state hospital not as a novice any longer, but with approximately five years of direct clinical work under my belt as a psychiatric social worker. I had worked with families with issues involving mental illness and / or substance abuse related problems in a variety of contexts. However, I also realized very quickly that I was far from an expert in my field, and that there was much to learn in order to better assist my patients.

I arrived at the state hospital not as a novice any longer, but with approximately five years of direct clinical work under my belt as a psychiatric social worker. I had worked with families with issues involving mental illness and / or substance abuse related problems in a variety of contexts. However, I also realized very quickly that I was far from an expert in my field, and that there was much to learn in order to better assist my patients. These patients were a group of adults with diverse backgrounds whether it be race, religion, ethnicity, gender and sexuality, or socio-economics. The common denominator was that each person was struggling with mental illness and had committed a serious crime. However, even the mental illnesses that they were affected by, and were working on learning to manage, were diverse by diagnosis and by their personalized experiences. Often, the ongoing learning that I received came directly from these adults who were working on regaining self-control back into their lives involving either clarity of thought and / or significantly improved regulation over their mood states, be it from severe depression to intense internal agitation. These adults helped the clinicians best understand their experiences and their limitations / barriers to self-control. Together, we devised individualized plans to assist them toward making a true recovery including, and especially in, the areas involving self-governance.

For decades, the formal term for these devised plans had been Relapse Prevention Plans. Under a newer approach, the Recovery Model, these plans became known as Wellness Recovery Action Plans (WRAP), but everyone still called them ‘relapse plans’ for short. It was an expected and significant part of each person’s overall discharge process, but the reality is that I never met anyone who came close to being seriously considered for release from the state hospital that was not GENUINELY focused on their relapse plan, which they understood was critical to their success of maintaining the gains they had made in their lives and avoiding setbacks. In part, they needed to have this plan to share with the clinical staff, but they also had to be able to answer questions relevant to it in a formal forensic interview in order for them to be considered for a discharge under a program called Conditional Release. However, the majority of these patients were extremely proud of the hard work which went into the establishing of their solid relapse plans. For each one of them, it deepened their understanding of themselves and how they can best maintain a positive quality of life once they are living in the community again. They are actually counting on these plans to manage their lives despite the normal stressors, twists, and turns which life has to serve up some days.

Most plans include elements of daily routines that provide structure that is consistent and helped each of them maintain, for example, an improved level of hygiene, one’s overall physical appearance, and taking their medications as prescribed. Often, when mental illness symptoms are strong and adversely effecting an individual, these basic daily functioning and routine events become a forgotten pursuit. Most of us take these things for granted every day as it becomes rote in your life. This isn’t true for someone whose mind can clinically detach from reality, wander, or become seriously intruded upon / interfered with while attempting to do these daily tasks. This is, unfortunately and too often, the image of a person that law enforcement comes in contact with when one’s mental illness is not being maintained well. If that person’s behavior becomes erratic or intrusive enough, they will bring attention to oneself from the police. The person may appear disheveled or dressed bizarrely with mixed matched clothing, and, if wearing makeup, it may be exaggerated.

Relapse prevention plans can be very extensive and need to be personalized to truly be meaningful. Relapse plans are filled with coping strategies and skills that an individual has created. Given the amount of space necessary to adequately address the varying components of these plans, I will continue to only discuss general elements in this blog and will be more specific in subsequent blogs. I plan to explore relapse components by major diagnostic areas such as depression, bipolar disorder with or without manic episodes, delusional thinking, hallucinatory experiences of all types, etc. Some other generalized features of relapse plans involve setting up strategies to becoming more “mindful” of the critical daily routines and learning how to maintain this state. Mindfulness is interpreted here as being in an increased state of conscious awareness and focus, often requiring things being done one thing at a time. Some mindful activities should likely include daily medications and vitamins, meal preparation, cleaning of bed area and overall living environment, exercise and maintenance of health issues, water consumption, napping and / or evening sleep patterns, etc.

In my experience, when people followed their relapse plans, they decisively lived happier, healthier, and more productive lives!! They maintained their freedom and liberties. They were rarely managing extreme emotions, i.e. suicidal ideation, and rarely needed to be hospitalized for their symptoms. They developed trusting relationships with the mental health professionals working with them. They were able to manage stressors more effectively. Overall, it clearly is a win-win for sure, in my humble opinion!!

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Methodically Preparing For An Unexpected Lesson

When I say I like to be prepared, it is an immense understatement. I take pride in being prepared for the known, and the unknown. I obsessively play the tape through every possible scenario knowing that being fully equipped for each one will boost my mood up a notch. But in all actuality, I obsess over having to know what to expect at every turn, from hour to hour and day to day. My routine and planning consumes my thoughts. So while I feel I cannot rest until I am prepared for every task, every day, every adventure…I never really feel prepared. Never at rest. There is always something tugging at my nerves.

When I say I like to be prepared, it is an immense understatement. I take pride in being prepared for the known, and the unknown. I obsessively play the tape through every possible scenario knowing that being fully equipped for each one will boost my mood up a notch. But in all actuality, I obsess over having to know what to expect at every turn, from hour to hour and day to day. My routine and planning consumes my thoughts. So while I feel I cannot rest until I am prepared for every task, every day, every adventure…I never really feel prepared. Never at rest. There is always something tugging at my nerves.

The up side to the obsession is that I usually actually am prepared for most of what comes my way. I by far do not live by “if it ain’t broken, don’t fix it.” Quite the opposite. Rather, I thrive by the words, “it can always be better.”

Recently, my need to be intensely organized was called upon in aces. I traveled far from home to journey from Saigon, Vietnam across land through Cambodia into Thailand, with a quick trip through Singapore on my way home. The good part is that I use to be an avid traveler. I lived in Singapore for two years, surrounded by a time in which I traveled through many countries in Asia, sprinkled with as many trips as I could manage since then to new lands.

I spent a month planning and packing for this recent trip. I thought of every possible situation including every possible illness I could be stricken by. I started by making elaborate, yet organized, lists of what I needed to pack broken down by categories. I got early refills on every medicine I was taking, or could possibly need, for the trip. Paranoid that I could lose my luggage at any given part of my trip, and honestly, quite a rational thing to prepare for; I packed enough meds for my two-week vacation threefold. I placed one set buried in my suitcase, one in my first-aid kit, and one in my backpack that never left my side. I figured if all else failed, as long as I had my passport and meds, I could survive.

The more I prepared, the better I felt I could take on this journey on my own and actually enjoy myself. I was meeting up with a small group tour, so I was not anxious about being on my own. I feared the worst though from my moods. Surely traveling 30 hours each way would weigh on my mental health, not to mention physical health. And it did. But the excitement of the trip took over once I arrived at a small, dark hotel in Vietnam at 2 am. I knew I could do this. I knew I was prepared. And so the trip unfolded. And I was absolutely prepared! I kept my sleeping on the schedule of my arrival destination from the time I left my house. I took just the right amount of extra sleep-aid with my meds to rest at night. I snacked on my homemade protein snacks I brought in between local meals. I kept myself hydrated in the suffocating heat, including dropping my electrolyte tablets I brought into my water everyday.

I felt amazing! For the first six or seven days. At one point, I thought that maybe traveling like this, exploring new cultures in an adventure-like environment was the cure. The cure to my horribly unmotivated days, my painful depression and dysphoric manic episodes. Feeling empowered by my extreme preparation, I felt on top of the world. Which meant what came next was absolutely natural for me.

I came down from that high and sunk back into reality. And it hurt. I wasn’t at an all-time low or deep depression. But I was back where I was before I left for the trip. I was tired, sad, unmotivated, and uninterested in everything. I was just there. It didn’t matter where I was, but my bipolar was with me. And I guess I was prepared for that too. It was merely a fleeting second that I thought I could beat the disease. And it was an amazing fleeting second.

I did the only thing I knew how to do, and that was to keep going. I got up everyday, but didn’t join my group for all of the activities. I listened to by body and did what was best for me, which was mostly rest. Being alone to recharge. I continued to eat the best I could, slept as much as possible during the night hours, and push through conversations with my co-travelers as pleasantly as possible as to not stand out. I pushed my moods down as far as they would go in order to “enjoy” the rest of the trip.

And I continued to be rational, what I am best at. I excel in preparing and handling situations rationally; coming at them with solutions, as I have gotten used to problems unceasingly coming my way. I decided that traveling was not the answer to my problems. That the short elated mood I experienced was amazing, but not the end-goal. I knew that if I was to make peace with myself, to accept that my bipolar is everywhere I go, I had to take something else from this trip back with me. So I focused through the familiar haze to find what I could bring back from this wonderful experience that would enhance my life today. I took back the knowledge I gained about extraordinary cultures and shared it. I took back the humility I learned from the people in the towns I visited that I spent time with. And I took back an elevated sense of mindfulness that I had tried to harness before, but could only really grasp with true practice.

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To Be Included

So what does it feel like to be included? It’s a rich, rewarding connection. Inclusion feels like the kind of acceptance that I dream about, where I can just be the best version of me and have that be all right. The hard part is remembering that I’m included. I can’t always do that and I don’t always trust it. Negative symptoms tend to scrunch all that insider- ness into a ball and toss it in the wastebasket.

I could hear the sentence jumble itself up all twisty and kerfluffled like the prattling of a drunken parrot, but could do nothing to stop it from spilling out into the conversation. I tried again. And failed again. My cousin just took it in stride. I apologized. He shrugged it off. Said he kind of caught the gist of what I meant and just rode with it, no worries. Sometimes symptoms slip through the cracks that medication can’t entirely seal up. That I was embarrassed spoke more to my insecurities than to my cousin’s initial bewilderment. Nothing had happened really, save for a momentary detour into a surrealist monologue.

It’s times like that, however, when my feeling like an outsider manifests more profoundly. A train wreck of survival experience gone haywire, it comes from coping mechanisms clashing with years of self-conscious behavior. I address the feeling of being an outsider from my viewpoint as a person living with schizophrenia, but I know that the feeling is felt across many mental disorders. It’s not exclusive to any one diagnosis.

People with no mental health issues can feel uncomfortable in a social setting, but this is more than that. It traces back to the symptom of avolition. Losing motivation to perform simple tasks or self-directed activities might appear to be a choice, but it’s not. The literal meaning of avolition is “poverty of will”. Identified as a negative symptom of schizophrenia, it is also seen in bipolar disorder and some cases of trauma. Nothing makes me feel more like an outsider than having the desire to complete certain tasks, yet finding myself lacking the necessary behaviors to do so, and not realizing it until it’s too late, if at all.

Trapped in a social deficit, feeling hopeless, unable to act, react, or interact makes for constant outsiderness. That there is no treatment for avolition makes it doubly hard to get back inside. Psychotherapy complements medication and in some cases may assist individuals in developing strategies to handle the symptom, but that’s as far as it goes. One challenge for me is the emotional cyclone I get swept up in when I try to accept that I’m living with a chronic and debilitating disorder, and that avolition, among other symptoms, is a component. It becomes a roomful of mirrors folding in on itself with no stable image, no focus.

Word salad and poverty of will are only two of the symptoms that stand between me and being an insider. The name of my diagnosis tends to carry a lot of misunderstanding with it, forcing me to the outside when I desperately want to be in. Friends in the know and like-minded individuals are willing to overlook the stigma. They see me as an individual regardless of my having schizophrenia. I talk about the challenges I face so that they can better understand what I’m going through, and they respond with kindness. That’s when I feel included—when I’m understood and accepted on the terms defined by my illness with the person that I am in spite of it.

So what does it feel like to be included? It’s a rich, rewarding connection. Inclusion feels like the kind of acceptance that I dream about, where I can just be the best version of me and have that be all right.

The hard part is remembering that I’m included. I can’t always do that and I don’t always trust it. Negative symptoms tend to scrunch all that insider- ness into a ball and toss it in the wastebasket. The only way I know to avoid those feelings of sadness and loneliness is to address them directly with my friends when we’re together. Not to focus on any one thing, but to look at the big picture head on and try my best to stay in the moment. Not hyper- vigilant “in the moment”, but right there in the sweet spot where I can sense that I’m on level ground with my peers and not some peculiar person for the sake of peculiarity.

I need to feel a part of something. When I can’t find that feeling, I need it to come from without. If my friends and family trust me to stay integrated enough to communicate my needs and wants, then I’ve done the hard work required to complete the loop. If I need to work harder, then that’s okay. It’s also okay to ask for what I need. That can be a challenge, because I shortchange myself all too quickly, assuming that I’m only seen as mentally ill. It’s a private tug-of-war, but most days I can win that internal struggle and come in from outside. Sometimes I can accept acceptance. Those are the better days.

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Hearing Voices

I kept up my pattern of not admitting when I was feeling depressed, of hiding my illness, of not disclosing my symptoms even when asked directly. I kept saying, “I’m okay,” even when I was not okay because I did not trust that doctors would respond to my mental health concerns with empathy. I felt ashamed of admitting when I was not coping with stress and emotions effectively and I was afraid they would judge me or push me to try another medication. In church I did not trust that my pastors would respond with belief in the validity of my illness. I was afraid they would blame me.

“Don’t tell them you hear voices. They won’t understand. They don’t believe in the spiritual,” my mother whispered in my ear as she hugged me tight. Those were her last words to me before she left me at the mental health center after I had attempted suicide. I was just sixteen years old.

I knew from her words and the strength of her embrace that she was afraid of letting go, afraid to leave me there, afraid of misunderstanding— and ultimately afraid of misdiagnosis due to the differences between the communities of faith and communities of science.

I was afraid too, so afraid.

I did hear voices.

In the darkest moments of my depression they would come — terrible and taunting whispers, calling my name, telling me over and over “You are going to die.” Though they were whispers they were insidious and inescapable. My radio turned to the highest volume couldn’t drown them out and a pillow over my head could not muffle their sound.

My faith taught me these voices were demons, the forces of evil sent to torment, and I accepted this as true. I did not understand that these auditory hallucinations were a symptom of severe depression, rather I saw them as evidence that I was wicked. I did not see myself as someone with an illness, but as a moral failure.

So when my doctor asked me, “Do you hear voices?” I remembered my mother’s warning, looked at my feet, and shook my head no. I did not want be diagnosed with an illness when I believed that the reason I heard voices was that I was being punished for my sins.

And when my pastor came to visit and asked me, “How are you doing now?”

I looked at my hands and mumbled, “I’m fine now. Thank you.” I did not want to acknowledge how weak my faith was in the face of the torment I was living in.

I left the hospital with another set of medicines that didn’t touch the depression. Over the next four years the voices would leave for long periods when I was not depressed only to return as the depression returned. Mercifully, these hallucinations were not an all the time thing for me. They were rare, but intense and terrifying– often driving me to hurt myself.

Then gradually as I learned to live without harming or starving myself, my depression became milder, and I never heard voices like that again. It was once I had stopped hearing voices for a few months that I connected how the voices came only when I was severely depression. I stopped blaming myself and refused to consider the voices I had heard as a sign of spiritual failure.

But I kept lying about how I was to my doctors and my pastors.

I kept up my pattern of not admitting when I was feeling depressed, of hiding my illness, of not disclosing my symptoms even when asked directly. I kept saying, “I’m okay,” even when I was not okay because I did not trust that doctors would respond to my mental health concerns with empathy. I felt ashamed of admitting when I was not coping with stress and emotions effectively and I was afraid they would judge me or push me to try another medication. In church I did not trust that my pastors would respond with belief in the validity of my illness. I was afraid they would blame me.

Ultimately I lied about my condition because knew the labels that often come along with admitting to seasons of depression, to fear of relapse into eating disorders, or to a history of auditory hallucinations. I did not want to be seen as weak— I wanted to be seen as strong and stable.

The problem is that lying left me to face an illness alone. If I had told the truth about the severity of my depression during my teenage years, there might or might not have been more effective treatments available to me; but there certainly would have been more emotional support available to me when I was experiencing auditory hallucinations.

It is hard to admit to the things we have been taught to feel shame about, but telling the truth is often the key to change. I no longer lie about mental illness or downplay my symptoms. I have come to a place where I allow myself to recognize the strength it takes to reject shame and reach out for help.

For so many years I lived sure of the fact that if people really knew the extent of my depression they would reject me, but when I finally opened up my experience was the complete opposite. Transparency about how mental illness affects me has brought into my life deep friendships. I know now that I am not alone and I do not have to face depression alone. When depression comes instead of feeling trapped in my own fear and shame I am surrounded by people who care about me, people who challenge me to keep reaching out.

So when I feel ashamed and I want to hide I tell myself, “Don’t let fear of stigma be what keeps you from telling the truth. Don’t live alone with mental illness. You matter to so many people. So many people want to help, but only you can tell them how.”

And I pick up my phone— and make a call— and tell the truth about mental illness.

 

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EMDR and Dr. B

After years with my previous therapist, it is strange navigating a new therapeutic relationship. Firstly, it stings a little, breaking up with an old therapist. My internalized shame told me that I hadn’t tried hard enough. My shame told me I was unfixable. My shame told me my trauma was too ugly to be examined. I know, intellectually, that these things aren’t true, but trauma loves shame. Secondly, working with someone new comes with its own set of baggage. It is always a little bit unnerving, unzipping yourself and showing a relative stranger all your complicated clockwork parts: your past, your broken pieces, your hurts and bruises.

After three years with my therapist, I have begun working with someone new. I didn’t leave my previous therapy because I was unhappy; I left because we hit a bit of a brick wall. Each time I would begin to reveal the darkest parts of my past, I would break. Something inside me would crack open and the hurt would spill out, coloring all the progress we had made. A new kind of trauma was born. Fresh trauma from reliving old trauma. We tried desperately to control the pain, but it began to take on a life of its own. It seeped into my everyday world. All my old triggers returned. It began to affect my marriage, my relationships with family, and my life outside of therapy. We tried locking my trauma in a little wooden box, then closing it in a file drawer in my therapist’s office. I tried leaving it there, for her to watch over, protecting me between sessions. It didn’t work. My perpetrator followed me home. He whispered all his old lies: you deserved it, you were asking for it, what did you think would happen, after all. Trauma is a liar, a manipulative trickster. Often, it cannot be compartmentalized. Trauma picks the lock and wriggles out. After a long talk, my therapist and I agreed it was time to try something new. In my case, we chose Eye Movement Desensitization and Reprocessing (EMDR).

In a nutshell, EMDR is a specific kind of therapy that can help people heal from emotional distress that results from trauma. As the name suggests, eye movement is a fundamental part of this method. After you and your therapisst decide which memory to target, you are asked to think about that event. While that event it fresh in your mind, you are asked to track your therapist’s hands with your eyes as an object is moved back and forth across your field of vision.  As this happens, for reasons thought to be related to the same mechanisms associated with Rapid Eye Movement (REM) sleep, internal associations are made and you begin to process the memory. I needed to find someone new for this kind of therapy. After a good bit of work, I finally found Dr. B, who practices EMDR, as a specialty.

After years with my previous therapist, it is strange navigating a new therapeutic relationship. Firstly, it stings a little, breaking up with an old therapist. My internalized shame told me that I hadn’t tried hard enough. My shame told me I was unfixable. My shame told me my trauma was too ugly to be examined. I know, intellectually, that these things aren’t true, but trauma loves shame. Secondly, working with someone new comes with its own set of baggage. It is always a little bit unnerving, unzipping yourself and showing a relative stranger all your complicated clockwork parts: your past, your broken pieces, your hurts and bruises. Finding just the right therapist can be difficult. Sitting through your first get-to-know-you session can awkward, uncomfortable even. Finding the right therapist is a strange mix of chemistry and qualifications. In the past, I had a list of requirements. Among the many things I thought I needed, I believed a therapist must be female, because of my kind of trauma. In the end, I chose Dr. B. He is a he, which was an unexpected twist, to be sure. I am hopeful that I can reach past fear and embrace the work we have begun together.

I have grown quite fond of him, in only a short time. He is smart but also very soothing. He challenges and affirms me. He has a creative approach to our work together. He lets our time unfold organically. In my case, he is less goal-oriented than I am used to. He doesn’t assign homework. He lets me take what I can carry, and asks that I leave the rest for another day. There are no locked boxes or file cabinets. He allows me space to feel all of my feelings, then lay down the parts too heavy to carry home with me. I am grateful to S, my previous therapist. She gave me a gift I didn’t understand until afterwards. She let me move on to a new kind of work. She allowed me to face my fear of rejection. She has proven to me that I am more capable than I thought. She acknowledged my immense pain, and directed me to a new kind of healing. By letting me go, she proved our time together had been successful. I have so much work to do, but for the first time in years, I think I am ready. Today, I am tired enough to try something new. Today, I am simply too tired not to try something new. I am ready. I am willing. I hope those things will be enough.

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Perspective: A Year In Review

I had been comfortable living my life in the fringe of psychosis. I worried that my art would suffer. But I’ve managed to surprise myself as a medicated man in that my creativity has not faltered. Quite the contrary—my artistic focus has increased, and I feel like I am doing some of my best work to date. Medicine was key in discovering newfound stability.

I’ve heard many people say that 2016 was one of their most difficult years. For me, it started out as one of the most harrowing. In January I had attempted suicide while in the fog of a psychotic break, followed by a stay in the psychiatric hospital. From there I began in earnest a regimen of medications that have had a profound effect on my life. I say “in earnest” because I was finally ready to surrender to the truth of my diagnosis. I wasn’t going to make it on my own.

As I engaged in follow-up care, my life took on new meaning. My case manager helped me to get better medical coverage, get on board with the food stamps program, and increase my disability income. It took some work to get those strategies in place, and it takes some effort on my part to keep them current, redefining self-care in the process. Monthly trips to the psychiatrist were in order—making sure that my body was acclimating to the medications was paramount.

I’d been a staunch believer in the Big Pharma Conspiracy that doctors and pharmaceutical companies were “in it together” and that profiting from mentally ill people was their primary motivation. All it took was riding out the initial minor side effects and finding my sea legs a few months into my augmented treatment plan to realize that my previous noncompliance was unwarranted and quite possibly damaging.

I had been comfortable living my life in the fringe of psychosis. I worried that my art would suffer. But I’ve managed to surprise myself as a medicated man in that my creativity has not faltered. Quite the contrary—my artistic focus has increased, and I feel like I am doing some of my best work to date. Medicine was key in discovering newfound stability.

Admittedly, I don’t like the added physical weight that I now carry, or the nervous trembling that has become a part of the new normal. The somnambulist-like dullness that sometimes accompanies my thoughts is disconcerting, but I’m learning through research and psychotherapy that those occasional lulls in perception have likely more to do with the nature of my disorder than with the side effects of medication.

In therapy I have begun the process of EMDR (Eye Movement Desensitization and Reprocessing) to treat my trauma issues and reroute my responses to psychological stress. So far the results have been successful, and I look forward to experiencing my memories in a less distressing way.

The public housing authority recently confirmed that they are ready to interview me for placement in a rent-controlled apartment. Hopefully, I might be moving as soon as next spring. It is as if all the parts are falling into place, coming together to make my life more doable, given what I deal with as a person living with schizophrenia.

I finished my book this year and have submitted the manuscript to the right kind of people to help me see publication be something more than just a dream. I’d never have been so bold or brave before the meds. I’d still be second guessing my abilities as a writer, attaching my self worth to that, and generally losing faith as self-stigma increased. Now all I need to do is follow the next indicated step.

2016 saw the formation of The Breakfast Club: two friends who are a part of my support team meet with me at my favorite restaurant every other week. It gives me something to look forward to, and an opportunity to interface with people the way I imagine a normal person would. I don’t worry so much about being the mentally ill guy. I flip the perspective and feel real.

I’m learning to take care of myself. I don’t shy away from a new task because of self-doubt or worry. My anxiety appears to be in check, as does my depression, and my delusional states. Over the past eleven months my personal chemistry has a newfound equilibrium. With the introduction of balance I find myself feeling more capable and serene.

I’m not glad that I tried to take my life, but I realize the gift in my terrible break from reality. I have order where there once was chaos, strength where there once was fear. I have hope where there was none. I have faith.

Looking back, I get to look ahead. I anticipate tough times, but I know I’ll get through them. Paranoia is the first word in my diagnosis, but I won’t let it be the last. I am witnessing the results of my treatment plan in action, something I hadn’t seen until now. So if I keep at it I’m sure that more good things will come. Good or bad, you can count on me to write about it.

Happy New Year, everyone. Here’s to a stigma-free future.

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Personality Trait or Disorder Culprit?

It never seems to be my fault no matter what. At least that is the lie I tell myself. I either blame the disorder, or too often, the other person. So I have been trying to really recognize whether my behavior is simply a flawed, but unique, personality trait. Or whether I need to find more direct ways to master my illness’s distinct idiosyncrasies.

I am constantly conflicted as to whether something I do, or don’t do, or a way in which I react, or don’t react, is a derivative of my inherent personality or if it is a standard trait of having bipolar disorder. And of course, without hesitation, it is always the unfavorable parts of me that I immediately attribute to being bipolar.

Among the most unfavorable behaviors is my anger. Every time I get frustrated with something, or someone, and it evolves into a rage of internal anger, I tell myself, and the person who may be involved in the situation, that I can’t help it. That it is because of my bipolar that I cannot handle the stressful situation appropriately. That it’s because of the illness that I am unable to control my anger when a stressful situation gets out of hand.

And when I say stressful situation, I pretty much mean anything that happens in my daily life that is unexpected and not part of my routine. Like a long phone call that wasn’t on my schedule. Or having to deviate from my meticulously crafted work schedule for an unplanned personal errand. Other things that fuel the fire are when things are out of order. Like walking into a room and all of the curtains are closed, where I prefer all of them to be opened. Or finding the kitchen counter covered in crumbs or simply a dirty plate. Or the ultimate stress-kicker: multiple pairs of shoes tossed throughout the house instead of being put away neatly. I think it is clear to see why I think these reactions are irrational therefore must be directly connected to a typical bipolar disorder trait rather than to a quirky or particular personality profile. Right?

But what truly worries me is the serious bouts of anger and overwhelming frustration when I cannot even speak, let alone begin to find any order in my head to calm the situation. It is when one or two or many of these small divots in my expected routine take place one after the other that my anger and frustration build. If I am alone, I am able to angrily put things in the order I prefer them in, eventually finding calmness in the cadence of tidying and organizing. My concern, that brought me to really attempt to analyze these behaviors, is when there is another person on the scene that I can’t help but direct my anger towards in muddled and fumbled irrational sentences. Or complete burning silence.

It never seems to be my fault no matter what. At least that is the lie I tell myself. I either blame the disorder, or too often, the other person. So I have been trying to really recognize whether my behavior is simply a flawed, but unique, personality trait. Or whether I need to find more direct ways to master my illness’s distinct idiosyncrasies.

Either way, I constantly feel that my reaction to things being not how I want them, or expect them to be, means there is something wrong with me. Passing it off and blaming it on my bipolar so I can write it off is just the easiest thing to do. But it no longer feels like the right thing to do. I can barely get the words from my head to the paper, let alone out of my mouth. But it is time I take responsibility for my actions, no matter what the trigger is.

I’ve come to realize that even if my extremely frustrated anger with very simple things is tied into the way my mind works with having bipolar or my personality, that I am still responsible for those actions, and reactions, and that I must take steps to address that and find ways to deal with it. That may mean to create even more routine in my life to rule out as much of the unexpected as possible. And that may also mean I need to proactively come up with ways to deal with those scenarios before they happen, so when they do arise, I will have better tools to handle the situations. Which are every day.

In the end, I feed off the challenge. If I am not constantly making incremental changes in order to better myself or my surroundings, then I get more and more depressed. This is definitely the disorder – also known as being in a constant low-grade dysphoric mania, too agitated to sit still in life, unless depression has me pinned down to the couch. Luckily, most of the time this keeps things moving, deadlines achieved and the house clean. It is when I stop trying to improve and fine-tune things that I get bored and become unmotivated. I don’t want to just live with bipolar disorder, I want to thrive with it. And I know that this behavior is straight from my personality index, and it’s called being stubborn!

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An Ounce of Prevention is Worth...

Law enforcement agents do have the right to protect themselves from "imminent" violence aimed directly at them. However, I have to believe, in my clinical opinion, that much more mental health education and training, including role-playing exercises, need to occur to greatly enhance their ability to manage these events more effectively. It's impossible to expect all to become mental health experts, but their overall responses can improve through this enhanced educative experience across all law enforcement in the country.

Prevention is defined as “the act of stopping something from happening or arising.” Examples include:  “This vaccine is prevention against a disease,” or “Keeping a fire extinguisher in your kitchen can aid in the prevention of a serious fire.” I believe that the art of prevention and early detection are the keys to minimizing, if not eliminating, the impact of any illness be it physical, psychological, or a psychiatric condition or issue.

In my last blog, I raised the dilemma about how to break through the internal resistance of an individual who is experiencing paranoid delusional thoughts or undergoing the throws of mania. I did not mean to present it rhetorically – it is, potentially, a grave concern for the person’s wellbeing and / or their significant other’s welfare and safety. The pressure of the battle waged in the minds of an individual dealing with these symptoms is, to say the least, intense and, generally, all-consuming. Suicidal, aggressive, and even homicidal thoughts can flood anyone in that moment and leave them feeling extremely vulnerable. Often, they perceive that their loved ones or the entire planet’s welfare is at stake! At that point, moods can shift very quickly with one’s thoughts, and an action based on distortions of reality is possibly only one-second away. Family members, friends, and sometimes strangers can become victims in an instant.

I feel a great deal of empathy for those who have to endure these extremes of thought and emotion, which become fictionalized in a distorted mind or otherwise. Often, the person believes to their very core that they are on the defense when, in actuality and within the realm of true reality, they sadly and tragically acted from an offensive place. I wish to help in the prevention of these highly avoidable events. Challenging the distorted notions head-on usually leads to a person taking an even further entrenched position, and, too often, a person becomes agitated by the challenge.

We all see the horrific outcomes of these types of events almost daily on the national news. Matter after matter in which a person struggling with their mental illness is shot and wounded by police officers or killed right on the spot as they posed a risk to the safety of the police and / or the community. I do not wish to cast any disparaging remarks regarding who is at fault as each of these events are unique to the circumstances. Law enforcement agents do have the right to protect themselves from “imminent” violence aimed directly at them. However, I have to believe, in my clinical opinion, that much more mental health education and training, including role-playing exercises, need to occur to greatly enhance their ability to manage these events more effectively. It’s impossible to expect all to become mental health experts, but their overall responses can improve through this enhanced educative experience across all law enforcement in the country. An all-day 8 or 16 hour training is not enough. Nor would that amount of investigative training turn me into a police detective!! After 200 hours of training as a Child Protective Services Worker in San Diego County, I was qualified to handle the responsibilities involved in investigating cases of suspected abuse and neglect. When I was unsure, I consulted with those with more knowledge in my field as well as District Attorneys and Public Defenders. My current local area, Solano County, offers a training for anyone in the community entitled “Mental Health First Aid.”

So, getting back to my original issue, my experience has shown me that once a person is “deep into their symptoms” and overwhelmed by the intensity of what they are dealing with in their minds, it is almost impossible to convince them of much at that point. Medication becomes critical, and a compassionate, non-confrontational approach is best. In extreme cases, restraint may become necessary during a hospitalization to prevent self-harm or violence toward others. This is why I believe that mental health education is needed from junior high school forward in academic curriculum with role-playing built into the education process. Anything that can aid in desensitizing the stigmatization aspects of talking about mental illnesses helps diminish the potential of matters that I described earlier from occurring in the first place. Bring Change 2 Mind is creating an entire program for high schools and colleges to assist in the formulation of mental health awareness, help start the dialogue, and reduce shame / stigma. Again – really, really sweet and gentle people living with mental illness can find themselves involved in a violent, tragic event when under extreme internal pressure. They could be hurt or killed by the police, or hospitalized multiple times. Paranoid delusional thinking, command auditory hallucinations, and / or mania can flare when one is either not medicated or under-medicated (ineffective response). Education and helping those learn healthier coping skills and techniques toward a place of true recovery and improved self-control are the keys to success.

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Wonderland

Then there’s working memory and episodic memory. I can’t hold onto a phone number, much less a name. Storage, retrieval. How am I supposed to recall the details? Just smile and pretend that it’s the same for normal people. I pad my excuses with self-depreciating humor. No one’s the wiser.

The longer I stay with my regimen of medicines, and the more involved I become in psychotherapy, the clearer my path becomes to me, especially what’s been missing. Not content to live with the ice cream scooped chunk of experience hollowed out of my past, I am trying to reconstruct a life I’ve lived in twilight. At once I find myself filled with longing, sorrow, confusion, and the inevitable slow burn. For the things I’ve lost. For a life un-lived.

It all comes down to cognitive problems, how information got encoded, where processing speeds got derailed, and how that influenced my interactions with the world around me. Getting lost in the middle of a task, not understanding emotions—earmarks of cognitive dysfunction. Since my youth, since before my first psychotic breaks, typical of schizophrenia in its earliest stages, held over into my adult life. Hard to work, study, or make friends. Socially awkward in a concrete sense. The core of the disorder. The invisible symptoms. Unknown to the public. Obscured from the patient’s view. Dementia’s ugly doppelgänger.

So of course I choose to talk about it. Because it’s there. Because I’m here. Dealing with a disorder which lacks the essential abilities for everyday functioning. Something I rarely discuss. Something I wish wasn’t true.

Presently, there is no pharmacological treatment for cognitive problems in schizophrenia. Some success has been had with atypical antipsychotic medications, but the research results are far from a “cure”. What we do have, however, is a checklist of deficits and accompanying examples to aid in illustrating the problems faced by consumers. With regards to processing speeds, for example, my inability to participate in a conversation because I can’t distinguish signal from noise when distractions are present introduces a challenge. The telephone ring is the cat mewling is the clock chiming is the sentence coming out of your mouth. Although many mental illnesses are affected by problems with processing speed, schizophrenia appears to be more profoundly disrupted.

Managing money or planning a trip, examples of executive functioning, are a wash for schizophrenics, and I’ve definitely had my run of bad luck there. Reasoning and problem solving go the way of fancy. Lost with or without a map. So I take notes and stick them to every surface in the house, carry instructions in my wallet. I use a handicap where others play the game by rote.

Interpreting expressions is akin to watching the family dog watch the television. Social cognition is a nightmare’s daydream. Is that fear? Is it anger, surprise, or happiness? What is your face telling me? Is that a test pattern? Are we off the air?

My boss would give me spoken instructions and I’d be back in less than five minutes asking him questions about the very thing he’d just explained. Every day. Often more than once. Verbal learning out the window. Recalling the PowerPoint would be a total no-show as well. That’s under the domain of visual learning. Shot down before it started. Two more contributing factors to my not keeping a regular job.

Then there’s working memory and episodic memory. I can’t hold onto a phone number, much less a name. Storage, retrieval. How am I supposed to recall the details? Just smile and pretend that it’s the same for normal people. I pad my excuses with self-depreciating humor. No one’s the wiser.

If these all sound like the negative symptoms of schizophrenia, you wouldn’t be wrong to think so. There’s some common ground in there, like the lack of emotion or the poor social functioning. It doesn’t mean I’m robotic or unable to feel. I just don’t have a template. My workaround? I watch a lot of movies and study the actions and reactions of the actors in relation to their emotional situations.

Our cognitive abilities are what set us apart from the rest of the life forms on this big, blue marble. The schizophrenic with their cognitive dysfunctions might seem less human to other bipeds at the shopping mall. On the surface. Peel away the stigma and we’re just like the rest of the shoppers experiencing the holiday music wafting through the stores, the gentle ring of Santa’s bell by the charity basket, the muted waves of conversation washing up on the shores of the gift wrapping station. We maybe get a little glazed over, lost in the window displays, but then that’s the childlike wonder of Wonderland, isn’t it? Maybe it’s best just to run with the gestalt of it all. There’s no instruction manual to have to memorize and forget immediately afterwards. No perfect way to focus on the various sights and sounds. Nothing has to happen right now except the here and now. I may never find that life I lost, but I can enjoy the life I’ve found.

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Striving To Make A Change by George Patrick Hutchins, UBC2M Co-Director

Learning about stigma, and how a person’s perceptions and attitudes toward someone with a mental illness is the biggest barrier towards them receiving proper treatment, deeply concerned me and lead me to seriously question how I could help make a change. I believe that my years of daily experience of what it is like to live with someone suffering from a mental illness and my passion for helping others obtain proper care have put me in a unique position to show compassion and make a lasting impact for those suffering from and indirectly effected by this issue.

My name is George Hutchins, I am in my sophomore year at Indiana University, pursuing a degree in Biochemistry with a focus on pre-medical studies. I also serve as one of the Co-Directors for U Bring Change 2 Mind (UBC2M), the collegiate level branch of Bring Change 2 Mind that was started at IU, and is targeted toward reducing mental health stigma specifically on college campuses. My experience with mental illness dates back to watching my mother struggle with clinical depression for several years, but my interest for getting involved and making a significant difference for those struggling as my mother did, was not fully ignited until I took Dr. Bernice Pescosolido’s Medical Sociology class. Learning about stigma, and how a person’s perceptions and attitudes toward someone with a mental illness is the biggest barrier towards them receiving proper treatment, deeply concerned me and lead me to seriously question how I could help make a change. I believe that my years of daily experience of what it is like to live with someone suffering from a mental illness and my passion for helping others obtain proper care have put me in a unique position to show compassion and make a lasting impact for those suffering from and indirectly effected by this issue.

Going forward, our vision for UBC2M is to fully engage the entire student population at IU, tapping into the talents of our brightest minds and using those talents to make this the generation that ends stigma for good. To do this, we plan on enhancing the membership experience to make the club more worthwhile for the students that dedicate their time and efforts to making stigma elimination a reality. The goal of improving mental health treatment is one shared by so many, it’s only a matter of providing these individuals the proper resources to be effective champions of change. Additionally, we plan to reach out and connect with other student organizations, to create a cohesive network with the common goal of making IU the first stigma free campus.

None of our efforts, nor the successes we have already had would be possible without the amazing support of Ms. Glenn Close, Ms. Pamela Harrington,  Bring Change 2 Mind, or our university officials at IU like Dr. Pescosolido. Equally as important are the donations and the roles as advocates that many of you play. Your positions in society allow you to have a much farther reach, in some cases, than myself and my fellow students. With that being said, reducing and eliminating stigma will not be an easy task by any means. But I am confident that the resources and desire to make a difference that we all share can lead to us achieving our common goal and making America an environment where those suffering from mental illness can receive the proper care, without fear of stigma, and go on to lead fulfilling and limitless lives. It starts by making a change person by person. That is exactly what we have been doing with UBC2M, and that is exactly what we will continue to do. Thank you all so much.

In 2014, BC2M developed UBringChange2Mind (UBC2M), a four-year student-led intervention and assessment research pilot program at Indiana University whose goal is to develop, test, and evaluate the efficacy of anti-stigma program materials. UBC2M is the first effort of its kind to develop a systematic program aimed at reducing the stigma of mental illness on a campus setting. Once the pilot phase is completed, it will be packaged and distributed for use by BC2M, free of charge, to colleges and universities. Dr. Bernice Pescosolido, the Director of Indiana University’s Indiana Consortium for Mental Health Services Research, is overseeing the research component of the program. 

Please consider making a donation today to support the UBC2M Program, and BC2M’s mission to end the stigma and discrimination surrounding mental illness. 

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An Act of Bravery

I knew my confession was motivated by the hope that I could change the trajectory of my life. I wanted to find a way out of depression more than I wanted to keep hiding my compulsive self-injury. I wanted an end to secrets, an end to shame. I wanted my classmates to look me in the eye and accept me for who I was, not for girl who I pretended to be.

She sat cross-legged on the flooring, blocking the doorway. “I’m not moving until you promise me that you will call them.”

The flyer for the teen mental health resource center felt heavy in my hands as I methodically processed the questions bombarding my mind:

“Why had she given me this flyer?” I knew the answer to that. She cared about her students. She taught us how to sing together, but more importantly she taught us to look out for each other, to care for each other. My teacher wanted me to get the help I needed— apparently so much so that she was willing to block my path of escape until I agreed to call this mental health hotline.

“Why had I confessed to my class about my struggle with cutting?” The answer to that question was also easy. Though internally I wanted to tear myself apart for the “stupidity” of sharing my secret with my classmates in the women’s choir, I knew my confession was motivated by the hope that I could change the trajectory of my life. I wanted to find a way out of depression more than I wanted to keep hiding my compulsive self-injury. I wanted an end to secrets, an end to shame. I wanted my classmates to look me in the eye and accept me for who I was, not for girl who I pretended to be.

“What am I going to do now?” That was the question for which there wasn’t an easy answer.

My hands were sweating now as tried to figure out how to make my case. I knew that although the mental health screening was being offered as a free resource; the visits to the doctor’s office, the medications, and the counseling needed to treat my depression would be expensive. I did not think I was worth it. I did not want to be a burden to my parents.

I began to mentally berate myself, “If only you weren’t so selfish Sarah, you could stop cutting yourself on your own. You could stop feeling depressed and focus on helping your family.”

“Sarah,” my teacher called my name— mercifully interrupting the internal cacophony of my self-loathing, “I am not moving until you agree to call the mental health resource line. Just give them a call. See what they have to say.”

I trembled and my eyes filled with tears as I nodded, “Okay. I will. I promise.”

“Okay then,” she said and I could see sadness in her eyes as well, “Let me know how you are tomorrow. I believe in you. You are going to make it through this. You need to get treatment.”

“I know,” I said my voice wavering. I felt tired– too tired to protest that I was not worth the inevitable expense involved with treatment. So I left having resolved to keep my promise to the one person who cared enough to confront me with the truth.

14 years later I still think about that day my teacher intervened for my mental health. The trajectory of my life at 16 was bleak and all the obstacles that I predicted in accessing mental health care did come to pass. It was expensive and mental illness continued to be viewed by my family as (at least partially) a moral failure, but I did not want to break my promise to my teacher.

The very fact that she had cared enough to take the time to talk with me after class chipped a hole in this lie that I had come to believe. I had believed I wasn’t worth anyone’s time or effort– especially now that I was covered in scars, but my teacher’s actions said to me —“I still think you are worth it Sarah.” It mattered to me that my teacher took the time to talk to me about mental health and that she believed I could get better. Even though I wasn’t sure I believed that for myself, her faith kindled in me a hope that refused to give up. Seeing myself as someone who mattered to others was a beginning, a small internal shift that paved the way for the hard work of learning to think kind thoughts about myself.

These days I remember my teacher when I think about how many people live with depression during this season. In one conversation my teacher communicated to me that she saw how much I was struggling and that she believed there was hope for me. Like her I want to be available to the people in my life who are facing mental illness right now. I want to take the time to see them, to listen. I want to offer the hope that mental illness is treatable and the truth that their life is worth fighting for. In our culture where often it is easier to turn a blind eye to mental illness it is an act of bravery to reach out and start the conversation about the importance of mental health. I know firsthand how much it often matters.

 

 

 

 

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A Better Year by Kayla Kitchen, LETS BC2M Club Member

Stigma exists. Two out of three people who are affected by mental illness don’t seek help or treatment. The day I received treatment was the day I took my first step towards recovery. Although some days I tend to take a step back, I know I will wake up the next morning and take two steps forward.

On November 2nd of last year, I was admitted to the hospital for attempting to take my own life. Mental illness is not a phase, or simply a “bad day”. It is something that many people, my age and beyond, are affected by. I was diagnosed with clinical depression and severe all around anxiety at the age of only 13.

Mental illness is a disease. After going through what I did, I have now only begun to realize that my mental health comes before everything. Why is it that when someone is diagnosed with cancer, everyone rushes to their aid; but when someone is diagnosed with depression, everyone seems to run away?

Stigma exists. Two out of three people who are affected by mental illness don’t seek help or treatment. The day I received treatment was the day I took my first step towards recovery. Although some days I tend to take a step back, I know I will wake up the next morning and take two steps forward.

Life changed for me when I was released from the hospital. I finally started taking care of myself. I play with the most amazing softball team. I’ve learned countless instruments. I’m publishing a book, and am currently writing my second. I am partnered with Bring Change 2 Mind, a mental health organization dedicated to helping end the stigma on mental illness. I have recently been elected to the LETS BC2M Teen Advisory Board, where students like me will take the first step into bringing up the conversation about mental health within our community and eventually the nation.

The LETS BC2M Program has helped me in so many ways. Not only have I learned about my illness and why I feel this way, I have also learned how to grow and develop as a person despite my diagnosis. As part of BC2M, I hope to share my coping skills and help others who suffer with mental illness grow as I have. You are not alone. Whether you are diagnosed or not, your illness is relevant. How you feel is important. Don’t live life hidden under the covers of your bed when your thoughts are simply weighing in on your lungs and it feels too hard to breathe. Talk to someone. Get help.

With 56 schools on board this year, we plan to branch out nationally next year. The LETS BC2M Program will make a ginormous impact on the lives of many, as it did mine. Together, we can end the stigma. Together, we can get through this.

Here’s to one year being happy and healthy, regardless of the bumps and bruises along the way. My mental illness does not define me. I am strong. I am worthy. I am powerful. But most of all, I am proud of the person I have become.

kaylakitchen

LETS BC2M is a high school program dedicated to erasing the stigma of mental illness by increasing education and awareness, fostering student empowerment, building mentoring opportunities, and encouraging youth to change the perception of mental health in their schools and communities.

This student-led club initiative allows all teens the opportunity to learn and explore more about mental health topics in a safe and supportive environment. As students engage and talk about mental health, we allow them to normalize the conversation and eliminate stigma within their community. 

Please consider making a donation today to support the LETS BC2M Program, and BC2M’s mission to end the stigma and discrimination surrounding mental illness. 

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My Love Affair with Mania

I was diagnosed with bipolar disorder many years ago but I was sick for much longer. I have known that something was not quite right for most of my life; I just didn’t know what that was.

I was diagnosed with bipolar disorder many years ago but I was sick for much longer. I have known that something was not quite right for most of my life; I just didn’t know what that was. I spent a great deal of my twenties and thirties wandering from doctor to doctor. When I felt depressed, I found a psychiatrist or general practitioner who would prescribe an antidepressant. When I began to climb out of the hole, I would convince myself that nothing was wrong, and I would stop taking my medication.

Even after two overdoses, two hospitalizations and extended periods of suicidal ideation, I somehow managed to avoid much follow-up care. The trick was that I rarely saw the same doctor twice. The problem was that I never saw a doctor about my manias, at all. In my mind, I couldn’t think of a reason why I should. When I was manic, I felt alert, quick, and seductive. My thoughts were clearer, people more interesting, new experiences were irresistible; things that had previously dragged across the surface of my life seemed to glide smoothly. I was a better version of myself.  Or at least that’s what I thought.

It wasn’t true, of course. I can’t stress enough how truly terrible an actual manic episode can get, when left untreated. Still, anything that didn’t feel like soul crushing depression felt like an improvement. Eventually, each manic episode would lead to disaster. I would burn my life down around me. I would spend money I didn’t have, hurt people who cared for me, discard jobs, lovers and possessions. Often, I would lose touch with reality. I could be mean and quick tempered but I could also be sharp and exact. None of that mattered once I reached the pinnacle of my mania. Always, I would hurt myself and others. Then, I would begin to skydive without a parachute – straight towards the life I had just destroyed. Without explanation, I would find myself in the middle of a mess that I was responsible for creating. I didn’t intentionally treat myself or my illness this way. I didn’t even realize there was an illness; not one with a clear pattern, anyway. I simply couldn’t get enough distance from the eye of the storm to see with any clarity what was happening around me.

Thankfully, an astute doctor at a local free clinic began to ask the right questions. Why did you stop taking the antidepressants you were prescribed last year? Why did you hurt yourself? Why aren’t you working? Tell me about your divorce. All these seemingly unrelated questions led to a clearer picture of what was happening. This wonderful doctor gave me a name which would finally explain a life lived in peaks and valleys: Bipolar Disorder. While talking with him about this illness, I realized that I had experienced a lifetime of both manic and depressive episodes; though to be honest, the depression was more frequent and lasted longer.

Even after my initial diagnosis, I still found it rather difficult to maintain any semblance of balance. The reason my disorder was so hard to get under control was because each time I got depressed, I would romanticize my manic episodes. I’d want the first days, before things went wrong. I’d convince myself that this time would be different. This time, I knew better. I swore I’d start taking the mood stabilizer again; the minute things started getting bad. The mania felt like a drug and when I was most sad, I missed the high. I know it might seem strange to say but the only way I could begin this new journey was by allowing myself time to grieve the loss of my manias. That kind of madness can be intoxicating. I needed a minute to say good-bye. Then, as quickly as possible, I made tracks, putting as much distance as I could between myself and that part of my illness.

After a few awkward blind dates with random psychiatrists, true wellness began to find its way into my life under the care of my current doctor. This began the next stage of my journey: medical continuity. I’d never heard the term medical continuity until I began seeing Dr. K. From the beginning, he was very clear with me that although I didn’t have to continue seeing him, I needed to find one psychiatrist and stay put. I needed to be able to track my episodes of depression and mania. I needed a record of which medications worked and which didn’t. I needed my medical history and current treatment plan in one place. He was right. Since then, he’s been right about a so many things.

For me, being sick required very little effort; getting well was another animal altogether. Following a treatment plan is where the real work begins. Building a care team is just as important as finding a doctor: this means a therapist, a general practitioner and, when possible, a support system of friends and family. Bipolar disorder can be treated, but in my case, it is never very far away. Medical continuity is the only thing that keeps my illness at bay: show up for your appointments, take your meds, avoid your triggers and always, always be honest, with your care team and yourself. Ultimately, I began to accept that mania might seem enticing in hindsight but my memory bears little resemblance to the reality. Wellness began with a single step – understanding that I needed something fundamentally different- but it only worked when I was willing to reach out and embrace a new version of myself; and to be perfectly honest, even I can see that this version of me is better.

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Loneliness

As I explore the functionality of loneliness in my life, I also look to accountability. Do I try to put myself out there, and do I do so without expectation of return? Yes, and yes. So why do I feel alone? Is it because others can’t handle the mentally ill guy, or is it self-stigma informing my conclusions?

I have a box of Christmas decorations that has sat unopened for over ten years. I have another box filled with holiday CDs and some two dozen videos. I’ll load up my iPod with hours of joyful, nostalgic music and listen while I exercise and take my daily walks. Every evening, and on the more inclement afternoons, I’ll watch a holiday movie and get lost in the story. What I can’t do is make a connection between what I knew and what’s happening now.

It’s like object permanence in reverse — my disorder short circuits at the memory bank and the deficit costs me the fullness of the experience.

I can’t keep a thing in mind for very long. When an experience is over, I can barely remember it, if at all. Medicine and therapy don’t change this. It’s a function of my schizophrenia, right in there with cognitive impairment and attention deficit, symptoms that sometimes get overlooked by the professionals.

Medicated, I may be more objective, but this phenomenon remains unaffected by the introduction of chemicals. In a Zen sort of way, I have a blank, open mind, but whatever follows rarely sticks. It’s not charming, it’s frustrating—for me and people who know me. The emotional context is what really gets me; I have no continuum to count on. I’m simultaneously dead in the water and all at sea.

I focus on managing my illness. I work with my therapist, my case manager, and my psychiatrist. I try to eat right, exercise, and keep in touch with the few friends I have. We go out together and, after I get dropped off at my apartment, it’s as if we’d never seen one another. I’m suddenly back in my room with only vague impressions of the camaraderie, images which fade out quickly. I can’t stress it enough: this is the loneliness that can accompany a mental illness, and in my specific case, this is the mechanism by which I find myself locked behind the gate.

On the upside, things are almost always new. On the downside, one thing does not lead to another. So I survive on ritual, and sometimes changes to my patterned life can cause a disruption.

I get chided for being reluctant to change when that couldn’t be further from the truth. I appreciate and welcome change, I just need to blend it into my patterns. Spontaneity comes naturally to me, and I appreciate it as a value in others. It’s exciting and human, but it can also create a state of stasis should one focus solely on the impulsive. To maintain my mental health, I need consistency and reliability of people, places, and things. Without such, chaos might ensue, and I know where chaos takes me: to restraints, plastic bed covers, and heavy medications.

As I explore the functionality of loneliness in my life, I also look to accountability. Do I try to put myself out there, and do I do so without expectation of return? Yes, and yes. So why do I feel alone? Is it because others can’t handle the mentally ill guy, or is it self-stigma informing my conclusions? Is it this memory module that I have awareness of but no relief from? I wonder if it’s a possible combination of all of these components. I wonder if there’s an answer at all.

I don’t just “feel” alone…I am alone. This is a daily experience. I work on it with my therapist, but the organic piece isn’t something that can be altered with psychotherapy, nor with the medications my psychiatrist prescribes. I am not frivolously exploring this territory. I am trying to understand something about myself in order to better myself.

The loneliness took me to attempt suicide a year ago. My journal chronicles my four month path to that conclusion. I began planning before Halloween and continued through the holidays. I truly believed the spaces in between my moments of contact and nothingness, where memory served me not. I listened to the voices that psychosis brought. I gave up. All these months later I still ponder the question of loneliness. It’s a puzzle, and it’s one that I intend to solve, but solve in a proactive way rather than succumb to the darker thoughts and feelings which directed my actions a year ago.

If the holidays or the long winter months bring depression with them, remember: it’s a better thing to reach out for help than it is to suffer in silence. If things get bad, call the Crisis Line (or the Warm Line if you have one in your area). Someone will be there to help you. That’s something worth remembering.

If you or someone you know needs immediate help, please call the National Suicide Prevention Lifeline — 800.273.8255 (TALK) — a free, 24-hour hotline available to anyone in suicidal crisis or emotional distress. All calls will be routed to the nearest crisis center to you. 

Additionally, the Crisis Text Line is available 24/7 to help you with any kind of crisis. Text START to 741741, or visit www.crisistextline.org/faq to learn more about how the Crisis Text Line works. 

 

 

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Dynamic Depression by Kate Mansi

For example, while I was feeling extreme joy for my family’s experience that day and words like depression could not have been further from my mind, it did not change the fact that it was still a part of me. Sometimes it’s present, sometimes it’s dormant, but it’s always there and I am learning to take ownership over it equal to all the other parts of me.

November 20th I was lucky enough to watch through a window into the delivery room, as my sister became a mother to two tiny twin boys. What I witnessed will forever be one of the most powerful moments of my life. Without even looking into their eyes, holding them or even smelling them yet, it felt like they shattered my heart into a million tiny pieces in the best possible way. I didn’t know I could love that BIG! The world felt like it froze perfectly still and I had this slice of pure joy. I was stunned in awe of life and of my sister, and of all mothers. Just days before Thanksgiving, my family was given the greatest gift of all.

The next morning (and every morning since), the first thought to flutter through my mind upon waking has been, “The boys – it’s real! I’m an Aunt!!” I couldn’t shake this sheer awe and excitement. I felt an unexpected sense of purpose and strong surge of empowerment to take the best care of myself possible for the sake of my nephews and my sister’s new family.

In between visits to the NICU, I snuck in a yoga class. Fitness, specifically yoga, is a big player in my practice of good mental hygiene. In life altering moments, I’ve had yoga classes I’ll never forget. This was one of them.

Tears streamed down my cheeks and onto my sweat stained mat as I moved through my practice that day. With my eyes closed, I moved through each pose and failed several attempts to keep myself from smiling ear to ear. It was the first time I was alone to really pause and sit with the emotions that came with the arrival of our new family additions.

As we settled into savasana I closed my eyes and again felt tears stream down my face. I knew I was crying for all the good things in my life at that moment. I can’t remember the last time I felt that happy, that whole, that complete and peaceful. I wanted it to last forever.

A few minutes in, the instructor offered up a quote for us all to think about as Thanksgiving approached, “It is impossible to feel depressed when you feel true gratitude.” Immediately my gut reaction was resistance. I noticed the drastic switch of emotions swirl up inside me and then started judging myself before even questioning why I was so irritated.

“It’s a simple concept to encourage gratitude, can’t you just move on?” I thought. So I inhaled deeply, refocused on gratitude for my nephews and worked on getting back to my ‘happy place’. Boom, there it was again, right in the forefront of my mind like a giant stop sign I kept seeing and hearing her words: 

It is impossible to feel depressed when you feel true gratitude.” 

Next thing I knew we were directed to “bring life back into our fingertips and start waking up the body” – I missed it! I wasted my entire savasana contemplating what was wrong with me that I couldn’t just inhale and exhale the simple message of true gratitude, when ironically, I was feeling consumed with gratitude that day!

Feeling defeated, I rolled up my mat and drove straight back to the NICU to check if the spell of my sheer elation had been broken. I felt like Clara in ‘The Nutcracker’ not wanting the party to end. I was relieved it all came back to me the instant I was in their presence.

Seven days have passed since the yoga class, and I still can’t stop thinking (okay, fine, obsessing) about that damn quote. Finally I did something I should have done about seven days ago. I gave myself permission to challenge my thoughts. Permission to take inventory of my inner resistance instead of pushing it away (God knows that’s an ever present lesson).

Here’s what I’ve come up with:

Undoubtedly, I believe the instructor was well intentioned in offering that quote to her class. An inspirational gesture to encourage her students to embrace gratitude. In my opinion, I have to honor that I found it to be inaccurate, insensitive and a prime example of the stigma surrounding mental disorders. While I see her point in the great impact gratitude practices can create, it cannot completely absolve depression for someone who struggles with it. Her perspective was confusing, conflicting and isolating. Confusing because for me, someone who lives with anxiety and depression, that is not the world I live in. It is imperative to my mental health that I remember, nothing is impossible with depression, or anxiety.

This doesn’t mean we have to be white knuckling our happiness and preparing for disaster around any corner. Though the reality is, for those who struggle with depression, nothing is impossible. Expecting that you can pluck out your depression and ‘solve’ it, is a trigger-some set up for disappointment.

For example, while I was feeling extreme joy for my family’s experience that day and words like depression could not have been further from my mind, it did not change the fact that it was still a part of me. Sometimes it’s present, sometimes it’s dormant, but it’s always there and I am learning to take ownership over it equal to all the other parts of me.

I’ve lived the majority of my life with anxiety and depression. I’ve never embraced it, never spoken about it, never wanted it to be part of my story. Until recently. The truth is, depression and anxiety are a part of my story, and I want to make it one of the great parts! That goes along with all the other wonderful parts I have to be grateful for – including my new nephews. I want those boys to grow up in a world that is honest and truthful about mental health so that they never feel alone and will know how to comfort those who do. I want to create momentum to elicit change instead of staying silent and perpetuating stigma.

That’s why these last few months, I’ve hosted a series of workout classes to benefit BC2M in a campaign I’ve titled #SweatToStopStigma. With partners such as Open Sweat and The Know Collective, we’ve been raising awareness, support and donations one workout class at a time.

BC2M has a difficult task. They are not fighting for something tangible like delivering clean water to underprivileged countries, or building homes for people in need. You can’t necessarily measure the results of this fight. It is a change that has to occur from within and spread and spread and spread until we’ve changed the world.

The last week has given me so very much to be grateful for. It brings me to tears (again) just reflecting on this moment in my family’s life. It’s truly beyond me how blessed I am. And even in that great depth of gratitude, I acknowledge that my depression and anxiety are also a part of me. I won’t take that away from myself. I will learn to work with it instead of against it. I will be mindful that it can always reappear and coexist within other emotions, and that I’m not alone in that.

Just like my interpretation of Clara in ‘The Nutcracker’, it’s possible that we can dance with dark demons and also experience the purest sugar plum moments in the Land of Sweets.

If this post has resonated with you, please join in spreading awareness for #sweattostopstigma.

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Thanksgiving Eve

We can get through the next few months staying healthy. Please indulge in reading the BC2M website if you do feel alone. Post your feelings. It helps to reach out. I no longer isolate from depression. My symptoms are managed well. Writing to all of you helps me enormously so I say THANK YOU and we’ll get through this holiday season together, alive.

Okay, now I can breath – the turkey is in my fridge, thawing, and I have all the ingredients for pies. A list of Who Is Coming To Dinner is complete, cooking chores have been handed out. And who is going to clean up? Not sure.

I remember when I was a girl we were forced to take a family walk after Thanksgiving dinner… sheer horror considering that turkey has a soporific effect making us all tired after we stuff ourselves with it; this makes clean up a problem. And I won’t be hosting this gathering, just transporting food, I hope.

There are so many aspects to Thanksgiving. I love the family part but there are some people I don’t really socialize with, or particularly like, except on holidays. And the Native American aspect; they hosted our ancestors on the very first Thanksgiving but were later slaughtered, a very dark stain of treachery on this day; I have a hard time with that one. And knowing that so many of us won’t have a dinner to come to or even a family to take us in. This aspect cuts my heart.

Being mentally ill defines my holidays. I know that could sound a bit self-centered but it’s true. Or perhaps instead of being negative I could say that mental health defines my holidays. I received an invitation to a night of music at a local bar this morning that read: Music 8pm to 10pm, then the name of the bar, then drinks half-price at 7pm. Well, my son Calen was here when I got the invite and I told him, “My goodness, I thought about this for one second then realized that first of all I don’t drink anymore and secondly I take my meds at 8pm then finally I go to bed at 10pm.” But I did have a few seconds of regret, of feeling rebellious and wanting to not live with bipolar 1 disorder. Damn!!! But the moment passed, because it had to, and I realized I’d so much rather spend my evenings with my 4 dogs than be at a bar.

How does Thanksgiving fit into this scenario? Thanksgiving is the beginning of ‘the holiday season’, right? And what does that mean? For me that means making choices that don’t push my routine out of the picture. Sometimes I can push the envelope and stay healthy, other times I can’t. I have to be sensitive to what others are asking of me. I have to live with my particular envelope – mental illness. It gives me great comfort to know that I’m not alone. I don’t know if I could stick to my routine if I was alone with my mental illness; none of us are, even if we feel isolated at times. We can get through the next few months staying healthy. Please indulge in reading the BC2M website if you do feel alone. Post your feelings. It helps to reach out. I no longer isolate from depression. My symptoms are managed well. Writing to all of you helps me enormously so I say THANK YOU and we’ll get through this holiday season together, alive.

 

 

 

 

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Thankfulness Generated From Bipolar

Fourteen years ago when I was 24 years old, I was diagnosed with bipolar I, and it saved my life. Slowly, the pieces came together and the many years before that came into focus. There was a reason for all of the madness and the pain and confusion. And there was finally a reason to want to get better. Finding out I had bipolar was the first time I felt like I wasn’t crazy, if that makes any sense.

While it takes a holiday for me to tune in to what I am grateful for, I can say I am thankful for that or else I may never be able to focus my thoughts on the topic. Thankful. It’s funny I had to Google the word before diving in. As a research writer, that is the way I approach every article or topic. I find it easier to wrap my head around the facts as I can never quite fully trust my own instincts. I just figure my thoughts are always burdened by cynicism. At the same time, my mom will tell you I’m the most positive person she knows. And I know others that may say I’m full of negativity. I guess it’s all the way you look at it.

But I am definitely thankful. Having a mental disorder I find myself extremely thankful for physical things: access to healthy food and water, dependable shelter, and the ability to exercise. I am also thankful for being diagnosed with bipolar disorder. Fourteen years ago when I was 24 years old, I was diagnosed with bipolar I, and it saved my life. Slowly, the pieces came together and the many years before that came into focus. There was a reason for all of the madness and the pain and confusion. And there was finally a reason to want to get better. Finding out I had bipolar was the first time I felt like I wasn’t crazy, if that makes any sense.

I am thankful for the medical professionals I have advocating for me and connecting me with forward-thinking treatments. I am so deeply frustrated with the fact that not everyone has access to strong, competent, passionate doctors. I’ve had many undeniably damaging interactions with doctors myself over the years. And I am thankful that I now can trust my doctor’s professional opinions. I know they are truly looking to not only ease the burdens of the disease, but find a cure for it in some ways.

And in no particular order, I am thankful for my family. My parents, who may have thought they failed for a couple of decades. What they didn’t know, nor did I, is that all of the good values and beliefs I have today are from the way the raised me. There’s not much they could have done better to give me the building blocks I would need to grow up a strong, confident person. The only thing is that none of us knew that would take almost 30 years to happen. But they hung in there, as did I, through the mass confusion and pain bipolar has caused in my life.

Here I am today though. Thankful for my wife, the most patient person I’ve ever met. While some days I’m not sure how I survive, most days I’m completely baffled as to how she survives with me. And in many ways, our daughter has saved me. She has opened up my heart and mind in ways I could never have imagined, and can hardly express. But from one bipolar person to another, you can understand that even your child can not cure you or snap you out of it. But, even on the worst of days, while I cannot pull myself out of the irrationality of the disease, I can still ache with love inside at her sight. She brings me back, even only for a minute, to the simplicity of life. I am thankful that she does not know the afflictions I carry. Rather she is absolutely authentic in everything she is.

While I cannot say I wouldn’t rather not be bipolar if given the chance, I can say that being bipolar has given me insights on my life that I may not have had if it wasn’t for the disease itself. I guess you can relate that to the fact that suffering often makes us stronger. And I am thankful that I am finally strong enough to use my voice. I have always loved helping others find their voice through writing with them. But I am grateful that I can now use my voice, and trust my thoughts, enough to share my journey to educate others about this disease and encourage those with it to fight. I am thankful I finally realized that there is a way to help myself and I want that for everyone.

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A Day In The Life

Sometimes that’s what it’s all about, this life where I work hard to overcome my mental health challenges and blend into the fabric of life. This is where I need to remember that I can advocate for myself as well as others, that we all can, and that the future of how we’re perceived rests solely on our will to be understood and accepted on equal ground.

passenger“Someone forgot to take their meds!” the man shouted to the riders on the bus. “Happens every time!” he laughed.

I felt a sickening jolt in the pit of my stomach and wondered briefly, “Is it me?” but it couldn’t have been. I have a note stuck to the fridge which I put in my empty cereal bowl the night before, like I do most every evening, to remind myself to take my medicine. One of the most common downsides of living with schizophrenia is having to deal with working-memory loss, those immediate short-term memories that help us navigate the day. I still have little-to-no retention, even medicated, hence the drawer full of Sharpies and three-by-five notes pads. It pays to be prepared. I had nothing to worry about, but the boisterous comedian concerned me for a moment.

The passenger he was referring to was a non-English speaking individual riding the bus with her dog for what appeared to be the first time. She didn’t seem to understand the instructions regarding fare payment, or the rule of not allowing pets to ride on the seats. And for this, the comic cracked wise. I felt compassion for the woman. It wasn’t that long ago that learning new bus routes was an ordeal for me, too.

I was on my way downtown for an appointment at the state courthouse. This was a big deal, turning in my paperwork early for a case. That I managed to fill out all of the forms correctly made me feel like a real person and not the schizophrenic that I am sometimes ashamed to be. I say ashamed because I want my mental faculties to operate at maximum efficiency and not at a slower pace than another, non-mentally ill person. I want to be able to focus, to compartmentalize. My medications help with that, but it’s a process that I constantly need to review and renew. I’m never entirely out of the woods. Where I used to freely associate I now slog along like a tortoise, so I let self-stigma influence my self-image. I’m not proud of that, it’s just true. Accomplishing something challenging makes all the difference in the world. I walked into the courthouse with a little pride in my step. I’d managed to do something others take for granted. That felt good. However, the feeling didn’t last.

The security guard at the gate treated me like an outcast. Maybe it was my clothing or my stride, but, for whatever reason, he regarded me with a certain amount of disdain that he hadn’t shown to the other people entering the building. I kept my composure and followed the rules. Belt off, wallet and phone out, keys in the tray, coat on the conveyor belt. Standard operating procedure. When he invaded my personal space in an attempt to move me along, I tried to neutralize the tension by asking him a question. I showed him my stainless steal medical ID bracelet and asked why it didn’t set off the alarm. When he read the word “schizophrenia” printed across the band, he abruptly backed away from me. The name of my illness caused a disturbance. It was an uncomfortable moment.

I stepped out of the queue to put myself back together, and headed for the elevator. The staff in the office I was visiting were pleasant, reaffirming my belief that people are basically good. On my way out of the building I smiled to the security guard and said that I’d see him next week. He nodded but didn’t smile. The other officers did. Perhaps he was having a bad day. Maybe he didn’t like my looks. Or it could’ve been that the word “schizophrenia” startled him. It didn’t need to affect me either way. Still, I found it troubling that I’d had to encounter two types of stigma in one morning, from the man on the bus and the guard at the door. Two instances where I questioned my self worth because of someone else’s agenda.

The comedian was clearly making fun of the new rider, but nobody laughed at his jokes. He was the only person who thought he was funny. Of all the things he could have said, why did it have to be a slight towards mentally ill people and their necessary regimen of self care? His air of superiority showed the kind of person that he was—condescending and assuming. The security guard’s recoil when he read my bracelet gave me pause to wonder—was he taken aback and feeling wrong for riding me, or did it fortify his position that I was an undesirable person? I’ll never know. It just made me think.

Sometimes that’s what it’s all about, this life where I work hard to overcome my mental health challenges and blend into the fabric of life. This is where I need to remember that I can advocate for myself as well as others, that we all can, and that the future of how we’re perceived rests solely on our will to be understood and accepted on equal ground.

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The World Series Championship of Silver Linings

I’ve often talked about the sliver linings that have come with our family’s journey with mental illness. This to me, is the grand slam home run of silver linings.

In my last blog, I wrote about my youngest daughter’s transition to college and my need to let go. Last week I received a text from Leah (she’s given me permission to use her real name) telling me how well she did in her midterm conferences. “I’m doing a good job in college, mom”. I can’t think of any more beautiful words to read. Leah also told me that she had received glowing feedback on one of her midterm essays. I am honored not only that she was willing to share it with me, but that she gave me permission to share it with our Bring Change 2 Mind family. I’ve often talked about the sliver linings that have come with our family’s journey with mental illness. This to me, is the grand slam home run of silver linings.

In Leah Schiman’s own words

I think that I’ve carried the whole world. I feel like conflict and I know each other on a personal level. I’m not trying to say that I know what it’s like to live in extreme poverty or that I understand the horrors of the battlefield, but I have undergone a war and carried every ounce of the struggle.

At sixteen, life brought change. My older sister had just moved away to college leaving me as the last child in the house. I was starting my junior year at a new high school and my parents and I were to move a few towns over. Although I was excited for a new start, I felt an enormous amount of guilt, a giant pit in my gut. We were selling our childhood home because I wasn’t doing well at my current high school. I watched my sister’s eyes round out with sadness as we drove away from everything she’d ever known, a house she’d never return to for holidays and summers. I carried that guilt with me like a brick in a backpack that I could never take off.

School started and I hated my new school as much as my last. I was the new kid falling into a community that wasn’t looking for change. I was alone, so I packed my brick of solitude right next to guilt, zipped up my bag and continued on.

Things went on as they had and little by little I acquired more weight than I could carry. My parents failing marriage, my declining mental health, my inability to attend school, the sale of our house falling through, all bricks piled into my backpack. It wasn’t so long until I found myself underneath the weight, no longer able to hold it up.

On January 30th, 2014, I found myself in a familiar position. This would be my eighth time in a psychiatric treatment center, and second time long term. My backpack was stacked to the top, strapped on tight and I had absolutely nowhere to run. I was left with a choice. I could either continue to get crushed under the constant weight, or I could accept the help around me and unload those bricks one at a time.

At sixteen years old, I had already experienced a life of complexity. I carried around more bricks than I had known existed. Becoming aware of them was half the battle, accepting them another, and moving on from them was an entirely different beast. I had been so used to all of these burdens that I had no idea who I was without them. So, I added another brick and called it ‘identity crisis’ and I carried it around everywhere I went. I made jokes about it, introduced it to my friends, and I cried over it. I was more lost than I’d ever been, so I clung to what I knew. I clung to my bricks.

As twisted as it may seem, my struggles brought me comfort. I knew them well and they knew me. For the most part, I could predict what would provoke the anxiety attacks and the obsessive thoughts of my eating disorder, and that made me feel safe. I knew that my anxiety spiked at meal times, so I could prepare for that. I knew that when my body felt tired and heavy I could expect a depressive episode. I didn’t just know what would happen, I was used to it. I despised how I was existing but I didn’t believe there was another way to live. So, I dug my heels in, and once again, I loaded up my backpack, strapped it on tight and refused to let go.

I can still taste the bitterness of the intense denial I had towards my eating disorder. I beat myself senseless trying to convince myself that there wasn’t an enormous problem with the way I was living. I assigned myself things that were “safe” to eat and stayed far away from things that were not. I stopped wearing my favorite clothes because I couldn’t stand to look at myself. I was afraid of food and I was afraid of myself.

I suffered from all the classic symptoms: fatigue, thinning hair, weakness, low energy and I wouldn’t let myself receive help. I refused to have another brick in my backpack, another illness to label me. Acknowledging another issue meant fighting another war and I wasn’t willing to do that. I just wanted to be done.

I can’t describe the opposing need to change yourself absolutely and stay exactly the same, but it has a force like a magnet and it pulls at you until you think that you’ll split in half. It’s an impossible longing but it is so incredibly attractive. The promise of fantastic change without having to alter a thing dangled itself in front of me every day, and oh, how I drank up that lie and let it course through my veins. I so desperately wanted an easy fix, but that was so far from what was in front of me.

It’s like your hands are covered in superglue. You grab onto an enormous rock and grip it as tightly as you can. Now imagine you’ve been holding on for hours with that immensely tight grip. Your fingers are cramping, your arm aches, and you just want to put that rock down. You relax your hand to release the rock, but your hand and the rock are so attached that they have almost become one. Sure, with a lot of work, you could probably pry your hand from the rock but it would be incredibly painful and you’re too tired and weak to do it yourself. All you want to do is let go of this damn rock. But you can’t. You don’t know how. And it hurts like hell. So, you hold on, and you hurt until it’s all that you know.

There is no “just let go”. “Just stop thinking about it” doesn’t change the fact that it’s there. It is not simple. It is not easy. But it’s not impossible. You can unload your bricks, one at a time – half at a time if you need to. You can take your time, you can disagree, you can scream and you can get mad. You’re entitled to that. And I was entitled to that. So I let myself be mad. I allowed myself to feel cheated and robbed. I allowed myself to feel. Without criticism, I gave myself permission to be a mess. With permission to feel, came permission to forgive, and permission to love.

I laid down my sword and I put down my fists. I held my own hand and I gave it to others to do the same. I sat down in a comfortable place and unzipped my backpack. I looked at what I was carrying and closed it back up. I set the world and its bricks aside and I walked away.   

 silver-linings

 

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Lucky to be Alive

Change is often an agonizingly slow process, but from this side I can say it truly is worth it. While I continued to struggle with self-harm for three more years eventually I developed a support system that helped me to achieve my goal of sobriety—11 years now. To this day I live with reoccurring episodes of depression, but even that has changed. I am quicker to recognize the downward spiral, quicker to seek the help I need. I have learned to say on the good days and on the bad, “I am lucky to be alive. “

treeThe day I attempted suicide I didn’t want to die. That is to say I most definitely did not want to put my family through the pain of my suicide. That was reason enough to keep going because I loved them deeply, and I didn’t want to break my mother’s heart.

The problem was I didn’t want to live either. I didn’t want to keep getting up day after day and facing what my life had become.

Weeks before I had lost my job because my employers rationalized, “our insurance won’t let us employ a person who cuts herself as a childcare provider.” They said they knew I wasn’t a risk to the children. They knew I was a dedicated, loving caregiver. The parents of the children I watched sang my praises, but the insurance wanted me gone.

The insurance said I was a liability, claiming that at any moment without warning my private acts of self-aggression could metastasize to violence towards the children in my care. I knew the stigmatizing generalizations that their insurance company had made were unfair, but I felt powerless to advocate for myself.

“This is only temporary,” my employers said, “We know you are great at this job. When you have gotten treatment, when you stop hurting yourself, we want you to come back. We will give back your job.”

“Okay,” I told them, “I will,” because I wanted them to feel better about firing me, but deep down inside I knew I wouldn’t be coming back. They thought that mental illness was something that could resolve quickly. From the tone they took during our conversation I got the impression that they believed that telling me I couldn’t work for them until I stopped cutting would help motivate me to stop.

If it were that easy to stop cutting myself I would have stopped a long time ago. I was sixteen and had been living with my depression and struggling with the compulsion to punish myself since middle school. I had tried over and over again to stop, but I always failed. I didn’t believe things could change for me.

In the weeks that followed it became more and more evident to me that I would never be able to stop cutting myself. I began to dwell on what my life I imagined my future would be like if I never stopped, if the depression never left. Thoughts of suicide followed— unwelcomed and unwanted.

Then one morning I woke up at peace with suicide. What had been hitherto unthinkable seemed like the answer. Suicide was the only way I could see to end the struggle between the part of me that wanted to live a life where I wasn’t caught in a cycle of shame and self-destruction and the part of me that just wanted to stop hurting inside. I prayed for forgiveness from God and for healing for the people I loved. Finally, surrendering to the part of me that longed for death, I overdosed.

When I woke up hours later I was filled with remorse. I knew if I had died I would have destroyed my family, and I didn’t trust myself not to attempt suicide again. Ambivalence was a war raging in my mind—I felt strongly both the desire to live and the desire to die. This duplicity of desire led me to seek hospitalization as a refuge, a safe place to be so tragically split.

At the emergency room the nurse asked me how many pills I had taken. I laughed in his face and the part of me that wanted death said, “obviously not enough,” but the part of me that wanted to live was trying to form the words to say “too many. I’m sorry. You have to help me.” I just could not. My voice was choked out by the anger I felt over still being alive.

Later the ER nurse told me, “you are lucky to be alive.”

I whispered under my breath “I wish I was dead,” but there was a part of me that did agree with him; a part of me that knew failing at suicide was not failure, but a second chance. After the dark night of my soul, my heart was still beating. Breath stilled filled my lungs. I was still alive for a reason.

During the course of my hospitalization I came to realize that my thinking was making my life unsustainable. If I kept on saying to myself, “You are hopeless, going to be this way forever— Nothing good will ever come from your life now,” it was only a matter of time until hopelessness hijacked my will again, pushing me once more to the brink of life and death.

If I wanted to live, I had to choose to believe:

that things could change,

that there was hope that I could get better,

that despite the stigma I had experienced I was not irreparably flawed,

that there was purpose in my life waiting to be discovered.

At that time choosing to change my beliefs felt false. Emotion had dictated my beliefs my whole life. To say “I believe there is hope for my life,” went contrary to the depression and hopelessness I felt. It felt so fake, and it was important to me to verbalize that too. I would look myself in the mirror and say, “I feel depressed today, but I am choosing to believe that my life can get better. Not every day is going to feel this way. I am lucky to be alive.”

Change is often an agonizingly slow process, but from this side I can say it truly is worth it. While I continued to struggle with self-harm for three more years eventually I developed a support system that helped me to achieve my goal of sobriety—11 years now.

To this day I live with reoccurring episodes of depression, but even that has changed. I am quicker to recognize the downward spiral, quicker to seek the help I need. I have learned to say on the good days and on the bad, “I am lucky to be alive. “

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Hear No Evil

Is there any other symptom of mental illness more commonly ridiculed than the hearing of voices? I can’t think of an equivalent in the medical world that garners the laughter and demeaning cruelty of auditory hallucinations. Do we universally laugh at a concussion? Does hilarity ensue at the mention of cancer? Absurd to consider, yet we don’t think twice about giggling at a person beleaguered by voices.

ears-coveredI listened intently as the man told his story of homelessness and his struggles with mental illness. I had suspected that his indulgence in alcohol and drugs had taken him to some pretty dark places, but I hadn’t heard his whole story. As he wrapped it up he said, “I no longer hear voices…and I don’t talk back to them either.” The room broke into peals of laughter, as if what he was saying was meant to be funny when clearly his intent was the opposite. Was the group just expressing relief at the end of a harrowing story, or was this stigma at play? Judging from their response, I’d have to go with the latter, and that made my heart sink. I had to speak up. How do we still consider the torment of mental illness to be a source of humor?

When a normal person says something like “A little voice in my head said, ‘Go to the grocery’,” that “voice” is their own internal dialogue. It is not a product of psychosis.

A “little voice” tells you which toy to pick out for your niece or nephew; another tells you to check your watch to make sure that you don’t miss the bus. These are your thoughts. They aren’t actually manifested as concrete voices—it’s a manner of speech as you relate your story. You’re demonstrating that you were absentmindedly going about your day when you suddenly realized that you had something important to do, something that you didn’t want to forget. But you’re not hearing voices.

I have schizophrenia. When I’ve heard voices come from outside my head as if someone were speaking directly to me—only there’s no one there— that’s the kind of voice one hears in an auditory hallucination. There’s nothing funny about that kind of voice. It’s a jarring experience, one that never feels commonplace. These are voices that belittle, voices that badger, taunt, and demand. I have no control over them organically; anti-psychotic medication has helped to suppress them. And yes, I have often talked back to them, as I would any other voice coming from a person standing next to me. But is that something worth laughing at?

Why is this symptomatic earmark considered a thing of comedy when it is clearly disturbing and sometimes harmful to the person enduring it? Is there any other symptom of mental illness more commonly ridiculed than the hearing of voices? I can’t think of an equivalent in the medical world that garners the laughter and demeaning cruelty of auditory hallucinations. Do we universally laugh at a concussion? Does hilarity ensue at the mention of cancer? Absurd to consider, yet we don’t think twice about giggling at a person beleaguered by voices.

The stereotype of the person talking to themselves is a common trope in theater, film, and literature. Why is that? Perhaps it’s meant to signify that one has lost touch with reality; the audience’s fear of losing control is so ingrained that they need to laugh to show their discomfort. Maybe the screenwriter inserts the scene into the movie to guarantee a few well-timed chuckles. Is this an irresponsible perpetuation of stigma, or merely pandering to a crowd already primed to mock? It’s a chicken-or-egg scenario, but should be considered a source of outrage either way.

Some might say that I’m being “too sensitive”. Maybe I’d do better just to let the laughter continue, passing it over as if nothing’s really happening, you know, call myself an advocate in word only. Not likely. If I have to fight back against the voices that have plagued me since I was a child, then I have every right to speak out against the stigma and discrimination inherent in the public’s use of ridicule of the mentally ill for entertainment purposes.

Am I taking umbrage a bit too far? I think not. I wouldn’t belittle a person for the color of their skin or their sexual preference, and I don’t stand idly by when someone else does. How is this any different? Hearing voices is no laughing matter. In fact, in some cases it’s dead serious. When command voices were telling me to kill myself, you can bet I wasn’t laughing, and neither were the hospital staff or my friends when I went inpatient for attempted suicide. Make no mistake, the unconscionable laughter can be as denigrating as outright prejudice.

Let’s work together to end this inexcusable behavior. There’s plenty of wonderful ways to generate laughter without having to make fun of a person caught in the talons of mental illness. There is no debate here. That laughter is a form of bullying. When it begins, open up a conversation. Share your story. Create the solution.

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Pretending the Bed is a Raft

Often, I treat the bed as if it were a life raft, and the floor an ocean, teaming with sharks. It is laughable how safe the world I create really is. My little life raft. I line up my meds, my remote control, my phone, my laptop and my coffee on the night side table. This way, I am only an arm’s reach away from my survival gear. This is not the way I always live, but it is my default-mode when depression is particularly strong.

bed-day-853x479A good bit of my life is lived online. After years of isolation, I find that much of my human contact doesn’t involve human contact at all. Social media offers me the opportunity to stay in touch with family and friends during the best parts of my day. In this way, I am able to offer, in small doses, the best parts of myself. It’s easiest to seem like you’re ok if you only give those around you a pinhole view into your world. I can’t imagine how I would even begin to describe my day to someone who doesn’t live with mental illness. Sometimes, I am lucky to make it from the bed to the couch, and then back to the bed. There have been times when I didn’t get out of bed for weeks. I didn’t shower. I didn’t brush my teeth or hair. I didn’t eat a single meal that wasn’t a cold plate of leftovers consumed while standing over the kitchen sink at midnight. Once, I sprayed Febreze on myself so my husband wouldn’t know I hadn’t changed pajamas in six days. This was ridiculous, of course. He knew. How could he not know?

Often, I treat the bed as if it were a life raft, and the floor an ocean, teaming with sharks. It is laughable how safe the world I create really is. My little life raft. I line up my meds, my remote control, my phone, my laptop and my coffee on the night side table. This way, I am only an arm’s reach away from my survival gear. This is not the way I always live, but it is my default-mode when depression is particularly strong.

Apparently, I am experiencing a minor crash after a manic episode. I anticipate that this will only be a “minor crash” because even after all these years, I am still a bit of an optimist. Today, I got out of bed, made coffee and started a load of laundry. This feels like the beginning of a successful day. Laundry may be the sum total of what I can accomplish today. Even if this is true, I’m fine with that. In my world, SOMETHING is always better than NOTHING.

All this brings me back to social media. Some days, I can’t answer the telephone and the thought of going online makes me want to poke myself in the eye with a chop stick. Other days, social media is my salvation. Those are the days when connections are important and I reach out to those I love. This is the up-side of social media – contact without having to change out of my pajamas. There is a down-side. Since I have become more vocal about my diagnosis, friends and family have begun to post inspirational quotes and images on my social media pages. They are well-meaning but they are often ridiculously wrong. I find that I am conflicted, in many cases, as to how to respond. Should I say thank you for the kind gesture or should I point out that the quotes make me feel awful? Here are three actual quotes sent to me by well-intentioned friends:

You can have excuses or you can have results

If it’s important to you, you’ll find a way. If not, you’ll find an excuse.

We either make ourselves miserable or we make ourselves strong. The amount of work is the same.

I wonder: Do I need to break down all the things wrong with these quotes? Can you see the blame/shame thing? If you’re not happy, you must not be trying hard enough. After all, in the time it takes to come up with an excuse, you could have simply pulled yourself up by your bootstraps and found your joy. These kinds of posts create a real lack of trust between me and the person who has posted it. These kinds of posts confirm for me that there is still so much stigma and misunderstanding about mental illness. I appreciate that everyone will not “get” it. I have made peace with that. Although I hope that my candor will inform some people, I know that it is not my job to change the entire world; only to effect change in MY world. Still, when I see these kinds of posts, I want to explain that although I can make healthy choices, I am not able to change my diagnosis. I live with bipolar disorder. I have good days and bad days. Sometimes talking with me is like interacting with a hummingbird. Some days, I am more like a sloth. I say all of these things so that I can say this: I will not let the expectations of others color my progress. In the end, we are all simply making our way through the world the very best way we know how. For those of you who love someone who is living with a mental illness, here is what you should say: There will be times when you are going to want to give up. Don’t! Trust me, that will be exactly what they need to hear. Don’t give up! Speaking from experience, sometimes simply expressing compassion and love is exactly enough.

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ECT and Me

So sure, it’s okay now that people are open now about being depressed, or bipolar or having any mental illness. As long as we don’t discuss the details that could make other people uncomfortable. Most companies are required to provide the necessary legal measures for people with mental illness. While friends and family hold your hand when you cry and understand you don’t want to see them for months at a time when you’ve locked yourself in your house. But nobody wants to hear the true details of the horrors behind the illness. And everybody with a mental illness has a book chock-full of these details from the depths of depression to the pure insanity of mania and everything in between.

On good days, I rarely think about what got me to where I am today. Like most people, I take it for granted that I am living and functioning, partaking in daily activities with the ability to work productively. I attempt to remain mindful of the pain when it is absent though, in order to appreciate the good times, which usually come in waves of minutes or hours, rather than days or years. But living with a disease, a mental illness, I usually feel that if only “normal” people felt the pain and fear and despair that I feel regularly, they wouldn’t take their lives for granted at all. And as much as I want to be normal, I feel lucky I have an authentic perspective on quality of life.

While I take pride in my journey, and enjoy sharing it with others, that excitement is often quickly deflated. Right when I begin talking about what I’ve been through with others, I also quickly begin to recognize the dismay on their faces and the uncomfortable position of their bodies as the true nature of the situation sinks in like a dead weight in water. Just when I think I am fighting the stigma of mental health by sharing my story, I realize I’ve just completely admitted to somebody, a stranger, acquaintance or even friend sometimes, that I am in fact legally insane.

I usually start to lose people around the time when I begin to talk about having gone through electroconvulsive therapy (ECT). It’s like that term triggers a switch for them to stop listening, and to completely discredit me as a human being. And I know that all they can see in their head are the images portrayed in movies of crazy people strapped to beds screaming and convulsing and coming out as zombies on the flip side. No matter what comes out of my mouth after that, the engrained stigma has been ignited.

So sure, it’s okay now that people are open now about being depressed, or bipolar or having any mental illness. As long as we don’t discuss the details that could make other people uncomfortable. Most companies are required to provide the necessary legal measures for people with mental illness. While friends and family hold your hand when you cry and understand you don’t want to see them for months at a time when you’ve locked yourself in your house. But nobody wants to hear the true details of the horrors behind the illness. And everybody with a mental illness has a book chock-full of these details from the depths of depression to the pure insanity of mania and everything in between.

So I thought, why not begin sharing stories with people that do understand, just as I have in the many rooms of recovering addicts and alcoholics. I believe that it takes strength in numbers to maintain and advance the fight against the stigma attached to mental illness. And while not everybody with bipolar disorder experiences ECT, most people with the disease can still relate to some part of it. Like having to stay in a mental hospital, or losing months of work time.

But what truly haunts me the most about having gone through ECT treatments is the horrific aftermath of the treatment that saved my life. Yes, I was barely functional at the time I had nine ECT sessions. And yes, sometime after that, I was notably more functional and have been since. And I went from being on six to seven rotating meds to only being on two medications since then. And the experience ignited me to take care of myself physically and mentally and change my career path to fit in with my health needs.

But it also generated the most absolutely horrifying time in my life that I cannot stop thinking about. I lost my short-term memory completely from ECT. I can remember a few minutes here and there during the first couple of days and from months afterward. Other than that, the time is gone with the medical impossibility of ever recalling any of the memories. I found that losing my memory was the most disturbing thing I had experienced in life, even with the decade or two of other excruciating life experiences.

And while I don’t remember how I felt losing my memory every couple of hours or not being able to watch my two-year old daughter alone because I would forget she was there, it is the feeling of not being able to recall my life for a few months of time. The fact that I had to resign from a job, which I don’t remember doing, that I loved more than any other job in my life because I couldn’t recall how to carry out the functions of the position. Or the unsettling confusion of waking up in an entirely new house in a new city day after day, not understanding that I “chose” to move away from a city that I loved. Side note: don’t make any big life decisions when you have the memory retention of a goldfish.

So here I am today, still struggling from the sometimes unspeakable characteristics of bipolar disorder. And I find myself forcing my appreciation for feeling better now than I did before ECT. But I think that is something relatable from a person with a mental illness to a person without that affliction. That no matter how hard I try to recall how things were worse in the past to put perspective on a currently bad situation or experience, it is hard to reach out of the moment to feel anything but the current, pressing, heavy burden. But when it does pass, hours, days, weeks, months or years later, what matters is I continue to try to be mindful during the good times, and sometimes that is the best I can do.

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On My Own

I have to remember to be kind to myself. Navigating the so-called real world takes more for some than it does for others; each case is as individual as the person experiencing it. No two are alike. If I can get through any one thing with some semblance of grace, then I deserve to pat myself on the back for have completed a job well done. And that includes a moment out for tears in the washroom.

alone-shoesI had asked the filing clerk for help, and she was very accommodating, given that I had explained to her that I was experiencing the morning through the lens of schizophrenia. So later, when I was alone in the restroom, why did I feel like crying? My head hurt from the complexities of the paperwork and the protocol, but it wasn’t something that I couldn’t handle. After all, I’d ridden the elevator twice, a big step considering my claustrophobia.

The old, familiar feelings of shame and self-stigma came flooding in. I knew what I was up against and it bothered me. I felt vulnerable and small. Having to go through the challenges of making sure that my paperwork was in order and that all the requirements were being met was wreaking havoc with my short term memory. I got out my notebook and wrote down my personal shorthand for everything the clerk said to me. This included instructions on walking two blocks outside the court house to get to the bank so that I could withdraw funds for my filing fees, another hurdle in the busy downtown streets. Two blocks. An eternity.

Anxiety was compounding the situation for me and I could feel myself reverting to the motherless son of my illness in short order. The signs were there, delusions were peeking through. Vehicular noise was assaulting and overwhelming. People lunching in the park outside the court house were all talking about me. Standing in front of the ATM I froze, believing that I didn’t know how to use it. The noise wouldn’t stop until I was back in the court house, sitting safely in my chair, awaiting acknowledgement from the clerk, who reacted as if nothing had happened in the few moments that I was gone. I went to the restroom to wash my face.

I had completed my paperwork to the satisfaction of the attorneys save for explaining that I lived with schizophrenia, as per one line in the paperwork with regards to mental health. And with that one line I felt like the whole house of cards I had so carefully crafted as self confidence seemed to crumble. The clerk was supportive and walked me through the legal morass with efficiency, all the while making sure that, according to my request, there was room to pause and question the proceedings should my memory fog over and I find myself lost.

I felt the beginnings of an anxiety attack coming on again when she said she’d be going to lunch. I’d lose my tether to the To Do world. I’d be on my own with a different clerk. Would he be as gentle a soul, as understanding, as accommodating as she? I had no idea. I excused myself to go sit alone in the empty waiting area. I texted my friend Jeff about pancakes, two components of my stability: my best friend and my favorite food. Thankfully he responded right away. I needed the familiarity.

With time, I calmed down and reminded myself that I had new chemistry at play, that my anti-anxiety meds were available to me as my PRN, and that eventually everything would slow back down to manageable. In my pre- medicated days the trip would have required a friend or two just to get me into the elevators, let alone through the paperwork maze. The ATM adventure would have escalated to the stuff of nightmares, and the coping mechanisms that I’d have had to draw upon would have been unwieldy. So I could give myself props for having gone through the entire experience on my own, alone, like a normal person.

This is what it’s like for me to live with a mental illness. I have well- meaning people telling me that I’m fine when that’s their uninformed opinion. They tell me that events like my court house experience are simple processes to go through, yet I find them extremely challenging to complete for all the symptomatic reasons that I’ve lived with for so long. I try. A lot. And often things work out. But it’s the process of getting from Point A to Point B that brings up issues of fear and anxiety, self-worth and facility, that I all too often find myself wondering: am I ever going to be better at life?

I have to remember to be kind to myself. Navigating the so-called real world takes more for some than it does for others; each case is as individual as the person experiencing it. No two are alike. If I can get through any one thing with some semblance of grace, then I deserve to pat myself on the back for having completed a job well done. And that includes a moment out for tears in the washroom.

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The Power of Hope

Hope is a big part of raising the curtain on mental health. Without it we are nowhere. I can only hope that prejudice and shame will be eradicated someday. I hope…

hope-darrentunnicliff-flickr-4232232092-ccbyndnc2Hope is a prayer like ‘we hope he comes through his operation’. Hope is what we don’t have when we’re in the middle of an untreated mental illness. Hope is not there during a psychotic break, a deep depression, a higher than high manic episode. I have hope, now; I hope my illness will stay at arms length, that I won’t ever fall into a depression or kick up into a mania again.

My son, Calen Pick, who lives with schizophrenia, is eloquent on the subject of hope. He says that for him, hope represents “The rejuvenation of my perception.” I really like that! A positive perception of myself and you of yourself is probably one of the most important pieces in recovery.

Sometimes I get so tired of managing my medications, of calculating when I should go to bed, of never being able to go to a late movie or have time to sit up late with a good book. I get exceedingly tired after taking my medication and simply can’t function. But, if this is all I dislike about my meds then I’m so very lucky!! Well, I’m not so fond of dealing with refills, etc., right? My heart skips a beat when the refills on the bottle say zero! Have you noticed that I’m only tired of dealing with the medications, not the symptoms of my illness?

Hope is so very important, especially for those of us who have struggled mightily to get well. I used to be terrified of what I’d do when manic but even more terrified of depression because of the risk of suicide. I had two medications turn on me, one almost killed me, yet I persevered. I HOPED that eventually all would be well with new meds. I HOPED that I would be able to function. I HOPED to live a life full of light and action and work.

When I was suicidal I craved nothing but death. I don’t think hope was even possible in that state but a tiny voice did tell me that I needed to stay alive for others, not myself. I do think that tiny voice was hope and that voice kept me alive.

I’m invited to speak at various mental health organizations’ fundraisers. Every time I get up on the stage I look out at all the faces, faces that are filled with hope. Last year I remember looking around the room and tearing up because all these guests were there HOPING that mental illness will be treated with dignity, not shame, with love and compassion, not hate.

Hope is a big part of raising the curtain on mental health. Without it we are nowhere. I can only hope that prejudice and shame will be eradicated someday. I hope…

 

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Every Reason to Hope

Our culture is changing in regards to its view of mental illness, but we have a long way to go. There will be people who don’t understand. People who say the wrong thing whether out of spite or malice. If you let fear of what they will say dictate your life, then in a way stigma wins. I will teach my daughter that it is the people who love you that matter. The people who are there for you when you feel empty and tired are the ones who have earned the right to speak to your heart.

I watched as the nurse examined my arms to find the best spot to insert the IV, but I didn’t look up. I didn’t want to see the look in her eye when she noticed the scars. I didn’t want to see the flicker of recognition cross her face disclosing that she knew things about my history that I would rather hide.

Would her eyes have shown contempt? Or maybe empathy? I will never know. I wasn’t brave.

I was afraid.

Sitting there in active labor I was afraid of the nurse judging me as unstable, unfit, not worthy of being trusted with a child. As many times as I tried to suppress the self- doubt, reminding myself that not everyone is as judgmental as my loudest critics, the question “What if she thinks I am not a good mother?” continued to creep back into my consciousness.

As much as I worried about being stigmatized as a bad mother because I live with depression and anxiety, that was not my greatest fear that afternoon. Ever since I found out I was expecting a daughter I was scared of her inheriting the weaker points of my genetics. Because my experience with mental illness as a teenager had been so difficult, I was afraid to raise a daughter who might grow up to think, process, and emote like me.

In the weeks leading up to this moment of her arrival I had dreamed about who my daughter would be. Imagining all the genetic pieces that would come together to make a one-of-a-kind girl. Imagining who that girl would be in the world. These reflections came rushing into my mind as I anticipated her delivery:

“I wanted to pass on to my daughter my passion and compassion,

my faith and my creativity,

but not my depression,

not my anxiety,

not my deep fear of rejection

or my self-protective isolation.”

The thoughts were loud, making the voice of the nurse seem distant. As I recognized anxiety growing in me, I made a conscience effort to redirect my thinking.

Deep breathing. Letting go of the fear of what I could not control. Focusing on the moment. Focusing on the joy. I reminded myself:

There is every reason to hope.

If depression is a part of her story, my daughter will live in a world of better medicine.

Compared with the breadth of medicine, effective medications for mental illnesses have been available for a very short amount of time. While neurobiologic research is still in its infancy, a growing amount of resources are being directed to its furtherance. Everyday researchers are learning more about how to intervene in mental illnesses with medications that correct neurotransmitter imbalances specific to the genes that contribute to the illness. The more we learn, the more targeted therapy is, the better we can address the chemical imbalances and brain abnormalities that play a role in mental illness.

There is every reason to hope.

If mental illness is something she ends up experiencing, she will live in a more accepting world

I believe that as people living with mental illness share our stories we open the door to a culture of acceptance. We are taking power away from shame. We are refusing to live isolated from the community. That is why despite the risk of being stigmatized or misunderstood I will continue to share my story so that the truthful conversation can begin. Mental illness is not about attention-seeking, or weakness, or moral failure. It has a biologic cause that can be treated.

There is every reason to hope.

If she ever feels stigmatized, I can surround my daughter with people who will love her and teach her to listen to them.

It is a hard choice, a brave choice, to choose to listen to the people who love you rather than the people who attack you. Our culture is changing in regards to its view of mental illness, but we have a long way to go. There will be people who don’t understand. People who say the wrong thing whether out of spite or malice. If you let fear of what they will say dictate your life, then in a way stigma wins. I will teach my daughter that it is the people who love you that matter. The people who are there for you when you feel empty and tired are the ones who have earned the right to speak to your heart.

And I will be one of those voices for my daughter, whispering to her heart, “Keep on hoping baby girl. Whatever life holds for you. There is every reason to hope.”

 

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Part IV: Transitioning Into My Professional World

These are tricky illnesses and, yet, I fully believe that the more that we embrace a delivery of care that is rooted in dignity and respect, and promote the values of non-shaming and anti-stigmatizing experiences, the more adults will be more likely to reach their own personal acceptance sooner rather than later.

So, I’ve shared my personal story and insight into the life path that I’ve taken. My family issues and experiences with mental illness began at an early age and definitively led me, initially, into various psychotherapists offices. Later, as my desire to gain some type of understanding of psychiatric illnesses and treatment was replaced by a deeper wish to help people with these conditions, I entered the Masters of Social Work program at San Diego State University. My emphasis was in Clinical Mental Health. I found lots of personal healing in gaining, at first, a beginning amount of information and increased empathy for the level of internal struggles that those with these illnesses endure. Later, my formal education grew and, equally as impactful, so did my experiences working with adults of both genders who were struggling with various psychiatric illnesses.

I’d like to segue at this point into various thoughts that I have experienced, observed, and / or taught others while employed at Napa State Hospital. Each year, through my work with a great team of professionals and numerous trainings brought into the facility, my skill level became more effective and I felt that I continued to make a greater impact on those I was treating and caring for. Being real and expressing genuine empathy and respect went a long way in building true clinical trusting relationships!! The ability to work with these adults provided me with a deeper, more meaningful awareness from minor personal nuances to explicit symptoms that have been experienced. This took a great deal of vulnerability as people bared their souls in hopes of gaining the capacity to manage their symptoms more effectively than they had previously.

I also had the privilege of working with the loved ones and significant others of my patients in ways that my family could only dream about when my brother was in psychiatric hospitals. This is true especially with regards to psycho-education and an increased awareness of how their loved one was progressing in treatment and overall, as long as valid signed releases of information were in place. I remember that it was always so painful for loved ones when the patient was unwilling or unable to consent for this open communication. One wishes to be able to provide information to all their loved ones feeling understandably anxious, but are legally bound not to do so. Thankfully, this was more rare than common as the trust level was high, and most of our adults wanted the staff to inform their loved ones of how well they were doing and to help them better understand their illnesses, the forensic psychiatric system, rules of the hospital, and other questions.

This leads me to what I believe is one of the biggest issues and quite the long-standing dilemma within the field of psychiatric treatment and care. How does a mental health professional convince another adult that they are having trouble managing a mental illness (diagnosis) that they don’t believe exists let alone realize is actually happening to them and distorting their understanding of reality? This is especially true, I believe, with two significant symptoms regardless of the diagnosis – delusional thinking and mania. In both situations, a person tends to embrace the intensity of the feelings they experience and the “bigger than life” identity that often emerges in the midst of an elevated and grandiose sense of oneself. These adults report a heightened state of energy, a looseness of cognitive associations, and a grandeur within their thought process. In fact, it seems to me, that it also serves as a coping skill and therefore a defense against negative feelings of low self-esteem, insecurities, and a state of diminished assertiveness socially. I firmly believe that each person who is learning that they have a mental illness reacts differently although, overall, generally not much different than being told one has cancer. There is going to be a period of shock and denial similar to learning about any other serious health condition. Some stay in this state of denial, unfortunately, for a very long time, which can cause further complications. A model of grief and loss, established by Elizabeth Kubler-Ross and accepted internationally, explains that each person goes through five stages of grief / loss leading to a state of acceptance. The first stage is Denial, and then Anger as one begins to move beyond the shock and is overwhelmed by strong emotions. Often, in the third stage, there is a period of Bargaining. (What if I…? Is my illness real? Should I trust what the doctor told me?) The fourth stage is Depression as the reality of what is going on begins to really settle internally. And, finally, one hopefully achieves Acceptance where they can then move forward again. The difficulty, as I see it, is that the majority of the time, a medical / healthcare professional informs one of an illness, they get past the shock and other two stages, and then become more knowledgable as to how they can best help in the management of their illness. With these illnesses, that typical question is not readily available. I believe that if a diagnosis that includes psychosis came along with physical pain like an abscess in one’s mouth, adults would be running to their psychiatrists as fast as they would run to their dentists!! I don’t wish this type of pain to trigger awareness, of course. However, I can’t help but distinguish the reason for so many not being willing, especially initially, to accept what their psychiatrist and / or general medical doctor is informing them. These are tricky illnesses and, yet, I fully believe that the more that we embrace a delivery of care that is rooted in dignity and respect, and promote the values of non-shaming and anti-stigmatizing experiences, the more adults will be more likely to reach their own personal acceptance sooner rather than later.

Lastly, and not to sound too harsh, however I cannot deny my own experiences. Many criminal acts, which sadly included victims, could truly have been avoided if the denial of that person regarding the severity of their mental illness was broken through sooner. I spent almost 20 years working with adults who overwhelmingly did not have criminal-mindedness nor criminal histories prior to committing a felony crime behind their psychosis and / or manic behaviors. My own brother chased my father around the house with a knife one day when he perceived our father in some type of a demonic manner and felt threatened by his presence. Instead of waiting to be harmed as he, and MANY folks that I worked with did, they take an offensive position although they believe they are defending in some fashion and in a righteous way. My brother was unable to catch my father on that almost fateful day. However, too many of the adults I spent years working with had not be as fortunate. They completed some felonious act and then needed to face that full reality once in a clearer state of mind on appropriate and helpful psychiatric medications and receiving treatment. Too often this included a loved one taking the life of another family member, friend, known acquaintance, or possibly even a stranger. Every patient in these situations wishes they had the clarity they now had prior to the tragic event. This scenario exists in our society each and every day. Very nice, beautifully-minded people under the strains of these illnesses can harm those they care the most about and not realize it during the moment. I want to see a major shift in how we communicate the need for early diagnosing and treatment, and to ensure that the services, regardless of financial ability, is readily available for all!!!

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Keeping It Real

Semantically speaking, am I schizophrenic? No, I am not. I have schizophrenia and I am a schizophrenic. I choose to address my illness in the most available way possible. I’m comfortable with the terminology because it’s accurate. It’s also my choice. I’m not allowing someone else to define my personality or my contribution to society by labeling me. I’m simply using a word to communicate something about me. If the person I am speaking to is uncomfortable with that, then they’re the uncomfortable party, not me. I stand firm in the knowledge that I am so much more than my diagnosis. Stigma and discrimination might wear me down, but not at the cost of my self worth.

thumbs-up

In a recent conversation, a friend asked me why I refer to myself as “a schizophrenic” and not as “a person living with schizophrenia”. Their main concern was that I was associating myself too closely with the illness, which, while that was inaccurate, I completely understood. When I write, I frequently state that I have schizophrenia or that I am living with it. Still, I felt their question provided a solid focus for discussion.

I am not my diagnosis—about that I am adamant—but I will use its name to define myself when appropriate, much the same way a person living with diabetes might claim to be “a diabetic”. I have a diagnosis of schizophrenia, and I call myself “a schizophrenic”. It’s my choice to use that word.

The name of my disorder means, literally, “split mind”. Not of two minds, like the ON/OFF switch or the dissociative identity disorder which it is often mistaken for, but a mind fragmented, as the term has come to be understood in the profession. There’s the real split: the clinical terminology versus the incorrect and often stigmatized public usage.

Semantically speaking, am I schizophrenic? No, I am not. I have schizophrenia and I am a schizophrenic. I choose to address my illness in the most available way possible. I’m comfortable with the terminology because it’s accurate. It’s also my choice. I’m not allowing someone else to define my personality or my contribution to society by labeling me. I’m simply using a word to communicate something about me. If the person I am speaking to is uncomfortable with that, then they’re the uncomfortable party, not me. I stand firm in the knowledge that I am so much more than my diagnosis. Stigma and discrimination might wear me down, but not at the cost of my self worth.

I have to maintain my dignity and control of my communication when I speak about living with schizophrenia. I have learned to make choices about who I share my diagnosis with and why. Some random stranger at the bus stop? Not unless I’m in a situation where assistance might be necessary. In a case like that I would keep the information to a minimum, perhaps just to anchor myself to reality while I feel it drifting away. Has this happened to me? Yes, it has. When I’ve asked strangers for help when I was having a panic attack, I generally received nothing but cold shoulders. Only once did I receive help in a situation like that. I let the person know that I had schizophrenia. They helped me out of the kindness of their heart. To have been worried about wording would not have achieved the goal.

Having a working knowledge of my diagnosis helps me communicate better about it, and I would recommend to anyone with an interest in their mental health to do the same. The more one knows about their disorder, the better. For example, I have learned that immediate short term memory loss, or “working memory” suffers greatly in the mind of a schizophrenic. I recently had to work with three different attorneys for legal counseling, and I told each one that I had schizophrenia, that my working memory falters, and that I would likely need to have them repeat themselves so that I could understand the information they were sharing with me. All three were respectful of my disclosure and treated me accordingly because I trusted them to do so.

When I meet a new person, sharing details about my diagnosis is the last thing on my mind. I want first to get to know them, later to form a bond, and then, if it’s appropriate, tell them about my mental illness. If it’s not going to affect the relationship, then I don’t need to go blabbing it about. But if it’s relevant to the friendship, then of course I open up.

Schizophrenia is a chronic and debilitating genetic disorder. Were it that society understood this simple medical fact, perhaps the storied serial- killer-in-the-hockey-mask stereotype would disappear forever from the fabric of our culture, but that’s not likely to happen any time soon. So it comes down to opening up responsibly and keeping it real with people that we trust—our therapists, doctors, psychiatrists, best friends, family, and loved ones. There is nothing to lose and everything to gain from forming and maintaining solid relationships.

The asthmatic has asthma, the diabetic has diabetes, and the schizophrenic has schizophrenia. Simple terms used to define complex medical diagnoses. The glitch lies in the stigma attached to the word. When mental health is accepted on a level playing field with physical health, then parity can be achieved and stigma can be broken. I take full ownership of the words I use to describe my self and my disorder, two separate issues requiring two distinct descriptions. I have no reason to shy away from speaking openly. We change the course of a thing by discussing it. Sharing our stories is the perfect first step.

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My Morning Cup of Love

Shame can be as bitter as any pill prescribed to heal. Shame, and the ugly things we tell ourselves to feed that shame, are so destructive. I will have to remember to talk with my therapist about this. I will have to write down what I am feeling and thinking today, so that when the memory of this fades, my treatment can still be effective.

my-morning-cup-of-loveMy husband wakes up for work at 5:30am. I am sitting on the couch, watching the news. He already knows what my answer will be, but he asks anyway. “Have you slept at all?” I shrug. He knows I haven’t slept. He knows I haven’t slept in days. He is stoic, but I know if I look up from the television, I will see his expression. It will be a little sad. It will be a little frightened. I can’t stand the thought that I have done this to him. He sighs and walks away. I assume it is to gather his thoughts and begin again. He makes us each a cup of coffee, mine in my favorite heart shaped mug. He uses the fancy, flavored creamer. He knows exactly how I take my coffee on mornings like this. After so many years of mornings like this, he knows too many things. His kindness breaks my heart.

 

He sits across from me; he is on the love seat and I am on the couch. He mutes CNN and begins to gently pour his words on me like round fat warm summer rain, each drop pregnant with the possibility of growth. I know he is praying that something he says will land on fertile ground. Grow something stronger and more resilient.

 

He says, “This is what it feels like to live an ordinary life.”

He says, “This is what it feels like to sleep in the dip in the mattress, worn soft in the middle after years of dreaming, belly to back.”

He says, “This is the way people drink their coffee.”

He says, “This is the way people grow old.”

 

I can barely hear him over the din of sounds inside my noisy head. This is the way mania affects me. It makes me feel like my heard is bursting at the seams, cracking open like a cicada shell. Like a cicada who has slept for seventeen years and whose wings are finally free to rip open the dark. When I am like this, I want to start fires. I want to plant roses at midnight. I want to gamble away our savings. I want to wager on horses and new dresses. Impulsivity nips at my heels.

 

He says, “Take your pills, Honey, and try to remember what it feels like to sleep through the night.

He says, “Be still and this will pass.”

 

“I don’t know if I want it to pass this time.” I say quietly. It has been long enough since my last manic episode that I have almost forgotten the unspeakable pain and shame that follows. Almost forgotten, but not completely. I know with certainty that I have said these words before. Still, he listens patiently, nodding, head slightly tilted to indicate he is taking it all in. I know he will never understand just how dark the darkness can be, or the way it feels taking the first few steps into mania. It feels almost euphoric. Euphoric, until the madness sets in.

 

Sunrise, sunset. Sunrise, sunset. We go around like this for a few days, then I relent and call my psychiatrist. I pretend that I am angry, but really, I am so very relieved. My doctor is responsive. He listens to the calm way I say, “I’m not feeling well.” He listens but he also watches my knee shake, watches my hands flutter across my lap like little birds. He decides it is time to update my medication cocktail. Add a new mood stabilizer. We choose together, the one with the least possible side effects. I am ready. I crave sleep like a lost lover.

 

After so many years of doing this, I know that calm will find me. I understand that I will sleep and wake to a different view of the world. I understand that I have an illness and need medication. Still, there is a very fundamental part of me that harbors the shame of hurting the people that love me most. I am devastated at the idea that I have sent my husband off to work with the image of me – hair wild, eyes wilder, drinking coffee, glued to the worst news of the day. How do I reconcile my desire to be well with my willingness to slip back into the old patterns? Shame can be as bitter as any pill prescribed to heal. Shame, and the ugly things we tell ourselves to feed that shame, are so destructive. I will have to remember to talk with my therapist about this. I will have to write down what I am feeling and thinking today, so that when the memory of this fades, my treatment can still be effective. I have begun to keep notes for her, so that I can tell her each important event, before the medicine soothes the hurts and I forget again, about the cicada and the coffee and the roses.

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The Medicine is Working

I used to believe that there was nothing wrong with me, that I didn’t have a mental illness. I never looked at my life through the lens of a loved one who wondered why their brother/uncle/son was so eccentric and obtuse, withdrawn and hyper, anxious and depressed, and socially awkward. It was never me, it was them, or so I thought.

medical-supplies-paper-bag

Some mornings I wake up and think, “I can make it today. I feel like a normal person.” What naturally follows is the thought that I’m not mentally ill and that I could stop taking these meds and get on with my life. As if in response to such folly, I find myself badgered by nervous patterns, little mini-reminders of delusional thinking. Out of the blue there’s some symptomatic “leakage” offering a nanosecond of comparison to the medicated me, and I stop and think, when clarity affords itself, “I feel better because the medicine is working.”

Statistics show that most relapses occur when the client feels stable enough that they forget what life is like without medication. I’m only eight months into using my current meds after breaking down last winter, but the symbiosis appears to be holding steady. And yet I still experience the aforementioned leakage which acts as a reminder of where I don’t want to be. So I take the pills and stay closely monitored by my psychiatrist.

Emotional flatness. Weight gain. Anxiety. Loss of libido. Side effects that frustrate me every day, and yet somehow the tradeoff seems reasonable. On the one hand it’s psychosis and hospitals; on the other it’s smooth sailing with only a modicum of doubt. The choice seems obvious.

I’ve grown weary of the derogatory statement “Off their meds” for the stigma it perpetuates, but that’s where the barb embeds itself, in the soft tissue of self confidence. If the public had any idea what it’s like to be on said meds and why, perhaps the gibe would fall flat and be interpreted as the insult that it is. I see the Queen of Hearts shouting wildly, “Off with their meds!” But there’d have to be a reason.

If I wanted to stop taking the medicine for a legitimate health concern, say, the onset of Tardive Dyskinesia, my doctor and I could put a plan into effect which could wane me off the medications over time. Better than electing to go cold turkey on my own and run the risk of damaging my body and my brain. But so far, so good. I’m getting past the point where TD is a consideration, which is a relief. It’s all about remaining flexible in my thinking, running the same kind of life that I would were I not mentally ill. A nutritious diet. Regular sleep. Exercise. I don’t need to be Superman, I just need to be healthy. Talk therapy in conjunction with the medicine— always a good idea. Self-care includes a lot of outside help. Taking a proactive stance in my treatment is something to be proud of.

I didn’t always see it this way. I used to take the position that all medicines were bad for me because they would take away my personality. Watching my friends laugh when I tell a joke, having them compliment me when I write a new piece, these are indicators that I’m not a lifeless zombie.

I used to believe that there was nothing wrong with me, that I didn’t have a mental illness. I never looked at my life through the lens of a loved one who wondered why their brother/uncle/son was so eccentric and obtuse, withdrawn and hyper, anxious and depressed, and socially awkward. It was never me, it was them, or so I thought. When my former boss suggested that I seek help after watching my work and attendance slide, I felt insulted at the suggestion that an Employee Assistance Program was being offered to me. Apprehensive, I saw my first therapist for the requisite three sessions paid for by insurance. Later I found myself working with a different therapist who had a sliding scale, which afforded me the chance to increase my sessions to twice weekly, helping me to bond further and benefit from it.

As I learned more about myself, I learned more about my illness. My diagnosis of schizophrenia hit me like a ton of bricks, but on closer inspection, it made perfect sense. When I’d suffered through my most recent psychotic break and subsequent suicide attempt, and then agreed to medication, my life changed for the better. I was no longer in resistance to the reality of my situation. I accepted that the doctors knew more about my illness than I did, that they had a perspective which put them in the unique position to help me. All I had to do was accept that help and quit white- knuckling it through one episode after another, one more trip to the hospital, one more round of shame.

Some mornings I wake up and say to myself, “I can make it today despite being mentally ill,” and some mornings I don’t need to say anything at all. Because the medicine is working.

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Connection

While most folks might talk about how well their kids are doing in school, how their vacation plans are shaping up, or how grueling their recent tax audit was, we share stories about therapy, medication tremors, and drooling. And we find humor in it. Because we can. Because it takes out the sting. We find a commonality that we can’t share with the general population, not even our psychiatrists or therapists.

connections-coffeeDid you hear the one about the two mentally ill people who went out for coffee together? They shared a sandwich and a cookie and talked for three hours about things they had in common; this strengthened their friendship and they had a lovely time. Maybe not quite the punchline you were expecting, but it gets the point across—just because we’re mentally ill doesn’t mean we aren’t human.

The people in the above paragraph are myself and my friend Nika. She lives with bipolar disorder. I am a paranoid schizophrenic. We met in the psych ward last winter. We discuss things we have in common: theater, movies, people watching and poetry. We speak openly with one another about our diagnoses, sharing the moments which punctuate our lives in the ways that only living with a mental illness can.

We talk about the side effects of our medications. We highlight the weirder things we’ve experienced when symptomatic. We do this because it gives us an opportunity that we don’t have anywhere else: a time-out from living with the normal world, where we get to share the aspects of our lives which make us feel like outsiders. While most folks might talk about how well their kids are doing in school, how their vacation plans are shaping up, or how grueling their recent tax audit was, we share stories about therapy, medication tremors, and drooling. And we find humor in it. Because we can. Because it takes out the sting. We find a commonality that we can’t share with the general population, not even our psychiatrists or therapists.

We’re like two kids at camp reading our comicbooks with a flashlight. By sharing our secrets we form a healthy bond, a fellowship.

Discussions include topics like self-care, coping strategies, and how stigma and bullying affect us. As could be expected, the subject of loneliness takes a big chunk of our time. Neither of us have love interests, and we’re not involved in that dynamic together. Rather, we console one another. The theme runs the gamut from sadness for how lonely being mentally ill and single is, to laughing about our individual mishaps in the arena of romance. It does the heart good to have someone to talk to.

Nika is an actor. I’m a writer. We can discus art for hours and often do. We’ve been to the zoo together, gone spelunking through the curio shops, paced ourselves on a lap around the park, and joined fifteen-hundred other like-minded individuals on the annual NAMI Walk.

It occurs to me how, through discussing our mental illnesses, many of us can blend into the tapestry of everyday life, feeling comfortable in our own skin. That comfort level, I am fairly certain, can only exist between fellow travelers. I’ve put that theory to the test by trying to discuss my symptoms and perceptions with non-mentally ill people, and I just can’t seem to catch the same buzz. Too often there’s a disconnect, likely due to how unfathomable a life of symptomatic experience can be. Not that normal people don’t try, it’s just outside their reach—and that’s all right. I respect that. Expectations would only cause frustration for both parties; counterproductive when the aim is open communication.

Sometimes I wish I could indulge in divulgence, but I recognize that it’s probably for the better that I don’t. People tend to get confused when they try to comprehend the world of the mentally ill. Nothing says they have to— that they’re willing to listen is, in itself, enough. Empathy is a good thing, even if it’s fleeting. Challenges can arise when, due to symptoms, the mentally ill speaker is perceived to be self-absorbed. A thought disorder often makes tracking very difficult. Hyper-communication is not always my best friend.

Staying in the conversation is key. Avoid listening ahead or speaking behind. Your turn will come.

Maybe mentally ill people give one another a wider berth when they’re sharing because they’re accustomed to the rhythm from talk therapy. They pick up on the subtleties because they’re more in the moment than they’re given credit for. Sharing their stories with another, be it a lay person or a mentally ill peer, is paramount to sound mental health. Not only does it bypass stigma and discrimination, but it allows the person space to breath, to find their own pace, to feel safe.

We pay our tab like every other patron in the coffee shop and head out to catch the bus. It’s a crisp late-summer afternoon. We are the only people wearing mismatched prints, ultra-bright clothing, and laughing at our own whimsy in the face of the odds. In a sea of hipster black we stand out, separate but equal. Connected.

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The Power of Shame

When I finally went to the hospital and was diagnosed with bipolar 1 disorder I was relieved that there was a reason for my lousy behavior but, I still felt ashamed. It’s difficult to live a life permeated with bad behavior and then all of a sudden be told that you have a brain disorder. WHAT?? No, that was ME who made those decisions! Why has it taken so long to figure this out? What is me and what is my disorder?

Let me count the ways…

I have been ashamed of my behavior, am still ashamed of my medicated and overweight body, am still ashamed of having to tell friends that I can’t stay out late because I have to get my meds into me or I won’t sleep all night. Let’s see, what else –

I think that basically I have been ashamed of myself for most of my manic/depressed life. I wasn’t properly diagnosed and medicated until I was 50. That’s a lot of shame! I’m now 63 and no longer ashamed of my present day life. Sometimes I wish I could drink but know just where that would lead and it wouldn’t be good.

Sometimes I wish I could stay out late but know that I have to get my meds into my system or I won’t sleep all night. I even tested staying up all night when I was traveling to speak at a mental health conference – I didn’t get to a hotel room until 2am in the morning. I had to be up to catch a plane by 5am and knew that if I took my meds I wouldn’t be able to meet that 5am deadline. I thought I could sleep for a couple of hours without my medications. Nope. I was up all the rest of that night. The secret pleasure I got out of being up all night for the first time in a long time fed my desire to be manic again, for real. The next night I had to re-visit where my mania had taken me before I was given medications and the meds won.

That review wasn’t uplifting! I recalled always having to have 2 men strung along, not knowing about each other, fulfilling my grandmother’s announcement that I was nymph-manic. I remember that once, when I was in my early twenties, a pair of those men met each other and I wanted to sink into the ground: my shame was so intense I wished to sink into the earth and be covered by dirt. I didn’t know how to stop myself and would soon recruit two more lovers.

I remembered that awful feeling when the mania was getting old and the pressure inside my body had built to such an extent that all I wanted was a bit of peace. At that point I would reach for some serious alcohol to bring me down. And that it did, for an evening maybe. Then I would start all over again. And again. And again. The pressure would cause me to become mean to whomever was around. Once I came down from the mania I would be horribly ashamed, apologetic. After a while the adult people in my life would finally walk away.

My daughter, Mattie, was eight when I sobered up. She took me into our bathroom when I was about a week sober. She said, “Mommy, you were so much more fun when you drank!” I daresay I was, but I don’t think she was thinking of the times when I lied to her and told her I had the flu when in reality I was sick from alcohol. My behavior those days was a violent mixture of mania, depression and alcohol. I would not want to relive those days. I was ashamed of who I was and ashamed of my inability to stop being who I was.

When I finally went to the hospital and was diagnosed with bipolar 1 disorder I was relieved that there was a reason for my lousy behavior but, I still felt ashamed. It’s difficult to live a life permeated with bad behavior and then all of a sudden be told that you have a brain disorder. WHAT?? No, that was ME who made those decisions! Why has it taken so long to figure this out? What is me and what is my disorder?

It’s taken me a long time to stop beating myself up, to stop the shame. Shame is a powerful emotion and it had me on my knees for too many years. I still cringe when I think of some of those behaviors. But I’m not like that anymore. Thank God! Thank modern medications and my family and the friends who didn’t desert me. I wish I could have the ups with no downs but it doesn’t work that way.

I encourage anyone with a mental illness who is carrying shame to let it go, like a helium balloon, and then you’re free.

balloon-shame

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Being There

My role now is still to be there for my daughter, just as I am for her sisters. But ‘being there’ has changed over the years. No longer does it mean helicoptering or hovering. No longer does it mean vigilant, 24/7 monitoring of medication compliance or safety checks. No longer does it mean advocating for treatments and school accommodations. Today, ‘being there’ means giving space while giving love.

Ladies and gentleman, we’ve been cleared for takeoff”. The captain’s voice came over the loudspeaker with that familiar phrase. As the plane’s engines roared with power and I felt myself pushed back into my seat, I closed my eyes and took a slow, deep breath. Squeezing my eyes tightly, I attempted to push back the tears that were welling up in sync with my emotions. 19 years of dreams, plans, fears, heartache and triumph all culminated in this moment. My baby, ‘Caitlyn’, was starting college and I was heading home, a thousand miles away.

This was hardly the first goodbye and long distance separation between me and my precious daughter. The first time, she was 11, and had just been admitted to a residential treatment center. It had felt like my heart was being ripped out of my body, crushed under a boulder, leaving a gaping hole, an endless void. The second time Caitlyn was 16, again admitted to a treatment center, so angry with me that there were no goodbyes. Just silent tears and that same awful void. Both times I knew that, as clinicians and dear friends had reminded me, I was doing this for her, not to her. But that didn’t ease the pain, guilt, second guessing or fear that our relationship would be irrevocably broken.

This time is different. Completely, totally different. This time the choice is my daughter’s, with a small amount of guidance from me and her dad. This time she’s earned the separation as a rite of passage and a shining symbol of her hard work. Not just academic work – that’s the least of Caitlyn’s accomplishments. A significant part of her work will never show up on a resume or be celebrated with a trophy, certificate or diploma. For my daughter, and other young adults around the world who are living with a mental illness, we quietly, joyfully celebrate the accomplishment of health.

Living with a chronic illness means learning to manage the illness rather than allowing it to manage you. This involves learning about the illness, one’s own body, treatment options, medications, side effects, alternatives, warning signs of flare-ups, sleep, diet, exercise, triggers, advocacy, relationships and boundaries. Caitlyn has learned about balance, about having it all but not all at once. She’s learned how to be true to herself, to go after her dreams, to have patience, to love and to be loved. She’s gone from hating the world, hating her illness and wanting to die to loving life, finding passion in each day, and appreciating what many of us take for granted.

What have I learned as a mom? What do I need to remember each time the tears well up in my eyes or I reach for the phone to text a reminder or ask how she’s doing? I’ve learned that my daughter is a capable young woman. She is not the frightened, confused little girl whose emotions took her on an unpredictable rollercoaster with little or no warning. Caitlyn knows how to take care of herself and to weather the bumps. She knows how to ask for help and not just from me. I’ve learned that my daughter has the right to make mistakes and to figure out solutions.

My role now is still to be there for my daughter, just as I am for her sisters. But ‘being there’ has changed over the years. No longer does it mean helicoptering or hovering. No longer does it mean vigilant, 24/7 monitoring of medication compliance or safety checks. No longer does it mean advocating for treatments and school accommodations. Today, ‘being there’ means giving space while giving love. It means listening to what’s important for my daughter. It means asking questions rather than offering advice (unless she specifically asks for my opinion). It means resisting my urge to ‘fix’ everything (which might seem easier and faster than letting Caitlyn figure things out herself). ‘Being there’ means gently guiding or encouraging my daughter as she figures out what, when and how things need fixing. Sometimes that even means not answering that phone call or text. Waiting an hour often results in ‘never mind, Mom, I figured it out’. My daughter has earned the right to have those moments.

Caitlyn has a strong support network that we’ve built together and that she continues to build on her own. I’m still a part of that network but I’m not necessarily the epicenter. Nor should I be. I do still have a responsibility to stay tuned in and to be alert for warning signs. As a mother some of that is just hardwired into me and will never go away. But I have an equal responsibility to let others in the support network get in line ahead of me as they offer their own unique brand of support based on their own unique experiences and personalities.

For the past two years I’ve struggled with a love-hate view of my changing relationship. Part of me has longed to shed my caregiver cloak. Part of me has struggled with who I will be without that familiar, comfortable identity. Just as Caitlyn’s been working hard to take this next step, I too have had my work cut out for me. Caregivers in particular are vulnerable to becoming co-dependent and vice versa. I know at an intellectual and emotional level that I do NOT want to take on that role. But I have to be alert to signs that I’m hanging on, or that my daughter might also be slipping back into the comfort of the familiar. When I start hovering, looking for problems, jumping into ‘fix it’ mode I’m being co-dependent. When I welcome requests from my daughter to take on tasks that I know she can handle, when she turns to me more than to her friends, professors, counselors or others in her network, I’m at risk for encouraging her to be codependent. Either way, she and I stifle ourselves from the growth we both deserve.

Having adult children can be an absolute joy. I know this both personally and professionally. It can also be nerve wracking, frustrating and a true test of patience. I’ve long said that as my children graduate from high school I spend more and more time sitting on my hands and putting Duct Tape over my mouth! What that allows me to do is to use my sense of hearing to really listen to what my adult children want to share. I get to be reminded of just how capable my daughter has become, how each day brings new experiences and discoveries, new opportunities to face challenges, disappointments, struggles and to get through them. It may not be pretty. It may not be the way I would do things. But that okay. That’s how we all learn.

A few days before she left for college, Caitlyn and I were having a discussion about the merits (or not) of certain supports that I felt strongly needed to be in place for her. My wise and resilient daughter looked at me and said ‘Mom, I have the skills to use. That’s what I’ve been working on for the past 8 years. I know what to do if things get rough.’ She was right, she’s been working so hard for this milestone. All I could do was hug her and say ‘You’re right. Please just promise me one thing. Please just promise me that you’ll ask for help if you need it’. She smiled and nodded her head in agreement. And I smiled back.

 

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Part III

The longer that Howie remained at Greystone, the more he began to be called by different nicknames. The most popular (and, remember, his peers were all 15 to 17 years old) was "Crazy Howie". Over time, amongst the large group of peers we both knew, I became known, by extension, as "Crazy Howie's Little Brother". I didn't like the nicknames for Howie or for me. I like it even less, at this time, as I recognize it for all of it's insensitivity and rudeness. It reminds me of the greater level of both a pervasive unknowing and a continued heightened level of ignorance which still exists today.

So, the story continues… My sweet dear brother, Howie, unfortunately and sadly, had to endure many psychiatric hospitalizations due to either serious suicidal thoughts and / or actions, or, at times, when the depths of his psychosis prevented him from functioning toward the maintenance of his daily hygiene and activities. The longest hospitalization occurred during his late teen / early adulthood years. His functioning had deteriorated significantly. He was responding frequently to internal cues, voices, and any and all interference in his brain on a regular basis. He began to anger quickly and, in general, couldn’t seem to regulate his emotions. He was smoking close to 2 packs of non-filtered cigarettes daily and often chain-smoked. On one awful day, he perceived our father as demonic and chased him violently while grabbing a knife from the kitchen. Thankfully, our father was faster and was able to get to safety. As far as I can remember, that only occurred once, but, for the fear of what could have been, it was once too many. 

Within a short period of time later, Howie was formally conserved under the mental health laws of New Jersey as being gravely disabled and was placed at Greystone Memorial State Hospital in Morristown, NJ. Let me be clear from the start – this was then and now is now. But, it was what it was. For all of you who have watched One Flew Over the Cuckoo’s Nest in the ’70s, the film almost perfectly depicted the custodial, sterile care (minus the intensity and drama created). The staff, for the most part, kept their distance from the patients. Psychotropic medications were ordered and dispensed by line staff, but they were nervous, if not scared, at times of the bizarre and often unpredictable behavior of the patients. Alas, the physical distance was maintained between the staff and the patients for decades. There also wasn’t much treatment to speak of nor were the mental health professionals and / or psychiatrists making themselves available. They did not make time to confer with the grieving relatives and / or significant others.

During this period, I remember Howie being understandably upset at times with our parents for being there, especially in the first two years. He couldn’t understand how people who claimed to love him could leave him in a “place like this!”. He also, at the same time, had extremely limited insight into his own feelings, thoughts, and ensuing actions at this phase of his illness’s impact. He was under the throws of a strong mental illness that often won the internal battles that Howie fought so valiantly. He had great difficulties focusing solely on us during our visits. The intrusive voices that he heard in his head are now understood by me as symptoms of his mental illness – auditory hallucinations. But, without knowledge or explanation, we were all left in the dark to guess what we thought was happening to him. Greystone Memorial State Hospital, and psychiatric facilities in general during this time period in our country, provided antiquated care and services, treatment approaches, and psychiatric medications compared to those of the more modern era. However, it was the best they had available and they were not being challenged to deliver anything more. At one tragic point during this hospitalization, my brother received shock treatment to assist him with his Schizophrenia. There was no empirical evidence to show positive results and it was used more so as a form of restraint especially to quiet down the more “vocal and outspoken” of the patients (similar, but not as extreme as, the outcome for Jack Nicholson in One Flew Over the Cuckoo’s Nest. Today, that would be considered abusive. ECT is still used and can be effective with ONLY long-term depression and only after someone has failed on multiple anti-depressants over extended periods. And, in that regard, it is a highly-monitored treatment.

During this era, for one to need ANY psychiatric help seemed to translate directly toward a sense of a weakness, of mental frailty, and an overt failure of will on the part of the person who was stricken with these type of symptoms. They didn’t have enough fortitude of rational thinking, strong character, and / or were just plain weak-minded!! Someone evidently possessing the contrast to these human fallibilities would, therefore, with the previous logic, conclude by this reasoning that they actually have the power to prevent a mental illness from developing in the first place, or trying to take over someone’s life. This was the societal mantra seemingly across all races, ethnicity, and cultures in this country.

The longer that Howie remained at Greystone, the more he began to be called by different nicknames. The most popular (and, remember, his peers were all 15 to 17 years old) was “Crazy Howie”. Over time, amongst the large group of peers we both knew, I became known, by extension, as “Crazy Howie’s Little Brother”. I didn’t like the nicknames for Howie or for me. I like it even less, at this time, as I recognize it for all of it’s insensitivity and rudeness. It reminds me of the greater level of both a pervasive unknowing and a continued heightened level of ignorance which still exists today.

Little by little, over time, our family gradually began to initially experience a subtle and then more blatantly explicit shaming of sorts. We began to not receive invitations to larger family affairs that prior would readily have arrived. It hurt my Mom and Dad tremendously. They knew the reasoning of these friends and relatives was that of worry / fear over Howie’s potentially unpredictable behavior during a formal gathering, which may have cost thousands of dollars. It was just “safer” to not invite us! I was too young to realize the level of stigma and discrimination that was going on. As a family, we began to feel like “lepers” being outcast from the tribe and that this was necessary for the greater good as if Howie was carrying around a deadly transmittable disease. There was an unspoken fear and paranoia going on during these times. Irrational as all this may be, it was an era when relatives whispered that someone they knew had cancer and would only say, in the quietest voice, “Did ya hear, Aunt so-and-so got the ‘c’.”. Somehow, this would decrease the likelihood of transmission by not talking about it too loudly. Someone might catch it!!! This same uninformed and uneducated mentality was tripled when it had to do with a mental illness. Howie and our family had been severely stigmatized, and it left me depressed, angry, anxious, and far from feeling grounded. All we knew was that it hurt, and badly.

Howie was discharged from Greystone in his early 20s. He moved to New York City, and then, eventually, followed a passion which led him to San Francisco. He was a musician, a writer, and a latent hippy. He wanted to put himself in the middle of what he felt was still a creative mecca in the 80s. I moved to San Diego, CA in 1984, and, over time, was able to find and visit with Howie prior to moving up to Northern CA. Once relocated, I would go into San Francisco, and, sadly, find my brother living in squalor in the Tenderloin section of the city between Market and Mission streets. He was not taking his psychiatric medications and was, instead, self-medicating with his SSI funds. This was typical, and he was still taking older medications. The newer psychotropic medications to treat thought disorders and psychosis began to emerge in 1991 with the advent of Clozaril. I used my increasing knowledge in my effort to help Howie. For safety sake, he passed on the Clozaril due to the necessary frequent blood-draws associated. He elected to try Risperdal at one point, but it wasn’t effective for him so he returned to his older familiar medications. It turns out the company was wrong in their thoughts about how many milligrams would be clinically beneficial and he was under-medicated. Eventually, at around the age of 34, he decided to stop self-medicating with alcohol and street drugs. My wife and I helped him get cleaned up for a bit, and, then, he went back to NJ by way of a Greyhound. He lived with our parents for a while, and lo and behold, his name pops up on a Section 8 HUD housing waiting list, which he had been on for 6 years. He had his own apartment, was working at a job just under 20 hours a week, was collecting SSI, and he had gone back to school at Morris County Community College where he was getting A’s and B’s for grades. He was only about 7 credits shy of his Associates Degree with an intent to return to CA and pursue a BA program. He was very proud of himself. He did all of this for him, and not to prove anything to anyone else.

Tragically, my brother took ill at the same site on the top of his head where a shunt had been implanted 20 years earlier to help reduce pressure from his bout with Hydrocephalus. This time, a cyst and a tumor were found at the site. My brother’s health declined rapidly, and he was not able to fight physically any longer. We lost him in 1999 at the age of 40. I’ve already lived 15 years longer than him, and do not take any days on the planet lightly. I carry his story – his struggles and triumphs. And, in telling about his demise, I also carry the bittersweet reality that he pushed himself through so much and still had self-regard and self-respect in the end. He did not have to return to school, or have “larger goals”. Everyone would have understood.However, he was beginning to show us what recovery looked like!!! 

Thankfully, today, the knowledge has grown and the ignorance is continually reducing. There are mental health professionals, in many private and public settings, that are taking the time to provide thorough psycho-education to family members and significant others. As an LCSW at Napa State Hospital for 25 years, one of my favorite parts of my job, and given my background it shouldn’t be surprising at all, was to help those who love and are concerned for the person trying to manage a serious mental illness. As they gain knowledge, their compassion and level of insight grows tremendously in sync. The goal is always to treat any illness at the lowest possible level of intervention which will help ameliorate the problem or bring it to a point of effective management. This is true for self-management of an illness, or those that require additional medical and / or psychiatric assistance. Hope should be increasing as more and more people become aware of what a mental illness is and what may both cause it to occur and or flare up. Developing solid, and realistic relapse prevention plans, is critical to living with a mental illness. Sharing it with a few selected, highly-trusted adults, along with professionals, is certainly the ideal. Wishing all positive mental well-being!!! 

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Titanic

Nine-tenths of what I can’t see is stuff I’m keeping to myself—things I won’t discuss in therapy, fears I won’t express, self-stigma I won’t face up to. If I don’t speak about it, it’s not real. Which is not true. That’s just fear and naïvety. What do I have to gain by sabotaging my mental health? Nothing.

titanic 2A question that continues to come up for me is whether or not I have a mental illness. Over breakfast this morning I spoke with my friend Jeff, pondering the possibility that perhaps the four psych-evals I’ve had were rigged and that the dozen or so psychiatric professionals I have spoken with over the years had all come to the wrong conclusion. They think I have schizophrenia. But what if I don’t. What if I’m as sane as the next person, despite what the evidence shows?

Jeff chuckled. Not in a condescending way, but in the way that your best friend will laugh along with you when you realize that what you’re saying is too outlandish for words. It helped to ground me. After all, he’d been to the hospital with me for panic attacks and psychotic breaks as often as three times a year over the past nine years. He was by my side in the psych ward when I’d attempted suicide. There’s a history there which supports the doctor’s findings, yet sometimes I still question the diagnosis.

Of course there’s the medication and the hundreds of hours of therapy to consider. To what end? They say that when one feels normal it’s because the meds are working. So where is the root of my suspicion? Why would a dozen professionals lie to me? How far does this conspiracy spread? Is it all being done to line the pockets of the insurance companies and Big Pharma? Am I just being paranoid?

Ninety percent of an iceberg is typically underwater. Only the tip can be seen above the surface. There is no nefarious plot against this party of one for the reasons of “just because”. Nine-tenths of what I can’t see is stuff I’m keeping to myself—things I won’t discuss in therapy, fears I won’t express, self-stigma I won’t face up to. If I don’t speak about it, it’s not real. Which is not true. That’s just fear and naïvety. What do I have to gain by sabotaging my mental health? Nothing.

I worked hard to achieve and maintain the stability I do have. In the maelstrom of voices and hallucinations I was a tiny titan. Letting go of those tireless efforts meant trusting that the doctors were right. The preponderance of data collected should have been proof enough but I couldn’t see it, resulting in a trace of the symptom called anosognosia, a lack of insight or awareness of one’s illness. My question today is how this symptom, transient though it may be, continues to shove my back against the wall. I should know better. I’m educated. I’m medicated. But there it is nonetheless, punctuating my breakfast conversation, the query to beat all queries: what if I’m not sick? What if everyone else is wrong?

It’s easy to take the position that I am not my diagnosis, which, on the one hand, is absolutely true—to “be” one’s illness would be patently absurd. On the other hand, if I meet the criteria, then, yes, that diagnosis is mine. I live with schizophrenia. There is no fault or blame. It’s a genetic disease, one I’ve had all my life and will have until death—chronic and debilitating, yet manageable to some degree. If I don’t like those odds, what’s my recourse? Pump up my ego and act out defiantly? Protest? Against whom? Who do I hang in effigy? Myself? All that aggro is so counterproductive.

My mind is locked in an argument with itself. I have no way to override it. Logic doesn’t work. Proof does. So it gets down to surrendering my self- conscious position and allowing the doctors I’ve entrusted to implement their practice. The psych-evals were not rigged and the therapy sessions were not futile. Their conclusive evidence spells it out; I can’t, or sometimes don’t want to, concur with their findings. Symptom or self image, one or the other, blocks the truth. I can live with the pain or find relief. It’s up to me to take that step.

It gets down to this: I can’t see what I can’t see. It’s beyond my control. My only course of action is acceptance. That’s where empowerment is found.

Is it a challenge to sail by the tip of that iceberg, navigating waters I’m still learning about? Yes, it is—that’s the process. Do I have what it takes to steer clear of the missteps and pitfalls? I think so. That’s where faith comes in. Can I see my situation through the lens my doctors and therapist do, see a pathway to something better than a tumultuous crash with no future? Absolutely. That’s called participation. But does this mean that I won’t question my situation from time to time? No, it does not. Because I’m only human.

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The Power of Fear

There is enormous power in fear, almost as much power as love. I like to think that love wins every time but, when psychosis hits, I do think that fear overwhelms love. It’s up to our families or partners to love us and get us help and, in that respect, loves wins.

I’m afraid of everything. Fear is what I keep locked inside me and is what I pretend to not have. My personal support system requires that I keep this fear inside of me. I find it sad that many times the fear, the fear inside the mental illness, shows in our eyes; those who observe us find our eyes frightening when in fact it’s us who are afraid.

Some of the things I’m afraid of or have been afraid of:

The supermarket

Making appointments

Walking outside my front door

Going outside when it’s dark

Writing a blog!

Considering that I used to let bags of garbage accumulate by the front door because I was too frightened to face whatever it was outside, I’ve made great strides. I can be afraid but I can also tell fear to leave me alone, most of the time now.   The object of my greatest fear was something akin to the sci-fi monster in Predator, one of my favorite movies, (believe it or not!). Having something ‘out there’ was very much a part of my terror before I was treated with anti-psychotic medications.

When I was a little girl in elementary school, I was sick all the time and chalked up more absent days than any other child in my class. My doctor’s name, how could I forget, was Dr. Kitchen. One day, when I was in his clinic for probably a cold, Dr. Kitchen asked my mother to please leave the examining room (this was 1961) and after she left he turned to me. I remember that I was sitting on the examining table, my little legs swinging back and forth, until he began talking to me. He told me that he thought I was faking being sick, that I needed to stop being sick all the time, that there really wasn’t anything wrong with me. I remember my heart sinking, everything sinking actually, into myself; I created a part of myself that day, the part that hides and toughs it out. I don’t think I made myself get sick but I wonder. Mine wasn’t the happiest of childhoods and I treasured those few months when my mother was around every year. When I got sick and she was there she would bring me toast, lathered with cinnamon butter, and read to me and buy me dot-to-dot books. I would snuggle next to her warmth while she read to me and every time we came to the end of a chapter I would say, “no! don’t stop!” and she would comply. In a twisted scenario my mother’s presence taught me the rewards of being sick.

A friend of mine told me that she heard an esteemed gentleman say,  “There is no such thing as good fear.” I’m not so sure about that. Now that I’m cognizant of where I am, and what I should be afraid of, (thanks to modern medications) I think fear has kept me safe during those times when I was not functioning in the world of reality.

There is enormous power in fear, almost as much power as love. I like to think that love wins every time but, when psychosis hits, I do think that fear overwhelms love. It’s up to our families or partners to love us and get us help and, in that respect, loves wins.

I don’t get sick like I used to although I was supposed to get a crown from the dentist today and cancelled because of a head cold. Suspicious but I have had the cold for a week.

My mother has passed but memories of her cinnamon toast and reading have stayed with me. I was able to pass those cozy times on to my daughter and now on to my granddaughter. There is nothing about fear that I have passed on; love wins.

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Irrevocable Change by Sarah Byrne

On March 1st, our lives irrevocably changed. My work is to ensure that this change will not be in vain. I support Bring Change 2 Mind, and hope that you will join me. Please share this opportunity with your community, and help to support an extraordinary cause – ending stigma! Treat yourself or someone special as we help raise money and awareness at the same time (10% of proceeds of items purchased from this link now through September 30th will go to Bring Change 2 Mind). Please spread the word.

Donnie IMG_6619

On March 1st, my life, and the lives of my 4 children, was irrevocably changed. My husband, a handsome and successful family man that put everything and everyone ahead of himself, had just completed the most successful year of his already impressive career.  Donnie’s laugh was louder and more infectious than most. With a quirky sense of humor, he immediately put those he encountered at ease. His hugs – whether to his children, me, a friend, or an 80-year-old stranger – were filled with warmth and sincerity.  He was the life of the party. Everyone was “Team Donnie”.

Donnie also wore a mask. He had suffered from alcohol addiction and co-morbid anxiety. After a number of attempts, he was clean and sober for 15 months.  Finally, I had the charismatic man that I married back! Our family, with 4 kids ranging in age from 21 to 7, was full, loud, and perfectly imperfect. Donnie had found a great psychiatrist and was on medication that seemed to stabilize him. It looked as though we had gotten through the tunnel and could now enjoy the light. Of course we felt the normal stresses of life. On February 29th, my husband called to ask me to make some changes to a flight to Hawaii we had scheduled for late March.  He needed to take a professional course that conflicted with our travel. He had e-mailed his psychiatrist to confirm that our dates would not conflict with his next appointment. The morning of March 1st, Donnie routinely had breakfast and left for the office.  We spoke briefly on the phone.  At 10:00 am he spoke to his best friend and colleague about a business deal. At 11:00 am he laughed and joked in another colleagues office discussing business.  Around 11:30 he abruptly, and uncharacteristically, left his office without cleaning up or shutting down his computer.

As a family, we always sat down to dinner at 6 pm. My husband wasn’t home. His phone was turned off.  I was concerned. He always called or texted to let me know if he was going to be late. At 8 pm two men arrived at my door, “I am so sorry, we have the worst possible news,” the coroner said, “your husband took his own life”. Time of death 12:47 p.m.

My husband wore a mask.  I had no idea he was in crisis. He was clean and sober, and, I thought, happy. Why? We believe he started feeling so much better that he felt like he didn’t need “those drugs” anymore. We believe he abruptly discontinued his medication without consult from his Doctor. My husband felt the stigma attached to mental illness and couldn’t accept his biochemical imbalance. He couldn’t accept his diagnosis as he might have accepted any other physiologic disorder. His disease was in his brain, not liver or heart. He didn’t have diabetes. He had an illness, not unlike those that affect these other parts of the body. But, because of stigma, I believe he felt ashamed.

On my way to grief counseling with my 7-year-old twins, my son asked me if, when he had the talking stick, he could say, “My Dad died of mental illness.”  His twin sister cried, “No! That is so embarrassing.”   How? How does this seep into the mind of a 7-year-old child?  We talk at length about the fact that she wouldn’t have been ashamed if Daddy died of cancer or heart disease. There is no shame in Daddy’s illness. Only sadness.  I never want another child of a person suffering from mental illness to feel this way or a family to suffer through (a wrongful) shame. I never want another person to feel the need to suffer in silence when treatment is available.

On March 1st, our lives irrevocably changed. My work is to ensure that this change will not be in vain.

I support Bring Change 2 Mind, and hope that you will join me. Please share this opportunity with your community, and help to support an extraordinary cause – ending stigma! Treat yourself or someone special as we help raise money and awareness at the same time (10% of proceeds of items purchased from this link now through September 30th will go to Bring Change 2 Mind). Please spread the word.

 

 

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Before and After Science

I have nowhere to go but up. I need to ask questions. I need to be acknowledged with answers. It’s about respect and information. Choices and determination. I have the potential to be a vital and integral cog in society. I tell my story because I want it to mean something. In that way I am no different than anyone else. There is still a battle to be fought against stigma and discrimination, but my current objective is to subdue the vexation as I step out of the mind’s cage and into the real world. Only then will I be fit enough to advocate unfettered.

before and after scienceThe nightmares have stopped, which is a first since childhood. I like to think my medicine has something to do with that, but I don’t want to believe in a false miracle. For now, I’ll let the drug-sleep and dreams be their own little perk.

This is normally a time of year when my symptoms reach a cyclical peak, and so far, to some degree, the medication seems to be controlling that. Nevertheless, certain delusions appear to be making their way to the surface. It’s disquieting.

I try to discuss this with my psychiatrist, but it seems there’s no room for misapprehension; the story boils down to how well my body is responding to the meds and nothing more. Since my blood work doesn’t show any irregularities, I’m considered good to go. States of mind are something left to therapy, much as financial and health concerns are the domain of case management—compartmentalization at its most efficient. No reason to mix up the disciplines. Still, as in the case of the nightmares, I could use a break. I need answers as to why the only emotions I appear to experience are depression and anxiety. I understand that those two may present from time to time as side effects, but where is the rest of my humanity hiding? I wonder if this near vegetative state is what the psychiatric community considers the status quo for rebalanced mental patients.

The antipsychotic medications are meant to reconstruct my neural pathways. That’s their primary function—to keep my over-inclusive states in check and help me to communicate more clearly. So far it feels as if they’re damping down any semblance of normalcy concerning emotion, and that’s unsettling. I can’t get an answer. How can I engage or be engaged when I’m lacking the proper tools? I am an artist whose life is bereft of color. Sidewalk chalk in a downpour.

People who have known me before and after science say that they notice a difference, mainly that my speech is more cohesive, and that my agitated states are nowhere to be seen. This must be good for them—they don’t have to listen to Chicken Little fret so much about the contents of the sky.

But what about basic human connections? For example, I recently attended a picnic and spent most of the day alone, talking with no one and eating by myself, not because I wanted to, but because I couldn’t conceive of anything other, couldn’t interface with anyone for the life of me. I sat in my chair and watched the world go by, all the while wondering when I was going to show up.

This can’t be all there is. I didn’t sign up for this. Sure, the positive symptoms (hallucinations, unclear thoughts, false beliefs, and unusual behaviors), the negative symptoms (challenges with daily routines, low energy and motivation, the inability to enjoy activities), and the cognitive symptoms (poor memory and concentration, difficulty integrating thoughts, disorganized thinking) of schizophrenia all seem to be somewhat diminished, but at what cost?

Normal people have a range of emotions. I don’t. How is this better? And better for whom? Clearly now the outside world no longer has to contend with a man who thinks so far outside the box that the box itself needs redefinition. Over-communication and hypervigilance no longer need to interrupt the lives of the people I meet. I am docile now, the very picture of ignominy.

Since I’ve accepted medication I am no longer imprisoned in my own mind. I feel those walls reshaping themselves, hopefully into something better. This is good. Simultaneously, I find myself covered in shame for ever having been sick. This is bad. The stigma of living with schizophrenia has turned its ugliness inward. I can only see myself as the man who needed reconditioning in order to walk among normal people, like some creature from an atomic age monster movie. Except that I am also the anti-hero reaching out in vain, the soul of the beleaguered. A lab rat.

I have nowhere to go but up. I need to ask questions. I need to be acknowledged with answers. It’s about respect and information. Choices and determination. I have the potential to be a vital and integral cog in society. I tell my story because I want it to mean something. In that way I am no different than anyone else.

There is still a battle to be fought against stigma and discrimination, but my current objective is to subdue the vexation as I step out of the mind’s cage and into the real world. Only then will I be fit enough to advocate unfettered.

I want to laugh and cry again. I want to love and be loved. These are the growing pains. This is my life right now.

 

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“What do you mean you have depression? You just won nationals!” by Kristle Lowell

The biggest relief from my depression came when I stopped lying about it. Depression was a secret I kept for too long. I think it was crushing me to not talk about it. I was denying a part of myself for so long. I felt an incredible relief when I won nationals and someone came up to me and said, “So, you think you still have depression?” My response was “Yes. Yes, I do."

Depression isn’t feeling sad when everything is going wrong. That’s normal. Depression is being sad when everything is going right.

When people see me, they see an athlete capable of flipping through the air and performing on a world stage. But, behind all the glitter and rhinestones is a pain that very few people see.

Jump

Part of my depression is suffering from crying spells. Everyone handles stress differently. Some listen to music. Others meditate. I cry.

The biggest relief from my depression came when I stopped lying about it. Depression was a secret I kept for too long. I think it was crushing me to not talk about it. I was denying a part of myself for so long. I felt an incredible relief when I won nationals and someone came up to me and said, “So, you think you still have depression?”

My response was “Yes. Yes, I do.”

It’s like someone being gay. Just because they win a medal doesn’t mean that changes. Relief came for me when I stopped getting mad at myself and started getting mad at how many people treat mental illness like it’s a choice.

If there is a God, and everything happens for a reason, I have to believe that God gave me depression for a reason. Maybe he gave me depression and athletic talent so that I could be the one to tell young athletes who are struggling that it’s okay.

I’ve found that, since coming out about my struggles with depression, the stigma can be overwhelming. Our society is so accepting of all races, religions, and LGBT. But, if you tell someone you struggle with depression, that same love and acceptance isn’t always there.

I feel that the public needs more education about those of us who suffer from depression. You don’t have to accept what were going through, but just don’t make it worse. At the end of the day, what I think about the most is the comments that people make in an attempt to help without realizing that they might be making someone’s depression worse.

“You have to have a reason for crying.”
“Stop acting this way.”
“You just have to think positively.”
“…but you seem so happy. You can’t have depression.”
“Choose to be happy.”
“…but you have nothing to be sad about in life.”
“It could be worse. You could have something physically wrong with you.”

Depression is not strep throat. You do not just beat it once and never have it again. It’s a daily struggle, and, for some, it can last a lifetime. It’s not an illness that people can see so it’s harder for people to understand. When someone breaks a bone and gets a cast, everyone runs over to sign their cast. When you tell someone that you have depression, they often run in the opposite direction. Some days, I wish there it were just a broken bone because then you would know that one day you will feel better. Telling someone not to be depressed is like telling a handicap person to just get up and walk.

Accepting that I suffer from depression is such a relief. I spent so long fighting it, and trying every therapy and every antidepressant. But, just being me has been more helpful then any treatment. I have accepted that I can do the sport that I love and brings me happiness and also suffer from depression. They are not mutually exclusive. For people who stigmatize depression, I have learned to just feel bad for them for not being accepting of someone just based on something completely out of that person’s control.

Headshot

I hope that anyone reading this knows that there is hope. People say, “Don’t let depression define you.” But, maybe, sometimes that is okay. Depression does define who I am and its become part of my identity. Society is so eager to fix us. To me, God gave me depression for a reason. Maybe it’s so I can feel more deeply or just really appreciate the few true moments of pure happiness. Not every person with depression needs to be fixed. They just need to be loved for who they are. I try to live my life with the idea that kindness costs you nothing and meanness can cost you everything. Kindness and understanding helped me more then any pill ever could. I have hope that, one day, depression will be as accepted as LGBT. Some days, I feel as if the stigma of depression hurts worse then actual depression. Lifting the stigma helps people to not feel ashamed to talk about it and get help. Being called crazy is never fun. It hurts to my core. Depression is never fun, but the most dangerous weapon depression carries is the culture of silence.

I look back in history at how many wonderful people have suffered from depression. Edgar Allen Poe suffered with depression and turned it into something beautiful. Touching peoples lives with the written word and the ability to describe emotions with words that makes the reader feel something. Abraham Lincoln suffered with depression as well. He was so attuned to the suffering around him that he put into motion the movement that ended slavery. I think people with depression know what it’s like to be in pain and want to help others around them to not feel that way. Robin Williams was such an incredible actor and made so many people happy with his comedy. I hope that I can use my depression to my advantage on day like these great people. It’s such a stigma to have depression but google “famous people in history with depression”. Where would we be without these people? People with depression have so much to offer and I am proud to be “coming out” as someone who suffers with depression. I have embraced the fact that, even though I never asked for this life, it’s the hand I have been dealt and I’m going to make the best of it.

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Celebrate Yourself

It takes a high level of trust to tell your therapist things you wouldn’t share with your best friend. How and when did that trust begin? Not with the initial greeting at the door. That could just as easily have been a ruse. While I don’t claim to own the full property rights to paranoia, it is in my diagnosis as a defining character; I’m going to find a flaw in the trust module until I don’t. Perhaps you’re the same. I believe that trust begins to form the more that we open up in session. It starts when you drop the mic on something as honest as you can muster and watch as your therapist responds to you with kindness and understanding rather than the awful cold shoulder received by so many. To be accepted for who we are by this one person — that’s the key. To feel understood. To be understood.

Chair BearMy tenth year of therapy sessions came and went without fanfare. I spent the day walking in the park. My therapist was on vacation. Truth be told, I missed sitting in the leatherette faux-Sixties orange comfy chair and talking about myself. For ten years it’s been all about me — my symptoms, my discoveries, my frustrations, loneliness and fears; the core of talk therapy. It’s not a dialogue, it’s not designed that way, but I like it when it feels like one. Our sessions have developed a style that recreates an interchange, which is good for me because I don’t have the natural social graces required to sit down for a chat and have the exchange be a two-way street. Schizophrenia makes short work of that. With all my neurons firing at once, I’m like a trip to the electronics store, all the televisions blaring away on separate channels, me keeping track of every one and reporting back to you as if one breath was all it took to convey the longest ever run-on sentence. Of course, that was before being medicated. My chems do a fine job of pulling me out of the TV store and into la chaise d’orange. One thought follows the next now, like polite little ducks in a row.

I have to ask myself: how did I wind up telling a complete stranger my entire life story, the nuanced details of my innermost thoughts — and why on earth would I do such a thing? What would compel a person to offer themselves up like that, knowing that people talk? Humans naturally communicate about everything, verbally and otherwise  —polka-dot shirts and lime green shoes, tribal tattoos, and placards on the Web. It takes a high level of trust to tell your therapist things you wouldn’t share with your best friend.

How and when did that trust begin? Not with the initial greeting at the door. That could just as easily have been a ruse. While I don’t claim to own the full property rights to paranoia, it is in my diagnosis as a defining character; I’m going to find a flaw in the trust module until I don’t. Perhaps you’re the same. I believe that trust begins to form the more that we open up in session. It starts when you drop the mic on something as honest as you can muster and watch as your therapist responds to you with kindness and understanding rather than the awful cold shoulder received by so many. To be accepted for who we are by this one person — that’s the key. To feel understood. To be understood.

It might be a professional trick of the trade; she might’ve learned some technique at a psychiatric symposium, or perhaps he’s been compelled to research your diagnosis further. Either way, they’re on your side. They know how best to support you because they’ve listened to you describe yourself on your terms often enough that they have your personal quirks committed to memory. Communication can become a two-way street, and isn’t that what we wanted from the get-go? Someone who understood what we were going through, where we were coming from, how confusing it all is, or how much it hurts? Something in our lives went missing, or perhaps was never there, some form of attachment, some reciprocal communication skills that never developed. Yet here’s this person you look forward to meeting weekly in the familiar safety of their office. It’s your private cocoon for the hour, a place to work out the kinks, talk out the hurt, forge a new approach to problems, or just be listened to by someone who’s come to know the real you because you let them in.

No other friend or family member knows you this well, and that’s your doing, you did that, you created this special exchange. Celebrate yourself, brave pilgrim! Filling in the blanks where medicine can’t go. Those chems are fine for the physical control of hormones, receptors, and neurological high jinks. This face-time with your therapist is the real world mini-model of how to integrate yourself back into the society that seems to linger on the outskirts of your imagination. Take it. It’s yours. A complete treatment package.

Enough can’t be said about balancing one’s chemistry — those pills are important. Equally important is the primary function of communication. Sharing your story with a professional listener is great practice for interfacing openly and honestly. Combining medicine and therapy can help you create a more complete version of yourself. Mental illness isn’t something nebulous; your brain is an organ that needs nurturing and maintenance, hence the need for meds and talking. 

And remember, it’s never just some random conversation… It’s your conversation, the one that makes you you

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Two Years Ago

Mental health disorders are truly hidden diseases at times because those of us with them become experts at placing them under a table where only a few know they exist. My daughter, during that time, was no different. We had known about the bullying taking place at her school, and had been advocates for her, but we had thought it was getting better when she stopped talking about it. We were wrong.

Two Years Ago July 28, 2016In December of 2014, as parents, our worst fear happened. I look back at that time now and see how the journey has brought so much to our lives. It brought pain, anger, fear, sadness, frustration, and happiness. A mixed bag of emotions we have valued equally. At that time, almost two years ago, our daughter went to her school counsellor and told her that she was broken. Broken is such a misleading word. For she was not truly broken physically, but her spirit was clouded and her mind was full of thoughts that she did not know how to deal with.

I have discussed her journey before on here, but today I wanted to go a bit deeper and write about where we have come. Back in December of 2014, my daughter shared a deep secret with her school counsellor. One that she could no longer hold in. All of the bullying had finally wore down her spirit and she wanted to leave this world. Her plan was to walk to the woods behind our home and hang herself from one of the tall trees. As a parent, that moment, and hearing those words, literally tore my insides apart. I felt shock. There was anger that I directed at myself. I was a registered nurse of over 16 years at the time and a survivor of the PTSD and major depression that a rape in my younger years brought. I should have known she was getting worse, right? Wrong. I recall now that when I was in the darkest moments of my depression and PTSD, before a suicide attempt would follow, that I was an expert at hiding behind a mask of smiles and “I’m okay”. Mental health disorders are truly hidden diseases at times because those of us with them become experts at placing them under a table where only a few know they exist. My daughter, during that time, was no different. We had known about the bullying taking place at her school, and had been advocates for her, but we had thought it was getting better when she stopped talking about it. We were wrong.

I can not describe in words the pain we felt at that time. I remember sitting on the floor of my daughter’s room holding onto her so tight as she screamed and begged me to let her go. She wanted the pain to end. She wanted kids to stop calling her every horrible thing in the book. She simply wanted the ability to be who she was, a nerdy girl like her mom. The pain was beyond words. However, here we are almost two years later and my daughter shines brighter than ever. How did we get here? Some of it was a year of counseling and medications, both of which she no longer utilizes, and some was the voices of my husband and I standing tall for her. We also owe a lot to amazing friends, some whom we have never met face to face, that wrote to our daughter and shared their stories.

When you have a child, or family member, battling a mental health issue you have to be their advocate. At times they may try to push you away and not allow you to do this, but be persistent and stand tall for them. During my time with PTSD and depression, I had a handful of family and friends who were my strongest advocates. They used their voices for me when my thoughts were distorted and my words silent. Listen and encourage conversation. Sometimes as a support person you may hear things that are painful, but listen carefully and be present. If your loved one tries to push you away be strong and realize it is the disease and not them. Be respectful of their space, but do not walk away no matter how hard they push. Hold your judgement. Every conversation I have with my daughter I let her know that I am there to listen and not judge. I explain to her I will only speak loudly if I feel something she is discussing could be a danger to her or someone else, but in “mom space” she is allowed to be who she is and I am not going to judge. She knows I may question things I do not understand, but I will not cloud her words.

Being a parent is the toughest task a person will ever take on. There will be times you question whether you are doing a good enough job. Two years ago I questioned this a lot. Recently, my daughter said something to me that has stuck with me. She said “Mom, thanks for being there for me. Out of all the moms in the world, you are the perfect one for me.” I realized then that, perhaps compared to other parents, I am not top level. But, for my kids, I am great just the way I am. I am the mom that they need and I will support them always. If you have a child battling a mental health illness remember you are the perfect parent for them. Love them and be there. I cannot promise it will be easy – in fact, it will be painful – but you are the one they need.

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Part II - More Mental Illness Revealed What's Going On With Howie

My parents have since told me that, at that time, Howie was telling them both things that sounded fearful to the point of paranoia, and that he was frequently agitated and depressed. I remember sitting with my parents at the small, round, cluttered dining room table and asking them, "What's going on with Howie?" They told me that they honestly weren't sure, but knew that he was suffering inside emotionally. They told me that they had made an appointment for Howie to be seen by a child and adolescent psychiatrist. I remember them looking perplexed, exhausted, and seemingly helpless to what was going on. It was exactly how I felt.

I grew up with a brother by the name of Howard (Howie) Lee Klein, who was two years and two months older than me. He was also my only sibling to our natural parents, Arnold and Betty. Being so close in age, Howie and I shared many experiences and slept in a bunk bed in the same bedroom throughout our youth. Howie and I played vigorously in our neighborhood, an apartment complex called Pomonoc in Flushing, a community in Queens, N.Y. It was both clean and safe back in the 60s. As we grew older, we went further into our community going to our local city parks and the movie theater next door to a White Castle!! Yummm! $0.12 each – That’s eight for one dollar!

Howie loved me and was as protective as you’d expect from a big brother! We had a lot in common as we both loved sports and competitive things, as long as they were played fairly and within the rules of the game. We also both loved listening to music, especially the AM radio, which I believe had seven or eight stations at that point. There was no FM radio yet. We heard and loved mostly Motown and rock ‘n roll.

In 1972, our parents found a suburban home in a town called Rockaway in Morris County, a fairly rural part of northwest New Jersey. They wanted to give us more room to grow. The community surrounds a beautiful lake, White Meadow Lake, which has beaches and recreational activities like handball and basketball available.

**Note: I refer to my brother in the past tense throughout my blog as he is no longer with us. He passed away in 1999 at the age of 40 from a brain tumor. I’ll talk more about this at a later time.

When I was around 12 years old, and Howie 14, I started to notice my brother acting strange. I started to really question some of my brother’s statements and behaviors because they began to take on a very peculiar and bizarre feeling and tone. At the time, this both confused and scared me. I kept telling myself that he was fine at his Bar Mitzvah just the year before, and wondered if he was just having a harder time with the move than I was. I was still a young adolescent, and, honestly, didn’t know what to make of it.

Things progressively got worse for Howie. He began walking around the house muttering aloud different words or phrases like part of a conversation without any context at all. I asked him what he was saying, but he often didn’t answer me. I began to realize that he was actually communicating with himself, and he couldn’t explain this to me. He had a distracted and disengaged look about him that was most evident in his eyes. He started having trouble in junior high school even though I knew he was incredibly bright. He began to isolate himself, and stopped attending Boy Scout meetings, which was something our whole family had been involved with and loved for many years since cub scouting. He also began to be extremely moody. He seemed to become easily depressed and angry. My parents have since told me that, at that time, Howie was telling them both things that sounded fearful to the point of paranoia, and that he was frequently agitated and depressed. I remember sitting with my parents at the small, round, cluttered dining room table and asking them, “What’s going on with Howie?” They told me that they honestly weren’t sure, but knew that he was suffering inside emotionally. They told me that they had made an appointment for Howie to be seen by a child and adolescent psychiatrist. I remember them looking perplexed, exhausted, and seemingly helpless to what was going on. It was exactly how I felt.

We went to family therapy due to the numerous arguments and the tension occurring in our home. At that time, there were no obvious signs that something larger was seriously looming. Howie was first diagnosed with having a mental illness called Schizophrenia back in 1974 when he was about 15 years old. At that point, he had trouble maintaining himself at Morris Hills High School and had stopped attending classes. He told the doctor that he had begun hearing voices in his head, and that they were shouting at him and saying negative things. Howie was drawn to reading a lot of religious and philosophical books, and was reading far beyond his grade level. It should be noted that Howie had later tested out at an overall IQ of over 150 during psychological evaluations. The psychiatrist prescribed a variety of psychiatric medications for Howie to help clear his thinking, positively effect his mood, and let him rest more and sleep through the night. He agreed, at least initially, to this plan and began to take these prescribed medications although he did state that he didn’t like how they made him feel. He was sleeping better, but constantly said that his stomach was upset and that his muscles felt tight. Over the course of a few years, while I was now attending that same high school, Howie began to go on and off his medications due to the side effects. I was trying to maintain my grades and be an athlete. I was on a variety of school teams, but mainly focused my energy on cross country running and track and field. When he was off his meds, he would say that he believed that he didn’t really think he had a mental illness, that the medications were causing him harm, and began to question whether the medications were what was causing him to feel mentally ill in the first place. The family would then see Howie’s psychotic symptoms re-emerge rather quickly. He would become erratic and angry with all of us, accusing us and blaming us of wrongdoings At times, he broke furniture and punched holes in some of our interior house walls. One time, he severely threatened our father and chased him around the house with a knife. Thankfully, our father was faster than Howie and escaped harm. On that day, Howie did not perceive our dad as his real father. His illness had caused him to distort his belief system, and, at that point, he believed that our father had been replaced with a duplicate impostor who wished him harm in some fashion.

Howie also battled with depression during these years, and, all too frequently, was suicidal. This led to a number of psychiatric hospitalizations throughout his adolescent and young adult years. To my knowledge, Howie attempted to take his life three times. While unsuccessful, these were serious attempts and not cries for attention. He told us that it was too painful to live with the intrusive voices and constantly being told that he didn’t deserve any happiness or success. I couldn’t understand then that these voices were a direct distortion due to his mental illness of his own low self-esteem and severe insecurities about his capacity to achieve in the world. Our parents needed to have Howie hospitalized numerous times in short-term stay psychiatric facilities that ranged from three days to a few months in an ongoing effort to stabilize him in these moments of extreme distortions and suicidal thinking. This was especially true when he elected to stop taking his medications, but, also, when what he was taking was ineffective for the symptoms he was experiencing at that point.

The above description of how my brother’s mental illness was impacting him is factual and certainly, without any malice or intent, created a major shift in the normalcy of our family routines and lifestyle. However, it doesn’t begin to touch on the emotional and psychological impact that this had on my parents and myself. We certainly each had been jarred and shaken quite a bit through this whole process. However, we each had our different reactions and we each had our relations with Howie. For years, I shared my description of what is was like, for me personally, having a family member with a severe mental illness with my patients at Napa State Hospital. It was like a psychological atom bomb went off in the middle of the living room and sent each of us flying with emotional shrapnel in different directions!!

Again, let me clear – Howie did not intend to cause ANY turmoil, heartache, or property damage for the family. Nor did he mean to be draining of time, energy, and money from all who loved him. As do most major medical and / or psychiatric issues within a family, that reality just happened naturally. It is fairly normal and common. However, the self-harm and the potential violence that is expressed outwardly is quite unique to mental illnesses. We were scared at times for both him and ourselves. We were confused most of the time. We were constantly trying to reason and help Howie understand why certain choices were in his best interest. I learned early in my life that you can’t force someone to take a prescribed medication even if it’s for their own good and even if not taking it makes NO SENSE whatsoever. This is why this becomes involuntary once placed on a psychiatric hold in a hospital. Because, at that point, it becomes clear that the judgment of the person is impaired and they can’t choose for their own good in those moments. Once clear, there is room and time for psycho-education to occur and to help those willing and interested to really understand how their medications puts them back in control over their moods and thoughts.

We all loved Howie very much, wanted him to take better care of himself, and truly wanted him to be happy and safe overall. Now I can look back at all he went through during what was a fairly antiquated time in the late 70s with respect to the medications available to him. There have been tremendous improvements to the psychiatric medications that exist today, especially with regards to the treatment of psychosis. He also had spent a great deal of time in psychiatric hospitals that offered little to no education and treatment. During my visits with my parents, I don’t remember any psycho-educational classes being taught to help Howie build a better understanding and begin to trust his psychiatrist in hopes that it could improve his medication compliance rate and stability. Today, this readily exists and adults with similar illnesses are being empowered and educated each and every day. It is being presented in both outpatient and inpatient settings by psychiatric treatment teams so that those struggling with a mental illness, and their loved ones, are no longer left in the dark. Families are actually connected as an important support to the client / patient via the treatment team and toward their process of their eventual recovery!!

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Taboo

It was hard to accept my diagnosis. It’s been hard to accept recovery. This is something no one can prepare you for; you have to find out on your own. No one talks about it. The subject is virtually taboo. So I’m turning myself over to my community; we have a stake in the silver linings department. It may be a little early to put out the welcome mat, but homesick or not, I’m already home.

monkeyIt’s been six months since my most recent stay at the mental hospital, six months since I started my daily regimen of antipsychotic medications, and six months since I faced down suicide. For all the work that I’d put into managing my illness, death seemed the perfect solution to having to deal with schizophrenia. I’d begun my plan of starvation months before that wintery afternoon, aided by command voices telling me to end my life. I tried to follow their orders, but I’d found a better solution when I chose to pick up the phone and dial a friend.

Every morning for the past few weeks, I struggle to wake up, feeling the pull of the bed, those telltale signs of depression settling in before I even come to consciousness. I hate that, the drug-sleep and reentry. I fight the covers to find myself, but the me I discover is unwilling to face another day. Still, by some miracle, I get out of bed, get dressed, and pop my chems before I sit down to write. I open the windows when my instincts tell me to keep the blinds shut and block out the world. Then the meds kick in and I’m suddenly transported to Meh City where I can only focus on one thing at a time. Better living through chemistry, I suppose, but am I really living in the truest sense of the word? I can’t tell.

Where did I go? What happened to me? One day I was starving myself, giving in fully to my eating disorder as a slow burn path towards death. On my way home I contemplated my butcher’s block full of knives. Six hours later I was in restraints and wondering if this was punishment for murdering my dreams. Another five hours and I was drugged to the gills, swimming in the myopia of a holding cell bed, awaiting transfer to the psych unit. Now, six months later, as I try to adjust to life on medication, I still ask those questions of where did I go and what’s happened to me?

I didn’t fumble the words. They spilled right out like I was reading a script. “I miss the Old Me,” I told my therapist. “I don’t know who the New Me is or what he’s supposed to be doing.” This so-called adjustment period has gone on for half a year and I still have no idea what’s in store other than the zombie-like interpretation of daily life, or un-life as the reanimated might say. Where I used to have a dozen thoughts or more all fighting for prime time in my mouth, watching words tumble out like refrigerator poetry, I can now string a complete thought together, much to the relief of the people around me. Still, I miss the process of an unhinged mind. Difficult or not, it was the life I knew before medication.

I was animated and spontaneous then, entertaining, clever. My friends report a sense of wisdom and calm in the New Me, which they say they suspected was always there, hidden beneath the symptoms. My therapist tells me that she feels like she has more room to speak when we’re in conversation because I’m a better listener medicated. I sense these things to be true, and while I appreciate the equilibrium, I feel the loss of my hyper self, the creativity, the joie de vivre. Not that it wasn’t frustrating at times, but I miss the spark.

I want to be happy and fulfilled as per the promise of a medicated life, but to be honest, I miss my former self, or at least some aspects of the life I’ve left behind. I understand that it’s a matter of time to find myself within these chemical walls, but so far, even with the voices at a minimum, delusions at an all-time low, and the random hallucinations at bay, I feel less than Optimum Henry based on the past, and that’s difficult to reconcile.

If there are adjustments to be made they’ll come in due time, according to my psychiatrist’s guidance and expertise. In the meantime, I wrestle with accepting that the Old Me is gone and the New Me is here to stay. I need to meet myself on these terms. To survive, I need faith. To thrive, I need support. I need to advocate for myself while I reconstruct my life, this new version of a life, the Medicated Me.

It was hard to accept my diagnosis. It’s been hard to accept recovery. This is something no one can prepare you for; you have to find out on your own. No one talks about it. The subject is virtually taboo. So I’m turning myself over to my community; we have a stake in the silver linings department. It may be a little early to put out the welcome mat, but homesick or not, I’m already home.

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More Than A Best Friend

A psychiatric service dog is trained to specifically meet the needs of the handler by such things as: identifying what’s real; creating a personal space barrier; calming anxiety; blocking an impulsive, panic driven movement of darting into oncoming traffic; guiding back to safety. There are several wonderful, dedicated organizations that provide the training, resources and funding to connect service dogs with those in need.

DominoOur family dog, Domino came into our lives when my girls were 6, 8 and 10 years old. Little did we know just how much this little black and white fluff ball would make our lives richer, happier, safer and more complete. We chose a cockapoo (cocker spaniel/poodle mix) because they are known for their playful, intelligent and affectionate disposition. And, they are hypoallergenic. What we got was a dog who redefined the meaning of the word ‘tolerant’. Sibling rivalry guaranteed daily (or sometimes hourly) competitions over who got to cuddle, play, snuggle, hold or sleep with Domino. Curious little fingers poked, prodded and inspected our puppy’s ears, nose, paws, nostrils and every one of his spots that inspired his name. Creativity meant that Domino was subjected to experiences I never could have imagined. Case in point: I came home one day to find Domino complacently dressed in a two-piece bathing suit with matching painted nails. Another time, the girls used his floppy ears to try out new ‘hairstyles’ such as pigtails, ponytails and assorted up-do’s.

Beyond tolerance, Domino’s intuition is so high and his loyalty so deep that he quickly became the alpha source of comfort and soothing. Mental illness, in the form of anxiety, depression, mania and frequent meltdowns, had already claimed a stronghold on our family dynamic before Domino’s arrival. Each day was marked with apprehension, stress and turmoil making it more and more difficult to create some semblance of normalcy. Domino was often our beacon of predictability and calm, infusing unconditional love in a soft and instinctive way. When all other efforts failed, our four-legged friend worked his magic to quell a panic attack, diffuse a rage or shine hope into dark thoughts of despair.

It’s no secret that animals have an innate ability to provide comfort. Many years ago I attended a national DBSA (Depression and Bipolar Support Alliance) conference and was struck by the number, and variety, of emotional support animals (ESA) in attendance with their owners. In addition to dogs there were cats, birds and even a guinea pig. While these animals do not perform a specific task that alleviates an aspect of their handler’s disability, they clearly serve a significant role for their owners. Even though he’s never had any formal training, our dear Domino is a proud, badge carrying, vest wearing (on occasion) certified emotional support animal. Basically that means that he can go places were dogs would normally not be allowed (e.g. airports, restaurants and other public places) and which could be anxiety provoking for his handler. For our family, his presence at home has been, and still is, the greatest benefit.

 

  • A dear friend of mine, and dog owner many times over, has been on a quest for a psychiatric service dog for her young adult son. ‘Josh’ has auditory and visual hallucinations that make it difficult to distinguish between reality and symptoms of his illness. Like individuals with PTSD, certain situations can be extremely triggering and cause disassociations. A psychiatric service dog is trained to specifically meet the needs of the handler by such things as: identifying what’s real; creating a personal space barrier; calming anxiety; blocking an impulsive, panic driven movement of darting into oncoming traffic; guiding back to safety.

 

There are several wonderful, dedicated organizations that provide the training, resources and funding to connect service dogs with those in need. PAWS Training Centers and Puppies Behind Bars are examples of organizations committed to making a difference. However, most are limited in the types of disabilities they support or are targeted to one specifically. There are also several websites such as Psychiatric Service Dog Partners that provide information on selecting a particular type of dog, finding a trainer and determining the specific skills needed to support the handler.

The problem is, the lion’s share of the burden falls on the individual in need. There is no question that veterans, individuals with PTSD or TBI (traumatic brain injury) or diagnosed with autism are acutely in need of these services. So are individuals with schizophrenia, schizoaffective disorder, bipolar disorder and other severe mental illnesses. Why should the circumstances of a person’s disability determine their access to services? Whether genetics, an IED (improvised explosive device) or trauma from domestic violence, the needs are still essentially the same. For that matter, why should the disability itself determine access to services? Diabetes, epilepsy, spinal cord injury and schizophrenia all result in impairments that limit functionality. Why should one disability trump another when it comes to access to care?

I am not in any way suggesting that the programs, charities and organizations that exist are to blame or are in any way at fault. Advocacy for specific illnesses promotes awareness, education and serves to directly support those in need. Trying to create a one size fits all environment is not the answer. However, we need to fill the gaps. We need to make available those resources that are evidence based and effective when segments of a disabled population are unable to access what others of that population receive.

I don’t have the solution. I wish I did. But I do know from experience that talking about a problem, raising awareness, challenging all of us to consider ways to improve the situation, is a huge step in the right direction. The good news is that resources exist now that didn’t 10 or 20 years ago. Now we need to connect those resources with the individuals who are still in need.

 

 

 

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Nothing Has Changed But Everything is Different by Davs

Borderline Personality Disorder is not blatantly obvious, if you do not know the hallmarks to look for. It’s a lot like bipolar, not in all the symptoms, but in the stigmas. People generally understand anxiety and rarely fault you for it. PTSD is widely talked about and almost never seen as a personal fail. Agoraphobia, is basically the need to isolate, or fear of public spaces, again, not seen as a personal fail. Borderline though, like bipolar, comes with a lot of assumption and judgment. They are both often misunderstood and treated as a personality flaw.

Nothing _0542Three weeks after my diagnosis of Borderline Personality Disorder (BPD) I sit alone in my studio apartment hovering my finger over my keyboard. My screen set to Google search. I’m hesitant to type, terrified of learning what behaviors I display that are the result of this new, to me, mental illness.

I was diagnosed with bipolar in 1993. I was so young that I never had a grieving period for the person I thought I was pre-illness, I had not yet gotten to the point of defining myself. Throughout the years, I’ve lived my life through the lens of someone who is bipolar. It is not who I am, but a distinctly undeniable part of what makes me me. It never scared me because it was always there.

I struggle with Agoraphobia, I have PTSD, and Generalized Anxiety Disorder. But this (BPD) feels different. All of the mentioned illnesses I’ve acquired were undeniable and obvious when they struck. When I became ill with each new disorder I still knew who I was, I still understood my own triggers, ticks, and quirks. I was still there, sometimes barely recognizable, but I never lost hold of this basic understanding I’ve formed about who I am as a unique, individual person.

Borderline Personality Disorder is not blatantly obvious, if you do not know the hallmarks to look for. It’s a lot like bipolar, not in all the symptoms, but in the stigmas. People generally understand anxiety and rarely fault you for it. PTSD is widely talked about and almost never seen as a personal fail. Agoraphobia, is basically the need to isolate, or fear of public spaces, again, not seen as a personal fail. Borderline though, like bipolar, comes with a lot of assumption and judgment. They are both often misunderstood and treated as a personality flaw.

This new diagnosis makes me feel like I don’t know anymore, who I am. I learned for the first time in over twenty years that there are behaviors I show that are the result of an illness that I know nothing about. I could not stop crying when I got home from seeing my therapist who confirmed what my boyfriend had suspected and even researched for six months prior. He kept saying, in hopes to comfort me “nothing has changed, you’re still the same person you were before the diagnosis” but, what I could not put into words was that, maybe nothing has changed, but everything is different. I may still be the person I was five, ten, even fifteen years ago, but how I think of myself has shifted. I feel upside down, as though the grasp I thought I had, of my own identity, was false. As if I have to relearn what and why I act the way I do, and learn new ways to cope, deal, or curb actions I thought were under my control, or in the very least within my understanding.

I reached out to someone I trust, who in an attempt to comfort me advised that I pay no attention to the new diagnosis. As if ignoring it would somehow make everything ok. I would love to ignore it, but this is not something I can unlearn. Now that it is confirmed, that I have this illness, it is my responsibility to understand it, because how else can I get better or learn to navigate myself if I deny the root of my behaviors?

I don’t know. I like to wrap up my writings like a present, you untie the bow, open the box, and have some sort of satisfactory ending like a shiny new toy. But today, it’s like I didn’t have time to buy wrapping paper. So here it is, in a paper bag, the price tag still hanging off the side. I don’t have an easy way to end this post because I am still grieving for a perception of myself that is now gone. Maybe next time I will have had a revelation, good news, a shiny new toy. But for now all I have to give is the truth, and it isn’t pretty.

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Cause Célèbre

I want to belong to a culture that accepts a person living with a mental illness for who they are rather than opting for stereotypes. Those hackneyed institutions need to be challenged, and who better to do that than us, the people with the diagnoses? We have a voice. Let’s use it.

foto montage crowd 2As of this entry, I have been blogging for Bring Change 2 Mind for three years, and I couldn’t be happier about that. It is an honor to be sharing my story with the readers and subscribers who regularly fight the stigma and discrimination surrounding mental illness. That I am in the position to contribute to the stream of life in a manner that befits my abilities is something that I am grateful for.

My current circumstances are no cakewalk. My finances are dwindling and my housing situation is dubious. Living with schizophrenia means that having a traditional nine-to-five job is not likely for me. Since my diagnosis in 2010 I have had to leave that world, not because I can’t work, per se, but because the unpredictability of my disorder preempts the kind of employment that others often take for granted. Even medicated I have had to accept that the symptoms which define my illness can, and occasionally do, find their way to the surface. Just last week I heard disembodied voices while at a dinner party for a friend’s graduation. In an environment like that I am typically anxious, and a recent side effect of my antipsychotic medication is an increase in anxiety. Little surprises, like hearing voices when I haven’t for a while, can throw me off balance. I may have trouble with social awkwardness, but I’m learning to navigate that with the help of additional meds.

For three years I’ve written about schizophrenia with a focus on raising awareness about the disorder, especially for people unfamiliar with it. I’ve wanted to put a face on my illness which makes it more approachable. I have challenged conventional images of schizophrenia in order to render the offhand labeling moot. I’ve dedicated certain blogs to various symptoms and the ups and downs of learning what’s happening to me, all the while keeping an eye on staying current with my readers so as to make an honest connection, one that informs and draws a sense of unity and comfort.

When I’ve had to work through the labyrinth of the social and health services departments, I’ve brought you along with me. When I’ve been maligned or mocked, I’ve shared that with you, too. When self-stigma has dug its way into my day and undermined my best intentions, I’ve been transparent about that for the benefit of anyone going through something similar. When I gain insights into my disorder, I share them so that caregivers and family members can find hope where there might have been confusion or frustration. I want to belong to a culture that accepts a person living with a mental illness for who they are rather than opting for stereotypes. Those hackneyed institutions need to be challenged, and who better to do that than us, the people with the diagnoses? We have a voice. Let’s use it.

I still experience examples of stigma every day. Recently, while waiting at a crosswalk on the way to my therapy appointment, I saw a woman across the street shouting, “Get out of my way,” seemingly to anyone around her. Or perhaps to no one. It wasn’t clear. She had an oversized bag of popcorn which she gestured with in between outbursts. She was wearing an ill- fitting pink track suit with Sanrio characters on it, but looked “normal” in all other respects.

Waiting next to me were two young women who, after witnessing the yeller, spun their fingers at their temples and sang in unison a two syllable word they’d broken into thirds for comic effect: “Cuh-RAY-zee!” after which they broke into peals of laughter while pointing at the woman. To some that might not seem like a display of prejudicial behavior, but substitute a racial or gender biased slur and think again. Could they get away with it? Would they even consider it? I’d be inclined to say no, they would not—and that’s just a minor example of what we deal with in the everyday world of dismissiveness: the perpetuation of derogatory profiling for puerile entertainment.

I did not, however, confront the two girls, nor did I shame them for their unkindness. There’s no point in that. Instead, I chose to write about it here, to share a detail from daily life with a wider audience. In truth, I have been that person, yelling at the air when my symptoms decided it was time to go big. It’s not “acting out”—there’s no choice in the matter—nor is it necessarily controllable in the moment. It’s an immediate response to a subjective reality that doesn’t line up with the status quo. But it certainly doesn’t warrant being called out with cruelty; the self-stigma later is humiliation enough. Trying to explain it to one’s therapist, best friend, family member, or psychiatrist hurts more than the jeering of two jackals at a crosswalk.

The way I see it, it’s our duty to one another to share our stories in order to create more and stronger solidarity, and to help relieve some of the pain that hurt feelings can bring. This blog has afforded me that option, and through it I have found my voice, the real voice of me, not the ones that tell me to harm myself, or the ones tumbling out of rude people’s mouths. I recognize that not everyone is so fortunate, and that writing this blog is a privilege, but I’m also aware that there are many ways in which each of us can let the world know who we are and how we feel. We aren’t going away just because they’re embarrassed to have us around in our eccentric clothing, shouting at invisible friends.

We are survivors. We deal with some pretty heavy stuff. And we come out on top in ways that the public may not understand or appreciate. We have to acknowledge the hard work. We want recognition for our accomplishments, great or small. Sometimes it’s just getting out of bed, or making a successful effort in therapy. Other times it’s getting the shopping done. One of us earns a degree or lands a new job. Someone has a gallery showing, while another feeds the dog. Real lives lived because we matter. Positive results that we need to highlight. That’s true pride. That’s us.

We’re not in this alone. It’s our job to learn everything we can about our diagnoses, maintain our mental health, and then offer support to one another. From there we can join together through our shared stories, create an ongoing conversation, and build a saner scene for ourselves in the immediate future, and for coming generations as well. Our combined experience, strength, and hope can help bring change to mind, and isn’t that the point? Call me crazy, but I’m a believer. We’re a strong community. Anything is possible.

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Part I - My Introduction to Mental Illness

When I was all of about 7 or 8 years old, my mother decided that she wanted my two-year older brother, Howie, and I to finally meet her older sister, Phoebe, who had lived for years in upstate New York. She also told us that Phoebe had some health issues. Bless my mom's heart, but based on cultural, familial, and generational issues, she did not forewarn my brother and I that her sister actually lived in a sanitarium.

I was born into a normal, neurotic semi-Orthodox Jewish family in Brooklyn in 1961 but was primarily raised in the community of Flushing, Queens (lived in two of the five boroughs for those who are unfamiliar with New York City).  When I was all of about 7 or 8 years old, my mother decided that she wanted my two-year older brother, Howie,  and I to finally meet her older sister, Phoebe, who had lived for years in upstate New York.  She also told us that Phoebe had some health issues.  Bless my mom’s heart,  but based on cultural, familial, and generational issues, she did not forewarn my brother and I that her sister actually lived in a sanitarium. Not that we would have understood that either.  Howie and I were clueless about what that meant but we knew we were going on a long car-ride into the countryside.    That meant trees as far as the eye can see, outside of the brick, mortar, and cement contained in all of all of the apartment buildings, businesses, schools, and playgrounds in Queens and in NYC.  We were raptured by the gorgeous scenery on the drive and the Motown music that was blaring from one of the five stations on the AM dial (the only frequency around at that point!).  After a few hours of the Temptations, Jackson 5, and some old-style driving name games, we arrived at the sanitarium.  It was a large building on beautifully well-cared for grounds.

Our mother stops us before getting out of the car and tells us both that her sister has been having some “emotional problems” of late. I assumed this was to help us understand a little better why she was living there.  My mother signed us all in and then we were escorted to a bedroom where a woman was in a bed but was sitting up.  Howie and I entered to greet our Aunt Phoebe and say a big hello.  At that very moment, this woman, our aunt whom we had never met, began yelling at the two of us.  She was screaming obscenities and yelling, “Get the hell out of my room.  Who are you? I don’t know you!!”  And then she proceeded to hurl packs of cigarettes at us to emphasize the point that she REALLY wanted to be left alone!

We did not argue with her and high-tailed it out of there dodging and avoiding getting hit by the packs of cigarettes being thrown at our heads.  Our mom was beside herself and saddened by the whole experience, as she had hoped for a much more pleasant connection for her and us.  She had been right behind us the whole way and had watched this entire scene unfold.  We all went out into the hallway, with my mom quite teary-eyed.  While catching our breath as we were still in shock and disbelief what had just occurred, we asked our mom, what the hell was wrong with her sister?

I distinctly remember my mother quietly and sadly begin to tell us that her sister has an illness called Manic Depression, and that she had struggled with it since her teen years.  My mom didn’t have a lot more to share or explain that day, other than the fact that Aunt Phoebe had very little control over her emotions, and had lots of angry outbursts as a girl which had continued on as she headed toward becoming a young woman.  My mother was able to go back in and visit for a while with her sister but Howie and I went outside on the grounds to play.  We had experienced enough for the day.

We left that day for home, all saddened by what had occurred.  I learned that my mom wished that her sister could just “be better”, want to take her medications on her own, and be able to enjoy a life outside of an institutional setting.  I gained a great deal of empathy for my mom and felt a profound sense of sadness in getting a glimpse into the plight and impact that a serious mental illness can have on a person.  From that day forward, my view of life  had been truly changed.  Little could I know, at that time,  as to how impactful mental illness would eventually be in my personal life and that it would lead me toward my present career.

(Part One)

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We're Partnering With The Mighty!

We're thrilled to announce a new partnership that will bring BC2M'S resources in front of The Mighty's wide-reaching readership. BC2M will now have a growing home page on The Mighty and appear on many stories on the site.

Mental Health | The Mighty Partnership | Bring Change 2 Mind

We’re thrilled to announce a new partnership that will bring BC2M’S resources in front of The Mighty‘s wide-reaching readership. BC2M will now have a growing home page on The Mighty and appear on many stories on the site.

The Mighty is a story-based health community focused on improving the lives of people facing disease, disorder, mental illness, and disability. More than half of Americans are facing serious health conditions or medical issues. They want more than information. They want to be inspired. The Mighty publishes real stories about real people facing real challenges.

We’re dedicated to helping people living with mental health issues. With this partnership, we’ll be able to help even more people.

We encourage you to submit a story to The Mighty and make your voice heard. 

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Go Ask Alice

On the other hand, I can focus like never before. All of my ducks are not only in a row, they’re driving the bus and, for once, I’m not under it. The disordered mind has had a makeover. Complete sentences form in my head, lined up one after the other in a nice, sequential fashion, just like real people only more so. Train of thought not derailed? Unheard of until now. Full steam ahead. And listening? Following along? Gotcha covered. I’m all ears. Making me spectacular date material. Nobody “Friend Zones” a good listener.

collageOne pill helps keep depression at bay. Another keeps the anxiety in check. The third, and most important pill, keeps my delusional thinking at a minimum, keeps the voices I hear at an all-time low, and helps with the general upkeep of life. So we’re all good, right? Had a checkup this morning and the health is pretty much stellar, save for the fourteen pounds I’ve put on since I was in the hospital five months ago. Due to my eating disorder, I had room to spare. Besides, it’s summer now and I can get out for more exercise. I can drop a few or tone up, no big deal. But what about the rest of the picture?

Well, first thing besides the weight gain is the risk of developing diabetes, hence the doctor visit and blood work. That’s a very real concern when using these medications, and one I’m not taking lightly. There’s the shortness of breath from the lowered blood pressure, but I can work with that. I’m a former runner and a current power-walker, so I can log in a few miles and gradually build up my lung capacity. Being sedated to the degree that I am does not preclude a regimen of healthy habits.

It’s the little things that start to bother me, like increased anxiety due to the anti-psychotic, and the loss of libido, which would be even more of a problem if I had a romantic interest in my life. I guess it’s best that I don’t for now. Leaves more time to focus on other things like writing, diet, and exercise.

There’s the shaky hands syndrome, which is always interesting. My signature alternates between its usual artistic scrawl and something a toddler might have scribbled. The opposite hand’s worse—I pick up a glass and start to quiver to the point where I begin to spill before I get the rim to my lips, forcing me to hold it in both hands like a Tommy Tippy mug. [Note to self: when the mythical date actually happens, pick up your cup with the stabler hand…it’ll improve your chances of rekindling that dormant libido.] Of course there’s the drooling, which is new, and only at night, but ask anyone taking any form of a benzo and they’ll give that all-knowing nod. Yep. Drooling on the pillow. Or sometimes when there’s food. Open the mouth, excess saliva. Very attractive.

Tossing and turning? Don’t worry about it. You’ll sleep until noon and the covers will weigh a metric ton. Stiff muscles? Well, there’s a pill to counter that, but, of course, it comes with its own side effects. Lots of trips to the bathroom. Better cancel that wildlife expedition. Or just stop drinking. Put that glass of water back where you found it.

On the other hand, I can focus like never before. All of my ducks are not only in a row, they’re driving the bus and, for once, I’m not under it. The disordered mind has had a makeover. Complete sentences form in my head, lined up one after the other in a nice, sequential fashion, just like real people only more so. Train of thought not derailed? Unheard of until now. Full steam ahead. And listening? Following along? Gotcha covered. I’m all ears. Making me spectacular date material. Nobody “Friend Zones” a good listener. Unless drooling and frequent potty stops are deal breakers.

So, yeah—not in love with the side effects smorgasbord to date, but not complaining, either. Just poking fun at myself while I learn to solve problems, keeping a healthy sense of humor in place when I’m anxious.

The positive effects far outweigh the negative ones. I’m stable for the first time in my life, and that is remarkable. Why I ever resisted medication is beyond me, save for my innate paranoia and the symptoms of schizophrenia which directed me elsewhere in my quest for balance.

My friends with their own mental health diagnoses talk about many of the same side effects, but agree that their lives were more difficult without the medications, which is comforting to know being a relative newbie. Not to the illness, but to the inclusion of medicine in my daily regimen.

My only concerns today, besides those founded in medical science, are more of the emotional variety. How am I perceived now? How does the outside world see me? I’m not shouting at traffic or talking to myself in the cereal aisle, so I’m giving them nothing to stigmatize, speaking from appearances only. It’s when the conversation comes around to my diagnosis that things might get just as sticky as before. I haven’t tested those waters much. I want to work with my psychiatrist and get that clean bill of health before I venture into the scary territory of social interaction, the one place where I least excel. Because, medicated or not, my challenge is to get past my own self-stigma and present the best me that I can be. This new guy with the shaky hands and the welcome smile. Love me, love my unicorn.

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Walking the Walk and Talking the Talk

What we say and how we say it isn’t just about talking in the safety of our friends who agree with us. It’s about putting ourselves out there when the time is right, when the situation will benefit from it. So go eat something healthy, take a nice walk, and keep those conversations alive. The future of change is in our hands.

talk talkImagine talking freely, having an open conversation about your diagnosis, your medications, the side effects, your therapist, psychiatrist, or counselor. Sounds like a dream come true, right? I experienced that today on the 2016 NAMI Walk here in my hometown. Not only did I have those conversations with my friends, two of whom live with bipolar disorder, but people all around us were sharing conversations like ours for the hour that we walked the three mile loop. I never felt awkward. In fact, it was liberating, especially to hear complete strangers divulging what would normally be considered private information in polite society. The only downside that I could detect was later, in perspective: why can’t those discussions be held outside of the advocacy and charity functions? Our culture is willing to discuss other medical problems without shame. Granted, any conversation thrives when it’s taking place amongst a group of like-minded individuals, but wouldn’t it be healthier for everyone all around if we felt free to open up about our disorders and illnesses without feeling guilty or uncomfortable? I think it’s entirely possible that the day will come when mental health issues aren’t having to fight for space in the conversation. We are moving forward, it’s true, but we’re far from being a stigma free country.

When I hear a person say that we’re being too sensitive I wonder if that’s just an excuse for their being derisive. When they say that we’re looking too hard for something to complain about, maybe what’s happening is that they’re clueless about the stigma surrounding mental illness. Or maybe they’re afraid that it’s “catching”. They will defend their “right” to dismiss the mentally ill community and continue to do so unless we rally together as a segment of the population who deserve to be heard. That’s on us. It’s one thing to talk about being stigma-free; it’s another to face the bullies and the ill-informed. Ignorance is a challenging foe.

When I speak about mental health, I like to be grounded, meaning that I need to make sure that I’m working my program of medication and talk therapy, keeping in touch with my psychiatrist and PCP, and generally tending to my mental health without getting hung up on the downsides, of which there are plenty, as we all know. Side-effects from meds and difficult topics in therapy aren’t likely talking points that come up when someone’s discussing their day-to-day physical wellness and whole person approach; that’s just not an issue when you’re being told to eat a balanced diet and get plenty of fresh air and exercise. Why should it be any different when it comes to the health of our minds? Why is stigma still so prevalent in our society? I’m thinking it comes down to fear and laziness, same as any other social prejudice matter.

When I first started writing for BringChange2Mind, I wrote about the way that public shaming occurs in everyday speech with phrases like “tinfoil hat”, which I still find appalling when I hear it in the news or read it online in reference to an individual dealing with a thought disorder. The spectrum for any mental illness can include so many variables that it’s ludicrous to box a person in with an offhand remark. I’m often one to ask people to mind what they say because words can hurt.

For example, a person is not “so OCD” because they lined their shoes up in the closet. That’s just being tidy. The weather isn’t “so schizophrenic” because the weather doesn’t experience mental fragmentation. It’s wind and clouds. No one’s “having a panic attack” because their favorite song is on the radio. That’s called “exuberance”. And holding your ground when people say stuff like this isn’t being “too sensitive”. I won’t advocate fighting or arguing, but if you have a way into the conversation to bring to their attention that you take offense because you deal with the symptoms they’re using as the basis for humor, perhaps they’ll understand. It’s hit and miss, admittedly, but most of the time, in my experience, if you approach discrimination from a positive perspective, people will listen.

What we say and how we say it isn’t just about talking in the safety of our friends who agree with us. It’s about putting ourselves out there when the time is right, when the situation will benefit from it. So go eat something healthy, take a nice walk, and keep those conversations alive. The future of change is in our hands.

 

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Time Out of Mind

So we find ourselves in a difficult place sometimes. How brave do we have to be? I’d say the answer lies in how much humanity we have within ourselves. Getting past the symptoms and the stigma is one thing; reaching out and bonding is another. Both are necessary to move us further along the path to self-awareness and support. Let’s keep those conversations going. Initiate the change with one kind word.

face-805559_960_720Sometimes I get curious and I just have to ask, “What’s it like on the other side of me?”

While I’ve been doing research for my book, I’ve had the occasion to talk with a couple of friends and after asking that question and receiving two very different approaches to the same answers, I got to thinking about the families and friends of people with schizophrenia and how common this conundrum really is. How much do they know about the disorder, the symptoms, or what their loved one is experiencing? How much of what they know is assumptions based on the social stereotypes we all live with, and how much is informed through doctor’s opinions? How often does the person with the illness feel safe enough or trusted enough to tell their story? Then I did like all good researchers and turned the questions back on myself. How often do people ask me what it’s like or tell me what it’s like for them? I realized this is one area where that elephant in the room casts a big shadow. Dialogue rarely happens.

I’m generally alone when it comes to talking with another person about my symptoms. They rarely open up and discuss their side of the experience with me, without me asking them first. Mental Health Awareness Month has a nice ring to it, and the altruism is respectable for people getting involved in stigma busting, fundraising, and public awareness events, but what about the initial starting point, the actual conversations with people who live with mental health disorders, especially the ones involving psychosis, that monster under the bed that no one wants to admit to being afraid of? In my experience, there seems to be a missing puzzle piece. So how do we as a community engage one another in that most essential one- on-one, face-to-face, real conversation?

I know it’s hard to discuss symptoms due to the many misconceptions out there, and it’s even harder when someone wants to remain anonymous for fear of backlash and bullying, but that would seem to me to be where trust is implicit. I wouldn’t discuss my innermost secrets with a complete stranger, so why would I discuss my mental health with them? No, it needs to start with trust, plain and simple. How forthcoming my friend or family member will be is entirely up to them.

Often I have heard the phrase “My child/relative/friend doesn’t want to admit that they’re sick.” If your loved one is dealing with a thought disorder, there’s a very good chance that they’d happily admit that there was something amiss were it possible for them to discern that. I have mentioned this symptom in my blog numerous times—and I can’t stress it enough—but anosognosia is what’s likely causing your loved one’s comprehension of their illness to be shortsighted. The symptom tells them they have no illness. It’s not their “fault”—there’s no blame here. If this were stomach flu, you wouldn’t accuse them of vomiting for attention. You wouldn’t say, “They just refuse to keep their food down,” as if they had a choice in the matter. You can clearly see what a trap your loved one is in from the onset. The brain lies to itself. This is not willful incorrigibility, this is the disorder. It takes so much work to get to a point where understanding this symptom makes any sense. I still wonder. I sometimes consider that I’m a medicated zombie with nothing to look forward to but the punishment of sleep and the banishment from my friends because “they” think there’s something “wrong” with me. It is a vicious symptom. Dealing with it takes patience all around. Imagine if you were constantly being told that everything you knew was false.

Then there’s the issue of asking what it’s like to have to deal with me, the schizophrenic friend. Talk about fodder for isolation—no one ever speaks to me about it. They find it easier to say things like, “You don’t look schizophrenic” or “You don’t act crazy” as ways to say that they’re more comfortable not getting involved beyond a certain point. So our conversations can be stilted or excessively polite or politically correct to the point that we exist in a brief vanilla bubble of blandness rather than open communication, leaving me to wonder, “Do they fear me? Am I the renegade lunatic of their news-clipping nightmares?” And of course, that is precisely what we mean when we address stigma—the marked sense that our discomfort with one another stems from forces outside of ourselves like little social puppet strings controlling our behavior when we really want and need to connect.

So we find ourselves in a difficult place sometimes. How brave do we have to be? I’d say the answer lies in how much humanity we have within ourselves. Getting past the symptoms and the stigma is one thing; reaching out and bonding is another. Both are necessary to move us further along the path to self-awareness and support. Let’s keep those conversations going. Initiate the change with one kind word.

 

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Refuse to Settle

In both of these situations a huge double standard exists. Private and public insurance companies consider it cost effective to treat psychiatric illnesses utilizing clinicians with limited knowledge and training. And they are NOT willing to provide comparable access to care provided by those who have a deeper knowledge, specialized training and skill sets. To me that is analogous to saying that broken bones should be treated by a family practitioner rather than an orthopedic surgeon.

8 years ago the Mental Health Parity and Addiction Equity Act of 2008 was heralded as a major victory against the stigma of mental illness. The law was supposed to eliminate (for the most part) financial and treatment inequities for mental health care. Co-pays, deductibles and treatment limits could no longer be more restrictive than for ‘regular’ medical care. The definition of parity is the state or condition of being equal, especially regarding status or pay.

There is no doubt that in many ways, the Parity Act has made a positive impact not just for my family but for many of the families I’ve worked with over the years. There is also no doubt that the current laws do NOT guarantee equal coverage or equal access. But in the span of a few short days, I feel like I’ve been hit front and center with the harsh reality of gaping holes in parity and equity.

The following two examples are real circumstances experienced by real individuals. Names and other details have been changed to maintain confidentiality. However, these two cases are anything but unique.

Example #1*: A 20-year old man, ‘Bryan’ walks into a local agency seeking mental health services. He shares that he has a history of deepening depression with frequent suicidal thoughts often accompanied by a plan. Although he doesn’t currently feel suicidal he recognizes that he is in a cycle that is getting worse. Bryan has insurance and saw a psychiatrist recently but stopped going after his insurance denied coverage. As a result, Bryan has run out of the medication he was prescribed. It turns out that Bryan’s insurance has a $4000 deductible. It is unlikely that even if he sees a psychiatrist and therapist regularly for a year he will not meet his deductible. Essentially he will be paying first dollar for every visit, every treatment. However, (and this is the part that really got me fuming), his insurance company shared that visits to a primary care doctor are exempt from the deductible. So as long as Bryan seeks treatment from a generalist rather than a specialist, his insurance will pay.

Example #2: ‘Conner’ was diagnosed with schizophrenia when he was 25 years old. Over the past 6 years he has been in and out of hospitals while his illness progressed to the point that he cannot live independently. Recently, Conner’s family learned that his Medicaid insurance was being switched to Medicare because of the length of time he has been deemed totally disabled. It turns out that Medicare puts a lifetime cap on inpatient mental health benefits. Coverage for inpatient treatment in a psychiatric hospital stops, forever, after 190 cumulative days. If, however, Conner is hospitalized in a general hospital (with or without a psychiatric unit) there are no limits on the covered number of days of inpatient care.

In both of these situations a huge double standard exists. Private and public insurance companies consider it cost effective to treat psychiatric illnesses utilizing clinicians with limited knowledge and training. And they are NOT willing to provide comparable access to care provided by those who have a deeper knowledge, specialized training and skill sets. To me that is analogous to saying that broken bones should be treated by a family practitioner rather than an orthopedic surgeon. Why don’t we have our car’s failing brakes repaired at an oil change franchise instead of by a mechanic trained in brake replacements? No matter that our car’s brakes may fail, plowing into a school bus or a crowd of bystanders. It seems to be primarily about saving dollars on the front end. Regardless of the rising costs on the back end.

I wish I could wrap up this blog with a nice, neat solution but I can’t. There is no one singular problem so how can we presume to have a singular resolution? Over the years many of the families I’ve worked with have limited resources and are grateful for any treatment they can obtain. But why, I keep asking myself, should they or anyone else have to ‘settle’? It’s not just about individuals, it’s about all of us. Who has the right to decide that the brain is less worthy of health care than any other part of the body? No one should have to settle.

#MentalHealthMonth #StigmaFree

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Advocate from the Inside Out

Besides taking the best care of myself that I can, sharing that awareness with others—both those living with mental health issues, and those who love them—actually helps me stay in the saddle. I use the tools at my disposal: experience, strength, and hope. Those of us who’ve been down these roads are the ones who’s voices should be heard first—we’re in the unique position of having something to share from the inside out.

advocateSince 1949, May has been celebrated as National Mental Health Awareness Month, the purpose of which is to inform the general public of mental illnesses like anxiety, bipolar disorder, depression, PTSD and schizophrenia. In 1946, President Harry S. Truman and the 79th United States Congress put into effect the National Mental Health Act in response to the number of WWII veterans dealing with mental health issues, not just from the stress of wartime duties, but as a response to war in general. The veterans also provided the National Institute of Mental Health with a cross section of the general population of America at that time.

Fast-forward sixty-seven years and we’re already two weeks into what, for our stigma-busting community, should be a time of true activism. It’s the opportune moment to reach out to your families, friends, and community in ways that suit you best. For me, that’s upping the number of texts and calls I put out to my friends who live with their own diagnoses, as well as those who support me on my path to management of my own. I have to let my regimen do its job and help me rise above those feelings of inadequacy, the ever-present social awkwardness that self-stigma insinuates, and any other concerns that haunt me from back when I didn’t understand that it wasn’t the rest of the world that was out of balance with itself.

I don’t take my mental health management lightly. Since I received my diagnosis in 2010, I’ve been voraciously soaking up any and all information about what’s had ahold of my brain and behavior. I had to change lenses and refocus my viewpoints on self-care, diet, exercise, and medicine. That’s a lot to ask of a person with a thought disorder, especially given that trust is a term which doesn’t ride so easily on this journey.

It took me six years to finally accept the necessity for drugs in my life. It took a second failed suicide attempt to wake me up to the pain of restraints, both physical and emotional. I still feel the pinch, the discomfort of loneliness, the helpless and violated feeling of stigma, but that doesn’t stop me from considering alternatives that work. After self-medicating with alcohol, or white-knuckling it through every bout of psychosis or anxiety, I finally surrendered to the expertise of the doctors and psychiatric professionals who’d seen the ravaging effects of schizophrenia on countless other patients. I had to trust, against my instincts not to, that they had my best interests in mind. They brought mental health awareness to me—no mean feat considering my paranoia.

Besides taking the best care of myself that I can, sharing that awareness with others—both those living with mental health issues, and those who love them—actually helps me stay in the saddle. I use the tools at my disposal: experience, strength, and hope. Those of us who’ve been down these roads are the ones who’s voices should be heard first—we’re in the unique position of having something to share from the inside out. By initiating the conversation we can bring attention to the many facets of the feelings we deal with, none of which would be anything close to ordinary for a “normal” person—or for those with visible illnesses and conditions—but are daily occurrences for us. Shame, stigma, derision, dismissiveness—the unhealthy and damaging mindsets which would benefit most from a month dedicated to mental health awareness—all need to be corrected.

How often have I heard “You don’t look crazy to me” from someone, well- intended or not? Just how am I supposed to “look”? This stereotype has been around since Shakespeare penned King Lear’s Poor Tom in his redundant clothing—multiple layers of mismatched gear—and word salad ramblings about Flibbertigibbet, ratsbane and porridge, sketching up a lively picture of a wretch in need of psychiatric care. Newsflash: I’ve been there. I spent years sleeping under coats and newspapers, ate little to nothing, lived on coffee and cigarettes, and suffered the slings and arrows of outrageously bad fortune, all the while never being taken seriously with regards to my mental health because I was an artist, an eccentric, “quirky”. I was caught in the grasp of madness in a world with little to no awareness of it whatsoever. At least today there’s a silver lining. At least we can bring change to mind.

So for me, these are a glorious thirty-one days, this month of May. It is a time when brave souls everywhere can and should take up the mantle and, through public displays of solidarity, cry out: “I’m in here and I’m real! I have a mental illness and I matter!”

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The Worth Living Story

I wanted WL Apparel to provide that sense of belonging, that sense of fitting in, of feeling proud about life. Wearing WL allows us to be part of a community or team. It also continues the conversation about mental health awareness. It gives great pleasure to announce that a portion of the proceeds from the sale of Worth Living items will be donated to Bring Change 2 Mind. This amazing group has given me so much over the years. I never imagined I would ever be able to give back.

IMG_2223I remember standing on Hollis Street in Halifax, on a cold and windy March evening, some snow falling. My family waiting for me across the street at a hotel. I stood for awhile, wondering what to do. I wanted the mental angst and turmoil to be gone. I wanted my life to be gone. I was completely devastated by mental illness. Depression. OCD. Anxiety attacks. My career gone as a result.

Do I walk to the MacDonald Bridge to find relief or do I cross the street? Suicide had been a common thought for awhile. I stood, overwhelmed with emotions, crying, trembling. I had little understanding about what was happening to me.

I crossed the street.

But it gets worse.

Years of insomnia. Self isolation. Hiding from the world. I had a need to be alone but I was lonely.  Planning my own death. It all led to the evening of March 11, 2003.

I had a mental breakdown that evening.  My mind came undone, some parts functioned, others did not.

My life was shattered. A wonderful girlfriend and my career had been ripped away by mental illness. Not only was depression present, all aspects of my life had been impacted.

Months spent in bed, years confined to the house.  Necessary but difficult for me, as a lawyer, to comprehend. I thought logically, focused, with structure. There was no form of rational thought with depression. It scared me.

Years of therapy. My immediate family were wonderfully supportive and understanding.   The meds worked.  I was a fortunate one to have the path to health come together.

By the autumn of 2007, I considered myself to be healthy. Not quite recovered, but getting there.

I had this need to explain what had happened to me. I could write and talk about my journey. As a lawyer, I knew I could talk in public.  Back then, few people were sharing their story of mental illness. With no self-confidence to speak , I chose to write first.

The local newspaper ran a regular column by a woman in Florida about her life with depression. I knew the paper took if off the wire service, but I was still hopeful they would be interested in a local contributor. I dug down deep to write it, very emotional to do. Taking a deep breath, I sent it to the paper. I checked my emails often the next few days, hoping they would respond. I needed to feel accepted. It was so hard to reach out to the paper. I waited a few days, then weeks. They didn’t respond at all.  It hurt. I felt rejected.

I wasn’t giving up though. I went bigger, sending it to a major Canadian newspaper, the National Post. I received an email the following day confirming it would appear in a new series, All About Bouncing Back. The article was published on February 20, 2008. The editor at the paper chose the title – How I Returned to a Life Worth Living.

She understood my journey. Her acknowledgment of me was a huge step in my recovery. I was so excited to see my name in print. At last, I felt like I would be heard.  I was emotional, but it was tears of relieve. I had arrived at a good place after years of trying.

I have used those words – Worth Living – and that theme since in my speeches and writings. I live those words.

For me, Worth Living means more than simply enjoying a special moment, though that is so important in life.  The words have a more significant meaning.

I will never forget the darkness of depression.  The image of my standing on Hollis Street considering a walk to the Bridge will never leave me.  I welcome that memory though. It allows me now to truly appreciate my life everyday. My life is full of context.

A simple story, I enjoy weather . Let me explain, to feel the warmth of the sun and see a clear blue sky provides such comfort. A true sense of appreciation.  I also enjoy a cold winter day. To feel the coolness on my face, I feel alive.  It’s a wonderful world.

The best world is in my healthy mind. Without that, I would have nothing. The days of my having nothing are no more.  I have dismissed them.

I mentioned I was a fortunate one. I consider myself to be recovered from mental illness.

I want to share my idea of Worth Living with people. I formalized ( the lawyer still surfaces at times! ) my approach to my speeches and writings under the brand Worth Living. I have launched a website www.worthliving.co.  Worth Living is all over social media.  Facebook : www.facebook.com/worthlivingKA.  Twitter WorthLivingKA. IG _worthliving.   Soon to be on snapchat and periscope too!

Worth Living provides the means for me to promote my keynote speeches, some consulting , and apparel. Yes, we have Worth Living Apparel.

I wanted those of us who have or had a mental illness to feel like they are not alone. That sense of loneliness can be a devastating part of mental illness. I am a huge Rolling Stones fan , as some of you know, and have traveled to quite a few of their concerts. One part of any concert trip is to wear Stones gear the entire time. As I would go through airports or the streets of the city of the concert, I would see other fans from around the world wearing  Stones gear. There would be a mutual acknowledgement between myself and other people, that hey, we are fans!  I felt like I was part of a community , all sharing the Stones. I have stood alone at a concert with 80,000 people but I didn’t feel lonely.

I wanted WL Apparel to provide that sense of belonging, that sense of fitting in, of feeling proud about life.  Wearing WL allows us to be part of a community or team. It also continues the conversation about mental health awareness.

It gives great pleasure to announce that a portion of the proceeds from the sale of Worth Living items will be donated to Bring Change 2 Mind.  This amazing group has given me so much over the years.  I never imagined I would ever be able to give back.

My life is now Worth Living. Your life is Worth Living.  Tell me your Worth Living stories.

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Isolation

I wanted to be alone, except that I didn’t. I didn’t want anyone to contact me, except that I did. I didn’t want to isolate, but it was all I knew to do. So I stayed in. A lot. No one to talk to—no texts, no calls, no social media, no contact. The blandness of it staggers the imagination. And I didn’t want any of it.

psychoSuperman’s Fortress of Solitude. The Batcave. Croft Manor. All places of retreat, from the realm of baddies to a world that misunderstands. A place to think, a place to take off the mask. A sanctuary. An isolated place. Great for superheroes. Not so good for a person with a mental disorder.

It’s not as if stigma doesn’t isolate us enough. We might chose to be alone, take a little down-time; we have that in common with everyone. It’s when our symptoms dictate the isolation that the trouble starts. It goes against the human condition. We hairless apes are a cultural lot. We commingle, cohab, cowork, and cooperate. To be isolated beyond a natural moment of solace is to be lost in a black hole of Why Am I Here. It’s not only counterintuitive, it’s harmful.

While I’ve been going through a recent adjustment to my new medications, I’ve run through the checklist of initial side effects of this oppressive flatness to the world around me. Where did I leave my emotions? Where did I hide my excitement and joy? Why bother trying to look for those lost attributes? They’re not in the sock drawer or the dryer. I want to give up but I don’t want to. It’s as perplexing as it is annoying, and I know I need to ride it out. Just when I think I’m getting the hang of it, I find an old symptom resurfacing, and it takes outside help to bring it to my attention. As in, my best friend contacting me after ten days and saying, “HB—where have you been?” A couple of coffee dates with friends and I’m aware from their concern that I stumbled down the rabbit hole without even noticing. Never mind that I missed therapy or got into the habit of sleeping away my worries and depression. I broke my pact to call myself out to my friends when I was letting the bed win. I didn’t care enough to care or not to. I just hung out in my lair with my tech and my snacks. I wanted to be alone, except that I didn’t. I didn’t want anyone to contact me, except that I did. I didn’t want to isolate, but it was all I knew to do. So I stayed in. A lot. No one to talk to—no texts, no calls, no social media, no contact. The blandness of it staggers the imagination. And I didn’t want any of it.

Isolation in schizophrenia is considered to be a red flag. It is a warning sign that other symptoms may be cropping up. Withdrawal from social activities might trigger paranoiac thoughts, suspicious behavior, emotionlessness, or deterioration in personal hygiene. Isolation may stem from high levels of social stress. The loss of social contact itself is one of the most devastating aspects of the symptom of isolation. And it’s not exclusive to schizophrenia; that just happens to be my diagnosis and this blog is about my personal experiences. I have friends who live with chronic depression and bipolar disorder who frequently discuss their symptoms of isolation.

Unconsciously removing ourselves from the stream of life because we can’t find a foothold in its opportunities affords us no chance at the rewards or benefits of the normal life we seek through our regimens of medication, talk therapy, diet, and exercise. I’m not one to dig in my heels and brat out. I’m actually surprised to find myself hunkered in the bunker awaiting word from the outside that I’ve been gone. More surprising still is the news that I’m actually loved despite my awkward disappearance, that the world isn’t as flat as my symptoms tell me, and that people genuinely want to be with me, to interact with me, because I’m a good person regardless of what my symptoms say.

Last week I talked with my sister. I thought it had been a few months, like since my last hospital stay. She said it had been more like two years. I couldn’t comprehend it. The problem was that my mind had fixated on the idea that she didn’t like me and that no matter what I said or did, she never would. Which wasn’t true. That was paranoia. That was my illness. I reached out to her during this last bout with isolation, as an attempt to make contact with someone I love. My mental disorder had stolen all that time from me and robbed me of my family. Isolation in the long term ruining my life, and my having had no say in it because my illness decided, not me. Now there’s opportunity for change. It only took a phone call.

The secret hide out is fine for superheroes. For us mortals with mental disorders it can be a prison. Let’s remember to check in with our friends and families and be bigger than the stigma and stronger than the symptoms. I’d rather save the day from darkness than let it swallow me whole.

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Letters to Bella

That lesson is that no matter how small the world around you may seem and no matter how many perfect smiles you see, that behind closed doors we are all human. We each have stories. We each have known pain. There is no shame in being human nor is there shame in having a mental illness. Sometimes it is in opening the door and showing our true selves that we allow the world to open it’s arms and embrace us.

Opening the Door Picture_oIn life we are all on our own individual journeys guided by moments and people. Sometimes those moments or people bring us great pain and other times they provide us with beauty or knowledge. It takes a great deal of power to open your arms and let people in, even more so when you are struggling with mental illness. We are all vulnerable and each of us fears that. This fear is enhanced ten-fold when you are battling mental illness or living in fear because you are different than others. It seems we fear letting people see our tears, pain, or true selves. The ability to hide has become amplified thanks to the era of technology. We can now appear as we like. Smiling faces, perfect lives, hair and makeup in place, and glowing health. What is hidden behind all of that though? Why do we strive to be something that is perfect when we are perfect just as we are, flaws and all? That is a question I recently asked my daughter.

You see I am the mother of a child who went through bullying that hurt her spirit. I saw the light dim for a good year before it slowly started to glow again. My daughter is whole-heartedly my mini me. There was a time during all of this that I felt guilt for being the role model I am, but then I realized that is plain silly. I have always danced to the beat of my own drum. Wore my Doc Martens with pride and was not afraid to chop my hair off short. Comic books, 80’s music, dancing in the grocery store, love for all shows supernatural (huge Buffy fan), and a quirky/introverted charm. My spirit inhales Star Wars, Star Trek, and all things imaginative. My daughter is no different. My kids now see “me” every day. You see for years I lived in the shadows, hidden behind depression and PTSD. I no longer do that and refuse to hide who I am anymore. If I am sad, happy, mad, or all emotions in between people know it. This is the role model I wish to be for my children.

My husband and I have raised our children to keep the door open and learn as much as they can. Life is too short to judge others. So when my daughter started having words thrown at her for being different it hurt her spirit. She expresses herself through her style, much like I do. Being introverted we do not always go up to people and start conversations, so we open the door through our style. I saw her suffer through anxiety and depression for a year, even vocalized a suicide plan. We supported her and spoke loudly to ensure she was safe. The light slowly started to glow again and then recently she was hit back down when a best friend of hers moved away. So I decided to do something different. As a teenager I remember hearing my parents, but thinking they never understood. My daughter is no different. I needed her to hear stories. So I reached out to the community I know for letters to be sent to her. Letters from those who have been bullied in the past or who were bullies. I thought perhaps we would receive a few letters, but what started out as a small idea turned into over 120 letters and gifts from across the country and Canada. The stories we read were amazing. Stories of perseverance and power. People who opened their hearts to tell my daughter about their bullying experience, sharing stories they had never told anyone not even their parents. My daughter and I cried many a tear reading these. Two people sent boxes of letters from kids at the high schools they teach at. So many stories!! It was astonishing and powerful. It taught my daughter the lesson I wanted her to learn though, one my words were not teaching.

That lesson is that no matter how small the world around you may seem and no matter how many perfect smiles you see, that behind closed doors we are all human. We each have stories. We each have known pain. There is no shame in being human nor is there shame in having a mental illness. Sometimes it is in opening the door and showing our true selves that we allow the world to open it’s arms and embrace us. These letters now hang on my daughter’s wall. A reminder to always be true to herself. That is the best gift she can give the world. Be you.

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Rhymes With Patients

To put things into perspective, it’s been twelve weeks since my last breakdown. That’s eighty-four days since I was admitted to the psych ward, seventy-two since I was discharged. Just a little over ten weeks of being on my own in the New World of a daily anti-psychotic/depression/anxiety medications cocktail. To put it mildly, I’m still adjusting. This is not a game for the impatient.

patients

To put things into perspective, it’s been twelve weeks since my last breakdown. That’s eighty-four days since I was admitted to the psych ward, seventy-two since I was discharged. Just a little over ten weeks of being on my own in the New World of a daily anti-psychotic/depression/anxiety medications cocktail. To put it mildly, I’m still adjusting. This is not a game for the impatient.

People ask me if I’m feeling better. They don’t ask me how it feels to be dealing with the effects of being medicated. I get smiles from well-intended individuals who have no idea what I was going through or what it feels like to have survived it, and if they were to inquire, and if I were going to answer, again, not for the impatient. It’s a lot to process and I’m in the middle of it.

First off, how do I draw a comparison for you? I’d have to begin by telling you what it’s like to have schizophrenia. Which means I’d need to have the experience of not having schizophrenia in order to explain the symptoms from the outside. A bit like asking a fish if it knows what it’s like to live underwater; the fish has no point of reference, being that it’s never lived on dry land. It’s born into the water and lives there all its fishy life. So I attempt to draw a picture of a mind trapped in psychosis for the larger symptomatic view, and break it down into smaller, basic components for the day-to-day living. I have to use metaphors because actually describing how I feel or what I experience would be metaphysically absurd. The well- meaning person would have to listen to seeming gibberish as I spoke about sounds being generated from nothing, thoughts which only correspond to experiential data and not to a specific reference point, and the chemistry of panic and depression running simultaneously like equal pulls from a water faucet, and now we’re back to the fish.

In my experience, when it comes to schizophrenia most people only know movie and television stereotypes. They’ve seen the crazed killer on the loose from the insane asylum, the comic book lunatic scribbling nonsense on their dorm room walls, or the mad professor with a penchant for over-explaining obtuse theories. In common, each has an imaginary friend or receives conspiracy information from the Beyond, and eventually men in white coats take them away in a straightjacket, kicking and screaming while being hoisted into the ambulance. They’re characters from films and plays, a script writer’s imagination enacted by a sane person, directed by a filmmaker with a feel for the macabre. These are characterizations based on the viewer’s worst fears of loosing control, of loosing friends and families and all that’s precious. There’s also a kernel of the social bias that the crazy person is in control of their madness, another stigma-induced prejudice thrown in for extra measure which is less than slowly shifting toward a more realistic understanding of the disease. Did I mention patience?

The tool I use is research. I start with myself as the subject and follow the breadcrumbs. For example, my therapist is a solid sounding board—I can discuss my feelings as colors, sounds, interpretations of interconnected minutia, and go from there. She has a professional comprehension of my disorder and can suggest to me ideas which are in line with my internal dialogue. I can talk with her about the voices I hear and we can use another language to describe them as “audio hallucinations”. I can go online or to the bookstore and research articles on the subject to get a deeper understanding of where people like myself have been before concerning said voices. I can talk with a friend who has symptoms in common and ask how they deal with them. My psychiatrist can prescribe medications meant to balance my chemical states when they’re askew. I can educate myself, participate in groups, and share my ideas openly with a trusted friend. It doesn’t ensure that I won’t have to deal with the symptoms of my disorder; it means that I have a fighting chance of surviving them.

Back to the question of how I’m feeling. Well, it’s not like having the flu and getting past the barfing stage. It’s not like having a sports injury and, after enough rest and ibuprofen, getting back into the game. It’s more like being from another planet and trying to assimilate the culture and customs of the native population of an uncharted solar system on the head of a pin. While spinning plates overhead on a stick. And dancing on a high-wire without a net. I’m feeling different from that day when I broke down and lost contact with what everyone around me knows as reality. I recognize myself as being worth not dying at my own hand. But I’m currently living without joy, and that, I understand, is something else which I’ll need to relearn. Not the “without” part, but the “with”. My psychiatrist assures me that this drug-induced anhedonia will fade with time.

Patience, young Padawan. Patience.

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Life Lessons From The Couch

I’ve learned to accept that there’s always going to be something to be depressed about but, on the flip side, there’s an equal amount of joy to be found. Seeing bright red tulips standing tall at the entrance to my apartment building is an instant mood-lifter.

This blog is two months overdue. Missing deadlines and breaking commitments, even if due to events beyond my control, still make me feel oh so guilty and badly about myself. The rational part of my brain tells the irrational side to STFU, as I visualize two lobes going at it in a boxing ring. It’s only a blog, words on a page – life will go on with or without the world knowing what I have to contribute. But still, I hate disappointing my readers and I doubt that’s a trait that will ever go away.

It’s kind of funny, depending how you look at it, that I finally have a few minutes to unplug from work. Today makes two sick days in a row. Yesterday I had a needle biopsy in my left armpit for a lump I discovered five weeks ago. Today I’m home because my arm is sore; I’m tired as hell and I need to guard the incision against infection. The results will come over the next day or so. The doc says, “Based on your family history and what the ultra-sound and mammogram show, you don’t have to worry. It’s 99.999999999% likely to be benign.”

By the time you read this, I’ll have my answer. For now, I’ll write as if the news is good and I’ll be back at work soon. “This was just a scare,” I tell myself. It’s a reminder to be thankful for every day, even when I don’t have the threat of the C-word to bolt me into gratitude.

Living with chronic depression and anxiety has prepared me to be ready for the other combat boot to drop at any moment. There will always be the next catastrophe—real or imagined—to catapult me to the brink of despair. Depression has the power to not only brace myself for the worst, but to expect it. I’ve come a long way since the days I thought each phone call would bring tragic news. I used to joke that instead of answering with Hello, I’d ask Who Died? even if it wasn’t 3 o’clock in the morning.

Sitting here on my living room couch, despite sounds of horns honking and sirens 16 floors below, it feels almost peaceful to have a guilt-free day off from work. Admittedly, I’m eager to hear from the doctor, “It’s nothing. You’re fine. Come back in six months for a check-up.” But, for now, it feels right to use this time to clear my head and practice self-reflection. The past months have been weird. My depression started to get worse somewhere around Thanksgiving. No specific event sparked it, but that’s the nature of this mental illness. I’m used to it by now. I used to think I was a failure at life for becoming depressed for no cause-and-effect to easily explain it. It’s still frustrating, but to a lesser degree.

My doctors and I decided to increase my SSRI during this latest bout and I’m working closely with my psychologist to see if there was anything deep down that would trigger an episode. For a millisecond, I felt defeated. Another trip to the pharmacy—where the Cheers theme song plays in my head each time I enter.

I’ve learned to accept that there’s always going to be something to be depressed about but, on the flip side, there’s an equal amount of joy to be found. Seeing bright red tulips standing tall at the entrance to my apartment building is an instant mood-lifter.

Living like this for 30 years, I can go for months at a time feeling okay and then BAM! It’s back like termites I paid a fortune to exterminate. Learning how to successfully manage and cope with depression and anxiety (it only took a decade) has primed me to deal with unwelcome lumps under my arm and unforeseen bumps in the road. The stigma of having a chemical imbalance or faulty wiring doesn’t have the same upsetting impact on me as it once did. But that in no way means that if someone says something ignorant, or acts holier than thou, that I’m immune to it. It stings for a moment, sometimes two, then in a flash I remember that their actions reveal more about who they are – and say nothing about me.

Whatever news today or tomorrow brings, I can count on the loyal people who cheer me on, stick with me through every low and celebrated my triumphs. Despite life’s lumps, they always have my back—or in this case, my front.

Now, if the doctor would just call already.

 

 

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What My Illness Means To Me by Michael Hendrick

A lot of people complain for trite reasons about the things they can’t control, they gossip about the things that are alarming and they judge people for the things they do, but if they lived with mental illness they would realize that pretty much any of that is worthless. It serves no purpose other than building them up from a place of insecurity.

Over the last ten years, as I’ve experienced the heartache of ups and downs, the stress of dealing with side-effects and learning how to build a career on writing about my illness I’ve been asked a lot questions about why I do what I do and what I’m trying to achieve by being so open about my illness. I’ve had myriad answers for all of these questions ranging from trying to buy a house, to just working with the hand I was dealt, but there is always one question all these vagaries seem to come down to and that’s what my illness means to me. What exactly is the biggest thing I’ve learned from having schizophrenia?

While I could talk about a bunch of stuff, I think the one thing it all comes down to is the fact that I can deal with life now. That’s the biggest blessing I’ve received. A lot of people have a hard time with stress from work, family or relationships and this drives a lot of people to therapists and doctors and gurus and any manner of other guidance as they try to seek answers for why life is the way it is.

I think the biggest thing to contend with is the fact that we have little to no control over what happens to us on a day to day basis. A lot of people drive themselves up the wall trying to maintain some semblance of control over everything, when in truth, it’s impossible.

The fact of the matter is that life is crazy. We don’t have any say over what happens or when it happens and the best we can hope for is contentment and maybe even a bit of happiness. That’s what my mental illness means to me. It means that I’ve been through the ringer more times than I can count. I’ve been hit by a metaphorical truck hundreds of times in day to day life with schizophrenia and I’ve learned that life’s little inconveniences, stress, work, all that stuff, while it is hard, is nothing I can’t get through. I’ve seen the worst of it and I know that whenever, wherever it could always be worse.

A lot of people complain for trite reasons about the things they can’t control, they gossip about the things that are alarming and they judge people for the things they do, but if they lived with mental illness they would realize that pretty much any of that is worthless. It serves no purpose other than building them up from a place of insecurity.

Throughout my ten years of living with schizophrenia the main thing I’ve had to contend with has been paranoia. Essentially I’m worried a lot of the time that people are out to get me, I worry that they think bad stuff about me or that they’re making fun of me. But I’ve come to realize that unless people are deeply poor people they don’t consciously do that stuff, so I’ve been able to build a wall up against my paranoia. I don’t know why that notion was so impactful to me, the fact that they might be making fun of me but I’ve wanted all my life to be accepted. It was only when I gave up trying that I was able to breathe.

Schizophrenia has taught me that the opinions of other people don’t matter. It’s taught me that I can deal with the worst of what could happen every time because I’ve already created that scenario in my head.

The truth is, it’s been a long, slow, laborious process of recovery and learning.  I don’t have to worry about little stuff because it could be so much worse. That’s just one of the blessings that’s come from living with the illness. No matter what people say, no matter what they do, no matter what your brain tells you is going on, none of it matters because it could always be worse.

I can’t forget the heartache I felt when I got out of the hospital. About the fact that essentially, I was crazy. I was certifiably insane. The things that I had thought were real for such a long time were just figments of my imagination, and that was a relief, but it was also all I could think about. How could trust my own mind about anything if I was crazy? That point, that lowest feeling of not being sure what was real set me up for the realization that no matter what happens in my life, at least I’m stable.

It’s been a long, painful and educational process to learn how to live with mental illness but through it all, the fact has always remained that it could be worse. I just thank heaven that I’m not out on the street, that I have a roof over my head and that I have food to eat, a computer to write on and a bed to sleep in. Nothing else matters because at least right now, in the here and now, I’m comfortable and it could always be worse. I think a lot of people would do well to come to that realization.

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Being OK With Being OK by Davs

What it is to be OK, I am learning only now. Learning to be OK with being OK? That’s where I fall. I’m supposed to be this great mom, artist, friend, writer, individual who breaks glass ceilings. I’m supposed to have an active social life, always adding to my contacts, painting soup bowls for charity. Never sweat pants, never three days with no shower, never sitting alone in a stairwell crying because I can’t come to terms with just being OK. Just here, living, breathing.

Being OK image img_7755I’ve been ashamed of myself, for months, maybe longer. Ashamed because I have not lived up to the person I thought I was going to be by this time, after making some life changes a little over a year ago.

It’s hard to look at yourself in the mirror and not find everything wrong, when you are disappointed in yourself. Guilt, I have too much. Emotional issues I believed had been laid to rest, reawakened, unexpected, like fast zombies, because we all know zombies are supposed to be slow.

I am ok though. I am managing. I’m not on top of the world. But I am not at the bottom. I guess being bipolar for over twenty years has left me confused as to what it is to be ok. Before the medication, before the therapist, before the psychiatrist, before I began seeking help for my mood swings, it was either or and no inbetweens. Either singing from proverbial hilltops, or swinging from a metaphorical noose.

What it is to be OK, I am learning only now. Learning to be OK with being OK? That’s where I fall. I’m supposed to be this great mom, artist, friend, writer, individual who breaks glass ceilings. I’m supposed to have an active social life, always adding to my contacts, painting soup bowls for charity. Never sweat pants, never three days with no shower, never sitting alone in a stairwell crying because I can’t come to terms with just being OK. Just here, living, breathing.

But here, this is the thing, I am here, I’m alive, I’m breathing and I’ve got to learn to be OK with not always being on top of my game. What good does it do me to pick myself apart? So what? So what if my art isn’t selling right now? So what if I didn’t take an extra two minutes to apply mascara today? So yeah, maybe I’m not wearing a cape and scaling buildings. But why did I ever think I was supposed to be a superhero? This isn’t a movie. Nobody can be great all the time. I catch a voice inside me saying “at least you knew how you felt before. Not like this, where nothing is extreme” I admit, being medicated has been a journey. Nobody wants to want to die, but when you find yourself always at the extreme end of a feeling there is some comfort in knowing exactly how you feel. Not having that intense emotion all the time leaves me confused, to be honest. Am I happy? I’m not laughing hysterically. Am I sad? I’m not making plans to kill myself. I mean, that is strange, right? That I don’t know that I’m OK. That I have to remind myself that I’m OK.

Please don’t misunderstand this: I’m glad I got help. I’m glad for this. This new reality of being OK. But it’s new to me, and alarming at times. It confuses me, it leaves me a lot of room for thought. Before I got help, very little thought was put into some of my biggest life decisions. And I paid dearly for that. I was so fervent in whatever opinion, or feeling, or belief I had, before I got help, that I missed out on a valid reality; just breathing, just being alive, just being here. My dreams come from that time in my life, I like to call it the ‘Hot Air Balloon Era’ and they are so big, I’m embarrassed to tell you. And maybe a big part of what makes this new reality of simply being OK, so hard. Because the urgency of my emotions did not have time to just be OK.

Yes, I am not winning any marathons. But I’m not burning any bridges either, and I need to appreciate it.

I am here, I’m alive, I’m breathing.

I’m here, I’m alive, I’m breathing.

I’m here, I’m alive, I’m breathing.

You have to admit, there’s something very beautiful about that.

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I, Robot

“Drug sleep” redefines what I used to know as slumber, but then the effects of my medication seem to be redefining so much more than I’d expected that it’s not surprising that something as simple and natural as sleep should become a different experience. Disorienting.

robot-at-the-windowEvery day starts out the same: my comforter and sheets are soaked from night sweats, and pushing them off feels like what I imagine lifting a car would be like. “Drug sleep” redefines what I used to know as slumber, but then the effects of my medication seem to be redefining so much more than I’d expected that it’s not surprising that something as simple and natural as sleep should become a different experience. Disorienting. I fall asleep without the gentle nod of the Sandman—I’m just down for the count, unconscious. Then I’m suddenly awake, soaking wet, pinned down by two tons of bedcovers.

Waking up doesn’t exist—I’m just awake. Not alert, not marshmallow- headed, just middle-of-the-day awake…at 7am. Shower, breakfast, medication, all by rote. Like a programmed automaton following its morning protocol. I sit down to write and forget that the morning ever existed, that I was ever asleep, that I am sitting down to write—it’s all clear and sharply focused, but on nothing. Nothing at all. There is a distinct lack of something human in my actions. It feels akin to depression—and it may well be—but if it is, I don’t get to feel it. No grief, no sorrow, just the emptiness of being a zombie on a treadmill, marching steadily toward nothing, no goal, no ending, no happy, no cookie. Nothing. It’s supposed to be better than living with my symptoms, but I’m not certain about that. I consider that life with highs and lows, life with thoughts and actions had something more to offer. All I have now is my art, and I’m worried that I may be losing that, too. Pleasure seems to be missing.

So where’s the tradeoff? How is my medicated life supposed to be superior to my life with symptoms of schizophrenia? I can feel them scratching at the back of my brain, the paranoia, the fear and anxiety. Occasionally a voice might cut through the wall of robotics to annoy me with some asinine pronouncement or cruel jibe. In eight short weeks I’ve been forced into the experience of compartmentalizing, of attachments and boundaries, experiences and concepts which I used to struggle with because I couldn’t comprehend them. Now it seems as if I’ve had to learn a new language and pass for native in under two months time because drugs. Yay. Again, disorienting. What might take a normal person their lifetime to learn, I’m picking up at the accelerated rate of a high-end droid. And for what, I wonder? To be the B-movie monster from the late night double feature? It’s Alive! It Walks Among Us! The Schizophrenic From Beyond the Ward!

I jest, but I really do feel more alienated as a sedate person because my reactions and responses to everyday stimuli seem so appallingly flat to me now. This can’t be the way that so-called normal people live, so numbed to the world around them. How would anything ever get done? I can live with the night sweats, I know how to do laundry, but is life really meant to be so lackluster, so purposeless?

I understand that over time my meds and I will find a cohesion that feels balanced, but how can that really be predicted? If every human being is different, and those of us with distinctly different wiring are given compounds to short change the symptom banks, how reliable is the outcome? The sleep is new to me, but so is the dullness. I’m no longer afraid of people, I don’t get flustered or go into confusion at the grocery store, reading paperwork doesn’t boggle my mind, but I still live with the effects of schizophrenia, the micro-short working memory, the echolalia, the overt social awkwardness. These well-worn components of my life are still there, I just don’t—or can’t—respond to them in the same way. Did I mention disorienting? It’s not as if my memory of my lifetime was replaced by better working circuitry. I can remember the dark times, the terror, the urgency to react to panic, the suicidal thoughts. They’re like stories now, someone else’s story, but somehow mine nonetheless.

I’m told to be patient, and I’ll take that under advisement. The positives have outweighed the negatives thus far, so I find a glimmer of hope in the structured life I’m living since my hospitalization. But the lack of joy, the sense that something is missing—those thoughts won’t leave. When I try to consider my future as a medicated man, I ponder a love life, a family, the possibilities that might have not been mine before, and I find hope. On the other hand, if I’m going to continue to live underneath this car and wake up to the weight of a somnambulist’s twilight, how will I ever find myself? I’m here, I just don’t have the map.

 

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Fear of Fear Itself

So today, I feel sadness, anger, heartache and relief. But I will not feel fear. I have a healthy fear of fear because of its ability to stifle and constrict me and those around me. I will not fear that illness will rear its ugly head and sideline any of my children as they chase their dreams. I will not fear that acts of terror will strike them down. I will not allow fear to keep me and those I love from living life to the fullest. I will not allow a fear of mental illness, or terrorism, to put arbitrary limits on us. I will not allow fear to win.

This morning I woke to find a text message from my oldest daughter.

When you hear the news remember that we are both safe in Prague. Going into the city today, my data is spotty there but I’ll be back on wifi tonight. Love you xoxo”.

I immediately scanned my news feed filled with images and stories of the bombings in Brussels. My daughter and her boyfriend are traveling the world and had been in Brussels just 2 weeks ago.

Relief, sadness, anger, heartache . . . all of these emotions came rolling through my body. I felt grateful for my daughter’s thoughtfulness to let me know that she was safe, even before I had time to worry. I felt grateful that she was safe in a world filled with uncertainties. And I felt more than a twinge of guilt that I am again among the lucky ones. I have three beautiful, healthy, thriving daughters when countless others are experiencing unthinkable loss. Not just losses from today’s act of terrorism, but loss from mental or physical illness, loss from the unexplainable.

Last week I attended a funeral for one of my daughters’ high school classmates who passed away suddenly at the age of 21 during his semester abroad in Spain. His death, apparently the result of a lifelong illness, rocked our community to the core. Losing a child is every parents’ worst nightmare. Losing a child with an ocean between you and them seems just the cruelest twist of fate to add to the unthinkable. Then, and today, my mind goes to that place of ‘what if that was my child, halfway across the world’?

The reality is, I’ve had similar thoughts many, many times over the years when one or the other of my precious girls was in the harshest grips of mental illness, with no will to live. And the reality then and now is that there was, and still is, only so much that I could do to protect the ones I love the most. I can be proactive. I can be an advocate. I can be vigilant. I can be informed. But I can’t control every aspect of my life or anyone else’s.

I’ve lived in fear, paralyzed by the unknown and a sense of hopelessness. I’ve been stuck in bitterness and anger over ‘Why us? Why my child? Why, why, why?’. That fear kept me from moving forward. It kept me from living. It kept me from seeing the hope and opportunities around me. It ultimately made it much more difficult for me to help my children at a time when they needed me most.

So today, I feel sadness, anger, heartache and relief. But I will not feel fear. I have a healthy fear of fear because of its ability to stifle and constrict me and those around me. I will not fear that illness will rear its ugly head and sideline any of my children as they chase their dreams. I will not fear that acts of terror will strike them down. I will not allow fear to keep me and those I love from living life to the fullest. I will not allow a fear of mental illness, or terrorism, to put arbitrary limits on us. I will not allow fear to win.

 

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Be Kind to You: Eradicating Self-Stigma

Years later, I asked a close colleague what people had thought of my leave and of me as a person. She said everyone respected me and spoke highly of my abilities. While a few people knew the full story, she said they judged me based solely on my professional capabilities. If only I had asked that question a few years back . . .

Be Kind to You photo 20150927-IMG_3454As a mental health advocate I preach eradicating stigma. Prejudice compounds the complexity of managing a mental health diagnoses. My tendency to blame myself and stigmatize my diagnoses took years to correct. I now know overcoming self-stigma granted me life.

Two years after being diagnosed with Bipolar I with psychosis and rapid cycling, I excelled in my position at a highly respected university. I thrived managing public relations, events and ceremonies. I was capable. I got the job done. My colleagues and senior leadership respected my work.

But the earlier six-month psychotic episode haunted my every move.

My career was the only rewarding aspect of my life. While admired for my professionalism, I felt like a wet rag. My life was lonely, and I no longer believed in myself. I was paranoid that I would eventually be found out and labeled insane.

I therefore became acutely aware of the smallest interpersonal detail. I lived in fear that my hand tremor in a meeting or racing speech in times of stress might give me away. All roads led to the possibility of being called crazy. Since I was convinced that work was life, losing my position was not an option. While this method of operation provided the university with my undying dedication, I was lonely, miserable and acting the role of a new Kate I didn’t like.

My growing paranoia triggered a second, less severe episode, resulting in a three-month leave of absence. I developed an acute fear of returning to work. Colleagues would certainly be aware of my diagnoses, seeing the reality behind the smoke and mirrors.

Or so I thought. In the end, no one had heard about my health.

Years later, I asked a close colleague what people had thought of my leave and of me as a person. She said everyone respected me and spoke highly of my abilities. While a few people knew the full story, she said they judged me based solely on my professional capabilities.

If only I had asked that question a few years back . . .

I’m public now. I tell my story with sincerity to anyone who asks. I enjoy sharing and pray others find hope and faith in their wellness. The liberation I’ve found with being Kate – not Bipolar Kate –has been refreshing and a stepping-stone to better compliancy and wellness.

A good friend shared a quote by the late feminist and activist Audre Lourd. I find the passage inspiring as it evokes self-acceptance and wellness:

 

When I dare to be

powerful,

to use my strength in the

service of my vision,

then it becomes less and less important

whether I am afraid

Being afraid is no way to live. Let’s stomp out stigma – both the brand you may encounter publicly and the more debilitating kind you tell yourself.

 

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Shackles, Faith and Hope (Epilogue)

Life just changes after you leave the care and attention of a hospital staff, especially in the psych unit where emotions, thoughts, and accommodations to the inner person are the sole focus. Mental health every minute of every day. There’s no transition period. It’s a freaking jump-cut. Here one moment, there the next. No amount of teaching in group could prepare me for the extremes of loneliness that I am presently experiencing.

dog-behind-the-windowSince returning home after my recent hospitalization I find myself feeling a profound sense of loss. Initially, I chalked it up to the inevitability of missing my mates from the ward, but as the days have gone on I’m sensing and experiencing something deeper. I don’t have a definition for it yet, but I’m working on it. Therapy will help, but ultimately it’s up to me to figure this puzzle out. What I do know bothers me immensely, and what I don’t know comes with a sense of foreboding. Research doesn’t have all the answers, and neither do well-meaning friends. Nope. For this one, I’m stranded.

For twelve days my life was regulated. My basic needs were met: food, shelter, sleep, camaraderie. I had a schedule, activities to look forward to, meal times, group sessions, and medication at the same time every morning and evening. How to simulate that when I got back home was one of the first problems to solve. The real world doesn’t revolve around my being “better”. Its events aren’t scheduled, there’s no rhythm to it. I found myself becoming elemental: forage for food, don the same hides each day, sleep with the toy bear, wake up with the sun.

At first I approached it with gusto. I set my alarm to match the hospital’s schedule, showered first to start the day, ate, journaled, even meditated a bit. Replaced group therapy with social media, finding out what my friends were feeling that day. Lunch, exercise, art, then dinner. I actually wrote out a plan similar to the daily routine on the ward and posted it on my fridge. I managed to follow it to the letter for the first couple of weeks I was back, but then something unexpected started to happen. I couldn’t make connections.

It’s not for lack of trying. I’ve called my buddies and gone out to breakfast. We’ve walked in the park and had coffee dates. But when they’re gone, they’re gone. Like they were never there. The same feelings that I have surrounding my flatmates from the hospital. Memories. Ghosts.

It’s not malaise, it’s not the blues. It’s not full-blown depression, either. Life just changes after you leave the care and attention of a hospital staff, especially in the psych unit where emotions, thoughts, and accommodations to the inner person are the sole focus. Mental health every minute of every day. There’s no transition period. It’s a freaking jump-cut. Here one moment, there the next. No amount of teaching in group could prepare me for the extremes of loneliness that I am presently experiencing.

We’d take our thoughts out and share them over meal time. We played like children during occupational therapy, coloring, drawing, bowling together on the Wii. Walks in the courtyard led to intimate discussions of our feelings and emotions, our personal histories. Those worn out footpaths caught a lot of spilled tears as we opened up, becoming fast friends in our recovery foxholes. If we were the soldiers of our own destinies, our individual diagnoses were our countries of origin, our common enemy was suicide. We fought together and became stronger for it, but at what cost? There is no “get well soon” to be gotten to, no “return to normal” when the new normal is a headful of therapy and a bloodstream laced with chemicals. Finding fortitude from within is not for the weak. It is not instant, this isn’t treatment for a broken arm. No one’s gonna sign my cast when the plaster’s applied to the neurological pathways.

Seamless care doesn’t happen as easily with the mental health client as it might with the physical health patient. I’ve had to follow up with my case manager and psychiatrist almost weekly since my discharge, sometimes preempting my regularly scheduled sessions with my therapist, but the appointments focus on matters of finance and medication, not rehabilitation into the stream of daily life. It’s through no fault of the caregivers, it’s just protocol. From my position, that’s an aftercare talking point that needs immediate attention if we’re going to see mental health parity in full bloom some day.

Before I left the hospital, I made sure to share my contact information with as many of my friends from the floor as I could. I’ve been to the zoo with two of them, and lunch with another. We text and talk on the phone. But since each of us is going through our own version of this cycle of reentry, the spaces between meetings and calls has increased as we each learn to live life “normally”—apartment hunting, job searching, grocery shopping, reconnecting with family.

It’s not enough. I wear the same pajamas at home that I wore on the ward. I eat the same meals, read the hospital literature, try to stay active and not allow this depression to gridlock my mind and sabotage all the hard work I did on the wing. My schizophrenia may be in check for the time being, and the future may indeed become a more hopeful one as the medications and I become ever more symbiotic. But the gaps in practice, policy, and coordination of post release care need to be ramped up or the statistical fact that one-third of all patients return to the hospital just might include me, a thought I don’t relish in the least.

That common enemy might raise its flag again and try to plant it in my life. My anxiety is down, my erratic thoughts are contained, but the noted effects of post-treatment trauma and depression are both very real and highly dangerous. Critical continuity of care should be every state’s priority. Suicidal ideation should not even be a term connected with aftercare. It can be avoided, I am certain. It’s a puzzle that needs solving. We need to share the stories, take the issues to voters, and make those changes viable for future generations. We can bring change to mind the best we can, and that change needs to be instilled into the mental health care system also to avoid relapses, unnecessary institutionalization, and heartbreak. Teamwork seems to be the puzzle piece we’re missing globally. I know for myself that I need to keep my eye on the prize: a happier, healthier, more productive life. Even in my pajamas.

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You Aren't Alone by Michael Hedrick

I’ve been in the trenches and I just want to tell you that you aren’t alone and that you can get better.

It’s been ten years since I was diagnosed with schizophrenia. I’d be lying if I said it hasn’t been a wild ride.

In March of 2006 I was in college in my hometown and things were starting to seem different. It was like the little things, songs, commercials, normal noises like traffic or the sound of the refrigerator, even street signs suddenly had a world of significance behind. There were messages in every public medium. The thing is, normal people had no idea, it was only me and, I assume, a few others around the world who could read in-between the lines.

It’s hard to explain what the messages were like but think about it like you’re piecing together a puzzle and every street sign, every piece of body language from friends and strangers alike was some small piece of a gloriously connected puzzle tying all of society, humanity and existence together.

A lot of people talk about paranoia and delusions and hallucinations but not many talk about the connections from one thing to another, tying everything together.

Suffice it to say, in March 2006, I figured out what the connections were saying. I was a prophet and it was on my shoulders to bring a new age of peace to the world. On a Friday night, after smoking pot and being bombarded by messages I knew I had to act before it was too late.

I left at probably 8 or 9 pm and spent the next week on a trip to the United Nations and around the east coast trying desperately to fulfill whatever I thought was my mission. I would walk for hours on end following people because there was something in their body language or because of the color of the bag they were holding, red was evil, blue and green were serene and good.

My trip took me from New York to Boston to a small town in Massachusetts called Woods Hole where I assumed there was a hole through the woods to Canada.

Destitute, terrified, and confused on a lonely back woods road I figured I’d stick out my thumb and try to get back to Boston.

A woman named Cheryl picked me up, talked me down, took me in for the night and bought me a train ticket home in the morning. I knew I had had enough and I knew that despite all the connections, there had never been any concrete proof of anything.

When I got home two days later and told my parents why I had left they took me to the hospital.

Ten years on, and I’m still not sure what my catalyst for getting better was. I will say that the only reason I started taking my meds was to get out of the hospital and then I noticed that I wasn’t as paranoid and that the voices had calmed down.

I stuck with it because, though I was devastated that I was officially ‘crazy’, I knew I didn’t want that life sentence for myself so I worked.

Over the years I worked on behavior, figuring out how to be normal, figuring out how to act and present myself as someone that wasn’t ‘crazy’.

Cycling through the meds, gaining weight, feeling the fire of restlessness, feeling so zoned out I couldn’t function, finally I found the right combination.

I worked on interactions too, displaying the right body language, the right eye contact, every small interaction, even those with cashiers and gas station attendants, was an opportunity to practice and I worked and worked on that until I had it down.

Throughout the process I also learned techniques for calming myself and for acceptance and mindfulness and growth.

I learned not only how not to be ‘crazy’ but also how to be a good kind man.

All that said, it’s been ten years this month and I feel like I should celebrate. Today I’m a writer and a photographer who’s work has been in the New York Times, The Washington Post, Scientific American and a whole host of other publications.

I’ve worked hard to get here and now my goal is to remember how far I’ve come from March 2006 and that nervous paranoid fire of a time when I didn’t know who I was or what was happening to me.

I know a lot of people have had more trouble with their illness than I have and I have nothing but respect for the people who suffer.

BC2M has been an advocate for these people and for me and without their support and the support of others I wouldn’t be where I am today.

For anyone asking how they can get better, just know that it takes time and it takes effort. Eventually you’ll get to a place of stability where your biggest problem in a day isn’t the voice in your head, or your paranoia, but instead what you should eat for dinner.

I’ve been in the trenches and I just want to tell you that you aren’t alone and that you can get better.

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Shackles, Faith and Hope (Part Three)

“My meds are working. Schizophrenia is being untangled from the roots and downy fringe of my neurotransmitters. A new life awaits when I’m back in the world, seventy-two short hours from now. I’m excited. I’m scared. But I’m hopeful. I guess that’s as much as I can ask for, as I bring change 2 my very own mind.”

Author’s Note:

In January 2016 I suffered a bout of psychosis on par with that of my earliest breakdowns. Due to self-stigma I tried to present as “normal”, but this particular experience led to consequences which required emergency services and inpatient care.

This three-part series is meant to illustrate my state of mind at the time. Any misperceptions during my stay were due to the symptoms of my disorder. I mean to cast no aspersions. Each individual responsible for my care did their job to the best of their abilities. I am grateful for their kindness, and have the utmost respect for them and their profession. ~HBJ

[illustration © 2016 by Anna Grace] ____________________

 

anna's art CROPPEDThe first things to go were my belt and shoelaces. I was issued a pair of scrubs because my sweatpants had a drawstring. My scarf, floss, and chain wallet were next—everything stuffed into plastic bags, then off to a locked cubby. I didn’t question why; the answer was obvious. I was here because I’d tried to kill myself. It was that simple. Whatever one’s diagnosis, when the choice is made to attempt suicide and that path gets interrupted, there is still a risk, sometimes a very strong risk, that the individual will try again.

The rooms were outfitted with video cameras. Lights and vertical blinds were controlled from the outside. Total privacy was a distant notion, but all the better, because—in my case at least—I knew deep down that I had no desire to die. I was following information given to me by Command Voices, the worst of my symptoms flared past super nova. A dark star named Dead Henry. So leave the shades up and the cameras on, thank you very much. Take away any nasty objects. I’m happy to have to ask for my floss. At least when it’s time for dental hygiene I can be that much more aware of its actual purpose in my life.

What was different right away was the attention the staff paid to every detail about me, my disorder, and how to work safely within the guidelines of the ward. I felt understood and respected. Cared for. Because I hadn’t slept I was issued a sleep aid. As I read my pamphlet on the rules of the wing, the previous day started melting away. The smart-bed whirred and contoured to my body. I hugged Murphy up and welcomed sweet dreams.

Next morning, a shower—my first in two weeks, with liquid soap and clean towels. The soothing heat of indoor rain brought comfort and tears of release as I washed away the days. How had it come to this, I wondered? How did the Voices manage to break through my resiliency? Ultimately, it didn’t matter. I was here now. I was safe. I could start to heal, maybe find the me that I had lost.

I asked a nurse for a journal and she offered me three colors. I chose hot pink, a color I associate with new beginnings.

From that journal then, chronologically, my story:

“Today was my first day on the ward. Ironically, it was two years ago to the date that I tried to starve myself to death and wound up in the ER. Déjà vu much? Anyway, I avoided being sent to inpatient back then by lying to the staff psychiatrist. I went home instead because I was afraid to be where I find myself now—except that where I am right now is superior in focus, purpose, and action to any step I have ever taken for my mental health.”

“My meds are being gradually increased. At first they make me feel a little weird, like drinking one cocktail and getting the effect of six. Thank heaven we have coffee!”

“I spoke with our psychiatrist who explained that the side effects of my particular meds can include sleepiness, blurred vision, increased weight, and in rare cases, tardive dyskinesia [involuntary, repetitive movements]. Let’s pray that doesn’t happen.”

“It hurts so much to see how much of ME has been lost inside schizophrenia. This—this hospital stay—is how I get my life back and reboot the possibilities of love and art in my every day. I feel hopeful now, though I’m a bit apprehensive with every increase in the dosage of my anti- psychotic medication…but then I do have schizophrenia. Tomorrow is a new day.”

“It took ninety minutes to make my bed this morning because I couldn’t find myself. Literally. Where am I? If I check with my Feelings Chart, then I’m fragile, ashamed, confused and frightened. I can’t concentrate. There is a lack of gravity-to-reality ratio. Looks like I might be here longer than anticipated. In the meantime I just want to get better.”

“Mood on the ward this morning is somber; two of our favorite mates are being discharged after lunch. Their integrity and humility are unparalleled. Their traits mirror our growing sense of community, family, and self- expression.”

“Five of us were walking in the courtyard this afternoon when I got a text from my sister, Joanne. It made me so happy that I started to cry. The group wrapped their arms around me and we laughed and cried together. My broken mind is getting some help, and so is my broken soul.”

“I am not real—the Voices keep saying that. Too many signals to track. It’s overwhelming. I feel like I’m being pulled apart. I still think I want to end myself, but at the same time, I don’t. I told everyone about this at Group Therapy this morning. I am not real. I’m not real at all.”

“I’m running on fumes. Three hours sleep. Stayed up counting bricks in the courtyard at dawn. Thinking a lot about self-harm and what it really implies.”

“Took a long, hot shower, put on my Batman yoga pants, and read some terrific information from my hospital packet on how to plan your day, how to be assertive, how to stretch, and how to BREATHE. Presented in such a way that I felt like I was in Group; really helped me feel connected. Wow— imagine that—this schizophrenic actually made friends! This is all new territory. Such a gift! I’ve come to know these people as my ‘family’ of sorts, each with their own unique perspectives and diagnoses.”

“Doc’s increasing the risperidone tonight and augmenting it with sertraline to help me with my anxiety long-term. Suicidal thoughts are still slightly present, but despite this, I have a good feeling about the path I’m on.”

“My meds are working. Schizophrenia is being untangled from the roots and downy fringe of my neurotransmitters. A new life awaits when I’m back in the world, seventy-two short hours from now. I’m excited. I’m scared. But I’m hopeful. I guess that’s as much as I can ask for, as I bring change 2 my very own mind.”

On the day of my discharge, one of the patients had drawn me a going away card. She illustrated her response to what I’d shared in Group about my Voices telling me that I was not real. The lead nurse pushed the buzzer to unlock the main door, and as I stepped out into the corridor, the artist handed me her gift. Four simple words, the meaning of hope: “You are not nothing.”

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The Social Contribution Complex by Davs

What I don’t think anyone really understands. My life right now, is at risk every thirty days. I take pills that have literal killer withdrawals. When my pharmacy has a glitch I’m teetering on an emotional wire. Today, for example… Oh, this is just something that happens without explanation or known reason other than the magic words: side effects. My tongue, and my shoulders to chest, and fingertips.. just roll a numbing sensation through me.

n copyHere I am. Almost 33, mother of two children without custody, art maker with one hell of an unorganized, tumultuous, self destructive tendency. Being a thirty something. Settle down time? Find myself? Just keep on trucking? WTF. I’ve not been to school since the ninth grade.

I used to harp on myself for being a barnacle on society. I’m the statistic. I’m the one the GOP complains about. I’m Daniel Desario; James Franco’s character on Freaks and Geeks. A loser.

But what if I’m not? 21 years ago I was diagnosed with bipolar and spent my entire teenage career on probation. I was a walking time bomb. In my twenties I was on autopilot in a Kamikaze. After having my second child I did some serious trial and error until my doctor I found the perfect psych prescription cocktail and I’ve taken it with the dedication of a toothpick sculptor ever since.

That’s the thing. What I don’t think anyone really understands. My life right now, is at risk every thirty days. I take pills that have literal killer withdrawals. When my pharmacy has a glitch I’m teetering on an emotional wire. Today, for example… Oh, this is just something that happens without explanation or known reason other than the magic words: side effects. My tongue, and my shoulders to chest, and fingertips.. just roll a numbing sensation through me.

I do take pills to help with the side effects of my psych meds, that also have side effects. I do this. I do it because I came to a point in life where everyone that truly knows and loves me gave me the ultimatum, get help for my illness or lose their support.

I’m an artist. I rarely make money, lately I’ve used my art to barter goods. I’m poor. I don’t have the ability to hold down a job. I need support in one way or another, always emotional.

So many hours I spend wondering if I could hack weening off my meds, what would I be like? As temperamental as before? Out of order? Would I slink into the night, find a needle and pass out in a gutter somewhere? I’ve been there. In the gutter. I’ve been the hitchhiker in the rain at night without a clue as to what direction was home. Chronic bronchitis. Chuck Taylor’s molded to my feet after weeks of never taking them off. Sleeping under a bridge. Endless cups of coffee bought up with nickels and dimes just to be inside some place warm.

People who don’t know all the chapters in my story can’t fathom my illness. I clean up well. I know how to smile. People who think they understand my illness encourage me to kick the psych meds and whole heartedly believe I can navigate my illness intuitively. People think I was born yesterday, for who could be so naive as to go through the shit storm of hassle it is to take a multitude of medication to Just control an unruly temperament… Just stop being moody.

Ah, shit… My friends. If only you’d been there.

I may not be growing a community garden. I may not be organizing food not bombs picnics or discovering cures to disease. But god dammed if I can’t say with confidence that I contribute to society everyday. Morning and night. With each pill I swallow, trust me, I contribute.

(Art by Davs on Etsy)

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Shackles, Faith and Hope (Part Two)

The day wore on. I think the label read, “Caution: May Cause Drowsiness.” More like slow-motion ennui wrapped in sofa cushion batting. Sit. Stand. Tuck in the sheet. Fluff the pillow. If I’d had a light switch on my side of the door, I’d’ve been flicking it on and off for something creative to do.

Author’s Note:

In January 2016 I suffered a bout of psychosis on par with that of my earliest breakdowns. Due to self-stigma I tried to present as “normal”, but this particular experience led to consequences which required emergency services and inpatient care.

This three-part series is meant to illustrate my state of mind at the time. Any misperceptions during my stay were due to the symptoms of my disorder. I mean to cast no aspersions. Each individual responsible for my care did their job to the best of their abilities. I am grateful for their kindness, and have the utmost respect for them and their profession. ~HBJ

____________________

rusty-keys CROPPEDNot sleeping for two days was taking its toll. The clock on the wall of my cell let me see the start of three. Five a.m.—the tenth hour of my stay, and the fourth since the restraints were removed and I was wheeled down to this holding area.

Triage was a memory now, replaced by silence punctuated by screams from patients lodged in equally tiny quarters. Windowless rooms, painted gray, the color of fog, of blandness and mire. My eyes felt brittle and burnt from crying. Suddenly the door opened, and light from the hallway poured into my room. A woman introduced herself as the staff psychiatrist. I was on my last rinse through the sorrow of psychosis when she asked me how I was doing. I thought the waterworks had dried up. I was wrong.

Tears flowed as I poured my story out to her. Demons, stolen children, cannibalism, Good and Evil. No food, no sleep, the fear of lost teeth. Rush hour hit-and-run, David Bowie’s murder—I couldn’t stop sobbing for the stories, image after image tumbling out of my mouth like so many bees and buckshot—the Mad Hatter on freon, trapped in a razored cage.

She asked if I’d been hearing voices. “Yes,” I replied.

“And what do they say?”

I answered without emotion, repeating sums on a math quiz. “That I killed David Bowie for stealing my thoughts. That I’m not real. That I’d be doing everyone a favor by killing myself.” Hollow. Empty. Still willing to die.

She tried not to cry along, but something struck a chord. Once composed, she asked if I’d be amenable to medication. I told her that I’d been on a very low dose of lorazepam for the better part of a year and had grown accustomed to fighting anxiety through its effects, however subtle. She suggested something stronger, a regimen of clonazepam and risperidone. I was so worn down from fighting to keep one toe in the pool of reality that I acquiesced and dove all-in. I heard my teddy bear Murphy breathe a sigh of relief. “It’s about time,” he whispered, in his Paddington best.

An hour later an orderly came around. I stood up for the first time since being admitted and almost lost my knees to the woozy. The pills went down like dreams for dessert, and I went back to bed and waited. For what, I wasn’t sure. More waiting, I suppose. Not napping. How could I? That hallway light was brighter than the sun, piercing as sharply as the wailing screams of the patients yet unmedicated.

No sleep had become the New Sleep. I’d reached that point where I didn’t care. Not about sleep, or screams, or my breakfast of cold pancakes and juice-box grapeness. By this time, my teddy sat at the edge of the bed with me, both of us child-sized, befitting the mushrooms Alice wasn’t touching. He turned his head to the ceiling and stared at a faded poster of a garden, some ersatz attempt at brightening the room. “Real flowers smell better,” he said. I told him real pancakes didn’t taste like wax.

The day wore on. I think the label read, “Caution: May Cause Drowsiness.” More like slow-motion ennui wrapped in sofa cushion batting. Sit. Stand. Tuck in the sheet. Fluff the pillow. If I’d had a light switch on my side of the door, I’d’ve been flicking it on and off for something creative to do.

“Lunch” came. A lukewarm hotdog with a ketchup pack and room temperature chocolate milk. So this was noon, hour seventeen. Shackled by boredom and time. A clock that didn’t tick. Silence punctuated by suppression. The smell of the food permeated the room, the only sensory input besides the now occasional post-med hollering.

There was a knock at my door. A giant of a man, mustachioed and ponytailed, like some Wild West hippie Santa Claus in blue scrubs and sneakers.

“How’s our quietest patient?” he asked. “Still not sleeping? I figured that Klonopin would’ve knocked you out by now.” More smiles and big-heartedness from the professionals on this floor, miles away from the Viewless Garden, save for that pointless poster. “Well, young man, you’ve got a call. You’ll have to come down the hall to take it. Phone’s just across from the nurses station.”

I followed Sgt. Pepper down a mile or two of grayness. How far away was my bear? “Can I go back and get Murphy?”

“Of course you can. We’ll keep your therapist occupied.”

My therapist! On the phone! The outside world coming to me through the bygone magic of the rotary dial. Big, blue, hanging on the wall like overripe heavy metal fruit. Was it made of steel, this ancient technology? Apes at the Monolith threw shinbones and shouted. Murph dangled from one hand, the other cradled the receiver.

“Henry, hi! How are you doing?”

I couldn’t believe it. I was hearing her voice. Hour twenty-two, and for a few short minutes I wasn’t alone. I answered all blank, though—hollow, not real. Still pondering death. “I have Murphy,” I guessed.

“Are you in good hands?”

“I have a Beatle for my nurse.”

“Well, I have good news for you. They say they’re going to release you soon—a bed freed up at another hospital.” And that’s where I left her as I drifted toward every scentless flower in every senseless painting taped to every seldom ceiling in every cell in this ward. “You’ll be staying for seven to ten days and receive around-the-clock care. They’ve been working on this while you napped.”

“Not napping. Just me and Murph and some terrible food smell.” Then I whispered, “There are people in here like the Joker and Harley Quinn and they keep yelling and scaring me with all the cartoon threats, but I sorta don’t care because I have drugs in me now.”

The nurses signaled to me to finish, so I just hung up and walked back to my cell, Murphy slung over my shoulder like a sack of raggedy bear. Two hours later we’d be wheeled off the wing and onto a prayer, in an ambulance across town to the next facility, my third stop in the longest day of my life. I’d found faith where there was none, and hope would be mine. I hugged my bear and allowed myself to sleep.

[to be continued]

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Compliancy

While going over my medication list with a nurse recently, I was told: “you seem great”! “Gee, thanks”, I thought sarcastically. Why wouldn’t I be after all? I’ve been managing my mental illness for going on twenty years now.

Compliancy 2 IMG_1994Upon being diagnosed with Bipolar 1 disorder, I was prescribed a life-long regime of medication and talk therapy.

Swallowing this prison sentence was difficult at the time. But accepting the best medication cocktail from my dedicated psychiatrist — and learning life skills for re-entering the world from my therapist, means demons now rest.

I don’t miss mania, which I understand is the common rationale for dropping ones’ medication regime. My manic self is someone I don’t want to revisit. At baseline, I have a fairly hypomanic -like personality, so why not adjust my sails to who I am as Kate – not Kate with an untreatable disease?

I’m compliant, which means I effectively manage my bipolar illness as prescribed. Today, this calls for monthly therapy sessions and managing five medications.

First diagnosed, I avoided the articles and publications; put aside the discussions about side effects and whom to trust. I threw myself at the mercy of my medical team and supportive family. Many years later, I’m alive, healthy and thriving.

Like most, I have anxiety, stress and emotional reactions — for me, these are baseline personality traits I know well and manage without much fuss.

Clinicians of all brands read diagnoses and of course make innocent presumptions. While going over my medication list with a nurse recently, I was told: “you seem great”! “Gee, thanks”, I thought sarcastically. Why wouldn’t I be after all? I’ve been managing my mental illness for going on twenty years now. While it does make me smile with pride hearing affirming words, it also helps better highlight what people “see” when they hear or read “mental illness”. Lately I feel I’m not the image people seem to picture, which makes me less angry for myself and more defensive for the bipolar “norm” clinicians must see.

The overarching health care system is too often an art to manage. I often feel guilty for my wellness as many go without treatment for ill-bred reasons. Part stigma — part medical system — and access to mental health care unfortunately becomes a chore that requires reams of documentation to obtain. Mental illness is an illness of the brain and should thereby be treated no differently than someone with a “physical” brain illness.

If you manage a mental health illness, I urge you to be patient and understand why many often have an ill understanding of mental health — and how it can often be well treated with compliancy.

One step at a time – subtly and when appropriate – it’s important to educate and help eradicate stigma. There’s nothing more powerful than telling our stories and putting the “picture” of your mental illness in better light.

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Shackles, Faith and Hope (Part One)

In January 2016 I suffered a bout of psychosis on par with that of my earliest breakdowns. Due to self-stigma I tried to present as “normal”, but this particular experience led to consequences which required emergency services and inpatient care. This three-part series is meant to illustrate my state of mind at the time. Any misperceptions during my stay were due to the symptoms of my disorder. I mean to cast no aspersions. Each individual responsible for my care did their job to the best of their abilities. I am grateful for their kindness, and have the utmost respect for them and their profession. ~HBJ

daisy-chain TUNEDAuthors Note:

In January 2016 I suffered a bout of psychosis on par with that of my earliest breakdowns. Due to self-stigma I tried to present as “normal”, but this particular experience led to consequences which required emergency services and inpatient care.

This three-part series is meant to illustrate my state of mind at the time. Any misperceptions during my stay were due to the symptoms of my disorder. I mean to cast no aspersions. Each individual responsible for my care did their job to the best of their abilities. I am grateful for their kindness, and have the utmost respect for them and their profession. ~HBJ

____________________

My “second sister” Amy held my left hand and wrist, while our friend Laura cradled my right foot and ankle. They were trying to hide the steel brackets locked to my limbs. My best friend Jeff stood at the corner of the bed, blocking my view of the proceedings behind him. My free hand clutched my teddy bear Murphy tightly to my chest. The four corners of my body’s map were in the care of my closest friends, but my mind was lost to terror. What had I done wrong, and why was I being treated like a prisoner?

Triage was in the wing known as Garden View, the irony being that there were no windows. No rooms were available either. My bed sat against the wall in the crossway. Ahead of me were drunks and addicts; in my fog of paranoia I considered them “free” whereas I was the one in restraints—the one who voluntarily committed himself after a suicide attempt in the vortex of psychosis.

I was informed that the leather straps and manacles were for my own good. I found nothing good about them. After all, I’d brought harm to myself, not to another person.

Devils had taunted me with extreme prejudice, strewing messages of death along my path. It wasn’t raining, but the deluge was incessant, like the command Voices surrounding me. I’d finally been located by their Master. The cowards had tracked me for years, and now they had me cornered.

My heart wouldn’t stop racing, but it wanted to. Stop, I mean to say. Dead. Why? Because there, in bright orange spray paint, was a message from the Devil Himself, numbers in a pattern that signified capture. My only out was to bite the capsule. Find a way to die and save humanity. It was all up to me. Savior, madman, martyr, spy.

Three months earlier in October I’d begun preparations for my battle. I started counting calories again, losing as much weight as quickly as possible. My food journal was filled to the margins with annotations on my daily insights, twisted now as I know them to have been.

“11/25/15:
 I suck at everything in my useless life. I am forced to start this diet plan. I know for certain that I need to lose twenty pounds or more. Being crazy and unwanted doesn’t help the life expectancy much, but there’s nothing I can do about that.”

“01/08/16:
 After blowing it for a week, we move back to the Real Deal, starting today. Food’s in the trash—threw it all out. Lousy way to spend money, but a good lesson.”

“01/13/16:
 I’m struggling with God. There is no love for me. I am completely alone.”

I’d lost eighteen pounds in under two weeks. I was eating one banana per day. Ninety calories. Black coffee. Nothing else. That’s how the monsters found me: scattered, gaunt, out in the street, taunting four lanes of rush hour traffic. I was begging them to run me down, to end me, to take away the pain of being unloved.

Time had come to make the move. We had a plan, a phone-tree, a team. But who do I call, and what do I say? Will my friends try to keep me from starving? Will they call the police because I’m trying to murder myself? No, they won’t. The Voices tell me that. They also tell me that my life is worthless. The garage sale total of my belongings wouldn’t pay for the funeral.

Instinctively, I hit the crisis line speed-dial. I got my therapist on board. Runes and demons, traffic, shouting. One banana a day. No food. No love.

Amy and Laura were soon in the loop. We met at my apartment, trashed as it was, and while they took instructions from my therapist over speakerphone, I stuffed my backpack with essentials: toothbrush, socks and briefs, Pikachu tee. I’d worn the same ratty, moth-eaten sweater for days. I hadn’t bathed in as long, either. I was flossing compulsively, my last shred of hygiene in tatters and blood. I don’t know how I got to the hospital, but Jeff was waiting for me there.

“I’m not trying to snake your girlfriend,” I said. “I’m sorry. My thoughts aren’t my own. Everyone is trying to steal my brain.”

I went through the security gate with my pants half-down because they took my belt, my glasses, anything metal, even not metal, my shoes. They put everything in a bag. All I could do was clutch my bear and sob into Jeff’s parka. “In Chicago it would be snowing, but I don’t have pumpkin bread. I’m sorry. Please don’t be mad at me.” He wasn’t.

He walked me to the admissions desk. I told the intern that I wanted to commit myself. When he asked me why, I said, “I want to die. I killed David Bowie. I need to be punished for it. I’m not thin enough to fight ogres. All the children are dead because of me.”

I was admitted, and, despite advocating for myself, my body was chained to a bed because I was considered dangerous. Because of my actions? No. There’s no crime in holding a teddy bear. My appearance? Possibly. I didn’t smell right. Maybe not bathing is an offense worth hobbling a smallish man. Or maybe it was the name of my diagnosis —schizophrenia—that carried with it the justification for restraints. It didn’t matter. In my panicked state of confusion and fear I believed—for those six hours I lay shackled to a bed—that I was considered a liability in a system which valued the worth of insurance over the dignity of a patient.

When the cuffs came off, I was transferred to a holding cell in what used to be the asylum decades ago: an eight-by-twelve windowless room with gray padded walls and a one-handled door. The chains were gone but I was strapped to the gloom. Down the corridor, deep in their own madness, patients wailed and screamed for release. I felt alone, terrified, fragile and small. Twelve hours later I would experience a very different sort of treatment, but for now my life was colorless, flat, and empty. I needed hope when there was none, faith when I’d lost mine. I let Murphy soak up my tears.

[to be continued]

 

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We Need To Talk

When I think of those who battle mental disorders I think of the word 'fly'. If you watch a bird in the sky they have pure freedom. That freedom is key and is what fly means to me. The ability to have pure freedom to be ourselves in a world that is constantly trying to change us. The ability to not be perfect and express it. That is my goal in sharing my story. I am not afraid to show my flaws or ashamed of my past. I want others to be able to tell their stories without fear or judgment.

Jolene Feb 2016 photo image1To explain my story I have to go back to the beginning. I was a young teenage girl who trusted and believed in people, then one day that was taken away. I never asked or gave permission to the person, who took my innocence away, but they did and I had to live with the consequences of that. That moment led to my body being inhabited by major depression and posttraumatic stress disorder for many years. They became the friends that I leaned on and led me down many dark paths.

I am a rape survivor. My journey started over 20 years ago. I write about this openly here to be a voice for those who have survived similar events and who may still be struggling to move forward. Recent statistics have shown that 1 out of every 6 women in the United States will experience a sexual violence act in their lifetime. It is also known that statistically these women are more likely to suffer from PTSD and contemplate suicide. That is why I write about this topic today. I have walked in those shoes and recall the early years after this happened. My brain was riddled with PTSD and depression. I would attempt to leave the house with a smile, but I hated myself. I felt dirty and ashamed. Often I would feel like people were looking at me and judging or looking at me and thinking “oh, that poor girl”, even if they were people who did not know what happened or me.   Nightmares haunted me every night. I often tell people the dreams of PTSD remind me of the old Nightmare on Elm Street movies. In that movie the evil Freddy chases people down and you cannot escape him. PTSD dreams are like that. Everything you experienced and saw returns in your dreams every night, to the point you wake-up in a cold sweat and afraid. I remember many times waking up and feeling like I was suffocating, like someone was standing over me. The sheets would be pulled over my head and I would slowly count to ten until my brain adjusted to my environment. One, two, three, just breath, keep breathing, it is not real…those were my calming words. When I got into my 20’s I was lost for quite a few years and if it had not been for two amazing college friends I do not know how I would have made it so far away from my family. I went to college twenty-four hours away from my home. I wanted to be away from my past and around people who did not know about the “poor little girl”. My PTSD brain thought I would cope better hidden away, but that is far from the truth. The thing with mental health disorders is that they follow you wherever you go and you cannot escape them. No, you have to face them head on. I got into some good relationships with men, but if they were nice I would often ruin it thinking that I did not deserve a kind man. I was tainted and my insides were disgusting. Going out to the clubs, dancing, and having a drink in my hand was the one time I could numb my brain. I wanted to be numb. I wanted to forget. I wanted the night sweats and the nightmares to go away. Relationships with men were difficult for me. Trust did not come easily. Allowing people to get close to me or intimate was an up and down journey. Sometimes it was simply easier to be alone.

That experience also led to the opportunities I have now, where I get to talk about my past journey while helping others and working to end the stigma that surrounds mental health disorders. I often refer to PTSD and depression as my dark friends. When I was with them my mind was not my own and I often felt lost. Many assume that those who have mental health disorders can simply put a smile on and embrace the day, but that is far from the truth. There were many days that I felt like I was having outer body experiences. I was not in control of my thoughts or actions because everything inside of my brain was foggy and distorted, yet deep inside I was screaming to be free.  From the outside I would watch, as I would push people away to try to keep them safe, for my pain was not meant to be theirs too. I would watch as those around me walked away because they could not handle my mood or watched as those I loved looked at me with faces full of worry. On my journey I had three suicide attempts. The first two were my distorted mind taking a bunch of anti-depressants thinking that would lead me back to happiness and make the nightmares disappear. The last one took place 12 years ago and was me truly trying to escape my depression and PTSD. I was so tired of fighting, hurting, and making those around me suffer (my distorted mind thought they were suffering). That final attempt was my life changer. It opened the door to my mind and I came to realize that in the end I have to learn to love myself. Thanks to those who support me I did just that. I fought hard and came to realize along the way that my journey was meant to be. It gave me the ability to be here and to educate others. I have worked in the medical field for 18 years. I know the stigma that exists out there well. It is for this reason I wish to work with those who battle the same battles I once did, when I am done Grad School, by working for the VA.

When I think of those who battle mental disorders I think of the word ‘fly’. If you watch a bird in the sky they have pure freedom. That freedom is key and is what fly means to me. The ability to have pure freedom to be ourselves in a world that is constantly trying to change us.   The ability to not be perfect and express it. That is my goal in sharing my story. I am not afraid to show my flaws or ashamed of my past. I want others to be able to tell their stories without fear or judgment. Mental health disorders are real and it is time for the stigma to end. Suicide is not selfish, it is a mind distorted by thoughts that those who have not walked in such shoes will not understand. If you struggle with a mental illness do not be afraid to talk. If you know someone who struggles with mental illness ask him or her questions and talk to them like you do everyone else. Together we can end the stigma. We can all learn to fly together. My name is Jolene and I am a PTSD, major depression, and rape survivor. Watch me soar!! No one is alone. Rape is not a dirty word. It is time to talk.

 

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Who’s Calling the Shots . . . (or Capsules . . . or Tablets)?

Taking the time to listen to my daughter empowered her to be an active part of her treatment team. She learned that she could say ‘hey, I don’t like the way I feel on this medication, can we try something else’? She learned that by explaining to her family and to her psychiatrist what she was experiencing we could all better support her in our common goal of wellness and stability.

Medications have been a part of our family’s life for well over a decade. When my daughter’s first psychiatrist first suggested adding medication to the two years of therapy we’d already invested, I panicked. Medications?? In an 8-year old child?? Images of a catatonic, zombie like little girl flooded my mind. Even though our family’s professions gave us considerable knowledge and access to information about psychiatric medications, therapy and treatment options, none of that seemed to matter when the patient was my child.

Ultimately, we did go down the medication path taking on the role of armchair quarterbacks in the world of psychiatry. With a “if you can’t beat ‘em, join ‘em” mentality we researched, questioned, observed, documented and gobbled up every study, news article, anecdotal story and package insert that we could get our hands on. Obsessive? You bet! Over the top? Definitely. Would I do it all again? Probably. Knowledge is power and until my children could advocate for themselves, it was my responsibility as a parent to be the best advocate I could possibly be. While there is no question that a lay person presuming to know more than the professional could be off-putting, using knowledge to be an active player in the decision making process was generally welcomed.

Fairly early on, my daughter began to weigh in the medication decisions. Initially, her input took the form of refusing her meds. ‘Forgetting’ to take them was followed closely by flushing them down the toilet (capsules float so the clues were pretty obvious). The protective (aka controlling) mom in me wanted to confront the issue head on with consequences and strict rules of psych ward like monitoring.

Thankfully, our (second and current) psychiatrist had far more experience and a much more realistic approach. He taught me two valuable lessons. 1) Listen to the patient, no matter their age. They have valuable input that cannot be found in any research article or PDR (Physician’s Desk Reference). 2) Involve the patient in the decision making process. What this meant for us was taking the time to find out WHY. Why was our daughter avoiding her medications? Was it due to side effects? Stigma of feeling like she was the only 5th grader taking meds? Anger or rebellion over having a chronic illness that was shrouded in secrecy?

Taking the time to listen to my daughter empowered her to be an active part of her treatment team. She learned that she could say ‘hey, I don’t like the way I feel on this medication, can we try something else’? She learned that by explaining to her family and to her psychiatrist what she was experiencing we could all better support her in our common goal of wellness and stability.

Years later we all learned another valuable lesson – it takes a village. We are all stakeholders and we all bring different perspectives to the table when it comes to an effective treatment plan. The patient becomes more and more independent when it comes to daily care and self-management. That’s what we’ve all been working towards. Parents shouldn’t hover over their child in high school and beyond – it’s not healthy for anyone. Yes, there are times where things fall apart or the progression of the illness interferes with building that foundation of self-care. But in general, as our children get older, we as parents get to step back and let go a bit.

The tricky thing with mental illness (and this can hold true for other chronic illnesses as well) is that it can mess with one’s perspective and judgment. Feelings, perceptions, relationships can all become distorted by the lenses of anxiety, depression, mania, compulsions. Our illness can convince us that we don’t have an illness (ask any recovering alcoholic about that one!). Or, during a long stretch of stability (I refer to this as ‘remission’) we can question our need for medications because we feel fine. Our psychiatrist often reminds us that stability often indicates that the meds are working rather than being an indicator that we no longer need them.

So when our now adult child decides (with or without our knowledge) to go off of medication, what do we as parents do? Or not do? First, refrain from hitting the panic button. Yes, if our loved one goes off the rails we are going to be impacted. Yes, we are afraid of history repeating itself. But blowing up or demanding to take control will likely only serve to shut down a crucial line of communication. Second, ask questions. Do some research. Find out WHY the decision was made. Is it because of side effects? Peer pressure? Expense? Find out HOW the decision was made. Were members of the treatment team involved? Was the decision well thought out or done in a moment of impulse? Is there a safety plan if things start heading south? Under what circumstances would meds be restarted?

I am grateful to our psychiatrist for creating the foundation many years ago that has helped us to navigate a variety of medication scenarios. I am grateful for the years of experience, ‘on the job training’ and even the really difficult times. I’m not always comfortable with the decisions made by my (adult) children. I’d be lying if I said I don’t worry. I’ll always worry to some degree; these are my children no matter their age. But I’m okay with them calling the shots.

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My Changing Mind

I “came out” of the bipolar closet and publicly told my story. After 18 years of fear and shame, this was a distinct game changer. Letting go of stigma has helped me realize the magnitude of my fear since being diagnosed in 1997. After forgiving myself for managing my diagnoses of Bipolar I, my dignity has been fortified with a sense of pride, not self-loathing.

Kate selfieBlogging and serving as an ambassador for the Bring Change 2 Mind community has been an honor and a privilege. I am more than thankful for this evolving transformation of growth and education. The experience has changed my life—and mind — for the better. Here’s a new year’s reflection on my advocacy thus far:

I “came out” of the bipolar closet and publicly told my story. After 18 years of fear and shame, this was a distinct game changer. Letting go of stigma has helped me realize the magnitude of my fear since being diagnosed in 1997. After forgiving myself for managing my diagnoses of Bipolar I, my dignity has been fortified with a sense of pride, not self-loathing.

Shame is unnecessary. In fact, I’m humbled by and proud of the hard work and support I’ve garnered to live my life – a story I never dreamed possible. My loving husband, a healthy, sweet son and many supportive family and friends both near and far bolster my spirits and provide confidence in what I can do if I continue maintaining complacency and focus. Upon telling my story, I felt like a healthy dose of contentment whisked away insecurities and anxieties. Liberation from managing my illness with acute concern and fear has been extraordinarily rewarding. Especially as I get older I have grown to understand that living life to the fullest is more important than ever before. One in four people manage a mental health diagnoses. Seriously – there’s no reason to carry a burden of shame.

My diagnoses doesn’t own me. I live at “baseline” – which is “me”. If you don’t care for me, that’s cool. But I know it’s me, not my disorder at work, and that’s refreshing and helpful to understand. Knowing I no longer need to be tethered or defined by my diagnoses has opened many doors and bolstered my integrity. My life successes and how I manage the pitfalls – for better or worse — keeps me standing strong. To stop and know the voices are at bay — and that my complete landscape is within my well defined, healthful reality makes everything that much easier to manage.

Experiencing emotion is okay. My long bout with acute Bipolar made me fearful to be myself – someone who experiences the same range of emotion most people know. I now allow myself anger, fear and sadness, joy – and even euphoria and faith-filled hope. Being labeled with a mood disorder and the shame therein often keeps people, it seems, from allowing their own humanity. For example, after a long history of “faking it” so people wouldn’t see me as I saw myself (awkward and fearful of my plight), coming out and being me – complete with foibles and skills; humor and anger and sadness and anxiety — didn’t and still doesn’t mean I’m off the charts or that people need to read me as symptomatic. Experiencing full blown mania is something I know and can still keenly recall. Reverting to that horrifying place is an option I’m prepared for, but hope will never happen again.

From my perspective – a patient’s perspective — this is one of the most difficult concepts to grasp while recovering from a mental health diagnoses. Sometimes during a stressful moment I’ll even say to myself – “you’re reacting within your range of normal, Kate. It’s okay to trust your instincts and thrive”.

But going off the charts can be a concern and something to be observed by both myself and my support system. When my family and I moved to a new city after having been established in our life-long community, managing new practitioners, for example, became a personal trial. Obviously everyone’s care is different. For me, letting go of comparing my Virginia practitioners to those I worked with for almost two decades in Massachusetts has enabled me to listen and learn. Considering our massive transition to Virginia, I’m setting goals and moving forward. I continue to manage my diagnoses by following a well-established medication and talk therapy regime. It’s a quality cornerstone to maintaining a place where “recovering” as opposed to “symptomatic” consistently bubbles to the top. My husband and life partner Christopher has never known me symptomatic. His observations and patient reassurance brings me solace and comfort.

Understanding the bipolar landscape “beyond” me has been both gratifying and extraordinarily trying and scary as well. I’ve grown to learn how a patient willing to recover can become squelched by the wet blanket that is the public health system. The fight to overcome mental illness can be overwhelming on disparate levels. Once without insurance and battling the system to obtain my medications and treatment, I realized those in a less supported, learned environments may not be able to fight the fight. How is a member of the homeless community supposed to get their rapid cycling under control while hungry, tired and most likely suffering from myriad other ailments? How can you access the computerized health system from a tent in woods? A few baby steps have been taken, but our legislators should be educated to better understand reality as they build the prospects of a public health care system.

My advocacy work is often daunting but extremely rewarding. I’m proud to tell anyone who asks why I advocate for mental health awareness and the end of stigma. As someone close once noted: “You’ve found your passion. This is your calling”.

For all these reasons and much more, my heart is filled with anticipation and hope. There’s much to learn and much to do.

Let’s Bring Change 2 Mind together.

 

 

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Rocket Man

It’s in the symptomatic nature of my disorder that I find myself wondering why isolation feels like safety to me, when intimacy is the experience which I crave the most. The contradiction is infuriating.

rocketmanThere’s a newspaper photo of me, age ten, in a makeshift astronaut’s outfit: a Tinkertoy antennae glued to a plastic fishbowl helmet, and a cereal box “jet pack” pony-harnessed to my shoulders. In my hand is a letter from one of NASA’s bravest. We’d corresponded; the paper smelled a story. My dad told the reporter, “Henry might take off for space any day now,” an insight I wouldn’t possess until therapy helped me reframe it.

Six years ago this week, I received my diagnosis. I have schizophrenia. I lived my life untreated until recently—and every day of that life, I tried to blend in. All I ever wanted was to be like normal people.

I don’t feel that way today. I’d rather be accepted by the people I tried to be like because of who I am, not in spite of it. Attempting to blend is living a lie, and lying just won’t do. Rigorous honesty is better. Not easier, better.

Honesty doesn’t mean that I can say, “Your hat is ugly.” If I don’t find your hat to be the most appealing chapeau ever worn, it doesn’t matter. A hat’s a hat. If you like your hat, if you feel good when you wear it, then hold your head high. It’s your relationship to your hat that matters, not my opinion. Our preferences may differ. That’s not the issue. No one has the right to tell you that your taste in haberdashery sucks. “Your hat is ugly” is not an honest statement. It’s a lie. What is true is that your hat is your hat, capisce? Your hat, my opinion of it—not the same thing.

To address the Hat Issue from a position of honesty would be to recognize that clothing choices are a unique expression of self. Addressing that fact is the only place from which I can honestly speak. Not speak my mind speak, but open my mouth. If I don’t believe it’s a nice hat, I’m lying if I say I do. However, saying “That hat suits you,” acknowledges that you’ve made a choice integral to the person that you are. That’s the truth. Now we’re simpatico. No one gets hurt, everyone wins. This is the way honesty works.

As a person living with schizophrenia, making friends comes with a distinct set of challenges. There’s plenty of psych data to back that up. Is it alogia— my symptom defined by brief, empty replies—or flat affect, when my body language goes offline and emotional expression is absent or forgotten? I don’t have a clue. Ask the professionals. I just wanna connect.

It’s in the symptomatic nature of my disorder that I find myself wondering why isolation feels like safety to me, when intimacy is the experience which I crave the most. The contradiction is infuriating. How can I move when I’m painted onto myself? The simple answer? Just speak. But it’s not that easy. The brain and the heart are in two different countries, and neither of them have an app to translate the riddle. I brought a Marshall stack to Lilith Fair, so I’ll wing it unplugged. A cappella. Sotto voce. Quiet. Alone. Houston? I’m freezing up here.

It’s not worth the effort to keep up the lie.

I wear a necktie better than most. I keep myself physically fit. I can look in the mirror and say, “Hello, handsome,” but when I step out the door everything changes. My heart-rate skyrockets. I lock and unlock my door three times. I go back into my apartment—to the kitchen, the bedroom, stop, check the heater, the oven, the first of two locks, then the second. I turn counterclockwise on my way out the door, the micro-dance acting as confirmation that my place is secure, I can leave now, the Going Out Ritual is complete.

I walk a mile to the cafe, avoiding every house with a dog. The industrial area is scary, and I pray that my feet keep moving. Voices warn me of the dangers ahead, pausing only to sideswipe my confidence. When I’ve passed through the gauntlet to the parking lot maze to the front door to the counter with the menu and cookies, “Henry—good morning! What can I get you?” is my cue. Am I a blended drink, or an honest cuppa joe?

It’s the smile from my new friend that makes the monkeys stop. They can’t get in the door behind me, winged or not. There’s a stronger voice, a more stylish hat, and a handsomer image in the mirror of that smile: acceptance without self-stigma. It’s not a second-skin-comfortable jet pack yet, but I’ll grow into it.

 

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The Power of Intrusive Thoughts

When experiencing suicidal thoughts for the first time I can recall feeling an overwhelming sense of shame, guilt and weakness. I was ashamed of myself for not bearing the strength to end such thoughts, and I felt guilty for the fact that, despite how loved and lucky I was in comparison to many, it clearly still was not enough for me.

Sadly the topic of suicidal thoughts is still considered to be a taboo subject, as many sufferers, including myself, will often fear reprisals in the wake of their disclosure. Will they deem me to be crazy? Will they report me to a medical professional without my knowing?

When suicidal thoughts are disclosed within a medical setting protocol states that the professionals in question must first assess the risk you pose to yourself and to others. Do you self-harm? How often will you experience such thoughts? Have you ever made plans to take your own life? If so how? I cannot say that I have always been open and honest in my answers to the above because that would be a lie, but experience has provided me with a greater level of trust and confidence in order to do so. When experiencing suicidal thoughts for the first time I can recall feeling an overwhelming sense of shame, guilt and weakness. I was ashamed of myself for not bearing the strength to end such thoughts, and I felt guilty for the fact that, despite how loved and lucky I was in comparison to many, it clearly still was not enough for me. This, alongside my fear of being sectioned, consequently led to my clamming up when questioned. The truth was always on the tip of my tongue, but one look around that doctor’s office or counseling room was enough to remind me of their power and ability to have me admitted against my will, and, in my mind, scupper any future chances of both adopting and having my own biological children.

I have often said that, if sliced in two, my brain would bear hundreds of post it notes, detailing the often disturbing intrusive thoughts that will pass through my mind on a daily basis. While I may have told myself that I would be nothing but honest in my blog, this is the one topic that I am not willing to go into too much detail about. Maybe I am scared that it will increase their level of intensity, or maybe I am scared that, somehow, this blog will be seen by a medical professional and I will be handed a one way ticket to the psych ward. Whatever my reasons may be, the fact that both family and friends will be reading this blog is simply enough to make me withhold certain details about my mental wellbeing, as a whole.

I will question what the purpose of my being here is, I will think and believe that people would be better off without me because I am nothing more than a burden. I will often assume fetal position, tears streaming down my face as I question my worth as a person. This must be happening to me because I am a bad person, right? There must be a reason as to why all of those people from my past are getting on with their lives, settled down with families etc. while I am laid up on my sofa nursing yet another panic attack or depressive episode. There must be a reason as to why I have had to grieve for so many people in my twenty five years. At my lowest I even went so far as to plan my suicide *big gulp*. The difference here though is that I never actually acted on it as simply knowing the hurt that my passing would cause to those closest to me and that, one day, I may possibly have a family of my own and use my story to make a positive contribution to the mental health field, is what gives me the strength to rid such thoughts of their power, for now at least.

What I have learned is that you need to have faith in other people. While suicidal thoughts are not something that I will ever share freely, there are a few whom enable me to speak openly in a non – judgmental manner. I may not have yet mastered the art of opening up before I hit breaking point, but I am reassured that, with their help, guidance and strength, such thoughts will not break me.

Opening up to my brother about my own suicidal thoughts was one of the most challenging periods in my life, so far, but I am so pleased I did it. My brother could not be more understanding. He has joined relevant Facebook groups, read books and will regularly turn to his home therapist at work (he works in children’s services) for guidance and reassurance. It has taken time but I am now able to be honest with him when it comes to my thoughts – he will simply take it in his stride and talk me through my panic. When panic sets in he will make a joke to lighten the situation – this may not work for some, but then I have always had a very dry sense of humor. This is my way of taking back some of the power.

 

 

 

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Perspective

There’s always more work to be done, more stories to share and mysteries to solve. I’m not willing to lose this weird, wonderful world to my genetic encoding and environmental influences. One brain in one-hundred works like this. That’s nothing to be ashamed of. To the contrary—wouldn’t those odds be considered unique?

angel soloI had a sense that something was different. I closed my eyes and concentrated on my breath until I could hear it above the Christmas favorites playing in my headphones. I wanted the season in my body and soul. I wanted a miracle.

Sirens interrupted my breathing exercise. Lights—not the holiday kind, but the red and blue ones that signal distress—amplified the wail of emergency: a crisis across the lake. I sat alone in the concrete bleachers, tracking the firetruck, aid car, cruisers, and ambulance. I switched off my music and heard the whisper of winter in the pines. The din settled in the same spot where, two years ago, I attempted suicide during a major psychotic break.

From my vantage point in the treetop bleachers, four stories up, same pattern of lights. Same action through the mist. First Responders moving into formation, police in pairs on either side of the bench. It wasn’t a flashback. It wasn’t a dream. It was a gift from my disordered mind: a Möbius strip reminder of contextual continuity. The tail of one story and the birth of another.

My mind had gone so dark that the only resource I believed I had left was to stop the pain by stopping my life. Against all instincts, one last desperate move—I called my best friend.

He knew my symptoms: the empty replies, reduced body language, social withdrawal, isolation. He’d seen me unwashed and zombied-out from zero sleep and lack of food. We’d been to the ER for anxiety attacks based on delusions of reference and paranoia. When my behavior disrupted our friendship, he took it in stride, but he’d never seen this. Schizophrenia was winning. With a handful of trusted friends and professionals, he fought to bring me back.

In that moment I was afraid to trust anyone. Yet there I was, phone in hand, as if my plan to die had lost its allure, which it hadn’t. Psychosis had planted its flag in the heart of my mind. My friend hadn’t met this version of me; he knew another, a variation where I loved life despite the daily echoes of trauma, self-stigma, and fear.

As sirens signaled the response team’s approach, I panicked and cried that I wanted to die, that people in the park had been replaced by robots. The commanding officer spoke with intent. They wouldn’t allow me to kill myself. Though I posed no threat, I had a suicidal plan and was trapped in the delusion that I must terminate a robot masquerading as a friend.

Restraints would follow, as would anti-psychotics. I never knew why I agreed to their terms, until I sensed that someone was watching over me. The last thing I remember doing before they strapped me to that gurney was to look across the lake. I saw an angel in the pines, as high as the bleachers, four stories up in the winter mist.

I had a sense that something was different. I concentrated on my breath until I heard it above the medics. I watched the angel as my body left my soul. I sat in the bleachers watching the person belted to the stretcher watching me.

This was no longer a matter of perspective—it was a pivotal point. I was both on the bench and in the bleachers, looking to myself, safeguarding me. Time had passed and stayed. Days had gone, but not. The angel at the top of tree was me.

For now, and for as long as I can hold on to it, I am willing to believe that a brighter future is possible.

I’m learning to take care of myself. I’m taking chances and making new friends. Some of them have offered to be on my phone list, to be there for me when things go sideways. Not as a replacement for my treatment plan, but as a necessary addition to it, helping me to accomplish what I can’t do alone. I authorize their working in conjunction with my therapist. They share information because they’re a team. Friends helping friends, breaking down barriers surrounding mental illness because one of their own is in need. A present that big won’t fit under the tree.

There’s always more work to be done, more stories to share and mysteries to solve. I’m not willing to lose this weird, wonderful world to my genetic encoding and environmental influences. One brain in one-hundred works like this. That’s nothing to be ashamed of. To the contrary—wouldn’t those odds be considered unique? Not “better than”, “worse than”, or “snowflake unique”, just different in a way that deserves to be acknowledged.

Something is different today. I’m becoming someone I want to know better. And that’s a miracle.

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Holiday Reflections

In reality, it is BECAUSE of the really difficult, unimaginably painful times that the good times feel heavenly. The words that come to mind are healing . . . forgiveness . . . appreciation . . . living . . . recovery . . . growth . . . strength . . . acceptance . . . love.

I’m not sure if my friends have figured it out, but my holiday communications provide a fairly accurate clue as to what the past 12 months have been like for me and my immediate family. I refer to these as Options 1 – 4 (with occasional variations, upgrades or recalls).

Option 1: Holiday card with a seasonal photo of my daughters (smiling and together) and a handwritten note or personalized letter = a good or even great year (where ‘normal’ is our epitome of ‘great’).

Option 2: Holiday card made up of a collage of photos from throughout the year = the year may have had some ups along with the downs but the downs are clearly winning in the last months of the year (seasonal depression/mood swings?).

Option 3: Holiday card with a few photos, mainly of the pets = there wasn’t much worth photographing or remembering over the past year and certainly not worthy of sharing. The inner circle of friends and family are familiar with the radio silence that’s been building since January (or longer).

Option 4: No card, no letter, no email or ecard = December?? Holidays?? Could someone please throw us a lifeboat?!

This year, after an ‘Option 4’ 2014, I cheerfully went for option 1 with a slight sprinkling of option 2 (only because my daughters are located in 3 different states, preventing an otherwise cheerful group photo). The cards are almost done (way ahead of my usual schedule) and my heart is filled with gratitude and appreciation as I reflect on treasured memories. Yet I just can’t find a way to transfer these emotions and moments into written words. In all honesty, I’m not sure that I even WANT to share any of the past year. I’m not sure that I even CAN share my version of 2015.

Why the reluctance and writers block? Perhaps because of the many prior years of options 3 and 4. An option 1 year is truly something to be cherished, nurtured and savored. Unless you’re intimately familiar with the behind the scenes activities of those seemingly silent years, an option 1 year could easily be mistaken for a very bland, boring, unremarkable year.

In reality, it is BECAUSE of the really difficult, unimaginably painful times that the good times feel heavenly. The words that come to mind are healing . . . forgiveness . . . appreciation . . . living . . . recovery . . . growth . . . strength . . . acceptance . . . love.

I cannot convey the deeply profound meaning of these words simply by recounting milestones, vacations, career changes, graduations, births, deaths, marriages or divorces. Nor can I, or will I, lay out the many earlier years of heartache and struggle as a frame of reference. I don’t want to dredge up those memories and risk tarnishing the good times of now. I want to stay in the moment and soak it all in. There are no guarantees, we are all fully aware that any of these options could take the stage front and center at any time. That is all the more reason to just cherish how far we’ve come, as individuals and as a family.

If a picture is worth a thousand words, then I’m going to need to put some extra postage on this year’s cards. But for this blog, with this remarkable, understanding and insightful group of readers, there is no need for pictures or an abundance of words. I’m pretty sure that you understood from the very first sentence. Wishing everyone a truly peaceful New Year.

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Surviving Depression

If I can do my part in controlling stress and depression triggers, keeping them at a distance, or out of my life completely, by drawing a solid line between what I deem to be benign and what will definitely jeopardize my health - I’m going to do just that. It’s called survival.

HudsonRiverALG“Let me tell you what I hate,” said the mysterious fedora-wearing woman making a grand entrance into the closed-door business meeting, already 30 minutes in-progress. I happened to be speaking at the time, making a presentation to a potential new client, giving them every reason they should go with my company instead of the competition. Until that moment, all had been going well. Signs of closing this deal were coming together like stars spelling Y-E-S in the sky.

In business, few emotions compare to the exhilaration of closing a new deal. It’s not the financial reward, but the burst of confidence from validation that I’m actually good at something. That is, until a total stranger, whose name I never managed to get, can suck all the energy out of a room. Within seconds she had undermined months of planning this presentation. The meeting ended abruptly — my colleague and I were quickly escorted to the elevator bank, looking at each other in disbelief.

The Fedora Lady story is one that has stuck with me for two decades. It happened early in my career, and although it makes for humorous storytelling, it serves as a stark reminder that there will always be someone or something that can knock the wind of out my sales, er, sails.

That was twenty years ago when depression was kicking my ass, lying to me, telling me that I was bad, stupid, ugly, worthless, and put on this earth for the soul purpose of suffering. It seemed like my profession provided me with daily opportunities for rejection — reinforcing my self-depreciation. Any analyst would have a field day dissecting the reasons why I chose to earn a living that fed my disease, day after day. Maybe the highs of bringing in a new account outweighed the lows of being turned down. Lately I prefer to not look back and question my decisions. What’s done is done.

Depression is a hideous illness that revels in taking down its victims. Despite my success with battling negativity, I have a vulnerability to succumb to toxic people, leaving the window open for despair. Today, after years of CBT (cognitive-behavioral therapy) and the help of antidepressants, I have a clear understanding of my disorder and how it affects my brain. That does not mean that I’m immune to suffering from depressive episodes. It just makes the experiences a tad easier to deal with. I now know that they will eventually subside.

For my mental and physical well-being and self-preservation, it’s my responsibility to remain vigilant. I must keep harmful influences far away by setting firm boundaries. If Ms. Fedora barged in on me now, I’d laugh it off; my skin has grown thicker over time. Nevertheless, for my own protection, I need to pick and choose who and what is allowed near me, whenever possible. It means cutting out the crap that can make me sick. The same way someone with high cholesterol must modify their diet, I’m no longer willing to risk my health for the sake of pleasing others, burying my feelings, biting my tongue, and later turning that anger inwards, leaving me with residual pain and long-term collateral damage. If I don’t put myself first, who will?

As I go about life with this strategy for staying sane, there may be people who won’t understand. They might get angry and perhaps even cut ties with me – and as much as that stings, it’s still better than becoming ill from avoidable stress. Why shouldn’t I treat depression the same way I would manage any other chronic illness? I know my road won’t be easy, but it’s up to me to set limits. I don’t want to end up with a tumor because I was too anxious to speak up for myself and do what’s best for me. Those days are over.

All you need to do is watch the news for five minutes to see how little power we have over horrific events happening around the world. These are scary, gruesome, fear-inducing times we live in, keeping even the most chemically balanced people awake at night.

If I can do my part in controlling stress and depression triggers, keeping them at a distance, or out of my life completely, by drawing a solid line between what I deem to be benign and what will definitely jeopardize my health – I’m going to do just that. It’s called survival.

 

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Triggers

Through my years of traveling with post traumatic stress disorder and major depression, I wrote a lot of journal entries. Each word represented an aspect of my life at that time. I kept one of those journals, and, on occasion, I like to open it up and remind myself how far I have come. The journals were beneficial in my life during my travels with PTSD and depression because they helped me to see the various aspects that triggered worse outcomes or made them better.

Triggers November 24, 2015Those of us who have lived, or are currently living, with a mental health disorder understand all too well that there are triggers that can make symptoms worse. Just as with any disease process there are certain daily aspects that can make it better or make it much worse. Through my years of traveling with post traumatic stress disorder and major depression I wrote a lot of journal entries. Each word represented an aspect of my life at that time. I kept one of those journals and on occasion I like to open it up and remind myself how far I have come. The journals were beneficial in my life during my travels with PTSD and depression because they helped me to see the various aspects that triggered worse outcomes or made them better. Perhaps some of you have been wondering where my posts have disappeared to. I can assure you I am still here, but I have had to step back a bit a little while in school.

Although I have not taken a medication for depression or PTSD in over 9 years, I can tell you that those disorders do not just disappear. They are always going to be a part of my life. In truth I am grateful for the many lessons and roads they took me down. The ability to be grateful for them took me a lot of time. Mental health disorders are like any other disease. They are always attached to a small piece of your genetics. Some people have to take medicine for the rest of their lives and others, like myself, are able to live without medications. My ability to do this comes from pinpointing my triggers and knowing how to utilize other coping skills. This is not something I learned overnight, but are abilities that took me many years to build.

My recent journey back to school to become a nurse practitioner has not been easy by any means. I am a mom of two, I work weekend day shifts as a registered nurse, am a wife, and I go to school full-time. Can you say full plate? I have had to truly learn how to become my own best friend. One of my main triggers in the past has been stress. The moment I felt overwhelmed was the moment I would hear those little internal voices telling me how worthless I was or my PTSD night terrors / anxiety would start up. Going back to school for my Masters has shown me how far I have come along the paths of my past journey. So how do I deal with my triggers?

1. I have had to learn to be grateful for every mile I get while in Grad School. I was used to running 40 miles or more a week, but while in school I am happy to get 20. Running has become my time to really push those stressful feelings away.

2. Being honest. This means being honest not only with those who support me, but with myself too. On a daily basis I ask myself what I can handle and how it will affect me. If I am feeling overwhelmed I talk to my family or a close friend. That moment to completely let go and get other’s thoughts is a blessing in disguise. I have learned that when you are stressed or overwhelmed your thoughts are not always rational, so sometimes you need a second opinion or a reality check.

3. Quiet time. I am very much an introvert at heart. Each day I can be around people for certain periods of time and then I have to hide in my cocoon and regroup. That time to myself and my own thoughts is valuable. I used to be afraid of that time because my thoughts were so disordered and I feared where they would take me, but over the years I have learned that those quiet moments are my time to regenerate. I call it my Dr. Who time.

4. Accepting my limits. To help deal with the stress triggers I have had to accept that I have limits. I cannot go for a run, do my 8 hours of homework, take care of my family, work, do bills, cook dinner, go to clinical, and sleep all at the same time. My life has become prioritizing and asking for help when I feel I have too much on my plate. We all have limits. The goal is not to exceed them, but to appreciate and work with them.

5. I have learned that if I do not get adequate sleep it will lead to an increase in anxiety and stress.

Today I ask each of you to give yourself a big hug. You are strong. My question for you today is what are your triggers? How do you deal with them? Until next time, peace and love to you all.

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Change Is Here

BC2M has changed the minds of many in terms of mental health awareness. BC2M has changed my life. For that I thank everyone involved with BC2M. Your kindness and friendship have helped me regain some of the three self’s. I look forward to the next 5 years and what we individually and collectively will accomplish. It makes my life worth living.

Sometimes random comments can lead to unexpected opportunities.

In the fall of 2009, I found myself in a somewhat good place. The 16 years of depression, OCD, and anxiety seemed to have passed. I was slowly venturing out in public. I had written one article about my journey. I had spoken at two conferences. One was for the Canadian Mental Health Association. The second was a panel discussion before a group of lawyers and judges. I found talking in front of strangers somewhat therapeutic.

But I still had little self-confidence, self-esteem , or self-worth. They were most damaged by my depression and breakdown. I still struggle with the damage done to the three self’s.

Much of my time was still spent in my bedroom, at my computer, looking for information on mental health, seeing what others were doing. I wanted to feel that I wasn’t alone.

I read an article Glenn Close had written for the Huffington Post about her sister, Jessie, and her nephew, Calen. I checked out the BC2M website. I even checked the facebook page. Back then I knew little about facebook. I had two friends, my niece and nephew!

I made a few comments on the BC2M facebook page.

A few weeks later, I was asked to have a discussion with Nancy at BC2M. We had a lengthy telephone call. I was then invited to be a BC2M Volunteer. I had no idea what was ahead, but the sense of acceptance and empathy from Nancy made my decision easy. I also had this need to be active in some way. I was getting weary of being alone.

That was in December of 2009 and I am still hanging around!

Though my role has changed over the years, one thing remains constant:  the people involved with BC2M have helped in my recovery.

I had the wonderful opportunity to meet Jessie for the first time when she traveled to Halifax on my invitation to speak at a fundraiser. I got to meet her service dog and close companion Snitz too! We shared stories, we laughed and cried. Those few days were so special. Jessie and my mother talked and bonded as mothers of sons who had mental illness. Jessie, and so many others, gave me a sense of acceptance. Stigma had hurt me to such a great extent. But now, I could share and not be judged.

I see other BC2M Volunteers who have become true champions in mental health advocacy. To see these fellow BC2M Ambassadors share their journeys in magazines, blogs, and in person is such an inspiration! I’m in awe of their paths and so grateful for their persistent conversation!

I get emotional – tears of joy and admiration- when I see people on BC2M sharing, whether I know them personally or not. I feel such a sense of connection regardless. I am proud of all of you. We share mental illness and mental health. We share hope. I am comforted knowing that I am not alone.

The stigma has been confronted and will be shut down.

BC2M has changed the minds of many in terms of mental health awareness. BC2M has changed my life. For that I thank everyone involved with BC2M. Your kindness and friendship have helped me regain some of the three self’s.

I look forward to the next 5 years and what we individually and collectively will accomplish. It makes my life worth living.

 

 

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Shiny Pennies

I have such gratitude for the work with my former therapist. After 18 years together, I feel like there’s a computer chip in the back of my head that holds her advice and wisdom. When I’m unsure about a challenge or risk of relapse, her advice echoes through my mind. She knew me better than anyone in this world, but now we start again – that’s scary and I’m not sure if it’s going to be luck or hard work that keeps me on track. Maybe both.

Shiny Penny pic 2“You’re Lucky”, I’d hear – and I never got it.

My childhood was great. I was blessed with having a good education, parents and extended family who instilled solid morals and a hard work ethic. Looking back, I can see how some could say I was lucky.

But after being diagnosed with bipolar disorder in 1997, I didn’t feel any shiny penny in my pocket. I felt deprived of a so-called “normal” life and questioned my very existence. This, of course, is common when trying to rebound from a life-threatening bipolar episode. Everything is foggy. Only a glimmer of reality remains.

As I’ve recounted many times, my reality felt more blessed as I traversed those ‘bleeky’ bipolar waters and shed myself of the stigma ridden self-loathing. I eventually held a rewarding professional role and met a fabulous man who became my husband and Father to our now six-year-old son.

I worked hard and overcame seemingly impossible trials – battles I’ll always bear personal witness to as I manage my compliancy with healthy concern. I had my support group. I had my regime of medications that worked and I had a team of medical clinicians who knew me well and whom I could trust. Looking back, I surely did have not one but a full bucket of shiny pennies.

My family has recently relocated, moving from Massachusetts to Virginia. My first order of business was establishing a new medical team. We arrived in April, but my first doctor appointment was late August – as a “well patient” that’s the best I could do. And this was via much communication with not just psychiatric practices but also with the direction of internists and nurse practitioners. I thought I was “on it”. For 18 years I’ve had the same practitioners and never dreamed my care would be this difficult or inefficient upon moving.

I get it. I was lucky. But now my luck seems to have ‘hit a snag’.

Beginning a relationship with a psychologist in Virginia for the talk therapy aspect of my bipolar management was relatively painless. But the brand of therapy was completely different from what I had in Massachusetts – in fact, when I was told that I thought I was better than bipolar – or that I could manage it without great fear of a relapse, I was surprised to hear that as a bad thing! I’m compliant. I manage my behavior. I’m a good Mom, wife, community leader and advocate for our cause of eradicating stigma. I do the best I can, which from my estimation and that of my MA practitioners and support system was pretty good.

It’s difficult, but I try to remember my new clinicians don’t know me. They don’t understand where my base line sits, so clearly they can easily make assumptions and assessments that I question – a first.

After finally meeting with my new psychiatrist, I thought maybe things would work. She was thorough and understanding when assessing me, and my case. We’re working on our relationship and the best care for me. It takes time, trial & error, and most importantly, communication.

I see how lucky I’d been with my previous medical team. Good clinicians and awesome support, love and guidance make all the difference in the world when managing your way out of the stigma-ridden darkness.

I have such gratitude for the work with my former therapist. After 18 years together, I feel like there’s a computer chip in the back of my head that holds her advice and wisdom. When I’m unsure about a challenge or risk of relapse, her advice echoes through my mind. She knew me better than anyone in this world, but now we start again – that’s scary and I’m not sure if it’s going to be luck or hard work that keeps me on track. Maybe both. But I’ll say one thing: I’m determined to maintain my health, and if that means using my knowledge of the system to make my good health happen, that’s fine.

For now, “I get it”. I’ve had a life that’s required – for good and bad – hard work and good support. Now in the thick of things, I wish I had been more grateful for being so lucky.

But there’s no time like the present. Better understanding realities of the country’s health care system, I now need an extra dose of luck to get me through this clinical mess.

I have a horseshoe carefully sitting just right on the windowsill over the kitchen sink. I like to think that helps, but really it’s just a reminder to stay vigilant and believe in myself. “I can do this”, I say to myself. Thanks, life, for the good luck – a new shiny penny’s worth of cheerleading and guidance would be great.

 

 

 

 

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Survivors

Despite the fact that schizophrenia hides the truth from me just for sport, if my personal experience has taught me anything, it is this: we are all connected. Profoundly connected. We don’t have to live life alone. Ever. Desperation will tell us otherwise, but someone is always there. Volunteers, an EMT, or a trusted friend—someone will listen, someone will come. You are a gift that deserves to be cherished. Your light keeps others safe in the dark. Shine brightly, survivor. Shine brightly.

survivors v2I recently participated in the American Foundation for Suicide Prevention’s annual Out of the Darkness Walk. The connection to life, and its gifts of fragility and strength, was inspiring. Spending time with a group of people who understand the complexity of this issue filled my heart with admiration and respect.

I’ve lost a friend to suicide, been affected by the attempts of two loved ones, and in January 2014, plotted and applied myself to my own course of death. I failed, and even on the days when life feels overwhelming, I awake with gratitude to face whatever it presents. I’m thankful for the people who called the First Responders, and to those who sat at my bedside in the emergency room. If they hadn’t come together, I would not be typing this. I would be ashes in an urn.

It was not, however, my first attempt. As a child, I dropped myself from the attic window of a garage onto the debris below with intent to do bodily harm. It wasn’t enough to twist my ankle or puncture my foot. I had to take it further. I went from self-harm to suicidal thoughts during those three short falls. If the bricks, nails, and broken glass weren’t enough to ruin my little body, it occurred to me to burn myself alive—because I was no better than trash.

On my final trip into the garage, I found a box of matches. I knew that oil and gas were flammable, but I couldn’t find either, so I rubbed my hands in the grease from the concrete floor and applied it to my forearms to see if it would ignite. Dirt that had settled there dampened the effect, but fire lit in a few spots. I didn’t feel pain. I felt freedom.

I was nine. What nine year old thinks of death as freedom? For that matter, what nine year old thinks of their own death at all, especially in terms of it being an escape? Suicidal ideation in the mind of a child is beyond heartbreaking. How numb does that tiny life have to be to want to end?

The haunting never left completely; it returned during college with my first psychotic episode. Dark thoughts followed me from class to class, and eventually surfaced in my poetry, music, and art. After a car crash in the mountains over winter break, I was irate that God hadn’t seen fit to kill me in the wreckage. I was stuck with this life. I wanted out.

Standing on a bridge above the ship canal on a cold December night, I wondered how much harder it could be to drop into the void than to fall onto those nails and bricks from my childhood. I’d climbed onto the guardrail and nearly let go when a motorcyclist stopped me. He drove me to the graveyard, set me down among the tombstones. If it was meant to scare me conscious or afford me solace, I’ll never know—his face was hidden beneath a helmet. I laid in the grass instead of the morgue.

Sometimes it’s the voices I hear. Sometimes it’s my own. Sometimes it’s what I think you’re thinking, other times it’s just the day. The reasons aren’t the reason. There is no justification. It doesn’t call me, and I don’t seek it out, but it feels like a friend, or used to until I made real friends. People who’d been where I’d been, who understood from their experience that having every choice is having no choice at all, and having no choices left was a prison; that the mind and soul need love like the body, and the body needs love more than loathing needs reward.

One life touches so many. I had only to look around me to see evidence in action. Participants strode proudly through the city, sharing their stories, their hopes, their smiles and tears. We were a miniature tribe of survivors dancing to the freedom that living affords us: a chance to reach one another despite our mental illnesses or the culture that shames us. We celebrated those who’d gone, and those of us who stayed. For the ones left behind, we offered support.

Despite the fact that schizophrenia hides the truth from me just for sport, if my personal experience has taught me anything, it is this: we are all connected. Profoundly connected. We don’t have to live life alone. Ever. Desperation will tell us otherwise, but someone is always there. Volunteers, an EMT, or a trusted friend—someone will listen, someone will come.

You are a gift that deserves to be cherished. Your light keeps others safe in the dark. Shine brightly, survivor. Shine brightly.

If you are in crisis, call the National Suicide Prevention Lifeline at 1.800.273.TALK (8255)

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What's It's Like Being Bipolar by Davs

So, this is bipolar. For me. I personally believe that bipolar is a spectrum disorder because I’ve known people diagnosed who were milder, or more extreme than myself. I couldn’t find the art piece, but it summed up what being bipolar is like perfectly. Picture a man walking on a tightrope, except the rope goes up and down, up and down forever. The man has an umbrella and is doing his best to step over the valleys in the tightrope, but it’s inevitable that he will fall again. He never knows how far.

Dav Oct 2015_n copyI was diagnosed as a manic depressive, bipolar 20 years ago. As a kid I didn’t know any other way, nor could fathom existing in any other way but for how I was. I was prescribed medication from the start but fought taking it, or would comply for a few months, see no difference and stop taking the pills.

Almost everyday had some kind of chaos, whether it was fighting, sneaking out, trying to get high, sex everywhere, hitch hiking, running away, falling apart, etc, etc, etc. I didn’t recognize any of my  decisions as  being chaotic though, only in hindsight was I ever able to look back and pinpoint decisions I’d made to be dangerous, rash, and or just plain stupid. At the times of making said decisions it was with the false clarity only mania can give.

When you feel manic and grandiose, it’s like being high/euphoric. You speak without thinking, get overly passionate about things. You start projects, or obsessively hone a skill. You clean and organize and decorate until you notice the morning sun in the window and realize you’ve stayed up all night. Although mania can be dangerous, as in making important life decisions without a second thought. This is a perk of being bipolar, after you do find a med cocktail that actually works you miss the thrilling manic state.

Manic states also cause irrationality, say if you disagree with someone, or feel wronged, and are in a manic state. Anger rushes through you like a mamma bear discovering a camper among her cubs. Often times after a fight I would be told things I’d said or done that I had no memory of doing. The mania catapults your extreme emotion into this place where you just let go so completely that you aren’t even aware of what you’re doing.

Depression is the dark wave that swallows you whole. You don’t know when it’s going to come, and it hits you in the face after being hopped up on mania. It’s strange that despite my 20 years dealing with this, the depression never ceases to surprise me. Every time I start to think things are finally coming up Sarah I honestly forget that it’s not going to last. I forget too, when it takes me over that it’s a chemical imbalance in my brain and not my fault. I feel guilty, like I did something wrong, and this is why I’m depressed. When I say depressed, I mean every worst possible scenario for my life is flooding through my brain as if it’s actually happening to me right now. I feel like everything’s pointless, what’s the point is asked a lot. And then comes the semi-fantasizing about going to sleep and never walking up. That’s the point that I know to ask for help.

So, this is bipolar. For me. I personally believe that bipolar is a spectrum disorder because I’ve known people diagnosed who were milder, or more extreme than myself. I couldn’t find the art piece, but it summed up what being bipolar is like perfectly. Picture a man walking on a tightrope, except the rope goes up and down, up and down forever. The man has an umbrella and is doing his best to step over the valleys in the tightrope, but it’s inevitable that he will fall again. He never knows how far.

Five years ago, after years of trial and error I found the perfect meds for me. I’d never known an even temperament, contentment just to sit in the sun and look at my garden. I’d never gone more then a month without a total meltdown, or fight. I had a crazy passionate jealous streak that I now laugh about. You don’t even understand how wild this is to me. But you might understand how afraid I am too. Everybody knows meds change in your body and lose effectiveness over time. I’m on this five year streak and everyday I wonder when it’s going to come crashing down. To go through the trial and error again, the loss of control, the side effects from meds that don’t work for me, how long will it take to get here again? Will I go mad, and make some wild decision that ruins the life I’ve built up for myself?

Introspective I guess.

I don’t mean to say that I dwell, I enjoy what I have, but it lurks, right? I still get lows, no highs to my dismay. But I’m content. For now.

 

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Psycho Killer

Think about it. Would you let your kids go trick-or-treating as The Sexy Cancer Patient? The Sexy Ebola Victim? Somehow I don’t think you would. I’d like to think that nobody would. Then again, I’m an artist who defends everyone’s right to self-expression. I’m also one of those annoying mental health advocates who believes in the dignity of every human being regardless of their diagnosis. You know, one of those people.

stabber moonClinch your fist. Raise your arm above your head. Make three forward thrusts with your forearm, like you’re pounding on a door. Now, with your voice pitched up as high as that arm, shout these nonsense syllables and see what happens.

VREEEN! VREEEN! VREEEN!

Did that get your coworker’s attention? Did she laugh and say something like, “I know, right?” before slipping back behind the divider to her desk?

VREEEN! VREEEN! VREEEN!

Now you’re hearing it from other cubicles. Stand up. Look around. Jerky little fists punching the air, happy squeals, three piercing notes. Everyone’s on board. Work sucks. Giggle away.

VREEEN! VREEEN! VREEEN!

Want bigger laughs? Get video. Post it on the Internet. Sit back and watch the hits. You’ve punked the world. From your office. Where you’re safe, anonymous, and unharmed. Awesome.

In the middle of a campus, a student who’s seen your post decides to up the ante. Inspired by your thirty seconds of fame, he grabs his GoPro and heads out to recruit his buddies. Shenanigans ensue. He captures the crew, arms in the air, shrieking away in convulsive laughter.

VREEEN! VREEEN! VREEEN!

On the crosstown bus, where riders don’t waste a moment whipping out their smartphones and staring into the screen, the silence of the commute is faintly punctured by the tinny earbud squeals of

VREEEN! VREEEN! VREEEN!

as they quietly imitate the gesture, tugging on the straps of their purses and book bags. Muffled snickers pulse with the wheels-go-round.

At home your kids are swapping the family tablet. Like the proverbial rat at the end of the maze, they repeatedly hit [PLAY], falling to the floor in peals of laughter, rewarded with a treat every time the grimacing partier in the video—ketchup smeared across her duck-lips, brandishing a carving knife— yelps “Dude, check it out! I’m a TOTAL SCHIZO!”

Qu’est-ce que c’est?

Through dinner straight till bedtime, from your tweenie to your toddler, after all the lights are out, that memetic imagery hangs in the air like the cloying scent of skunk. There’s a sense of unease colder than an ice bucket, and you’re feeling challenged to identify it.

Maybe you feel dirty. Maybe you feel—what?—ashamed? No. Why would you? It’s funny. It’s really funny. It broke the doldrums at work, made for good times at school, and brought the family together ’round the kitchen table like Grandma’s famous apple pandowdy. How could you possibly feel guilty? This is our country coming together, using technology to spread the happy. If everybody’s laughing, where’s the harm in it? Don’t you people think you’re being just a little too sensitive? You’re overanalyzing a harmless gesture that everyone has fun with. It’s just a noise and a wiggle. What’s the problem?

The problem is that it reduces the lives of one percent of the world’s population to three screeches from the lips of attention-seekers who’ve likely never heard the discordant riff from Bernard Hermann’s cinematic score The Murder, let alone seen the oft-lauded “shower scene” from the 1960 Alfred Hitchcock film Psycho for which it was written.

Equating the infamous 45-second slasher sequence—inspired by the unthinkable crimes of Wisconsin murderer Ed Gein—with any thought disordered mental health consumer is precisely the kind of stigma that many Americans staunchly defend as their God-given right to self- expression. News Flash: it’s neither. It is unjustifiable and ignorant. Whose God would sanctify prejudice, and what country would endorse it?

Every Halloween, costume ads for the Sexy Insane Asylum Nurse and the Sexy Mental Patient get trotted out for a month or more before the party weekend arrives. And every year, intelligent people in the mental health community stop and question the torn, slutty outfit with blood spatters on it, and the coveralls coupled with a faceless mask and cleaver. But to mention the stigma reinforcement such costumes perpetrate is tantamount to treason in the selfish minds of the narcissistic party proles.

If a costume is meant to reflect the inner fantasies and aspirations of the person wearing it—a sort of ersatz cosplay empowerment, if you will—then explain the sultry allure of that insane asylum. Enlighten those of us who’ve lived through a psychotic break and the resultant hospitalization. Where’d we miss the bootylicious heat? Was it the four-point restraints or the sedative drip? Having been through that experience, I can vouch for its absolute lack of titillation—unless one finds it stimulating to be treated like an animal.

When the slasher movie’s over and the makeup’s been removed, when the costumes are cleaned and folded, members of the mainstream audience can pack those bloody terrors away and ignore them for a year. Those of us living with a mental illness don’t get to leave our fears in the cheap seats. We don’t get to take off the raiments of another’s narrow-mindedness, or wash off the disgusting slime of stigma cast upon us for being born differently.

Medicine alone won’t shut off the projector; therapy alone won’t turn up the house lights. The combination might take us to the lobby for snacks, but all too quickly we’re back in the theater, wondering silently to ourselves, “When will this discrimination stop?”

Maybe when the highly publicized witch hunt is made illegal. Maybe when the word “crazy” is co-opted by the community of mental health consumers in the way that other pejorative terms have been rendered meaningless by their respective cultures.

I’ve worn my share of costumes and makeup. I have no argument with fantasy or fun. But blatant profiteering at the expense of people with psychiatric disorders is not only insensitive, it’s offensive to any citizen with a modicum of humanity in their soul.

Think about it. Would you let your kids go trick-or-treating as The Sexy Cancer Patient? The Sexy Ebola Victim? Somehow I don’t think you would. I’d like to think that nobody would. Then again, I’m an artist who defends everyone’s right to self-expression. I’m also one of those annoying mental health advocates who believes in the dignity of every human being regardless of their diagnosis. You know, one of those people.

Oh, and one more thing. I live with this pesky nuisance called schizophrenia—a chronic and debilitating mental disorder steeped in fear and apprehension, complicated by misinterpretations of reality. Like the reality of a holiday turned sideways, where people like me can become the monster under society’s bed every 31st of October. As long as we’re “sexy”.

VREEEN! VREEEN! VREEEN!

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Anniversaries and Honesty

I realized the hypocrisy of my fears and my decision for the past 5 years not to share this one diagnosis. If I was truly going to walk the walk and talk the talk, if I was going to stand on equal ground with the 80,000+ people who have ‘liked’ BC2M on Facebook, if I was going to encourage my own children to be fearless and open about their own diagnoses . . . if I wanted to let go of the shame and the secrecy, then I HAD to stop ‘editing’ my story.

Recently, I had the opportunity to present on several aspects of mental illness at a Crisis Intervention Team (CIT) training for law enforcement officers. Afterwards, I stuck around to hear fellow Bring Change 2 Mind volunteer and former police commander, Chris Prochut, share his powerful and moving story. At one point, Chris spoke of the statistics – 1 in 4 adults will experience mental illness at some point in their lives. 1 in 4. Doing the math, that meant that roughly 7 people in the room had a mental illness. Chris invited those 7 people to stand up. No one moved.

Sitting in the back of the room, I slowly rose to my feet. I wasn’t sure if doing so would lessen the impact of the point Chris was making, but I also knew that if I didn’t stand up I’d be reinforcing the reluctance that filled the room. Chris asked me to share my diagnosis. ‘I have depression and ADHD . . .’ I responded. Then, hesitating, I took a deep breath and continued . . . ‘and I am a recovering alcoholic’.

Quickly I sat down, panicked, embarrassed and feeling like every eye in the room was on me. I had no problem sharing about depression or ADHD, especially in a room where, for an entire week, the topic was mental illness. But that last part – alcoholism – was something I’d never divulged in public, in writing, not even to my co-workers. My immediate fear was that this information could jeopardize my credibility and employability – that doors to future opportunities were slamming shut. I fervently hoped that people hadn’t heard what I’d shared or it hadn’t registered.

Why such a strong, negative internal reaction? For years I’ve been open and honest about the many ways mental illness has impacted not only my life but that of my family. I’ve encouraged others to discard their shame and their fears, reminding them that our diagnosis does NOT define us. Yet here I was, unable to follow my own advice.

The DSM-V (Diagnostic and Statistical Manual of Mental Disorders, 5th Edition) includes a chapter on Substance Related and Addictive Disorders, legitimizing alcoholism as a mental illness. Surely that confirms that, like depression, ADHD, schizophrenia, etc., addiction is not caused by a lack of willpower or poor choices. But still, that didn’t change my perception of what the outside world thought or believed.

For the past month my reactions and fears kept lurking in the back of my mind. Particularly as I thought about a fitting blog topic tied to BC2M’s 5th anniversary. I thought about how openly, fearlessly and honestly my fellow bloggers have not only shared their diagnoses but gone on to give readers an intimate, unfiltered view of life through their eyes. I realized the hypocrisy of my fears and my decision for the past 5 years not to share this one diagnosis. If I was truly going to walk the walk and talk the talk, if I was going to stand on equal ground with the 80,000+ people who have ‘liked’ BC2M on Facebook, if I was going to encourage my own children to be fearless and open about their own diagnoses . . . if I wanted to let go of the shame and the secrecy, then I HAD to stop ‘editing’ my story.

The reality is, I am not alone. Over and over Bring Change 2 Mind has been a catalyst for breaking down feelings of isolation. Through posts, blogs, PSA’s, videos, presentations and more, BC2M has started and fueled conversations of hope, support, collaboration and strength. Addiction and substance abuse frequently go hand in hand with mental illness and unless we include these in the conversations, how can we expect things to change? Might someone feel less alone because I set aside my ego and my pride and shared ‘the rest of the story’?

5 years ago, almost to the day, I took my last drink. I credit that milestone to the honesty and support of others who shared their stories and offered me hope. How wonderful to now share this part of my story within the BC2M community, built on a foundation of honesty, support and hope. Together, may we all flourish and grow in our shared honest and unfiltered journeys, struggles and triumphs.

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The Many Faces of Mental Illness

It sickens me to know that, to this day, mental illness has yet to be given the same level of awareness and understanding as that of physical. On the other hand, however, I fear the repercussions of my illnesses being disclosed due to present stigma. I worry that people will perceive me to be weak which could not be further from the truth. I fear that people will slate me behind my back, label me as 'the crazy one'.

Faces of mental illness

I think it becomes all too easy for us to put on a front and sport a ‘stiff upper lip’ when it comes to daily life. We may not deem it to be the right time to show our emotions, such as mid-film, during work or in a class lecture, or we may not feel comfortable enough within present company. Whatever the reason may be, I have found that honesty is essential in order to receive necessary support for mental illness.

I do believe that a part of me wants people to know, I want people to know that inside I am dying. I want people to know the level of strength and courage it takes for me to climb out of my bed every morning and face the day – to leave the confines of my home, attend appointments and socialize. It sickens me to know that, to this day, mental illness has yet to be given the same level of awareness and understanding as that of physical. On the other hand, however, I fear the repercussions of my illnesses being disclosed due to present stigma. I worry that people will perceive me to be weak which could not be further from the truth. I fear that people will slate me behind my back, label me as ‘the crazy one’.

I know that this level of ‘paranoia’ stems from my own shame. I am ashamed and embarrassed to be this person. I cannot lie. I find it embarrassing to admit that my life is ruled by anxiety, that, after all I have been through, I cannot do normal everyday tasks such as leaving the home and going shopping without panicking. I am embarrassed by the fact that, almost overnight, I went from being a bright and outgoing twenty year old to a shell of my former self. New people coming in to my life only know the current me, but people from my past, well, that is a different story. I am ashamed each and every time the ‘black dog’ pays me a visit, as I find it near impossible to admit that I am drowning – that I can no longer go on. I am a prisoner of my own mind, powerless to release myself from its wrath.

I cannot help but believe that I am walking around with an arrow above my head declaring my illnesses, even though I have been told numerous times that people would not guess my emotional turmoil by simply looking at me. If anxiety no longer ruled me I would make a brilliant actress due to my level of skill in showing a different side to the world. I will still function – shower, clean my teeth, eat well and clean my flat, and I will force myself out of bed, even though I would like nothing more than to hide from the world and cry. I have built up that much of a front that I even struggle to let my guard down and show my emotions during therapy sessions, an issue which came to a head last week following my running away in the midst of a panic attack. My therapist was talking to me, as opposed to allowing me to talk, which caused me to freak out and start to panic. I could not get a word in, and felt smothered as a result of it. Upon my return, once my brother had managed to calm me down, I was faced with, well, a ‘telling off’ as I was reminded of the fact that ‘the room was a safe environment’, and she was a ‘safe person’. Really? I saw a therapist for two years and never let my guard down once with her, and I even struggle to cry in front of my brother, so what makes you think it will be any different with you?

I can be reminded of the ‘benefits’ of crying until they are blue in the face. It makes no difference. When crying alone I am in control, I can ‘let it go’, scream, bang my fists, and walk away as if nothing happened. When crying in front of someone else though there is always that awkward conversation once the tears have finished flowing, and to me that is embarrassing. I know this is something that I need to work on in order to get better, but these things do not happen over night, and I have always been one for taking my time.

 

 

 

 

 

 

 

 

 

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Lawyers and Snowflakes

In my five years with Bring Change 2 Mind (BC2M), it has become clearer by the day that the more we speak openly about mental illness, the more empowered we become. Without BC2M, I don’t know if I would have the courage to tell my story to a room of strangers without worrying how I’d be perceived and judged.

LawyersandSnowflakesImageI’ve had depression for most of my life. It started when I was 12. I went to bed at night and silently prayed that I would fall asleep and never wake up.

I lived with dread and gloom daily. I knew something was wrong with me. Twelve-year-olds shouldn’t be wishing to die. But back then I didn’t know how to express myself and I certainly was not aware there was medical help for whatever it was that was making me cry for no apparent reason — whether at school or hanging out with my friends, I’d frequently run to the bathroom and sob as quietly as I could. I thought doctors only treated colds and scraped elbows. It never occurred to me that there were remedies for inexplicable, profound sadness. I’d heard about grown-ups going to their analysts once a week for “neuroses” but it didn’t dawn on me that I could get help. It was turbulent at home. My parents were getting divorced, and I saw the emotional toll it was taking on them. Wanting to be the good daughter, I kept my problems a secret so it wouldn’t add to anyone’s tension. Last thing I wanted was to be a burden.

The sadness made me feel ashamed. I couldn’t understand the power it had over me. Each day seemed to get worse and I became more withdrawn and embarrassed. I couldn’t control this thing that was taking over my life. I learned to smile and laugh when it was expected of me, a skill I mastered over time.

My teenage brain made rules: Don’t make waves, don’t ruin everyone’s day, cry alone in your room or on your closet floor. Bite your cheek to distract from the chaos, and if asked, pretend it’s your head that hurts, not your heart. Take aspirin, retreat, sob until there are no tears left to cry, bang your head against the wall four to five times for being a failure at life, for not belonging on this earth, crawl into bed, pray for the pain to end.

Throughout college anxiety attacks entered into my daily routine. Balancing 18 credits per semester, an internship and a part-time job as a waitress in a busy Mexican restaurant, all while suffering with inescapable melancholy and self-hatred, was too much for me. The innate pressure I put on myself to succeed at everything caused me to have episodes of dizziness and nausea, tightening in my throat, heart palpitations and throbbing headaches. I was positive that I was going TO DIE RIGHT NOW in front of all my classmates. Thanks to one of my astute professors, she suggested I make an appointment with the campus social worker. From there began the journey of years searching for the right doctors and mental health specialists who could figure out what was wrong with me. Wanting to live was the new goal I worked towards, even to this day.

Just a few weeks ago, I was part of a panel at the New York City Bar. It was titled, “Lawyers and Non-Lawyers with a Mental Health Diagnosis: A Conversation About Stigma.” I was the only panel participant with a diagnosis, making me the designated mental patient.

The two-hour discourse was described as: “A candid discussion of issues involving the stigma of mental illness: the ‘sanism’ bias in the mental disability law system; character and fitness for Bar applicants/attorneys with a mental health history; the stigma’s chilling effect on getting help; confidentiality issues; the value of supported employment; and helpful resources.”

When it was my turn to address the room of lawyers, law students and assorted professionals, I opened with the first five paragraphs of this blog. Speaking to an audience in the mental health field is something I’m comfortable doing. Even if I don’t know anyone, I’m among people who get it. They are both strangers and friends. If I stumble in front of them – no biggie.

In the 10-minute time slot I had to drive home the gravity and momentous correlation of stigma and mental illness to the widely diverse group at the NYC Bar, I used the tactic that has always worked best for me. I told my story and used the words depression, anxiety, fear, death and stigma while attempting eye contact with each individual.

In my five years with Bring Change 2 Mind (BC2M), it has become clearer by the day that the more we speak openly about mental illness, the more empowered we become. Without BC2M, I don’t know if I would have the courage to tell my story to a room of strangers without worrying how I’d be perceived and judged.

Although I was nervous as I walked to the microphone to speak, I also knew that statistically one in four of those in the audience either have experienced mental illness themselves or know someone who has. I was bound to have friends in the audience who’d relate.

Depression and anxiety are diagnoses that are broad in description, but unique to each person. As I summed up my speech with 10 seconds to go, I went back to the origins of my story and reminded everyone that this was my story. Like snowflakes, no two accounts of mental illness are the same although they may sound alike and share similarities. We are all one-of-a-kind. With each story told, we get closer to chipping away the stigma that keeps millions of people secretly suffering from getting the help they need.

Let’s keep the conversation going.

 

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Clicking

If we want to change, we have to be willing to change. That willingness comes from within. No one can tell you when you’re willing to be willing. No one can foresee when change will come. You alone determine that. Your therapist can track your symptoms, guide you toward solution, assist you in asking yourself and your doctor the right questions to help keep you stable and healthy, but in the end, the difference lies with you. When you make the call, you’re making yourself stronger.

hands holding jigsawEverything was going to be different now: a different bus, a different building, a different office, a different face. A new soul in my life, a new life beyond this one. Something different from this murky existence of no diagnosis, no treatment plan, and no understanding of what was happening to me.

The bus was late. I started to panic. I reached into my pocket and clicked my trusty floss container in perfect rhythm to a nursery rhyme, clicking my way to calmness like I always had—until I forgot where Jack Horner sat. I turned to the gentleman standing next to me. I had to ask. I couldn’t click. Where was the bus? What happens to Jack? He offered an answer and a tissue. I didn’t realize I’d been crying.

The week before, I’d called the new clinic to see if there was a cafe nearby. I needed something familiar to maintain the ritual I’d established before my previous appointments. Tea and a cookie, time to think, to be around people, pretend to be one. “Yes”, came the answer, “in the lobby of the building”. I’d be met there. I could sit in the corner. Like Jack.

My first therapist’s office was near my childhood home. The surroundings afforded a sense of ease which made opening up feel downright neighborly. But there were also times when elements of trauma found their way through the backstreets and into our sessions. The day he said it was time for me to find a new therapist, trust was replaced by starvation and fear. I went underground. Bad hygiene and no sleep. So when this new person with cat-eye glasses and a welcoming smile introduced herself to the terrified creature in the blue plastic rain coat, something clicked. Better than neighborly. A new soul in my life.

Every inch of data regarding psychotherapy tells you to ask questions and ascertain if your counselor’s going to be a good fit, but this wasn’t so much a Cinderella shoe as it was a mission. I had to hit the ground running and get her up to speed if we were ever going to work together. There was only one statement I knew I had to make. Here’s the deal. I don’t know what’s wrong with me, but in the two years prior to coming under scrutiny by government agents and unseen forces, I’ve learned enough to know that I don’t know who I am or why I’m here. I need to survive. Can you help me? Can you help me find me? I’m not real anymore. But I want to be.

She understood. And we understood. Everything was going to be different now.

The stigma attached to seeing a therapist can sometimes rival the illness itself, which is unfortunate because therapy can play a vital role in a person’s treatment plan.  Maybe it’s the caricature of the absentminded PhD scribbling detailed notes about your potty training. Or admitting your frailties to a New Age hippie who’s charting dilithium crystal levels in your diet.  I really don’t care. I’d tell my secrets to either of those cartoon characters if it helped me find my way out of the pain of my symptoms and into a solution that worked. And yes, some people still make rude remarks when I tell them that I’m in therapy, but I can tell you this: my therapist has not only helped me make sense of my diagnosis when I couldn’t, but she’s helped save my life. More than once. And I’m grateful for that.

There’s no amount of ridicule, discrimination, or stigma that will keep me from solving the puzzle of who I am and what I live with. If someone with the credentials and experience to assist me in piecing that jigsaw together wants to be there for me, then I’m all in. I’ll take the help. Schizophrenia is nothing that I care to navigate on my own. Medicine’s fine, necessary even, and the human connection makes the circle complete.

Sometimes we need the stability of an outside influence. If we want to change, we have to be willing to change. That willingness comes from within. No one can tell you when you’re willing to be willing. No one can foresee when change will come. You alone determine that. Your therapist can track your symptoms, guide you toward solution, assist you in asking yourself and your doctor the right questions to help keep you stable and healthy, but in the end, the difference lies with you. When you make the call, you’re making yourself stronger.

It’s a long ride filled with ups and downs, just like real life. I encourage you to find the right fit, the right person to help you discover and maintain your best life. Grow with one another. Click.

 

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Sinking in Silence by Davs

I can’t even say in public how I really feel at times, because sometimes I’m not ready to put my freedom in jeopardy. Why do people suffer in silence? Because we can’t be honest. And when we can it’s for one hour twice a week at max with a therapist, who we get showered and dressed up for and smile and say I’m fine. We might say we’re depressed, but we know the keywords to avoid the therapist from being legally obligated to institutionalize us.

Sinking in Silence by Davs copy

I’ve been wanting to talk about something, without alarming people. And I’m angry. Because we live in an “I’m Fine” culture. How are you? I’m fine, I’m fine, I’m fine, even if on the inside you’re fucked.

I’ve been wanting to say to my friends “hey guys, I’m depressed” but anticipating the awkward position that puts people in, anticipating the courteous, well intentioned but generally placating response, if any, gives me the fear.

And too, I feel like the word depression has lost meaning; in terms of how we think about someone outside of ourselves experiencing depression. I feel, by saying I’m depressed, I’m downplaying the realities of how I actually feel. When one is depressed don’t assume that they’re “just” depressed. When I’m depressed, I’m not just sad, and sulky. I’m drowning, I’m suffocating, I’m torturing myself. A ghost whispers reasons for why everyone would be better off without me, haunting my thoughts, overshadowing rationality.

I can’t even say in public how I really feel at times, because sometimes I’m not ready to put my freedom in jeopardy. Why do people suffer in silence? Because we can’t be honest. And when we can it’s for one hour twice a week at max with a therapist, who we get showered and dressed up for and smile and say I’m fine. We might say we’re depressed, but we know the keywords to avoid the therapist from being legally obligated to institutionalize us.

I have a secret though. I do have someone I talk openly about my depression with, when it’s taken me over. I can say whatever I want, and instead of being whisked away with a shot if Thorazine in my ass, this person reminds me of all the reasons my thoughts are not logical or truthful. It’s an ongoing open discussion on equal terms. I’m respected enough for this person not to placate me with pats on the head and compliments, or vague hopeful expressions “you’ll be fine.” I’m respected enough that this person trusts that I’m being wholly honest, allowing me to say even the hot button keywords, trusting that I will answer the question “do you need to go to the hospital” honestly. Because I would.

I wonder how many people didn’t have that person who are now gone, and if they had, would they still be around. You have to understand, that while therapy is helpful, a therapist is not available at your beck and call. Sometimes depression can’t wait for a week until your next appointment. Having that next appointment can feel like a lifeboat, and be something to hold onto, but in the meantime, no one should have to hesitate voicing their emotional state. Why is therapy useful? Because it provides professional guidance. Why should everyday people listen to a friend gush about feeling hopeless? Because to be genuine is to accept all facets of our being. It enriches relationships, garners honesty, trust, and when it comes down to it, it punches holes into the wall that may be crushing your friend.

I may be depressed at times, and yes, it is like part of my mind is Clockwork Orange, forced to stare at unsettling images on repeat. But I’m also still here, I’m still able to listen, and think, and grasp that logical hand reaching under the pile of my emotional rubble. (fuck this, I just said emotional rubble. WTF.)

I know if I didn’t have that hand to grasp, I’d be a fading memory.

I’m angry because no one should have to sink in silence. I’m angry because our society is built on “pulling up your big girl panties” “be a man” “suck it up” “How are you? – I’m fine, how are you? – I’m fine” I’m angry because people don’t realize that when you’re drowning, you don’t want someone to tell you your pretty, or offer a hug. You want to be able to yell out “THIS IS HOW I FEEL” without fear of judgement. And for someone to respectfully acknowledge that feeling and give us reasons, not superficial, for why how we feel is temporary, or doesn’t add up. Offer real advice, not go have some chocolate, or take a bubble bath. We want you to talk openly about any experience you’ve had with depression, showing us a) you’re capably empathetic b) how you got through it c) why you’re glad you did d) proving to us that you can handle our honesty in return.

And absolutely, yes. Sometimes, we are too far down the spiral, and we need help now. And I think the majority of us would be willing to admit it, if, we have that logical reasoner reminding us that a few days, weeks, in hospital is worth it.

If someone trusts you enough to tell you they’re depressed, trust them enough to understand that they are reaching out for that logical hand. Ask where they are, on scale from sad to suicide. Why is that scary? Unless they have proved otherwise, trust them no matter their response. Give them meaningful reasons for why they need to hold on… loved ones, pets. Realize they may be feeling like their doing a service by removing themselves from life, and tell them that it’s natural to feel overwhelmed while in a depressive state. Remind them of the times they were contented, and promise that if they keep talking and holding on it will eventually go. Ask them to promise their honesty. Tell them how much it would affect you if they did something undoable. Do encourage therapy, and having an honest talk with a doctor. Tell them why they shouldn’t feel ashamed, tell them they are not alone, tell them there is help. But most of all really listen.

If that is too much to ask, find someone you trust that can help, and if there is no one, urge them to call a doctor or therapist, or both. And in extreme case, go with them and hold there fucking hand while they admit themselves into inpatient.

For me mental illness is something I have to live with for the rest of my life, and I may not always be one step ahead, but actively, openly, having the freedom to express brutal honesty is a huge part of managing myself. For me, having bipolar means I need an active support network. And to honestly, actively check in on my mental whereabouts.

But even if temporary depression, or seasonal depression, postpartum depression, please don’t sink in silence. Someone out there understands. Internet support groups, real life support groups. Find someone to talk to, a friend, a doctor, or therapist. It’s not your fault.  It’s no different than having a physical illness, but in your mind. You know how you feel like you’re going to die when you have the flu? Well you’ve got the brain’s version of the flu. It’s unbearable at times, and feels never ending while it’s there, but it does go away. Sometimes medication is necessary, like insulin is necessary to a diabetic. Being depressed has nothing to do with strength or weakness, it’s a condition that millions of people live with. And there are lifesavers everywhere waiting for you to reach out for that logical hand. But in order to find it, you have to shatter the isolation of silence by being open and honest until you get whatever kind of help sufficient enough to save you from yourself, until you don’t need saving.

I’m tired of hiding. I’m tired of this uptight cupcake, ironed pants social indoctrination that allows us to suffer in silence. People don’t want to hear I’m depressed because, somewhere along the line we were taught that depression is personal. Don’t mistake me, I love things about life too, social niceties can be exactly that, I’m not always depressed, typically I am in good spirits. But how refreshing would it be to say “Hey guys, I’m feeling really low tonight” without scaring people, or awkwardness, or regret, and to get real feedback and understanding.

It would be awesome to live in a time where I could sit beside a stranger on the bus and when asked how I was, casually say “I’m down” without it putting a damper on the mood. The honest truth is that I’ve never met anyone who hasn’t suffered from depression, whether it be circumstantial, or chemical. Depression might be dampening the mood of the depressed person, but if someone tells you they have a headache, you don’t get a headache too. And you automatically know to say, do you have any ibuprofen? When people can talk about depression out loud, openly, and honestly it takes it from an emotional place that is unstable, and puts it into a reality that is like looking at it in third person. Verbalizing emotions enables logic to enter the paradigm. In a society that welcomes honesty, we could speak candidly about our real emotions, and in return feel less isolated, we shouldn’t have our realities swept under the rug because they don’t fit into a unicorns  asshole.

In a culture where depression was accepted into open, everyday conversation, we would know to say; what are your symptoms and be able to determine how to proceed from that, just as we do with a headache, or a sinus infection.

If you’re sinking in silence, be assured there are many, many people out there who understand, even people who don’t know you are capable of caring, so many it may surprise you. Tell someone you trust, or announce it to the world. If you don’t have insurance and think you can’t afford a therapist, let me tell you I paid my last guy $15 per session, a professional. Often times therapists will work with you on a  sliding fee scale based on your income. All you have to do is ask. And if that feels overwhelming there are suicide hotlines that you can call while curled up in bed, still not showered at 2pm. The important thing is to take those streaming negative thoughts and emotions and put them into words, push them out, realize that allowing yourself to drown is scarier than admitting you need help.  The longer you go without speaking out, the deeper you go, and you are putting yourself in danger by letting that happen.  Believe me, someone out there cares. As Mr. Rogers said, When he was a boy and saw scary things on the news, his mom would always tell him to look for the helpers. Yes, there might be people who may run away, but there are also people who will come running. But they won’t know to, unless you tell them.

Suicide takes the lives of nearly 30,000 Americans every year.

Please don’t sink in silence.

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Managing Me: A New Perspective

I’m as healthy as I can muster at the moment. I go to bed early when I can and I try to smell the roses as often as possible. It’s not easy, but I try. And isn’t that what any of us can do? In this topsy-turvy world, we can keep on plugging away and working hard while managing the prospects of our goals and dreams. Sure – a synapse could get angry at me and this house of cards could tumble. But I can only do what I can – take my regime of medications, stay healthy and monitor myself regularly.

Waiting PLace graphicNever thinking it could happen to me, here I am in what Dr. Seuss calls “The Waiting Place” – as described in his beloved story, “Oh, the Places You’ll Go!”

My compliancy and ability to cope with life’s stressors and struggles have made me the person I am today. I have no regrets and harbor no shame as my path has led me to today – a challenging but adventurous whirlwind of a life complete with family and professional identities. But being “in transition”- moving from Massachusetts to Virginia – has been trying.

But in all reality, I’m currently in an uneasy place. As the illustrious Dr. Seuss describes, “You can get so confused that you’ll start in to race down long wiggled roads at a break-necking pace and grind on for miles across weirdish wild space, headed, I fear toward a most useless place – The Waiting Place . . . “

Yup, Dr. Seuss perfectly describes my current life predicament. But perspective and living stress-free are two seemingly meaningless concepts to me at the moment.

I don’t feel symptomatic, but something’s got to change. I recently learned how saying ‘no’ without guilt could be the cornerstone to de-stressing my daily life.

While I manage a diagnosis of Bipolar I, I haven’t lived my life of late without much concern of another episode. I’ve prided myself in my ability to “roll with the punches” and accurately discern between me-being-me, versus, me exhibiting symptoms of my bipolar disorder.

But there have been too many punches to count over the past few months and I’m nearing exhaustion by the work and stress. My new psychiatrist told me the other day that I had to “slow things down” or I risk relapse.

And just how does one “slow things down” when the chimes of responsibility ring too loudly to stay calm and at ease? I’m not good at it, but consciously knowing what to deem ‘a priority’ is paramount. Not an easy lesson to learn.

That said, my plan has been to give it a concerted effort. The original thought was that once our son started Kindergarten and we were on the road to closing on our new house in Virginia, I’d take time for me – get all those doctor’s appointments tended to now that I’ve established my psychiatric team, re-ignite my yoga practice and slowly but surely practice mindful meditation. This was my plan, but as with all good plans . . . life happens while you’re planning!

Within the span of a week after our son Daniel started school, I flew North in a flash to move a cherished family member from Massachusetts to Virginia. 70 years of life packed in neat boxes and accurately labeled for delivery to an assisted living facility close to our soon-to-be home. We had plans for family to visit and stay with us at our small transitional apartment for Daniel’s birthday, which came on the heels of this emotionally charged move. A great family visit but ultimately yet another straw in my stressed out, emotional haystack.

Another aspect of the plan was for me to land a monetarily fruitful job after closing on our new house in just a few weeks. Despite popular opinion, I’ve shelved that search until the time feels right. It triggers stress to think that I’m not contributing financially to the family, but what feels right must be true – I’m too overwhelmed to add another stressor.

Described so concisely, it may seem difficult to understand why this period has been so stressful. As I reflect, I realize that flying back ‘home’ was traumatic on many levels. It was too soon. Too much home sickness was going on to add sorting memorabilia and clap trap. And then our sweet angel turned six. Six years of successful responsibility and parenthood. I may snap and yell sometimes. Often I can be stubborn and persistent about an idea. Other times I can lash out meanly when I don’t meet my objective due to something outside of my control. But that’s me coping with life. I’m also a great Mom, loving wife and outspoken advocate for mental health awareness. Some might say I could go on . . .

The answer is there are no medical ways, per se, to march on. I’m compliant – just stressed out. So a mindset shift is what’s necessary. I’ve been able to control my perspective in ways I never deemed possible. My husband often says, “it’s an adventure you’ll learn from” – and I want to throw a china plate at him. But it’s true. This past month has been a trial – both fun and stress-filled, but thankfully always with support. Even if said support and attention makes me more wound up, the reflective comfort of love makes the struggles worth bearing and the compliancy a must. You know – family can drive you to distraction, but there’s no crew you love and respect more.

Yes – I have a few doctor’s appointments this week and I’m going to my first yoga class in years. Happily, we’re preparing for the final leg of this six month saga and will be moved into our new neighborhood for Halloween. Daniel has given me the assignment of transforming him into a tree for trick-or-treating, because he said: “I love looking at trees”.

So isn’t all this turmoil and strife selfish? Trying to rest and skip on seemingly unnecessary responsibilities instills a deep sense of guilt. But I’m learning. Yes – I need to care for Daniel daily. Yes, I need to assure my husband is connected and we’re on the same page, especially when he works very often from 8am-11 pm daily (including weekends). Yes, it feels like family has encroached upon our new safe haven for change and growth, but in all honesty, I’m blessed.

I’m as healthy as I can muster at the moment. I go to bed early when I can and I try to smell the roses as often as possible. It’s not easy, but I try.

And isn’t that what any of us can do? In this topsy-turvy world, we can keep on plugging away and working hard while managing the prospects of our goals and dreams. Sure – a synapse could get angry at me and this house of cards could tumble. But I can only do what I can – take my regime of medications, stay healthy and monitor myself regularly. Be mindful, I’d say.

The future is bright, for that I am sure. The path to that well-lit adventure is soon to be better understood – and managed.

 

 

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Primary Colors

If a thought disorder is a prison wall, then I’m determined to scale it. With conversation.

red green and blue eyeI look like any other customer in the coffee shop, except my jeans are fire engine red, my hoodie is lime green, and I’m wearing blue and orange platform sneakers. Not by design, just because. In a sea of suits and glumness, I’m a lighthouse of happy. Today. In this moment. Right now.

On those days when I don’t feel fractured and gray, I let my colors create a cushion between me and the Big Bad. Nobody needs to know that I live with schizophrenia, but if it comes up I’ll talk about it. Mental illness is a part of the fabric of life. It’s just dyed a different shade of dealing.

There will always be rough days, so I cherish the times when I’m doing well. I’m not sure how I know the difference—I just know what it’s like when it’s not scary. I have a foot in two realities, but I’m not carabining for survival. I’m just standing in line. Like a normal person.

I always go to the same cafe. The bakery goods sparkle and the coffee smells like earth. It’s enchanting and simple, another pillow between my expectations of an apprehensive public and the symptoms that betray me.

Familiarity and patterns keep me safe in the presence of sameness. In the rhythm of repetition, I create a space within me where I don’t shut down. Something happens. Something better than gray. I open up.

I ask the barista how their day is going. What for others is a simple gesture can be a major effort for me. If a thought disorder is a prison wall, then I’m determined to scale it. With conversation.

I comment on the weather, they compliment my clothes. I mention Bring Change 2 Mind, they share a story about depression. Schizophrenia comes up and we talk about it. They’re sympathetic and friendly, and in that moment unafraid. A connection is made because we both took a chance. I walk out of the shop feeling, to quote Dr. Mark Vonnegut, “Just like someone without a mental illness only more so.”

When I find myself struggling, I write my thoughts down so that I can discuss them in therapy. It helps having notes to refer to since I deal with a memory deficit. Talking about my disorder and how it affects my life is more important than what I think people think of me.

Before I started taking medication, I asked my doctor every question I could think of. I wanted to be sure it was safe. He helped me monitor its effectiveness. This has proven to be worthwhile; I’m more willing now to discuss different meds. I know there’s a path I need to follow, and I’ve learned that I don’t have to walk it alone.

Friends and families of people with schizophrenia can sometimes preempt a relapse by catching some of the red flags, like increased isolation or changes in sleeping patterns. Keeping track of previous symptoms might offer clues about what to watch for in the future. Maintaining a record of medications taken, how frequently, and at what dosage, is very important.

It might be helpful to have their doctor’s and therapist’s numbers on speed dial. To ensure the best course of treatment, be prepared. As people who care, you’re not alone—professionals are there to help. It’s teamwork.

Behaviors based on hallucinations, or statements stemming from unusual beliefs, might seem strange or off-putting to you, but to your loved one with schizophrenia it’s all very real. The trick is not to challenge the delusion. Instead, talk with them about things you have in common, topics of interest other than the one they’re fixated on. There’s no right or wrong here, just one person communicating in color to another who’s seeing in black and white. Remember—at the core of your relationship is love. You are their lighthouse in a tempest of fear.

It may be as hard for you as it for them to accept their diagnosis, but surrender affords you the necessary strength to discover hope and take action. Help them to establish a treatment plan that works. Otherwise, the basic need for human interaction might fall by the wayside, and stigma and discrimination could discourage them from a healthier, happier life. A life filled with color by design. Just because.

There will always be rough days. Cherish the times when your loved one is doing well. Mental illness is a part of the fabric of life, and gray is just another hue on the spectrum.

 

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What Anxiety Has Taught Me

They say that people come into our lives for a reason, and I am now a firm believer of that. It is because of their support I can now take great pride in the fact that I am a much stronger person - an essential quality when dealing with the effects of mental illness.

Krista Sept 2015 picture_oWhen first diagnosed as being ‘mentally ill’ I genuinely believed that my life was over. I could no longer see myself moving out, gaining a degree, having a career and starting my own family. To me, ‘mental’ was a term used to describe the deranged psychopathic killers you see in those cheesy American movies, not an average twenty year old female who experiences nightmares after watching Crimewatch.

However, despite the given ‘title’, what I can now say is that mental illness has made me strive for more. Before falling ill I had lost all direction. My assignment grades were not reflecting my true ability, and I was skipping lectures due to hangovers and wanting to spend time with my friends. That has all changed now though as I graduated with honours in July 2014 and am now in the second and final year of my Psychology Research Masters Degree. I have never been more focused and determined, as my dream now is to pursue my PhD and become a published author and Cognitive Behavioural Therapist – something I never would have considered before experiencing and living through the disorders.

Mental illness has also made me a healthier person, as I have given up alcohol – something which, at one point, was becoming a problem. Nights out were chosen over shifts at work, as I regularly called in sick and let my colleagues down. I no longer cared, there, I said it. I was more interested in impressing my friends with how many shots I could neck, or how much alcohol I could consume without passing out. I was invincible, or so I thought. I would go to house parties without considering the dangers, and was even mugged and had my drink spiked while inebriated. I was headed down the wrong path, and it was a scary time for all involved.

Without becoming ill I would also have missed out on the opportunity to meet a number of amazing people, and form closer bonds with those already in my life. I transferred courses due to my dwindling grades, and it was then that I made a few genuine life – long friends, and built up a new support system. They say that people come into our lives for a reason, and I am now a firm believer of that. It is because of their support I can now take great pride in the fact that I am a much stronger person – an essential quality when dealing with the effects of mental illness. Before, I was, well, a ‘doormat’. I lacked the ability to voice my opinions and stand my ground, allowing my then friends and strangers to speak over me and sometimes treat me very poorly. This has all changed though as, while I remain a caring and compassionate person, I live by the motto that I am in enough emotional and psychological pain, why should I empower others to add to that?

Mental illness has also improved my relationship with my brother, Matthew, which, to me, is the biggest thing of all. While we have always been close due to him having taken over legal guardianship of me after our mum passed away when I was ten, there were times in which our bond was slipping and we could feel ourselves drifting apart. This has all changed though, as now we are closer than ever. He is not just my brother, he is my best friend. I would not be standing without that man, and, for that, I am eternally grateful.

So, yes, mental illness has turned my world upside down. It has left me isolated, constantly detached, scared of people, and scared of leaving my home. However, it has also made me strive for more, it has changed parts of my life for the better, and it has made me a better person. While I would give anything for this to go away and for me to be better, I would like to take some of the power back by saying thank you to my anxiety. I do like to believe that a higher force, my guardian angel maybe, has set me this ‘challenge’ as a means of steering me in the right direction, ensuring that I am destined for bigger and better things as opposed to where I was headed. It helps.

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Bridging the Gap

My youngest daughter graduated from high school in June. A milestone? Yes, but also expected, right? Kids are SUPPOSED to graduate from high school. However, life doesn’t always follow our expectations. Just ask any parent raising a child with a chronic illness. In our case, mental illness. There is no doubt that silver linings exist, especially when I take the time to notice them. Every struggle, every crisis, every setback brings the promise of immense joy when success finally comes.

My youngest daughter graduated from high school in June. A milestone? Yes, but also expected, right? Kids are SUPPOSED to graduate from high school. However, life doesn’t always follow our expectations. Just ask any parent raising a child with a chronic illness. In our case, mental illness. There is no doubt that silver linings exist, especially when I take the time to notice them. Every struggle, every crisis, every setback brings the promise of immense joy when success finally comes.

In terms of numbers, mental illness has racked up an impressive tally sheet for my pint sized, talented, smart, compassionate and independent thinking daughter. 5 hospitalizations, 2 stays in residential treatment, dozens of medication trials, 100’s of therapy sessions and months and months of missed school (almost half of middle school and more than a year of high school). So seeing our daughter walk across the stage, wearing an honor cord to boot, standing with her peers, (some of whom we’ve known since pre-school days) had me sobbing with tears of joy, my heart bursting with gratitude and pride.

But there was also a heavy weight of sadness and fear that crept in as I listened to the student speeches – a mixture of hope, vision and plans for the future, punctuated by long lists of the merits and opportunities that high school had bestowed on the class of 2015. Little of this seemed to apply to my daughter, and, I suspect, there were likely a few other graduates for whom the last 4 years had been a struggle, perhaps even an all-out war.

Don’t get me wrong, I wasn’t bitter or jealous. I wasn’t disappointed and I had few regrets. But the reality was that my daughter (and many kids fighting mental illness) was on a different playing field. Maybe even a different planet. Rather than plowing through Honors and AP classes, writing for the school newspaper, competing at state for track, forensics, tennis or football or being voted prom king or queen, my daughter’s senior year accomplishments read something like this:

  • Missed only 3 straight weeks of school during most recent bout of major depression.
  • Took the initiative to research and assimilate ways to combat severe anxiety.
  • Started setting alarm clock to wake up in time for school independently.
  • Requested help when symptoms of eating disorder flared up and weight dropped.
  • Advocated for herself at IEP meeting.

Considering that 2 years ago I wasn’t sure if my daughter would survive, let alone graduate, these accomplishments were, and still are, a big deal. But I am also reminded that we have a long way to go. And as members of the Class of 2015 head off to points near and far, following their dreams, moving towards independence, I feel a twinge of pain knowing that my daughter’s journey has detoured. Getting through that last year of high school was a marathon between completing 2 years’ worth of credits, continuing to work on physical and mental health, and re-entering the ‘real world’ after residential treatment. Adding on ACT exams, college visits, applications and decisions was a recipe for disaster. Everyone agreed that a year off between high school and whatever was next was essential.

Thankfully (perhaps) it’s become fashionable for high school graduates to take a ‘gap year’ – a chance for them to explore, learn, challenge and grow, to become better prepared for a successful college career. The American Gap Association provides accreditation to gap programs, offering legitimacy and opportunities to parents and their ‘gappers’. There is even a ‘Back-a-Gapper’ scholarship fund to help offset the cost of these gap year experiences.

Nowhere on the website did I find anything remotely like a program to meet my daughter’s needs. I’m not surprised, as we haven’t fully identified what those needs are, let alone how to create the right experiences. Maybe, somewhere down the road, someone will put together a program designed to support students like my daughter.

If we’re lucky, this year will be not so much about being a gap, but rather bridging the gaps that formed while my daughter, and our entire family, were fighting an invisible illness. These include:

  • Socialization – Missing big chunks of school during the teen years meant missing out on the awkward, painful, exciting, intense drama of friends and rivals. BFF’s, boyfriends, girlfriends, gossip, trust, betrayal, dances, sports tryouts, wins, losses, awards, missed opportunities, developing interests and talents, decisions, mistakes, saying ‘yes, saying ‘no’.
  • Academics – It’s not just about catching up on math in order to do well on the ACT, it’s about learning because you have to, learning because you want to, studying, cramming, procrastinating, researching, prioritizing, collaborating, competing, asking for help, favorite subjects, waste of time subjects, cheating, plagiarizing, consequences, grades, intrinsic motivation.
  • Life Skills – Job interviews, resumes, cooking, shopping, bargain hunting, saving, goal setting, budgeting, bank accounts, investing, cleaning, traveling, balancing a check book, changing a flat tire, pumping gas, installing a dimmer switch, troubleshooting a wi-fi problem, laundry, planning for the future, living for today.
  • Self-Esteem – Trusting yourself, surviving (and even thriving) a disappointment or failure, recognizing success, appreciating differences, respecting yourself, respecting others, forgiving, learning that your illness does not define you, being of service to others, earning praise, showing gratitude, making a difference.

How do we accomplish all of this? I wish I had the answer. However, as I read back through this lengthy list I realize that for all that my daughter has missed, she has also experienced so much. She may never have taken AP Physics or Honors World History, but she’s gained more insight than many people twice her age. She’s found opportunity and positives in a seemingly desperate situation. She’s taken risks, survived disappointment, challenged herself, developed patience, accepted help, faced her fears, trusted herself and trusted others.

The hardest part of this process is, honestly, in my head. My guilt, my sadness, my realization that just as I couldn’t ‘fix’ mental illness, I can’t magically create a condensed version of the middle school and high school experience. My daughter is healthy, strong, has a great support system in place and is perfectly capable of tackling new challenges and asking for help. The best thing that I can do is to let go. I can make suggestions, support new opportunities, encourage, listen and love my daughter. But then, I have to let go.

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I'm Right Here

Early detection might have made a difference in the quality of my life, but that’s not what happened. I went years without a diagnosis or treatment. People defined me as eccentric; it made my behavior acceptable. The conventional image of writers and artists was far more romantic than the damaging stereotypes attached to schizophrenia.

lost toyI’ve been trying to understand how people experience one another. When I watch them communicating it seems foreign to me. It appears effortless, but I know that’s not possible. There’s a history to it, a biological sleight-of- hand.

Human interaction carries with it a lifetime of social data. Decoding nuances of body language and subtleties of speech evolved out of necessity, one tribe to another, as we met along the road of life. So why do I find myself standing in the ditch?

The answer is social impairment—an unfortunate byproduct of many mental illnesses, and a key risk factor in mine. Schizophrenia is haunted by misunderstandings. Too often connections never get made.

I’d like to tell you that I’ve accepted this fact, and that I’ve overcome one of the most difficult aspects of living with this disorder, but I’d be lying.

I can’t always account for the nature of my symptoms, but I understand that they’re at the core of the disconnect. My occasional inability to distinguish what’s happening from what’s not creates a fluid barrier of uncertainty. Compartmental speech is not my forte. Delusions of reference form the content of my beliefs. While initially entertaining to some, my pension for free association becomes rapidly annoying to others.

Medication helps to slow my synapses, and therapy enables me to consider a common vantage point, but beyond that, the data collected in my disordered mind does little to enhance my attempts at socializing.

Working memory deficit makes conversation challenging because I’m not always present in a commonplace way. Depersonalization and derealization make me question the value of being here. We’re told to let experience be our guide, but when nothing is anchored in reality, reliability becomes random at best.

In those moments when I’m not capable of thinking linearly, when I’m dealing with audio hallucinations, when I have no point of reference other than the obscure associations my disorder creates, I unknowingly risk my connections with others. I assume that we’re exchanging social cues when we’re not. I have no innate capacity for discerning this, so I study you for clues. I imitate your mannerisms. And while I sense that I’m not perfectly in sync, I wonder—to what degree do I appear alien?

Early detection might have made a difference in the quality of my life, but that’s not what happened. I went years without a diagnosis or treatment. People defined me as eccentric; it made my behavior acceptable. The conventional image of writers and artists was far more romantic than the damaging stereotypes attached to schizophrenia.

Depictions of violent madmen persist, and the resultant stigma triggers a reactive denial in me. I’m not that monster. But if I trust you, and you believe the cliché, then we both unwittingly uphold the status quo, inviting shame and depression into the picture. Framed that way, I am the beast. From there, things just get ugly, which is why even the simplest contact is so important to my survival.

Statistics show that nearly thirty percent of people diagnosed with schizophrenia will attempt suicide. Unpredictable thought processes make intervention difficult, increasing the risk of successful completion. Meaningful relationships with family and friends could prevent this. It’s not without effort, but it’s possible and essential.

Making friends can be challenging for anyone. There’s maintenance involved: the provision of courtesy, respect, understanding, and kindness, without expectation of return. Living with schizophrenia presents a unique set of conditions. I understand that investments are necessary, but my symptoms can alter that perspective in a heartbeat. Keeping the factors in focus means I have to remain on point.

Schizophrenia is not something that most people can relate to. I’ve lost people I cared for, but it needn’t have been that way. Perhaps it was hard for them to understand how important they were to me, and how much they helped. Facing the challenges of mental illness together might have lowered their frustrations and allowed for better communication. Hindsight is always twenty/twenty.

I’ve had people tell me they were afraid to befriend me when they first heard that I had schizophrenia. Thankfully, for both of us, they took a chance and overcame their concerns. That’s what it looks like to advocate for change. Interacting one-on-one. Out of the ditch and back onto the road.

Those romantic images of poets and artists succumbing to madness may have appealed to my adolescent heart, but the truth is so much more macabre. Alien or alienated, isolation is not worth the toll it takes. I can’t imagine spending the rest of my life alone, but then again, I can. I’m not going to let it stop there. Reaching out is a risk I’m willing to take. For my health, my happiness, and for whatever follows. I’m right here.

 

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Our 5th Anniversary

These days, five years after the Grand Central Station PSA shoot, Calen, Glenn and I continue to speak out. We have spoken to thousands with only the minimum of nerves; practice makes perfect. The word ‘stigma’ is widely used and I’ve seen the word pop up many times in articles and newsletters and other organizations. This is a battle that isn’t about to stop. I’m proud to say that we are, literally, bringing change to minds.

Can it really be? Have five years really gone by? I know the Grand Central Station PSA was shot near the end of 2009 and Glenn got BringChange2Mind.org going in 2010 but that doesn’t seem to be as many years as this message feels right now. We have accomplished a lot and then again so much more needs to be done.

Stigma, unfortunately, is still rampant here in the States and throughout the world but I have heard hundreds of stories that attest to the fact that our work has impacted many.

Stigma is prejudice, shame. Even on my computer dictionary stigma is defined as “a mark of disgrace associated with a particular circumstance, quality or person: the stigma of mental disorder.” I can’t believe they used mental illness for the definition, but I’m not surprised.

I remember the first time I stood in a public place and, because my t-shirt said ‘bipolar’ on it, everyone around me knew my shame. And everyone was looking at me because I was standing with Glenn. I was standing with Glenn and Ron Howard was behind the camera and I kept forgetting my lines. I wanted to sink into the floor. After a few tries Ron Howard got a piece of cardboard, wrote my one line on it and taped it to the bottom lip of the camera lens. I tried hiding behind my hair but all that did was show me, in that Grand Central PSA, with hair covering half my face and it looks terrible. When we took a break I crumpled into an armchair. There’s an echo inside Grand Central Station and the noise was reverberating inside my head.

When Glenn asked my son, Calen, and me to do this I had no idea what it would be like. Curled up in the armchair I wished I wasn’t there. But three things kept me going: Calen, my daughter, Mattie, who came with us from Montana and my tiny dog, Snitz, who was my Service Dog. Snitz was only 4 years old at the time and was a great comfort. Calen lives with schizophrenia and that’s what his t-shirt said. I was worried about him. Mattie was a comfort to us both. She is a sweet, strong young woman and I leaned on her. And of course Glenn was there. She was worried about all of us!! But we did it. WE DID IT!!! And when the PSA was released it made an immediate impact in the world of mental health. No one had ever done something so bold and the fact that Glenn and Ron Howard were instrumental in the production was bolder still. Glenn put her reputation on the line by helping Calen and me and all the mentally ill like us.

Two years before, I had asked my dear sister to help, somehow, with getting rid of the stigma that we, as the mentally ill, face on a daily basis. At the time I wasn’t thinking of just myself. I was talking mostly about Calen who was abandoned by all his friends when he came home from the hospital, and before that actually. I didn’t understand why we, as a society, make jokes about the mentally ill. We know it’s in bad taste to make jokes about people suffering with cancer or heart disease. Who has suffered from cancer and endured insults. Insulting someone with mental illness is not frowned on, calling me crazy or insane or mentally deranged comes so easily to the lips of many. It’s that damning attitude that we must continue fighting and fighting and fighting.

These days, five years after the Grand Central Station PSA shoot, Calen, Glenn and I continue to speak out. We have spoken to thousands with only the minimum of nerves; practice makes perfect. The word ‘stigma’ is widely used and I’ve seen the word pop up many times in articles and newsletters and other organizations. This is a battle that isn’t about to stop. I’m proud to say that we are, literally, bringing change to minds.

I must give voice to something that we all find disturbing: the mentally ill involved in shootings. All I can say is that these people are a tiny minority. These people needed help a long time before they act out. It’s imperative that we have community mental health centers that are available to all.

I hope the next five years see even more acceptance of mental illness. For those of us who live with these illnesses, it is our responsibility to take care of ourselves. And I hope the public understands, once and for all, that stigma is prejudice. We will be comforted by their acceptance.

 

 

 

 

 

 

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Being Human

I make the mistake of trusting people to be unbiased in their thinking about schizophrenia. Perhaps I’m being naïve, but I still approach social interaction as if the playing field were level. I trust that people will show me the same courtesy they would a person without a mental illness.

handI make the mistake of trusting people to be unbiased in their thinking about schizophrenia. Perhaps I’m being naive, but I still approach social interaction as if the playing field were level. I trust that people will show me the same courtesy they would a person without a mental illness.

As a rule, I don’t withhold information when people ask me how I’m feeling. I shouldn’t have to. Yet even with friends who know that I have this disorder, the conventional media-imposed image of schizophrenics trumps any transparency that I might offer in confidence. If I default to that hackneyed answer of “Fine, thanks,” it tells them nothing. Instead, it affords a polite, illusory protection from dealing with the socially uncomfortable fact that I have a brain disorder. In this age of ubiquitous information, there’s no valid reason for that.

One in four people worldwide will be affected by mental illness. Through various campaigns and education, public awareness of the difficulties faced by people living with mental health disorders is increasing. The grassroots movement to eradicate the discrimination and stigma surrounding mental illness is slowly, but certainly, establishing a foothold. Those one-in-four can rest assured that the days of justifying their diagnosis to anyone for any reason is on the wane. Not overnight, mind you, but steadily, one healthier moment to the next, and eventually on to that more level playing field.

It could be that because the natural schematic of the human brain contains the capacity for interpreting the basic states of joy, sadness, anger, fear, trust, disgust, surprise, and anticipation, society can more readily accept that when brain chemistry is imbalanced, the stability of the individual is at risk. These scientific truths form a sympathetic bond.

We learn from experience. Fire is hot – we don’t touch it a second time. Traffic cones indicate a detour – we agree that the bridge is out. When any of us feel overcome with fear, panic, sorrow, or uncertainty, we know instinctively that we need help. In no way would we want to experience those conditions alone. With rare exception, compassion is ingrained in each of us; we share a chemical continuity. Because the fire will burn us, because we need to cross that river, we learn to work together. We depend on one another to extend a helping heart and hand. This is the essence of being human.

The commonality of our general physical and mental health allows us to comprehend what another might be going through – unless we’re addressing the one percent of the world’s population who live with schizophrenia. A more uncommon ground you’re not likely to find. This is where the sympathetic bonds hold no sway, where uninformed opinion and stereotypes prevail.

That level playing field? The one our advocates and followers are working so diligently to resow? It’s coming together fine for the team of eight basic emotions, their chemical balancing, and the tolerance and kindness of others. Deservedly so. Future games of Life depend on it. But when the question of how I’m feeling is answered with the honest, albeit occasionally surreal, illustrations of a disordered thought process, the sometimes alarming nature of my responses cut the brake lines of the conversation and send it careening headlong into the Fitch Barrier of dismissiveness and cruel judgement.

For all the hope and dignity that I champion for every individual affected by mental illness – client, provider, family, or friend – when it comes time to show myself the same consideration, too often I flinch. I buy into the humiliating conventional images of schizophrenia and ignore the life I deserve, so deeply ingrained is the hurt.

Upon receiving my diagnosis I hid the news in shame. Yet not long afterwards, I took a cue from other human rights advocates, and came out with full disclosure. Why not share who I am and what I learn at every turn? The answer became clear once I put myself out there. The stigma surrounding schizophrenia is more pronounced than for any other mental illness or disorder, not because those disorders are any less disruptive or challenging, but because they have an understandable context to which mentally “normal” people can relate. Schizophrenia does not.

Don’t get me wrong. I will stand side-by-side with anyone struggling with their diagnosis because I believe that every one of us deserves the respect that any person living with any illness receives. Our government, the public programs, and the educational system all need to be as on board and accessible for mental health parity as they are for every other disability, bar none.

At the core it begins with acceptance and understanding, starting right here within our small community. We need to be a unified voice to be heard and taken seriously, so that the next time someone asks you how you are, you can feel comfortable knowing that the culture has shifted to a practice of active listening and patient response. Because nobody, and I do mean nobody, wants to open their heart to someone else only to be told that they “should know better.” That “it’s not real.”

Make no mistake. It may not be their reality, but for me, it’s as real it gets.

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What's Wrong With Me?

Some friends are strictly online. That has been good, but troubling at times in converting that to time together in the real world. The online friends are important to me - I do not mean to diminish that. But.....I have not made any real friends. I have no one call me…or text me. I do not go out for lunch or dinner. I have no one to discuss regular topics.

I need your help.

Circumstances of late have caused and allowed me to reflect on my life.

Of course, the dark days of depression will always be a constant.

Last year, I was asked to present on my journey at a local “Let’s Walk and Talk” event in memorial of some men who died by suicide.

As I spoke I wanted to mention the length of time darkness ruled my life. Doing the math in my head, the number struck and I said it out loud – 16 years. I was even a bit overwhelmed by that number. The audience gave a collective “oh my” reaction.

After years of support and understanding from my immediate family; two years of weekly therapy; and help from two friends, I was able to get on a path to good health.  I wanted to get well too. We all worked hard with that common goal. It took years.

I now consider myself healthy and happy. But…..

I became quite active volunteering with several mental health groups. I helped in the kitchen preparing meals with one group. I was invited to serve on the Boards of Directors of two others.

I have presented on my journey at universities, corporate, and other local events. I have been part of the mental health training for the local police service the last 5 years.

I was even offered and accepted a position with the Canadian Mental Health Association where I stayed for two years.  Hey, I got paid!

I hadn’t worked since my breakdown, eight years prior. I wondered if I could function in an office environment, and whether I could make good decisions and exercise solid judgment. It took a few months, but I learned I could function again!

A couple of years ago, I met a wonderful woman, who was quite active, she is a runner and biker. So I thought it then important to get more physically fit, to match my mental fitness (and to try to keep up with her!). I joined the local YMCA. I am no athlete but I did enjoy going. The physical activity added to my good mental health too. I felt a sense of comfort in that I was taking steps to get healthier, especially as I get older.

This past winter, I was fortunate to have spent time with another woman – yes, I am ‘re-learning’ how to talk with women. That’s a topic for another blog perhaps! I have referred to her as “ the special one” in a few prior blogs. She is such an incredible woman. I would often look at her and wonder why is she with me? I was able to gain such additional self-confidence and self worth. But she is gone now. We knew it would end as she was in Canada for set period of time. She has since returned to London. But we grabbed onto those special moments together.

So when I set out this blog in my mind over the last week, I realized how active and involved I have been. It took great effort and patience though to get out of my room. I spent years isolated.

I have met lots of people, locally, provincially, and beyond. Such interesting people.

When I meet them at a conference or meeting, we have a great conversation.

Some friends are strictly online. That has been good, but troubling at times in converting that to time together in the real world. The online friends are important to me – I do not mean to diminish that.

But…..I have not made any real friends. I have no one call me…or text me. I do not go out for lunch or dinner. I have no one to discuss regular topics.

Please note though I have a wonderful life, I am happy, healthy, I have resources and means to live and travel

I read a lot. I watch Netflix. I just finished watching Line of Duty, rather good, intense, though it brought back some rough memories. I stay physically active. I laugh and enjoy my solo life.

But real friendship has alluded me.

I am in no way complaining here but merely looking for some ideas from all of you!

Perhaps I am the problem. I seem to be the common element.

So what do I do?  What suggestions do you have for me?

I am ok by myself….mostly.

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Where do I go from here?

Depression used to keep me down and I hated myself for being a quitter. I believed I was incapable of seeing things through. My MO was to give up on everything I tried to accomplish. Now’s there’s a new opportunity for me to push through another blockade of fear, defy the wicked lies of depression, stand up to the immobilizing impact of anxiety and, at the same time, tell you all about it.

August 25, 2015 Photo_PHILO-1566I want to tell you everything. Without hesitation. Without judgment. Without conditions. To spill my words all over the table and onto the walls, in big, bold letters, so there’s no confusion. I’m afraid of what you’ll think, or do, or say. But if I’m to be true to myself, and continue to be the voice of many who also know the destructive powers of depression, I know that I’ll be safe no matter the consequences. In spite of what I’ve liberatingly revealed these past years, I remain standing — and with more than just a dash of dignity.

My absence from blogging over the summer was intentional. Raw fear held me back from sharing the nitty-gritty details of my life with depression. The uncertainties, the weirdness, the out-of-nowhere self-deprecating thoughts cause me to continually question my actions and behaviors. I habitually weigh the pros and cons of describing the not-so-pretty details. So while I do want to tell you everything, the first thing you need to know is that I am afraid. Terrified that when I pull back the curtain and reveal the next tier of how depression seeps into the crevices of my brain, it will scare you away, for good. That’s when I know that I’ve crossed that line — the invisible border that divides my literary comfort zone from The Twilight Zone where distorted reality reigns.

Living with Major Depression and Anxiety is menacing. Four years ago, aware of the risks, I publicly disclosed my diagnosis. Past reveals had garnered unexpected and hurtful reactions from life-long friends, colleagues and family members. They’d made me feel ashamed for having depression, “wasting my money on doctors and prescriptions, as it was all in my head and I should just think happy thoughts.” My unrealistic expectations of being understood and receiving compassion were rarely met. Yet, on the flipside, there were some people who I underestimated in their ability to be kind. I’ve accepted that an individual’s reactions are unpredictable whenever and wherever I talk about my depression and anxiety.

While everyone has something going on that they’re struggling with on some level, it’s obvious that some personal battles are met with nodding heads of “approval” and others are immediately judged negatively. I’ve learned that you just don’t know who will surprise you with a hug and an empathetic anecdote, and who will charge away in the opposite direction as if you’ve just sneezed on them during flu season.

I’m a staunch believer that the more you educate others on what it’s like to have a mental illness, the less terrifying it becomes for everyone. But I’m also making the assumption that there’s a genuine desire for more information. Is it enough to know that depression has the ability to trigger a complete lack of motivation, self-confidence, self-love, self-fulfillment, the desire to socialize, the quest for joy and, at its most severe, the loss of hope? Is that general information satisfactory, or is more needed?

I can choose to tread within the safe perimeters of a swimming pool, go on telling you what you’ve heard before, or I can take a leap into unknown waters — letting you peek into the porthole of my brain, with greater intensity and granular depictions. My throat tightens at the thought of going to that place with you. For once I take the plunge, I’m not so sure it’s possible that I can go back to the safe place I’ve created for myself. It’s petrifying to imagine that there won’t be anyone waiting for me if I panic. My concern is that I will I be left stranded, alone, cold and shivering as a punishment for peeling off another layer, and once again putting my dignity on the line.

I want to tell you everything. It would be magical to possess a secret ingredient to wipe away the stigma of mental illness, but some human beings will never get it. They say they do, but they do not. Certainly I can’t blame them. I’m envious of people who have gone through life without knowing deep depression or crippling anxiety. But if I’m to be disparaged and rejected because of my honesty and openness about my illness, it’s time to take further action, because I deserve better. And so do you.

While one circle in my life gets smaller, there’s another that keeps growing wider. As daunting as it is to remain honest and direct, to stop now would be a disservice to thousands of remarkable people I’ve met along the way – including those who currently live with and manage a mental illness and their family and friends who continue on their journey towards knowledge and understanding.

Depression used to keep me down and I hated myself for being a quitter. I believed I was incapable of seeing things through. My MO was to give up on everything I tried to accomplish. Now’s there’s a new opportunity for me to push through another blockade of fear, defy the wicked lies of depression, stand up to the immobilizing impact of anxiety and, at the same time, tell you all about it.

 

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Reading the Signs

I’ve run my dignity through the wash so many times that it’s lost its color. I’m left with two tools, surrender and acceptance. They work, but it’s hard to claim success when I feel defeat. So I inquire, study, and strategize further to increase my mental health skill set. Prudence is proactive.

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“Knowing that you’re crazy doesn’t make the crazy things stop happening.” ~Mark Vonnegut, The Eden Express: A Memoir of Insanity.

In the past month I’ve experienced this firsthand, and it’s devastating. The conditions of my illness force me to rework my regimen, absorb new information, and try to wrap my disordered thoughts around whatever recent configuration I’m faced with. This would be hard enough if I were a normal person; living with schizophrenia exacerbates the situation.

I make it a daily practice to educate myself about my diagnosis. I’ve spoken with psychiatric and medical professionals, therapists and research scientists. I scour bookstores for knowledge not available on the Internet, and spend hours separating online fact from fiction. This is not an area of my life where uninformed opinion holds any credibility. It is a place where education and experience converge to create a whole picture. Not the bucolic paint-by-numbers of the shiny, happy people, but something grittier, more tangible, like puffy paint graffiti on a vintage gravel wall.

Nothing prepares me for the game changers. Emerging symptoms come with their own rules; symptoms that morph tend to sideswipe my balance. Coping is futile. I’ve run my dignity through the wash so many times that it’s lost its color. I’m left with two tools, surrender and acceptance. They work, but it’s hard to claim success when I feel defeat. So I inquire, study, and strategize further to increase my mental health skill set. Prudence is proactive.

As a child I had a habit of checking out, of living in my own world. Not unlike any other kid, until it became problematic. A month ago that trait resurfaced unannounced. Halfway into a dinner party, I blanked for twenty minutes. The person next to me asked if I was bored with their company. I made light of myself to ease the tension, but later that night I was baffled.

At another social gathering, seconds after taking my seat, the person I came with was tugging my sleeve, asking if I’d been enjoying a nap. I hadn’t fallen asleep, I’d been awake the whole time. But I couldn’t move, even to raise my glass. I couldn’t make sense of what anyone was saying. I couldn’t respond if I tried. Again I passed it off with humor, but the truth is I was scared.

In the past I’d exhibited the hyperactive aspects of catatonic excitement, a sort of purposeless, chatty agitation. I’ve had bouts of echolalia, where I communicate by mimicking random sounds or other’s speech. Repetitive motions and functionless movements common to stereotypy show up in my mix; not as intensely as a person with autism, but present nonetheless. Now stupor appears to be introducing itself. Time will tell.

More disturbing for me is the effect that delusional thinking has created in my life. After describing two incidents where I was publicly mistreated, my therapist asked me to pause and consider the circumstances I’d recounted. A store clerk followed me throughout the market where I’d shopped since I was a teen. I wasn’t acting suspiciously, but he treated me like a thief. Walking home, a person a block in front of me cried out for help, claiming I was a problem. I had a fresh box of cookies and a rental video, blissfully checked out, living in my own world. I wasn’t aware of anything until I heard the commotion. A city block away. It had to be my fault.

My therapist took the reigns. It’s a sunny summer evening. Other people are on the sidewalk. Why single me out at a distance of three-hundred feet? Shopping is just shopping; clerks restock the shelves. How are these incidents in any way related to me? Broken down like that, my worries made no sense at all. I was forced to consider another option: that my perception was inaccurate and things hadn’t happened that way. My thinking was informed through delusions of reference.

This is a common symptom of schizophrenia, the misinterpretation of reality. Every human mind bases every new response on elements of previous experience. Most minds connect the dots appropriately; not so the schizophrenic. Mine reached back through its history to a time of trauma and humiliation, and filled in the rest at will. Even with my therapist’s help, I felt confused and betrayed. Understanding that my mind was doing what came naturally gave me no relief. My illness was sabotaging the truth.

When it seems impossible to reach out, I have to remember that I could be wrong. I don’t have to do this alone. The constant hum of self-stigma’s undercurrent may orchestrate my interactions with the world, but I need to stay committed to managing my illness. Because knowing that I’m crazy doesn’t make the crazy things stop.

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Transparency

Today I wanted to write to those who support the ones who are fighting. Whether it is depression, bipolar, schizophrenia, or any of the many mental health disorders there is much to be learned. So if you are a solid rock by the side of someone who is fighting then I pass on these words of advice to you. I speak from the perspective of a person who has fought the battle and the person who now helps someone else fight it.

Transparancy photoI have a little secret to share. When I battled depression and PTSD I was not a wonderful person to be around. I was an expert at pushing people away and at times that included not being nice to those around me. I was confused. I was lost. I was in pain. I did not feel I deserved love. In fact I would often search for relationships with people I knew were not so nice and that would eventually hurt me. Now I sit on the other side of the table, as my daughter battles depression and anxiety.   It is one of the reasons I choose to be transparent about my past battles. Today I wanted to write to those who support the ones who are fighting. Whether it is depression, bipolar, schizophrenia, or any of the many mental health disorders there is much to be learned. So if you are a solid rock by the side of someone who is fighting then I pass on these words of advice to you. I speak from the perspective of a person who has fought the battle and the person who now helps someone else fight it.

The first thing to remember is that the person you love and care for is not defined by their disease. Inside there is an amazing spirit who understands the complexity of what is happening to them and does not always like it. Many times they wish they could get rid of the medicine, put on a smile, and feel like they recognized themselves. There were so many times in my past that I would look in the mirror and wonder who was looking back at me. My hair disheveled, cloudy eyes, and streak marks from crying so much that day. I would wonder when the old me would return or if I would always be stuck in this body. Two of my suicide attempts in my college days were actually not, in my distorted mind, attempts; but was me thinking if I took a bunch of my anti-depressants then I could be happy again. I just wanted the version of me stuck inside to be released. Inside I could hear the little voice screaming, but it was never allowed out.   I was not my disease, but it was a part of me.

Secondly, there are times the person you care for may try to push you away. Do not take this personally. It is not meant that way. Simply speaking there are times that a mental illness can overwhelm those who are battling it and they do not want to take others on the journey with them. For me I had a fear of hurting those I loved. I had such a difficult time seeing past my pain and the feeling of hopelessness, that I did not want others to feel those emotions too. I wanted them to live their life fully when I felt I could not. So I would push and at times that meant bringing others lots of pain.

Thirdly, sometimes you may feel like walking away because the one you care for pushes so hard or you may not recognize them. If you need to take a walk do so, but please return. We all need space to breath at times and that will be understood, but if you return it allows those you love to see that even in the darkness there is someone who cares about them. Those who have mental health disorders do not push people away because they hate them. They often push because they love them and fear hurting them by taking them along on the journey.

Fourthly, educate yourself. If your loved one, or the practice they visit, will allow you to attend appointments with them then please do so. Research their diagnosis and understand it. The key to decreasing the stigma that exists and being a knowledgeable support person is education. As a support person you may not ever understand what it is like to live in your loved ones shoes, but by educating yourself you can come to understand how best to work beside the one you love. Educate yourself on the medication they take and the various aspects of their mental health disorder. This may help you to recognize any triggers that may increase symptoms or various side effects of the treatment they take.

As a support person to someone battling a mental health disorder you will be one of the most important people by their side. During the darkest of days or the toughest moments you will be the one that makes the difference. You may not always get a thank-you spoken to you, but I can guarantee that you are very much appreciated. Be transparent. Be honest. Believe. Thank-you.

This post is dedicated to my husband and my family whose support was often pushed away, but whose belief in me allowed me to win my battle and be where I am today.

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I dunno. Lincoln was depressed, how’d he do?

Being open about mental health is hard enough when you are doing it to your dog, let alone to your boss or client. But, as my daughter can attest, you spend more time with the people you work with than you do your own kid. And there, for the obvious reasons, is where most people try to keep their mental health a secret.

Being open about mental health is hard enough when you are doing it to your dog, let alone to your boss or client. But, as my daughter can attest, you spend more time with the people you work with than you do your own kid. And there, for the obvious reasons, is where most people try to keep their mental health a secret.

The presumption is, of course, that your mental health impacts your ability to do your job. I didn’t have my first Episode until I was already established, and even then I had the typical fears. But because I had court dates, staff, and clients, I was forced to be very open about it.

So I was, with amazing reception. Until I bumped into one attorney who said to me in a mediation, “How does depression not affect your ability to do your job?” To which I answered, “I dunno. Lincoln was depressed, how’d he do?”

I read this amazing article in The Atlantic by Joshua Wolf Shenk (credit where credit is due) about Lincoln’s depression, and how, if he had had it today, it would be treated in his campaign as a character issue, and about how it made him a better President, and about how, the day after he got nominated to run, he was found in the convention arena with his elbows on his knees and his head in his hands by the then Lieutenant Governor of Illinois to whom he – wait for it – refused the stigma and simply said, “I’m not very well.”

When Mike Wallace (60 Minutes Correspondent – and, if you are under 35, just trust me) was working, I used to answer the question, “What are you afraid of?” with, “Two things – snakes and Mike Wallace.” Mike Wallace in his memoir was brazenly open about his battle with depression, his suicidal tendencies, etc. And, he was one of the greatest reporters to ever live.

Abraham Lincoln and Mike Wallace – you wouldn’t think they have a lot in common, but they do have this. They excelled at the peak of their profession, and they were reflexively open about their battles with mental illness.

From which I have learned this. Internal acceptance of your health, defying myth, and performing minimize mental illness to not even a side note on your resume. I have said more than a few times, “Yeah, I had a hard time getting into the shower this morning, but I am here now.” And I have found that it actually creates a kind of respect more often than not, rather than a prejudice. And you have to remember this, if you are a mediator in a room with two lawyers and two clients, one of the four of them knows EXACTLY what you are talking about. Same thing if you are checking out a married couple while your manager watches and the person bagging is within earshot. One of the four of them knows too.

Do not be afraid of yourself. Be afraid of not being yourself. Enough is enough with the myth that mental illness prevents you from excelling at what you do for a living. I can mediate with a sprained ankle, you can build a house or work from home part time with a head cold. And at the end of the day, there isn’t any significant difference.

In future blogs I will try to share some successful experiences with sharing mental health in the workplace, and some strategies that might be helpful for now. Foremost is this – you need to believe in yourself first. People will pick up on that, and move on. And your job / career won’t have to be one of the things that you have to carry with you while you heal.

From Abraham Lincoln in a letter from the White House on December 22, 1862 to a grieving daughter who had just lost her father:

“You can not now realize that you will ever feel better. Is not this so? And yet it is a mistake. You are sure to be happy again. To know this, which is certainly true, will make you some less miserable now. I have had experience enough to know what I say; and you need only to believe it, to feel better at once. The memory of your dear Father, instead of an agony, will yet be a sad sweet feeling in your heart, of a purer and holier sort than you have known before.”

Tell me that President who dealt with depression full time wasn’t at the top of his game.

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Good News: I’m Not a Serial Killer

I recently told a new friend and neighbor that I manage a diagnoses of Bipolar I with psychosis and rapid cycling. I explained that I haven’t been symptomatic in a long time and that vigilant compliance to my health care regime is key to thriving – as is support. I asked if she had questions and we talked a lot. It was a very open, honest conversation, Jesica was extraordinarily receptive and filled with empathy.

PeacefullI recently told a new friend and neighbor that I manage a diagnoses of Bipolar I with psychosis and rapid cycling. I explained that I haven’t been symptomatic in a long time and that vigilant compliance to my health care regime is key to thriving – as is support.

I asked if she had questions and we talked a lot. It was a very open, honest conversation, Jesica was extraordinarily receptive and filled with empathy. But it wasn’t until we sat down to discuss what this “coming out” process has been like for both of us until just the other day when I interviewed her for this piece.

From this conversation, I was able to better pinpoint a few stigma realities and an even better understanding of the true meaning of our friendship.

For example, when I asked Jesica what her perception had been of bipolar disorder before meeting me, she said she held the ideology that people with this diagnoses were irregularly moody and often violent, scary people who need to be shunned and avoided in society. But knowing me and having been my friend, she explained that spending time with a good person with a good heart and soul, she owed it to herself — and me — to learn more about my diagnoses.

This wasn’t shocking. This was a gift.

Many people truly have this ill perception and haven’t had a reason to be properly educated about the realities of the disorder.

So Jes did some research. She picked up immediately on the “I’m not my diagnoses” theme I sprinkle liberally throughout my writing. Between spilling my guts and our more formal interview, she read a number of my blogs and some information on line. She said people “think they know what the diagnoses means”, but she quickly learned to understand she was among the many who had a once skewed idea of bipolar reality. And getting that “I’m Kate, not Bipolar Kate”, she observed that it’s knowing me as a good, strong person that enables her to trust that even if symptomatic, “Kate” would be inside somewhere – steering a course and almost instinctively getting help and guess what? Leaning on my new friend for support. Jes said, “everyone needs support at some point or another”. I consider the support aspect of our relationships no differently, she explained, than a friend dealing with the trauma of divorce or the overwhelming need for comfort when loosing a friend or relative due to the myriad issues we all have in this hectic world.

As we concluded the more formal aspect of our conversation and got more chatty, I asked Jes if I could count her in as part of my support system in Virginia. Not having the wealth of community I had only a short while ago, knowing someone who not only trusts and believes in me but also supports my management of bipolar as well is exceptional. Knowing this kind, giving person could also hold the stigma that mental illness, specifically bipolar disorder, could trigger a rage of violence on the drop of a hat would have once made me feel victimized.

But you can’t help solve the problem – you can’t advocate — without understanding the stigma – and the very real and ugly underbellies to many mental health diagnoses. Understanding reality is so important. We can’t fight stigma and steer perception to a more realistic picture of the myriad psychological disorders if we’re never going to get beyond an image of violence or “sick” people who can never achieve good health. No – you can’t be “better”, but you can be healthy knowing you’re compliant and that your bevy of support members is strong.

And my new friend Jes answered with quickness and certainty that she wants to be an active member of my support system.

Moving many states from home can be scary. It’s also extraordinarily educational and rewarding, too. Accepting that stigma exists to a level I didn’t truly understand was an educational slap in the face. Knowing it can be overcome with a good dose of sharing is another stepping stone in the long and often tiresome path to change.

My new friend Jes is now a part of my new and evolving support system. I can’t help but feel blessed and for the better.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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Let Them Eat Cake

I’ve accepted a truth which challenges my sensibilities. It is empirical, and I’d be a fool to deny it. While it’s obvious that I am not my diagnosis - that’s metaphysically absurd - I live with schizophrenia, the result of a mutation in my DNA. I didn’t get schizophrenia. It’s not acquired. It exists before birth.

dark back streetEating out of the garbage can is never a good thing, but it didn’t register as an unhealthy choice. Scraps are scraps. If they’d have been paper, I could’ve made a collage; cloth, and I might have sewn a quilt. Instead, I get to embarrass myself. In perpetuity. Because I just told you that I ate from the trash.

That was nine years ago. I’d been homeless for four months. Those days are behind me now; I work hard to keep it that way. I have schizophrenia, and I do something each day to manage it. That’s probably not what you expected to read after seeing the words homeless, eating garbage, and schizophrenia in these opening paragraphs, but I’m an advocate for mental health. Honesty is my bedrock. Breaking clichés is my jam.

Still, there are times when the stereotype fits. My emotions are more synesthetic than instinctive. I walk without awareness of my body. I talk to myself, and I see things you don’t. None of that matters. I take care of myself. I pay the rent on time. I buy the groceries and take my meds. But when my symptoms are active, the mistakes I can make place me smack in the middle of a paradox I like to avoid: am I my illness or not?

I’ve accepted a truth which challenges my sensibilities. It is empirical, and I’d be a fool to deny it. While it’s obvious that I am not my diagnosis – that’s metaphysically absurd – I live with schizophrenia, the result of a mutation in my DNA. I didn’t get schizophrenia. It’s not acquired. It exists before birth.

A person doesn’t come down with schizophrenia. It’s not the flu. Yet confusion surrounds this concept of contagion, due in part to the romanticized incidences of temporary psychosis caused by the abuse of controlled substances. Pop culture’s obsession with instant consciousness expansion has lead to a false impression of what it’s actually like to live with an organically disordered mind. The belief that choice plays into the equation because a celebrity got high and “heard the colors of the music” denigrates every individual struggling to survive the adverse effects of a living in a neurominority.

Don’t get me wrong. I’ll be the first to acknowledge that addiction is a serious social and mental health concern. Numerous factors contribute to the experience of substance abuse and dependency, but for the one percent of the world’s population born with schizophrenia, we had no more choice in the matter than we did our eye color.

Society appears to ignore this dichotomy. In the eyes of the law, criminal activities associated with addiction are prejudicially equated with mental illness. People born with schizophrenia are routinely lumped together with addicts and alcoholics for the convenience of our policy makers. The dismissal of either group creates more conflict than it does resolution, inadvertently discouraging treatment while encouraging discrimination.

Adapting to a cultural stigma running counter to the creed of this country – a doctrine which promises that “all men are created equal” – means I am expected to exist outside those liberties, without those rights, and beyond the love of a Creator who fashioned me – same as they – but for the genetic anomaly which led to this life I have, the one where garbage is a gift and loneliness a privilege.

I have a disabled pass for the bus. When I take a seat in the designated section, the vets and grandparents scowl at me and tell me to go sit in the back. My illness isn’t any more apparent to them than it is to the representatives putting the squeeze on public assistance. So I take a beat, then share my story with respect. They listen and share. We unify because we have something in common.

I speak across age, race, gender, and disability, because the culture we share treats us disparagingly, eventually pitting us against one another if we let it. And for what? So we can live below the poverty levels established by the entitled few? So that those of us overwhelmed by the red tape of social health services, or too impoverished or stigmatized to buy and take our meds, can be considered less than human?

I think not.

The pen is still mightier than the sword, even when that sword is cutting public programs to ribbons. The tired, the poor, the huddled masses that the Statue of Liberty claims as her own: that’s us, “yearning to breathe free,” writing, reading, and talking nonstop about the injustice our clumsy buccaneer will never know. Eventually our stories will have turned the tide, and future generations won’t have to feel the sting of that blade. Because it will be thrown out. Tossed in the trash. Where no one has to dig for supper ever again.

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When Ignorance Isn't Bliss

My days will be spent searching for new resources, for that one person with lived experience whom truly understands what this feels like. I will access support forums, read books, and have even written this blog in the hope that someone will reach out to me and share their own experiences. I am clinging onto my sanity here by the skin of my teeth.

August 2015 photo Depersonalization-DisorderDepersonalization disorder is, by far, my most challenging disorder to live with, as I have previously explained in another post. This is partly due to the psychological symptoms – feeling detached and unreal, feeling numb, and feeling as if I am living my life in a cartoon or movie. I am a Simpson – there, I said it. However, there is also the lack of medical understanding behind the disorder. I swear half of the professionals that I have seen have had to turn to Google for answers, just as I did. The blank expression on their face when I speak says it all. They don’t have a clue.

“We’ll try you on antipsychotics, they should help”

“How will they help though? I’m not psychotic”

“Depersonalization is so under-researched and misunderstood, but we have every faith in these”

It is because of this limited understanding that it has taken four years for me to be formally diagnosed with the condition, despite my desperate pleas. In the beginning, when my mind sent me into this ‘alternate world’, all I had wanted was for one medical professional to have the answers, to be able to pinpoint exactly why this is happening to me. And they couldn’t/wouldn’t.

They were like a record on stuck, reciting the two phrases “Oh it’s just anxiety” (just anxiety? really?) or “it’s childhood trauma”, repeatedly. I am now twenty five years old, how is it even possible for my mind to still be in protective mode over the death of my mum at ten? I knew that something wasn’t right, but, before seeing my current psychiatrist, not one therapist chose to listen to or believe me. Do you have any idea how frustrating that is? One therapist even went as far as to say that because I can keep eye contact I can’t be depersonalized. My instant thought at that moment was to grand slam her head on the table, but I refrained from doing so and cut the session short.

Do they even know how challenging this is? How terrified I am? Each night I dread going to bed because I know that, before long, I will be going in to a new day like this. I will spare a little prayer numerous times a day in the hope that it will take this all away, but it never happens. I am told that I need to ‘accept it’, but how do I do that? How do I learn to accept a condition that is severely impacting my everyday life? A condition that is preventing me from forming relationships, socializing, and gaining employment. A condition that never lets up.

Oh, and trying to explain depersonalization to a non- sufferer is about as possible as teaching a dog to recite the alphabet.

“I don’t feel real”

“Everything is in 2D”

“What do you mean?”

Cue the awkward head tilt.

I can understand their confusion though, to an extent, although I am slowly losing patience. It feels as if I am being silenced with medication. I have had four years of therapy, and still I am no further along in my recovery. My days will be spent searching for new resources, for that one person with lived experience whom truly understands what this feels like. I will access support forums, read books, and have even written this blog in the hope that someone will reach out to me and share their own experiences. I am clinging onto my sanity here by the skin of my teeth.

While I am fully aware of how difficult it is to be honest about depersonalization, fearing that you’re losing your mind and will be sectioned indefinitely, you don’t have to suffer in silence. As with any mental illness, find someone you trust. This is too heavy a burden to be carried alone, and I speak from experience. I am lucky in the sense that my brother remains an amazing source of strength and support throughout this. He has joined numerous Facebook groups and will talk to members in the hope of gaining a first hand account and a better understanding. He will wipe away my tears, FaceTime me from work as a ‘grounding’ technique, and buy me flowers when I am feeling low. Thank you, Matthew. Thank you for believing me.

 

 

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Turning 62

But there’s something I’m not telling you. Something that relates directly to having a mental illness. It’s the weight I’ve gained from taking medication that is causing these aches and pains. It’s the hunger that comes with some medications and the lack of direction on how to avoid that weight gain. Now I’m on the warpath about weight gain and how unnecessary it is for those of us who take medication and who are experiencing these bad side-effects.

62 seems so much older than 61. I wonder why? Perhaps it’s because I’ve been in my 60’s now for 3 years? It still sounds strange, to say my age, and I’m not getting used to it. I do have three grown children, a daughter-in-law as well as a son-in-law, and I’m a grandma too; that at least should let me know where I stand in this life! But sometimes I can’t remember how old I am and have to think about it for a second. Does that happen to everyone who makes it across the threshold of 60? I hate these sayings: 60 is the new 50 or 70 is the new 60. How ridiculous! I didn’t feel this way when I was 52. I am beginning to have the aches and pains that come with age. My feet hurt, my back hurts, my neck hurts. Of course they do! I’m 62 for goodness sakes!

But there’s something I’m not telling you. Something that relates directly to having a mental illness. It’s the weight I’ve gained from taking medication that is causing these aches and pains. It’s the hunger that comes with some medications and the lack of direction on how to avoid that weight gain.

Now I’m on the warpath about weight gain and how unnecessary it is for those of us who take medication and who are experiencing these bad side-effects.

There is a young man, Jason DeShaw, who lives with bipolar disorder. He is passionate about fighting the stigma of mental illness and, as a musician, has traveled throughout his home state of Montana (the state with the highest rate of suicide) with a compelling show. He is skinny and it’s because he runs four miles a day. How did he know? Perhaps his doctor warned him about weight gain? I don’t know; next time I see him I’ll ask. The point is, our doctors need to step up to the plate. If, when we first went on medication, we didn’t begin a rigorous exercise program, we are now struggling with the effects of gaining weight.

Over the last eleven years, from when I was first diagnosed until now, I have slowly gained so much weight that I’m now having to use drastic measures, akin to torture, to lose the weight I gained. My risk for diabetes is huge; I am only one point away from it. I am on an 800 calorie per day diet to try to stay ahead of diabetes. My feet hurt, my joints hurt.

But more than anything, I feel ugly. It’s been a joy to lose 20 pounds so far and begin to see my face the way I know it! I will stick with not eating much until this weight is gone. I don’t need to hide behind my weight anymore. Perhaps this is the best part of turned 62; I feel secure enough in myself now to begin this radical change for myself.

I just wish I had known that if I didn’t take care of myself I would be grossly overweight. I wish my doctor had not only warned me but gave me a way to eat and exercise to keep this from happening. My friends who take psychiatric medication have also decided to try to get off their weight. Wouldn’t this be easier if we began warding off weight gain in the beginning?

I think so!

 

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A Daughter's Joyful Smile

Here is a question: are those who struggle with mental health disorders (or who have struggled with them) outsiders? A majority of the world may say that they are because stigma is so prevalent around the topic. I looked at my daughter last night though and told her we are the most amazing outsiders there are, the survivors and the fighters of mental health disorders. We can lend a voice to the world and vast perspectives. Together we can open doors and we will!!

Transparancy photoPicture this. You are in your house performing your daily routine, in this case for me it was prepping to write a final exam, when your child’s school calls. It is the guidance counselor and she wants you to know that your child just verbalized having a suicide plan. What do you do? I would like to tell you what I did. I stumbled on my words. I felt my heart sink. My spirit felt guilty for not knowing just how bad the bullying at my daughter’s school had gotten. I went and picked up my daughter. Our journey began that day and it was not a path I ever wanted to see my daughter go down. Really, do any of us want to see our children struggle with a mental health issue. In my daughter’s case her depression was brought on by anxiety from the terrible bullying that was taking place at her school. Today I am dedicating this post not only to my daughter, but to a band her and I both love called Fall Out Boy. The reason for this dedication will be understood as you continue to read.

I am a mom who has a child diagnosed with anxiety disorder, which has led to periods of depression. All of this was induced by bullying that she went through at her middle school. You see my daughter is what some may call an “inbetweener”. She is not a popular kid, a sportsy kid, or super intellect. In school she gets good grades and travels along each day. Some may call her the artsy kid. She loves drawing, anime, comics, and listening to Japanese music. We knew that she had been struggling at school due to bullying. The incidents were being reported by her and us to the staff and we assumed things were improving. Why did we assume? I am a survivor myself of major depression and PTSD from my teenage years.   There is a part of me still that feels I should have known when she was silent that she was not telling us everything and things were not improving. I was once that silent teen that was struggling inside and when I was silent that is when things were at the worst point for me.

I wish I could perform a Vulcan mind meld, sorry I am a Star Trek fan, on people to help them understand what I felt that day and the months that have followed. It was a few weeks before Christmas last year when this journey began for us. I did not want my daughter to go through the struggles I did for so many years with depression. Yes, I understand I survived the grasp it had on me. However, the years of darkness and stigma that surrounded me I did not want for my daughter. I felt extreme guilt. Did she get my genetic gift of being vulnerable to something like depression? Why did I not see how bad she was really feeling? I am a registered nurse and someone who has been in shoes similar to my daughters. Maybe I should have known. For months I have watched as my daughter’s spirit was battered by anxiety and depression. I saw her smile disappear and her voice get taken away. Every month I have attended therapy sessions with her or taken her to her psychiatrist in hopes of finding just the right medication and words to keep her moving forward. My spirit has also been full of anger, which is an emotion I am not proud of. Why did I have to fight so hard to have my daughter’s voice heard at her school? Why was there no discipline being passed on to those who hurt her? Do these bully’s parents even know what their children are doing?   Do they care?

I hurt for my daughter. I wanted to be able to hug her and have everything magically disappear. However, I knew rationally there is no such magic.   So I made it a point to be very honest with her and talk every day. I fought for her to help her have a voice at her school. Slowly, things began changing.

That day many months ago when the school called I wondered when I might see my daughter’s pure smile of joy again. Well, last night thanks to a group of four talented men called Fall Out Boy I was able to see it. It was bright and beautiful, which led to me crying happy tears. Transparency is so important. It is one reason I write for Bring Change 2 Mind. We listened last night as Pete Wentz told the crowd that outsiders are important. Here is a question: are those who struggle with mental health disorders (or who have struggled with them) outsiders? A majority of the world may say that they are because stigma is so prevalent around the topic. I looked at my daughter last night though and told her we are the most amazing outsiders there are, the survivors and the fighters of mental health disorders. We can lend a voice to the world and vast perspectives. Together we can open doors and we will!!

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What I Know Now that I Wish I’d Known Then

We are dealing with (in most cases) a chronic illness that will have periods of remission and periods of relapse. Mental illness is complex, our children are growing and developing, changing at a very rapid pace. So treatments that worked at one point may not at another. And, treatments that were unsuccessful at one age may be very successful a year or two later. Over and over we were told ‘this is a marathon, not a sprint’ so pace yourself. We are told on airplanes to put on our own oxygen masks before helping our child. The same holds true here – if we are run down, depleted, and spent, we cannot adequately help our child. Self-care is not indulgent, it’s a matter of survival.

Recently I was asked to write an introductory letter to parents whose child had recently been diagnosed or who was going into treatment for the first time. Sort of a ‘what I know now that I wish I’d known then’ article. I thought it might be helpful to use that as a foundation for this month’s blog. My hope has always been that some of what our family experienced can be used to help other families so that their journey might not be so long and difficult.

When my daughter was first diagnosed with bipolar disorder at age 9, I felt a wave of different emotions. First there was relief – after years of troubling behaviors we finally had a diagnosis, our concerns were validated and it wasn’t about being an inadequate parent. Then came fear – what did this mean for my child? What would her future be like? I imagined her isolated, shunned by her peers, unable to function. With fear came sadness – I mourned the loss of what I had dreamed of for my daughter. My heart broke for the suffering she had already endured and what was to come.

I’d be lying if I left out anger – this emotion has come back more times than I’d like to admit, particularly when stability seems so far out of our reach. Why my child? Why our family? What did we do to deserve this? I try to remember that just about everyone has something, at some point, which they have to face and fight. I focus on the many, many silver linings that we’ve encountered along the way. The joy of appreciating rather than taking for granted the most simple of successes or just a peaceful day. I get to experience a level of happiness and gratitude with amazing frequency that others may rarely encounter. Yes, I also get to experience some incredibly painful emotions but those have taught me patience, perspective, resilience, and hope. And I have made lifelong friendships with some wonderful, compassionate, and insightful people who I never would have met were it not for our shared journey.

Looking back over the past 14 years, here are the things that helped me along the way. If you are just starting on the path towards wellness for your child you may feel overwhelmed. Please know that you are not alone nor do you need to be alone.

1. Learn all that you can.

Knowledge is power. Fear is often rooted in what we don’t understand or don’t know. By learning about our child’s illness we can dispel myths, learn about symptoms, treatment options, resources, and strategies. We can replace fear with hope. Often our role is going to be as an advocate for our child because they cannot do so themselves. Document everything you can – medication changes, sleep cycles, mood swings, meltdowns, diet, school attendance or avoidance . . . This valuable information shows trends and important information that, when shared with your child’s treatment team, will help them to get a full picture of the illness. That in turn will lead to more accurate diagnosis and treatment.

2. Get second and third opinions.

Mental illness research is still in its infancy compared to other major illnesses such as cancer or diabetes. The good news is that every year brings new discoveries, particularly in the area of child and adolescent mental illness. The bad news is that not every clinician is up to speed on the latest research in every area. This is true across the board, not just for mental illness, and isn’t necessarily a negative reflection on the clinician. But if you’re not comfortable with one clinician’s diagnosis, approach, or treatment recommendation then get a second opinion. It’s like putting together the pieces of a puzzle. Gradually certain pieces will bubble to the top and fall into place.

3. Take care of yourself.

We are dealing with (in most cases) a chronic illness that will have periods of remission and periods of relapse. Mental illness is complex, our children are growing and developing, changing at a very rapid pace. So treatments that worked at one point may not at another. And, treatments that were unsuccessful at one age may be very successful a year or two later. Over and over we were told ‘this is a marathon, not a sprint’ so pace yourself. We are told on airplanes to put on our own oxygen masks before helping our child. The same holds true here – if we are run down, depleted, and spent, we cannot adequately help our child. Self-care is not indulgent, it’s a matter of survival.

4. Take care of your relationships.

Just as our children save their worst behavior for us, we too may let off our frustrations, stress, and emotions on the ones closest to us. We do this because we know that the people closest to us love us, keep us safe, and will stick by us no matter what. Our child’s illness and development stages limit their ability to understand the impact of their behaviors or they may lack the skills or words to describe what they are feeling. While our children may only be able to react, we as adults have the ability to respond. It’s not always easy, but recognizing the difference between these two words can go a long way towards protecting our relationships.

Just as our children save their worst behavior for us, we too may let off our frustrations, stress and emotions on the ones closest to us. We do this because we know that the people closest to us love us, keep us safe, and will stick by us no matter what. Our child’s illness and development stages limit their ability to understand the impact of their behaviors or they may lack the skills or words to describe what they are feeling. While our children may only be able to react, we as adults have the ability to respond. It’s not always easy, but recognizing the difference between these two words can go a long way towards protecting our relationships.

Reacting is instinctive, impulsive, and emotion based. It’s that ‘zero to 60 mph’ in a Nano second explosion that we see from our child, often with little or no warning. It’s been described as an emotional seizure, once it’s underway we just have to let it run its course and try to minimize the damage.

Responding is all about putting on the brakes when our emotions start to kick into high gear. It involves thinking through the impact of our emotional response and considering other options. 9 times out of 10, I’ve found that slowing myself down and responding instead of reacting gets us to a positive outcome and helps to neutralize a potentially volatile situation.

5. Build a support network and treatment team.

The first time my daughter was hospitalized, I told no one. Every negative, stigmatizing, stereotypical scenario came to mind and I thought that she / we would be judged at worst or misunderstood at best. Unlike most other medical crises where friends would come running with casseroles and car pool rides, our family struggled in silence. By the third or fourth hospitalization, I had completely changed my approach and (thankfully) had become much more open about the realities of this chronic illness. My worst fears weren’t realized, my friends and neighbors rallied and their help was invaluable.

Everyone has their own comfort level in terms of disclosure and you know best what is right for you. However, anything you can do to bring even a few trusted people into your inner circle will go a long way in supporting you through the tough times. Remember, most people want to be helpful and if we don’t let them in, we’re denying them the opportunity, the joy, and satisfaction that comes from doing a good deed for a friend.

6. Everything is a phase.

So many times I wished that I had a crystal ball with a window to the future. The hardest part was not knowing just how long a phase would last or when a medication might finally start to work. With each passing day the anxiety of being stuck grew larger. In hindsight, however, I can say with a great deal of certainty that things will change, and, more often than not, things will get better. The best I could do was repeat to myself ‘this is a phase, this too shall pass’ and ‘it’s not my child, it’s the illness’. I had to look at each day as a new day, a fresh start. When I perseverated about the past I missed out on the signs of hope or the opportunities for progress.

Today I can honestly say that there is hope. Things do get better. Even a few years ago I would not have dared to dream of the success that my children are achieving. Whether it’s in spite of or because of their illnesses, what matters is that their illness hasn’t defined them. I wish the same for you and your family.

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Memories

My memories are usually quite vivid. I tend to be able to “see” them as a photograph, a sound, or a video. Having such a memory is wonderful for those moments that are special or important. But it can be unsettling, when I remember the “unpleasantries” of my life.

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Do memories linger in the mind or in the heart?

The first memory that I associate with my depression is from the night my father suffered a heart attack.

My parents were out to a dance, which they attended often. They returned home around 1 am.  My mother called me about a half hour later, saying that Dad wasn’t well and that she had called an ambulance. I met them at the City Hospital. I was there when the ambulance arrived. Dad was quickly rushed into the ER, Mom and I followed. He was taken behind curtains while doctors saw to him. Then I recognized the monitor’s sound. He had flat lined. I will always remember that sound, as Mom and I held each other. Dad would survive that night but pass 6 months later. He was 59, I was 31.

My memories are usually quite vivid. I tend to be able to “see” them as a photograph, a sound, or a video. Having such a memory is wonderful for those moments that are special or important. But it can be unsettling, when I remember the “unpleasantries” of my life.

I  have fond and happy memories of my childhood, and teenage years. My father and I flying to Montreal to see the Montreal Expos play baseball. Back in the Rusty Staub days. Family vacations. Our yearly trek to the Nova Scotia Provincial Agricultural and Horse Exhibition, which denoted the end of summer. But, of course, I had teen-aged angst. I was a nerd back when it wasn’t so cool!

The worst memories that occurred to me following my father’s death surprised me.

My family and I always were “prepared”, as well as we could be, for the special days, such as his birthday ( which was also my parents’ anniversary date ), or Christmas, which he loved. I knew those days would come and I did all I could to handle them.

But the surprising memories occurred completely unexpectedly. I would be in court, delivering closing arguments at the end of a trial, when I would think of my father. His “appearance” would floor me, pure emotion about to surface. I would pause, take a drink of water, try to collect myself and continue.

Other times, I would be driving, and have a memory of my father. I would have to stop, and get off the road, and try to regain some composure. These out of the blue memories, without warning or notice would simply overwhelm me. Emotions were raw.

Back then, unlike now, I wasn’t one to share much emotion. I would take a deep breath, or several, and continue with my work, which was my focus. I found that I could control my practice with my colleagues and clients. My personal life was lacking, and then non-existent. My depression was settling deeply into my mind.

For years, while recovering, my life was good, even wonderful, if only for brief moments. My memories from that period involve my family and times of achievement by me. Leaving the house to go for groceries was recognized as a huge step by me. I can “see” myself going to a local restaurant, which I simply was unable to enter. The depression and anxiety too great to overcome, at that time. I would sit in my vehicle in the back parking lot, waiting for the food. Six months later, I entered, ordered lunch, and ate!

My mother was correct. During the dark days of depression, she always told me to have hope and that my life would get better. I didn’t believe in myself, but I believed in her.

Recently I see “bright, soft, and even dark colours” in my life. I rather like it. With it, comes new memories

Enter my “special one”. She chuckled when she read my last blog and seen that I had called her such.

My memories of the last 5 months are vivid, beautiful, and awe inspiring. I have “photos” of her in my mind. I could write a series of blogs on those memories.

One was on a road trip during the winter. I came into the hotel room. She was standing at the window, gazing out into the snow storm. I stood and watched her, appreciating every breath she took. A “ Beautiful Vision” as per the Sir Van Morrison song. That “photo” is forever.

Another…our leaving a movie, and again a snow storm. We walked, looking for any restaurant that was still open. We laughed as the snow swirled around us. Both simply enjoying the moment.

When my journey is concluding, hopefully years from now, all I will have will be memories

My memories linger in my mind and my heart.

 

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Memories of Psychosis

I share these symptomatic stories in an effort to better define for you the meaning of bipolar psychosis. But for me, these memories are like a string around my finger, helping me remember why it’s so important to stay healthy. Knowing I’ve survived this experience humbly makes me proud. For 18 years I’ve held these memories close, because returning to planet mania is not an option.

Don't Forget --- Image by © Royalty-Free/Corbis

Bipolar I psychosis is regularly defined as “a severe episode of either mania or depression (but not hypomania) that results in a detachment from reality and includes symptoms of false but strongly held beliefs (delusions) and hearing or seeing things that aren’t there (hallucinations)”.

That’s great. But what do these symptoms look and feel like? Everyone’s experience is different, but in an effort to showcase the realities of my mental health diagnoses, I’m sharing just a few examples of what my mind’s eye has seen . . .

Kate’s Top Five (PG) Memories of Psychosis

1. One afternoon, the devil impregnated me via my belly button ring so, from my perspective, the only way to abort this horrible image from my altered mind was to remove the ring and hope for the best. Of course, like the other rapid blasting images, this concern passed quickly.

2. One bright and breezy summer afternoon, something . . . someone . . . told my manic mind that I was a vampire and should never leave the house during the day. When I did leave, I felt my mind melt and my body ready to dismantle. I ran home in lightning speed to safe darkness.

3. One hot summer day, I sat on the back stoop with the family dog, Sam. I looked down at my ghost-like pale leg and saw a small lump under my skin, moving ever so slowly from my ankle up my main leg arteries. Upon careful inspection, I realized it was a spider, headed directly to my heart. I figured, soon, I’d be dead.

4. One corner bar near my home in Brooklyn was always fun. So, why shouldn’t I arrive “Carrie-style” with my hair soaking wet and plastered to my face? To make matters worse, I brought my own snacks – cereal in one hand, gallon of milk in the other. When the bartender arrived, I requested a bowl. It was suggested that I leave.

5. Once I was convinced that I was being ruled by aliens as they were planning to annihilate the human race. My role as Jesus Christ made me the perfect target in their evil plot.

This list could go on for days – thinking back now to the time I dismounted my Goddess statue from the center of my apartment’s backyard garden. I dragged the rather large piece to the front sidewalk where I smashed it to bits with a sledge hammer. I have no idea why. This is what I remember.

My diagnosis is Bipolar I with rapid cycling and psychosis. My strong, love-filled life keeps me going. The ugly memories of my major episode in 1997 re-enforce my stead-fast commitment to compliancy. Without meeting tailored recommendations for behavioral change and a well-developed medication regime, this life that is happy and normal for me could crumble – a lapse back to a horrid and seemingly never-ending episode of manic psychosis.

I share these symptomatic stories in an effort to better define for you the meaning of bipolar psychosis. But for me, these memories are like a string around my finger, helping me remember why it’s so important to stay healthy. Knowing I’ve survived this experience humbly makes me proud. For 18 years, I’ve held these memories close because returning to planet mania is not an option.

The images dancing in my head have and will continue to help me be aware, healthy and honest. The worry has been replaced with confidence and an ability to thrive. So yes, thank you, mind – remembering psychosis helps.

 

 

 

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"LISTEN CAREFULLY" Written by Iysha Rafiq, and Performed by Actors from the Movie, LISTEN

We are in a crisis. At the root of the chaos going on in the world, is the fact that we don’t know how to listen to one another. If we start actively listening, then the tragedies will subside. We can literally save lives just by listening. Please share. #Itonlytakesamoment to listen.

“LISTEN” is a poem written by fifteen year old Iysha Rafiq that was inspired by her experience as an extra on the feature film LISTEN. We felt compelled to bring her words to life so we asked actors from the movie to recite the lyrics.

We are in a crisis. At the root of the chaos going on in the world, is the fact that we don’t know how to listen to one another. If we start actively listening, then the tragedies will subside.

We can literally save lives just by listening. Please share.  to listen.

Knox Avenue Films
Editor:  Erahm Christopher
Producer:  Brooke Dooley
Composer:  Allan Vest
Sound Mixer:  Rocketwerks
Colorist:  Mars

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Guide & Support Me (without judgement)

With regards to living with anxiety (agoraphobia) and depersonalization/de-realization, every day is an often silent battle, as is the case with the majority of us. I realize that, logically, a five minute walk to the corner shop may not seem as challenging as getting on a bus and travelling into my local village, but please know that, in my eyes, I have just conquered Everest.

July 2015 Words-Do-HurtIt has been a long five year battle with mental illness, and sadly it is far from over. While I have been blessed enough to have a wall of support around me – from my amazing brother to my psychiatrist – I have also had to endure my fair share of stigma, as many of us have. I have decided to use this blog as a vent, a means of voicing my level of disgust and bewilderment at how society appears to have built up the ideal that we must conform to in order to be ‘mentally ill’.

“Everyone experiences anxiety – Yes, that is true, we do all experience anxiety. From the students preparing to sit their exams, to expectant parents waiting on the arrival of their little bundle of joy. Anxiety is a normal and even healthy (to an extent) part of everyday life. The difference here though is that severe anxiety can develop into a disorder, preventing you from leading a fulfilling life. It can lead you to avoid socializing, force you to leave education and/or employment, and even make you fear people and leaving the safety of your home. Yes, mental health research is aplenty, but I still think that there is often limited personal understanding when it comes to the true impact of anxiety. If only it were as simple as having butterflies in your belly, as many will believe.

“You’re allowing this to happen – Believe it or not my therapist has actually said this to me a fair few times. Yes, really. Does she really think that I am happy like this? Does she genuinely believe that this is how I had wanted my life to pan out? If I could step out of this screen of depersonalization, banish my fears surrounding, well, everything, and stop having panic attacks on a daily basis then, believe me, I would give anything, but I can’t. I already feel powerless, but hearing this makes me feel worthless.

“You just need to push yourself – Let’s just get one thing straight right now, sufferers of mental illness are some of the most strongest and resilient people you will ever meet. The issue here though is that they will rarely receive the level of praise they so rightly deserve for their courage because it is an invisible illness – a silent battle. You will therefore never understand what it takes for us to get up in the morning, to shower, get ready, and face another day. You will never witness our tears when the black dog is biting away at our ankles, when the voices are screaming too loudly, or the anxiety has led to yet another overpowering panic attack.

With regards to living with anxiety (agoraphobia) and depersonalization/de-realization, every day is an often silent battle, as is the case with the majority of us. I realize that, logically, a five minute walk to the corner shop may not seem as challenging as getting on a bus and travelling into my local village, but please know that, in my eyes, I have just conquered Everest. I have had to battle numerous debilitating panic attacks, challenge intrusive thoughts and work through debilitating depersonalization to make it there – can that not be enough?

“But you are so well dressed and well spoken I have lost count of the amount of times I have heard this. Now, do please tell me why this should make an ounce of difference. Are sufferers of mental illness not allowed to take any pride in their appearance? Must we cease showering, washing our clothes and brushing our teeth in order to be taken seriously? Personal appearance is a contributing factor to my social anxiety and agoraphobia. There will be a much greater chance of my being successful in leaving the house if I feel comfortable in what I am wearing and how I am looking, which involves doing all of the above. Believe me when I say that I have been victim to looks of doubt by mental health professionals when I try to define my suicidal urges and depressive episodes. When the scores were tallied from a questionnaire I had to complete recently, surrounding how I had been feeling during the two weeks prior, it was discovered that I was amidst a serious depressive episode and my honesty in completing the sheet was even questioned by my support worker because I had been ‘smiling’.

So yes, mental illness may be invisible, but please, please, never underestimate the internal pain and anguish we are going through. It is a constant battle you would only truly understand if you had to walk a mile in our shoes. Guide us, support us, and love us.

 

 

 

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Double Speak

Yes, I like TV. I know that liking TV isn’t politically correct but I don’t care. What I don’t like are advertisements. Some are cute, some are tempting but the ones that upset me the most are pharmaceutical advertisements. Why?

Yes, I like TV. I know that liking TV isn’t politically correct but I don’t care. What I don’t like are advertisements. Some are cute, some are tempting but the ones that upset me the most are pharmaceutical advertisements. Why? Because of double speak. The side effects of drugs coupled with the happy video of the drug takers do not go together. That is what I call double speak. I can’t believe how duplicitous this is! I suspect the visual is more powerful than the audio because we can be certain that these drugs are selling no matter what the announcer says.

My diagnosis of bipolar 1 brought medications with it. I know the meds I take are taking their toll and I don’t read the long list of side-effects that comes with each medication but I wouldn’t be alive without them. There were a couple of medications during the early years of my treatment that did make me very sick; one actually put me in the hospital. My doctor got me off those meds quickly. That experience was incredibly discouraging because before the meds made me sick they had made me feel more well, more normal, than I had felt in my entire life! In this blog I’m writing about drugs/medications that are not necessary, that will not save your life. I’m talking about “designer drugs” that are on the market to encourage people to buy them instead of doing the hard work of eating right and exercising, among other things.

I’ve been on TV a few times and without fail the hair people and the make-up people swoop in to make you look like they think you should look. I’m not used to wearing make-up very often so after the make-up person finishes with me I don’t look like the Jessie person I know. And then my hair!! The hair person makes my hair different than how I would EVER wear it! I don’t complain because these make-up and hair people are so incredibly nice and they’re only doing their job, but, I sit in the chair in front of the big mirrors and think: “OMG!! I have morphed into TV Land! My friends will think I look ridiculous!!”

Well, that never happened; I never had a friend tell me I looked ridiculous when on TV but, this again, is the TV double-speak. Being on TV is considered a big deal, a privilege, when in fact, commercial TV fills the air with current news and programming to satisfy the advertisers. A friend told me that she knew it was me but it was obvious that hair and make-up had been at me! Again, it’s the double speak.

Double speak teaches us to pretend and we pretend a lot in the USA. How else would it be possible to sell unnecessary drugs that have such terrible side-effects? How else would it be possible to worship celebrities who are simply human? How else is it possible to purchase violent video games for our children? How else is it possible to send our youth off to war? And how else is it possible to pretend that our mentally ill, our homeless and our disenfranchised veterans are merely crazy?!

I will continue to watch TV. I will continue to be aware and hope that we all learn to hear the double speak spoken in our complicated society.

 

 

 

 

 

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Naked

As a person living with schizophrenia, I am thoroughly convinced that going public with my diagnosis was the right idea. I stand behind my ideals because it is not fair for our culture to make us the target of ridicule and shame. Being authentic is the only thing that matters. We were born this way, mutant and proud. As the day we were born. Each and every one of us.

 

Naked photo June 25, 2015 hands

 

 

 

 

 

 

 

 

 

 

 

 

In my blog posted April 10, 2014, describing the genetic anomaly resulting in schizophrenia, I summarized my viewpoint on advocacy with the following words: “Is it fair for our culture to make me the target of ridicule and fear because of one maverick chromosome? No. It is not. It is unjustifiable. I was born this way, mutant and proud. Being my authentic self is the only thing that matters.”

The point that mental illness is a natural occurrence in human life seemed to resonate with readers, and yet I found myself stuck in an existential dilemma. As a person living with schizophrenia, I wondered if going public with my diagnosis was such a great idea after all.

I initially believed that the goodness in people’s hearts would win out, and – after comprehending the odds I was up against – they would accept and support me as a person willing to make a better life for himself, despite his debilitating mental illness.

My father once called me guileless, and perhaps this unwavering faith in humanity was the best example of that innocent trust. Vulnerability at its most fragile. In a word, naked. As the day we were born. Unspoiled, free, and pure. So what sullies this Universal state? The answer is simple: the twin pillars of Ignorance and Intolerance upon which the selfish build their platform of contempt.

I assumed that by being transparent I would be instantly welcomed into a more educated and supportive environment, but that was naïve. Safer to abide by the established norms of a culture predisposed to write me off as crazy. But that self-loathing got me nowhere. I woke up every morning hating myself for having schizophrenia. Stigmatizing myself polarized me against myself. How could anyone penetrate that defense? I found a solution when I shared my story with BringChange2Mind.

I discovered that I could contribute to something greater than myself. I could give a meaningful purpose to my life rather than letting schizophrenia destroy it. I could share my experience and offer hope to others, to people who, like me, had previously felt none. And if I could make a friend, then they could too. I made my choice to become an advocate.

I get to reach out to people around the globe. I have positive exchanges online and in real life, discussions about the various ways we manage our mental illnesses, and about reaching out to others. Change, however subtle, seeps into our lives. You can’t toss a pebble into a pond without making ripples. Those big, concentric circles start with one tiny, selfless action.

Like many of you, I have a personal interest in seeing the end of the derision and dismissal of our community. The complications of dealing with a mental illness are often overwhelming, not only for those with certified diagnoses, but for the many undiagnosed as well. Stigma and discrimination aren’t just media buzzwords. This is a very real, and very tangible, civil rights issue. When someone battling a mental illness cries “I need help,” the task our community is faced with is how best to rally a force powerful enough to turn a conscious tide.

When the topic of mental health pops up in your social circle, resist the temptation to be snarky. It doesn’t make you interesting – it shows the world how ignorant and selfish you’re capable of being. Sure, it might come from a place of frustration with your own diagnosis, but does lashing out at another mentally ill person make the world a better place for you both? No, it does not. It only reinforces the stigma we all fight against, rather than creating the acceptance we deserve. It feeds the misconceptions that we’re not worthwhile human beings. Next time, take a moment to consider the feelings of your mentally ill contemporaries. Is your path any more or less difficult than theirs? Does the culture stigmatize some mental illnesses more than others? You know the answers; we all know the answers.

Do the right thing. Look into your heart before you speak. Resist joining the culture of blame and ridicule. Support your brothers and sisters in their struggle against stigma and discrimination. Avoid adding to the negative conversation by throwing shade so that Ignorance and Intolerance weigh less heavy on your shoulders. Be your own pillar of strength. Help your family and friends understand you better by sharing the naked truth. Not with anger, but with pride.

Your genetic mapping can’t be changed, but it can be managed. Talk openly with your doctor, your therapist, your psychiatrist. Tell them exactly how you feel. It’s their job to listen. If they don’t, you’re not obligated to stay with them. Talk to your service provider. Have your family or your counselor help you find a better match, one more suited to your needs. You have these tools. Use them. You owe it to yourself. Your community – the one you build around you – will be there for you when the time comes. Be strong. Be brave. Be yourself.

As a person living with schizophrenia, I am thoroughly convinced that going public with my diagnosis was the right idea. I stand behind my ideals because it is not fair for our culture to make us the target of ridicule and shame. Being authentic is the only thing that matters. We were born this way, mutant and proud. As the day we were born. Each and every one of us.

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Opening The Lid

People assumed that since I worked in medicine I had an abundance of support, but to be honest I believe I felt more pressure to keep my dark friend hidden. There is even a stigma that exists in the medical field because mental health disorders still come with a lack of understanding and fear. They are not necessarily something you can see with an ultrasound or view under a microscope, so it is that unknown that causes misunderstanding.

Opening the Lid imageI remember as a child I was a mix of tomboy and girly girl. One of my favorite things to do was to catch the big fat bumblebees in a Mason jar. I would poke holes in the top of the lid prior to catching them, so they had just enough oxygen to survive their short visit. They were so fuzzy and fat that I would giggle watching them fly around outside, but at the same time I was afraid of them. When I would catch one I would watch as they flew around the jar trying to find a way out. They would slam into the side of the glass and whirl around. Finally, after a couple minutes they would settle into the jar. Perhaps they were exhausted or maybe they realized there was simply no way out. I would study their big eyes and often wonder if they had thoughts, the true curiosity of a child. This research would go on for about 30 minutes and then I was ready to release them. However, I had this fear of being stung by a bee so I would often beg my mother to help me out. She would chuckle and ask me why I continued to catch the bees if I was so afraid of them. Off the lid would come and the bee would rush out as if the open space and vast flowers were its one true happiness.

When people ask me what it was like to live in the arms of depression and post-traumatic stress disorder I often think about those bumblebees. Living with depression was like a bee being stuck in a Mason jar. There were a few holes that gave me the ability to breath from time to time when my emotions were not suffocating me. When I went through the experience that brought my diagnosis with it I felt like the bee trapped in the jar at first. I tried to find a way out and did not want the stigma that came with the diagnosis. Finally, I could not fight anymore. The disease became debilitating at times. Vivid dreams constantly reminding me of what happened. I would wake-up afraid and covered in sweat. The depression made me feel trapped. It would hold me in its warm embrace making me think it was my friend. Getting out of bed was a challenge and concentrating on schoolwork was almost impossible. So I settled into my jar defeated and tired. The doctors would prescribe me medicine, but it took a lot of trial and error before I found one that worked. Even then, the one that worked was prescribed to me at the highest dose possible and I would often walk around feeling numb. Therapists would ask me to talk about my emotions and during those conversations there were times I felt someone had given me more holes to breath through. Yet I could not help but feel like the bee in that jar. Everyone watching and analyzing me, but very few people willing to help me take the lid off. That was the stigma that existed around me.

People assumed that since I worked in medicine I had an abundance of support, but to be honest I believe I felt more pressure to keep my dark friend hidden. There is even a stigma that exists in the medical field because mental health disorders still come with a lack of understanding and fear. They are not necessarily something you can see with an ultrasound or view under a microscope, so it is that unknown that causes misunderstanding. I did not want people feeling I could not take good care of others when I was barely able to care for myself because truthfully it was caring for others that helped get me out of my jar. It helped me feel a little less alone in this big world because I would hear others stories. In the long run it was my journey with depression and PTSD that allowed me to take better care of my patients and empathize with them. When you work in the medical field you come to understand just how prevalent mental health disorders are and how many people are struggling with daily battles.

The only difference between the bee and I was that the bee was only in the glass jar for 10 minutes before it was able to fly to freedom. I was within my jar for 16 years before the lid was removed. It took a lot of support, patience, acceptance, and traveling to dark places before that lid could come off. When I discuss stigma that is one thing I try to explain. How removing the lid is not a simple task and sometimes it takes more than one person to help take it off. That for those stuck inside the jar we often wonder how long those little holes will allow us to breath. Some of us are able to remove the lid and some have to learn how to live with the lid constantly on. It is not easy and never something we asked for.

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Kindness

Since my depression and mental breakdown, my life has changed. One aspect is how I now see myself and others. Kindness has become an important aspect of life that I now recognize more readily. I have a more complete understanding of myself and the world around me. Being kind is so important. It’s the most powerful way to have a positive impact on people. And it’s readily accessible to all.

kindnessThese last few years I‘ve had the time, and inclination, to reflect on many aspects of my life.

My days practicing law were often rewarding, exciting and certainly pressure packed. But to me it was ‘good pressure’ and I functioned and thrived with deadlines.

Looking back, I wonder what kind of a person I was then. I think I was similar to who I am now.  I was certainly “busy” which is so commonly used as a measure of success. As busy as I was, I always made time for family and certain friends. I thought of others before myself. But I would learn that was also my depression taking hold. I didn’t take time or do for myself, the kind things I did for others.

I tried to be a “kind lawyer”, which could be an oxymoron!  It was difficult to be kind and also represent a client well in an adversarial system. I remember one case in particular. In the middle of a 5 day trial, I knew that my asking certain questions of one witness would likely make the witness emotional, and perhaps even breakdown in tears. But as a lawyer, I had to ask. I delivered my lines of inquiry, and yes, tears and heartache occurred. We were successful at the end of the trial, but at what price? So kindness was sometimes absent. That troubled me.

In my personal life, I believe I was kind. At least, this I was told. But my “lawyer thinking” seeped in at times, especially during intense discussions or arguments. I was told that too!

Since my depression and mental breakdown, my life has changed. One aspect is how I now see myself and others.

Kindness has become an important aspect of life that I now recognize more readily. I have a more complete understanding of myself and the world around me. Being kind is so important. It’s the most powerful way to have a positive impact on people. And it’s readily accessible to all.

Since my new-found awareness I hear more often that I am a kind person. One “special person” even says “sweet”.  Hey, I will take that! It’s a kindness returned.

After my breakdown, I learned firsthand about people being unkind. Of all my friends, only two came forward to provide some help. Acceptance and understating of mental illness wasn’t part of my friends’ thinking. No one even offered to learn what to do to help. Stigma ruled.

But be careful of false comfort. After so many friends abandoned me, I found myself quite anxious to meet new people, or even to rekindle old friendships. I thought anyone would be great to have around. I was wrong. Not all relationships are good and healthy. I now choose my circle with great care.

Of the people in my life now, my family is the kindest, most supportive circle providing limitless acceptance and understanding. They’ve been with me since the day I was diagnosed.

New friends have been wonderful to meet. Most are connected in some manner with mental health awareness.  So they “get it”, well, most of the time!

My current life is full of kindness. I am still learning too.

I was recently on a trip with the “special one”.  Our first trip!   The first afternoon, we went for a walk while we waited for our hotel room to be available. We were approached by people with flyers offering everything from a bus tour of the city to a visit to a club. I simply, and quickly, brushed past and said curtly, “no thanks”.  My friend noted I could have been kinder. She was correct. These people we simply doing their job, trying to have a better life. During the next few days, we stopped to talk with some of the flyer people and actually had conversations that were full of interest and humour.

Most times kindness doesn’t require a great effort, perhaps no effort at all.  Smile to a person you pass on the sidewalk. Hold a door open for someone. Help someone with luggage on a flight. Slow down and enjoy the people around you, even strangers.

We have such power to help or hurt people, by what we say and do, and what we don’t say or do.

Also, and this may be a difficult one, be kind to yourself. I wasn’t for years and I still have to acknowledge this and make it a priority. I used to confuse being kind to myself with being selfish. They are not the same at all.

Don’t make it perfunctory kindness though – make it meaningful for both yourself and the other person. Your smile will get a smile in return. Now that’s kindness that can change the day.

A simple text from the “special one” saying” I miss you” makes my life brighter. Even at 3am!

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Statistics Don’t Lie

Maybe it’s you or the person next to you selecting their tomatoes at the market that manage a serious mental health diagnoses. We have no bandages, wheelchairs, casts or shaved heads to signify a medical health struggle. Those fighting mental illness blend into our society without notice or aplomb. Our Band-Aids are camouflaged by hard-to-muster “normal” emotions in a not so normal world.

mom.d.kissingOne in Four

Personal fear of judgement held me silent and almost debilitated my management of Bipolar I disorder. For 18 years I bit my tongue.

But after almost two decades of fear and embarrassment, I publicly introduced myself with my full name and the mental health challenges I have worked so diligently to overcome. I openly stated at a national press conference that I manage my Bipolar I diagnoses successfully. Frankly, I expected confetti and balloons – but in reality no one was shocked by this more and more commonly discussed global epidemic.

Remember one in four manage a mental illness.

Having been diagnosed in 1997, life wasn’t as open to discussing these realities. I lived almost two decades fearful of being excluded from society by something being “off”, but still dreadfully alone due to the self-loathing and paranoia that came with the fear of someone “finding out”.

But through those silent years I learned that asking for help from your closest community pays off. I grew to know myself as Kate – not Bipolar Kate.

Compliancy Worked

I’ve always vowed to be compliant with my health regime. With humility I can confidently say I’ve grown to thrive. Blessed with a full life complete with family, friends, a strong community and furthermore my own little family with my supportive, loving husband and our little bug of a five year old son, and I’ll say it again: “I’m living a life I never dreamed possible”.

Don’t get me wrong – my life can be sloppy and there are many tangled lines in my web – but that’s me being Kate; not a Bipolar psychosis shining through. When I talk fast, I know it’s because I harken from the Northeast. When I don’t get enough sleep, it’s typically because I haven’t exercised or am managing too much stress.

My medication regime does its job. I feel no shame. I tell my story. I keep the conversation alive in the hopes that maybe one person will relate and maybe better manage their diagnoses for themselves and the people around them.

All that said, my story is too rare.

I’m Lucky

I spent the past year working for a coalition of churches who worked tirelessly to feed the homeless and those chronically in need. I learned a lot. I’m not a doctor, but many of those I met throughout my time helping the cause taught me some truths about mental illness.

Remember one of the first statistics I learned when first talking out, blogging and being an active mental health advocate is that one in four people manage – or should be managing – a mental illness.

Think about it: Maybe it’s you or the person next to you selecting their tomatoes at the market that manage a serious mental health diagnoses. We have no bandages, wheelchairs, casts or shaved heads to signify a medical health struggle. Those fighting mental illness blend into our society without notice or aplomb. Our Band-Aids are camouflaged by hard-to-muster “normal” emotions in a not so normal world.

Many of the one in four are not treated as they’re scared to ask for help – usually due to the mountainous but subtle effects of stigma. Others are on a flight to Mars while literally living behind a strip mall without anyone to offer support or guidance. And despite the stigma, I learned these aren’t those who meet the stereotypes by being violent or suicidal.

Advocate

Thriving is possible, but it’s not easy. This is why we need to reach out and talk – not only to eradicate judgement and stigma but also to provide aid to the many, many hopeless patients who don’t have day-to-day support to separate themselves from their diagnoses. It’s heartbreaking to think there could be help but it won’t be accepted or behavior doesn’t warrant an escorted trip to the hospital.

This is why government mental health regulations need to be managed by mental health wellness experts – not government employees without the knowledge to be of true assistance.

This is why we need not necessarily be grouped into a classification of “disabled”. I know folk managing a Bipolar diagnoses, for example, who are educators, senior management in the corporate arena, high level staff at non-profit organizations – essentially the throngs who have stopped, listened and obtained a regime to find compliancy and ultimately contribute within our society.

I’d hope so: we’re one in four.

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Chaos Theory

I can no more escape the effects of schizophrenia than I can escape being surrounded by air. We share the same space. It is symbiotic. Acknowledging that fact gives me the upper hand. It’s taken me years to surrender to this truth, and through acceptance I have afforded myself the necessary tools to survive.

butterfly effect photo June 11, 2015I didn’t see it coming. I didn’t want to drown. I recognized those first waves of panic, and immediately followed the self-care moves I’ve learned to trust. Drew a hot bath and hid from the cutlery. Got in the tub and hit speed dial. I needed a friendly voice – someone to talk to, a foothold in the common world. And really, that’s the goal: to stay connected to the rest of you as best I can. That’s something most people take for granted. I can’t. I won’t. Although I’m not my illness, I need to respect its power. Schizophrenia has a mind of its own. Times like yesterday, I think it wants to kill me.

It’s Day Two now, and I’m grounding myself. Drinking tea in the safety of my writing corner with my books and my raggedy old bear. On reentry I need familiar things, quiet things, magic things playing at everyday object. Something to buffer the aftershock of breaking down alone. Losing one’s mind, however briefly, is not for the faint of heart. Which lets me know I’m one of the strong ones.

I’ve heard it said that the Universe never closes a door without opening a window. In my case, one symptom never shows up without cracking open the whole box. Anxiety invites panic brings terror welcomes madness. It’s the dirty bomb I live with whose unpredictability is akin to catching lightning in a butterfly’s teeth.

Schizophrenia is misrepresented in the media’s shorthand because to depict a story visually, it has to be. It’s a way for them to illustrate the disordered mind. They’re looking for an answer that conforms to the conventional image presented to society for centuries. We butter our popcorn with cultural shame.

There is nothing romantic about a mind in psychosis. To the person trapped within it, the experience is immediate and terrifying. Everything is the same is familiar is not is significant is pointless and ultimately numb. Where’s the romance in that? Is the idea that a mind freed of restraint is somehow liberating? To whom? I was hostage to a nightmare yesterday. The fallout from those thoughts lingers with me as I type.

I do everything available to manage my illness, but there are days when it finds a way out. It slithers around the corners of therapy, slips under the covers of medication, and insinuates itself into my consciousness like the slickest symbiote’s kiss. I believe its seduction: I’m dying. The cynic would say we die each moment of our lives, but I am really dying. Right here, right now. I may already be dead, dreaming a cadaver’s dream of living and listening to this endless loop of a lie.

I am alone. It is the end of the End of Days. There is no love. Love is not real. It’s as fake as the artist’s pain that creates a masterpiece. Lips in a mirror, blood in the sand, the symbiote oozing past the doctor’s orders. That kind of alone. The crushing realization that no one will ever hold you close and listen to your secrets. Because you’re mad. You’re society’s bastard child, the news media’s scapegoat for every unsolved murder. You don’t deserve to be loved. You’re worthless. It’s not a bedtime story to teach you manners. This is it. You’re on your own. You’re outside the capsule, drifting into the cold mouth of space. Ground Control is a lie. Sorry, Major Tom. There’s nothing wrong. We can hear you, we just don’t care.

In the blink of an eye, the bulk of those last two paragraphs can saturate my very being. Persistent. Dull. A suffocating apprehension. There is no escape from thoughts like these. I know this – and my illness knows that I know. I pick up the phone and draw the bath and hide in the dark and pray for connection. I’ve trained myself to do this when the inevitable arrives. Yes, inevitable. And reliably unpredictable. It’s built into the disorder’s DNA. I can no more escape the effects of schizophrenia than I can escape being surrounded by air. We share the same space. It is symbiotic. Acknowledging that fact gives me the upper hand. It’s taken me years to surrender to this truth, and through acceptance I have afforded myself the necessary tools to survive.

I’m not perfect. I’m not trying to be. I work hard to live in harmony with a society that misunderstands me. But I don’t hold them in contempt. Why should I? Because they trivialize my disorder for box office receipts while dismissing mental illness as a myth? Giving in to such misguided negativity would only reinforce the stigma. No, thank you. I’d rather lasso that butterfly. It could change this hurricane’s path in a heartbeat.

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Taking the rough with the smooth

I have been told numerous times that recovery from mental illness is never straight forward, that there will be plenty of ups and downs. There will be days in which it will feel as if you have conquered Everest, but there will also be days in which you cannot scrape yourself out of bed. What we need to remember is that this is all okay.

believe photo June 2015A recent ‘blip’ has really knocked me for six, I cannot lie. Self – stigma is rife. I feel like a failure, and I am angry with myself for, in my eyes, sabotaging my own progress. Regardless of my mood I will usually ensure that I wake up at a decent hour, shower, open my blinds to let in the sunlight, and keep my home as tidy as possible. This has recently lapsed though, as I have fallen back into the trap of showering at dinner time and living in leggings and long socks to hide my fuzzy legs. And my flat, well, lets just say that, at times, it will resemble that of student halls. I am physically and mentally drained, with the smallest of tasks leaving me exhausted. I have clearly gained weight due to my medication, but I just do not have the energy to spare for a workout on my recently purchased cross trainer. And while many people my age are going on nights out and holding down careers, I rely heavily on two power naps just to get me through the day. I cannot think, I cannot concentrate, and, at times, I will even find myself struggling to string a sentence together. This infuriates me because not only am I powerless to lead a fulfilling life, to socialise and have a circle of friends, I am also slowly losing my ability to read and write, namely to blog and finish my Masters degree. I take great pride in my writing and my education, and I can feel it all slipping through my fingers alongside my intelligence.

Its a marathon, not a sprint

During a recent appointment with my psychiatrist I was told to ‘hold onto’ the hour a week I feel capable of spending with my friend. Hold onto it, like it is the solution to all of my problems. I am ashamed to admit it but I lost my cool with him. There he was seemingly patronising me and writing out yet another prescription, while I was seated before him, clinging onto the edge of sanity. I wanted to, well, throttle him. An hour a week? How dare he. How dare he remind me of how much of a loner and a ‘failure’ I have become. Five years ago I was working, doing my degree, and going out two nights a week, and now here I am having to make the most of a weekly Costa Coffee meet up. Actually, strike that, I am being prompted to make the most of it.

I have been told numerous times that recovery from mental illness is never straight forward, that there will be plenty of ups and downs. There will be days in which it will feel as if you have conquered Everest, but there will also be days in which you cannot scrape yourself out of bed. What we need to remember is that this is all okay. When physically ill many of us will often take our quilts down onto the sofa and have a movie marathon, allowing ourselves the time to relax and recuperate, without feeling guilty. So why is this any different when it comes to mental illness? After all, the main thing is that we try, and try again, reminding ourselves that it is never a set back, more a ‘boo boo’ or a blip. It never feels like that at the time though, and I realise that my writing this is so much easier than actually doing it.

I will often punish myself when it comes to my progress, mainly through impatience. Spending yet another day curled up on the sofa serves only as a reminder of the fact that yet another day has passed. We know that a stomach bug will pass within a few days and we will be back on our feet, but when it comes to a blip in our mental health, sadly there is no such time frame. I will become easily infuriated with myself for being unable to do ‘normal’ everyday tasks such as going shopping, going out for a meal or getting my hair done in a salon because I feel weak. Tasks that sound so simple, until it comes to carrying them out. This alone makes me a key example of how trying to remain positive in the face of such adversity has become one of life’s biggest challenges. As hard as it may be, I do believe that learning to take the rough with the smooth is key to our recovery. As Michael Josephson once said, “Take pride in how far you’ve come. Have faith in how far you can go. But don’t forget to enjoy the journey”. Now that is a quote to be added to the list.

 

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Stuck in the Starting Gate: When Parents Don’t See Eye to Eye

A child with anxiety, depression or bipolar disorder lives with emotions that play tricks and surprises on them. A panic attack comes on without warning in the middle of recess; the crushing weight of depression makes getting out of bed impossible, much less going to school; mania shows up without warning in the form of extreme irritability and anger that is targeted at friends and family.

I still remember vividly the moment when our daughter was diagnosed with bipolar disorder. I felt stifled by a thick, heavy fog of emotions – fear (make that terror), heartbreak, confusion and questions (oh so many questions). Only a small ray of light broke through, powered by a sense of relief that we finally knew what we were fighting. My husband had his own reactions and emotions, some parallel to mine, others very different. But there was one thing we solidly shared – an acceptance of the diagnosis. Over the next 12+ years there were times when we questioned aspects of the diagnosis, disagreed on treatment approaches, debated (or flat out argued about) parenting strategies. However we never stood at odds over whether or not our child had a serious and debilitating illness. At the time we had no idea just how much this would benefit our daughter and our family.

Since that day, I’ve had the opportunity to connect personally and professionally with 100’s of parents whose child has been diagnosed with, or shows significant signs of, mental illness. A large number of these families are what I would call ‘stuck in the starting gate’. By this I mean that one or the other parent is unable to pursue getting an assessment, unable to accept (or even consider) a diagnosis, unable to ask the question ‘now what’, unable to process the emotions. The parents generally agree that something is not right with their child, but from there their paths diverge.

There are a variety of reasons for this parental gridlock including:

  • fear of the unknown – what if my child can’t/won’t live out the hopes and dreams I hold for them?
  • lack of information or understanding about mental illness – mental illness is what we see in the news, the violence, the sociopath, the addict, the homeless . . . ;
  • fear of stigma, of their child being ostracized, excluded, labeled for life – how will my child ever have friends, have a job, graduate from high school . . . I believed no one would ever trust my daughter to babysit (I was wrong);
  • personal beliefs and experiences, including how we ourselves were parented or how our family of origin handled problems – more/less consequences, discipline, limits, freedom;
  • insecurities and self-doubt over our own parenting abilities – this will reflect directly on me, my parenting abilities, my genetics, will people think I too have a mental illness or what if I DO!!??;
  • general feelings of helplessness or lack of control

It helps to recognize that leading up to this point the family has likely been in some level of chaos or stress. That was certainly our case. Unlike strep throat, a broken arm or mono, symptoms of mental illness aren’t usually clear cut nor can they be measured by a throat culture, x-ray or blood test. Rather, the family has been struggling with challenges such as unpredictable, frightening or risky behaviors, extreme emotions, school refusal and/or dramatic changes in sleep patterns. Routines such as family dinners, getting to work on time (or at all), helping siblings with homework, celebrations or socializing with friends are disrupted or have completely fallen by the wayside. Conflict within the family is on the rise and rather than coming together as a team it’s every man, woman and child for themselves.

Whatever the underlying reasons, the cost of parental gridlock is immense and impacts the entire family. For starters, treatment is delayed, misguided or withheld entirely. There is no shortage of evidence showing that early intervention improves outcomes, slows or even reverses the progression of the illness and limits the disruption of a child’s normal developmental path socially, emotionally, physically and academically. Whether the intervention is therapy, medication, academic support, hospitalization or family counseling, the key point is to start rather than delay the process of assessing the situation, ruling out possible causes, developing a support network and working towards an accurate diagnosis and appropriate treatment options.

The longer that disagreements continue between parents, the deeper the divide, the more extensive the erosion on their relationship. I’ve seen couples recover, I’ve seen couples heal even if the marriage or relationship doesn’t survive. It can be done. But I’ve also seen far too many children caught in the crossfire of conflict. Parental fighting ranks as the biggest stressor for children of divorce. Before or after the marriage ends. This applies not only to the child with the illness but to siblings who cannot avoid being impacted by the stress and disruption of the family.

Another casualty of parental disagreement is the lack of safe boundaries for the child. Mental illness can be confusing and frightening. Think about it – most of us, at least for the majority of time, understand our emotions, why they change and what the root cause is. A child with anxiety, depression or bipolar disorder lives with emotions that play tricks and surprises on them. A panic attack comes on without warning in the middle of recess; the crushing weight of depression makes getting out of bed impossible, much less going to school; mania shows up without warning in the form of extreme irritability and anger that is targeted at friends and family. When parents can’t agree on how to parent through these stressful and frightening times, the child receives any number of mixed messages ranging from empathy and compassion to frustration, punishment and blame, to bribes, pleading and tears. This unpredictability leaves the child feeling as though they are in a room with no walls. No safety net, no predictability, no routine.

So what’s the solution? It’s no surprise that there isn’t a simple, one size fits all answer. However, there are some steps that families can take towards getting unstuck.

  1. Awareness: Acknowledging that differences exist is a starting point as well as recognizing fears that may contribute to strong reactions or inflexibility.
  2. Find a common goal: Rather than working against each other, find something that brings you together. Often, your child’s wellbeing or a calmer home life is a great starting point.
  3. Learn: Knowledge is a powerful antidote to fear. The more we know the better we can assess the situation in a calm and thoughtful way. We found that getting 2nd and 3rd opinions was a very effective way to put together the pieces of the puzzle. Common threads emerge leading to diagnosis and treatment.
  4. Compromise: Parents don’t have to agree on everything, and a certain degree of questioning or introducing other perspectives is helpful. Be open to trying different options, giving each sufficient time before switching gears. Remember, it’s not about either parent ‘winning’, it’s about the family winning through successful treatment.

For us, we found that working with a clinician (therapist, social worker or psychiatrist) was immensely helpful. Having an objective third party to moderate, provide feedback and offer insight made a world of difference.

Our world is not made up of exact science. There are ‘best practices’ for everything from education to open heart surgery to how to roast a turkey. But in reality, we have to find the ‘best practices’ that work for our child, for our family. The only guarantee that I can offer is that staying in gridlock will ensure that your child will not receive the help they need, whatever that help may be.

 

 

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Silence Is Not Allowed Here

As a registered nurse of 17 years I have worked with many patients who had a mental health diagnosis, but had I not looked at their chart I would have never known. I cannot even count on my two hands how many patients I have cared for whom were struggling. The fact of the matter is they are out there and by being silent we close a door that needs to be open.

June 2, 2015 imageMonday mornings are extremely difficult in our house. Having a 13-year-old daughter with anxiety disorder and depression can be overwhelming, especially when these issues started because of being bullied at her school. On Monday mornings she is coming off of a weekend without any of the anxiety triggers around her and her mind is not steady knowing she has to head to school. The bullying has improved, but the damage is done. So on these mornings I am the motivator.   It is like being a coach, but my team only has one player and she is my focus. This beautiful young lady is one of the reasons I speak openly about my past journey with mental health issues. Speaking about mental health issues can provide knowledge and understanding that may assist in helping to end the stigma that surrounds them. My perspective on these issues is one that has viewed both sides of the journey. I have been the person struggling to stay afloat and the family member living in constant worry.

Silence no longer is allowed in my spirit. My journey began as a teen when someone took something from me that I did not want taken, which led to my diagnosis of PTSD and major depression. It was a long and tough battle. My daughter’s circumstances although different are also similar in that she had something taken from her too, her voice. So now I speak not only for me, but for her too. I know there are many out there waking up each day not knowing whether they can get out of bed or whether their mind will be settled enough to fully embrace what may come. Mental health illnesses do not discriminate. You cannot walk down the street and tell if someone is tackling a mental health illness. There is no specific race, economic level, or age that it picks to take on. Mental health illnesses are no different than other diseases. As a registered nurse of 17 years I have worked with many patients who had a mental health diagnosis, but had I not looked at their chart I would have never known. I cannot even count on my two hands how many patients I have cared for whom were struggling. The fact of the matter is they are out there and by being silent we close a door that needs to be open.

As a mother who now helps my daughter get through each day I can see how lack of understanding and fear could lead to issues. My daughter is blessed in that I understand parts of her battle and can share my own stories with her. She has been trying to push us away a lot lately. So I shared with her how there were many people I hurt when I was battling my dark friend.   I hated myself back then and I felt like everyone else should hate me too. My ability to push people away was undeniably a talent. The only problem was that a few times I know I really hurt people. If they would not be pushed away by my daily rants then I would go to extremes and let them catch me in a lie knowing it would hurt them and they would walk away. I hated that I was covered in clouds and did not want anyone to join me on the journey. Simply put I was trapped in my own body. Internally I screamed to get out, but the other half of me insisted on making my travels a solo deal. The only problem was not everyone left my side and that meant the cloud coverage was not always thick. Sometimes for brief moments the sun would come out and I would remember whom I was, but I would also remember the pain I brought to others and then the clouds would gradually appear again.

These were some of the most difficult experiences to share with my daughter. After these conversations I thought about those who do not have my personal experience with a mental health illness and how they must look at those who are struggling. Perhaps they think it is like a light switch and it can be easily turned off. Or maybe they think the person fighting the battle should just be able to suck it up. I am sure they have many days of frustration simply because they do not understand. They have not personally had to live with a mental illness within their spirit and need voices to educate them. I often like to throw on different shoes and try to understand others perspectives. My shoes do not always fit right. That is why silence is not allowed here. Stigma does not end by being silent. It ends by being one large voice filled with many stories. Knowledge and our voices are the greatest gifts we can give.

 

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Come Talk To Me

I started speaking openly about depression and anxiety the moment I realized that sharing my experiences would help others in the same boat. It was important to me that they know that they’re not alone. If I had someone that talked to me when I was a youngster about his or her own encounters with despair, suicidal ideation and worthlessness, I believe I wouldn’t have white-knuckled my way through life, anticipating a tragedy every moment. I wouldn’t have been so hard on myself if I’d known I was dealing with a real illness, not something I conjured up.

BC2M_2015_MHAMonth_AdrienneI come from a family of talkers. At home, in public, it doesn’t make a difference. My relatives love, love, love to talk and have absolutely no problem striking up conversations with total strangers – any place, any time – waiting on line at the supermarket, or with the couple at the next table at a café. Even at social events where they know no one, they’ll go right up and introduce themselves. As the shy one, I’ve always been envious of their ability to chitchat with others, like it’s no big deal. For most of my life, I’ve had social anxiety combined with self-doubt, imagining myself invisible or wishing to go unnoticed, just so I wouldn’t have to talk.

As I got older, I found that my timid nature was holding me back from making new friends and finding a job. I hid my shyness well, but, because I didn’t talk about my self-doubts and depressive thoughts to anyone, keeping up the façade of a confident person led to intense anxiety. It seemed easier to camouflage myself as a “normal” person, rather than to reveal the scary thoughts of dying that plagued my brain – constantly. The few times I let it slip that I had been putting up with suicidal thoughts since adolescence didn’t go very well. I was immediately accused of making it up for shock value. Other times, depending on the crowd, just saying the word suicide became an instant repellent. I was dumbstruck that with three syllables I could clear a room. For close to 30 years I lived this way, unaware that I had a form of mental illness.

I started speaking openly about depression and anxiety the moment I realized that sharing my experiences would help others in the same boat. It was important to me that they know that they’re not alone. If I had someone that talked to me when I was a youngster about his or her own encounters with despair, suicidal ideation and worthlessness, I believe I wouldn’t have white-knuckled my way through life, anticipating a tragedy every moment. I wouldn’t have been so hard on myself if I’d known I was dealing with a real illness, not something I conjured up.

My depression and anxiety started when I was 12 years old. I talk about my journey with the crippling symptoms of these illnesses in the hopes of reaching the frightened and confused girls and boys who don’t comprehend what’s happening to them. I want to encourage them to get help, now, at this critical stage in development. While there is no shame in asking for help at any age, we can’t continue to let the culture of stigma and cruel judgments from others stand in the way of becoming our best selves and learning to enjoy life.

Once I began public speaking and writing about living with mental illness, people from all pockets of my life began to open up to me about their grapples with similar disorders. It’s incredible to witness the moment when someone who’d been struggling in silence, suddenly not feel so isolated and hopeless.

What I’ve learned is that while most people are secretly getting professional help, there are some who still refuse. Stigma is usually the main reason why they remain silent – the terror of having their family or peers see them as weak or cowardly keep them trapped. However, they’re also terrified of facing their own feelings in therapy.

I talk about living with mental illness and the consequences of not getting help. Yes, it’s scary to peel away the outer shell that the world sees and dig through the layers of buried pain. I get it. I was there, too, and it nearly killed me.

Depression makes life unreliable. What makes it so frightening is the unknown length of time it will last. It has the power to destroy days, weeks, and sometimes decades. I had convinced myself that the ugliness in my brain would stay forever, but now I know that my thought process was flawed. I talk about depression to show that with proper help, profound sadness and emptiness can dissipate. I want people to know that it’s okay to not be okay. Get help, talk to a therapist, psychiatrist, social worker. Devise a plan for yourself so that when you do get hit with depression, you’ve already created a strategy that will save your life.

My team of professionals has taught me how to effectively communicate what I need from my loved ones when I’m dealing with a bout of depression or anxiety. My family has become a critical part of my support network. While they still adore talking, they’ve also become experts at listening.

I talk about mental illness because it paves the road towards mental health.

 

 

 

 

 

 

 

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Lucky Thirteen

Having taken steps to improve my wellbeing through therapy and medication, the purchase of a medical bracelet and wallet card felt like the next appropriate move. I doubt that few will notice the eighth-inch high font at my wrist, but to a person trained to look for it, those thirteen letters engraved to the right of the Rod of Asclepius just might save my life.

Lucky 13 photo tag

SCHIZOPHRENIA is the word engraved on the front of my medical alert bracelet. On the back are the words SEE WALLET CARD.

My college bandmate had diabetes. He wore a med-alert bracelet. I saw the usefulness of it on one occasion. He’d gone into shock and we called for assistance. The nurse read his tag and went into action. He spent a while in the hospital and missed a few gigs. We camped at his bedside to cheer him up. I dyed my hair green and sang all his solos. We changed our name to The Incredible Hulk. He paid better attention to his physical health, and learned how to manage his symptoms.

I wasn’t so lucky with schizophrenia. I took the ten-ticket thrill ride through its house of horrors for years, never questioning why all hell’d broken loose. When I finally summoned the courage to ask, the answers I got were devastating.

The stigma against mental illness, particularly schizophrenia, had been part of society’s tapestry throughout my life. I was mired in self-loathing. It’s an understandable position that many of us take when we first receive our diagnosis. How can a person be expected to accept that their mind is lying to them, that they have no control over their thought processes? It is literally unthinkable. It is also a fact, medical and treatable. Manageable.

I’ve been through the humiliation of breaking down in public, cried in desperation as delusion swallowed me whole. I’ve struggled to find the right words at the wrong time to say nothing useful to someone who won’t listen.

I’ve lain curled in the fetal position on a busy sidewalk, frozen with fear and at a loss for words. With the name of my diagnosis printed on a tag, that loss can be averted. In a moment when expediency is warranted, it can save time and avoid confusion for both myself and a service provider.

During a panic attack or a psychotic episode my worst enemy is my inability to convey to another human being the exact nature of my situation. Unless they’ve been trained to decipher the complex coding of word salad, we’re both at a disadvantage. Valuable time is lost. I go deeper into the woods, and they don’t have a trail to follow. The tag would provide them with a map.

Having taken steps to improve my wellbeing through therapy and medication, the purchase of a medical bracelet and wallet card felt like the next appropriate move. I doubt that few will notice the eighth-inch high font at my wrist, but to a person trained to look for it, those thirteen letters engraved to the right of the Rod of Asclepius just might save my life.

To the professional whose focus is to see me stabile and out of harm’s way, the single word on my bracelet is not associated with ridicule or shame. It defines a medical condition that they are responding to. That tag is as direct a communication as is humanly possible. One word. Thirteen letters. My lucky number when madness gambles with my life.

An EMT will know to flip the bracelet over and read the information on the back. They anticipate this, and they’re prepared to follow through. In the past I have relied on a friend or my therapist to handle those details, but when I’m experiencing psychosis it’s a frustrating task for all parties concerned. The outcome is as unpredictable as my state of mind.

When I need immediate aid, voicemail is useless. Text messages might go unanswered. If communicating my needs becomes too challenging, I run the risk of being perceived as aggressive. This could lead to everything I hate and nothing I want to go through. Letting my bracelet do the talking, I have a better chance of avoiding the restraints and the heavy duty meds. For the price of a card in my wallet.

Concise information. Not the jagged run-on sentences of anxiety or the stunted bluntness of trauma. Ten minutes with a Sharpie, simple and rote, all the puzzle pieces in all the right places. Name, address, phone. Doctor, family, friend. Diagnosis, medical history, current meds and allergies. A snapshot of who I am and what I’m dealing with. Available to the person administering emergency services before we get to the hospital, a tip-sheet of my needs for when we arrive. By filling out this tiny card I am acting in my best interest. I am letting them know how to care for me. I am letting them know that I care about myself.

I’ll do anything I can today to help myself tomorrow. When the time comes, I’m willing to let the stainless steel tag do its job.

 

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Don't Forget to Pack Awareness

I’ve retooled a few coping skills for managing my currently stressful, topsy-turvy life. A diagnosis of bipolar doesn’t own me – it’s something in my life that I manage carefully. In this new frontier, it’s my responsibility to put this transition in perspective, keeping stress at bay and watching for telltale signals that my disorder could rear its ugly head again. Every day is different, but understanding how enormous change affects me is critical to maintaining my health.

May moving picRight now…

…my family and I are transitioning from our life-long home base in Massachusetts to a new home in Richmond, Virginia. This past year we struggled; job prospects in our home state were few, and the competition was fierce. So I knew supporting my husband’s amazing job opportunity in Richmond was paramount. I also knew that uprooting our little family from our beloved Massachusetts home would be stressful – and could possibly trigger a bipolar episode.

They say transitions take time, and I remind myself of this daily. I get it.

Letting go

Now we’re residing in a small apartment in an unknown neighborhood of a larger urban landscape in Virginia. Yup, we’re lost. We’re relatively alone. As Dr. Seuss would say, “We’re in the waiting place.” We’re hopeful our previous house sells so we can purchase one here – in one of several well-researched neighborhoods.

Letting go was, and is, still hard. I left my job in a flash one Friday. Saturday we had yard sales and packed. Sunday I drove ten hours to meet my husband in Virginia. Almost overnight, I had left my sense of self on the sidewalk with an old television and a vintage armchair.

Memories and stories tell great tales of our New England life, but now our family is from Virginia. It’s a lot to swallow. So I get up early and walk. I get my sleep. I try to eat relatively well.

Understand: Even positive change can be scary

Change is necessary, but the process can be long, confusing and tiring. We need patience, fortitude and self-awareness to negotiate the journey without major bumps and bruises. My goal? To fly away from my chrysalis as a healthier, happier and wiser butterfly.

I’ve retooled a few coping skills for managing my currently stressful, topsy-turvy life. A diagnosis of bipolar doesn’t own me – it’s something in my life that I manage carefully. In this new frontier, it’s my responsibility to put this transition in perspective, keeping stress at bay and watching for telltale signals that my disorder could rear its ugly head again. Every day is different, but understanding how enormous change affects me is critical to maintaining my health.

Step One – Garner support

My first calls in Virginia were aimed at building at least a temporary medical team. I met with a primary who I hoped could suggest my other clinicians. Going through this process from scratch made me realize how lucky I’ve been these past 18 years. I managed to secure a psychologist for therapy. My first psychiatrist appointment isn’t until August – and that was a tough nut to crack. Regardless, I have a nurse practitioner who can cut through the red tape if need be.

Having even this loose structure helps me build confidence about my mental wellness. I’m Kate – not bipolar Kate. Self-regulating my fears with my husband’s support makes this possible. Therapy will also serve me well.

Be aware – know the future is bright

I’m now looking forward to a positively changed life. What will it look like? How will we all change and grow? I’ve always lived day-to-day. Currently, I schedule and look forward to good things ahead. Daydreaming about our future helps me maintain hope.

Those good things ahead include our son beginning camp, where he can play with new friends. My mother is coming to visit, and we have some family here who have been beyond kind and accommodating. In the coming months, our son will start full-day kindergarten and I will get closer to my next job.

I haven’t always felt positive during this transition. But I get it: my husband is blissful and well-challenged in his new position. My turn will come soon enough. The biggest ledge on the mountain? Purchasing a new house to call home. Suddenly we’ll be back to community-building, school activities and successfully managing our professional lives.

My own work has included writing and advocating for mental health on local and national levels. I’m serving as a committee member for our new city’s Homeless Coalition; it has a large fundraiser in the fall. Hope and a sense of purpose help ground me.

Small gains count

Today’s star on the horizon? A consignment couch and lounge chair will be delivered to our apartment this afternoon. Who knew Nirvana could be achieved by sitting on a couch? This is another step toward establishing roots here in Virginia.

Soon, we’ll spread our new wings and soar. Stressful triggers are inevitable, but I’ll have the emotional awareness to redirect my flight plan if necessary. I get it. Thanks to good perspective, good support, all brands of hope and listening to my sense of awareness, I know everything’s going to be okay. And that’s priceless.

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Keep Talking by Pamela Harrington, Executive Director, BC2M

There is one week left of Mental Health Awareness Month, and we want to keep up the conversation about fighting stigma and discrimination!

May 26, 2015 Month End Graphic 4Dear Friend,

There is one week left of Mental Health Awareness Month, and we want to keep up the conversation about fighting stigma and discrimination!

We have been so inspired by the response to our #ITalk campaign, and cannot thank you enough for taking part in it. We want to continue this dialogue so please post or send your photo with 5 to 7 words about why you talk about mental health. And, check out our social media sites regularly as we will be featuring some of your entries on those pages.

We are keeping the conversation going with mybody Advanced Probiotic Skincare, who are dedicated to donating 1% of your purchases year-round, and 20% for their top sellers below during the month of May, to Bring Change 2 Mind. Please consider gifting yourself, family, and friends with products. Shop it forward for change!

This week, we are partnering with Discovery Life Channel on their programming event, PSYCH WEEK. Twin Peaks Actress and BC2M Advocate Mädchen Amick will serve as this year’s PSYCH WEEK Honorary Spokesperson. In addition to a series of mental health profiles, our latest PSA and videos will be featured throughout the week so please be sure to check your local listings and tune in.

The most recent #StrongerThanStigma report shows more than 1.2 Billion media impressions! We’re excited that so many people are seeing the PSA – it’s even lighting up Times Square! If you’ve seen the PSA, please let us know by taking a photo and sending it to us.

Additionally, we partnered on two amazing events in San Francisco this month.  Sidewalk Talk was created by two local therapists, Traci Ruble and Lily Sloane, who recruited almost 30 volunteers to set up chairs across the city on May 7th and invite people to talk as a way to remove the stigma around therapy and to promote listening. In response to their success, Sidewalk Talk LA has been scheduled for listening at locations around Los Angeles on May 26th.

On May 16th, Project Awareness SF organized volunteers to distribute single stem flowers and postcards containing information on local resources and mental health facts to people across the city. Each event was met with great success, and encouraged people to talk about mental health. These are just two examples of events that you could organize in your community to raise awareness and instill compassion.

Thank you for supporting us, lending your voice to the conversation, and bringing change!

Sincerely,
Pamela Harrington

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Things I Wish I’d Known While Raising A Son With Bipolar Disorder by Mädchen Amick

My husband and I raised a seemingly happy, healthy, and talented son, who flourished throughout his childhood until his freshman year of college. Beneath his tall, handsome, athletic, easy-going exterior was constant emotional turmoil. To everyone else, he was called the “golden boy” and it seemed like he had it all, but inside he was struggling with crippling swings of anxiety and depression.

IMG_1436My husband and I raised a seemingly happy, healthy, and talented son, who flourished throughout his childhood until his freshman year of college. Beneath his tall, handsome, athletic, easy-going exterior was constant emotional turmoil. To everyone else, he was called the “golden boy” and it seemed like he had it all, but inside he was struggling with crippling swings of anxiety and depression. As he was entering the University with exceptional grades and a D-1 Athletic Scholarship, we thought we had equipped him with the best tools we could give him to become a “successful” adult. In hindsight, there were indications that our son was battling the onset of bipolar disorder, and that we, as a family, lacked the mental health knowledge that we would eventually need. Thankfully, we had a very strong family unit: father, mother, son and daughter that always had open communication, strongly advocated for each other, and unconditional love for one another. Unfortunately, all of this didn’t guarantee that our family would be shielded from a disease that almost took our son’s life. Even though we were thrown into uncharted territory, and had to take the “learn as you go” approach, I do believe that through some very dark times, the trust that we had built was key in the eventual outcome of seeking help and recovery. Now that our son is a young adult, working hard to piece his life back together, I would like to share our experiences along our journey in hopes that it may help other families during theirs.

Beware of Mis-Diagnosed Learning Disorders:

High-school counselors called us in for a family meeting with concerns that our son may have ‘Attention Deficit Hyperactivity Disorder’ (ADHD). At the time, we considered this “hysteria” and “over-diagnosing”. Therefore, we took our time, did some research, spoke with other professionals, and as a family decided to not medicate but to closely watch his symptoms. In hindsight, we still believe it was the right decision. We have since learned that medications to treat ADHD or depression, unfortunately, can bring the early onset of a ‘psychotic episode’ (if one has an underlying mental illness). I point this out not to discount the legitimacy of learning disorders but merely to encourage families to educate themselves about mental health. I worry that when educational counselors and teachers call in families with concerns of a child having a learning disability that we aren’t always looking at the “complete picture.” In the way that our school system feels strongly about requiring vaccinations and annual physicals, I feel strongly that it is essential to add a mental health component to that annual physical.

The Signs of “Self-Medicating”:

As I said earlier, we sent both of our kids off to Universities with all of the tools we thought they would need to succeed. Unfortunately, we didn’t have the facts or education to know that when our son seemed to derail from his goals because of “excessive partying,” this was a sign that he was “self-medicating” the onset of a mental illness. Our son was unknowingly using alcohol to battle severe depression, along with marijuana to counter his mania. We struggled trying to understand why he would jeopardize his scholarship and academic career after how hard he had worked for them. What we later found out, and not until we were in the throws of his hospitalizations and treatment programs, was the impact of the biochemical imbalance that occurs with his illness. As parents, we have to walk that fine-line of letting our kids leave the nest to grow on their own and keep tabs on what could be warning signs of a much bigger problem. A classic sign, like in our son’s case, was binge drinking to the point of passing out. In most cases, the onset of a mental illness shows itself between the teenage years up until the mid 20’s. This is when our kids like to push the boundaries and experiment with drugs and alcohol. 1 out of 10 people in the U.S. will develop the disease of addiction after the age of 12, and 1 out of 3 people affected by the disease of addiction have a co-occurring mental illness. I want parents to know that while it may seem “normal” for college kids to experiment and push boundaries, sometimes there are deeper issues, and kids might be “self-medicating” in order to attempt to gain control of their feelings.

The Treatment for Addiction is Different than Mental Illness:

“Tough love” from family and friends for people who are struggling with addiction can be important in them seeking sobriety. However, when someone is having a “mental episode” (mania or depression), a different approach may be needed. In both cases, the individual needs to make the decision for themselves that they need the help, but someone who is in the swing of a ‘psychotic episode’ is experiencing delusional thinking. The biochemicals in their brain aren’t allowing them to think rationally. At first sight, your loved one can appear to be “high” but in actuality, they might be completely substance free. It can be so confusing when you’re dealing with two separate illnesses at the same time, like in our son’s case: his disorder initially presented itself as addiction. In hind-sight, we now recognize that our son’s grandiose thinking, rapid speech, and hyper sexuality (opposite of his “normal” behavior) were all classic signs of mania. The behavior of a person ‘intoxicated’ and a person having an ‘episode’ can look similar, but this is when family or friends who are familiar with their “baseline” need to intervene and make sure their loved one gets immediate medical attention.

True ‘Dual-Diagnosis’:

After four agonizing years of our son going through multiple hospitalizations and eight rehab centers, we have yet to find a true ‘Dual-Diagnosis: Substance Abuse and Mental Illness’ facility. A sad and nearly fatal incident was when our son, who was in a “highly reputable” and we feel, well-intentioned “dual-diagnosis facility,” was discharged and kicked out into the street for “non-compliant behavior,” when in reality, he was having a manic episode. The rehab center acted appropriately if (in their view) it had been “drug seeking behavior,” but this was not the case with our son. A true mental health facility would have had him see a doctor immediately to administer medication in order to stabilize his condition. Because his manic episode was allowed to spiral out of control, he ended up in an ICU, having to be resuscitated from alcohol poisoning. Unfortunately, as of now, our medical field has divided treatment for addiction and mental illness, and, quite frankly, there is very little funding for the mental health side. This has created a situation where the money lies in “addiction treatment”, and the facilities can get additional funding if they meet the “dual diagnosis” standard. The only criteria to qualify their facility, is if they provide the client the opportunity to see a psychiatrist once a month, when in actuality, what is necessary is an on-call psychiatrist, weekly psychotherapy, nurse administered medication compliance, and a staff trained and experienced in mental health. This means the responsibility to seek out the appropriate treatment center lies in your hands! Do your research to make sure that the facility is primarily a mental health treatment center. Be prepared to appeal to your insurance company and fight for an “adequate facility”. Advocate for your loved one!

Trial and Error:

1 in 4 people will be affected by a mental illness in the course of their lifetime. The biggest advice I can give loved ones who are supporting someone navigating a newly diagnosed mental illness is: patience, patience, patience. It can take up to a year for the brain to recover from neurological damage of a single ‘manic or depressive episode,’ so prevention of multiple episodes is crucial. Medical professionals will need to evaluate your loved one for an extended period of time in order to give a proper diagnoses. It will then take some frustrating “trials and errors” to find a successful combination of medications and psychotherapy. Once a balance of medication, therapy, and healthy living has been achieved, the work begins… Setting up a support system, being “med compliant,” and on-going communication with a psychiatrist is essential. Also, remember as the biochemicals in the body naturally change, the medications may also require adjustment. As much as I wish there was some “magic pill” to make it all go away, there just isn’t. This is a lifestyle adjustment for the whole family, and the sooner you can accept that, the sooner you and your loved one will heal and begin to flourish.

Stay the Course:

When someone is diagnosed with an illness like cancer, heart disease, Alzheimer’s, or Parkinson’s, we immediately feel compassion for his or her struggle. The latest research proves that the five major mental illnesses – depression, bipolar disorder, ADHD, schizophrenia, and autism are genetic. It just happens to affect the brain instead of another organ. Be sure to keep a calm attitude and attentive approach to your loved one’s needs. You are going to have to learn to separate your loved one’s “rational thinking” from their “biochemically induced delusional thinking.” Remember that even though people in the medical profession have good intentions, they don’t know your loved one the way you do. Family, friends, and significant others are the ones that know his or her “baseline.” What is their “normal” behavior? This is an essential key to the doctors’ ability to evaluate what medications and / or therapies are working. Working closely together with your loved one and their ‘treatment team’ will be essential in piecing together a rhythm that will eventually emerge. It is imperative to establish routines, and it is just as important to avoid triggers.

The Importance of Healthy Living:

As parents, we knew that sleep and exercise were essential to our family’s health, but we didn’t necessarily know how important they were to keep mood swings stable. In some people, like our son, not getting enough sleep can trigger mania. In fact, if you notice your loved one getting less and less sleep, it’s a strong indication they may be entering a manic phase. On the other end of the spectrum, regular exercise has proven to combat our son’s depression. We also knew that a good diet was needed for our bodies’ overall health, but like most people, we didn’t necessarily know the importance of eating specific “brain healthy” foods. We raised our kids with a focus on balance, structure, and routine, and even though we were sometimes accused of being the “strictest parents in town” by our children, we have since learned that these are key elements in not only the recovery of addiction but also maintaining mental stability. In addition to his medication, our son has found consistent ‘Transcendental Meditation’ practice to be extremely helpful for his mental stabilization. Finding the right form of meditation for the entire family can be very helpful.

In closing, I feel that the media can tend to sensationalize and only report the very dramatic and tragic events surrounding mental illness. I choose to focus on the many, many success stories. It is possible and very common to overcome and manage a mental illness. There isn’t any one “type” of person that it can affect; it doesn’t discriminate. You would be shocked at how many extremely successful individuals are not “suffering from”, but “living with” a disorder. Although, it is important to accept a diagnosis and work towards recovery, a label doesn’t solely define anyone. I hope to be joined by many others to work together to erase the stigma around mental illness and have an open and brave conversation about how important mental health is for everyone!

Thank you for allowing me to share my story,
Mädchen Amick
Ambassador, Bring Change 2 Mind

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No Stigma

I consider self confidence, self esteem, and self worth to be necessities of living well. Back in the dark days, stigma had stripped away what remained after depression took most. When friends don’t call or visit, when someone sees you on the street and turns to walk the other, stigma hurts. I was an empty person. My life was confined to my bedroom. But now, my self-confidence is running high.

My first time going public with my journey with depression was an article I had written – “How I Returned to a Life Worth Living”- for the National Post newspaper here in Canada. That was February 20, 1998. Since then I have written articles for several Bar Associations (I’m a lawyer) and spoken before many groups, from universities to corporate audiences. I even spoke at a local bar (the drinking kind) a few months ago. I was the “opening act”!

Bring Chance 2 Mind has been a true force in bringing a level of understanding and acceptance of mental health issues. In Canada, there has been an equally effective force in the Bell Let’s Talk Campaign. From national campaigns to local events, people have advocated from many perches.

I sit here today wondering if our voices, individually and collectively, have been heard. Are we connecting?

Two recent events have provided me with the opportunity to reflect.

I have participated in a mental health training program for the local police service for the last five years.

I remember the first time speaking to a dozen officers, a few of whom I knew. I spoke for an hour and expected lots of discussion to be generated on the subject given the small group and the informal circumstances. Alas, no questions and very few comments.  The silence was deafening.

Now, lets turn to a few weeks ago.  I spoke to a group of 45 police officers and firefighters. I was scheduled for 30-40 minutes.

After I finished, there were 7 officers with questions and comments. We had a very forthright discussion. Questions covered topics such as ‘how to recognize symptoms of mental illness’ and ‘how to approach someone who may need help’.

The officers wanted to be part of the discussion. One acknowledged his own struggles with PTSD. They recognized the need to understand and address mental health concerns in their workplace and at home. The unscheduled Q & A lasted about a half hour. I was proud of their willingness to have such an open discussion.

I felt a sense of accomplishment, not just for myself, but for everyone who has been advocating for so many years and also for the officers. We are making a difference! A change is underway.

The second event is on a more personal level. I consider myself to be happy and healthy. Through the last 15 years I have witnessed a lot, but I am still amazed at how some people treat me. I mentioned in my last blog that I had met someone special.

It was a random meeting a few months ago. I felt like I was sixteen again, not sure what to say or how to behave. I hadn’t spoken to many women since 2003.

I had no difficulty mentioning my journey with depression. It is part of my life, past and current. She readily understood. We discussed it at length, not only in terms of my having been ill, but also how it has changed how I approach living.

My depression certainly continues to be discussed, but it is simply part of everyday conversation. We talk about my presentations and my work for BC2M, as we discuss what she does.

I consider self confidence, self esteem, and self worth to be necessities of living well. Back in the dark days, stigma had stripped away what remained after depression took most. When friends don’t call or visit, when someone sees you on the street and turns to walk the other, stigma hurts. I was an empty person. My life was confined to my bedroom.

But now, my self-confidence is running high. My self-esteem is in a good and strong place. My self-worth is returning. All this before my friend surfaced!

It is overwhelming – in the best of ways – that someone actually likes me. My self-confidence is even stronger, my self esteem is rocking, my self-worth has increased dramatically. All of this has come about in three months. All these positive happenings have occurred because a friend treats me well and with respect. All of this is possible because we’ve done away with stigma and opened up conversations with honesty and humility.

We laugh. We share. We have been emotional…ok, I have! But, my tears are from happiness. Tears of acknowledging a moment as being special, and there have been many such moments.

At times, it’s still hard for me to grasp that such an exceptional woman likes me. But we’re working on that!

Stigma is not part of our relationship. In its place are awareness, acceptance, and understanding.

#StartTheConversation and #EndTheStigma

 

 

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Grieving For The Old Me

I do believe that non - sufferers will never fully understand the level of strength and courage it takes for a person to live with an anxiety disorder. Since experiencing those first few panic attacks I have become scared of, well, everything. I was always a strong person with a stiff upper lip.

grief

When you think of the word ‘anxiety’ what image fills your mind? Those ‘butterflies’ fluttering around in your stomach before you take your driving test? That dry mouth and stutter you get before a class presentation? How about sweaty palms on your first day in school or a new job? So what happens when anxiety becomes a life – limiting disorder? Panic Disorder, Agoraphobia, Social Phobia, Depersonalisation, the list seems endless.

I do believe that non – sufferers will never fully understand the level of strength and courage it takes for a person to live with an anxiety disorder. Since experiencing those first few panic attacks I have become scared of, well, everything.  I was always a strong person with a stiff upper lip. I had spent my childhood and teen years grieving for my mother, something which no child should ever have to go through, and yet here I am now a prisoner of my own mind, powerless to release its grasp. I bear no visible scars, no rash or foaming at the mouth. To an outsider I am simply pale and shaking through my inability to catch my breath – something that should come so naturally. Deep breaths, they say. Pfft. Like it is that easy.

This may be the reason as to why those little ‘share this and you will have….’ posts you see being shared so freely on Facebook infuriate me so much. Anything to do with money and luck will accumulate numerous likes and shares, but throw a mental health awareness ribbon into the mix and it is a totally different story. I have used Facebook as a platform of understanding on numerous occasions, to no avail. Sadly, many just do not want to know. Maybe they would if they were made to spend a day walking in the shoes of a mental health sufferer.

I have come to fear people, the outdoors and the unknown. I fear failure, passing out, and losing my mind indefinitely, to name but a few. Almost overnight I went from being a bright and confident twenty year old with a close circle of friends to a shell of my former self, a recluse. Once an outgoing 19/20 year old, I was working (well, more skiving) part – time at McDonalds while studying for my degree. I would happily attend work nights out and have my work friends round mine on a Friday/Saturday night for pre – drinks and an after party following a night in town. Heck, I was unbeatable when it came to drinking games as I managed to knock back a pint of some lethal concoction in six seconds and still go back for more. I was never the most popular person but I was never lonely either. I had friends to go to the cinema and bowling with, friends to get tattooed with, and friends to turn to when I needed cheering up. I had rebuilt a life for myself in Manchester following our move here a few months before and I was genuinely happy.

As the saying goes ‘things were on the up’, or so I thought as, following that initial taste of panic, I lost all of my friends and soon came to fear alcohol and leaving the safety of my home. That feeling of not being in control, that I had to put all of my trust in the bartender to pour me out a ‘safe’ measure and in those surrounding me to not hurt me. What if I passed out? People would laugh at me, and point and stare. I am not the skinniest nor am I the prettiest so people would be bound to comment on my appearance. What if I ended up being taken to hospital? I would have to stay away from home. Plus, I am totally crackers so they would definitely have me sectioned for the foreseeable.

I do believe that this is one of the most difficult parts of my illness to live with as I am surrounded by pictures of people my age (24) and older living their lives, going on holiday and nights out. It sounds so simple, does it not? “You only get one life so you should live it”. I am sure said people would not be saying this if they were made to face their greatest fears on a daily basis. Having a tarantula constantly perched on their shoulder, or spending their time confined to a lift. I am not bitter, but I will admit that there are days in which I cannot breathe through sheer jealousy. That should be me. I am a good person. What did I do to deserve this? It becomes all too easy for others to tell us to ‘stay positive’, that ‘we will get there’. I have become a professional at putting on a front. I wear a smile everyday because I do not not want people to know that inside I am dying, but there are days in which I struggle to believe that I will ever overcome this. Anxiety has sunk its claws in far too deep and with each panic attack and worsening of my Depersonalisation comes a greater distance between ‘the old Krista and me’. I cannot spend the rest of my life like this.

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Elephant Talk

I encourage everyone to talk about mental health. Tell your family, your friends, your therapist, your doctor. Tell them exactly how it feels. If they’re really there for you, they’ll listen. If not, it’s good practice for you. They’ll never know you the way you know you if you don’t talk about it. Living with stigma is a lonely gig. Mental health is better. So talk about it.

BC2M_2015_MHAMonth_HenryI talk about mental health because no one is invisible. Because everyone has a story to share. I talk about mental health because I can. There was a time when I couldn’t.

In January 2010 I was diagnosed with schizophrenia. Until that morning, I’d spent my life thinking that the rest of the world – not me – had gone mad. I’ve lost friends, jobs, and loved ones to the workings of my private universe. There are days when those losses threaten to tear me apart. I have to remind myself that it’s a daily process, one which includes describing my experiences and sharing my feelings. Schizophrenia depletes my resources for interaction. I rebuild them by talking.

A semester spent in psychosis derailed my college career. I was admitted to hospital, administered medication, and dismissed without further treatment or follow-up – just another art student too crazy for his own good. Had the staff been better trained and our culture better educated, the many years of pain and heartache to follow might have been avoided.

I dropped out of school, moved into an attic, and lived like a recluse. I ate nothing and slept even less. Music, poetry, and painting consumed my waking hours. At night I roamed the streets in search of living gargoyles. My “eccentric ways” were attributed to my being an artist. If anyone had their suspicions, they wouldn’t speak up. Mental illness was the stuff of gossip, grist for the playwrights and newscasters.

My songs caught the attention of a local record label. I was signed to them shortly thereafter. I recorded in the wee hours because I didn’t sleep. Not eating helped me fit into my costumes. My battle with anorexia went undiagnosed in an image oriented industry. Public opinion was that men didn’t suffer from eating disorders, a lie America still tells itself.

The pressures of the music industry eventually took their toll. I watched a black ops team arrest the district attorney, unaware that it wasn’t really happening. I stood helpless as violence engulfed Hollywood Boulevard. Ritual mass suicide at the video arcade. I was terrified. In reality it hadn’t happened. My bandmates were plotting to drown me in the pool behind our motel – which they weren’t. I was propositioned by industry bigwigs in dark places for dirty money. Which did happen, sadly, because my life had become that secretive, that desperate.

The label dissolved our contract due to my unstable behavior and increasing isolation. I felt the world slipping away. My fiancé broke off our engagement for similar reasons; she’d endured my paranoia and incoherence long enough. Pulling her out of bed and into the street because I believed a plane had crashed into our apartment was the last straw. On the train ride back to my empty attic I came up with a plan to kill myself.

I had no comprehension that my thoughts weren’t normal. The rest of the world had gone mad, not me. My father demanded I be voluntarily committed. Stigma and shame put us at a distance that took years to resolve. On his deathbed I told him I was finally getting help. I kissed his forehead and told him that I loved him. He was nearly deaf by then. He couldn’t speak. His body was shutting down, but he managed a single tear. In that moment, in our own way, we talked about mental health.

Eight months later I received my diagnosis and began the long trek of self- education. Two years into treatment I found BringChange2Mind. Because I understood that most basic of tenets – that people share their stories to know one another better – I decided to submit mine. I hoped that another person living with schizophrenia might take comfort in knowing that they weren’t alone.

Our world is stigmatized because our disorders are invisible. But we’re not. You can’t put a plaster cast on a broken mind, but you can tell your story. Yes, it’s daunting. That’s the challenge. You might have concerns about being misunderstood, especially if people have judged you before. But if they turn out to be an ally, that’s a worthwhile gamble.

I encourage everyone to talk about mental health. Tell your family, your friends, your therapist, your doctor. Tell them exactly how it feels. If they’re really there for you, they’ll listen. If not, it’s good practice for you. They’ll never know you the way you know you if you don’t talk about it. Living with stigma is a lonely gig. Mental health is better. So talk about it. Someone who cares is going to listen. Someone who cares can help. No matter how weird it gets, you’re not alone. That’s your illness trying to take control. Take it back. It’s your life. Talk about it.

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Thank You Depression

Thank you doubters and gossipers. You watched me fall and doubted my ability to get back up. Perhaps you talked about me and told people I was crazy. Maybe you think that I should remain silent about my past journeys. I forgive you. Truthfully, I am grateful for your presence in my life. You have taught me that it is okay to be honest and have a strong voice.

Thank you Depression Photo

My daughter, who at 13 is one of the most beautiful spirits I know, inspires this post. This morning was a difficult morning for her. She struggles with depression/anxiety due to the bullying she has been through at her school. There are mornings where getting her out of bed takes over 20 minutes and this was one of those mornings. She knows about my past journey with PTSD and major depression and knows I survived the many dark paths I journeyed on. This morning I discussed with her my personal letter of thanks. It has not been written on paper until now. Truly it has just been a mental note penciled in within my mind, but my daughter told me I needed to share it.

Dear Universe:

I am almost 40 and for the past few years I have embraced the fact that I am reaching an age that at one time I never thought I would attain. Ten years ago I sat in an ER getting my stomach emptied of all the high blood pressure medicine I had taken. It was a moment that could have taken me from this world. My depression and PTSD almost won. In that very moment something also began to change. A light came into my soul and began to slightly flicker. It would take two years before that flicker became a blazing light within me. In those two years I would become pregnant and give birth to my second child plus lose my father. The light blazed within me and I realized I was finally in control and no longer needed to hold my dark friend’s hand. I became grateful. Today I will write my letter of thanks.

Thank you depression and PTSD for allowing me to know true darkness and helping me to see my strength. You were a dear friend when I thought I had no one else. You deceived and suffocated me. Yet on our journey you introduced me to determination and emotion that have now become my closest friends. You reminded me that I am capable of standing tall. Through you I was able to meet amazing people. You taught me to let go and embrace each moment. I will always be grateful for our many walks together, but you are a friendship I will never embrace again. Now I tell our stories to help others.

Thank you doubters and gossipers. You watched me fall and doubted my ability to get back up. Perhaps you talked about me and told people I was crazy. Maybe you think that I should remain silent about my past journeys. I forgive you. Truthfully, I am grateful for your presence in my life. You have taught me that it is okay to be honest and have a strong voice. I have seen that there are others who may be walking paths I once did and they need me to speak. Your doubts and the words you threw that hurt me only drove me to be stronger. You allowed me to see that in life it is okay if there are people who do not like or believe in me. I have learned how to cheer for everyone, even those who do not cheer in return. Through you I have learned to love who I am. I own my emotions just as you own yours. This is how we end stigma.

Thank you silence. I used to fear you. There was a time I thought spending time with you would only make my dark friend hold me tighter. However, I have learned that I am an introvert. When I tried to be an extrovert and fit in with others I was only allowing my dark friend to have a stronger grasp on my spirit. By spending many a quiet moment meditating or running I have learned to love who I am. Through the silence I have found myself.

Thank you transparency. You allowed emotions to honestly enter my spirit and for me to embrace them without fear. There is a clarity now that was not present before. Through your presence I have been able to truly embrace those people who love me and have constantly believed in me. You have made the world more clear and vibrant. You have allowed me to live without fear of showing my emotions and myself.

Thank you mountains. I have fallen down many of you. Climbing up is the hardest part. However, one day I reached the top. I looked out over the world and I let go. It was the scariest and most invigorating moment in my life. Your vast peaks and crooked edges reminded me that I will struggle many times climbing you, but it will be worth it.

Thank you universe.

Sincerely,

Jolene

 

 

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Four Generations of Mothers

My mother developed my backbone. I talked to her about everything and she was very wise. She allowed me to feel strong and brave. She was unpretentious and generous and led a very simple life.

My mom passed away barely two months ago. It feels like she passed only yesterday, or even today. I hear her voice in my thoughts and I see her face in my imagination but I can’t call her; I could, but she isn’t there to answer. Her house is more quiet than ever before, quieter even than when she was sleeping. How is that possible?

Mothers are special. Giving birth can be frightening and painful but is, in most cases, joyous and awe-inspiring. And only mothers get to do it! Only mothers get to nurse and bond in this miraculous way. And many times it’s mothers who are with their daughters, as I was, when they are giving birth.

I was blessed with the full circle: my mother in her last decline, my granddaughter being born. We did get to travel down to Wyoming twice so Mom could see the baby. She held her close, tears in her eyes, and said, “Now I feel like my life was worth something.” Mom saw the full circle and, as great-grandmother, appreciated that the baby was a new beginning, a new life with her blood in the baby’s veins.

Being a mother is hard work. I am reminded of this every day as I watch my daughter. She’s a really wonderful mother. By wonderful, I mean she has fun with her daughter. Love and fun and laughter I think are the best elements for babies. She’s also taught the baby how to communicate through sign language which is, I was told, the new rage. I’m astounded when I see my one year old granddaughter using sign to tell us what she needs and wants. It’s a new world! The baby also knows how to activate my phone which she then plays with her thumbs and she knows which of my remotes turns on my TV. I am, however, grateful that my daughter and her husband have no TV in their home and no iPad yet – they read books.

I realize how naïve this sounds but I was born in 1953 and the most radical change in communications when I was young was big, clunky telephones evolving to push buttons from rotary dials!

I am besotted with my children. Now that they’re grown and no longer live with me I can laugh about some of the horrible teenager situations that I dealt with. I’m sure I wasn’t the most wonderful mother at times either. I lived with un- medicated bipolar 1 disorder for most of their young lives. I yelled and screamed a lot. I was paralyzed a lot. But I loved them. Love has a way of seeping into harsh edges. We can’t fake love. We can’t even fake affection. My children knew I loved them when they were little. I’m sure they wondered if I loved them when they were teenagers!

My mother developed my backbone. I talked to her about everything and she was very wise. She allowed me to feel strong and brave. She was unpretentious and generous and led a very simple life. She loved dogs and had four when she passed away. She loved horses and when she was younger she had two Icelandic horses who I took care of when she couldn’t any more. She was the least self-centered person I know. She was a storyteller and could recite poems and stories learned in her childhood. She was born in 1924 and saw things happening in our current world that she just couldn’t understand. She made a rule that when we were visiting her there would be no laptops on the dining room table. She loved books – the heft of them, the smell of them, the look of them. She surrounded herself with books, the majority non-fiction. She loved to play backgammon although she and I always played dominoes.

Mom had five children but her first son died from a bad heart. I was her last, her baby. She was of the generation of women who put their husbands first and because of this she didn’t pursue her talents of drawing and writing and photography. If souls come back around I’m sure her soul will be born into an artist again.

I’ve been watching leaves unfurl on the trees in the small orchard where I live. They are right outside my living room window. Each morning they are greener, there are more flowers, pink and white. Tears come more easily now that Mom is gone. I think of her and wish she could see the orchard come to life after the dormant winter. But it is possible that she sees, or perhaps she is the leaves and the blossoms. Perhaps she is everything I see from this window and beyond, just as she is in me and my daughter and my granddaughter. Perhaps.

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Why #ITalk About Mental Health by David Watson, BC2M Board Chair

I never aspired to be a mental health advocate. I’m an entrepreneur, a business guy, a creative type with an appreciation for the bottom line. If things don’t work, you fix them. When one of my three beautiful children became sick with a mental illness, our family faced tremendous pain and confusion. Stigma kept our struggle private, fear kept us on heightened alert, and treatment options were hard to navigate. We were now on the front lines of mental illness, and experiencing stigma first hand.

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Every story shared brings change and helps to end stigma. Here’s mine:

I never aspired to be a mental health advocate. I’m an entrepreneur, a business guy, a creative type with an appreciation for the bottom line. If things don’t work, you fix them.

When one of my three beautiful children became sick with a mental illness, our family faced tremendous pain and confusion. Stigma kept our struggle private, fear kept us on heightened alert, and treatment options were hard to navigate. We were now on the front lines of mental illness, and experiencing stigma first hand.

My daughter, Emily, lost her courageous battle with a borderline personality disorder and depression on March 17, 2013. She is forever in our hearts.

In her honor, our family has vowed to end the terrible stigma that surrounds mental health challenges and to promote wellness. Our hope is that other families never confront such pain and loss.

As the Chairman of the Board of BC2M, I am humbled to see the number of people that we have touched through our website, PSAs, social media sites, and programs. We are creating change, and starting conversations where there once was silence.

To keep the conversation going, I am compelled to help raise funds to support BC2M. This month, my company, mybody Advanced Probiotic Skincare, will partner to support Bring Change 2 Mind by donating 20% of the proceeds from the sales of our best selling products. I hope you will consider purchasing a product or donating to support this mission. mybody skincare products use innovative probiotic technology to bring positive change to skin for better health and wellness, inside and out.

That’s my story, and one example of how I am going to fight stigma. What’s yours?

Join us. Help us. #StartTheConversation


 

David Watson is the Chair of Bring Change 2 Mind’s Board of Directors, and the Owner and Managing Partner of mybody, a skincare company dedicated to the wellness of the skin and body.

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Let's Talk About Mental Health by Pamela Harrington, BC2M Executive Director

I talk about mental health because stigma prevents too many people from seeking the help or support that they may need. At BC2M, we talk about this 365 days a year. And, each May, we talk about it with a wider audience reached through the increased media attention generated by Mental Health Awareness Month.

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I talk about mental health because stigma prevents too many people from seeking the help or support that they may need. At BC2M, we talk about this 365 days a year. And, each May, we talk about it with a wider audience reached through the increased media attention generated by Mental Health Awareness Month.

Are you talking about mental health? What are you saying? We want to know!

On May 1st, we are launching a new campaign, #ITalk, as a way to start and continue these conversations around the world. Throughout the month, we will be sharing stories, images, and reasons why members of the BC2M community are talking about mental health, and we hope that you will choose to join us. To share your #ITalk motivation, please send or post your photo with 5 to 7 words on why you talk about mental health.

Additionally, please continue to send us photos and messages when you see our latest PSA, #StrongerThanStigma. We love hearing from you about where this powerful piece is raising awareness around the unique challenges that men face when discussing mental health. During May, it will be in heavy rotation on television, in theaters, print, and outdoor placements, including on the big digital screens in New York City’s Times Square.

This month, and every month, we thank you for your incredible support, and for your continued efforts to help BC2M start the conversation and end the stigma. Let’s talk about mental health.

Sincerely,
Pamela Harrington
Executive Director

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The Silent Apartheid

Changing the name will not undo years of prejudicial thinking. People living with schizophrenia will still feel the sting of the invisible apartheid. Authorities will still profile us as violent criminals, even when statistics prove otherwise. Society will continue to abandon their own over misunderstandings that have everything to do with the symptoms, and nothing to do with the word attached to the diagnosis.

light boy April 30, 2015I’ve only met one person who could read, and fluently speak, ancient Greek. A master of a dozen languages, he knew the roots and origins of almost any given word, an arcane talent which, I would wager, most people do not possess.

As an adolescent, I loved the song “Manic Depression” by Jimi Hendrix. His lyrics spoke of love trapped in a maelstrom of thoughts and emotions. I asked my stepmother what the title meant. Her lay explanation was simple and devoid of any judgement: manic-depression was a mental disorder defined by episodes of inconsolable sadness and extreme excitement. The name described the condition.

In 1980 the term manic-depression was changed to bipolar disorder, to more clearly distinguish it from clinical depression. I never once heard a bully shame someone for experiencing manic-depression, but cries of “You’re so bipolar!” continue to assault those suffering from the illness. Perhaps the name change wasn’t for the better, or it might be that you just can’t enlighten a bigot. Then again, there’s no reason not to try.

The psychiatric community is currently proposing to change the name of schizophrenia to something they say will be more palatable to the patient and easier on the clinician. Over four dozen papers have been published supporting this rebrand, citing claims that it would eradicate stigma and discrimination. Co-opting their parlance, I’d call that magical thinking.

The advertising term rebrand suggests that the previous brand has grown stale in the marketplace. An Old English word of Germanic origin, brand originally meant burning. The verb sense – to permanently mark an animal, criminal, or slave with a branding iron – dates from late Middle English, when it defined a trait that caused a person public shame. Branding has further roots in the ancient Greek for the making of said mark, a word that I assume you’re more familiar with, the mark of disgrace: stigma.

A case could be made that rebranding schizophrenia will do more to reinforce the weight of existing stigm