Blog

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.

Taming the Lion

I pride myself on having married a man who loves me dearly, and the brilliant light I’m gifted with daily from our beautiful son. I’m a productive, active member of our community, living a life I never dreamed possible.

I was living in New York City when my manic mind told me it was imperative that I journey through a winding mid-town scavenger hunt. I was listening to the voices in my head and had no control over my racing thoughts or actions.

So off I went – first calling the White House asking to speak to the President so I could tell him of my plans, then jaunting over to the Empire State Building with aspirations to reach the top. I wasn’t arrested, but escorted out. At the New York Public Library – for some reason – the beautiful, stone lions seemed very important. But the library wasn’t public for me.

At the time, this adventure was a swirling whirlwind of fun. It’s scary to think about now, but in that moment I was a blossoming genius.

The President obviously wasn’t going to help, nor was security at both the Empire State Building and the Library. I was a nuisance to these characters in my tale.

Far more frightening was the reality that my so-called friends only fought with me and triggered further manic outbursts. I was dismissed – literally – when my roommate angrily contacted my parents requesting they remove me from the City and escort me to their home in Massachusetts. In the end, this call home was a gift.

I was put on a small commuter plane to Providence, RI. Before being seated to depart, I stacked about 20 complimentary magazines into my suitcase. In flight, I decided a precious piece of jewelry belonged in the air duct. So down the shoot it went. I later worried we might crash due to my rash actions. The reality of my situation began to sink in and I was horrified. Horrified not by my intense mania, but that my NYC high may soon plummet.

When I landed at my childhood home — without the buzz of the City, my symptoms became more pronounced. The voices were louder and my actions even more rash. My parents did not know what to do about the obvious problem. They only knew something was radically wrong.

I recall one moment when I adamantly demanded that I return to NYC immediately. I was walking down their country driveway when my Mom told me she’d call the State Police if I left. I was a mere shell of the person they loved and raised so dearly. To their great credit, they quickly found help. But it was only in this warm, loving place that solace could be found –and treatment could begin.

After six months of seclusion with only core family at my side to keep me safe and well occupied, I found a low level of stability. Good treatment and being compliant with my medication regime set me on the path to recovery. But I ached for the City. I missed my lion. I still missed the people I had thought were friends.

Overcoming the self-loathing from many, many chapters of manic behavior such as this became a source of grief that could only be overcome with time.

That was 17 years ago. Despite life’s ups and downs — happiness and self-loathing, I’ve reached a healthy, happy base level.

I pride myself on having married a man who loves me dearly, and the brilliant light I’m gifted with daily from our beautiful son. I’m a productive, active member of our community, living a life I never dreamed possible.

Just recently I visited New York City for the first time since my breakthrough episode. I had been fearful of returning for the possible flashbacks lurking behind every corner. The idea of going back was immobilizing.

But on my 42nd birthday, we traveled to the top of the Empire State Building as a loving, thriving family. I then pet the lion at The Public Library and thanked him for the ride.

NYClion

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Back to School

Mental illness is, in my belief, chronic. That means we’re not out of the woods forever. The disease is in remission, and hopefully will stay that way for a long, long time. Our psychiatrist has a goal of getting his patients to a point where they can, even briefly, feel well, so that they have something to fight for, an ‘eye on the prize’, hope.

School starts on Tuesday. For the past 15 years this prospect has loomed larger than life for most of the summer, filling me with dread, anxiety and worst case scenarios. There was hope, too, but it was so guarded, locked up and protected by a thick wall of insulation that I could barely find it.

My fear and worry was well justified. Each year seemed to unravel more quickly than the previous as one or the other of my daughters’ sunk into the abyss of their illness. There was no question that as we shopped for school supplies, stood in countless lines at registration and mapped out schedules, I hoped and prayed that the year would be different. Better. Normal. That the year wouldn’t be filled with dozens of phone calls and visits to the psychiatrist; that my phone number wouldn’t the most recognized caller ID in the high school attendance office; that we wouldn’t be holding emergency IEP meetings in the first month of school . . .

So it really caught me off guard this week when I stopped to think about the upcoming school year. Oh, sure, I knew that there was a date marked on the calendar, but my thoughts have been on a very different path. Instead of lining up resources, battening down the hatches and preparing for daily battles against school refusal, we (yes, WE as in my daughter and I) have been enjoying these last days of summer vacation with no clouds over our heads. We have been talking about homecoming dresses, prom, senior pictures and . . . graduation. When asked about her classes my daughter rattles off the rather formidable list of math classes she needs to complete, with a smile on her face and calm in her voice. Once her strength, math was the first of many things to tumble when her illness ramped up and became a monster larger than life.

Why this huge change? What was the magic recipe for success? I wish I could definitively say and share it here with a lifetime guarantee. If you’ve read my blogs over the past few years, you probably know that there hasn’t been any one thing that brought strength, hope and stability. On the surface it seems that 3 months in residential treatment was the key. And it was. But I firmly believe that until we had gone through the pain, anguish, struggles and countless other interventions, that treatment could not have been so successful.

I’m not suggesting that every family has to go to hell and back in order for their child to get well, just that in our case, that’s what had to happen. In addition, there was a certain degree of maturation that also had to happen in order for our daughter to benefit from what the program had to offer. For our family, we had to hit rock bottom before we could emotionally make, and stick to, our decisions with unwavering resolve.

Mental illness is, in my belief, chronic. That means we’re not out of the woods forever. The disease is in remission, and hopefully will stay that way for a long, long time. Our psychiatrist has a goal of getting his patients to a point where they can, even briefly, feel well, so that they have something to fight for, an ‘eye on the prize’, hope. This summer has been that and more and perhaps that is why I am so calm and hopeful. I know that my daughter has had a heaping dose of ‘normal’, of enjoying life, of running into obstacles and figuring out how to go under, over or around them. So if remission fades, I am pretty darn sure that whatever it takes to get healthy again, we will waste no time in calling in the troops (her treatment team) and following whatever plan we devise.

Last night my daughter shared that her therapist had asked if she’d needed to use any of her ‘tools’ she’d learned in treatment. Her response was ‘no’, but then she hesitated.” Mom, it’s not that I haven’t used them, it’s just that I haven’t really needed to. When something stressful happens, I just remind myself to take some deep breathes, think it through, and not get freaked out.”

Hmmm, sounds to me like those ‘tools’ have become second nature. What a beautiful way to be.

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Starting Over

People whom you normally wouldn’t think to speak to can actually be going through very similar circumstances. Saying hello to someone can change his or her day dramatically…it does mine.

There were several to take now. Time of day was crucial; therefore, the plastic medication organizer from CVS became a necessity. Anti-psychotics, mood stabilizers and anti-depressants were switched in and out of those seven tiny compartments on a regular basis. Life seemed organized- but it wasn’t.

I was put on medication for the first time five years ago. I’ve tried numerous combinations of medication. My family and I refer to these combinations as a “cocktail mix.” We’ve learned that one pill won’t always work for me and because of this, I am prescribed multiple things at once to balance my moods out.

Sometimes medication combinations won’t agree with me due to bad emotional or physical side effects. It’s a scary time for everyone when we have to scramble to throw in a new medication before I make any impulsive decisions. Eventually, things begin to settle down and life moves forward. Though, the fear of me slipping again remains on everyone’s minds.

Fortunately, the past six months didn’t require much of a medication change by my psychiatrist. For those six months, I felt almost okay and feeling almost okay is a lot better than feeling almost dead.

Feeling almost okay lasted until a few weeks ago when I began to notice seeing things that weren’t really there. My short-term memory had also become affected which scared me even more. Immediately, crisis mode set in once I uttered the four words no parent wants to hear from their child- “I’m not feeling good.” As soon as these words came out of my mouth, my psychiatrist was on the phone. Great, here we go again.

Things do pass and as of today, I am in good spirits and proud to say that I am on one less medication than I was before! I’m keeping my fingers crossed and hoping that I don’t have to switch again soon.

I am not quite where I would like to be with medication. My goal is to be medication-free of course, but I know it will take more time to get there. It can be so discouraging when something you thought was working turns out not to be. I also know how it feels to carry the personal shame about having to take medication because you may feel ‘”weak” or “alone.” I want to tell you that you are NOT any of these! Having just gone through my first year of college, I met so many people who were on some sort of medication (college students and non-college students) to help their depression, anxiety, ADHD, ETC. This is so incredibly common. People whom you normally wouldn’t think to speak to can actually be going through very similar circumstances. Saying hello to someone can change his or her day dramatically…it does mine.

Until next time

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Reality Check

I take my advocacy seriously. When I was invited to blog for Bring Change 2 Mind, I decided to share my story in such a way that others living with mental health issues might glean a kernel of hope. Maybe I could inspire them to find acceptance in a world filled with prejudice and shame. I would need to be courageous when I was afraid, and outspoken when I was shy. I hoped that I could provide a fresh perspective on the subject of mental illness by being open and honest about my ups and downs. I wanted to offer the lawmakers, families, caregivers, and friends reading this blog an opportunity to see a bigger picture, one where the individual is not their diagnosis. I would need to offer data in lieu of opinion, and experience instead of conjecture.

I take my advocacy seriously. When I was invited to blog for Bring Change 2 Mind, I decided to share my story in such a way that others living with mental health issues might glean a kernel of hope. Maybe I could inspire them to find acceptance in a world filled with prejudice and shame. I would need to be courageous when I was afraid, and outspoken when I was shy.

I hoped that I could provide a fresh perspective on the subject of mental illness by being open and honest about my ups and downs. I wanted to offer the lawmakers, families, caregivers, and friends reading this blog an opportunity to see a bigger picture, one where the individual is not their diagnosis. I would need to offer data in lieu of opinion, and experience instead of conjecture.

The concerns for mental health are widespread, and the need for positive action is imperative. I have been given the opportunity to speak to two factions: the person who lives with a diagnosis, and the person who does not. Out of respect for both I choose to be transparent and authentic. To be anything less would be dishonest.

Through activism the status quo will naturally be provoked. Controversy is a logical outcome, and in many instances can be seen as a measure of effectiveness. Should a nerve be struck, all the better. It initiates conversation. Seeds of change are sewn.

Advocacy is defined as the act or process of supporting a cause. Belligerency is nowhere in the definition. The objective is more important than one’s personal agenda.

I am no more defined by the campaign than I am by my illness. One is a mission, the other is a genetic anomaly. It didn’t stop in the psychiatrist’s office or the pharmacy, the social services department or the food stamp line. Accepting this reality is key to my story. I can’t help others with my mouth taped shut.

The comfort and security of an isolated life is not the path of the advocate. To be an ambassador means taking it to the streets – no mean feat for those living with a mental illness. Considering the discrimination we are met with every day, advocacy can seem a Herculean task. We need to approach it together.

Start by supporting others to talk about their own diagnoses. Find out what their needs are, and if those needs are being met. The intention is to do our best to share our situations and concerns, but after that it’s out of our hands. Stay in integrity, speak from the heart, and then let it go.

Perhaps you’ve discovered a treatment plan that works for you. Do you hold others in contempt for not following in your footsteps, or do you acknowledge that what works for them works for them? There are many paths to wellness; likely yours is not the only one. To take the position of the bulwark is to shun a fellow traveller, thereby feeding into the stigma that ensnares us all.

When another person with a mental illness shares their story with me, I try to listen with an open mind. I look for the similarities instead of the differences; this lets us create a moment of trust. We get a chance to feel understood by someone who’s been where we’ve been. They’re familiar with the disappointments and excited by the turning points. We can share our stories of failure and success. We can encourage one another to be brave.

Professional organizers and their backers need to realize the profit of altruism over the deficit of a bottom line. Mental health providers need to see that insurance claims and head counts are not the whole picture. Media images of maniacs may drive advertising cash-flow, but at too high a price for human dignity. These incongruities are ingrained in our culture to the degree that many consider a mentally ill person to be a social pariah. Clearly, infighting has no place in a movement which purports to be for the betterment of us all.

In no way am I suggesting that we are not entitled to our individual beliefs and feelings. To the contrary – I hope that you believe in something, and I hope that you are passionate about it. What I am addressing is the component referred to as “getting along”. This is critical. Advocacy is a team effort.

We forget about ourselves for a moment when we’re helping someone else. Lending a hand could improve your self esteem. There’s a chance that whatever your diagnosis is, theirs just might be worse. From the homeless to the privileged, mental illness affects us all, and with it comes the stigma we are beholden to combat. It’s time to cash that reality check and make an investment in the future of mental wellness. Our lives will be the richer for it.

 

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Defining Stigma

Recently I had the honor of representing Bring Change 2 Mind at a press conference for philosophy’s Hope & Grace Initiative. I had been featured in a short film underscoring the realities of mental illness. The cosmetic company will be giving 1% of their proceeds to grass root organizations supporting and advocating for mental health awareness and wellness.

Recently I had the honor of representing Bring Change 2 Mind at a press conference for philosophy’s Hope & Grace Initiative. I had been featured in a short film underscoring the realities of mental illness. The cosmetic company will be giving 1% of their proceeds to grass root organizations supporting and advocating for mental health awareness and wellness.

After the video, I was called to the podium to tell my story. I also broadcast my full name, which was a huge personal achievement.  I always assumed I was obliged to hide my diagnoses for fear of judgment – and personal and professional failure.

In the moment of making my remarks, however, what struck me most was the chattering of my knees, the dancing of my feet and the tremor throughout my legs.

My voice resonated well. My diction seemed good and my pace was on mark. But from my torso to my toes, I was a mess. I’ve spoken in public a good number of times, but not about this element of my personal story. I was so surprised by my shaking that I even made light of the situation by saying “Wow — I’m really shaking”. This, as I continued to dance behind the beautifully translucent, lucite podium. Ugh.

Upon returning home from New York, I spoke with a number of friends, family and clinicians about the shaking phenomenon.  I was embarrassed, but felt this experience was less nerves and more a distinct moment in time.

After speaking with a friend who specializes in holistic healing. I learned the shaking could be a release of 17 years of negative energy. She said it was important that it took place and that this release was going to clear space for more exciting and important endeavors.

And isn’t that a good trick? As we manage our diagnoses and hopefully find an even-keeled maintenance plan, there are still snafus that remind us that while we’re not our diagnoses, our mental wellness is something that requires daily attention. Utilizing a tool from your “bag of tricks” — like removing yourself from a situation, conscious breathing, knowing when to see your therapist regarding an urgent matter or how to overcome the fear of judgment – are all key in the learning how to manage your diagnoses.

The idea of my shaking being a release of pent up energy may be a stretch, but the theory served as a salve for my self-doubt and embarrassment.

Better understanding stigma has become a profound element of my journey. I first thought of stigma as being judged for your diagnoses and/or symptoms, but now realize it’s also the self-loathing and insecurities we put on ourselves. It’s not just those without a diagnosis having poorly educated viewpoints, but those assumed opinions that we instill within ourselves as well. A small example: I shared the philosophy video throughout my circle of friends and family. Many had no idea that I had a mental health diagnoses! But I had been living under the presumption that most of my family and acquaintances were watching every nose twitch and gesture for a sign of my next fall down the slippery slope to an episode.

Despite years of doubt and self-loathing, I embrace life. I’m in love with my devoted and encouraging husband, and our son is a blessing. My friends and family are supportive and meaningful to me, and I’m happy to say I have a team of medical experts who keep me on track.

No – I’m not my diagnosis. I’m Kate, and I’m living a life I never dreamed possible.  And that’s why I’m writing, saying my full name and joining the conversation. I appreciate this opportunity to share. It’s given me a safe space to think freely.

And thanks to my holistic healing friend, I now have a beautiful new tool for my “bag of tricks”.

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Smile for the Camera

I was not born depressed. I have proof. The images of me in old photo albums show a normal, happy child. A wide grin appears on my face as I’m being passed around from my mom, to her mom, to my dad’s mom, to aunts, uncles, cousins, and close family friends. My smiles were real. I can tell. The yellowed tape that still barely adheres the pictures to the cardboard pages is a stark contrast to my bright, alert eyes and pearly-white smile. “Let’s see some teeth!” my dad, an orthodontist, used to say as he focused his camera lens and clicked away. It’s ironic that so many years later I’d be using these images as concrete evidence that I didn’t come into this world with anything close to the chronic depression I developed in adolescence.

I was not born depressed. I have proof. The images of me in old photo albums show a normal, happy child. A wide grin appears on my face as I’m being passed around from my mom, to her mom, to my dad’s mom, to aunts, uncles, cousins, and close family friends. My smiles were real. I can tell. The yellowed tape that still barely adheres the pictures to the cardboard pages is a stark contrast to my bright, alert eyes and pearly-white smile. “Let’s see some teeth!” my dad, an orthodontist, used to say as he focused his camera lens and clicked away. It’s ironic that so many years later I’d be using these images as concrete evidence that I didn’t come into this world with anything close to the chronic depression I developed in adolescence.

By the time I turned 12, everything around me appeared to be distorted. The ease and fluidity of my childhood seeped out of me like air from a balloon. The daily short walks to and from school with my friends became a hike up Everest. I began having trouble concentrating on my homework and started not caring about my grades. Somewhere between leaving my house in the morning until the time I crawled into bed at night, I faded into the background and became a reluctant observer of life, not a participant. I showed up to wherever I was supposed to be, but I wasn’t there.

An aura of sadness surrounded me at all times. I saw tragedy in strangers’ expressions – the teenage check-out girl in the supermarket, the middle-aged waitress in the diner, the greasy guy at the gas station – normal everyday people suddenly seemed like tragic figures who lived a life of desolation, just like me.

Gradually I felt completely invisible, but I didn’t think anyone around me realized it. That’s when the thoughts of making myself vanish permanently began to permeate my mind. Nothing about disappearing from the physical world seemed abnormal to my young, developing brain, and I kept that notion tucked away as an escape plan if “it” ever got to be too much to handle.

Depression is different for everyone. It can come and go quickly, or it can stay a while. When I’m in a bad way, it’s as if my mind is polluted with thick black fog. I frequently fantasize about drilling a tiny hole in the top of my skull and letting the smog spew out like a geyser, releasing all the toxic chemicals from my brain. When my depression is at a high point, I live most days with a sense of impending doom, a belief that life is going to come crashing down around me at any moment. Not believing that I deserve to be loved for any length of time – being “found out” that I’m really not worth much, and worst of all, becoming a burden to the people I love the most.

When I decided to speak openly about my illness, my disease, my disorder, there was a lot of confusion and misunderstanding. “But you HAVE so much, how can you be depressed?” is one question I’m asked frequently. It’s true – I have my own place to live, a close family and good friends, an interesting career, an education, excellent health care, an affectionate dog, and a touch of creativity. I also happen to have Major Depression. There’s nothing to sugarcoat – it totally sucks. Even with the greatest doctors and highly effective medications, there are days, sometimes weeks, in which I cannot find the speck of hope I so desperately need to see past my dark state of mind.

I made a promise to my family that I would never die by suicide. But that doesn’t mean that I don’t think about it. I do. The ugly disease of depression keeps that f-ing idea alive and it scares the hell out of me.

Suicide does not make sense. It’s a permanent solution to a temporary problem. When I heard the news a few days ago that Robin Williams died, from the exact same disease I have, I was struck with profound sadness, grief, disbelief, anguish, horror . . . I’m struggling to attach words to the emotions that have only become more acute as the hours go by.

I’m never comfortable writing about other people, especially someone I’ve never met. I did not know Mr. Williams. The closest I ever got to him in person was sitting in the audience at Radio City during one of his famous Comic Relief shows. It’s not my place to publicly speculate on what was happening to Mr. Williams in his final hours. I can’t do it. I won’t do it. All I can do is imagine the immense amount of pain he was in – the unthinkable hopelessness and despair.

Out of fear of ever going to that awful place, that filthy sub-basement without light, where I fail to see any aspect of my existence ever getting any better, I’ve devised a new plan of action with only one possible outcome – LIFE. I would advise anyone who lives with Major Depression and Anxiety to do the same for themselves. Everyone’s course of action will be different, however the result will be the same. We can’t allow stigma or shame to get in the way of staying alive. Make the call.

If you have ever smiled before, there is no reason to believe that you won’t smile again. That’s what Robin Williams did for all of us. He made us smile. That will be his legacy.

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Medication and Belly!

Yes, I have the typical “medication belly”. I’ll never forget walking into a large conference room in Akron, Ohio and seeing a crowd of consumers, all with medication bellies. I felt vindicated, understood, and a part of something that those without bellies can’t even imagine. I got tears in my eyes and, on the small stage they had set up for Glenn and me, I could only put my hand on my heart.

Yes, I have the typical “medication belly”. I’ll never forget walking into a large conference room in Akron, Ohio and seeing a crowd of consumers, all with medication bellies. I felt vindicated, understood, and a part of something that those without bellies can’t even imagine. I got tears in my eyes and, on the small stage they had set up for Glenn and me, I could only put my hand on my heart.

I know what it feels like to be forced to press on with my life in a body that does not reflect who I am. Humiliation is involved. I have had to rise above my body image when in front of an audience, (a podium helps enormously), and speak only from my heart. When I was finally able to speak to the consumer audience in Akron I yelled, “YES! You all have bellies just like me!!! And I have a belly just like you! And we are great!” Everyone in the audience yelled their agreement. It was a powerful and fun moment.

The message I got from the crowd of consumers in Akron was that they, as a group, were in charge of their mental illnesses. If you knew the humiliation involved with not only having to take medication and live with the inevitable weight gain, you would applaud those brave people.

My son, Calen Pick, gave me a good take on the weight gain and medications. He told me, “Perseverance is required no matter what.” I asked him if the weight gain has ever been so detrimental that he wanted to stop medication. He said, “No. If you think that weight gain is worse than the illness then perhaps you should ask your doctor to reconsider your diagnosis.” He also told me that from where he stood the medication has allowed him to live a pretty normal life. “My body image was such that I had a very hard time letting go. It was hard for me to except that my body had changed. That change, especially when looking in a mirror, was a humbling experience.”

I’m hoping that someday the weight gain involved with psychiatric drugs will lie in the past.

I used to be able to eat anything and stay at 125 lbs.. I didn’t used to eat too much. I was one of those women who could lose a few pounds whenever I wanted to. I think those traits have made it more difficult for me to lose weight. I have had to resort to consulting a nutritionist who will, I hope, train me in better eating habits. I tend to eat many small meals a day. That would be alright except I don’t eat the right things. And ice cream on Sundays is not working! Because I live with only dogs I gravitate to humans when I eat by watching TV. I know! I know! Bad. But I’m trying not to discourage myself.

As far as mirrors are concerned the only mirror in my house cuts off at my shoulders. Going to a hotel can be hell! Those huge bathroom mirrors tend to sap any good feelings I have about myself. But I have to keep going. I’m fortunate to have the medications that I have. I’m fortunate to be able to write and be with my children and granddaughter. I’m fortunate to be able to drive. The pluses are many more than the negatives. I’m alive.

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There are days when I want to believe that I do not live with schizophrenia, that every professional evaluation is incorrect, and every diagnosis I’ve been given is wrong. There are days when everything that happens points me in a different direction, days when my compass is affected by solar flares and witchcraft. I feel myself being pulled apart while attempting to blend in, trying not to be a burden, and doing everything I can to appear normal.

There are days when I want to believe that I do not live with schizophrenia, that every professional evaluation is incorrect, and every diagnosis I’ve been given is wrong. There are days when everything that happens points me in a different direction, days when my compass is affected by solar flares and witchcraft. I feel myself being pulled apart while attempting to blend in, trying not to be a burden, and doing everything I can to appear normal. I imitate the behaviors that I see around me, but the way I talk and walk and interact with others is a dead giveaway that something is wrong and the pros were right. These are the days that I fear the most.

I find myself believing that the stigma and discrimination associated with being mentally ill are justifiable, and that I am a person without relevance, value, or worth. I wrestle with the inequity. I struggle with the truth. Sometimes I can’t separate the two. This is the real straightjacket.

I try to remember what I’ve learned, bringing to mind every solution from years of therapy, my research data, every corner illuminated, every spider swept away. Yet somehow, even in those sparkling quarters, my soul spins forever like Dominic’s top. This is the frozen moment. This is the trap. This is the life of the mind.

Because of one mutant chromosome, my neurological system creates a pattern of belief in which I have nothing to offer, a life without meaning, useless and empty. I am invisible, even to myself. I am unseen, unheard, and unloved. I am not entitled. I am untitled.

Whatever happened to that gifted child, the eager young prodigy with a life full of promise? Where does a heightened IQ take an art school dropout when chaos is driving the bus? To washing dishes at a diner while he anxiously talks to himself? Cashiering for customers that were never really there? Counting raindrops at lightning speed before the recount starts again?

How many cardiologists will it take to confirm that his heart is robust, and that the panic attacks would be an acceptable response in the face of real fear, but are relegated to a mental disorder when there is no existing external threat? Who is going to pay for the rising cost of the hospital visits? How many people will hear him cry “Wolf!” when the Voices redact and the creeks don’t rise?

How many times will the staff psychologist implore him to reconsider that the various plots to surveil his movement, steal his thoughts, or take his life were lifted from an espionage blockbuster and never really an actual danger? How is strapping him to the bed in his better interest? Why the benzodiazepine drip? Why the paramedics? Who are these impostors?

What happened that forced his family and friends to distance themselves, when it’s clear to the doctors that his thoughts and actions are not based in a common reality, but are significant only to his fractured mind and its debilitating symptoms?

What happens when the work-up doesn’t work out, when the side effects are both daunting and damaging, when the automatic mandate that the pills should be taken for his own good is replaced with the logical concern that it’s the societal walls of disapproval that cage people in a haze of corrective medications?

Why is he considered even more of an outsider for listening to his own body, to that strong heart, to a power that built him in its own image – an image that includes false sensory experiences, the loss of a working memory, reduced executive control, disorganized speech and behavior, a limited range of emotions, and little to no insight into his state of psychosis? What deity would deign to design such a thing, and who would elect to live in this hell?

Where is the culture that speaks to equality on the issues of race, gender, and religious practice, the society that votes on humanitarian rights and the needs of the individual, where quality of life is a level playing field?

Where are the philanthropists, the altruists, the movers and shakers who pledge to put a chicken in every pot, and keep the enemy in lockdown? And why is their chosen enemy this fragile person in second hand clothes, a shaman filtering heteroclite chatter from radio ghosts, the stories of other people’s lives strained through a chemical baptism of dopamine and serotonin?

If I were only being despondent, this puzzle would grow tiresome. I would snap out of it simply because I would find it so incredibly boring to be with myself. No, these are the questions that run through my mind while I work my Houdini voodoo and listen to the straps slide off my back.

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Can People Change?

I’ve always been fascinated by people. As a child I much preferred biographies, novels about relationships, movies where emotions ran high and the characters bared their souls and spoke thoughts and feelings I never dared to own. My favorite section of the newspaper was, of course, ‘Dear Abby’. It’s no wonder that I chose a career in social work.

I’ve always been fascinated by people. As a child I much preferred biographies, novels about relationships, movies where emotions ran high and the characters bared their souls and spoke thoughts and feelings I never dared to own. My favorite section of the newspaper was, of course, ‘Dear Abby’. It’s no wonder that I chose a career in social work.

Lately, perhaps because there have been so many changes in the lives of people close to me, I’ve been intrigued by the concept that people can, or cannot, change. If you Google the question ‘Can people change?’ you’ll find pages and pages of articles, opinions and research arguing one side or the other. After reading through many of these viewpoints, I prefer to answer this question through my own experiences with my children. I’ve known them since before they were born, so have a pretty good vantage point about the ways in which they have, and haven’t changed.

I’m fairly certain I’m not the only parent who feels that their child’s personality traits were apparent within the first weeks and months of their life. Over the years, these traits have evolved and morphed a bit but they have held fairly true to those early signs.

Even as babies, there were distinct personality traits that shone through. I remember telling my parents that their granddaughter (at 8 months) was the only baby I knew that woke up with an agenda. 20 years later, the same comment holds true (except for the baby part). Another daughter was the entertainment committee for the family, always doing or saying something that had us in stitches with laughter. She didn’t have to work at it, humor and energy just oozed from her pores. Looking back through 12 years of school records, I was struck by how consistent our daughter’s behavior, learning style and mannerisms stayed from Kindergarten on.

So when I think of how people change, I differentiate between changes in behavior and changes in personality. There are phases of behavior, most notably the terrible twos and the teenage years during which we as parents can find it particularly hard to see our kids as lovable. How many times did I say, “I will always love you, but I don’t particularly like you / your behavior right now.”? What kept those ‘challenging’ moments manageable for me was that underneath those less than loveable behaviors I could still see my ‘real’ children, their nuances, quirks and familiarities that said ‘I’m still here’.

Far more difficult have been the times when depression, anxiety or bipolar disorder locked in and literally enveloped the person I have known so entirely and absolutely. There were days, weeks, even years during which I found myself completely unable to comprehend what had caused such a profound transformation. Worse yet, I felt powerless to stop the downward spiral and reverse the spell that had seemingly erased the slate of my child.

Mental illness is a lot of frightening things, the worst of which is the possibility that I might not get my child back. Unlike a toddler tantrum, a bipolar rage can go on for hours, unleashing words and actions that NO parenting book even hinted at. Unlike teen moodiness, depression can paint darkness everywhere, turning those sparkling, bright eyes into a vacuous hole. Unlike the nervous butterflies of stage fright before a school play, anxiety can strike like a bolt of lightning leaving a brittle silhouette ready to crumble at the slightest breeze.

Surely this must mean that people can and do change, controlled by illnesses that are difficult to understand and even more difficult to treat or cure. This was my worst fear during the height of the illness. There was so little hope, so little faith. My fight to help my daughters was undoubtedly even more intense (even desperately out of control) because of this gripping fear.

But, I was wrong. These changes didn’t go as deep as I thought; they didn’t erase or damage the traits that make each of my children so unique. Eventually, the illnesses were quieted, calmed, replaced by stability. I know they weren’t cured because there are still days when symptoms rev up and remind us that these illnesses are chronic. However, when the storms settled, I found all of those beautiful, cherished, sorely missed qualities bobbing among the waves, safely afloat in their lifejackets, refusing to drown.

No matter how frightening, fearful or painful the behaviors, driven by illness, hormones or environment, I firmly believe that they are just that – behaviors – and as such, they are temporary. Sure, they may be stubborn; we may hang onto them because they are self-serving, addictive, gratifying or enticing. But none of those can come close to touching the building blocks of our true selves.

This was proven to me this spring when my daughter returned home from residential treatment. The skeptic in me didn’t even know what to imagine or hope for. But as the days and weeks unfolded I saw that while there were significant changes between the girl who left and the girl who came home, in actuality my daughter had come full circle. Her behaviors had changed, and in very positive ways. Her behaviors now no longer masked those wonderful qualities that made her so unique and precious. Rather, now each trait could shine through. The real and miraculous change was the return of true self.

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Miracles

Four months is a long time to be away from expressing myself through the written word. I’ve missed sitting at my desk, in front of my computer, using a keyboard to write about living with depression. I enjoy sharing my stories to connect with others who might be struggling and hiding in the shadows with their mental illness.

Four months is a long time to be away from expressing myself through the written word. I’ve missed sitting at my desk, in front of my computer, using a keyboard to write about living with depression. I enjoy sharing my stories to connect with others who might be struggling and hiding in the shadows with their mental illness. Writing is a form of therapy for me. It helps me to manage my anxiety when I’m overwhelmed and keep my priorities in check when depression has managed to seep through every pore and infect my brain.

I’ve been off the radar because I had surgery on my spine last April. My condition is called Degenerative Disc Disease, something that I inherited from my grandmother. The physical recovery from the operation has put me in the very uncomfortable position of relying on others – technically I am completely dependent on family, friends and neighbors to do chores for me like throwing trash bags down the garbage shoot and going to the store to buy me Gatorade during a few scary bouts of dehydration.

Asking for help has always been difficult. Depression robbed me for so long from having a healthy sense of self-worth. How dare I ask for assistance when I didn’t believe I was worthy enough to receive it? From the outside, I gave the impression that I was strong and didn’t need anyone or anything. But that wasn’t the case at all – my fear of rejection and lack of confidence left me convinced I was not good enough to accept help from others.

All of this changed in an unexpected moment of complete surrender. On the day before I checked into the hospital, among the many good wishes of love and support was the popular advice to “Be Strong.” Since I was going in for a very serious operation, the kind where you’re asked your religion as you’re being wheeled into the OR, I knew I would have to exude a sense of courage right up to the minute I was put under sedation. However, it wasn’t until I was in the recovery room that being strong meant having to place all of the negative beliefs about myself aside and motion to the nurse that I needed a bedpan, immediately.

Being strong was throwing away decades of negative thoughts. I had to believe I’m worthy of help, and to receive it with grace and gratitude. Realizing I had survived the operation, my spine intact, I gained a new appreciation for my own life. I never imagined an epiphany of this scale would take place laying on a gurney, emerging from hours of anesthesia, dressed in a flimsy, untied hospital gown and debating whether to pee or not to pee. Who knew it would take all of that to convince me that I count, too.

Accepting help got me through the most arduous times in my recovery. Some days the agony was so fierce that I had to dig deep down to conjure up the strength I needed to endure. So it was with some trepidation that after being home from the hospital for eight weeks I said yes to have a day in my life documented and recorded for a cause much bigger and greater than any physical pain I’d sustained.

Reading the email on my iPhone from bed, I knew that the company philosophy and their new hope and grace initiative was something I had to participate in. The only way for me to join in was to ask for aid from the production crew. On what was the hottest day of the year, the kind and patient team said yes to everything I’d requested: breaks from shooting to rest and ice my neck; cold orange juice within reach at all times; finding a comfortable interviewing chair; allowing me to wait in their air-conditioned mini-van while they set up outside.

These may seem like small, no-brainer requests, but the old me would not have asked for any of these things. I would have suffered at my own expense – not feeling that I was worthy of being comfortable and hydrated.

It took a long week for me to recover from that grueling day. But when I saw the final product, the incredibly moving and powerful video that launched philosophy’s hope and grace initiative on July 15th, I was bursting with pride. In what is a groundbreaking commitment by any corporation, philosophy will contribute 1% of product sales on philosophy.com to the hope and grace fund, which will award multiple financial grants each year to local organizations working to empower women through the promotions, prevention and treatment of mental health and wellbeing.

The first grant will go to Bring Change 2 Mind. As someone who has been a volunteer, spokesperson and official blogger for this incredible organization for over five years, being part of this new Bring Change 2 Mind venture has been nothing short of amazing. The collaborative effort to eliminate the ugly stigma that surrounds mental illness is one of the many silver linings that have resulted from asking for support and receiving the gift of reward and recognition.

In one month, I’ll be having yet another surgery – this time on my shoulder. Again, I’ll need to rely on others for help while I recover. My friends and family need not worry that I’ll ask them for a bedpan, but coming up to my neighborhood for an iced-cappuccino and a slow walk around the block is always welcome.

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Magic and Loss

I attended my first therapy session eight years ago. The experience was markedly different from what I’d seen in the movies. All those after-school specials, prime-time sitcoms, and paranormal dramas had given me the Freudian slip.

I attended my first therapy session eight years ago. The experience was markedly different from what I’d seen in the movies. All those after-school specials, prime-time sitcoms, and paranormal dramas had given me the Freudian slip.

There was no goateed fatherly Austrian or bespectacled hippie matriarch scribbling indecipherable shorthand into a yellow legal pad. There were no Rorschach blots or Jenga blocks, no supine stretching on a leatherette couch. I spent fifty minutes in a comfortable setting with a mental health professional who let me do all the talking.

I felt welcome. I felt safe. In time I almost felt understood. I had allowed myself to allow someone else access to my private province. I knew I lived on the other side of you, I just didn’t know what to call it.

Over time and with patience, both hers and mine, I began to develop an insight into my inner world. When I finally found the courage to ask, I received my diagnosis. That hurt. I felt betrayed by my own mind, by my very life. In a word, I was devastated.

I sought the oft lauded Second Opinion. I took the psych evals. Based on tangible measurable results, it was evident that I had to practice surrender to accept the truth. I needed help, and I wasn’t willing to waste any more time. I had to learn to trust, which was difficult for me, but it worked.

Together we created the foundation for a treatment plan appropriate to my needs.

Psychotherapy feels natural to me now, a heightened version of the best of friendships. It’s like having a mind outside my own, a brain that doesn’t have my disorder, one that can guide me through the maze of everyday life that many people seem to take for granted. Most importantly, there is someone who listens.

If I want to maintain an effective relationship with my therapist – and if I want to stay healthy myself – I need to be dedicated, purposeful, and unflinchingly honest. I need to believe that she is doing the same. Our job together is to help me make sense of my symptoms, to develop new coping strategies, and to prepare me for the more challenging situations I will face. Maintenance of my mental health regimen ensures that my next break has a better available recovery rate. I say “next” because, in my particular case, various levels of instability are inevitable.

Sometimes I forget that the standards of honesty, acceptance, and trust observed in the safety of my therapist’s office are not always practiced in the Real World. Being able to speak to her without wearing the mask of shame isn’t always the two-way street that Normal People traverse. It takes a leap of faith. Without trust – that firm belief in the strength and reliability of another person – my private world can start leaking through, giving discrimination and stigma a regrettable beachhead.

Six months ago I woke up in the hospital after a failed suicide attempt. I was consumed with the idea that my life had no meaning, that I had no value. I stopped eating. I lied about it. I isolated. I lost sight of myself. My body began to fail me and I let it. The result was a trifecta of panic, trauma, and psychosis. Self-stigma held sway, and I caved. What saved me was a simple action that I learned in therapy: when things don’t make sense, tell someone.

I called my best friend. He called my therapist. They ran the emergency plan. Police, ambulance, and First Response teams came to the scene. Reaching out to a trusted person saved my life. Regrettably, it also cost me that friendship.

There is a pervasive misbelief that every person living with schizophrenia is a time bomb waiting to explode. This stereotype must have instilled some resistance to associating with me, because, since my last break, my friend has seemingly chosen not to. The loss of that relationship is indescribable, but not entirely unexpected.

Before my diagnosis I lost everything to this illness, and not by choice. Regardless of the progress I’ve made since then, stigma and discrimination continue to hold their ground in a world I want dearly to belong to, but can’t find a foothold for the fear. Not mine. Theirs.

The lesson in this is clear to me: trust implicitly those who share a mutual perspective. Open up to them. Be brave. Accept that the nature of your relationships will change. Be honest, be authentic. Stay in the conversation, and never give up. Never. Find a treatment plan that works for you and stick to it. You are worth every moment of your life. Believe that above all else.

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Hiding

Why do you think those of us who have mental illness tend to hide when we’re not feeling well? The easy answer is: stigma and misunderstanding.

Why do you think those of us who have mental illness tend to hide when we’re not feeling well? The easy answer is: stigma and misunderstanding.

The more complex answer, although the above is true, is that perhaps we are like birds. No, I’m not making fun of us, I’m just telling you that in a flock of birds, if one is sick the others will turn on it so birds go to great lengths to not appear sick even if they are. I learned this when my darling cockatiel died from a respiratory infection. She put her best face forward and it was difficult to really tell that she was sick. I only knew because she would no longer eat and she sat on her perch all puffed up. When I took her out of her cage she rallied and was as affectionate as always. I took her to an avian vet and he told me she was getting ready to die. I lost it and asked for a few minutes with her, Nils. I held her against my chest, my lips on her tiny musty smelling head and cried and cried. The vet made a clay imprint of her feet with her name in alphabet beads. I cried for days.

When I don’t feel well I don’t broadcast the fact but I also don’t lie about it. I make light of it and perhaps I should be more honest. On examination, I make light of it to people who are not mentally ill and who don’t necessarily understand how it feels to not feel mentally well. In this I am like a bird. I’m afraid of stigma. And it is stigma and misunderstanding that keep me quiet.

You might say that I’m not making sense since I speak in front of large audiences, people who are not mentally ill. I must say that speaking is very different from talking on the phone or talking to a friend one on one. When I speak to a crowd I am there to specifically talk about my journey with mental illness. I also touch on my son’s journey. I’m there to be an example of what can be done with a life burdened by living with a mental illness.

Otherwise, I’m just a person living my life, loving my kids, taking care of my doggies, going to the grocery store, paying bills and on and on and on! Mental illness tends to be cyclical so my mood, during any of the above activities, can change. As mentally ill people we have to shop for groceries no matter how we feel, we have to pay our bills no matter what. We have lives and those lives must be led. I don’t like using my mental illness as an excuse for not living life well. But it is a reason and if I’m not doing well, if my mood is not okay, I don’t need to apologize. Feeling like I have to apologize is stigma at work.

So, I will leave you with one question: Do you push yourself to rally on a bad day just so no one will know that you are suffering?

And one answer: Slam against that stigma and if you’re not feeling well because of your mental illness, just say so and fight stigma by doing so.

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Rating My Pain

In that brief moment I was reminded of how isolating and unpredictable our deepest emotions can be. Often we are afraid to think of them or acknowledge them; for fear that these emotions will grow bigger than us, swallowing us alive. We tuck them away, securing the lid tightly. Sooner or later, the lid will come loose again, or pop right off, and there it will be. Pain.

“On a scale from 1 – 10, how would you rate your pain?” As someone with a long history of chronic back pain, I’ve heard this question more times than I can remember. Often it’s accompanied by a row of comical faces ranging from bright and cheerful to downright miserable. “Which one represents you”? Until yesterday, I didn’t really give much thought to this standard measurement of physical pain. But I was connected with an old friend from elementary school who has also been dealing with back pain and wanted to know what’s worked for me. We talked at length and then he asked a question that stuck with me, catching me off guard. He said “I don’t mean to get too personal, and if you’re not comfortable sharing I understand, but can you tell me HOW your pain has impacted your life”?

As I answered his question it occurred to me that there are some big differences in how we treat physical pain vs. emotional pain. And, as I reflect on the way my friend asked that question, there are some interesting similarities.

First, the differences. In general, we are way more comfortable talking about and treating physical pain. We can empathize, relate, swap ‘war stories’ (Moms, how many of us have recounted our experiences of child birth?) and ask for help. Over the counter pain meds abound, most of us have a bottle of Tylenol, Advil or Aleve in our purse or in our medicine cabinet. Not to mention the growing controversy over the use of opiates to treat ‘severe’ pain. Aside from a fear of doctors or needles, most people won’t think twice about making an appointment for a sore elbow or knee, especially if it prevents us from participating in our favorite sport or activity.

We are sympathetic to others pain, particularly when it comes with a clear cause. “I have a head splitting migraine” (Ouch!). “She broke her shoulder in THREE places” (ouch, ouch!). “My wife was in hard labor for thirty – SEVEN hours. With triplets.” (Ouch, ouch, OUCH, legs crossed, doubled over)!!!

At the same time, we tend to be skeptical of ‘vague’ or undiagnosed pain. “She has fibromyalgia” (yeah, isn’t THAT convenient for getting out of work). “I’ve been to half a dozen doctors and no one can find a cause for my back pain” (probably shopping for pills). “He had a horrible headache and couldn’t make it to his morning classes all week.” (More likely a headache from too much partying).

When it comes to emotional pain, it seems to be much harder to talk about. Perhaps it’s because we don’t have the same language skills to describe this type of pain. Those pain charts at the doctor’s office list adjectives such as sharp, burning, shooting, stabbing, aching, throbbing, dull . . . we circle the ones that fit our situation and can generally find some combination that conveys our pain. Sometimes we are given a list of ‘what makes your pain better’ to again, circle our choices. No such charts in my therapist’s office. With intense emotional pain, I find myself so consumed, so overwhelmed, that I can’t begin to come up with the words. Sometimes I can’t even speak the words. My mouth just can’t seem to form them or they get stuck in my throat. All I can muster is ‘it hurts so much that I can barely breathe’.

Certain types of emotional pain are socially comfortable or familiar, meaning we all go through them sooner or later, or know someone who has. We have some idea of how to react, what to say, someone else takes the helm and leads us through, or at the very least, there is a Hallmark card that can give us the right words. These hurts stem from the loss of a loved one, a terminal diagnosis, a devastating catastrophe that unifies a community, a nation or occasionally, our world. But with personal pain, the stuff that comes from depression, loneliness, failure, disappointment, personal loss of hopes or dreams, the walls go up quickly and firmly.

I saw this last night with my daughter. I quickly realized that the pain had been there, lurking under the surface, maybe even doing a few push-ups to stay strong, just waiting for that moment to catch her off guard. For some reason the pain chose that instant to swoop in and take hold. I saw it in her face, her demeanor, her stance. Gently, I asked her what was going on. For a few minutes she opened up a crack, let me hold her, hug her, listen to her words as they came up between punctuated sobs. My own pain loomed as I realized that there really wasn’t anything that I could do to make it better. She was mourning the loss of what might have been, what should have been, the years of her childhood that were dominated by illness. My only option was to just be there, trying to use that long hug as a conduit to send through my love and warmth. And then, all too quickly, the moment was gone. The wall went up, the pain shoved down, hopefully a little less than before, but surely still there.

In that brief moment I was reminded of how isolating and unpredictable our deepest emotions can be. Often we are afraid to think of them or acknowledge them; for fear that these emotions will grow bigger than us, swallowing us alive. We tuck them away, securing the lid tightly. Sooner or later, the lid will come loose again, or pop right off, and there it will be. Pain.

For me, and from what I’ve seen in my girls, that fear of overwhelming pain is what keeps us holding on to it tightly. After all, sharing emotional pain means sharing some of our most vulnerable thoughts, experiences and feelings. Not something we’re likely to put on Facebook or sent out on Twitter. How do you even put those all-consuming feelings into 140 characters??!! It’s not easy to find someone in our social circle who can relate to, and understand, our circumstances. But ironically, talking about our pain, or just allowing ourselves to cry, scream, collapse into a puddle, can be some of the most effective ways of lessening and defusing the intensity until time can work its magic.

When my friend asked me that question: “I don’t mean to get too personal, and if you’re not comfortable sharing I understand, but can you tell me HOW your pain has impacted your life” he said something beautiful. He made the connection between physical and emotional pain. He recognized that my chronic pain had an emotional side to it, one that crosses into that private, personal, confidential area. Maybe, these two types of pain aren’t quite so different after all. Maybe, just maybe, we can respond to all pain in a way that will encourage us to let it out to dilute and dissipate rather than intensify and build inside of us.

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 12 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci has three daughters ages 17, 19 and 21.  The oldest and youngest were diagnosed with mood disorders at ages 9 and 10 respectively.

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Crazy

Be authentic. Show the world your real face. Be willing to speak from your heart so that others can better understand your disorder or condition, thereby distinguishing the myth from the person in front of them. You will likely see what I see: that with faith in one another we are not alone, and that together we can end the stigma and discrimination that we experience every day. We can live without shame or ridicule, from without or within. We have a right to be treated as human beings, not monsters or rejects.

Around the bend, attention seeker, bananas, basket case, batty, bonkers. Brain damaged, brain dead, brainsick, certifiable. Cracked, crackers, cray- cray, crazy. Crazy-pants, cuckoo, daft, defective. Demented, deranged, derpy, ding-a-ling. Dribbling, drugged-up, feeble-minded, freak. Frenzied, fruitcake. Gaga, gonzo. Goober, halfwit, hand fed, head case. Idiot, imbecile, loco, loopy. Lunatic, maniac, mental case, moron. Nut job, nutso, nutter. Off their meds, off their rocker, out of their mind, over the edge. Paranoid, postal, psycho, reject. Schizo. Schizoid. Schizophrenic. Sick-o, simpleton, sociopath, spaz. Straightjacket, twisted, unbalanced, unhinged. Wacko, whack-job, window licker. Wrong.

You just read sixty-eight derogatory terms used in everyday speech to describe a person living with a mental illness. Sixty-eight. And that barely scratches the surface. I trimmed the list down from over two-hundred. Words so commonplace that we don’t give them a second thought. Every time I hear them spoken, or read them in print, I cringe – and you should, too.

These words are ingrained in our culture and used at the expense of people who are struggling to deal with conditions largely misunderstood. Consider the parents, therapists, teachers, and friends fed up with listening to their children, clients, students, and mates seemingly testing reality with erratic behaviors. Fed. Up. And why not? That’s reason enough to blow off some steam, right? They should be allowed a little rudeness every now and then, wouldn’t you agree? After all, they’re at their wits end. They deserve a break. It’s exhausting dealing with a mentally ill person.

Really? Seriously? Think about that.

How are they justified in responding with dismissal and condescension? Are they excused for using these terms because of their standing as a parent, a professional, an educator, or a friend? In other circles, when pejorative terms are used, our culture has a word for that, a legal term, one that can force a person to lose their job, even spend time incarcerated. We call it bullying. It’s not limited to the playground.

Did it strike you as odd that the word “schizophrenia” was included in that list? When I was doing my research, I found no other clinical diagnosis included among the most common slurs. Only one of the myriad of possible existing conditions is singled out and indicated as “defining” mental illness. Is it any wonder then, that our educational system may hold and/or promote the singularly misguided belief that any individual living with a mental illness is a potential “schizophrenic”? Through fear and misjudgment it is errantly assumed that that person is prone to violence. Convenient when the press needs a scapegoat.

Consider how it feels to grow up in a society where you are taught, along with your peers, that you are the enemy. One could posit that self-stigma is entrained into the mentally ill student by the very culture that teaches them to expect to be thrown under the bus because of it.

I was asked recently why, as an advocate, I would use the term “mentally ill”. My answer is simple: this is the terminology of the day, and as awareness evolves, so will the term. Advocates speak in the language of their people; they don’t succumb to name-calling and ridicule. Having a mental illness does not make you an immediate target for intolerance, regardless of what anyone might think. Theirs is contempt prior to investigation. So introduce yourself.

I have schizophrenia – a chronic and debilitating disorder of the brain. I have done my research. I continue to learn. Science has proof that schizophrenia is the result of a chromosomal anomaly. It is not the result of poor parenting, or diets too rich in copper, or errant social programming, or demonic possession. Only one percent of the world’s population share this rare mutation.

I have surrendered to the facts of my diagnosis: that I will not always be able to tell the difference between what is real and what is not. That my thinking will be regularly clouded or confused. That my emotional responses will often be amplified or inappropriate or both or missing. Social situations will confound me. I will be alone and misunderstood because I can’t understand why I’m alone and misunderstood. It is not a romantic life. But it’s mine.

Be authentic. Show the world your real face. Be willing to speak from your heart so that others can better understand your disorder or condition, thereby distinguishing the myth from the person in front of them. You will likely see what I see: that with faith in one another we are not alone, and that together we can end the stigma and discrimination that we experience every day. We can live without shame or ridicule, from without or within. We have a right to be treated as human beings, not monsters or rejects. We have the right to proper health care, to friendship, and respect.

The next time someone hurts you with words, remember this: “normal” is just a setting on the dryer.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Montana Rain

I wouldn’t want to be independent of friends and family. Independence calls for taking care of ourselves. I know what it is to be devoid of humor, to feel crappy and want to isolate. Sometimes it’s inevitable but at other times just reaching out to a friend is the best thing we can do for ourselves. Have a great 4th and laugh!

This rain is getting monotonous. The creek outside my back door is so full and running so hard that it’s white water. I’m happy for the idea of rain, the probability that we could very well have a lower than normal fire season but my lawn grass is now about three feet tall. The weeds are more like four to five feet tall. I need goats! I have a neighbor who said she’d be happy to bring two goats over but I’m afraid I’ve been isolating and haven’t persisted in calling her. I called once but she didn’t answer and I haven’t persisted; I was happy she didn’t answer because if she had answered I would have had to see her and speak to her if she brought her goats. She’s a very nice woman and I’m not hiding from her, per se, I’m simply hiding from everyone.

There are a few things I like about isolating. I can be invisible. I can talk on the phone and seem okay. I have one friend, however, whom I can’t trick. She lives in NYC and we keep track of each other. We share the affliction of bipolar disorder. She can always hear it in my voice when I’m not doing well. If you have a mental illness it’s so valuable to have a friend who can make you laugh and allow you to see just how isolated you have become.

Every Spring I descend into not necessarily a black mood but a mood that shuts everything else out. Everything but the mood. I feel colorless, boring, locked inside myself, incapable of opening up to even family and friends. Texting saves me.  I have another friend  who I text with on a daily basis and she makes me laugh. In fact last night I was laughing so hard I had tears in my eyes. So why doesn’t my mood go away!! It flees when I laugh but creeps back when I’m not communicating with a friend.

I did drive into town yesterday as I had run out of food. My four doggies were very grateful to be out and about. They stuck their heads out my truck windows and soaked up the breeze and sunshine. They made me smile. Sunshine. How incredibly important it is to all of us. My Rat Terrier is allowed to bark at only one dog along the way and miraculously, he sticks to that. He’s a rescue dog and used to bark constantly when in my truck; non-stop barking is incredibly annoying. So, I praised him when he was quiet and allowed him to bark at the one dog on our way into town and it worked. Amazing and funny!

I bought a pair of TOM’S shoes a few weeks ago. These are red, white and blue with the stars and stripes. I love them and feel a part of the upcoming Independence Day holiday.  I don’t know why I love the 4th of July because my dogs run and hide at the noise of firecrackers, I dislike crowds and unless I have another person with me I stay away from the local rodeo which is really fun.

The problem with isolating is that if you allow yourself to isolate rather than be with friends then your friends tend to stop calling. Not good. Not great for mental health either.  I have one friend who is funny and makes me laugh. I make her laugh too and her laugh is so infectious that I keep on laughing with her. I wouldn’t want to be independent of friends and family. Independence calls for taking care of ourselves. I know what it is to be devoid of humor, to feel crappy and want to isolate. Sometimes it’s inevitable but at other times just reaching out to a friend is the best thing we can do for ourselves. Have a great 4th and laugh!

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The Numbers Game

So if my teenager needs to take a year or two to catch up, to truly live and feel, then please don’t try to put her star shape into a square hole. Don’t ask her the ‘standard’ questions about a prefab future. Try asking about her here and now or her dreams. Or better yet, let her ask the questions.

This is a week of birthdays in my family of origin. My dad turned 88 on Saturday, and on Friday I turn 55. I’m not a numerologist, but perhaps there is some magical significance about our ages since they are both multiples of 11.

More than numerical coincidences, our birthdays have led me to think more about the impact that these numbers do or don’t have on attitudes and perceptions – ours and others. For my dad, being 88 opens all sorts of doors and opportunities. As he says “If I forget something, I simply explain it away by being an octogenarian”.  And who can blame him? People are impressed by that number, especially when they look at my dad and talk with him. He hardly has the appearance or mind of someone who is almost 90.

My middle age status brings a broader set of assumptions about where I am in my career path, my parenting responsibilities, my children’s’ accomplishments, and more and more frequently, what will the next 10 years hold as I head towards (gasp) retirement. The ones that really get me are the questions about my children, and the expectations of what they should be doing, all based on . . . of course . . . their age.

This was a topic of discussion recently with some friends, particularly the pressure that is put on many teens and young adults. Age 16 – start thinking about career path, taking the right classes, studying for SAT’s or ACT’s, part time jobs to gain experience.  Age 17 – college visits or charting a vocational path, taking ACT’s and SAT’s, preparing resumes,  agonizing over scores because someone ALWAYS has a higher one, getting that GPA up before applying to schools. 18 – Graduate from high school and head off to meet the world full speed ahead.

Unlike a 55 year old, there isn’t a lot of wiggle room to slow things down or try out a few different paths to see what’s really right. And how many teens honestly know exactly what they want to do, where they want to go, or even what options are available? If we’re still learning, figuring out what to do with the rest of our lives, experiencing successes and failures, then why do we expect someone 1/3rd our age to have things all sorted out?

All of these scenarios assume that teens have had a pretty ‘normal’ existence growing up. But what if there has been a chronic illness – Lupus, PTSD, Crohn’s Disease, Major Depressive Disorder or OCD – that resulted in numerous absences from school, social life, summer jobs or volunteering? Now you have a teen whose developmental path has been derailed academically, emotionally, socially and who probably feels a bit more self-doubt and insecurity than other teens.  How do they (or their parents) feel when asked “What grade are you in?” followed by “Oh, so you must be busy with those college visits and essays, how are they going”?

What’s the right thing to do? Push like heck to ‘catch up’ by creating one modification and accommodation after another to get every teen through to high school graduation and on that road to success? How DO we create a catch up scenario that can effectively reproduce several years’ worth of missed junior high cliques, research projects, clubs, babysitting, lawn mowing, Drivers Ed, best friends, worst friends, disappointments and successes?

For our family (and we are by no means representative of other families), the answer is “We slow things down”. Sure, our school district may be able to create a condensed curriculum that will allow our daughter to earn all of the credits she needs to graduate on our societal time line. But that will not come close to filling in the 5+ years of gaps in all of those other areas which don’t fall into the Department of Public Instruction’s graduation requirements. I could be wrong, but knowing my daughter, her strengths, her interests, the skills she has gained from her illness and the skills she has yet to gain because of her illness, some strong advocacy is needed before she walks across the stage to receive her diploma.

First, my daughter needs to be a part of the advocacy. This is a skill that every person should develop before they launch so that they can walk into a job interview with confidence, greet their new dorm roommate with a smile and a welcoming word or approach a boss or a teacher for clarification rather than risk being tripped up by a misunderstanding. My daughter needs to be an active part of the discussions with her teachers to explain the gaps that were uniquely created by her illness.

Second, we need to build a plan for success. Rather than just mapping out a schedule to get through 4 electives, 3 math classes, Government and Economics, we need to consider past triggers as well as tools that were helpful. This means looking not just at course content but at processes and skill sets. Things like note taking, analytical thinking, time management and research aren’t necessarily blended into every course. But these are all critical tools for the future.

Lastly, and this took me a while to recognize and then come to terms with, my daughter needs to recapture some of those years she missed. So many years were dominated by illness, hospitalizations, residential treatment and inertia. Before my daughter can fully be a 16, 17 or 18 year old, she needs a chance to be a 12, 13, 14 and 15 year old. Not a year at a time, but she does need a chance to developmentally work through those ages to enjoy and experience what each has to offer. For a child who so often couldn’t ask for or give hugs, who couldn’t express emotions of gratitude, appreciation, joy or love, being able to do and feel these simple things is a priceless gift. She needs to trust, feel safe, take risks and know that people are there to catch her if she stumbles.

So if my teenager needs to take a year or two to catch up, to truly live and feel, then please don’t try to put her star shape into a square hole. Don’t ask her the ‘standard’ questions about a prefab future. Try asking about her here and now or her dreams. Or better yet, let her ask the questions.

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 12 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci has three daughters ages 17, 19 and 21.  The oldest and youngest were diagnosed with mood disorders at ages 9 and 10 respectively.

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Pinwheel

My objective is to share my experience, strength, and hope, by asking you to spend a few moments in my shoes. We can create a conversation where silence might have been. Misinformation fuels the stigma and discrimination that every person living with a mental illness feels daily, doing little to address the more significant challenges at hand: affordable health care, cultural inclusion, solvency, acceptance, and authentic, respectful support.

It’s a party, but none of the guests are familiar. They ignore you, which is fine, because this is an experiment.

Stand still. Don’t mingle. Close your eyes and listen. Listen to their conversations, the chitchat, small talk, pickup lines, and gossip. People sharing their day-to-day experiences. Communication. It sets us apart from the furniture.

Remain silent. Don’t respond. Pay close attention to every word, every nuance of every word, every inflection, accent, and social cue. Was that laughter? Is someone flirting? Are you attempting to associate what you think you know with what you know you’re hearing? Was that empathy or censure? Did a tongue bubble up from the cotton-batting patter and pique your attention? Was it directed at you or at someone else? You’re minding your own business, keeping to yourself. What did you do to deserve criticism? And why are you rattled?

Stay calm. Step outside. Get some air.

Open your eyes, but don’t turn around. Let the breeze and the night air soothe your nerves. Watch the skyline. Focus on your heartbeat. Let’s continue this experiment somewhere else. Some place bigger, less claustrophobic. The train depot. You’ll be anonymous there.

Imagine that you are a secret agent. Your skill set makes you irreplaceable. You have information that is highly valued. Your adversaries will stop at nothing to acquire that data. This is the danger of espionage, but you have never been uncloaked, never disclosed your sub rosa intel. So why does the depot make you uneasy? Could it be that these bystanders are not here to board the train? Have they instead assembled for some nefarious purpose? Are they carrying technology which enables them to intercept your thoughts? Can they replace those thoughts with forgeries? Leave now, before you risk the mission. Return home. It’s safer there.

All that excitement has made you hungry. Let’s continue the experiment.

Sit in your favorite chair. Look at your watch. Are you still hungry? Had you forgotten? Imagine now that you are your chair; you have no frame of reference for hunger. What does it mean to be hungry? Was there a memory of an answer? What was it? Food? Best perhaps not to follow this line of questioning. You are a chair, after all, and furniture does not wont for nourishment. You are redundant. The floor would suffice. This is existence, not life. Life is made of variables too numerous to calculate. You are an object, not an object lesson.

Despair, or do not. There is no choice.

Bring to mind your best friend, how you grew up together and shared every dream. Times are different, you’re older now, but when you meet them, they look the same. Not in the colloquial sense, nor the yearbook cliché of Dorian High. No, they are exactly the same: their clothes, their hair, their age and size, forever frozen, enduring, unchanged. Your therapist tells you your friend is not real. In time that friend may say farewell, another one might take their place. Is this evocation, or treading a slipstream? Are you attempting to associate what you know you’re thinking with what you think you know?

Our experiment is almost complete.

Picture each scenario as a three dimensional film, projected on separate plate glass screens: the party, the depot, the chair, and the friend. Stack each plate on top of the other. Concentrate. Each diegesis works on its own, but fused and compacted all context is lost. Any attempt to discern a cohesive thread results in confusion. Chaos emboldened. A chimera.

This is what it is to open the mind.

I have offered, in narrative form, oversimplified examples of a few individual components of the symptomology of schizophrenia: hallucination, anxiety, paranoia, avolition, dissociation, depression, and delusion. In asking you to consider them as one molten concept, I have presented a working notion of psychosis within the framework of this debilitating thought disorder.

My objective is to share my experience, strength, and hope, by asking you to spend a few moments in my shoes. We can create a conversation where silence might have been. Misinformation fuels the stigma and discrimination that every person living with a mental illness feels daily, doing little to address the more significant challenges at hand: affordable health care, cultural inclusion, solvency, acceptance, and authentic, respectful support.

Tabloids are driven by drama. Drama is driven by conflict. Conflict requires resolution. Resolution delivers on promise. Promise is based on assurance. Assurance is born of ability. Abilities are gained through experience. Experience is acquired through knowledge. Knowledge affords understanding. Understandings are formed through agreement. Agreement leads to harmony. Harmony ensures wholeness. To be whole is to be one – unbroken, undamaged, healthy.

Don’t remain silent. Don’t stand still. Share those day-to-day experiences. Respond and mingle. It’s a party, and every one of the guests are welcome. Especially you.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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It’s Raining!!

Sitting here in my living room now, with my four doggies on the couch with me, I am happy to say that my mood is steady even though it’s raining. I’m not particularly happy about grey light and chill air but I can take advantage of it and roll it into a cozy afternoon. It was only a week ago that I was sliding into depression; the sky was grey then too. What makes the difference between getting depressed and not getting depressed?

I remember a summer when it rained every day. My daughter, now 22, was in a crib so this rainy summer must have been around 20 years ago. My sons were young-ish also, probably 12 and almost 14, somewhere in those horrid ages before they become your friend and way after they’re warm and cuddly.

I was pretty manic back then and, of course, depressed when the tables turned. I also had migraines that glued me to my bed three days at a time. But, even so, we did have fun when the sun came out between bouts of rain, especially if I was migraine free and steady or even manic. And I dare say they had fun without me.

Now, I can actually get bored. It’s a rare moment when I have too much to do. It’s those times, when I’m feeling guilty about not being very productive, that I look back and remember that I’ve paid my dues. Living most of my life without medication or even knowledge of bipolar disorder, there are plenty of nightmares I can conjure up. But, my memories are not all gruesome. We had some wonderful times together. And other times when I felt lonely being the only parent and disciplinarian in my house.

I remember the two boys spiking their tiny sister on the family trampoline and putting a stop to that. I remember the boys fighting, punching and kicking and putting a stop to that. I remember so many situations with my three kids that I felt completely unprepared for. I remember hearing blood curdling screams from my daughter and discovering that her brothers had hung her favorite doll up on the wall out of her reach and putting a stop to that. I recall all the 11pm laundry sessions, the dinners day after day until I resorted to making orange dinners (mac and cheese with carrots and breaded chicken) or brown dinners (baked potatoes with salisbury steak), so many dinners that now I rarely cook anymore. If you’re into it, try making a blue dinner – quite difficult. The bottom line is that life with children is busy and challenging and seemingly never ending. Until it ends. Until the last child is out of the house. And then it’s quiet, too quiet sometimes.

Sitting here in my living room now, with my four doggies on the couch with me, I am happy to say that my mood is steady even though it’s raining. I’m not particularly happy about grey light and chill air but I can take advantage of it and roll it into a cozy afternoon.  It was only a week ago that I was sliding into depression; the sky was grey then too. What makes the difference between getting depressed and not getting depressed? Perhaps the number of grey days in a row has something to do with it. It was sunny yesterday. Perhaps a brain dictated by moods can actually save up sunny days. I don’t know. I do know that if it’s wet and chilly I lose a certain skip in my stride.

During this writing it’s been gloomy, rainy, sunny and back to gloomy. Uhg. If my children and I were still 20 years younger who knows what we would have done today. I could have been a screaming meanie or we could have all been on the couch together, talking and laughing, or we could be playing Clue at the dining room table. All I can say is: Go kiss your children, now, and save the memory of that kiss for a rainy day.

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Letting Go - Part Three

So it’s no wonder that when the topic of discharge planning came up during my daughter’s time in residential treatment, we all struggled. Tremendously. I struggled because I was still in protective mom mode, assuming that I needed to parent the way I had in the past. My daughter struggled because she was feeling stronger, more capable, more trusting of her stability, her skills and herself.

It’s one thing to let go and trust others who are trained professionals, experienced parents, loving family members. But letting go and trusting one’s own child . . . well, that pushes this trust thing to a whole new level – particularly when mental illness is involved.

So many of my years as a mom were spent in crisis mode, managing one setback or flare up after another. At times my kids were too sick to make even the simplest of decisions on their own. When they were younger, it wasn’t such a stretch to step in and do things, that’s what mom’s do for their little ones. As they got older, when depression, anxiety or mania locked in, of course I was going to make the calls to the doctors, manage their medications, decide when to push for them to go to school and when to call them in absent. During those times of crisis I HAD to be in control most or all of the time. It was a matter of safety and survival – for all of us.

When I came to terms with letting go while my daughter was in treatment, in many ways I was simply transferring control. In hindsight I realize that even that action was an act of control. I made the decision to put others in charge. So I really didn’t work through the idea of passing control back to my daughter. In fact, the possibility barely occurred to me. Sure, I knew that my job as a parent was to slowly and consistently loosen the apron strings and allow each of my daughters chart their own course. I KNEW that I had to teach them to become advocates for themselves, to do all of the basic things that independent young adults need to do like manage a budget, shop for groceries, do laundry, and be accountable and responsible. But when mental illness derailed the natural progression of that learning process, I got stuck.

In my own defense, it’s hard to think about tasks so seemingly simple and mundane when each day is a battle of survival, literally wondering whether I will find my daughter alive or not when I walk into her room. Most days were shadowed with the debate of whether we should push for hospitalization, knowing the struggles and limitations involved because of an upside down and broken system, or white knuckle it through another day at home. So the thought of my daughter as a stable young woman, capable of deciding her future was beyond my wildest dreams, beyond what I dared to hope.

So it’s no wonder that when the topic of discharge planning came up during my daughter’s time in residential treatment, we all struggled. Tremendously. I struggled because I was still in protective mom mode, assuming that I needed to parent the way I had in the past. My daughter struggled because she was feeling stronger, more capable, more trusting of her stability, her skills and herself. She struggled because she saw me still stubbornly locked into ‘I know what’s best’ mentality and she feared going back into that environment. She desperately wanted to convince me that she’d changed. I desperately wanted to believe her but the past left me skeptical, cynical and fearful beyond words. I was exhausted emotionally and physically, unable to envision anything better because I was terrified of disappointment, or worse. It’s no wonder that the professionals struggled because they saw the potential for conflict and knew that coming home could be a recipe for failure unless something changed. And that something was my thinking.

I wish I could say that I miraculously figured this out and the homecoming was filled with butterflies and rainbows. But if that were the case, I probably wouldn’t be writing this blog. The reality was that I went into full blown control mode, with a sense of urgency that bordered on mania. My motives were only the best, but oh did I have blinders on, convincing everyone in my path that my way was THE way. I lined up an education consultant and frantically went to work to find the best ‘step down’ program to keep my daughter safely on the road of recovery. I’ll spare you the details but I worked myself into an exhausted, panicked mess and probably annoyed more than a few people along the way (I’ve since made my apologies and mended a few fences).

It shouldn’t have been a surprise that my heavy handed, urgent approach was not met with open arms by my daughter. What she saw and heard was ‘Mom doesn’t trust me. Mom doesn’t have any idea of how far I’ve come and how hard I’ve worked to get healthy and to manage my illness. Mom still wants/needs to manage my illness and she’s using last year’s instruction manual’! The result was sheer panic and anxiety which I of course interpreted as ‘see, I was right, she’s not ready to come home’.

What my daughter may or may not have heard, and I certainly did not at the time was ‘Mom is scared to death’! I was terrified that I couldn’t handle my child being ill again/still. I let my fears run rampant, stifling out any chance for emotions like ‘hope, faith, trust, joy’ to creep in.

Thankfully, some people who were more objective, experienced and less emotionally invested did hear all of these unspoken thoughts. And they steered us to a compromise, a Plan B, which allowed us each to transition into our new roles and develop a new relationship. I took a leap of faith that maybe, just maybe, success could be a part of our lives. My daughter took a huge leap of faith in trusting herself and in trusting that maybe, just maybe, Mom would lighten up when she saw some of the miraculous changes that have occurred.

The questions I’ve learned to ask are ‘What’s my motivation’ and ‘what are my fears’? These two simple questions generally guide me back to what’s actually driving my actions and help to get me back on course. Often I need to talk through my answers with a trusted friend or therapist. But at least I’m stopping to contemplate rather than blindly charging ahead.

We keep ‘Plan B’ on the back burner, and it sits there, joyfully gathering dust. We both hope we’ll never need it and I rarely think about it now. But it gives us peace of mind knowing that in the (unlikely) event that there is a crisis, we won’t be left scrambling, that the safety net will catch us and keep all of our hard work from crumbling.
Letting go is still a learning process for me, but there are so many miracles of positive reinforcement I am a grateful and willing student.

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 12 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci has three daughters ages 17, 19 and 21.  The oldest and youngest were diagnosed with mood disorders at ages 9 and 10 respectively.

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Back to the Music

We all have certain songs that can bring back good memories. Others songs remind us of difficult or sad times, so we avoid them. I know I do. Or we just enjoy a song as we listen; it makes us feel good.

Music – most of us enjoy it in some form. Whether you sing, write, play an instrument, attend a concert, or simply enjoy listening. For me, music played an important role in my recovery from depression. I was diagnosed on March 7th, 2003. Four days later, I had a mental break down; as I describe it.  Some fragments of my mind functioned, some didn’t. As a result, I would spend a few months in bed and two years confined to the house, but for therapy.

Eventually, I gained the confidence to act on a desire to drive around the city in the evenings when the streets were quiet. There was a new Van Morrison song at the time and I would play it on my drives – “Back on Top”.  I was so far from experiencing the feelings Morrison was celebrating in the song, but it gave me hope; something for which to strive. I can play that same song now and be thankful that in terms of my health and lifestyle, I am ‘back on top’.  It only took 12 years.

As my recovery progressed, I found I was able to go to Bearly’s House of Blues pub in Halifax to see Dutchie Mason perform. I often saw him during my university days but had lost touch with music due to my depression. He wasn’t well, with arthritis taking a toll, and perhaps his lifestyle catching up. He would simply sit and sing the blues – the Prime Minister of the Blues still had it though. I stood in the back, enjoying great blues and appreciating the fact that I could be there at all.

Recently, I realized that I haven’t played any jazz in all these years. This particularly struck me as I have always been a huge Miles Davis fan. I was fortunate to see him perform live many years ago. Knowing I was a fan, some friends took me to see Miles for my birthday. I enjoyed it, they didn’t. So when he returned 6 months later, I had clued in…I bought one ticket. There I was, just four rows between me and Miles – one of my best nights. And so, Miles wasn’t played in my house until a few weeks ago. I’m not sure as to the reason; perhaps because his music takes me to such deep and personal places. Places I maybe have not been ready to venture – until now. I played Kind of Blue. It is considered to be one of the top 5 albums of all time, regardless of genre. I let the music take me away and then bring me back; quite a moment.

In the years following my recovery I began to share my story. I now present on my journey through depression at national conferences and local events. After being invited to present to an annual corporate meeting last year, I found myself wanting to change the nature of my speech. Something was missing. I discussed some of my ideas with a friend, Collette. Based on what she heard from me, she suggested I frame my presentation around the lyrics of Rolling Stones songs. Suddenly, my recovery had a soundtrack. I was now able to weave into my story one of the constants in my life, through the good and the bad – The Stones. Collette helped me put together a PowerPoint and my presentation was very well received. Since then, I have started bringing music into many of my presentations; with a focus on the role music has played in my recovery and now in my wellness.

Recently, I have had a run of presentations with nine in just twelve weeks. With each one, I have chosen to incorporate more material on music in my life, and audiences are responding quite well. I suggest it is because music has such an impact on almost everyone. We all have certain songs that can bring back good memories. Others songs remind us of difficult or sad times, so we avoid them. I know I do. Or we just enjoy a song as we listen; it makes us feel good. I also think including music in a presentation about one’s journey with mental illness can allow an audience to understand the journey on a deeper level. People are able to understand and identify with music. Music can make a personal connection. Music has a power, and almost all of us feel the pull.

Keith Anderson is a lawyer and mental health advocate. He has been a Bring Change 2 Mind volunteer since December, 2009.  He has had articles on his journey through depression appear in the National Post newspaper and  publications of the Canadian Bar Association and the American Bar Association. Keith has presented at national conferences and at local events in his native Canada. He sees stigma that is too often inflicted on so many people with mental illness as a form of discrimination, a human rights issue. Keith continues to return to a life worth living by still experiencing new things, such as recently eating sushi for the first time and enjoying it!

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Oranges

If you care for a person with a mental illness, how can you help? Begin by listening without judgement, as you would to anyone else. Refrain from attempting to correct the convergence of ideas that their neural pathways create. Just listen. Is there an urgency to the message? You can sense that. Are they showing an emotion you can recognize, despite the nature of the words, the cadence of their speech? Listen actively, without reason. Bring your shared history with you. Bring love.

In 1964, Professor Harold Edgerton published a photograph entitled “.30 Bullet Piercing an Apple,” an example of high-speed photography captured through the technology of his innovative Rapatronic camera. Dr. Edgerton developed the device in the 1940s, overcoming the limitations of conventional photography by capturing, through the implementation of the stroboscope, images unseeable with the naked eye. His photos, measured in milliseconds, give the impression that time has stopped.

My friend Carl is a carpenter and a poet. He built his home out of lumber hewn from trees felled to clear the site, a cabin in the woods among the Bambis and the brambles. If a tree falls in the forest, I can hear it in the creak of the door and the groan of the stairs. Together we sit on the deck, breathe in the ocean air, and let our thoughts be swept away by a high tide whispering the song of its people.

Carl attends daily to the needs of his wife, a person living with epilepsy. Theirs is a meditation on assistance and grace, blessed with gentle routines that help keep her body’s electrical surges at bay. He recently asked me how he could help, should I drop into an event of delusion or worse. I offered the answer I’ve shared with others: don’t make me wrong for my reality, and be accountable for your own. It can have the effect of giving me pause to consider alternatives to fear.

Accountability is not permission to blame or a consent to assign guilt. To be accountable is to be in the act of giving credit, an obligation to one’s self to stay involved in the process of trust, to ebb and flow according to the dictates of the moment. It is a personal system of checks and balances. For the rational mind, this is the basis for independent decision-making.

Schizophrenia ignores this construct. Thought is a renegade maelstrom caught in the stroboscopic synapse between apple and bullet. The disorganized mind experiences this as interpenetration, a merging of the fibers and strands of concept and experience. One idea encompasses every other, and every other encompasses that one idea.

For seven months I slept on the floor because I believed that sleeping in my bed would be tantamount to breaking my teeth. A friend came over and bounced on my mattress, laughing “Look, my teeth are fine.” I recoiled uneasy, convinced that he was testing fate. I continued to sleep in the hallway. The floor was safe.

As the bullet passes through the apple, bloom and juice coat the edges of its casing and it emerges modified, moist and sticky. The apple is no longer an integrated object, its sweet pulp seared and rent by lead. Collision, displacement, recombination – that mysterious moment when two things become one.

The ordinary brain compartmentalizes every nuance of thought within its grasp, and society marches along in concert with the shared experience of what it finds in that seamlessly organized harmony of awareness contained. You have a bullet, an apple, a camera, and a moment. I have Brundlefly.

If you care for a person with a mental illness, how can you help? Begin by listening without judgement, as you would to anyone else. Refrain from attempting to correct the convergence of ideas that their neural pathways create. Just listen. Is there an urgency to the message? You can sense that. Are they showing an emotion you can recognize, despite the nature of the words, the cadence of their speech? Listen actively, without reason. Bring your shared history with you. Bring love.

Be accountable for your own reality, and allow them theirs. Refrain from needless argument. Your loved one’s personal experience is as true to them as yours is to you. Perception is in the mind, and if that mind is caught in the Rapatronic snapshot of its disordered process, respect is key. Compassion unlocks. Patience rewards.

In those moments when I need help, I am the bullet and the gun. I am the apple anchored to a steel rod. The displaced matter, the residue, the photo, and the camera, are all objects coexisting as one idea: me.
The words “illness” and “sickness” imply a condition subject to convalescence, words best used when describing a bout of the flu, but grossly inadequate for illustrating the workings of the mind. Our culture has co-opted their use to accept the incomprehensible. This is not to say that listening to a person wrestle with their own mind is not frustrating. I acknowledge that it can be; the proof is in my loneliness.

Overcome the limitations of conventional thinking by nurturing, through the implementation of person-first language, lives unknowable with the naked eye. Your actions, measured in a heartbeat, might secure the hope that change is coming.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Letting Go – Part Two

So, in the light of day, I had to let go of my fears, and hang on for dear life to the only hope left. And that required me to let go of my daughter, to entrust her care to strangers who could hopefully do what I could not. Save her life. Not just in the literal sense of keeping her alive, but also in giving her back a life that she could cherish.

Life is full of opinions, contradictions, absolutes and ultimatums. So how in the world do we know what to believe, who to trust, when to let our instincts take over, and when to let go? How often have we come to a decision only to find ourselves questioned, criticized or thrown a huge road block just when we thought we were finally on course? What happened to that ‘letting go’ stuff that was supposed to make everything so serene??

As a parent, it can be really hard because we have an intense emotional connection with a loud and strong inner voice. Recently, I had one of those moments. Everything in my head, my logical side, clearly and definitively pointed to the next step. Yet my emotions were a jumbled, wavering, conflicted mess.

When our kids are sick, we will do whatever it takes to help them to get well. Sure, some of the stuff isn’t fun. Remember those well baby check-ups where our sweet, pudgy baby’s face transformed from smiles to screams from the obligatory shots? But the importance of protecting our baby’s health far outweighed a few tears. So when my daughters’ illness had a grip so tight that I could literally see the life fading from her day by day, there was no question that I would do whatever was necessary to save her. But when that meant seeking treatment away from home, my ability to ‘let go’ got pretty shaky. I recognized that I needed to stop being her case manager, I needed to stop playing amateur psychiatrist/therapist, and I needed to start just being her MOM. Yet my desire to protect her from any further pain clouded my judgment and made me question my decisions.

Every clinician and professional involved assured me that this was the right choice, that my daughter desperately needed 24/7 care. Even the insurance company agreed (for once). But when my daughter fought back, giving me one compelling and terrifying reason after another why residential treatment would only make things worse, my resolve waivered and nearly crumbled. A big part of me wanted to let go, not fight for treatment, just wrap my sweet, precious daughter up in a blanket, hold her, rock her, comfort her and take away by osmosis, every last shred of pain and anguish, illness and torment.

Late into the night I searched the internet, trying to find evidence of the horrific things she had told me about the treatment center. I half hoped that I would find the smoking gun that would allow me to abort our plans, to avoid the inevitable trauma and conflict that (I perceived) lay ahead. Ironically, the more I searched, the more I found support for why this program really was rock solid and one of the best available to help my daughter. No skeletons in the closet, no horror stories, the worst I found were some complaints about the billing department.

So, in the light of day, I had to let go of my fears, and hang on for dear life to the only hope left. And that required me to let go of my daughter, to entrust her care to strangers who could hopefully do what I could not. Save her life. Not just in the literal sense of keeping her alive, but also in giving her back a life that she could cherish. My daughter needed reasons to live. She needed reasons that came from within her, not external incentives or values leveraged by others. My motherly love alone could not save my daughter. She needed to love herself.

This type of letting go meant trusting my survival instincts, the ones that told me that my daughter’s illness was so severe, so lethal that in order for her to survive, others far more qualified needed to take charge. Letting go meant looking at the big picture, not getting caught up in the anguish of the moment, or clinging to each small, fleeting, glimmer of hope. Letting go meant taking a huge leap of faith that as agonizing and painful it was the temporary pain would be worth the longer term outcome.

I can now say that for all of my doubts and fears, taking that leap of faith proved to be unequivocally the right thing. As I will share in part 3, I continue to be faced with conflicts over what it means to let go.  But what is emerging (for me) is a pattern that I hope will become a template to help me understand what I try to hang onto and why. At least I’m learning to ask myself the right questions.

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 12 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci has three daughters ages 17, 19 and 21.  The oldest and youngest were diagnosed with mood disorders at ages 9 and 10 respectively.

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Am I, or Am I Not, My Medication?

I do understand how it’s possible to feel like being under water when first taking psychiatric medications. In the beginning, the drugs can make us feel separate, sick, tired or sometimes too up. Getting used to new medication can be a real trial.

A very dear friend of mine is battling depression. Her doctor recently increased her dose of Cymbalta and she had an adverse reaction: she couldn’t stop sleeping. Since being tired all the time was not acceptable, her doctor slid her dose backwards to her original dose. Because of this recent adjustment she wondered, out loud to me, whether she should just go off the anti-depressant all together. She wondered if her “real” personality would come out if she was drug free.

I realized quite quickly, although I kept it to myself, that I think the opposite. I am not a doctor and am very careful with the information I pass along. Speaking only for myself, I think the medications I take allow my personality to flourish.

I have looked at the question by my friend who thought her “real” personality might come out if she was drug free; I’m sad that this friend doesn’t seem to know what her personality is. I do understand how it’s possible to feel like being under water when first taking psychiatric medications. In the beginning, the drugs can make us feel separate, sick, tired or sometimes too up. Getting used to new medication can be a real trial. Everyone has their own physical reactions and most of the time those initial reactions leave over time. Some of the newer medications work right away. I’ve been on several meds over the past 15 years. What I’m on now works. When I first went on a mood stabilizer and an anti-depressant my reactions to these drugs were quite dramatic. I’ll never forget when, about a month after first taking the two medications, I all of a sudden felt better. The change was dramatic but, with the drugs that were available back then, it took about a month.

I’ve had some real trials with medications. Some made me sick, others almost killed me but I have persevered because the meds allow me to function. Why would I go through drug trials if there were no healing on the other end? I thought, when I was un-medicated and so sick, that I would never find myself again. I thought I’d never write or draw again or be happy again. I was sure that I would commit suicide because the pain was just too much to bear.

If we’re given the right medication we can subdue the negative symptoms of mental illness. I used to not be able to get to sleep until between 1AM and 4AM. Now, with medication, I’m able to get to sleep around 10PM. And I wake up with no residue in my brain. I used to not be able to control mania or depression but it’s been several years since I was controlled by either.

Medication is not for people who want instant results. Taking medication can be difficult but, unless you can find results in talk-therapy, there is no other way to quiet the mind of a mentally ill person.

I’m ready to talk to my friend who is battling depression. I’ve known her when she was down and out and I’ve known her when she’s alright and I can only say that the symptoms of depression are not her ‘real’ personality; they are symptoms of depression.

The latest example of mental illness on a rampage is Elliot Roger, the 22 year old who killed in Santa Barbara. He was able to fool his parents, the Santa Barbara police, a therapist. This is yet AGAIN an example of a shooter who slipped through the cracks. This is yet AGAIN the work of a mentally ill person who should have been taken into a locked facility not because he was a danger to himself or others but because he NEEDED TREATMENT!! His parents knew he needed help but Roger slipped through the cracks. If you can, please write your congressional representatives and/or senators and plead with them to do what’s needed to change the law. I’m writing these words on Memorial Day and it occurs to me that not only are we remembering our troops but we should also be remembering the many many young people and others who have died because of shooters in our own country. When will this END??

Chris Martinez, a 20 year old victim, has died at the hands of Elliot Roger. Chris’s father is very angry and is not afraid to show his anger. I applaud him. I have a mental illness and I support changing the laws to at least try to keep guns out of the hands of the mentally ill. We must allow families of the mentally ill to get help when their loved one NEEDS TREATMENT, not because he/she is a danger to herself or others. This criteria is too precise. We need a criteria that’s vague to allow our loved ones to get NEEDED TREATMENT in a lock down ward. We need to stop tiptoeing around this problem. I hope Chris Martinez’s father keeps yelling.

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Harm’s Way

The reasons for self-injury are as varied as the individuals who share this widely misunderstood symptom. People living with bipolar disorder, PTSD, depression, schizophrenia, and borderline personality disorder are all at risk for self-harming behavior. If this is you, take heart. You are not alone, and you can get help.

Because of shame, I rarely speak about a particularly disturbing aspect of my mental illness. I discovered it by accident as a child, likely in response to having my innocence unravel. What began as a coping mechanism became reflexive behavior, in turn developing into a symptom of its own, ultimately integrating itself into my diagnosis. When things get dark internally, when I am faced with more anxiety than I can handle, when the impulse to protect myself from my fears is unavailable to my conscience, I reach for the valve that releases the pressure, and nothing and no one can make me stop. I go directly to self-harm.

The first time I hurt myself I used a nail I’d found in the alley. After developing an infection, I needed a tetanus shot. Unlike the needle, the nail never hurt; to the contrary – it made the Voices stop. I could calm down. I could think. It was a different kind of medicine.

I can hit my body with enough force to punch through a plasterboard wall. I pound my thighs until they bruise, or bang my head against the countertop. Later I discover yellowing blotches and wonder how they got there. I’ve learned that I am using pain to create a semblance of control, but I rarely feel that pain, and control too seldom follows.

Self-harm is private, as private as self-love. While relatively few, if any, stigmas are attached to caring for one’s self, the opprobrium of disclosing self-harm is not only widespread, but encouraged. A popular, but grossly incorrect, belief is that people who live with this symptom are hurting themselves to get attention. The guilt associated with self-inflicted injury precludes any attention-seeking. It’s enough of a challenge trying to be accepted as a person living with a mental illness, let alone deal with the disparaging remarks and bullying that accompany being honest about those bruises and marks. Long pants and hoodies do a fine job of covering, but they’re more than a little obvious in the heat of a summer’s day. It’s easier to hide the evidence by starting in a place no one would look than it is to concoct a wall of lies to hide behind.

Shame on top of shame on top of shame. It’s a self-generating puzzle box nestled deep within my diagnosis. It might start with a movie where a recluse marries a mannequin, or a writer starts dating his operating system, but eventually the message finds its way into my soul: I am a failure unworthy of love. I deserve to be beaten.

The pool of my peers as they build relationships, start families, and create successful lives for themselves reflects nothing but sky when I gaze into it. Advocating for equality in the world of social interaction is nothing compared to admitting that it wasn’t the cabinet door that I slammed into in haste. If the house of cards shows signs of instability, I isolate. When it reaches a certain point, the fists come out. That brief moment of burning muscles signals the end of any frustration or emotional pain. Sleep and sunrise guide me upstream from the nightmare, renewed. But shame settles in when I see my legs in the shower, my face in the mirror, the purple-blue flowers of self-loathing bled and ruined.

The reasons for self-injury are as varied as the individuals who share this widely misunderstood symptom. People living with bipolar disorder, PTSD, depression, schizophrenia, and borderline personality disorder are all at risk for self-harming behavior. If this is you, take heart. You are not alone, and you can get help. There are others like you who experience this, and there are professionals who are willing to listen. They can offer assistance in ways that go beyond the shame and the fear of exposure, so that even if it’s just for a little while, you can find some relief. It’s a better kind of medicine.

The society we live in is waking up to the need for a change in the way it views and deals with mental illness. Regardless of your diagnosis, acceptance is finally a seed of an idea that has been planted at a grassroots level, and things will get better. They already are. But if you cut, or if you bruise, or burn, beat, pull, or puncture your body, the harm it can do runs a terrible risk of taking you out of the game before you get a chance to see just how vitally important you are to the movement of change that we’re all creating together.

I know it hurts. That path our demons take us down is a horrible trap, and the relief is so short, the control is so fleeting. I understand because I’ve been there, because sometimes I still go there. Your therapist understands, too, because it’s their job to understand; they may have even walked that path before us.

I know that it gets confusing, that we don’t always understand why or what or how or even when. I know that sometimes it’s a long and calculated plan from here to there, but please know this – as your body ages, without some form of intervention and professional help, it will begin to heal less quickly, and the shame will imbed itself more deeply. I’ve learned this the hard way, and I am finally starting to break free after sharing my story with my therapist. We have found a way to help me, and that’s a start. Share your story, please. You are not your diagnosis and your symptoms aren’t your life. Your future can be free from pain. Find that trusted person and start a conversation. Bring change to mind and body – yours.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Letting Go - Part One

We have a rule in our family. If you get a song stuck in your head, you are NOT allowed, under ANY circumstances, to share that song with anyone else in the family. Because, of course, that will cause said song to become stuck in said other family members’ head. Of all the rules we’ve had, tried or tossed, this one has been a keeper. Until now. Because I’m going to break that rule, not with my family, but with all of you.

We have a rule in our family. If you get a song stuck in your head, you are NOT allowed, under ANY circumstances, to share that song with anyone else in the family. Because, of course, that will cause said song to become stuck in said other family members’ head. Of all the rules we’ve had, tried or tossed, this one has been a keeper. Until now. Because I’m going to break that rule, not with my family, but with all of you. Consider yourself warned . . . the song that keeps coming back into my head is “Let It Go” from the hit movie “Frozen” (your choice of the version, Idina Menzel or Demi Lovato. Makes no difference to me).

Why? Because it’s become somewhat of a theme song, an anthem for me, to keep me on track (I know, it sounds contradictory to think that ‘Let It Go’ could steer me in the right direction, but bear with me).

Most of my life I have operated under the assumption that being in control, in charge of my life, my job, my family, my diet, my budget, my health . . . pretty much everything, meant that I was on course, doing the right thing, being independent, responsible and successful.  Once I became a mom, that philosophy really took hold. Busy mom, busy wife, busy employee, of course I had to be in control in order to juggle it all and succeed. In reality, however, the more I worked to be in control, to manage, plan and orchestrate every moment of every day, the more out of control I felt. My kids didn’t know about my grand plans, they didn’t care that we were supposed to be at an appointment at 9:30 am sharp. So they kicked of their boots in the car, had diaper explosions, tantrums, dumped a juice box all over their sister’s head, forgot their favorite blankie . . . all (or so it seemed to me) in an effort to derail my well laid out plans.

Of course, the more things didn’t go according to plan, the more I stressed, the more I worried, the more frustrated and discontented I became and the more I blamed anyone or anything except me. It never occurred to me that my rigid, structured plans might be at least a part of the problem.

With this sort of philosophy, it doesn’t take much imagination to realize just how derailed my life became when first one and then another of my children started showing signs of mental illness. If I couldn’t keep things on track before, I was NO match for the unpredictability and chaos that comes with unstable moods in a young, developing mind and body.

My biggest problem wasn’t the illness – it was my lack of understanding, my lack of insight, my lack of ACCEPTANCE that I was not in charge. My second biggest problem was that I was modelling behaviors and attitudes that screamed loud and clear to my children that at all costs, one must fight to be in charge, to stay in charge, to be on top of everything. Control (ideally by Mom) was essential.

Imagine that. What a message to send to a young child (or a spouse or friend). “Being out of control is bad. Not fighting back to regain control is bad. When all else fails, Mom will take control and fix everything or die trying”.

Hindsight is 20/20, no doubt about that. Looking back I can see just how things played out because of my beliefs and actions. There are certainly a few things I’d do differently if I could. But part of that 20/20 hindsight is recognizing that what I’ve learned is a process, and neither I nor my kids would have grasped the wisdom of letting go if we’d not lived through our individual and collective experiences, mistakes and successes.

Over the next few weeks, I’m going to blog more about the concept of letting go in different ways and how life has become more balanced, more stable, more enjoyable and more serene. It’s sort of like when you are first learning to swim and are told to lie on your back and float. Every muscle in your body is fighting to keep from (perceived) drowning. You thrash around slowly at first, then more wildly with each sensation that you are sinking. Finally, with a great deal of prompting and reassurance from your instructor, you relax, tip your head back a little, let your arms and legs go limp, and . . . miraculously . . . you float.

This isn’t a quick fix or a sure fire guarantee for world peace, lasting tranquility or the solution to all of your problems. However, as I will share through some of the most difficult times of my life, less control and more faith (trust in the unknown) has led to an easier journey and I’m pretty sure better outcomes.

Letting go doesn’t mean complacency. It doesn’t mean sloth or abdication of responsibilities. It just means slowing down, taking in the world around you, sensing the natural order of life, and trusting that it’s not ALL on your shoulders; it’s not ALL up to you.

For some additional insight into the song ‘Letting Go” read the following article about the inspiration of the songwriters: Click here

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 12 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci has three daughters ages 17, 19 and 21.  The oldest and youngest were diagnosed with mood disorders at ages 9 and 10 respectively.

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Mother’s Day

Today, being able to invite my three children and my grandbaby into my home, with nothing to hide, is the most precious gift I have ever given to myself and to them. I’m proud of myself and I’m proud of my children. We have come through the fire of addiction and mental illness and we’ve come out on top.

My three grown children came out here to celebrate Mother’s Day with me. My daughter brought her baby girl, Phoenix. Yesterday marked my first grandchild’s very first Mommy’s Day. She was born March 3rd and is, of course, the cutest baby I’ve ever seen or, I could say, she is as cute as each of my children were. But enough fluff!

My children came bearing sandwiches and a beautiful hanging basket of flowers as well as a potted begonia. And my daughter gave me a gift from Phoenix, a mug that says “World’s Best Grandma”. I am truly blessed, but I wasn’t always.

When I think back on my behavior when my children were growing up I cringe.  I wasn’t always there for them. I was a drunk – actually, I still am a drunk but the proper way to say it is: I’m a recovering drunk. I haven’t had a drink for 13 years and three months. And I no longer let my guard down. I did let my guard down once and allowed friends to bring wine to a shower I was hosting but I found myself walking around my own house with clenched fists. Having booze around was not okay. I’m glad I know that and can guard myself from future clenched fists.

I do know that, if I was still drinking, the Mother’s Day celebration could have easily ended up as a disaster or, they might not have bothered to come out here to my home. But, instead of me being sloppy drunk, we had a really wonderful afternoon. We sat around and laughed and chatted. My grandbaby entertained us too. I cringe at the thought of being around the baby drunk. How awful that would be! I was known to fall and I could have fallen with her in my arms or even worse, I could have dropped her! But I doubt if my daughter would have allowed me around her baby if I was drunk.

I recall that when I first sobered up, with the help of Alcoholics Anonymous, I didn’t know how to be happy without booze; I didn’t know how to be angry or sorrowful or anything without booze.  And I wasn’t in touch with the fact that I should have been embarrassed by my behavior. It wasn’t until I sobered up that I saw how embarrassing my drunken behavior had been. Getting off booze allowed me to focus on what was the underlying cause of my behavior and that was bipolar disorder. I went to a psychiatric hospital four years after I sobered up. It was the fact that I was still manic and depressive, even though sober, that gave the doctor my diagnosis. In fact, I was told that I wouldn’t have been able to be diagnosed if I was still drinking; I had to sober up first.

Today, being able to invite my three children and my grandbaby into my home, with nothing to hide, is the most precious gift I have ever given to myself and to them. I’m proud of myself and I’m proud of my children. We have come through the fire of addiction and mental illness and we’ve come out on top. I say ‘we’ because family suffers from both addiction and mental illness. It’s a ‘we’ game. Just think if I’d not sobered up. I doubt if I would have had such a wonderful Mother’s Day and baby Phoenix wouldn’t have had such a wonderful Mommy’s Day with her mother and uncles and grandmother. I’m so very grateful and encourage any and all who are trapped in the prison of addiction to do something about it!

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Straws

It is human to offer support. It teaches us to recognize our strengths and weaknesses, to let go of ego and give meaning to life. We learn about borders and boundaries, as opposed to fences and defenses. Caring for one another is our collective responsibility. It is a defining component of wellness.

I want to prove to myself that I can live a life the way I imagine other people do, relying on myself to get things done, handling the simple chores and the difficult tasks. Inevitably, I forget one key point: I have schizophrenia. It’s a game changer. Not just for me, but for everyone involved. It becomes obvious when I reach out for help and can’t find it. It’s worse when I need help and no one volunteers. It gives one pause for thought.

When my stepmother was battling cancer, friends and family filled the house daily. Every chore got done, every bed got made. Groceries were bought, meals were prepared. Life made as much sense as it possibly could in a house where illness was a roommate.

I saw, firsthand, people coming together to help a sick person deal with the minutia of day-to-day life. It instilled in me a clear understanding of a creed both parents exemplified: reach out to those in need, and do so in a selfless manner.

It is human to offer support. It teaches us to recognize our strengths and weaknesses, to let go of ego and give meaning to life. We learn about borders and boundaries, as opposed to fences and defenses. Caring for one another is our collective responsibility. It is a defining component of wellness.

Others have taught me that my version of helpfulness is sometimes a little bit strange. For example, I might help by arranging the drinking straws. Or stacking the napkins, or microwaving the kitchen sponge. I learn too late that the level playing field isn’t. Because schizophrenia is a thought disorder, misunderstandings are going to occur. In a society where being in control is seen as the backbone of success, a guileless mind is considered a dangerous thing.

Agencies can certainly be helpful, but often it’s the personal touch that keeps a mentally ill individual grounded. Knowing that we’re accepted one-on-one for who we are can make a huge difference in how we relate to ourselves and the world around us.

When I need help, I resist asking the person snowed under by information. Processing can be overwhelming for them. I understand this. There’s a lot to learn, and that can be discouraging, especially when media misinformation has such a strong influence. They are afraid of what they’ve been told, and stigma keeps them attached to their fears.

I can’t ask the person who lives in denial, who tells me that my experiences aren’t real. Their viewpoint is totally subjective, but I won’t make them wrong for it. Driven by a fear of the unknown, they become uncomfortable with new information. Discrimination keeps them anchored in the safety of the status quo.

So I ask the people I’ve relied on before. They approach helping others much the same way I learned to: wholeheartedly and without judgement. These are the relationships I cherish the most – with them I am an open book. I answer as best I can when they ask me questions about paranoia.

They try to comprehend how fear controls my life. They come to understand the delusions, hallucinations, and childlike frame of mind typical of disorganized schizophrenia.

I’ve learned in therapy that it can wear a person out, the unpredictability of my symptoms, the anxious calls and odd ideas. Believe me, I get it – it wears me out, too. If it becomes evident that they’re tired of me, I make myself scarce. I don’t always know if that’s truth or confusion. Either way, I understand that they have real lives. Helping me buy groceries or clean the bathroom has no appeal. I “should” be able to do it all on my own. The disconnect is frustrating, and I lose perspective. I lose friends.

We are taught to believe that everyone thinks the same way, that everyone is in control of their own mind, and that Free Will operates under their command. This is the paradox of living with a chronic and disabling thought disorder. We know differently. Everyone knows differently.

Schizophrenia does not follow the simple commands of social dictation and, as such, is not tolerated in our culture. Society appears to want not to believe in a diagnosis they will only accept as a metaphor for the id unchained. What they fantasize about doing, were the moral shackles off, they superimpose as fact on the uncontrolled mind. Thus prejudice is born and trained into the culture. It’s embedded in our everyday language. It’s ingrained in our society. It goes beyond any friendship or variation of hospice. Discrimination is insidious.

One percent of the world’s population is the target of this heedless intolerance. It may take generations to turn such inequity around. It can be done. We just need to ask.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Let’s Talk

May is Mental Health Awareness Month. I hope to reveal my mental illness to strangers more than usual this month. I’ll start the conversation by saying, “Do you know that this month is Mental Health Awareness Month? I have a mental illness and I’m so very grateful that we can at least talk about it this month, aren’t you?” Or, if you want to be more brazen, ask “Is there mental illness in your family? There is in mine…” Let’s get out there and start the conversation. Begin by talking to neighbors, taxi drivers, store clerks, EVERYONE!!!!

I have a problem with exclamation marks!!!!!! Yeah, like that. I guess that when I’m writing and feeling loud and fun I want to share my enthusiasm with you and how better to do that than use an !!!!  But I really mean it! It’s a miracle that we get a whole month to talk about our stories or the stories of a loved one. We can spend this month hanging out our dirty laundry because we’re NOT ASHAMED of our mental health anymore! At least we shouldn’t be.

Right now I’m lying on my couch in Montana burning up with fever and feeling ever so awful. Fever and flu are acceptable illnesses. What did you feel when you read the above? Oh, poor Jessie, I hope she gets better fast. If I had told you that I was lying on my couch in Montana with voices in my brain what would you have thought? YIKES!? Too much information? I shouldn’t talk about mental illness like that?

In 2009 Glenn, my children (except for one) and Glenn’s daughter, traveled to Grand Central Station to shoot a public service announcement. I asked her, a few years before, if she could do something to help alleviate the suffering of mental illness. An exceptional team under the direction of Ron Howard gathered and came up with the now familiar PSA. We wore t-shirts; mine was ‘bipolar’, my elder son’s was ‘schizophrenic’ and Glenn’s was ‘sister’. My son and I were afraid and I tried to hide in an armchair. The echo in the train station was awful but the worst part was knowing that hundreds of people were looking at me and reading my shirt. I was sick with shame. I lived with undiagnosed bipolar disorder until I was 50. I knew I wanted Glenn to help but I hadn’t counted on ‘coming out’ myself.

That was the beginning and my dear sister has not failed to push and push and push the boundaries. We have come a very long way in only 5 years! We need ALL OF YOU to continue stepping up to talk about mental illness. I’m so proud of the progress we’ve made.  I’m always surprised at how many people have stories of mental illness.

A few months ago I was traveling from somewhere to somewhere and was going to miss my flight if I didn’t get to the gate pronto. I saw one of those electric carts with a driver and yelled “Hey!”. He stopped and told me I could hop on. He asked me where I was going, and why, so I told him I was on my way to speak about mental health, mental illness. He was quite vociferous but after telling me all about the cart he was driving and all about which carts do what and how each cart made money, he slowly steered his many words to a tale about his mother-in-law. Suddenly I realized he was telling me that she was mentally ill. Perhaps it was because I was so stressed and tired but my eyes filled with tears. (I don’t cry easily) I was so very touched that he finally was telling me what really mattered. We spoke for a short while then reached my gate and I had to go.

It’s these anonymous conversations that plant the seeds of help that are so very important. I always talk about Bring Change 2 Mind because my story alone is not enough. On Bring Change 2 Mind’s website and social media channels there are so many faces and voices who talk about their experiences with mental illness.

In the New Testament, Hebrews 2:18:
“Because he himself has passed through the test of suffering,
He is able to help those who are in the midst of their test.”
(I substitute “she” and “herself” for me)

This is not a modern concept; I’m comforted to know this was written thousands of years ago – that human’s haven’t changed much.

May is Mental Health Awareness Month. I hope to reveal my mental illness to strangers more than usual this month. I’ll start the conversation by saying, “Do you know that this month is Mental Health Awareness Month? I have a mental illness and I’m so very grateful that  we can at least talk about it this month, aren’t you?” Or, if you want to be more brazen, ask “Is there mental illness in your family? There is in mine…”

Let’s get out there and start the conversation. Begin by talking to neighbors, taxi drivers, store clerks, EVERYONE!!!! See? Sometimes exclamation marks really work!

HAPPY TALKING!!!

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Chiaroscuro

One thing I know about myself is that I feel very deeply. Another thing I know is that I don’t know how to feel. I don’t know what that means. I have no context. This is not tranquility. This is something else. Something nameless, formless. How do I feel?

One thing I know about myself is that I feel very deeply. Another thing I know is that I don’t know how to feel. I don’t know what that means. I have no context. This is not tranquility. This is something else. Something nameless, formless. How do I feel?

I can see between the frames of the film as it makes its way through the projector, instant by instant until a story is told, but my experience of you as you tell me your tale is scattered to the sands of my breaking memory. I scan your lips intently as they form the words you share, sprocketing their sounds past the shutter and the lens, but your eyes and lips float above the surface of your face like lazy koi in a still pond. I define the moment I am living in by the moment I am living. I am the moment. I meet you in the spaces in between. But how do I feel?

My senses are in overdrive all the time. That’s their baseline. Beyond that, it’s a mash-up. Seeing the flavor of touch, or hearing the scent. It’s not a magical world for me. I can’t switch it on and off. Psychedelics might afford a person a sensory experience akin to mine, but they get to leave it behind after the chemicals wears off.

I can’t wind down, even at bedtime. The blankets come alive. They rub against my skin and keep it awake with the sound of touch. Not the sound of fabric or fabric-on-skin, but the distant, rolling thunder of not sleeping. When slumber does finally wash over me, it’s at a price. The Voices start to taunt and ridicule. They pose riddles that would baffle even Gollum. Falling asleep takes a lifetime. I am old before I find peace. I am at the mercy of the nightmare when dreamtime comes.

I found a silver lining: I learned to access and channel my senses into art. I studied the masters in college and honed my skills. I found a way to shape a mental illness that I never knew I had into a way of expressing the world around me. I learned this secret from the jazz musicians, from the poets, the filmmakers, and game designers. Alice never stumbled into Wonderland – she arose from a dream with her high beams on, enlightened, aware, awake.

No amount of cake or spice will allow anyone even the slightest hint of a glance of a peek into the very real world of psychosis aligned with skill. Every time a journalist defaults to using the worn out cliche of the Tortured Artist slaving away in a garret, creating their masterpiece under the influence of some illicit substance, walk away. Tune that out. It’s an insult to every person living with a thought disorder, artistic or not. There is no romance in the internal torture of delusion, depression, or trauma. Trivializing that person’s psyche and the soul of their expression is inhumane.

So how do I feel?

Did I answer the question yet? You were speaking rhetorically, correct? Because to ask how I “literally” feel would limit my answer to the use of my fingertips. Perhaps you meant “figuratively”, as in “what emotional state am I in at the moment”, in which case it would be appropriate to scan the range of human emotions: acceptance, aggression, ambivalence, apathy, anxiety, compassion, confusion, contempt, depression, doubt, ecstasy, envy, embarrassment, euphoria, frustration, grief, guilt, hatred, hope, horror, hostility, hysteria, loneliness, love, paranoia, pride, rage, regret, shame, suffering, and sympathy.

Psychiatrists define me by my diagnosis – Paranoid Schizophrenia – so that’s a box I can tick. My clinical subset is Disorganized Type, which checks confusion off the list. I have an anxiety disorder which exacerbates my other symptoms – that could be considered a source of frustration.

Some news reporters would have you believe that I can only experience aggression, hatred, hostility, and rage. Schizophrenics portrayed in the movies are so unhinged that horror, hysteria, euphoria, and ecstasy charge after them like the Four Horsemen of the Apocalypse. An audience might envy the purported freedom from all reason, believing the play’s premise when it couldn’t be further from the truth. This is not impartiality. This is something else.

What about my having to accept my diagnosis, or the depression, doubt, and shame which follows? How am I supposed to deal with the ambivalence, apathy, or contempt generated by others when I show them my authentic self? Where is the compassion, the sympathy, the love? Embarrassment and guilt strip me of hope and pride, reinforcing the regret that my life was lived for nothing but suffering and grief. With the list whittled down to a whisper, all that remains is loneliness. The space between the space between the frames.

One thing I know about myself is that I don’t know how to feel. Another thing I know is that I feel very deeply. Every day is a day when I can rise from a dream with my high beams on. Enlightened, aware, and awake.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Waking and Walking

My medications make it difficult to wake up, get up, move, in the morning. The worst part of it was the fog surrounding my thoughts. I simply could not see through the fog no matter how I prepared for it.

A neighbor of mine named Lois walks past my house every day. She has earphones in and is listening to a book on tape. If I yell out to her, however, she will stop to talk. She’s slender, unlike me, and pushes on in any weather. In fact, if you want to know what the weather will bring on any day all you have to do is spot Lois and her outfit will tell you.

I envy Lois her slimness, her dedication to exercise. She doesn’t walk fast. Every time I see her she’s just trudging along. She told me yesterday, when I was out cleaning up the yard from what was under winter’s snow, that she enjoys walking the same route every day because she watches the progression of the trees and flowers through the seasons. And she doesn’t have a dog with her either.

Now this is where I begin to get confused. I could walk everyday like Lois. I could figure out the technology of listening to a book on tape. I could. But what would I do with my dogs??? That sounds pretty stupid doesn’t it. Does it? I guess that depends on where you stand with dogs. (I almost wrote “that depends on where you stand on dogs” but that definitely doesn’t sound right.)

I would feel vulnerable and nervous if I didn’t have my dogs with me. This might be a family problem as we all have multiple dogs and our lives revolve around them.  I know, but that’s just the way it is.

So, if I turned left out my gate we would have to walk past a neighbor who has two big dogs. My tiny seven pound Snitz has already been attacked by one of the dogs, a part St. Bernard. So that’s out. If I turn right out the gate we would be fine for a while but then there’s a fork in the road with traffic. I could load all four of the doggies up and drive up the mountain to a road that is rarely used and the view from up there is spectacular.  I think that’s what I’m going to have to do.  Now, to tackle the other end of this problem, the end with which I should have begun this blog, but didn’t.

My medications make it difficult to wake up, get up, move, in the morning. The worst part of it was the fog surrounding my thoughts. I simply could not see through the fog no matter how I prepared for it. For instance, I would make an elaborate plan the evening before to try to force myself to read a note in the morning telling me why I needed to get up. I would set an alarm but when I woke up I wouldn’t read the note and I’d hit the snooze button over and over! (I have a great appreciation for the husband who would bring me coffee in bed to help me wake up – but he’s long gone.)  Nothing seemed to work until I landed on a simple plan: TAKE MY MEDICATIONS EARLIER AND GO TO BED EARLIER!!! Why did it take me so long to figure that out? The answer is, I believe, because I was undiagnosed properly until I was 50 and that’s many years of habit to break. I love nighttime. I love the quiet and the dark and going to bed late is what I did, even when I wasn’t manic. Nighttime was my time. This same husband would go to bed at 9pm, I would join him much later. This didn’t help our marriage. It’s hard to believe but I actually go to bed at 9 or 10 now and get up at 8:30am. Amazing! Sometimes the simplest fix is all there is to it!

So, waking and walking are related. Getting exercise helps with sleep and helps with the guilt I feel if I don’t walk my dogs.

Walking or not walking shouldn’t be a matter of debate. I should be like Lois and walk, no matter what. I’ll figure out the book on tape.

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Mutant and Proud

We are on the receiving end of the misconceptions and the bullying, not only from without, but from within. To reverse this, it is imperative that we speak up, not act out. First, we need to understand who we are and what our disorders mean to the quality of our lives. The next step is to address the misconceptions responsible for public prejudice. This begins with education, not hearsay. Caricatures of the mentally ill are the shorthand of the weak.

Because I am an advocate, I am willing to address my self-stigma and the harm that it does me. It’s not easy, and I won’t pretend that it is. A day does not go by that I don’t feel ashamed of being a person living with schizophrenia. I am not as often willing to address the issue of social stigma, because to call attention to it is to feed into its ignominy. Therein lies the rub.

When I talk to myself in the grocery aisle, or make the March Hare proud at Starbucks, how am I any different from my immigrant Irish grandmother, stumbling through American slang with a mouthful of malapropisms? The easy answer: her brogue is charmingly quaint, where my schizophasia is disarming. The box-boy helps Gramma get her groceries to the car. I get Sherlock following me like a trail of cheap perfume.

Living in a culture where the mentally ill are believed to be dangerous, violent, and unpredictable, is not merely difficult, it’s dehumanizing. Our society refuses to acknowledge its shortcomings in this area. To do so would be tantamount to losing their scapegoat, thereby sacrificing the convenience of discriminatory blame. Sensationalism fuels the media, advertisers tally their profits, and people living with a mental illness become so much collateral damage. Is it any wonder that we resist disclosing our diagnoses?

Most of us would rather hide than face those feelings of discontent and shame. The experience of being continually dismissed teaches us to lie, to hide our illnesses, and to adopt the behaviors of the emotionally camouflaged. It is easier to not speak up, and safer to blend in. But we don’t blend well, and it’s as obvious to us as it is to our detractors. Before long, we find ourselves participating in the oppression of our peers by remaining inactive and silent.

Eventually the mask has to come off, if for no other reason than to reclaim our dignity. If we can pretend to be Ordinary People successfully enough to walk among them, then we can certainly be honest enough in our hearts and minds to accept who we are. The obstacles we have to overcome every day will never be understood by the general public unless we take it upon ourselves to illuminate. We are the experts of our illnesses. It is vital to our mental wellness to express how we feel. When we share the knowledge we have about ourselves, we cause a necessary change to occur. This is the only clear path to eliminating the stigma and discrimination that surround mental illness. It won’t happen without us. Because it’s about us.

We are on the receiving end of the misconceptions and the bullying, not only from without, but from within. To reverse this, it is imperative that we speak up, not act out. First, we need to understand who we are and what our disorders mean to the quality of our lives. The next step is to address the misconceptions responsible for public prejudice. This begins with education, not hearsay. Caricatures of the mentally ill are the shorthand of the weak.

Schizophrenia was once thought to be the result of bad parenting, but so was demonic possession. Stress-vulnerability was considered for a while, as was environmental susceptibility. Whatever the course of the illness, its origins were discovered in a chromosomal anomaly similar to those found in autism. The mutation’s importance in the disorder presents a compelling argument for schizophrenia being more akin to a condition than an illness, the exception being those individuals who came to their symptoms through substance abuse. Their psychosis is drug induced, not genetically based. No less debilitating, mind you, still maligned and stigmatized, but more a custom job than a factory install.

I have heterochromia (one eye is green, the other brown). My hair is naturally red. There is no gene for purple hair, to the chagrin of my punk rock friends. Comic book superhero Wolverine has an indestructible, medically enhanced, metal skeleton; his X-Men comrade, Nightcrawler, has teleportation powers which were there from birth. When I was but a twinkling zygote, the micro-duplications of a single chromosome made certain that my premature little self would be born with schizophrenia, just as surely as my Gramma’s Emerald Isle heritage would ensure my bonnie freckles and crimson curls.

Does my hair color make me a societal threat? How could it? It’s just hair. Should I feel ashamed for being elfin? Why? I’m physically fit. 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.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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My Journey Continues

For years I had depression. There was a time when leaving the house for just one hour was celebrated. Then, after much support, and what I can call a full recovery, I was in a good place. I had made some new friends - some through BC2M. I was happy, I could truly laugh and I enjoyed life! For What more could I ask?

For years I had depression. There was a time when leaving the house for just one hour was celebrated. Then, after much support, and what I can call a full recovery, I was in a good place. I had made some new friends – some through BC2M. I was happy, I could truly laugh and I enjoyed life! For What more could I ask? But unbeknownst to me, I would receive much more.

There was a time in my past when work became everything. Working 60-70 hour weeks, my life began to revolve around the office and this became truly unhealthy. As my depression took over, I found myself on the other side of recovery having not worked in over 8 years. Then, in July of 2011, I was fortunate to have been offered a position with the Canadian Mental Health Association – Nova Scotia Division.  Suddenly finding myself in the workforce again, I learned I could function in such an environment. I was able to make decisions and exercise good judgment. In my two years at CMHA NS my self-confidence and self-esteem greatly improved.

But more would unfold for me…

Last summer, I found myself able to see the Rolling Stones perform in Toronto and then in London. Such an amazing time! This was huge for me. Live music was yet another aspect of my life that my depression had taken away for those long years. Later that summer, I took myself to the Dutch Mason Blues Festival. Before his passing, Dutch Mason was known as the Prime Minister of the Blues here in Canada. I have seen him perform many times over the years. His hometown of Truro, Nova Scotia, celebrates his life by hosting this Festival every summer. I wanted to attend for 8 years. My depression left me unable to do so. Later, though I was healthy, there was still a complete lack of funds. Finally, last summer, I got there!  I even found myself able to buy a VIP ticket. An awesome weekend!

So, life was getting better, much better…

In November, I attended a black tie gala fundraiser in Halifax for the Mental Health Foundation of Nova Scotia. Yet, another event I had wanted to attend for years. More and more I was finding myself checking off wishes on my wish list.

But earlier that weekend, life improved in a wonderful way that I was not expecting. I met someone. I was able to sit and talk to a woman; I hadn’t done that in years. Emily – em as she prefers – EM as I type it in text messages. There I was with the self-confidence to actually sit down and exchange thoughts and stories with her. Years ago, that had not been a problem. But in recent years – not part of my life.

I told her about my depression. I thought, my journey with depression is a factor in the person I am today. After all, she could simply go home and Google my name – my life is out there. Being forthright was my chosen approach, and the one that worked for both of us. EM listened graciously and was very accepting and understanding.

Sometimes depression can leave you feeling like you do not deserve enjoyment, let alone trying new experiences. Throughout our discussion, I told EM of the many things I had missed out on due to my depression. I had never tried sushi or Thai food, for example. A few days later, I received a text from her.  EM suggested that the next time we got together, we would go for sushi – so thoughtful. We did, and I liked it. But then, two days later, we went for Thai food. Now that I really liked! It has become a regular for us. It is wonderful to know that more firsts will follow.

EM even joined me one evening at Acadia University to hear me present on “How I Returned to a Life Worth Living” as Acadia launched their Mental Health Awareness Week. Now that was a special time.

Given the years of darkness in which I dwelled, to be able to work, to attend a concert, to share life with EM, all are such wonderful things to me. I can truly appreciate and embrace such life events now. Yes, even having sushi for the first time was a special life event – even more so because I had someone with whom to share it.

So, my journey continues. But I think it has changed. It is no longer just journey through depression, but a journey through life.

 

Keith Anderson is a lawyer and mental health advocate. He has been a Bring Change 2 Mind volunteer since December, 2009.  He has had articles on his journey through depression appear in the National Post newspaper and  publications of the Canadian Bar Association and the American Bar Association. Keith has presented at national conferences and at local events in his native Canada. He sees stigma that is too often inflicted on so many people with mental illness as a form of discrimination, a human rights issue. Keith continues to return to a life worth living by still experiencing new things, such as recently eating sushi for the first time and enjoying it!

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Lobbying in DC

The Excellence in Mental Health Act is one of the most important Acts written to try to help our country’s mentally ill. If lobbying is rushing around to speak to as many as possible, well… we did it!

The first impression that struck me when I was in D.C. at the Capitol was how much better the politicians look on TV! I think they should wear their TV makeup all the time and someone should hand out Tic Tacs. I won’t reveal names but I wonder how many votes are lost to halitosis. So, those being the first impressions, the rest of the visit was great.

Glenn, Calen and I were in D.C. to receive recognition from Research! America but ended up lobbying for mental health, specifically for a program called the Excellence in Mental Health Act sponsored by Senator Debbie Stabenow. Eight states will be chosen for a pilot program.  This program would pick up where Ronald Reagan’s program ended. He closed hundreds of mental health facilities with the intention to open state facilities where none existed. But these facilities were never built. If you’ve ever wondered why there are so many mentally ill on our streets, remember Reagan and how he jumped the gun to kick the mentally ill out of their facilities before the state clinics were built.

I had never been in the tunnels that run under the streets and up into our Capital buildings and was quite amazed by them.  We got to ride in the little train that runs through the tunnels and I felt like I was at Disneyland.  As soon as voting began no one was allowed on the train but Congressmen/women.  So we walked and walked and WALKED!!!  Luckily, I was wearing my TOM’S tiger print shoes and my feet stayed blister free.  What really got to me in a serious way, and forced me inward, was the noise! The halls echoed with literally hundreds of voices and the thousands of footsteps drowned out my own thoughts. It was all I could do to stop myself from fleeing the building. Usually, when I feel like I have to get away from noise or just feel uncomfortable around people, I find a Ladies Room. That was not happening here. We were escorted here and there and everywhere at such a fast pace I wouldn’t have had time for a pit stop say nothing of just a stop to escape reality!

The last and maybe the most important room we were ushered into was beautiful with a very long table taking up the center. This was Representative Dave Camp’s territory. He heads up the Ways and Means Committee. He greeted us then sat and listened while we told him how important the Excellence in Mental Health Act is for all of us. We talked about how fortunate Calen and I are to come from a family who got us the best care and that excellent care is what needs to be available to everyone and that’s what we’re fighting for.

So, my first lesson in lobbying was exciting, uncomfortable, eye-opening, fascinating.  I have a feeling that the noise has always been there in those rooms, in the tunnels too, even in the very beginning of this wonderful country of ours. They are the sounds of trying to get something done.  The Excellence in Mental Health Act is one of the most important Acts written to try to help our country’s mentally ill. If lobbying is rushing around to speak to as many as possible, well… we did it! The Three Musketeers on the Hill! All I know is 30 years after Reagan we’re still trying to get those state clinics for the mentally ill going.

Then yesterday we heard that the Act had PASSED!!! We also heard that Rep. Camp was impressed with Calen!!! Go Calen! Rep. Camp was inspired by the fact that Calen is married, that he was there in D.C. to promote the Act, that he’s a working artist, that he is well spoken, that there’s nothing about him that “looks” mentally ill.

Calen has come such a long way. He talks below:
I’m glad that there are so many dedicated advocates for mental health among our leaders. I’m even more impressed by their recent victory, passing the “Exellence in Mental Health Care Act”.

When I lost my mind I became scared of everything, experiencing the kind of fear that simply dominated.  Fear was the most powerful force behind my psychosis, or as I sometimes explain it, free association of ideas and experiences resulting in abstraction of thought.

Now imagine being that scared, then being locked into a ward.  Imprisoned, although for only several weeks, by those who only seem to be interested in what is going on in your chaotic mind.

I know that the facility I signed myself into was of relatively high standards, but it still had a feeling of sterility and coldness.  To give an idea of the conditions some with mental illness face, just know that the largest mental health facilities in our states are federal prisons.

I’m excited to see what can be done to the system with increased funding.  More people will be able to get help to work on themselves and hopefully recover to the point of attaining happiness.

So I, for one, say to our leaders  “ Thanks for all the hard work and for agreeing to help so many”.

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Highwire

I nervously explained my diagnosis to her, and she listened without judgement. I told her that I needed help navigating their system, and that logistics were not my forte. After pushing through my expectations and past the annoyance of my constant self-stigma, a miracle of sorts occurred. We were talking. Really talking.

“Good morning and thank you for calling the Faceless Medical Conglomerate. My name is Ubiquitous and I’ll be rushing you through the Elephantine Health Care System with an overload of data, industry buzzwords, and an aloof detachment meant to put you off your guard, making this call quicker, and my coffee break that much closer. Please state the last four digits of your Social.”

Prepared to discourage another deadbeat from bilking the system, Ubiquitous was taken aback when she realized that she had an advocate on the line – an individual aware of his mental illness, educated in its symptoms, and willing to go toe-to-toe with Big Business. That was the story in my head at any rate. What really happened was that alogia – the disruptive break between my thought processes and my speech – kayoed the conversation, and we both experienced the stilted cadence of paranoid frustration hogging the limelight. I call it the Clown Car.

How many cream pies of confusion and chaos can these Cerebral Comedians cast at my consciousness? On a good day it’s more than I’m willing to handle; on a bad day, it’s the Circus of Doom. Floating skulls, flaming bats, and every negative notion my illness can conjure, get crammed into a vehicle the size of a grapefruit, commonly referred to as my brain. But today I decided things were going to be different. I would work the trapeze with dignity and grace. I would be responsible for starting the conversation.

When I’m meeting someone for the first time, schizophrenia can turn me into a broken Furby. Nothing I say makes any sense. The chip for mimicry fails and I’m out there freezing my face off on a raft just left of the Titanic. I’m like an alien armed with a “Speak & Spell” playing Simon Says with the cat. My solution? Since I know that I’m better at writing than I am at cold- calling, I take a little time beforehand to jot down my questions and concerns. Then I can begin with those talking points in place. It’s not easy, but I do it because it works. Try it yourself. Build trust. Be brave. Be authentic. Tell the truth. That is the definition of advocacy, the path to creating and promoting support.

I’ll admit that I went into this with some expectations based on previous dealings with business people. They seem dismissive, and often reject the mentally ill out of hand. A little stigma goes a long way, especially the self- deprecating kind. So I steeled myself for the anticipated brush-off and the rapid-fire string of useless phone numbers, certain that I would be jettisoned into the audio void of perky infomercials and bad jazz. To my surprise, something unexpected happened: Ubiquitous listened.

She listened patiently as I told her that this was my first time talking to the medical services company assigned to assist me with my health care. She waited as I struggled to silence the Clowns; she gave me space to step away from their Car. I kept trying to get the words right, and she encouraged me to stick with it. I nervously explained my diagnosis to her, and she listened without judgement. I told her that I needed help navigating their system, and that logistics were not my forte. After pushing through my expectations and past the annoyance of my constant self-stigma, a miracle of sorts occurred. We were talking. Really talking.

Her name was Helen, and she wasn’t robotic at all. She was courteous and friendly, compassionate and understanding. There was a moment when I was trying so hard to communicate through my illness that I started to cry, and I could hear Helen on the other end choking back tears of her own. This was a real person, a friend.

There are people like Helen all over the world. They are there to help, but they need to hear it from us first; they aren’t mind readers. Our job is to set aside our own personal demons for the short time it takes to allow the Helens in. We need to let them see the person behind the illness, and they’ll respond accordingly. They will help us get the seemingly impossible accomplished.

She guided me through the proper sequence of questions designed to assist newcomers. My stammer leveled out along with my confidence. I even managed to say something funny. We shared a laugh. We connected. Of course, it took patience on her side and courage on mine, but together we stopped discrimination and stigma in its tracks. If only for that afternoon, we were changing the world, not just for one, but for the ones that follow. A chain reaction. A “change” reaction. The greatest show on earth.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Birth

A visual and tangible scene of life has been played out for my family. Baby being born, and all the drama of that scene and her great-grandmother, nearing the end, reminiscing to whoever wants to sit and listen, about her long and adventurous life. We took a bundle of photos when Phoenix met her great-grandmother.

My daughter, Mattie, gave birth to my very first grandchild, Phoenix, on Monday, March 3rd.  Becoming a grandmother comes with a learning curve, like becoming a parent in the first place.  Seeing my daughter in pain sent me into a panic and I questioned the midwives, wondering if they knew what they were doing. They did know and they asked me to stop being so nervous. And then, all of a sudden, there she was, on my daughter’s chest, my grandgirl, a miracle!

I’ve been surprised by how little I am needed these first few weeks. Baby eats, sleeps, poops, pees, eats, sleeps, poops, pees…  She’ll be two weeks old soon, (March 17th) and I’m so in love and looking forward to the days I can spend with her, just us.

Now it’s days later and the other end of our family is needing attention. My mother, age 90 on March 28th, is in the hospital. I live a three-hour drive away and am here at the hospital now. Many of us from our family have traveled to be with Mom and she, as usual, has been laughing and reminiscing with us as we gather in her room at St. John’s Hospital.  We’ve tried to schedule our visits so we’re not all in her room at the same time but, inevitably, end up crammed in all together. I can only say this is so because we love being with her.

A visual and tangible scene of life has been played out for my family. Baby being born, and all the drama of that scene and her great-grandmother, nearing the end, reminiscing to whoever wants to sit and listen, about her long and adventurous life. We took a bundle of photos when Phoenix met her great-grandmother. No one had to say out loud that this might be the only time Phoenix meets her. My mom started crying when she was holding Phoenix and said, “Now I feel my life is worth while!” She knows that her family will survive, at least for one more generation, with this precious little person.

I have conflicting emotions surrounding taking pictures at family gatherings. Sometimes I just can’t stand all the cameras going off at the same time and think we’re not really immersing ourselves in these wonderful moments. But then, looking back on the photos, we are allowed to relive the moments. One photo I want from the encounter of young and old today is the photo of Phoenix gripping one of Mom’s old index fingers with her excruciatingly small, new fingers. Mom was mesmerized by the sight and began crying again. What a magical photo that will be!

Phoenix has a lot of hair and it’s auburn like my mom’s was when she was young. Coppery, warm auburn. I know I’m reading too much into this but it is curious, that Mom’s first and only great-grandchild is born with auburn hair. Most of us are blonde, no one got auburn like teeny-weenie Phoenix.

Mattie has returned home with Charlie and their magical Phoenix. I’m about to go back to the hospital. I hope the doctors can wield some magic so Mom can have a while longer. We’ll see. Please send prayers.

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Only the Lonely

It’s up to us to speak our truths and become a part of something bigger. We need to be seen and we want to be heard. We are not ciphers, cute off-the- wall characters in a situation comedy, or newspaper buzzwords when reporters get hasty. We are not punchlines. Mental illness is no laughing matter.

There’s a joke that goes, “You’re never alone with a schizophrenic,” based on the mistaken belief that having schizophrenia is the same as having a split personality. It’s not. That would be dissociative identity disorder, a rare psychological condition defined by distinct and recurring alternating personality states which control one’s behavior. To clarify: schizophrenia is a chronic and debilitating mental disorder characterized by a breakdown in thinking which significantly impairs an individual’s thought processes. The ability to assess one’s surroundings and to interact with others becomes distorted. Isolation gets to be run-of-the-mill. This is not by choice. This is the illness. It is a lonely place.

Two months ago I attempted suicide. I suffered through a psychotic break, resulting in emergency medical intervention. I’d hoped that my symptoms had abated, but they seem to have left a vapor trail. Residual audio and visual hallucinations persist. I find myself preoccupied with them. I feel ashamed for not recovering sooner. I’m confused and haunted. When questioned, I act as if nothing ever happened. It’s not denial, it’s more like a memory wipe. In psychiatric terms, I am experiencing post-psychotic depression. With an unusual side-effect: I came to believe that I had no friends.

I approached the idea in much the same way that one might act on the notion of Spring Cleaning. I removed numbers from my phone, and I purged my friends list. I was getting things done and it felt good because getting things done always feels good. There’s that sense of completion and renewal. By actively eliminating all those names, I believed I was getting mentally fit. These were just names, after all, and how can a name be a friend? It’s random letters strung together. Meaningless. Without caller ID my phone was a brick. My newsfeed cruised without memes and cat pics. Cleaned out, like the closet. No mismatched socks or tatty jeans. Orderly. Like the hospital.

Days passed. The phone would ring and I would ignore it. A jumble of unfamiliar numbers. A text from the Twilight Zone. I could exercise or write or play guitar or paint, and nothing and no one was there to bother me. Something felt off, but I couldn’t put my finger on it. I started not sleeping again. I skipped my therapy sessions. I found myself living in a ghost town. I only jogged on days when it was pouring down rain to avoid seeing people at the track. The Brother From Another Planet had become The Boy In The Bubble. I wondered if I was lonely, but I knew that wasn’t possible.

Because you’re never alone with a schizophrenic.

If there’s an art to living with a mental illness it’s learning to ignore the dismissive paint-by-number forgeries hung by ignorance and prejudice as truth. Like in that movie where everyone laughs at the quiet girl with her Goth tapes and black lipstick. At the anorexic geek with his comic books and action figures. At the stressed-out veteran experiencing flashbacks. The bag-lady talking to shadows. Depression, anxiety, trauma, psychosis. You laugh along with the audience because you want to blend in, but it hits too close to home. It’s wrong to laugh, and you know it. You know it because it hurts. Something needs to change. That change begins with you.

It starts with an honest conversation. It continues with active listening. Speak to the words between the words, and to the ones tucked in behind them. Listen to the words that no one will dance with, to the words that never get a goodnight kiss. It really is a two-way street. This is how the conversation starts, and this is where the healing begins. A glass pressed up to the adjacent wall, listening intently for signs of life. Who is in there, and how do we get to know them better? Our words are the trail of breadcrumbs we follow to get out of the forest of loneliness.

It’s up to us to speak our truths and become a part of something bigger. We need to be seen and we want to be heard. We are not ciphers, cute off-the- wall characters in a situation comedy, or newspaper buzzwords when reporters get hasty. We are not punchlines. Mental illness is no laughing matter.

Confronting the stigma head-on, it would be more accurate to say, “You are always alone if you have schizophrenia.” But I tell you what: I am resolved to make – and keep – every friend that I can, no matter how many times I need to humble myself and surrender to the fact that I live a life in a world that no one else can understand. That is, until I start the conversation.

 

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Snowed In

How very strange that we in Montana have endured less snow than those of you in the east. But we’ve had snow too. Enough snow! Especially snow with a side of melancholy. But sometimes things are funny!

How very strange that we in Montana have endured less snow than those of you in the east.  But we’ve had snow too. Enough snow!  Especially snow with a side of melancholy. But sometimes things are funny!

About ten days ago I had to have my truck pulled out of my driveway as I thought I could drive in, but couldn’t, and got stuck.  So my truck was parked on the side of the road and I was completely snowed in behind my dog fencing. I had to get down to Wyoming to see my mom. I had to load up my dogs and luggage to be away for a week. I couldn’t budge the gate that was trapped in ice. I spotted the top of the fence just poking out about five inches on the north side and thought to myself that I could walk over the snow and easily step over that part of the fence. Wrong! On the way over I sank into about four feet of snow. But I reached the fence and threw my luggage over, then picked up each of my dogs and placed them in the snow on the other side of the fence. Rosco, my exuberant Rat Terrier, immediately jumped back over the fence to be on my side; I put him back over and, I must admit, yelled at him to stay put. So, that’s luggage and four dogs all on the side of the fence where we needed to be. I finally heaved myself over and face planted in the deep snow. We all struggled to get to my truck but finally made it! I’ve owned this place for 18 years and I have never ever seen so much snow!

It’s a seven hour drive to where my mom lives, the road cutting from Montana to Idaho to Wyoming. It’s beautiful but when the roads are bad it’s very scary. Someone was looking out for me because the roads were good.  Even when I drove back the roads were good. So here I am, back in my house, far away from my mom again, not feeling great about anything. Can I blame the snow? My pipes almost burst in my absence and if it wasn’t for my neighbors they would have. But that’s all part of winter, right? Unfortunately yes.

Now that I’m home melancholy has taken me over. We’re expecting another cold snap. One of my dogs, Woofie, has developed a bum knee and can’t use one hind leg or the doggie door. But more than anything, I’m anxious about my mom. She’ll be 90 at the end of March. My first grandbaby, her first great-grandbaby, will be born in the middle of March. I just want to know that Mom will meet this new little person before she goes. I think I might be using grandbaby to keep Mom on this earth, insisting that she wait for the birth. I can’t imagine life without my mom in it. I know this is true for my siblings also. We’ll all gather together at the end of March to give Mom a happy 90th.

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Phoenix

You know your illness - get to know it better. Don’t let the stigma associated with it blindside you or drop you to the pavement. Fight back with the aid of your doctor and your therapist, your medication, your family and your friends. Above all, do not be ashamed of who you are. You’re a beautiful human being and you deserve to be recognized as such. Spread your wings and soar.

A few years ago, a random act of violence landed me in the hospital as a John Doe, and worse yet, pronounced Dead On Arrival. I had been mugged by three assailants, and left to die outside the ferry terminal. Had it not been for a passerby alerting the Port Authority, I might have bleed out alone on a dirty sidewalk. Instead, I was rushed to the ER where an orderly noticed that my hand was twitching and that this particular “corpse” wasn’t ready to meet his Maker just yet.

Flashes of overhead lights, masks, tubing, and an obnoxious, steady beeping in the corner of the otherwise silent room, kept me occupied for the three days that I drifted in and out of consciousness. My only guest was my brother who was studying to get his PhD in physical education. He sat by my side reading his medical textbooks aloud to keep my mind occupied until I came to. When I finally awoke, I asked him where he’d found such a boring novel. Our sense of humor always got us through the worst of times.

I was released back into the world with multiple stitches in my face, nose, and mouth, bandages around my cracked ribs, a compress over my right eye and cracked cheekbone. The pain was made bearable by a month-long prescription of oral morphine. Not as strong a medication as the drip administered to me in the hospital, yet every bit as effective in helping me manage the symptoms of pain. One unexpected side effect was the sense of fearlessness that I began to notice after the first couple of weeks.

While I had experienced psychosis, delusions, and broken memory, I was yet undiagnosed for my schizophrenia. As an artist, eccentric behavior was practically expected of me, so I had no reason to suspect that living in a constant state of fear was anything other than reasonable. After all, if I lived in a metropolitan city where I could be mugged for laughs by wannabe gangsters, why shouldn’t I be in a constantly heightened state of vigilance? I had died and been reborn. I was a Phoenix – triumphant and unafraid.

I enjoyed the sensation so much that I used my artistic talents at the printer’s shop to reproduce my scrip, forge the doctor’s signature, and keep my supply running throughout the summer. The bandages came off, the scars began to heal, but the recurring traumatic stress fractures in my psyche complicated matters whenever the morphine would wear off. The cycle became aggressive: dose up, chill out, not a care in the world; paranoia, effectiveness waning? – pill me. The lie I told myself was that this was The Best Thing For Me. I was wrong, and I knew it. I thought I was invincible, a modern-day superhero … in my room. In front of the TV, lights out, isolated, ashamed. And somehow still riddled with fear.

My doctor brother saw the warning signs and got right on it. We went to a clinic to ween me off the meds. He took me to see a counselor who talked with me about my mugging, and helped me see into the workings of the mind behind PTSD. It would be years before I would tackle the bigger picture on my own, but it was a start. From the ashes of the terror of being brutally beaten and left for dead, to a young person willing to face his fears head-on for the first time in his life, I arose not as one the Living Dead, but as one who had faced death and survived. I owed my newfound freedom to my brother for helping to redirect my intentions, and to the experience itself that had brought me to the edge and back.

Since then I have lost my friends, my dignity, and my self-worth, to the ravages of schizophrenia, a single entity more powerful than any three random muggers. I learned from my past that I could seek help and find treatment if I just shared my story – the real story – honestly and without the shame of self-stigma.

With the dedicated relationship that I share with my therapist of five years, I have begun to rebuild my lost life. Two psychiatrists further defined my diagnosis, which I research daily in my quest for the truth about my mental illness and strategies for maintenance. Upon first meeting, people have used negative and/or dismissive words like “crazy,” “withdrawn,” and “incoherent,” to describe me, but once they’ve heard my story, they use words like “honest,” “engaging,” and “brave.”

You know your illness – get to know it better. Don’t let the stigma associated with it blindside you or drop you to the pavement. Fight back with the aid of your doctor and your therapist, your medication, your family and your friends. Above all, do not be ashamed of who you are. You’re a beautiful human being and you deserve to be recognized as such. Spread your wings and soar.

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I Know What I Know

by
I once read that each person who lives with Major Depression has his or her own brand. I gave that some thought and wondered if anyone else with a form of mental illness ever daydreams about abnormal ways to get rid of their symptoms like I do.

I picture a tiny hole drilled into my head, two inches or so above my right ear, piercing through my skull, forming a perfectly sized aperture to implant a spout, much like the ones used in Vermont Maple trees to collect sap for making syrup.  Once inserted and locked in place, I open the spigot and feel the satisfying release of sticky sludge running through the grooves of my brain, seeping out from the hole in my head, landing in a tin bucket resting at my feet.

If only a procedure like this one really existed – a cleansing of the brain, where all of the cerebral sewage would be emptied out, washed away like grime from a clogged kitchen sink, perhaps my life with depression would be a heck of a lot easier. When a bout of depression marches in without warning, whacky ideas for unconventional remedies automatically start to formulate in my head. None of these quirky inventions make medical sense, but that’s what my desperate mind does to survive. We all know there’s no instant cure for depression, however it’s remarkable how wild my imagination can run when I know I’m in for a long battle.

There was a point several years ago when I lost all hope of ever getting better. It was a depression so fierce that it clouded my every thought and action. My meds stopped working, therapy wasn’t helping and I was convinced that I’d be trapped in the claws of despair for eternity. I started to obsessively research ways of getting a blood transfusion. I envisioned that the substance running through my veins was not blood, but a thick, poisonous liquid. I thought if I could rid my body of this venomous fluid and start fresh with blood from a non-depressed person, there might be a chance that I’d be cured. When I presented this ingenious idea to my doctor, he cut me off at “transfu…”

Okay, no transfusion – my medieval remedy proved to be a very frustrating setback. Determined to survive, I became adamant about finding a place, not a psychiatric hospital, nor a rehab center, but a welcoming resort, a Club Med(ication) where individuals with depression can go for a month or two, to get away from it all. I imagined a Fantasy Island for all the morose and melancholic people just like me, desperate to regain their lives back, to find a twinkle of hope. Sadly, after too many late-night Internet searches for Prozac Paradise or Zoloft Zen, I couldn’t find one place that allowed dogs.

I once read that each person who lives with Major Depression has his or her own brand. I gave that some thought and wondered if anyone else with a form of mental illness ever daydreams about abnormal ways to get rid of their symptoms like I do. It’s embarrassing to admit, but through the years, I’ve devised dozens of imaginary products – one of them is Drano for the brain, or Braino. It’s an antidepressant that you drink while hanging upside down. The super strength liquid goes straight to your head instead of your stomach, leaving your brain crystal clean with a sparkly shine. Why do you think Mr. Clean is always smiling?

Sometimes the only way for me to make it through a rough patch is to laugh, even at my own expense. When I’m in a bad way, having a sense of humor seems impossible. I don’t want to talk to anyone. I become withdrawn, inclined to cancel plans, close the door on life and only resurface when I’m ready. Apparently having deranged thoughts and concepts are part of what makes my particular brand of depression a tad peculiar. As I mentioned earlier, it’s a survival instinct. It may be warped, but it certainly keeps me amused.

 

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Meds

There is an incredible amount of stigma regarding anti-psychotic medications and unfortunately, the majority of America would automatically associate these types of medications with what they see in crime movies involving “mad houses.” However, to joke about something like this…to be quite honest, it offended me.

Recently I got my second job working at a grocery store as a cashier.  That’s right, I learn to cooperate with those who come through my line that are cranky, happy, and experiencing the in-between mood. It was my second night on the job and I was exhausted from the stress of learning something completely new to me. I was truly hoping for one of those “happy” customers.

A man and a woman who appeared to be a decent couple were my next customers. Luckily for me, I can tell very easily how a customer is feeling before I even talk to them. They were “happy.”  I kindly greeted them and began scanning the items on the belt.

After scanning some of their groceries, I noticed the man holding a bag of prescriptions in his hand. Our pharmacy department would normally handle this, but unfortunately we live in a world where people easily take advantage of the system.  Making sure he had paid for his prescriptions, I made eye contact with him and waited for a response.

“Oh don’t worry I paid for them!” he said.

I acknowledged him with a smile and “ok” and then saw the receipt stapled to the white paper bag. I continued scanning the remaining items on the belt.  I did appreciate his willingness to prove that he had paid for his prescriptions.  Some customers aren’t so willing and get easily offended if you think that they are trying to steal from the store.

Then he said something I wasn’t quite prepared for.

“I don’t want you to think I was stealing all of those anti-psychotics I take…because you know, I am crazy like the rest of them.”

I could tell he wasn’t serious, though on the inside I was facing a major moral dilemma on whether or not I should defend not only me, but the others who take anti-psychotic medications as well. There is an incredible amount of stigma regarding anti-psychotic medications and unfortunately, the majority of America would automatically associate these types of medications with what they see in crime movies involving “mad houses.” However, to joke about something like this…to be quite honest, it offended me.

I was facing a hard decision. Should I say something to him? I had to defend myself somehow right? Didn’t he know whom he was talking to? Maybe if he did, he wouldn’t have said it in the first place…these thoughts ran rampant through my mind.

I was thinking very hard about this statement, but I was also trying to not take things too seriously like my mother often tells me. The woman must have noticed me in deep thought and said to me,“Oh, don’t mind him, he doesn’t know what he’s saying!”

It was almost like she knew what I was thinking about but didn’t want to say it because she didn’t know me. Or maybe she too was afraid of being honest about mental illness.  I looked at her nodded with a smile and shortly after this comment, they paid for their groceries and off they went out the door.

I would probably never see them again.

Then the realization hit me.  I just played the game that many of you play every day- I had just given into the stigma associated with my illness and my conscience was significantly taking a toll on me.  I felt like the man had just gotten away with it. Now it wasn’t a crime by any means; however, I felt almost ashamed of myself for “letting it go.” I had missed an opportunity to help someone understand- maybe not completely, but enough to not go around saying those types of things to people.

We, the “mentally ill” have a lot of knowledge about our situations whether you realize it or not. Though, for some reason we don’t share it because we are afraid.  In my situation that night, I was afraid I could lose my new job after having worked so hard to get it.  And if by chance I had spoken up, I could face discrimination not only from him, but from my co-workers as well. He could have gone to the manager and then what? Besides, what did I know? I was just a young kid being too smart for my own good.

These thoughts then reminded me of a conversation I once had with a dear friend of mine. We were talking about education and she brought up the fact that all she had in her mind was “useless information that no one cares about.”

In my opinion, the only useless knowledge that exists is that which is not shared.

Looking back, maybe I should have said something…then maybe I think I did the right thing by keeping my mouth shut.  It is a difficult situation for any of us to be in and in reality I know that both you and I will find ourselves again in a similar circumstance.

The truth is, I should have said something.  Not necessarily about me, but maybe I could have helped him understand the stigmas associated with our illness. My advice to all of you is this- if you ever feel like what you know is useless and not worth sharing, think again.  You can be the change. Young or old, remember that all “useless knowledge” is only useless when it is not shared. You can go through life having lost everything, but nothing will ever take away your experience and what you can do with it.

Lauren is a college freshman and first became involved with Bring Change 2 Mind as a high school student when she became the youngest walk captain in our national program. Having personal experience with mental illness has helped her to gain a greater perspective on the world around her. Lauren looks at her illness as an opportunity to help others understand those who live with mental illness as well. It is her personal mission as a young person to do all that she can to help eradicate the stigma.

 

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Crazy Little Thing

I ardently promote the idea that love connects us all. Familial love, the love between friends, a general sense of love for the world - it brings us together in our quest for sound mental health and a stable sense of belonging. Love is that big box of everything good about Homo sapiens. At our best, human beings are sentient creatures whose sole purpose is to love.

I ardently promote the idea that love connects us all. Familial love, the love between friends, a general sense of love for the world – it brings us together in our quest for sound mental health and a stable sense of belonging. Love is that big box of everything good about Homo sapiens. At our best, human beings are sentient creatures whose sole purpose is to love.

It’s a many splendored thing. It’s all around. It’s all you need. Puppy love, same love, higher love. It’s the greatest love of all. It’s a groovy kind of love. Love will keep us together – that’s the power of love. Real love. Big love. What’s love got to do with it? Love is the answer.

You don’t have to take my word for it. Centuries before the greeting card Casanovas seduced us with red lace and chocolates, it was randy Brit wordsmith Geoffrey Chaucer, who, with his epic poem “The Parliament of Foules”, turned the Greco-Roman February mash-up into a hi-def holiday superstar. So before you settle in for a night of rom-com rentals and shovelfuls of cherry-ripple-fudge, set aside any contempt prior to investigation and let Science offer its empirical Valentine: love is in our genes.

There’s a charming little neuro-hypophysial hormone called oxytocin whose primary job (in the most simplistic terms) is to regulate the electrically excitable cells in the brain. Oxytocin is known to effect numerous emotional responses and social behaviors, even improving one’s psychological perceptions. And although this may sound like a videogame reference, once it passes through the Seven-Transmembrane Domain Receptors, oxytocin’s peripheral actions can include trust building, altruism, empathy, and, remarkably, improved memory for happy faces.

Romantic attachment, sexual arousal, pair bonding, and initiation of maternal instincts are all behavioral effects considered to be directly linked to the influence of oxytocin. What’s more, it appears to protect against anxiety, stress, and fear, eliciting feelings of security and contentment. While it has other more varied and complex duties to perform, enriching our social interactions has earned oxytocin it’s nickname, “The Love Hormone”.

So with all of that Science to back me up, why am I still single?

Well, in addition to the overabundant levels of dopamine – that neurotransmitter responsible for motivation and expression in my multicolored grey matter – there appears to be a sizable deficit of oxytocin, directly relatable to the negative symptoms of schizophrenia: isolation, social withdrawal, and flattened or blunted affect. In situations which, to a normal person, might seem wholly exciting or sad, I get to be on the other side of the looking glass – watching and wishing but never quite belonging.

The excess of dopamine in my limbic system effects my ability to comprehend language nuances accurately; the lowered levels of oxytocin impair my ability to understand social cues. When I’m nervous, the result is often a blank face, word salad, or both. Confusing for everyone involved.

For instance, I recently found myself butterfly-tummied in the presence of The Most Beautiful Barista in Coffee Town. I had every intention of complimenting her, but inadvertently, albeit sincerely, blurted, “Tiara’s sparkle like snow motion cacti.” What could have been the most adorable meet-cute in the history of cafe romance was sabotaged by my mental illness. She stared right through me. I was the Schizo in Wonderland. I tried to apologize for being abstruse. Words tumbled out of my mouth like miniature Scrabble tiles, rearranging themselves to read “Thank you Henry, but your Princess is in another castle.”

Schizophrenia’s negative symptoms can sometimes create relationship challenges. Family members might assume that I’m being aloof, when in fact I am longing to be included. Friends may perceive a one-sided tête-à- tête, while I’m convinced that we’re chatting fifty-fifty. My respect for a lover comes straight from the heart, but my mix-tapes sound like dust bunnies on the moon. I’ve had but three awkward dates in the past eight years. Each woman only wanted to know if my best friend was single and available. Ever the gentleman, I paid for tea and cookies so that they could have his number. Which is not a bad thing at all. Call me Cupid.

Every week, every session, I run my List of Reasons Why I’m Single past my therapist: I’m fat, old, ugly, poor, and crazy. So we talk about my eating disorder. She reminds me that age is relative, that looks are subjective. It’s true that I’m on disability and that I live with a mental illness. It’s also true that I’m a person and I’m worth knowing. There is more here than meets the eye. So I’m not giving up just yet. The List is not the Truth. Hurdles are just hurdles. You can’t hurry love.

 

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Bump in the Road

People have held the assumption of me that because I am a huge advocate for mental health awareness and de-stigmatization, that I have to be “all better,” or else I can’t promote the way I do. However, I never want to appear as if I’m “all better” and promote the “I got through it and so can you” type story. As many others out there, my mental illness is a work in progress too.

It’s weird, yet comforting at the same time to be back in a controlled environment. It happened so fast that it’s almost like trying to put together a million scattered puzzle pieces of “memory” across my already seemingly dilapidated mind.  I was spinning out of control.

Deep down I didn’t want to die; however, it was a feeling. Disappointment loomed and had buried itself deep within my chemically induced mind.  My psychiatrist refers to it as my “reflection mood.” I had been focusing too much on the previous events that led up to my feeling the way I did.  I was thinking about all the relationships or friendships that had gone wrong in my last five months at college…all because of my doing of course.  Or maybe it wasn’t my fault. Maybe I was being paranoid, but I didn’t think so. I couldn’t think so.  The thought of having “ruined everything” continuously raced throughout my mind and there seemed to be no way out.

I’m here again.

I was in the emergency room for six hours waiting to be placed in a room up on what’s called 6 North. I was your case of bottled up emotions gone horrifyingly wrong that had led me up to my suicidal thinking.  I hadn’t attempted anything, though the thought of dying ran heavily through my veins and it wouldn’t escape from my mind.

I didn’t sleep that night.

The next day the doctor and his resident interviewed me- a get to know you entirely session for forty five minutes.  They asked me the typical questions- my family history, why I had come here, and about my relationships with other people.  In that short time, a new diagnosis was mentioned- Borderline Personality Disorder. Though they weren’t “positive” about this diagnosis, the thought of being labeled again made me angry. When would someone get it right?  What was really “wrong” with me? And would I ever feel better again?

People will ask me what my illness is, and to be quite honest, I really don’t know the correct term. But how can I if we have become obsessed with labeling and curing the unnatural symptom? In today’s world, we feel comforted when we get diagnosed. Although not always good news, we get that sense of relief from a professional,  “everything is going to be okay now” and “we can calm down.” We are a society based solely on the belief that “doctor knows best.”

I was in for three days.  Not necessarily your “average” stay of five to seven days, but enough to get you thinking somewhat back to your old ways again. During my journey, I must say that I have probably met some of the most amazing people I will ever meet in my life.  I think back to my last stay and wonder how the other individuals that I met are doing.  You become so close because you automatically understand the lifestyle of living with something that you can’t always control.  It’s a secret club that anyone can join.

I have to admit that I am nervous as I write this blog.  People have held the assumption of me that because I am a huge advocate for mental health awareness and de-stigmatization, that I have to be “all better,” or else I can’t promote the way I do.  However, I never want to appear as if I’m “all better” and promote the “I got through it and so can you” type story.  As many others out there, my mental illness is a work in progress too.

Because of my recent bump-in-the-road, I, along with my parents, made the decision that it would be best for me to commute to and from college and live at home for the rest of the semester.  At times I get angry at myself and think, “why can other people my age do it and I can’t?” I remember then that I am just who I am meant to be…a fighter.

 

Lauren is a college freshman and first became involved with Bring Change 2 Mind as a high school student when she became the youngest walk captain in our national program. Having personal experience with mental illness has helped her to gain a greater perspective on the world around her. Lauren looks at her illness as an opportunity to help others understand those who live with mental illness as well. It is her personal mission as a young person to do all that she can to help eradicate the stigma.

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Wednesday

I’m alive because people care. I’m alive because there are trained professionals who do what it takes. I am alive because, regardless of the Voices and Suggestions, I found a way to follow my plan. I reached out when I needed help, when I knew that my illness wanted to kill me, and it failed because I didn’t. I survived because I fought back, and I did so in the ways designed by my doctor and my team and me.

My heart stopped. It restarted. It hurt like hell. But this was what I wanted. Without the jump-start.

I’d lost eight pounds in three days. I could lose more. I wouldn’t stop until I was dead. That was the Suggestion, and I believed it. With all my heart. The one that’d just kicked me like an angry mule.

I didn’t need anyone. I didn’t need me. My friends weren’t friends, they were acquaintances. Less than that, they were replacements. The Voices knew this, so I knew this. Months ago they began their campaign.

I had decided to champion for myself and to share this advocacy with others. Self-esteem and a purpose, that’s what I had. I was reaching out, but the Voices reached further. They replaced my friends with Replicants. They put cameras and tracking devices on every path I travelled. I was under surveillance around the clock – trapped. But I found a way out: I would starve myself. I didn’t see that I was playing into their hands. How could I? I was following my treatment plan. I was starting the conversation. I was practicing mental wellness.

My. Heart. Stopped.

I found a bench in the park a few feet in front of me. Replicants were everywhere. They watched me cry, they listened to me scream. I called my therapist while the robots took notes. I called my best friend while they pointed and laughed. Look at the crazy person talking to himself, the one wearing three sets of clothes and sunglasses in the rain.

There were sirens. There was a firetruck. Two squad cars. An ambulance. There was a lake in the park. I could run. I could drown. I’d been betrayed. There was no love in the world. Only hatred and fear. Of the crazy person surrounded by police and EMTs.

“I’m not violent. I’m not hurting anyone. I have schizophrenia. My heart stopped.”

His face was my view. His eyes pierced my soul. “Look at me, son. Breathe. Can you breathe with me? Slowly: in…and out. That’s good.”

“Please don’t restrain me. You don’t understand. These people aren’t real. My heart stopped.”

“Breathe, son.” Gentle giant. Big face. “Breathe. Slowly. In…and out.” Eighteen first-responders. Sentries. Poised strategically to contain the tiny crazy person shivering in the rain, surrounded by on-lookers, pedestrians, joggers – Replicants all. “We’re going to move you to the stretcher now. Can you walk with me, son?”

“I’m not violent. Please don’t drug me. It’s not my fault. Please let me have my arms. Let my arms be free, please.”

Strapped to the gurney, into the ambulance. Something in my arm. Sleepy. Driving to a secret government location. Cameras. Replicants. Suggestions. Name, date of birth, occupation. “Writer. I advocate for change. I’m under surveillance for speaking out.”

Hallway. Orderly. Alone. Contained. Beeping. Blood draw. Monitors. Curtain. Warm blankets. Paper dress. Sleepy. Out.

Wake up. “Hello, Henry. My name’s Patricia. I understand you have schizophrenia, and that you’re worried about your heart.” Doctor clipboard reading. “Your test results show you to be very fit and in excellent health. How do you feel?”

Adrift. Drifting. “I’m not violent. I’m an advocate. I write stuff. I’m sleepy. I think I’m scared but not really much so much now not really are you too are you scared too?”

“No, I’m not afraid, but thank you for asking.” Pausing now. I don’t want this question. Don’t ask this question. Don’t make me answer this question. “I understand that you wanted to kill yourself. Is this still true?”

An advocate. For others. Be one now. For yourself. Tell the truth. “Yes before. Not now.” Tears. Alone. Is she a Replicant, an Agent? The sleepytube in my arm says no.

“You have some people in the lobby, Henry. Would you like to see them?”

One friend shares the sunshine, another brings the Beatles. A third wheels up and takes my hand, she reads about the Muppets. Smiles light the room. There’s talk about music. I’m reminded to eat. I haven’t shaved or bathed in days, but no one seems to notice. I’m alive. That’s what matters.

I’m alive because people care. I’m alive because there are trained professionals who do what it takes. I am alive because, regardless of the Voices and Suggestions, I found a way to follow my plan. I reached out when I needed help, when I knew that my illness wanted to kill me, and it failed because I didn’t. I survived because I fought back, and I did so in the ways designed by my doctor and my team and me.

It’s been a long time since I’ve had an episode this pronounced. Fear and depression have taken me to nightmarish places, but if I were gone, how could I be of service? How could I contribute to the mental health community? Every one of us matters, regardless of how bleak it might get.

I take with me now a new understanding of the strength of my illness, and the power of my heart. The one that stopped. The one that jump-started itself. The sleepy heart that held the hand of a friend when I couldn’t find myself in the dark. I don’t need to be ashamed of who I am, of my illness, or asking for help. This is the way that it is.

 

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Depression and Fear of the Unknown

I wonder if it’s possible to have Major Depression and ever live completely without the fear of it paralyzing me into oblivion. Then again, trying to surmise about my future is robbing me of my present. If I had a dime for every time I’ve been told to live for today, I’d have a boatload of coins stuck behind my sofa cushions.

I’m not okay. These three small words may make some of you uncomfortable. Perhaps they’re scary enough to make you reconsider reading this blog. If so, I understand.

I’m not okay. That does not mean that I’m on the brink of losing it, or falling into a dark hole. What I’m telling you, at this moment, is I’m afraid of those things happening. There’s a profound sadness making its way throughout my brain, traveling south in the fast lane towards my heart. I can only compare it to the aura I get before a migraine – tiny sparks flying before my eyes, forewarning of the pain and misery of what’s in store for the following 24 hours.

I’m not okay. The melancholy with which I awoke this morning is a telling sign that an episode of depression is about to strike. Or, maybe not. I can just as easily get up tomorrow and feel fine. That’s the frightening part of living with a chronic illness. Any sign, (or omen as I call it), of an impending strike, evokes a primal fear – what if this is it? All rationality dissipates when I’m in this place. The years of bouncing back from hitting bottom don’t mean much when I feel the magnetic pull of the dark side. Will this be the time when I reach the point of no return? But maybe it’s only a fleeting bout of the winter blues. After all, the past months in the Northeast have been filled with icy polar-vortex gunk, turning the roads and streets into dangerous sheets of slippery, pot-holed frosty pavement. My instinct to hibernate is at an all time high.

Writing about it helps. Especially when my sweet dog Anya is sleeping soundly next to me. I’m not up for talking it through – analyzing and speculating why I feel so off and so terrified. As a seasoned therapy patient, I’m well versed in the Q&A of treatment and don’t feel the need or desire to make a call. The big red panic button seems off in the distance, yet I still worry that maybe by tonight or tomorrow I’ll be in my crawl space, hiding from the world.

I wonder if it’s possible to have Major Depression and ever live completely without the fear of it paralyzing me into oblivion. Then again, trying to surmise about my future is robbing me of my present. If I had a dime for every time I’ve been told to live for today, I’d have a boatload of coins stuck behind my sofa cushions.

Live in the moment. Breathe. Make a mental inventory of the objects in the room and welcome the sunshine pouring through the windows. Take another sip of freshly brewed coffee from the I Don’t Do Perky mug and relish in the early morning’s silence.

As if on cue, Anya shuffles over to the sunbeams hitting the wood floors and stretches out, making sure every inch of her long body fits perfectly in the rays. She’s closing her eyes and drifting back into a carefree nap. I doubt she’s wondering if she’ll be able to do the same thing tomorrow. I bet all my virtual dimes that she isn’t scared of having her water bowl stolen or losing her favorite blanket. For all of that lack of concern, she’s able to soak up the warmth and live in the present.

My sadness has not gone away, however the fear of spending my life in an eternal state of despair begins to lift a tad. Some days I’m convinced that I have a tight grasp on my depression – I walk with pride, and stand tall while bursting with enthusiasm. I tell myself “I’ve got this,” and lap up every minute. I’ve learned to never take a good day, or even a good hour, a good minute, for granted. None of us should. So when I wake up full of dread and impending doom, I must shift my thoughts to the here and now, just to survive. It’s times like this that simply not getting any worse is something I consider to be a success.

In many ways, chronic depression is similar to the weather. This week’s forecast is calling for more bone-chilling temperatures with no end in sight. But winter is only one of four seasons and as time passes, spring will gradually arrive.

I’m not okay. But I will be.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Overcoming Anxiety and the Disease to Please

If there’s one thing I regret so far this year, it’s not getting a flu shot. Against my doctor’s strong recommendation, I chose to forego getting the vaccine. I’d heard it only works 60 to 70% of the time, and my stubbornness combined with apprehension of having a live virus injected into my arm, simply as a precautionary method, with no guarantee, didn’t seem worth the risk.

If there’s one thing I regret so far this year, it’s not getting a flu shot. Against my doctor’s strong recommendation, I chose to forego getting the vaccine. I’d heard it only works 60 to 70% of the time, and my stubbornness combined with apprehension of having a live virus injected into my arm, simply as a precautionary method, with no guarantee, didn’t seem worth the risk. I was afraid of adverse reactions and side effects that might have had a negative impact on my mental health.  My attitude has since changed. Completely.

What began as queasiness, while watching the Golden Globe Awards, rapidly took a turn into the land of Flu-Ville.  For the days that followed, the flu’s nasty and undesirable symptoms showed no mercy. While my muscles and joints ached so badly, every inch of my body was riddled with pain. Even my toes hurt. My ribs felt like they’d been smashed with a baseball bat. As for nutrition, all I could keep down were a few bites of a baguette and vanilla tea with honey. Having the flu was the opposite of fun. Next year, I’ll listen to my doctor and get the vaccine. Lesson learned.

It was during one feverish afternoon that I was partially awake yet dreaming at the same time. I think it’s called a “fugue state” (Breaking Bad, anyone?). Anyway, it was in this bizarre space oddity that I recalled being very sick many years ago when I first started working full-time after college. I came down with a bad case of strep throat. My doctor put me on strong antibiotics and told me I was in no shape to go into the office. Even so, the idea of calling in sick and making my two bosses angry caused me to have a series of uncontrollable panic attacks. The levels of extreme anxiety caused me to hyperventilate – all out of fear of disappointing my higher-ups and having them angry with me.

Back then, conflict brought on severe strikes of anxiety. I could feel orbs of acid eating away my insides while my heart pounded so loudly it hurt my eardrums. But because I was not yet receiving professional help, I didn’t have the tools necessary to deal with this kind of discord. My psychological angst, on top of my physical illness was too much for me to handle. The memory of twisting with worry-filled stomach cramps at the thought of my bosses sharpening their own pencils and making their own lunch reservations still haunts me. The toxic disease to please had spread throughout every groove of my brain. My throat was killing me, as if I was swallowing broken glass, yet I was truly considering risking my health and going to work just to avoid inconveniencing others. I wound up staying home for a few days, but not without dreading going back and facing the consequences of my absence. How ironic it was that when I returned, at least half of the office was out with the same thing I had.

It frustrates me now that I was so hard on myself and consumed with unwarranted self-hatred. The over-the-top fear of making someone angry with me, of not considering my own needs – truly believing that I was a bad person if I disappointed someone else, were classic symptoms of anxiety and depression. I just didn’t know it yet. This kind of self-punishment went on for years before I began Cognitive Behavioral Therapy (CBT), to overcome those negative thoughts and actions.

The severity of the flu from last week didn’t leave me with any options but to simply rest and wait until the virus exited my system. I fell behind in my workload, had to reschedule appointments and most likely let some people down for canceling plans. Had this been twenty years ago, I’d have been wracked with feelings of culpability, shame, fret and disgrace. Today, I’m simply another statistic of what the Centers for Disease Control is calling an epidemic in at least 40 states, this time with no guilt attached.

 

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Whack Job

At this point in history we are moving toward a more tolerant society where being who you are by nature is no longer a crime. Why then, I have to ask, does our country continue to maintain the errant belief that people living with a mental illness are an allowable target for public aggression?

Busy with his weekend chore of sweeping, the 90 pound teenager with a broom and a tiny screwdriver in his hand became unexpectedly agitated, expressed his confusion, and slipped into another episode. As accustomed as they could be to his behavior when schizophrenia pulled him into his private darkness, the boy’s parents did as they had before, and called the police for assistance in calming down the 18 year old. Based on multiple news reports, officers familiar with the youth’s diagnosis and family situation arrived on the scene, followed police protocol, and began successfully to speak through his psychosis and to his balanced self as best they could, being law enforcement agents and not psychiatric professionals.

A third officer, allegedly irritated by the circumstances after having arrived and assessed the scene only 70 seconds before, ordered the other two to subdue the teen with physical force, instructing them to employ Tasers to further subdue the young man. The detective then unholstered his sidearm and shot and killed the mentally ill boy in full view of his mother and father.

Investigations at the city and state level continue. Eyewitness accounts from family members, friends, therapists, caseworkers, government agencies, and the detective and officers involved in the incident will decide, in a court of law, whether the shooting of Keith Vidal of Boiling Springs Lakes, North Carolina was cold-blooded murder, justifiable homicide, or an out and out hate crime against a mentally ill teenager.

I am not in a position to decide guilt or blame in this killing, nor do I claim to be. I do not know what course of treatment Keith Vidal followed, what medications he was or was not prescribed, how involved his parents and family were or were not in the maintenance of his treatment plan, how well- versed or trained in dealing with psychiatric disorders the officers were, how – or even if – the teen was behaving violently or in a truly threatening manner such that it demanded split-second timing in the decision to end his life. What I do know is that a skinny, frightened, mentally ill boy – with the same diagnosis that I live with daily – was tazed and restrained by two adult officers in full protective gear, and killed in front of his parents by a detective claiming self-defense. Against a child pinned to the floor, paralyzed by electroshock, and lost in the vortex of psychosis and terror.

Not only is this news story devastatingly sad, but if you take in the comments posted by many of various news articles’ readers, the public misconceptions about mental illness are on display in such a way as to further outrage any free-thinking individual. Unforgivably prejudiced words like “psycho”, “defective”, “whack-job”, and “schizo”, to name but a few, are peppered across the internet in the name of Free Speech, exposing the truth behind our culture’s fear of, and discrimination towards, individuals diagnosed with a mental illness.

As an advocate and a person living with schizophrenia, I am appalled by both the news story and the resultant responses to it by its (mostly) uninformed readers, but in no way am I surprised by any of this deplorable thinking. Ignorance is out there and it’s rampant. Education is imperative.

As people living with a mental illness, and as family members, friends, and supporters of the same, we need to work together with our lawmakers and educators to turn this discriminatory behavior around. People have been persecuted and killed for inexcusable reasons, and our culture continues to establish laws to corral such abominable behavior by those who perpetrate it. At this point in history we are moving toward a more tolerant society where being who you are by nature is no longer a crime. Why then, I have to ask, does our country continue to maintain the errant belief that people living with a mental illness are an allowable target for public aggression?

Do we, as a people, need to consider outrage as a means to right societal wrongs, as did the courageous advocates for other human causes before us? The “acceptable” stigma and discrimination against people with mental illnesses appears, for all intent and purposes, to have replaced previously unacceptable forms of bigotry and prejudice. As communities continue to make progress in accepting human rights, promoting healthy viewpoints, creating and establishing laws, and empowering individuals regardless of race, religion, gender, or orientation, why do we idly stand by and allow the cruelty and hostility of demeaning language and the thoughts behind it, to cripple, disable, and otherwise taze and murder the delicate hope that we can bring change to mind, when all we really want is to be accepted and loved by the world into which we are born.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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2014

If any of you are sliding into depression this winter I do have one consoling fact. Our days are getting longer now by one to two minutes of extra daylight per day. I, for one, am happy about this. For those of you who live in areas that don’t usually get such cold I really feel sorry for you. Hang in there!

Really? 2014? How bizarre is that for those of us who are ‘older’.  Very bizarre.  You know that whole line of years that comes up when you’re having to put in your birth year online? My year is a really long way below 2014!

Nevertheless, I’m happy to start a new year. And I’m happy that the holidays are behind us.  I had fun with my family and enjoyed myself but the flurry of activities has a way of squashing the routine of each day.  The word ‘routine’ can conjure up an image of boredom but for me routine is a happy place, especially in winter, and when my routine is disrupted I have a hard time.

To be perfectly honest I’ve been having a hard time since Christmas. I ordered one of those SAD lights and am hoping it will help me get up earlier than I have been getting up. I’ve fallen into a rut; I can’t sleep, even on medication that usually makes me drowsy, then I can’t wake up in the morning. I find this pattern disturbing because my love of staying up late is getting a bit tweaked. I mean, I hope my late nights don’t trigger mania. So far these late nights have only triggered a depression, on a scale of one to ten, around a 6 or 7.

So, what I intend to do with the SAD light is put it next to my bed on my bedside table then set my alarm. Once the alarm goes off I’ll switch on the light and what I’m hoping is that I’ll be able to get up with the help of the light.  A friend of mine, who is also bipolar, told me that SAD lights aren’t good for those of us who are bipolar because they may trigger mania. Taking all into consideration the fact that I live in Montana where the winters are long and many days are dark, I think it’s worth the effort to try to lift my mood with a SAD light. I’ve used them before and I wasn’t triggered into mania but I would check with your doctor before getting one.

If any of you are sliding into depression this winter I do have one consoling fact. Our days are getting longer now by one to two minutes of extra daylight per day. I, for one, am happy about this.

For those of you who live in areas that don’t usually get such cold I really feel sorry for you. Hang in there! I wish you weren’t going through such a terrible winter and hope you’re staying warm. I’m thinking of all the street people who must be suffering terribly. I suspect, and hope, that many churches have opened their doors for those in need of a warm space.

We WILL get through this winter and then we’ll be bitching about the heat. Bring it on!

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Gimmie Shelter

Unbeknownst to me, my life was hurdling towards a brick wall. I was miserable; not sleeping; not enjoying one single thing. My self confidence and self esteem were on a slippery slope. I felt that I did not deserve to be with my girlfriend. But perhaps the most troubling factor was that I did not know that I had depression. I did not understand that I was ill. I did not know what mental illness was then.

“Yeah, a storm is threatening
My very life today
If I don’t get some shelter
Lord, I’m gonna fade away” Rolling Stones

When I was a teenager, I discovered blues music, and then The Rolling Stones.  Over the years I have purchased many Rolling Stones albums, 8 tracks, cassettes and then CD’s.

In time, the opportunities to actually see the Stones in concert arose. Their No Security Tour was announced in the winter of 1999. Due to the slow dial up internet back then, by the time I got through, the only cities with tickets still available were Cleveland and Pittsburg.  I randomly chose Cleveland and purchased two tickets to the April 1st, 1999, concert. I had a girlfriend and we had discussed our going to see the Stones.  She knew how important it was to me to see them in concert, a lifelong dream.

About a month before the concert, she called my black brick sized cell phone as I drove to the office.  After that call, I was going solo to the concert. Not impressed! Here I was with two tickets! I thought, who could I now find to invite? My accountant’s new receptionist and I had flirted a bit, so I made a visit. I took her aside and asked her if she wanted to join me. She quickly agreed and off we went. The concert – pure happiness!

“It’s only rock and roll, but I like it.”

In the spring of 2002, the Stones announced their Licks Tourin celebration of their 40th anniversary as a band. The closest concert – Boston on September 3, 2002.

I had a new girlfriend at that time but I secretly purchased two tickets to the concert.  Unbeknownst to me, my life was hurdling towards a brick wall. I was miserable; not sleeping; not enjoying one single thing.   My self confidence and self esteem were on a slippery slope.  I felt that I did not deserve to be with my girlfriend. But perhaps the most troubling factor was that I did not know that I had depression.  I did not understand that I was ill.  I did not know what mental illness was then.

The concert weekend – I took a flight to Boston alone. I disappeared, no one knew where I had gone.  Boston is one of my favorite cities to visit.  I know it very well from the waterfront to Fenway Park to visiting the bookshops around Cambridge.  But this time was different.  I was very emotional and found myself sitting on many park benches with tears of emptiness. I had no clue what was happening.

The day before the concert, I noticed a small crowd in front of the Four Seasons Hotel. The Rolling Stones were exiting the hotel to travel to rehearsal.  So there I was about 10 feet from Mick, Keith, Charlie, and Ron.  I should have been ecstatic. Instead, I stood there numb – completely void of emotions and feelings.

Things were about to get worse. I walked to the Fleet Center for the concert, two tickets in my wallet. I took my seat. A sold out venue, but an empty seat beside me. I was beginning to recognize that my life was in a really dark place. I still have visions of that seat, that sense of total loneliness.

“No colours anymore, I want them to turn black.”

Six months later, the brick wall.  On March 7, 2003, I was diagnosed with depression and five days later had a mental breakdown.  I would attend therapy once a week for two years and rarely left the house for several years. So, when the Stones announced A Bigger Bang Tour in the spring of 2005, I was confronted with the opportunity of seeing them again.

The first concert was scheduled for Boston on August 31, 2005, at Fenway Park.  Was I healthy enough not only to attend a Stones concert but to return to Boston? My family and I discussed at length whether I should go. But with their encouragement and my slowly returning self confidence, I decided to make the attempt. It was certainly a challenge to fly to Boston with 2 days ahead of me to try to enjoy the city. I think I was in contact with my family almost every other hour simply confirming that I was doing well.  We were all concerned. But no need.

I felt so good that I was able to attend a performance of the Blue Man Group, and truly laughed.  The night of the concert I walked from my hotel to Fenway Park along with thousands of other Rolling Stones fans. I was in the second row from the stage! It was amazing to hear, see, and almost touch the music. I was on my way to enjoying life again.

“But it’s all right now, in fact it’s a gas.”

A few weeks later the Stones performed in Moncton, New Brunswick, just a 6 hour drive from where I live. Off I went! Another amazing concert for me and the other 80,000 people there.  Two concerts in 3 weeks!  I was starting to feel a sense of happiness which had been missing for years.

“Hey, hey, there ain’t no stopping me now. Hey, hey, you got me rockin’ now”

The Stones announced their 50 and Counting Tour for the summer of 2013, celebrating their 50th anniversary. There was no question that I would be attending a concert somewhere. I am as healthy as I was in my 20’s but with an additional 25 years of life experience. I saw the Stones perform in Toronto on June 6.   The concerts just get better!

“If you start me up I’ll never stop”

Then I saw them in Hyde Park, London, on July 6. London is a special place for me and then to be able to see the Rolling Stones….a few tears of joy at this, the BEST concert.

“I’m the man who walks the hillside in the sweet summer sun.”

But wait…the Stones continue, 14-On Fire Tour. I am far from done! I can even happily buy 2 tickets now. Life is good, even wonderful at times!

“ I’m free to do what I want any old time. So love me, hold me, love me, hold me. I’m free any old time to get what I want.”

 

Keith Anderson is a lawyer and mental health advocate. He has been a Bring Change 2 Mind volunteer since December, 2009.  He has had articles on his journey through depression appear in the National Post newspaper and  publications of the Canadian Bar Association and the American Bar Association. Keith has presented at national conferences and at local events in his native Canada. He sees stigma that is too often inflicted on so many people with mental illness as a form of discrimination, a human rights issue. Keith continues to return to a life worth living by still experiencing new things, such as recently eating sushi for the first time and enjoying it!

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Hey! Ho! Let’s Go!

Resolution (noun): the quality of being determined or resolute. Resolute (adjective): admirably purposeful.
Purposeful (adjective): having or showing resolve.
Resolve (verb): the course of harmonic change.

I awoke to a gorgeous, crystal-foggy morning…and no coffee in the house. I needed espresso, lozenges, and guy-liner, STAT. My band was playing a sold out show in less than eight hours. It’s only rock and roll, but I like it.

My carbo-load cornucopia of fruit, rice, and veggies belied my avidity. The checker paused to consider my shadow pencil, and asked if I liked the brand. I told her it was my favorite. She asked if I was a musician. I said yes. She asked who I played with and I told her. Her demeanor insta- switched to glam fan as she gleefully informed me that she and her friends all had tickets. I didn’t get to revel in the compliment because the Voices denied me access. So I shrugged shyly and tried to change the subject. She wouldn’t have it. Her enthusiasm kept me focused. Color me thankful.

Through the past five months of rehearsals, band members who had grown up together were learning new things about one another. Eventually my mental illness became a topic at a post-practice dinner party. Our manager, Kitty, had known me since we were teens, and had watched schizophrenia dismantle my life, but only recognized my disorder a year ago when I went public with it. She contacted both my sister and my friend, Coach, to learn more about what was happening with me and asked how she might help. By telling my story in print and in public, my circle of trusted friends grew larger and more intimate.

Team Kapok – named for the cotton-like substance used as stuffing for cuddly toys and life preservers – was formed to keep me tethered and freer from harm than when I had been battling my symptoms alone. Our rhythm guitarist had read my blogs, and he and his wife both support BC2M. He asked to meet Coach and join the team. I was finding compassion wherever I turned. For a paranoid schizophrenic, this “being loved” notion is a huge leap of faith, believe me. By educating myself about my condition, and by advocating publicly and fighting the shame and self-stigma I ofttimes associate with being labeled ‘crazy’, I had created a safety net around me for those times when I couldn’t manage the unanticipated twists and turns of my illness. Like the surprise ride I unknowingly took twenty minutes before my slot in the show.

Our makeup artist chatted amicably as she worked, interrupting herself to tell me when to look up for the waterline and down for mascara, while exchanging stories with the other performers in the Green Room. When everyone’s touchups and tuneups were completed they hit the stage, and I found myself alone in my chair and still out of costume. Voices filled the empty chamber and manifested as specters. Abruptly, like a bad film-splice, I heard my name, applause, guitar, drums – fragmented shards of a shattered kaleidoscope. The next half-hour was a euphoric blur of rock and roll rapture; an ocean of music fans, and So. Much. Fun. But rewind that tape and watch the backstage roller-coaster derailment up close. I had to. Something just seemed wonky.

Over brunch the next morning, Coach recounted the missing details for me. Kitty entered the dressing room and discovered me talking nonstop gibberish to no one, seemingly oblivious to the gig and, more importantly, to myself. She stepped back out and found Coach in the audience, got some helpful advice from him, and returned to her Chatty Cathy doll lost lead singer. She brought me back to this world from mine, where I’d been struggling with the puzzling demands of people no one but me could see. Those demons didn’t need to be at the show, and they didn’t deserve to steal me away. Kitty’s soothing voice and choice of helpful questions and suggestions calmed me down. She rubbed my neck and shoulders, soothing and “containing” me as Coach had recommended; her years of parenting skills honed to help a child through a “time-out” now applied directly to the showbiz implosion in red skinny jeans and reflexive dissociation. Monsters melted away and the carny barking Voices let me off the ride. The show was a huge success. I got to live my dream of working with some of the best people I know. In spite of having a mental illness.

Resolution (noun): the quality of being determined or resolute. Resolute (adjective): admirably purposeful.
Purposeful (adjective): having or showing resolve.
Resolve (verb): the course of harmonic change.

Change (noun): a refreshingly different experience. Experience (verb): feel.
Feel (verb): be aware.

Aware (adjective): have knowledge, understand. Understand (verb): comprehend, mind.

Happy New Year, everyone. Bring change to mind.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

 

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Spread the Word

A few weeks ago I had the honor of representing Bring Change 2 Mind on the popular live-streaming news network, HuffPost Live. The topic of the segment was Stigma and Mental Illness. As one of three guests speaking on this important subject, I was able to give a first-person account of living with Major Depression and Anxiety within the context of the different levels of support and compassion one receives when combating a mental versus physical illness.

A few weeks ago I had the honor of representing Bring Change 2 Mind on the popular live-streaming news network, HuffPost Live. The topic of the segment was Stigma and Mental Illness. As one of three guests speaking on this important subject, I was able to give a first-person account of living with Major Depression and Anxiety within the context of the different levels of support and compassion one receives when combating a mental versus physical illness.

Stemming from an article written by one of the other guests, Larry Lake, titled “No One Brings Dinner When Your Daughter Is An Addict” the 20-minute conversation gave viewers an inside peek into the reality of just how painful it can be for families who receive overwhelming community support when one member has a disease such as cancer, yet little to no support when another member has addiction and/or mental illness.

One of the benefits of having a live-streaming talk show is that viewers get to post remarks on the site in real-time. It didn’t surprise me that a large percentage of the comments were from people who were the victims of stigma and discrimination due to their own mental illnesses. As someone who is comfortable sharing my own hurdles in dealing with stigma, I spoke of the time I had shoulder surgery a few years ago. Unable to do things for myself by not being able to use my left arm, I received both the emotional and physical support necessary to help me get through the bodily pain and have whatever I needed taken care of by family, friends – even strangers.

On the flip side, when I took a six-week leave of absence from my job to deal with my debilitating depression, the help, encouragement and support I desperately needed was scarce. At first I was angry and felt that no one cared about my well-being, but over time I realized that most people just don’t have a clue that fighting depression, or any mental illness, can be just as physically and emotionally incapacitating as recovering from major surgery – if not more so. Because an illness of the brain doesn’t require arm-slings, crutches, neck braces, wheelchairs or bandages in order to heal, millions of sufferers and their families wind up alone in their time of need.

What I took away from the HuffPost Live experience was very clear. What needs to happen in order to continue to reduce and one day eliminate the stigma of mental illness is to keep the conversation going. The more we share our experiences, the less taboo the topic becomes. It’s really up to us to change misconceptions. If we feel shame about our illness, how can we expect others not to?

Ever since I began taking the steps towards being open, honest and now confident about revealing my depression and anxiety to others, the fear of being shunned or rejected has slowly dissipated. I feel less depressed and anxious just knowing that my written and spoken words have had a profoundly positive impact on other people who’ve suffered in silence most of their lives.

Respectful discussions and conversations, just like the one I had during the HuffPost Live piece, will educate the public and make a real difference in how mental illness is both perceived and understood in the community.

The tremendous online response to Mr. Lake’s story is a true testament of the palpable desire and need for people with mental illness and their families to bond, connect and unite with others who “get it” and have been there themselves.  It’s crucial now to keep the momentum going, to talk about mental illness without humiliation, and most importantly to let others know that they are not alone.

http://live.huffingtonpost.com/r/segment/528114ccfe34447c7f000255

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Sugar Sparkle Stars

Two weeks ago I was prey to an unexpected event of psychosis, but together we tethered. My phone found my hand found speed-dial found Coach, who in turn found me fragmented and terrified, convinced that I was dead. Coach held the line. I lost the day, the night before, and the day after into the weekend. Coach got me home.

“Outstanding reindeer sweater,” says the Coach, handshake in progress as our coffees arrive. He is always in motion, therefore always a little late, but never when the chips are down, and absolutely never when I reach out. His succor is as genuine as his compliments are sincere, which is why he heads my team, and why he remains my best friend. I ride the sunflowers and sing the rhinoceros. When I am surrounded by flying monkeys, he wields a gnarly bat.

Two weeks ago I was prey to an unexpected event of psychosis, but together we tethered. My phone found my hand found speed-dial found Coach, who in turn found me fragmented and terrified, convinced that I was dead. Coach held the line. I lost the day, the night before, and the day after into the weekend. Coach got me home. He contacted my therapist. He widened the net to include other team members – someone to help with grocery shopping, another to help with meals. One even brought me homemade bread, still warm from the oven.

The fresh fruit on my plate caught his eye as he settled into the booth; when I’m in reentry I tend to sugar-binge. “Healthy choice, my man. We’re not feeling so candied this week, eh? That’s progress!” Big hearted smile. A friend who cares. Who’s done his homework. Who gets it.

Coach has seen me to the brink and back. He was with me when the Gatekeeper hacked my brain. He will be there when I take the Long Walk, and I want him to address it honestly, to tell people what it was like to befriend the Mad Hatter.

I will ask him to quote Vincent Van Gogh, who said: “For my part I know nothing with any certainty, but the sight of the stars makes me dream.” And – knowing that dreams of music, art, and poetry were so much more than my stars – he’ll further quote the great painter, sharing a point that I hold truer than brush, string, or pen: “I feel that there is nothing more truly artistic than to love people.” It is, after all, the art of being human.

A year ago the Voices took me to the abyss. I tried to outrun my illness. I had lost my Helpers – the people I had grown up with, people I had known throughout my life. Real friends who understood, who talked with me, played with me, went to school, work, and home with me. Through therapy I had learned that mental health professionals considered them to be the mind’s mechanism of defense against stress and fear. Stunned and stymied, I had to know. I didn’t want to know, but the Voices pushed and I couldn’t push back. One by one my friends said goodbye, and I was left alone, Helper- less, so that I could walk in the Real World. The world where stigma, discrimination, bullying, and ridicule lived.

I hated my diagnosis, my loneliness, my life. Convinced that suicide was the only answer to the loss mental illness had wrought, I pulled my plastic raincoat over my pajamas and walked shoeless into the winter gloam. The forest between my home and the zoo had always been my sanctuary. On that day I’d forgotten my trail of breadcrumbs. There was no sugar sparkle. There was only the poison of schizophrenia, and a bridge above the highway. I climbed the concrete railing. Traffic slowed. Drivers honked and waved. Did they really want to see me jump?

A young boy stared up at me through the windshield. In my headphones, the Beatles wondered where all the lonely people came from. Was the same song playing on that child’s radio? Was he waiting for an answer, too? Was I willing to be accountable for dragging him down with me, thereby forcing him into a lifetime of trauma, an endless echo of my own stolen innocence? Could I fall from the sky, where the lonely people come from, a person with a mental illness who’s only contribution was being one more newspaper statistic, amplifying the public misperception of my illness? Of yours? Ours? Where had I misplaced those stars?

Experiencing extremes of depression and despair, it was crisis that finally took Van Gogh to an empty field where he shot himself. The bullet missed his vital organs and got lodged in his spine; surgeons tried to remove it, but to no avail. The next day, as he sat smoking his pipe and dying from infection brought on by his sorrow, Vincent told his brother Theo, “The sadness will last forever.” These were his final words.

On this beautiful icy morning, eating fresh wild berries in my favorite cafe, everything sparkles, especially me. I am alive because I have a friend.

 

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Riding in the Fast Lane

As children, my generation was taught that we can “make the world a better place.” Although I am a firm believer of this statement, a single question arises in my mind - how are we, the younger population, supposed to make a difference when most of our education surrounding mental illness comes from the unreliable and deceptive media?

My alarm clock sounds, piercing the once stagnant air of my darkened room.  It is six in the morning and time to wake up.  Great, another day of swim practice, lectures from professors, eating nasty food, and cramming to get all my homework done.  These all sum up to equal my favorite, yet most undesirable word, stress.

People have often asked me how I do it- the whole being a college student thing and somehow still having the ability to get things done on time without erupting into an inferno of flames.  The truth is, I don’t have an answer for that question quite yet because sometimes I do erupt.  People just don’t see it because I do my best to hide what I’m going through on a daily basis.

On many days, living with Bipolar feels like you’re riding in one of those fast sports cars down a highway as the sunsets over the horizon. One moment you’re driving a hundred miles per hour…you feel like you can do anything going so fast.  You’re almost superhuman…

And then.

And then, you come to a screeching halt because something goes wrong.  It’s not like one of those steady stops that you make if you’re a good driver. You slam down on the breaks and jolt forward. All of a sudden, life as you know it has spiraled downward into that beautiful, yet tragic abyss of depression.

After catching your breath for what seems like an eternity, you begin to accelerate again, reaching that same speed you were at before.  Once again, you’re flying.

Somehow, I learn to live with the tempestuous person that I am. Some people tell me how “calm and collected” I seem to be, but that’s after they find out I’m bipolar. I try to take this as a compliment; however, in a way it feels almost discriminatory… like I don’t represent the “crazy” bipolar culture well enough. Maybe you just caught me on a good day?

But I am here to talk about now.

Today is one of those days where life has stopped and been put on “pause,” as if you’re some red button on a remote control.  I feel like I’ve simply run out of fuel and I’m on the side of the road panicking trying to flag anyone down for help.

However, asking someone for help can be problematic in today’s age because the first thing that comes out of this person’s mouth is always the same. I like to refer to it as the universal “questionnaire”-
1. Are you suicidal?
2. Are you going to hurt someone?
3. Are you on medication?

I normally try to block out the questions because I get angry. They don’t understand. I wish those who do this could see that I’m human too- not some idiot out to get someone because I’m “crazy.”

As children, my generation was taught that we can “make the world a better place.”  Although I am a firm believer of this statement, a single question arises in my mind- how are we, the younger population, supposed to make a difference when most of our education surrounding mental illness comes from the unreliable and deceptive media? I love standing in line at the grocery store and seeing “PSYCHO” or “her troubling past with psych ward admissions” printed across what seems like every popular magazine for young adults-especially those for women. How lucky of the person they are referring to for gaining front cover status!  What kind of message does this send to the rising generation? What it sends is a false idea that we “unstable” individuals are not to be trusted.

Residing on a college campus while living with Bipolar can be quite difficult because it is hard to find someone who actually knows what they are talking about when it comes to us “mentally ill folk.” Education on mental illness has been continuously skewed into some misunderstanding and has thus caused an epidemic of shame.  Sadly, the discrimination of those who live with mental illness has been occurring for hundreds of years and this shame has been incessantly “shoved under the rug.” People are hesitant to come forward. They fear that the people they tell will view them differently from what they did before and honestly, they will.  I remember the day I first shared my story with someone.  A look of uncertainty comes across their face; they called me an “inspiration” because of everything I’ve “been through.”  Take this as you will; however, I don’t want to feel like an inspiration.  What have I done that is so “inspiring?”  I am living.  I am living with what one in four Americans will experience in their lifetime.  We are all secretly storytellers living in this mixed up world.

Sometimes I cry.  There are still days when I feel like the world will never understand me and I should just give up what I have worked so hard on to establish.  However, I know this thought is wrong.  I know I am not alone in my fight to end this epidemic.  We, the troubled, the weak, are called to fight in a battle, a war on humanity’s ancient and negative view on mental illness.  I don’t want to be a secret anymore.

Will you join me?

Lauren is a college freshman and first became involved with Bring Change 2 Mind as a high school student when she became the youngest walk captain in our national program. Having personal experience with mental illness has helped her to gain a greater perspective on the world around her. Lauren looks at her illness as an opportunity to help others understand those who live with mental illness as well. It is her personal mission as a young person to do all that she can to help eradicate the stigma.

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Table for One

My folded hands are pointing heavenward and my head is bowed in prayer. A scrumptious meal is spread out before me: cranberry sauce, a basket of rolls, a plateful of mashed potatoes and peas. In the center of the table is a golden, glazed turkey. I am five years old in this photograph. Everything about the dinner is fake. Everything but the prayer. I was praying for real food.

My folded hands are pointing heavenward and my head is bowed in prayer. A scrumptious meal is spread out before me: cranberry sauce, a basket of rolls, a plateful of mashed potatoes and peas. In the center of the table is a golden, glazed turkey. I am five years old in this photograph. Everything about the dinner is fake. Everything but the prayer. I was praying for real food.

The fluffy, white potatoes were plaster of Paris, the rolls were stale bread coated in varnish. Plasticine blobs and pellets stood in for cranberries and peas. The turkey was papier mâché stuffed with shredded newspaper. Even the water was a mirage: clear resin in a plastic glass. And dessert? A crumpled lighting gel beneath a dollop of shaving foam.

Put into perspective, this slight-of-hand scene made sense. My father had been the puppeteer host of a children’s television show, his famous costars the product of his sculpting talent and theater magic. With three baby ducklings in a row, however, Dad had found a more reliable income in the field of advertising. By default, I was the child model for a calendar commissioned by a local funeral parlor. The clients were as waxy and dead as the fake food in front of me. My fifteen minutes of fame took five hours, but a photo is eternal. I am forever praying, as frozen in time as the Naked Lunch I’d never eat.

Olives were dutifully plucked from fingers while stories were swapped about Thanksgivings past, and when it came around to me, I noticed that every face of every member of my adopted family was as frozen as Burroughs’ enigmatic repast. My five seconds of infamy took months to recall, and the self-stigma that trailed behind me like some pilgrim boy with a musket emerged from the thicket in time for last summer’s Labor Day barbecue. Following an episode of psychosis, the way that broken memory can recall in clear detail that which the mind refuses to accept, regardless of the magnitude, can be almost as debilitating as the symptom itself. Resurfacing like an embarrassing photo from a night of unmufflered tomfoolery, memory of minutia has no skeleton key fashioned to provide one freedom from their shame.

“My shoes are melting.”

You could have heard a pin drop. My host, her husband, and a dozen other family members were as still as the November air across the Puget Sound. “I can’t be here today because my shoes are melting.” Not the shoes I was wearing, not my blue and orange trainers, but the black Oxfords I had left in a box in the closet, behind the plastic case of old tapes and manuscripts that their brother had left to me upon his passing, years of music that he and I had recorded together and alone, many Thanksgivings ago. “Melting. They just melt. I can’t come to dinner now.” Bemused smile and wet eyes. Just shoes and no dinner. I had lost my mittens. I would get no pie.

The younger of two adult sisters was a Candy Striper. Her training and her compassion reached from soul to survivor, lost at sea, where’s the lighthouse, the harbor? There was something in a box, an orange box, a plastic thing with words and music. “You’re all right, Henry – those are awesome shoes. I remember buying those with you. They’ve really held up well.” Her boxer puppy was the color of my melting Oxfords. Their faces were familiar. Were there laces? Her mother’s arm found its way around my shoulders, and the papa strode across the living room with open arms, delivering a bear hug I’d first felt at a NAMI Walk when I’d stepped through a portal of fear and uncertainty and he was there to hold me up. Everything about that dinner was real. An olive found its way to my mouth. Black shoes don’t have pink tongues, but puppies do. I think they pray for salty brine.

Last Thursday I was running errands in a neighborhood one over from mine. I was on my way home when I randomly experienced a complete meltdown. I fragmented for no apparent reason. In public. How I managed to call my doctor, and then my best friend, I can only chalk up to therapy, practice, and instinct. My buddy was on his way to work and he kept me on the phone until he found me. This is all that I remember. It will take time to recall my relapse. I will ask him for a play-by-play so that I can learn more about what happens on the outside, something I can use in the future when Hell takes a holiday.

Gratitude? With my every breath. Like olives from a finger.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Thanks and Giving

I’m thankful to all of you who are bringing the issue of mental illness to the forefront of our consciousness. Awareness comes first, then we can begin to change, not only our attitudes but how the mentally ill are treated in our law enforcement and medical systems.

As we approach the holiday season, I wanted to share some of my thoughts about thanks and giving.

I am the ultimate turkey scrooge. Cooking for others sends me into a panic. I hate looking in cookbooks because if I like a recipe I know I have to make a list for it then shop for it. Since shopping is what really sends me into a panic I just don’t look in cookbooks. Pathetic, I know, but true. Besides, I might forget an important ingredient that means I’ll have to go back to the store. You get what I mean, I’m sure.

So, this being Thanksgiving my whole heart is into the Thank you’s, not necessarily into the Giving because Thanksgiving giving is the giving of food. To make sure I don’t have to cook I gave my stove away to a friend. Perhaps I’ll get another one but not before Thanksgiving this year!

Looking back on this year I am bowled over by the progress we have made at Bring Change 2 Mind and it’s all been because of YOU, our huge family. So many have found us, so many have become involved not only through NAMI Walks but through writing blogs or forming groups who help raise money for us like the Mullica Hills Women’s Triathlon Club in New Jersey.

And the young people! From babies on the walks to teenagers, there has been such great involvement from young people. Getting them involved is what will inevitably bring about a change in how everyone thinks about mental illness. They will grow up knowing that mental illness is a disorder, not something to turn our backs on or joke about or use as an insult.

Glenn, Calen, Meg (his wife – sorry ladies!) and I shot our new PSA in NY this year. Oh, I forgot Snitz! She was there too and the only one who stayed warm with her thick Montana fur. I want to thank my brave son for being ‘the face’ in the new PSA and thank Meg for being part of it all.

Glenn and I spoke to amazing groups of people, from Houston to Akron to Omaha. I have been so moved by the stories I hear everywhere I go, and that includes home. Calen and I spoke, with Dr. Levy from McLean Hospital, to our home crowd in Bozeman, Montana. So many people came that many were turned away. Thank you Houston and Akron and Omaha and Bozeman!  I’m thankful to all of you who are bringing the issue of mental illness to the forefront of our consciousness. Awareness comes first, then we can begin to change, not only our attitudes but how the mentally ill are treated in our law enforcement and medical systems.

Thanks to ALL OF YOU for helping us attain this goal and for telling your friends and family about your involvement with Bring Change 2 Mind. We want more people to join our movement of change. We shall overcome!

With love and best wishes for a great Thanksgiving,
Jessie

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Video Killed the Radio Star

My brain lies to itself. The brain that I rely on for answers can’t always distinguish between the perception and the experience, the here-and-now and the “what ifs”. It cannot be fooled into believing what I tell it, because, as a mind, it has made up its own. A smile cannot turn a frown upside down. A positive attitude is no more a cure than is a sportswear slogan - “just doing it” doesn’t do it. My recovery depends upon communication. At all costs.

It was intended to be a letter to my family. I’d been sick, and was compelled to connect. Obsessively so. The phone was a foreign artifact, something other people used to order take-out pizza. In the haze, I had changed my cell number and neglected to tell anyone. I chanced upon my reflection in a shop window: greatcoat, wool hat, wraparound shades. Superheros do their best work under cover of darkness. It was midnight. In July.

Camouflaged in plain sight, I could create the connection. Safe, secure, protected, vigilant. Not the corpse in the empty room, not the lone light bulb stuttering out. I was not preparing for The Long Walk. I am fine, I thought. I’m healthy. It’s the doctors who are confused.

This would work. I would look directly into the camera and explain to everyone: it’s just something that happens to artists. I’ll be alright. People like Philip K. Dick, Zelda Fitzgerald, Vaclav Nijinsky, and Brian Wilson all lived with schizophrenia. I would be fine, if not famous, as long as people stopped stealing my thoughts. This message would set me free. But first I had to climb the back stairs of my building. I had to leave my apartment. Had to leave. Had to.

WHAT and IF – two words when combined by the thought disordered mind mean “everything is of equal value”. Everything. The weight of the wheat beneath the color of the wind in the tall grass over the scent of the sunset sounds the same as the taste of the kiss on the silver screen. But what if I can’t get to the roof? What if the building collapses? What if I send this message and the bottle capsizes in the vast ocean of I Have No Family? What then?

Highway traffic rumbled in the background, crows gathered and gawked at the guy on the rooftop, rats scampered along the banisters, harvesting barbecue leftovers and cigarette butts. I’d picked out a clean shirt, put on a tie, and set my camera up on its tripod. I spoke in a confident manner, looking directly into the lens as if speaking to a dear friend over dinner, listening to the waiter offer the daily specials, ordering wine and desert. Like real people. Normal people.

“What’s normal?” someone will inevitably ask, dismissing my having just explained the concept of What If, and that I can’t differentiate between the Common Reality and my Private World. This isn’t a simple distinction between night and day. It’s more like the difference between π and chicken Tyvek. Impenetrable.

“Who’s to say what’s ‘real’ anyway?” delivered with a blitheness meant to somehow comfort. It doesn’t. It’s trite. But I understand that they’re trying. After all, they’ve just been told that the person they thought they knew is one of Those People – the unpredictable ones that the media claims are singularly responsible for all manner of unspeakable chaos. People like guitarist Peter Green of Fleetwood Mac. Nobel laureate John Nash. Soccer superstar Andy Goram. First Lady Mary Todd Lincoln.

Well, they’re right. I AM one of Those People. I am one percent of the world population. One percent who live every day, every hour, with a debilitating and degenerative thought disorder, as difficult to tie down as it is to spell.

My brain lies to itself. The brain that I rely on for answers can’t always distinguish between the perception and the experience, the here-and-now and the “what ifs”. It cannot be fooled into believing what I tell it, because, as a mind, it has made up its own. A smile cannot turn a frown upside down. A positive attitude is no more a cure than is a sportswear slogan – “just doing it” doesn’t do it. My recovery depends upon communication. At all costs. That’s a lot to ask from a person who might be brunching with a bestie who isn’t in the booth and never was.

Days passed before I saw the playback. I love watching movies. I can see an actor applying their craft like I listen to my band members nailing a solo. The man in my message had bagatelle eyes that spoke truth even when they went Frankenstein. His voice broke when he talked about Van Gogh’s rhinoceros. He cried as he described his shoes melting, and the meals that he ate from the garbage.

It’s been a long time since that video. I never showed it to anyone. But I kept it as a reminder of those darker days, to reinforce the belief that, even at my worst, I am still in here. This is my blueprint. My job is to communicate without prejudice. To be braver than the bravest of men. I will always be one of Those People. I am proud to represent.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Autumn in New York

Over the decades, I’ve learned that there’s only so much I can do to ward off depression, disguised as ducks lined up in a row, waiting eagerly to march into my brain and screw me up. I should have seen this coming. Had it been summer, I’d have been expecting it, but because of the false sense of security that autumn brings, I let my guard down.

The comforting smell of heat coming through the slots of the radiator in my bedroom confirmed that the cooler days of autumn had officially arrived. A small rush of excitement ran through my brain. Every year, that welcoming scent of warmth exhilarates me, in the same manner of lilacs in spring, bringing with it a new sensation of hope and anticipation — a new season, a fresh start. It was time to pull out the folded sweaters stored in dust-free containers from under my bed and place them neatly on my shelves. I’ve always loved the fall — it’s when I’m at my best, my frame of mind is optimistic, my outlook leans towards the positive side of life.

My worst depressions happen during the summer months. The choking heat of the sun keeps me indoors during the days, preventing me from joining my friends on the beach or stretching out on a blanket in Central Park. Summertime is when I decline invitations to events that require short sleeves and SPF 100. My nearly translucent skin and sensitive eyes have made it impossible for me to last more than 60 seconds on a corner waiting for the traffic light to change. Even on cloudy summer days, the heat and humidity launch migraines so severe that the only cure is for me to stay in a blackened, soundproof room for up to 48 hours.

I welcome the sweater and boots season not only for the invigorating chill in the air that I long for during the hot days of summer, or the rich and colorful foliage it brings, but for the personal historic absence of depressive episodes — until now. This one I should have seen coming from far away. All of the markers for a major depressive occurrence were waving red flags and I chose to ignore them, believing that autumn itself would protect me, shield me, from the perfect storm conditions that cause my mental illness to flare up.

Just a few weeks ago, I’d already been fatigued, mentally and physically, from work-related stress and uncertainty, when it was time for me to go to jury duty. Figuring I’d put in my mandatory two days and then get back to normal life, it came as a shock when I was selected to serve on a criminal case, one that lasted an entire week. The trial, while interesting, also left me little time to keep up with correspondence with clients and writing deadlines, causing me tremendous anxiety. I also wasn’t getting the necessary daily rest that is an essential part of managing my depression.

Relieved when the case was over and looking forward to returning to my regular schedule, I brushed off a consistent heaviness in my chest, pressure in my head and a sudden breakout of hives – chalking it up to a week of sleep deprivation and raised levels of angst. A day later, when the symptoms hadn’t gone away, my doctor confirmed that an infection had invaded my body. He started me on antibiotics, steroids and a strong antihistamine – and lots of bed rest.  Another week of little to no productivity passed, and that’s when depression came a’ knocking.

Over the decades, I’ve learned that there’s only so much I can do to ward off depression, disguised as ducks lined up in a row, waiting eagerly to march into my brain and screw me up. I should have seen this coming. Had it been summer, I’d have been expecting it, but because of the false sense of security that autumn brings, I let my guard down. I was ripe for a full-blown depressive attack. The kind that paralyzes me, affects my speech — my voice becomes unrecognizably shaky, as does my handwriting.  With a giant depression this strong, I can hear the waves crashing down inside my head, the whirl of water and gusty winds of a hurricane pounding my eardrums. All I can do is hang on tight and wait for the storm to pass, as it always does, but not without leaving behind collateral damage.

Autumn will always be my time of year. I refuse to let this one ugly chapter ruin brisk walks with hot chocolate days and toasty warm, cuddly nights. I’m slowly making my way back to the smooth and steady pace of tides ebbing and flowing calmly this season, while the storm makes its way out to sea. Depression may have had its way with me this time around, but now I’m ready to proceed, with a small touch of caution.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Comorbid

The stigma attached to schizophrenia, especially in children, prevents most families from having their child diagnosed when behaviors of hyper-arousal and hyper-vigilance arise. Early-onset schizophrenia can be difficult to diagnose, to distinguish from typical play and imagination. But alarming symptoms like complete social withdrawal, bizarre hygiene rituals, or a pronounced lack of impulse control, should be apparent.

I’d been obsessed with Frankenstein for years. I studied every photo I could find of Karloff’s classic incarnation and read every article about make-up artist Jack Pierce’s design. I hadn’t seen the movie, mind you, but Dad said we could watch it together on the midnight Creature Feature. A rite of passage. I was eleven.

I spent weeks working on my costume. I bought an ill-fitting suit coat from the secondhand store and buried it in the backyard. Dad took a styrofoam insert from a packing box and sculpted it to fit my head. He drew the pattern of my tiny feet on a 2×4 and cemented the soles to my waffle-stompers. We made balsa wood neck bolts and stuck ‘em on with spirit gum. Ladles of grease paint and face putty later, I was the spitting image of Mary Shelley’s creation, all towering five feet of me, boots to cross-stitched brow.

I aped the creature’s movements as I’d seen on the playground: knees locked tight, arms outstretched, back arrow-straight like an ironed somnambulist. I heard he couldn’t speak, that he only grunted, so I found a grumpy dog noise in my throat and growled. Not one “Trick or Treat!” uttered at the neighborhood porches – they got 100% method acting genius. I couldn’t think about candy anyway. I was counting down the minutes ‘til midnight, when the network host in the Dracula cape would greet nocturnal newbies like me, welcoming us to James Whale’s 1932 masterpiece. Tonight was mine. I would finally be a real boy.

Our jack-o-lantern flickered in the corner, and the kids were nestled snug in their beds. Dad made us popcorn and root beers. The living room was our cathode cathedral. My heart raced. I couldn’t sit still. But as the first scenes unfolded, profound feelings of anxiety and emptiness began to creep in, followed by shortness of breath, pain in my chest, and the overwhelming terror that I knew too well. It wasn’t the grave robbers. It was the unspeakable private horror show that I had lived in since I was four.

The room melted into blackness, the sound of the TV grew faint below my heartbeat. I was frantic. I couldn’t find my name. I couldn’t find my dad.

“Papa? Papa?!” I tore at my bathrobe. I hit my face. I couldn’t stop hitting. “Papa! Help me!”

I was losing myself, my sense of self, the person I was, me. Orphaned in a cavern of dissociation, unable to tell him what was wrong. He couldn’t help. He didn’t know. About the teenager in the garage. The mother in the nightgown. The stranger at the motel when the grownups were out for drinks. Real monsters.

Data regarding the relationship between childhood trauma and the development of psychosis shows that victims are three times more likely to develop schizophrenia than children who have not been abused, and up to fifty times greater in cases of severe traumatization. There can be a direct correlation between the type of trauma experienced and specific symptoms triggered. Paranoia, for example, would be associated with neglect, depression with abandonment, and hallucinations with childhood sexual trauma.

Pediatric schizophrenia is rare, appearing only in about 4% of total cases of children under age fifteen, and about 1% in those under ten. The stigma attached to schizophrenia, especially in children, prevents most families from having their child diagnosed when behaviors of hyper-arousal and hyper-vigilance arise. Early-onset schizophrenia can be difficult to diagnose, to distinguish from typical play and imagination. But alarming symptoms like complete social withdrawal, bizarre hygiene rituals, or a pronounced lack of impulse control, should be apparent. Learning to differentiate between normal and deteriorating behaviors could save a life.

I wear a mask, even today. It’s safer under the paint and the wig and the bolts. I am a composite of symptoms and strategies. The words that fall out of my mouth can be awkward. I walk like a broken robot. I stare at the world through blank eyes, a reanimated man, someone who died a long time ago, resurrected below the electrical secrets of Heaven, reborn in a storm of Tesla coils and lightning.

Wiping the tears from my eyes and wrapping his arms around me, my Papa pulled me to him and helped me find my way back. He saved me from the boogey man that night, but not from my own future. Because I never talked about it. He died never knowing my dark secrets. I wish that I had been brave enough to share my story with him. Please, share yours with someone you trust. Don’t let the monsters under the bed keep you from sleeping. You are worth every treat that this life has to offer.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Travels

It’s the people I meet when I travel who give me the strength to keep on doing this. My favorite part of being an ambassador for BringChange2Mind is meeting the people who come up to me after I speak. It’s for them and the others I meet who make traveling bearable.

I’m sitting in the airport again.  This time because my flight from Omaha was late getting to Denver. I don’t really mind. I can chat on the phone, I can browse the book stores, I can eat, I can even work on my book if I want or need to. Being stranded is a bit like being in suspended animation; my life stops. I become a voyeur, I get to walk much farther than I would normally at home. Let’s see, what else? I love watching people but I already mentioned that. I love browsing at the sparkly cart where I could buy a sparkly hair comb for $59 dollars, but I won’t.

Just now, as I was walking down a long hall, avoiding the moving floor because I have a lot of time, I thought I saw Edward, a friend and artist I know from Bozeman days.  I was just about to stop him but realized quickly that if it was Edward we would simply stand in the middle of the corridor, after a hug, then make small talk.  An airport is filled with small talk and I didn’t want to contribute to it, so I kept on walking. What is small talk anyway? Talking of small matters I guess; it’s not as though you would see an aquaintance in the airport and launch into your entire emotional history right there on the spot! But, on the other hand, I remember taking a train once from Connecticut into the city and I sat next to a good looking man. We spent the hour telling each other all our deepest and darkest secrets. He got off at 125th St., I got off at Grand Central. I never saw him again. That was fun!

Just now I saw a woman two rows away from me who I thought was my friend Suzy. I stared at her, she turned her face toward me and, it wasn’t her. I guess it’s not a stretch to realize that with so many humans around a few, at least, are going to look like someone you know.

I dislike talking to the person next to me on a plane. It’s bizarre that we sit closer than we usually sit next to our loved ones, touching shoulders because we can’t help it, watching each other eat and drink! I always make a point of putting the arm down between us and then grope around in my bag to find my book. Sitting so close to someone I don’t know is difficult. I’m used to being quiet, used to lots of space.

When I wasn’t well there were many times I pretended to be in a bubble when I left my house. I remember finding it extremely difficult to stay in a room filled with people, such as at a party or family gathering. I discovered, in my twenties, that a rest room was the place I could go to gather my wits when overwhelmed by people. I suspect others have adopted rest rooms as places to catch one’s breath. In airports the restrooms are the only places where no one can see you. I’ll sit and put my head in my hands and breathe, breathe, breathe.

There’s something disconcerting about how quietly we in the west stand in line. I’ve lived in Africa and India and those lines are anything but quiet! We stand, obedient to the officials officiating. And it seems that the bigger cities attract the quietest lines. No? I like walking into the depths of the Denver airport where one very long room houses the Gates for a myriad of small cities, towns really, from the Dakotas to Montana and Wyoming, Idaho. It’s noisy and friendly down there. Then, as comparison, walk up to the Gates where people are waiting to board planes for New York, San Francisco, Houston. People are waiting, quietly, working on their laptops, not visiting.

It’s almost time to be at my Gate, to stand in line and give the airline person my boarding pass. I’ll get back, find my truck in the parking lot, drive home and be so very glad to be in the woods again, with my creek. It’s the people I meet when I travel who give me the strength to keep on doing this. My favorite part of being an ambassador for BringChange2Mind is meeting the people who come up to me after I speak. It’s for them and the others I meet who make traveling bearable. Because, just think of it: we gather in huge buildings, single file into long metal tubes and fly hundreds of miles in a short time, then file out again, without getting to know each other. How very strange! Snitz, my Emotional Support Service Dog will be with me on my next trip. And that’s a whole other story!

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Arc Reactor

Avolition is defined as a pronounced restriction of initiation and production of meaningful goals. The word literally means “poverty of will.” It is one of the five main negative symptoms of schizophrenia, often mistaken for laziness, disinterest, or ennui. When avolition’s driving the bus, I can want to do something, but I can’t figure out how to do it or why I should. I lack the energy or power to make it happen. As a result, I miss out on life. I miss out on me. I don’t realize there’s a hole until I can’t find the shovel.

I really wanted to go to the ballgame. I’d never been to the new sports arena or seen our home team play, except on television. People had been excited all summer long. The city was celebrating its entry into the championships. Imagine my surprise when a coworker offered me a free ticket.

“Dude! I’ve got box seats for Friday night’s game. My wife’s invited a single friend of hers, so we could call it a double date!” He was so stoked. “It’s gonna be awesome! Whaddaya say?”

A chance to see our boys on a winning streak? Playing against one of the nation’s best and most beloved teams? A night out with a girl my buddy’s spouse had chosen with me in mind? How could I possibly decline an offer like that? Easy. In a word: avolition.

“I can’t go. I’m not doing anything Friday night.”

He stared at me in disbelief, as if I’d deliberately snubbed him. Like too many times before, I had unintentionally withdrawn from socializing and lost a chance for friendship, community, maybe even romance, because I said no when I wanted to say yes. But I couldn’t. And I didn’t. True to my word, I stayed in. Because I couldn’t comprehend what “going out” meant. I was pretty sure I’d gone out before, I’d accepted free tickets before, I’d even gone on a blind date before. Understanding the rhythm was not the problem, comprehending it was. I understand that somewhere people eat haggis, but I’ve never seen it on a menu.

Avolition is one of my more confusing symptoms, especially for my family and friends, because it appears as if I just don’t care. This is not by choice. A comorbid symptom, avolition is defined as a pronounced restriction of initiation and production of meaningful goals. The word literally means “poverty of will.” It is one of the five main negative symptoms of schizophrenia, often mistaken for laziness, disinterest, or ennui. When avolition’s driving the bus, I can want to do something, but I can’t figure out how to do it or why I should. I lack the energy or power to make it happen. As a result, I miss out on life. I miss out on me. I don’t realize there’s a hole until I can’t find the shovel. Again, it’s not by choice.

In the symptomology of schizophrenia-spectrum disorders “negative” doesn’t mean grumpy, pessimistic, or gloomy. Negative in this context means that from time to time I will be unable to enjoy my hobbies, music, social interactions, art, food, or sexual activities because my mind interprets them all as joyless or dreary, and the “half-full or half-empty” cup isn’t either one. Try as I may, I can’t even find the cup, let alone have a context for the existence of said cup. Which sucks if I’m thirsty for water, coffee, juice, laughter, friendship, family, or love. Simply put, I’m blank. I am not there. I don’t get to be there. But you are. Our culture is. And it has a choice. I understand that people can become over-saturated with information regarding social awareness where discrimination of any kind is concerned, but apathy and cynicism should never be on the menu.

So. Advocacy. While I’m sitting in a chair with nothing outside the window but more nothing – and no idea why it’s not there or how it came to be, or if I even care about the window or the chair or the sitting – I have this undeniable craving to text a friend, call my sister, make holiday plans, play a video game, rent a movie, take a bath, eat, sleep, run. I have a determination to get involved and stay involved. I have a voice, a story I want to share. I’ve got experience, strength, and hope that I long to convey, to let someone else, like me – sitting in a chair somewhere with their own nonexistent cup – know that they aren’t alone, but that if they were, it’s not their fault, that they don’t have to take it lying down, and that there’s no dignity in letting the bullies win while we just wait for the cup to materialize. There is a solution.

Since negative symptoms are directly attributable to schizophrenia itself, they will always be a part of my life. This fact won’t change. I accept that. Unfortunately, there is no clinically validated treatment for avolition, so I came up with a personal fix of my own: I make a commitment and don’t allow myself an excuse. I create a choice.

In the words of Tony Stark, the Iron Man, “It’s not about me. It’s not about you, either. It’s about legacy. The legacy left behind for future generations.” Suit up and show up.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Doctor, Doctor Give Me the News

In the years leading up to my official diagnosis, I’d been on a journey to find out what was wrong with me. Going under the assumption that anyone with expensively framed degrees made them qualified to evaluate, diagnose, and treat whatever was causing my consistent dark thoughts, extreme anxiety and suicidal thoughts, was, to put it mildly, a big mistake.

In the years leading up to my official diagnosis, I’d been on a journey to find out what was wrong with me. Going under the assumption that anyone with expensively framed degrees made them qualified to evaluate, diagnose, and treat whatever was causing my consistent dark thoughts, extreme anxiety and suicidal thoughts, was, to put it mildly, a big mistake. From what I now know, I have a classic textbook case of dysthymia, Major Depression and General Anxiety Disorder (GAD).

It seems pretty straightforward and I would guess simple to diagnosis, considering it’s not a rare form of mental illness.  If only there were online tests for depression when I was struggling to get answers, I probably could have saved a lot of time and a ton of money, going from doctor to doctor without any formidable solution for my emotional pain. The mental health providers and doctors I went to never even mentioned the word depression during our appointments.

Stress over exams, or expecting something bad to happen to me, supposedly explained my anxiety, even though nervousness and chronic anxiety are not the same things. From my late teens through early 20’s, therapy meant talking to a “highly esteemed” professional about my crying outbursts, insomnia, warped body image, lack of confidence and self-worth. I always left with the sense that I’d wasted time. Putting blame on myself for not even getting therapy right, I’d walk out of each session frustrated and feeling worse – validating my belief I was worthless.

After a decade of my symptoms worsening, I finally found a psychiatrist who realized that I had an illness that required professional treatment. By then, I was so worn out and plagued with dreadful images of death.

I can only chalk up how I managed to earn my BA degree, have a successful career, good friends, and a social life to the months of relief when my symptoms were not as severe, and an innate survival instinct. The new psychiatrist spent hours gathering info on my past, and she was the first to prescribe medication for my Major Depression and GAD. I was relieved, but terrified of taking drugs. I didn’t know how I would react to these green and white capsules. Would they really help? What did needing medication say about me? I felt like a failure. The stigma and shame of having a psychological problem I couldn’t cure on my own—without pills or talk therapy—was fierce. I kept the news of my medicinal tryouts to one close friend, and a few family members.

When the anxiety medication began to work right away, it left me baffled.  I was doing all of the things I did before, but without the dizziness and panic that encumbered my daily life for as long as I could remember.  The anti-depressants took three weeks to work. I woke up one morning without the ball and chain around my neck. For the first time in two decades, life was starting to look promising. Over the following 12 months, I had to tweak the dosages, under my doctor’s supervision, until we found the perfect recipe. That was the same year I received a handwritten birthday card from my pharmacist.

Sadly, I’ve heard similar stories from people who also weren’t properly diagnosed and thereby not treated for large chunks of their lives. I used to dwell on all of years I spent in virtual hell and chastise myself for not pushing harder to find help sooner, until I realized that the illness was still in control if I kept on playing useless mind games.

Instead of getting angry about losing time, I’ve mentally separated my life into two eras – BD and AD – Before Diagnosis and After Diagnosis. For anyone who has had a heart attack, stroke, or cancer, there’s a good chance that these life-changing illnesses have divided their lives into pre and post, too.

There’s not a thing I can do to change what happened before my diagnosis. Whenever I’m having a bad day, my mind automatically goes to if-onlys – if only I had been diagnosed sooner. I’ve learned to stop. I refuse to allow my diagnosis to define who I am. I’m a worthwhile human being who happens to have a mental illness.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Gothic Mirage

The day I was diagnosed with schizophrenia, I decided not to rest for a moment. I wanted to learn everything I could about my disorder, to understand what courses I could take to manage my symptoms, and to express to others my drive to survive.

I hit the alarm and awaken to a bizarro-world desert island scenario, stranded in a tiny, shallow, pool surrounded by endless miles of sand, with only one thing on my mind: gravity. A fundamental interaction of nature, gravity is defined as the phenomenon by which all physical bodies attract one other. It is also defined as an experience of extreme or alarming importance. Gravely serious stuff.

When my second stepmother received her cancer diagnosis, she did the bravest thing I’d seen a person do: she educated herself. What she didn’t know, she researched; what she learned, she shared with us and others. I took my cue as an advocate from her. The day I was diagnosed with schizophrenia, I decided not to rest for a moment. I wanted to learn everything I could about my disorder, to understand what courses I could take to manage my symptoms, and to express to others my drive to survive. My stepmom made it her mission to leave this life stronger, more alive, and more accountable than when she lived it. She set an example.

Suffice it to say that my father was attracted to strong women. Support, humor, commitment, and respect were the ideals that formed the cornerstones of his relationships. I watched from my tiny island as my siblings followed his lead, creating meaningful bonds with their partners, their children, and their community. Robot Tarzan, me, astutely observant, accurately imitating, but never quite achieving, I did what I could: I put a message in a bottle.

Like any human being, I crave contact and connection. I long to know that lodestar I watched my family members follow. I can educate myself, but where relationships are concerned, it’s like trying to teach the dog to speak. Bark is for trees. Arid winds howl. Children of the night – what music they make.

Attachments are something which I understand but cannot comprehend. Complications with them are not unique to those diagnosed with a mental illness; brief attachment challenges can happen to anyone. People who have felt the security and safety of healthy parental attachment in their formative years tend to feel more secure about themselves, and they carry this strength into their relationships. However, when either one parent or the other is neither attentive nor accessible, a distortion in one’s ability to feel secure can create a template for unhealthy or compromised attachments in the future. The ability or inability to form bonds begins with one’s relationship with their initial caregiver.

The experience of attachment is compromised in most people living with schizophrenia, due to the symptoms of social withdrawal, delusion, or avolition – in lay terms: acute isolation, unrelated fears, and involuntary apathy. Disordered thinking breaches the continuum of attachment, and a relationship – which is naturally desired and essential – becomes more unrequited than zombie love.

With each new scintilla of data I feel ever more armed and able to dig into this disorder with fervency. Still, becoming informed does not make me instantly capable, nor does it mean I’m immune to social missteps. I want to connect, but I can’t make sense of it. I don’t know where I end and you begin. What comes so easily to socially healthy people seems as foreign to me as opera to a fish, as gods to monsters.

I tell myself that I can’t meet anyone because I’m undesirable, when in truth the only thing standing in the way of my meeting the right girl is my mental illness. Some days that’s on me, others on her, but more often than not, it’s an obstacle for us both. I get it. In the eyes of the town cryer I wear the hockey mask, the razor glove, the Texas chainsaw, the gun. And we both believe it – until love means more than what the villagers decree.

So let them storm the castle with their pitchforks and torches. We’ll be across the moat, up the crooked staircase, amidst the spiders and the cider – a monster and his maiden, all gowns and gothic and Shelley and shrieks. I’m happy to go bump in the night. I am afraid of nothing. When the riot starts we will be in free-fall. There will be no questioning the kinetic equivalence. Relativity accounts for the difference between what is observed and what is envisioned. Fire: bad. Friend: good.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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The Big Dipper and The Navy Yard

The recent shooting in the Navy Yard has everyone talking about mental illness again, a conversation we make after each tragic shooting. I mourn and pray for the families left behind. I heard, on the radio today, a military representative say that he doesn’t think mental illness should carry the stigma that it does, that if someone isn’t well they shouldn’t be afraid to get help.

I stepped out my front door around 10:30 last night. The moon, not yet quite full, lit up the landscape overhead and at my feet. A covering of gauze clouds painted the sky with broad, light strokes except for a long oval where the Big Dipper, my favorite constellation, lay inside a cloud frame. I was overcome with emotion; how could this be? How could these particular stars, drawn so beautifully and the dipper that reminds me of cold water on the hot prairie, how could they now be framed like this if it weren’t for me, especially me? I decided to not question the gift, which is progress in itself.

I may not question the gift, but sometimes, when my courage fails me, I question myself and my life-choices.  There is no health without mental health, it has been said.  I know this yet there are still times I think about stopping my medication, buying a quart of vodka and staying up all night drinking.   I know, too, that alcohol can be used to self-medicate, dulling the suffering of mental illness and at the same time, it can exacerbate the symptoms.  At times, it feels easier to sink into mental illness or anesthetizing it than it does to stay within the bounds of mental health.

But what would become of me? Firstly, I’d be giving up 12 years of sobriety – the hard fought, hard won freedom from addiction and the all-important positive changes in my self-esteem and in my relationships with my friends and family.  My relationship with myself has changed as well; I can love myself and my life in the face of the suffering and uncertainties in a way I couldn’t when I was drinking.

I look into my heart for who I am, who I am not and guard myself at those times of failing courage. It isn’t my moods that are sinister -  they don’t lie in wait for me. It’s me who can be sinister to myself, that person who yells at me from inside my head to give up, give in. It’s seductive.  But I’m not willing to lose so much and it’s the willingness to remain healthy that turns to courage in all of us who deal with mental illness. We’re a tough and resilient crowd!

I ran into an old acquaintance the other day and told him about Bring Change 2 Mind and he said that he thinks we all deal with mental illness of some kind. He also revealed he hadn’t been out of his house for four days, struggling with his own demons.  {{{{JESSIE – WAS ALCOHOL AFFECTING HIM?}}}  I’m grateful I can leave my house these days and feel fortunate that my work with Bring Change 2 Mind has been so critical in helping me move out of my former isolation and pain into a community of people who are moving forward with their lives in positive ways – no matter what mental illness deals them.

I have met many who resist mental health. They are the people who don’t ‘believe’ in medication. I used to begin sinking when I spoke to one of them; I would find myself embarrassed that I was taking medication, I would allow myself to think badly of my treatment, as though these people knew what was best for me. But when I stop and think about the immense difference between how I was then and how I am now, the embarrassment dissolves.

I know I’ve made the right choices for myself around medication and I am secure in that now.  The lure of the bottle also fades with the recognition of all I’ve gained from leaving it behind.  The only “Big Dipper” I need is my favorite one – the life-oriented constellation that I enjoyed last night.

Friends, family, my new Bring Change 2 Mind community and even medication play a role in my ability to remain steadfast and focus on my health.  Alcoholics Anonymous has also helped me stay sober. In addition, I have attended Dual Diagnosis groups and found them inspiring. To sit in a room full of people who are not only alcoholic but who are mentally ill as well is at the same time awe-inspiring and sobering (quite literally!). I have broken down and sobbed in one of those meetings and the understanding I found there was powerful.

I know I would not have been properly diagnosed if I still drank. That in itself is a reason to stay sober, one day at a time. I’ve made the commitment to stay sober until midnight tonight. I make another commitment if I’m awake at midnight, another in the morning if I was asleep at midnight. Perhaps some day I won’t make that commitment… but some day isn’t here and I won’t worry about it.  I’m stronger than the tug toward dissolution and devastation.

The recent shooting in the Navy Yard has everyone talking about mental illness again, a conversation we make after each tragic shooting. I mourn and pray for the families left behind.

I heard, on the radio today, a military representative say that he doesn’t think mental illness should carry the stigma that it does, that if someone isn’t well they shouldn’t be afraid to get help.  I couldn’t agree more.

Yet we also know that people who are struggling with serious mental illness may not be able to reach out for help – may not even be aware they are ill, or get the help they so desperately need when they are in crisis.   Our fragmented complex mental health system has broken down.  People break down.  The answer is not prison and restraints.  We need to continue to drive the dialogue in our society about open access to weapons of destruction, about the need for community-based resources for those struggling with mental illness and for their families and the role medication and therapy can play in early intervention.

I tend to not think about whether a murderer is mentally ill or not; I like to think of all the millions of us who are doing what we need to do for ourselves, our loved ones, in the face of mental illness. I bless all of us who struggle with thoughts of suicide, all of us who find ourselves in a fetal position but who still make the huge effort to find help. Murder and mental illness are not synonymous. The great strides we’ve made treating the mentally ill can be celebrated.  Stigma, and the fact that mental illness is misunderstood is slowly eroding. We need to shout out our support of each other.
These are the thoughts that I think as I remember my evening with the Big Dipper, which reflects my connectedness with nature, family, friends and the beautiful community Bring Change 2 Mind is building.   It is the triumph of the spirit over suffering, of love over hate, of courage and resilience over fear that leads me to call everyone to Pledge to the Bring Change 2 Mind Principles, which Glenn and I created.  If you re-read the Principles, you will find the ways we can care for one another in moments when we are vulnerable or unable to help ourselves.

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Gatekeepers

The familiar sensation of being outside of my body is amplified by a lack of dimension typically assigned to my everyday surroundings. I am here, but I don’t know where “here” is. Significance is not. I am being interviewed by an anonymous psychiatrist who will determine my eligibility for financial assistance by asking a series of standardized questions - questions drafted by people who likely never sat in my chair ...

No map, no vehicle, no highway signs or roadside diners, yet here I am in a hedge-maze for the huddled masses. One more strip-mall office lined with cookie-cutter paintings and industrial furniture mathematically placed to achieve Maximum Calm. I am anything but.

The familiar sensation of being outside of my body is amplified by a lack of dimension typically assigned to my everyday surroundings. I am here, but I don’t know where “here” is. Significance is not. I am being interviewed by an anonymous psychiatrist who will determine my eligibility for financial assistance by asking a series of standardized questions – questions drafted by people who likely never sat in my chair, never had to endure their unending list of calculated queries – designed to take my mind apart like a child in the basement with a Daddy longlegs and a tweezers.

It was over before it began, eighty-odd minutes longer than the weeks of sleepless nights I would’ve walked across hot coals to avoid. The exit door was a trompe l’oeil painting, the chairs constructed for Minimum Comfort. The lighting was set for mood-ring distortion. All of the weapons were pointed at me. Do you hear voices? Do you hear them now? What do they tell you? Do you do what they say? Were you ever abused? Do you know today’s date? Who is the president? How often do you bathe? How much do you sleep? What do you eat? Do you see things we don’t? What do you see? Do you know why you’re here? Do you know why you’re here?

I walked out of the office and into the washroom. I locked the door. Leaning against the mirror, I started to cry. I turned my face to the wall and beat my forehead against it. I slumped to the floor and curled up in a ball. Ashamed and afraid, but mostly ashamed. All I felt was alone. Profoundly alone. Do you hear voices? Are you hearing them now?

How could I be this person, this mentally ill person, this “non-person” who answers calculated questions conceived to assist the gatekeeper in deciding who goes to Heaven and who gets to eat dinner? Where’s the lollipop after the haircut, the Band-Aid after the scrape? Does the lab coat make the doctor omniscient? Does the sterility of the room reflect the purity of their thinking? Does this so-called sentinel possess the knowledge and experience sufficient to see past the coping mechanisms to the core of the person living with the illness? Can she see me without judgement, without prejudice, without assuming that her training gives her permission to accept or reject me based on a crab-net criteria that somehow magically separates the mollusk from the seaweed, the dinner from shoe leather, saint from sinner, sane from unsound?

Was that appointment a microcosm of the internal stigma I come up against every time I read or overhear words like certifiable, psycho, demented, or nuts? Was it my paranoid symptoms, or was the doctor already predisposed to dismissing me on a personal level? Was I just another contract job, an interruption in an otherwise predictable morning? Or was this the way it always is: one person talking, the other one listening? And how like this experience is our meeting for the first time?

Do I approach you with arms outstretched? Do you respond in kind? Knowing in advance that my thoughts can be disordered, will you hasten to don your Kryptonite lab coat? Does my being borderless and unfiltered prompt you to pick up your pad and pen? And me – can I get past my awkwardness and shame, or should I start scouting the exits? Who determines the next step, and which of us goes first? Can we be friends without the fears and look forward to discovering that – as in our grade school picture puzzles – “one of these things is not like the other?” Or has the world taken a coffee break and left us to figure out tomorrow on our own?

Questions are not weapons. Breathe in. Curiosity killed nothing. Breathe out. Pause for a moment…

…and take it all in. The furnishings, the paintings, the carpet, drapes, and sunlight. It is only a gate. What is waiting on the other side – either side – is more of an adventure than you or I could know. Until we learn to trust that the keeper just keeps, that the path is just a path, and the future is untold, our dreams cannot be met. We know why we are here. Together we know. Open your heart. Open the gate. I am right here, across the hot coals.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and courage work hand-in-hand to combat stigma.

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Back to Normal

I wrote this blog on September 11, 2013, a day when it was okay to be sad. Yesterday you were not judged for having outbursts of crying, or openly expressing anguish, grief, loss, anger or bewilderment. Yesterday, if you exhibited any of these normal human emotions, you’d have been hugged and supported with understanding and compassion. There was no stigma attached to feeling depressed and hopeless while walking the streets with a lost look on your face.

I wrote this blog on September 11, 2013, a day when it was okay to be sad. It was the anniversary of a horrific event in history, something that impacted the lives of everyone reading this now. Yesterday you were not judged for having outbursts of crying, or openly expressing anguish, grief, loss, anger or bewilderment. Yesterday, if you exhibited any of these normal human emotions, you’d have been hugged and supported with understanding and compassion. There was no stigma attached to feeling depressed and hopeless while walking the streets with a lost look on your face. It was okay to be you without the burden of being judged. There are legitimate reasons, excuses and rationale for feeling blue — as long as you realize that your free pass for your public display of despair expired after 24 hours — because today it is no longer acceptable.

Every year on 9/11, society allows us one day to be re-traumatized, to relive our personal experiences and to display our raw feelings because it makes sense to be sad. People won’t think less of you or view you as weak. We can shake our collective heads in unison to share our sorrow and bafflement on the anniversary of a day so shockingly life changing.

As someone who lives with chronic depression and anxiety, the double standards for when it’s okay to not be okay are unwarranted. On plain old regular days, when you already have an underlying depression and just maybe you’re going through a tough time on top of that, it’s not cool to weep in public. For people who don’t understand what it’s like not having the ability to just snap out of it, some think it’s fine to call you pathetic, selfish, crazy, lazy and fragile. Of course being painfully labeled does not help in any way. It only reinforces the stigma attached to mental illness. The irony is everyone I know who lives with a chemical imbalance is the opposite of those accusations. We are the strong ones who have to suck it up, put on a benign face, and keep it together to avoid the shame placed upon us. It takes an enormous amount of effort to pretend everything is dandy on a daily basis.

Throughout this journey I began a few years ago, to bust through the misconceptions of what life with a chronic, yet invisible, illness is like, I realized that there are thousands of people who hide behind the dark curtain forced on us by society.

Even though I am dedicated to changing the way people with a mental illness are treated and perceived, I still have trepidation when one of my blogs goes live, revealing yet another layer of myself — my thoughts, fears and insecurities laid bare for anyone who has internet access.

Yet it’s crucial to keep the conversation going so that it doesn’t remain taboo to talk about illnesses such as depression, general anxiety disorder, PTSD, bi-polar and schizophrenia.

Today went back to normal. All of the sadness and angst we were allowed to bring to the surface yesterday goes back into the closet, because today it’s not okay to show that side of yourself. In a world without stigma, we wouldn’t have to worry about being sad without a tangible reason, without it making sense to everyone. An explanation would not have to be made up on the fly. We wouldn’t have to keep our symptoms locked away making the illness that much more difficult. I wish it felt okay to not be okay, on any given day.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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This Season

Falling into depression, falling into a world of less light, falling falling away from the thick sunlight of summer. I don’t know how to suppress these symptoms of seasonally driven rhythms. In fact, there is nothing I can do about the planet spinning in and out of seasons.

My body is slowly falling into a pit. I look outside for encouragement and see only brown hills, clouds in the sky, and a low volume of water in the creek that runs by my house. I am comfortable hunched up in my chair. I don’t want to eat but my body is craving soup and grilled cheese. I will not give in to the grilled cheese but possibly the soup. Now is the time that the checkers at supermarkets notice their customers are loading up on soup and bread and red meat – all foods that go with this season. Fall.

Falling into depression, falling into a world of less light, falling falling away from the thick sunlight of summer. I don’t know how to suppress these symptoms of seasonally driven rhythms. In fact, there is nothing I can do about the planet spinning in and out of seasons.

A beautiful lime green bird just slammed into my kitchen window and broke its neck. Why now? Perhaps it was a kamikaze bird who didn’t want to give in to his flock flying south. Why do I always think I’m the only one who experiences these cyclical moods?  We who are driven by the rhythms of this earth are all affected.

International Bipolar Foundation is holding their free monthly mental health lecture with Dr. Michael McCarthy on Circadian Clocks in Bipolar Disorder in San Diego on September 12th, 2013, 5:45pm at Janssen R&D, 3210 Merryfield Row, San Diego, CA 92121. RSVP Required to:  ajacobs@InternationalBipolarFoundation.org

If I was going to be in San Diego on the 12th I would be at that lecture. Fortunately, all IBF lectures are recorded and available to view on their website. InternationalBipolarFoundation.org

I have known for a very long time that I am affected by the seasons.  April and September have always brought me to my knees. I have a theory that the change in the earth’s axis is what undermines those of us who’s moods are sensitive to seasonal changes. I read, in Kay Redfield  Jamison’s book, NIGHT FALLS FAST, that the geographical location does not change the mood of those of us who are susceptible to seasonal mood changes. I would be depressed in the fall or manic in the spring even if I lived in the Bahamas instead of the Rocky Mountain West. This was comforting information as I have been tempted to move to a more temperate climate to escape seasonal mood changes.

On a more positive note, I have been privy to birds eating autumn berries off the bushes and the air is beginning to hold that snap of cool so welcomed after the oppressive heat of the summer.  I will now have to be careful when walking in the woods as bears like those berries too.  I have yet to come face to face with a bear but they leave scat in the path, just letting me know what’s what.  I saw coyotes playing in the sagebrush the other evening and the ranchers are bringing their cows down from the high meadows where they summer.  As long as I keep noticing the positive changes of autumn I’ll get a handle on this depressed mood.  When I sink and have a hard time pulling myself up I will remind myself that I’m not alone, that so many of you experience the same autumn falling. We can hold each other up. Thanks for being there.

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Lightning in a Bottle

Physical illnesses are cruel. Witnessing the outward effects of a disabling injury, or the withering weakness from chemotherapy, we empathize. We don’t question what we see before us: our loved ones being ravaged by a lentivirus or malignant cellular growth. For a moment we consider our own mortality, but our brain immediately deletes that notion. Our going concerns become other-focused. We circle the wagons instinctually.

“What? No. We’re best friends. You don’t have schizophrenia.”

“We’ve worked together for years. You don’t have schizophrenia.”

Apparently, all it takes to not have a mental illness is to chitchat around the water cooler, or go glow-sticking with the Kandi Kids. What a relief. I wish the professionals who’d convinced me otherwise had used this formula for diagnosis and recovery. Imagine the breakthroughs if this equation were applied in the medical community.

“I’ve known you since high school. You don’t have diabetes.”

Takes on a different tone, doesn’t it?

Physical illnesses are cruel. Witnessing the outward effects of a disabling injury, or the withering weakness from chemotherapy, we empathize. We don’t question what we see before us: our loved ones being ravaged by a lentivirus or malignant cellular growth. For a moment we consider our own mortality, but our brain immediately deletes that notion. Our going concerns become other-focused. We circle the wagons instinctually.

My stepmothers died young. I watched cancer take them both. My first stepmom was a professional photographer. Her last roll of film was shot from her hospice bed in our living room, photos of me at the kitchen table composing music for her funeral. She was taller than me and heavier, too, before cancer’s incursion. By that afternoon, I could pick her up in my arms and carry her to the bathroom, help her wash up, and carry her back. In my arms. I weighed a buck-twenty soaking wet. She weighed even less.

“But…I’m your son. You don’t have cancer.”

It’s perplexing when every square on the Rubik’s Cube is white. You never know which side is complete. There’s no way to know where to start or when to quit. The answers are all questions are all answers. The Invisible Man has no reflection. Nor does Dracula, but we can still see him. Without context there is no connection.

We can understand depression because we’ve all been sad. We can understand anxiety, because we’ve all been nervous. We can offer compassion to those who suffer from these disorders because, to some degree, we have had similar experiences. We can relate. Their conditions are magnifications of our common emotional states. We find ourselves more tolerant of something we have shared. The culture circles its wagons most effectively when they find a common thread. Without it there is no glow. It’s just a stick.

Consider this: the Count bites a pachyderm and brings it to your house. You now have a vampire elephant in the room. You stare at it, but won’t discuss it. You turn to the mirror, and it’s vanished. We point at the conundrum, then we name it. Out of fear. We leave the wagons unattended, trays locked, seats in the upright position.

Crimes of passion, impulsive acts, a heartbeat lost to misconstrued thought. A nanosecond of confusion, loss of reason. This is as close as any person without a mental illness will ever get to psychosis. Temporary insanity – key word: temporary. Burden of proof. Shadow of a doubt. Shadows. Doubts.

Granted, correlation does not imply causation, but if the only experience the public has to draw on is being momentarily blindsided in the heat of an argument, then it’s no wonder that “madness” is so easily misunderstood, and “crazy people” become feared, vilified, and ultimately discriminated against. It’s good for sales. It’s also contempt prior to investigation. Burn the witch.

In a culture where intelligence – the ability to acquire and apply knowledge and skills – is valued above all else, where information is power, the very idea of not being in control of one’s thoughts is almost inconceivable, terrifying, its existence dismissed as inventions borne from the minds of playwrights and journalists, seductive in that it gives one an excuse to act out. But that’s where it stops. No one wants to be powerless.

An individual living with a thought disorder has no initial way to know that their brain is not telling them the truth. We all trust what we know. We know what we learn. We learn from experience. Experience informs us. So the intel is correct, even within the dream. Even when the dream dreams the dreamer. Yet we still hunt the monster under the bed. Because that thing can’t control its thoughts. It is free in a way that we only know when we’re under the influence, when we “get a little Cray-Cray.” Willingly. By choice. Tomorrow morning it’ll be aspirins and a hangover. Temporary insanity. We envy and fear the power of the uncontrollable mind.

I educate myself about my illness every day because information is power. It can be harnessed. Science continues to examine that white puzzle cube. There is a way to find color. There is hope for the Invisible Man.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and humor work hand-in-hand to combat stigma.

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Connection

Connecting with other human beings can be very difficult for me and for many living with mental illness. In my private life I rarely make a point to connect with people I don’t know. I live in a tiny house with four dogs and am an hour away from two of my children and many friends.

Connecting with other human beings can be very difficult for me and for many living with mental illness. In my private life I rarely make a point to connect with people I don’t know. I live in a tiny house with four dogs and am an hour away from two of my children and many friends. This self-imposed isolation has many benefits, the most important being the hours of silence I can share with my keyboard.

There are few activities I like more than writing and reading. One of my many husbands threw up his hands, when we were in a therapist’s office, and said, exasperated,  “Jessie’s idea of a vacation is lying on the couch READING!” This is still my favorite way of passing time when not writing. And my dogs don’t mind.

My little Service Dog – sub-heading Emotional Support Dog, Snitz, provides me with a valuable service when I’m out in the world. It’s Snitz who people approach. They pat her and talk to her and then look at me and talk to me – no patting allowed. Snitz provides a buffer that I appreciate. If I’m speaking to another mentally ill person they probably appreciate the Snitz buffer too because we can approach each other carefully. I’ll be traveling without Snitz in September because she’s still recovering, and limping, from her wounds inflicted by my neighbor’s huge dog and travel is hard on her. I’ll see how it goes.

A friend asked me the other day why I don’t like crowds. I told her that I can feel the energy coming off people and find that energy overwhelming.  I do my best with a few people or alone – with my dogs.

There are important times to dis-connect when out there in the world.  I remember years ago, when I was quite fragile, I attended a dinner party. After struggling to sit at my place and make conversation I bolted for the door.  I found a quiet stoop to sit on down the sidewalk from the party.  My future brother-in-law came out of the restaurant to find me. I will always love him for what he did next; he did nothing. He squatted next to the stoop and didn’t say a word.  Somehow he knew just what I needed: quiet.  Most people don’t have that kind of sensitivity.

If I’m surrounded by family or friends I disconnect early in the evening and retreat to a quiet room to read.  I take my meds at 8pm every night and this act of habit wraps me in a routine that no one interferes with.  But, and this is a big but, I do love movies and if there’s a movie playing I’ll just dash to my meds, take them and return.  Movies are my weakness!

Connecting and dis-connecting are both important concepts for those of us living with mental illness.  I have found that I don’t need to broadcast the fact that I live with mental illness to those I encounter in my life. Friends and family (and you readers) know and they’re the most important people in my life.  I love where I live and I love being able to dip in and then out of the city an hour away where two of my children live.  I get a tingle of excitement when I approach the city and a rush of relief when I leave. I am very connected to the world through my computer and phone as I guess most of us are these days. I love the quiet of email.

I have found where I function best and that’s in the mountains. Here’s to everyone finding their best place and learning when to connect and when to dis-connect.  These are important concepts for controlling your mental illness and living a full and satisfying life.

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Shipwrecked

My very first anxiety attack occurred when I was eight years old. We were on a family vacation at Disney World. The pictures from that trip—now faded and worn—reside behind a sheet of plastic in an overstuffed photo album. My younger sister and I donned Mickey Mouse ears while squinting from the sun in front of each ride.

My very first anxiety attack occurred when I was eight years old. We were on a family vacation at Disney World. The pictures from that trip—now faded and worn—reside behind a sheet of plastic in an overstuffed photo album. My younger sister and I donned Mickey Mouse ears while squinting from the sun in front of each ride.

We indulged on pink cotton candy and soft-serve vanilla ice cream cones dipped in rainbow sprinkles as we made our way through the Magic Kingdom. I remember the excitement tingling in my stomach the moment we saw a ride we’d seen in the brochure before our trip. Holding hands, my sister and I skipped together towards one of the main attractions at the theme park—The Submarine Voyage. Built to mimic the experience of riding in a submarine, without being submerged in water, the vessel floated atop a lake. As a girl who loved going on boat rides, I was positive that The Submarine Voyage was going to be the highlight of my trip. But, everything changed when I took my first step down into the boat. Still holding my sister’s hand, I was crammed inside with dozens of strangers surrounding us.

After a few steps further down, we began to walk forward inside the narrow sub. Moving along with the flow, I turned around to see if my parents were close by. As I did, I noticed that on the other side of the round porthole was water! At that point, I let go of my sister’s hand and tried to make my way back to the entrance. The crowds of people walking forward blocked me from escaping the sinking ship I thought I was on. Terrified that we were all going to drown, I cried desperately while trying to make my way back to the entrance, pushing as hard as I could against walls of people.

A wave of fear took control over every motion I’d made. Convinced I was going to faint or drop dead, I began to scream “Let me off, let me off! I need to get out! I can’t breath, there’s no air, let me off!” But my attempts at reaching the entrance were squashed by the crowd and my screams went unheard, drowned out by the noise of chatter within the airtight cabin.

With sweaty palms, a tightened throat, and wet face, I finally emerged from the ship through the exit, with a rash of hives covering my arms. I found my mom, latched on to her leg and begged to take the monorail back to the hotel. Whatever else we had planned for the day was cancelled. I was done with Disney, submarines, crowds, and small spaces.

There would be several more anxiety attacks throughout my life, yet it’s always that one, that first one that I remember most. I’ve had to learn to overcome, or at least cope with, my anxiety of closed in spaces, while living in a city where the main mode of transport is a jam-packed underground subway.

In therapy, I discovered that there are special breathing techniques, as well as “thought-corrections” to avert an anxiety attack if I feel one coming on. But still, there are some things that I will do my best to avoid, such as sitting in the backseat of a two-door car. Just thinking about it can bring on that panicky “I need to escape” feeling. In the real world, there are times when I must face my fears without allowing them to interfere with my life. If only I could live in a magic kingdom where nothing frightened me. Ah, but I think that’s called the Land of Make Believe.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Being Worthy

I’ve been thinking, on this blustery, wet day, what it is that makes us feel worthy. I have felt un-worthy for a good part of my life, the part that wrecked relationships and hurt my kids. I don’t wreck things anymore but feeling un-worthy still lingers. I think this feeling is attached to self-stigma and shame.

Rain and hail just pelted my little house. The sky has been gray all day, clouds looming over the mountains. Snitz, my tiny Service Dog, is huddled behind me on my desk chair. Poor Snitz was attacked by a HUGE dog about a week ago and is taking a very long time to bounce back. She still has stitches that will come out in a week and still can’t jump up on the couch. She’s very self-sufficient and has a hard time allowing me to help her. But she’s worthy of help and unquestionably worthy of love.

I’ve been thinking, on this blustery, wet day, what it is that makes us feel worthy.  I have felt un-worthy for a good part of my life, the part that wrecked relationships and hurt my kids.  I don’t wreck things anymore but feeling un-worthy still lingers.  I think this feeling is attached to self-stigma and shame.

When my daughter, Mattie, was born in 1991 I was forced to ask for help. I was a single mom with two little boys and a baby and it was because of them that I asked for help. I didn’t find myself worthy enough to reach out for support, but I knew they deserved what they needed.

It raises the question: how do we become worthy of help and love? My Thesaurus defines “worthy” as guiltless, blameless, honest, decent. Surely Snitz fills the bill, but me? I don’t feel worthy all the time and when I do I tend to brush it away, treat it like I must be mistaken, taking humility way too far.

A friend of mine told me a while ago that she noticed I really don’t like talking about myself. This is true. Perhaps I don’t like talking about myself because if I talk about my accomplishments my opinion of what I’m saying is always shrouded in shame. I’ll end a sentence by saying “but it’s really no big deal” when to me it really is. So why can’t I stand up and say I’M WONDERFUL? Because if I say I’m wonderful I don’t end up with the more familiar “comfortable” feeling of minimizing myself.

Deception of self is probably one of the most difficult hurdles to overcome when in remission from mental illness. I can see that I’m getting better, I trust my medication and use it properly, I have mended broken relationships, but still, I cover my feelings with shame. I feel that I’m not worthy of happiness because of all the awful things I did in the past.

Could it be possible that feeling worthy would take away the nervous pit in my stomach and the anxiety of being around many people? The season for traveling and speaking is upon us and even though I have a month before I have to go anywhere I am already feeling the angst of travel and crowds. Perhaps feeling worthy would act like a magic wand and take away my nervous stomach. Perhaps feeling worthy would allow me to believe that some people actually want to hear what I have to say. I don’t behave as though my self-stigma is lodged in my heart but perhaps the self-stigma would dissolve if I could get over the hump of feeling un-worthy.

Just because a stranger looks happy, behaves happy and sounds happy it doesn’t mean that the stranger is happy. We all put on a public face at times, even when we are struggling inside. Regardless of how I am feeling I try to look people in the eye and shake their hand firmly when I meet them. It is one way of affirming another person’s worthiness – a gesture of honest respect. What goes around comes around. Perhaps being a decent human being is all we need to do to spread worthiness around.

Snitz has no trouble telling me what she wants and what she wants to do. For now I’ll take a page from Snitz’s book and feel brave, worthy and stubborn until the next time I sink. Perhaps, with practice, I’ll discover that I am worthy and worthy enough to reach out for help during difficult times.

“Being Worthy” was edited by my dear friend, Karen, who exemplifies worthiness.

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Uncharted Territory

The role that family plays in the treatment process is crucial, beginning with education about their loved one’s illness. Research shows that proactive involvement by family and friends increases the odds for a positive outcome, resulting in better symptom management and fewer psychotic breaks or trips to the hospital. Establishing a sense of family and a network of friends is essential to recovery.

My dad died in 2009 from Creutzfeldt-Jakob disease, an incurable and fatal neurological disorder. I never got to share my diagnosis with him, or the progress that I’m making today. I think he would be proud of me. I believe he’d be a huge supporter and advocate, going on NAMIWalks with me, attending therapy occasionally, and helping with the logistics of financial and medical well-being. I know it would be that way today, but it wasn’t always like that.

My first major episode occurred during college. My girlfriend found me in the corner of my studio, drowning in tears, chattering gibberish, desperately trying to convey the terror of my internal world. I was painting ’round-the-clock. I had stopped eating. I’d crammed my band’s PA system into my tiny studio. There was no space left for Voices or Notions. I’d secured the perimeter with frenetic art at nosebleed volume. I thought I was safe. She knew differently. We got in the car.

The dreamless façade. Restraints and medication. Fearing nothing. Vaguely aware that we had only temporarily traded acuity for thickness. Days later in my studio, alone with my typewriter and linseed oil, the Voices insisted that poison came in many forms, and that people were not to be trusted. Mutiny on the SS Henry Boy. Keelhauled in my tiny room. Imprisoned in silence and shackled in shame. I left school. I was never going back to the hospital. Not while there was art to be made.

Bathing in glamorous shenanigans and high-heeled boots, I had beaten the post- college odds. I was in the trade papers and on the radio. I worked hard and I had arrived. So had my brother – in dad’s company car. His teenaged job was courier, my father’s message simple: voluntarily commit myself to a local asylum. I listened as he read my father’s fears that I was a danger to myself, that I lived in a delusional state, that my career path was ludicrous. He told me I would be disowned if I did not comply. The intentions were correct, but the delivery system was a hammer to my heart.

I didn’t want any part of a family that didn’t understand me, who couldn’t see that I was Chosen, and not Aladdin Sane. The art world accepted my so-called quirkiness – they could be my “family” from then on. I didn’t speak to my father for some time after that. I missed his journey through recovery and sobriety, he missed my rising star. I fell again. Harder each time. I turned to self-harm and suicide attempts for answers to a problem I did not believe I had. I never understood that I needed help.

People with schizophrenia, Alzheimer’s, and borderline personality disorder share a common cognitive dysfunction called anosognosia – the inability to recognize that their illness exists. They aren’t being contrary. The dysfunction renders them incapable of believing they are ill. Attempt to convince them and they will likely withdraw further into their illness. The one they can’t see. Where is the map? And who will help read it?

Family. Chose your definition. It’s about love.

The role that family plays in the treatment process is crucial, beginning with education about their loved one’s illness. Research shows that proactive involvement by family and friends increases the odds for a positive outcome, resulting in better symptom management and fewer psychotic breaks or trips to the hospital. Establishing a sense of family and a network of friends is essential to recovery.

In cases where noncompliance with medication is the issue, intervention may be necessary. Involuntary hospitalization and care may be the best course of action. But in those cases where the individual is willing to seek out voluntary treatment and participate in various therapies, a sense of self-esteem and meaningful involvement with others can often help provide insight into their illness and improve their mental health.

My dad sat with me on a park bench in the summer of 2006 and listened. I opened up to him about my secret life. He listened. I talked about my divorce and the threat of losing my job, about wandering the streets at night alone. He listened. I talked about fighting demons, sleeping at bus stops, eating out of garbage cans. It broke his heart, but he listened. He supported my choice to seek treatment and therapy, offered to help in any way he could. He had done his homework. My art had never saved the world, but my papa helped me save my life. He listened without judgement or blame. He unfurled the map and helped me plot my first course. If he were alive today, I think he would be proud of me. It will always be like this.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and humor work hand-in-hand to combat stigma.

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Vacation

Does vacation conjure up all sorts of horrors for you? How about when you’re supposed to be having a great time but your mood didn’t get the message? A dear friend of mine, and fellow bipolar person, told me a story about having nine guests at her cottage for over a week. I shuddered.

Does vacation conjure up all sorts of horrors for you? How about when you’re supposed to be having a great time but your mood didn’t get the message?

A dear friend of mine, and fellow bipolar person, told me a story about having nine guests at her cottage for over a week. I shuddered. My mom came to stay with me for five days and I didn’t realize the stress until she was gone and I collapsed.

These reactions to loved ones or friends, (notice that friends aren’t always loved ones), have really nothing to do with love or friendship, they have to do with stress and the sometimes awful feelings we have when under stress.

My friend also told me about how often our psychiatrists, psychologists and the others that help keep us steady go on vacation during the summer, especially in August. I didn’t believe her. Then, when on the phone with my psychiatrist for our check-in, he told me he was going on vacation and would be gone for a while so I wouldn’t be able to talk to him even if I needed to. She was right! I had to laugh, luckily, and am fine with my psychiatrist going on vacation. But are all the doctors gone in August? I certainly hope not!

If you have a houseful of guests the best thing you can do for yourself is to have a room where you can retreat. If your mood lowers make sure you have all you need, like a good book and a glass of ice tea, and retreat. If these are real friends they’ll understand. Try not to feel guilty for taking care of yourself. Stigma can land all of us, mentally ill or not, into a dark place not of our choosing. I can pretty much guarantee that you nor I decided to become mentally ill because there wasn’t anything else going on. Right?

Make sure you have plenty of food in the house. I have a hard time buying food and the only thing that makes that less torturous is having someone along. Your guests could arrive at your house when your fridge is empty. Ask one of them to come along. If you have six guests you could even have a group parade into the market, each person concentrating on one heading, like ‘bread and crackers’ or ‘fruit and vegetables’ or meat. How fun would that be? I think it would be great fun! When you all returned to your house you’d have enough food for a week and it would even be fun to see what each person chose.

And don’t try to be super host; allow them to cook for you. I become confused when there’s anyone around when I’m cooking. I don’t know how people make conversation while measuring. Perhaps I have a single-purpose mind. That’s okay! Perhaps you don’t. Perhaps you even like to cook. Don’t let that crowd of people confuse you. I got my friends to know that if they wanted to come over for dinner they would get pizza and I don’t mean homemade. I would order from whichever pizza place had the best coupons for the week. But you can’t order pizza for a week for every meal so you’ll have to delegate. Two people could cook breakfast, two for lunch and two for dinner, or something like that applied to how ever many people you have in your house. If I’m doing dinner I can still order pizza!

So, take care of yourself!!!  I’ll report back, at the end of August, how many people I had land on my doorstep. I suspect zero. I think my friends are tired of pizza.

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Stepping Outside Our Comfort Zone

I consider myself to be somewhat of a veteran in the world of mental illness. For the past 10 years my family has been immersed in children’s mood disorders as first one and then another of my three daughters was diagnosed with bipolar disorder.

I consider myself to be somewhat of a veteran in the world of mental illness.  For the past 10 years my family has been immersed in children’s mood disorders as first one and then another of my three daughters was diagnosed with bipolar disorder.  We’ve been through the medication changes, the search for doctors and therapists, numerous hospitalizations, residential treatment; we’ve navigated the school system and deflected the stares and suggestions that our parenting skills were the root cause of our daughter’s out of control behaviors.  Mental illness is definitely in my comfort zone.

But recently, I have been rethinking my self appointed veteran status.  I’ve come to realize that my comfort zone is just that – a zone that keeps me ‘safe’, thereby limiting my ability to learn, to grow, and to be a true advocate.

Last fall I was manning a booth at a fundraiser for a local mental health organization.  People stopped and chatted, picked up a flier, asked a polite question or two.  A middle aged woman approached, rather disheveled and disorganized, and began telling me her story. The conversation was one sided, disjointed, jumping from one topic to the next. She was disabled, out of work, she had held a high level position for many years.  Now she was at risk of losing her housing, had no insurance, her psychiatrist would no longer see her, she was faced with choosing between medications for her asthma or medications for her bipolar disorder.  She couldn’t afford both.  Her name was Shelley.

I could feel the discomfort rising in me.  Was it her instability?  Her situation?  My own limited experience? Heck, I was great with children’s issues but what on earth did I know about homelessness and unemployment?  She moved on to the other display tables.  Another person at my booth remarked that Shelley seemed manic and suggested that perhaps some of her story might be fabricated or embellished.  I wondered if they might be right.

A while later Shelley stopped back.  This time I forced myself to push aside my discomfort and sat down with her and listened.  The more I listened, the more my discomfort dissipated and the more I became angry with the quagmire of a system that was clearly failing Shelley and many others.  I felt helpless.  Not only because of the broken system, but because of my limited knowledge and experience.  Shelley and I exchanged email information and over the next few weeks I sent her whatever limited resources I could find.  I learned that everything she had told me about her past employment was true.  I was ashamed that I had ever doubted her abilities.

This week I attended a luncheon for a large, national mental health organization. As I sat at my table surveying the crowded room, who did I see at the next table but Shelley!  For a fleeting moment I hesitated, wondering if I should or could reach out to her.  Then our eyes connected and we both smiled and greeted each other with hugs.  She looked great – focused, articulate and happy.  She shared with me that the past 6 months had been rough, repeated hospitalizations, homelessness, sleeping in her car.  But she also shared some good news.  During her last hospitalization the doctor diagnosed her with diabetes and since then her health has improved dramatically.   Shelley thanked me profusely for my help.  Help, I asked?  What had I done?  I didn’t have the skills or resources. You listened, Shelley said.  You gave me hope to keep trying, to not give up.

As I sat listening to the speakers at the luncheon, I surveyed the other people at Shelley’s table.  I was particularly aware of one woman who stood out from the group.  Her attire was, well, a bit unusual.  Her royal blue dress hung at an odd angle, the clasp in the back was undone.  She wore black knee high stockings and bright red shoes.  Frequently she stood up to take a carefully aimed cell phone picture of the speaker.   As she headed to the buffet table for the third time (she was painfully thin), a cream colored coat, 4 sizes too big, wrapped around her and belted tightly, I found that old feeling of discomfort creeping up inside of me.

What makes us feel uncomfortable?  Fear?  Lack of knowledge?  Inexperience?  I believe the answer is (d) – all of the above.  By acknowledging our limitations, our lack of experience, we have the opportunity to step outside our comfort zone and to become better at supporting and advocating.

As I drove home I felt a twinge of regret.  I wished that I would have taken the time to learn the story of the woman in the royal blue dress.  What were her struggles?  What brought her to the luncheon?  What were her needs?  I promised myself that the next time my discomfort surfaces, I’ll face it head on and take a big step outside of my comfort zone.

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 10 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci and her husband are parents of three daughters ages 16, 18 and 20.  The oldest and youngest were diagnosed with bipolar disorder at ages 9 and 10 respectively.

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Statistically Speaking

When I am unaware of my symptoms because I’m living within them, my therapist picks up on the subtleties and we tether. It’s her job to pay attention to the rhythms. I have learned to let pride evanesce. This simple action gives me the courage to speak when I am lost in my illness. My clumsiness and flatness become clues for us both. We work together because I am worth it.

The life expectancy of a person with schizophrenia is twelve to fifteen years less than those without.

I am standing in the park. I look to the trees. I have a question that they cannot answer. Nannies walk their strollers, skaters wheel on by, a normal afternoon by all accounts. Frisbees hover, bikinis shimmer, dogs and joggers lope along. A couple beatniks strumming out of tune guitars. But nothing has a shadow. Everything is flat and silent. Find your heartbeat. Breathe.

The primary cause of death among schizophrenics is suicide, attributed to the psychoses and extreme depression that accompany their illness.

I am standing in the park. Or not. It doesn’t matter because it has no meaning, no value, no intrinsic connection. I understand this is breathing because my chest falls and rises, but I can’t feel the air filling my lungs, can’t hear it escape through my mouth. In. Out. Nothing. Breathing is a fallacy. This is how it starts.

Derealization: an intrusive detachment, a subjective experience that the world around you is not real. That moment in a car crash when everything slows down, details intensify, and you feel like you’re on the outside looking in. Imagine that sensation being the only one you know. Time frozen. Distant, unreal. Try telling someone how it feels without having them dismiss you. If it’s not in their index of experience, they judge it as hokum and you as a liar. We all die. But what if you’re dead alive? Caught somewhere in between, a visitor.

Compared with the general population’s rate of 0.01%, an estimated 40% of people living with schizophrenia attempt suicide. Approximately 12% succeed.

Depersonalization: self-awareness disconnected, a jet-lag of the soul. I am outlandishly clumsy, physically inarticulate, careening into walls, falling up when I sit down. I am as pointless to myself as the trees and the joggers and the sunbathers and wheelers. I have lost contact with the Common World and my mind hasn’t caught up to that fact. After so many years of being a platypus it hasn’t occurred to me that I am a wingless, hairy, venom-spitting duck, that I am cobbled together from spare parts salvaged after the Creation. Rubber Ducky, you’re the one. This is how it starts. I lose you, then I can’t find me. We’re colorless now, vague, and set adrift.

The human mind enjoys a puzzle, if only because it’s child’s play. A question is presented and an answer brought to bear. Cause, effect. In, out. Without variety, certainty, or color, the mind searches its data base for a solution. But what to do when left askew? We ask the Oracle. We shake the Magic Eight Ball. Its tiny black triangle reveals the augury, question and answer both one and the same. Those three little words: “It Is Uncertain.” So we turn to the Hive.

With early treatment and care, a good longterm recovery from a first episode of psychosis has a 42% success rate, with an intermediate outcome of 35%. Many people living with schizophrenia experience independent and productive lives through solid community support. It is a matter of working together and understanding one another.

I encourage you to find a therapist. Amazing things can happen once your trust levels are secured. You can help each other follow the trail of breadcrumbs to safety and solution from that place you’ve been ashamed to explore on your own. When I am unaware of my symptoms because I’m living within them, my therapist picks up on the subtleties and we tether. It’s her job to pay attention to the rhythms. I have learned to let pride evanesce. This simple action gives me the courage to speak when I am lost in my illness. My clumsiness and flatness become clues for us both. We work together because I am worth it.

I have a handful of trusted friends on my speed-dial. I’ve learned to be bold when my symptoms flare up. I have instructions for my team to help them help me, to prevent things from worsening. This solution works for me. I build trust, make friends, and practice surrender, no matter how difficult it seems. The park is still flat, the walls are still hard, but I am not as afraid when I’m reminded that I have been here before, that I will find my way back, and that they will be there to welcome me. Be honest even when you think you can’t be. Tell the truth. Your recovery depends upon it. You are worth it.

One last statistic: in 1934, French entomologist Antoine Magnan applied the laws of aerodynamics to insects and concluded that bumblebees, with their chubby bodies and tiny wings, were incapable of flight. Try telling that to the bee.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and humor work hand-in-hand to combat stigma.

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Medication

I'm in a bit of a daze at the moment. I attribute this bewilderment to reading the journal I kept while in a psychiatric hospital. I had forgotten, over the past nine years, how sick I was and it has been quite disconcerting to re-visit it.

I’m in a bit of a daze at the moment. I attribute this bewilderment to reading the journal I kept while in a psychiatric hospital. I had forgotten, over the past nine years, how sick I was and it has been quite disconcerting to re-visit it. After I returned home, one of the medications that had been very effective in the hospital had to be discontinued because of a rare side effect; I had to return to the hospital for a week to get stabilized and started on a new medication. The entire experience, of being in the hospital and then having the medication turn on me, was awful. The only happy notes in my journal are from when I was put, near the end of my stay, in a half-way house. I enjoyed being with a household of people who were just as mentally ill as I was. There was a lot of laughter, compassion and understanding.

Nine years later I have wondered and forgotten, off and on, why I still need to take my medications. Reading this journal put me face to face with why – why I need to continue to take care of myself, why the right medications are so important, why it is that I now have a life absent of horror, confusion and terror.

I am one of the fortunate ones. If I could, I’d get help for every mentally ill person in the world; but that’s not going to happen.

A neighbor of mine recently took in a relative who is most likely mentally ill. He can’t help this young woman. He doesn’t know what’s wrong with her, just that she can’t engage in a two-way conversation, and the other day she mowed his lawn over and over until he had to stop her and take the lawn tractor key away from her. As an observer, I am wondering what is going on with this 25 year old woman. Did the sound of the lawn mower engine help to drown out her auditory hallucinations, for example? I was not invited to meet her, so my observations are only from my own experience and from what I’ve been told. I don’t pretend to be an educated and licensed mental health provider. My knowledge has all been gained from my own experiences with mental illness, mine and my son Calen’s. This is knowledge we gleaned involuntarily. But, I must say, having had the personal experience of mental illness gives me the compassion needed to look beyond bizarre behavior and into the afflicted person. And, by hearing about people who need medication and compassion, I am reminded how important my medications are for me. I am also reminded that Calen and I are so very fortunate to have the care and medications we have.

I live in a tiny town where there are no facilities for mental illness, for intervention and, I was reminded just a few days ago, no time for the mentally ill. (I receive my care and medications in a larger town an hour away.) We do have a medical clinic here and I was told that this young woman went to the clinic because she was obsessing about physical ailments. The doctor who saw her was convinced that she was experiencing psychosis, but he didn’t help her; he didn’t have “time” and dismissed the symptoms he observed with a laugh. This reaction angered me, but there is nothing I can do, especially having heard about it after the fact. There is nowhere that this young woman can go for help unless she is transported an hour away to a mental health facility. She has no money and no insurance. The bottom line though, is that she is not seeking help on her own, but she might have accepted it had it been offered. Today she was put on a bus to return to the city from whence she came. I am not a fan of cities, but I do hope she gets the help she needs (and that she actually makes it back to where she came from).

There are so many people out there who need help. If our government spent even half of what they spend on war to help the mentally ill, we wouldn’t be in this ridiculous position.

Reading my journal was upsetting but I know now, once again, how important it is to take my medications. I’m going to journal again and hope that if I get sick again, I can read back and see what it was that made me better: family, friends, exercise and medications.

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Keeping Hope Alive

I’m aware that trauma can be treated. I see and read about success stories every day and I’m inspired by the triumphs made by complete strangers and close friends. My desire to get better is potent enough to overcome this struggle. Thankfully I have a terrific support system in place and plenty of people who truly care for my wellbeing.

As a kid growing up in the 1970’s, the minute I arrived home from elementary school, I’d throw my heavy book bag on the edge of the staircase banister, stick two rectangular pieces of frozen pizza in the toaster oven and turn the knob to the ON position on the small black and white television that sat atop the kitchen counter.   Depending on what grade I was in, my choice in shows was either a Warner Bros cartoon or General Hospital. It was my daily routine for six years. I’d sit at the white Formica kitchen table and take a large bite of the sizzling pizza, scream as it burned the roof of my mouth, just before starting my homework. Every so often, a loud beep would interrupt my television show and an image would appear on the screen with the words “This is a test. For the next sixty seconds, this station will conduct a test of the Emergency Broadcast System. This is only a test.” Although I’d become accustomed to these emergency alerts, without fail, a spinning red light would appear in my brain for a split second, the fear that maybe this one time, it wasn’t only a test and we were about to be invaded by “the enemy.”  Within a minute, it was all over and I could get back to my beloved Looney Tunes.

Now in real life, I’m reminded of those random, sudden alarms whenever a new and challenging obstacle gets in the way of the progress I’ve achieved in overcoming fears, irrationally catastrophic thoughts and rising above the ubiquitous lure of depression. My journey to the ultimate destination of being able to live a life where peace and joy are possible, despite my chemically imbalanced brain, has taken years of therapy and the right combo of prescribed meds. I sometimes wonder how many times I must pass one of life’s tests in order to prove that I can pass. I’m still here – I’m functioning – even thriving in some areas – yet for the past year and a half I’ve been bombarded by more and more hurdles from every corner of my life, an ongoing race against myself and the universe, to prove that I can take whatever comes my way.

A bit over two weeks ago, all of the compounded stress factors, compiled with strong sensations of anger, sadness, grief and abandonment, brought me to a point, a very low point, where I believed that I had finally failed the test. Despite whatever anyone tells me, I consider myself a failure. Life got the upper hand this time. After almost a decade of learning the tools and methods to combat the emotional triggers and fight the good fight, in my opinion, I flunked out. All of the chaos, the crises and catastrophes that I’ve endured in a relatively short time, have left me traumatized and it’s because of this, I feel I have fallen short. So much of what I’m experiencing is from having major depression and I realize that this illness is contributing to my self-deprecation – and it’s doing more harm than good.

If only I could go back to the carefree days of watching cartoons while munching on pizza – my biggest worry that the Emergency Broadcast System alert wasn’t a test, only a test, that we were being invaded by Martians and needed to seek shelter immediately.

I’m aware that trauma can be treated.  I see and read about success stories every day and I’m inspired by the triumphs made by complete strangers and close friends. My desire to get better is potent enough to overcome this struggle. Thankfully I have a terrific support system in place and plenty of people who truly care for my wellbeing. Writing about my trauma is not something I’d expected to do, as it’s so very painful and private. Yet, I suppose that sharing my strife with others who are or have been in a similar place I’m in right now, would be taking my first step in the healing process. Although I’ve fallen this time, my track record for making a comeback is anything but failure.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Mirror Mirror

Therapy set me on a course of cognition; a recovery program helped solve the drink problem. One evening our group topic was relationships. Most of the men were married or dating. Sobriety had helped them create meaningful connections. I shared about my awkwardness in talking with women, how the wild-pitch verbal aspect of my schizophrenia was tantamount to sneakers clunking away in the dryer.

There was a time when sleeping on the floor in an empty attic, writing songs by day and performing them at night, seemed incredibly romantic. Drinking excessively to control voices and visions was a daily requirement of any artist worth his anorexic weight in royalty checks. Meals were cigarettes and coffee, providing all the necessary nutrients to maintain creative output. Girlfriends came and went, but more often than not, they just went. I have been single, sober, and celibate for seven years this month. The rockstar life is behind me, but that empty garret with a cardboard bed is bafflingly ever-present.

Therapy set me on a course of cognition; a recovery program helped solve the drink problem. One evening our group topic was relationships. Most of the men were married or dating. Sobriety had helped them create meaningful connections. I shared about my awkwardness in talking with women, how the wild-pitch verbal aspect of my schizophrenia was tantamount to sneakers clunking away in the dryer. The men listened. They nodded. And one guy, one of those classically handsome, confident types, quipped: “Face it, dude. Your mental illness is not attractive!”

Dismissive? Undeniably. But he did have a point. Being mentally ill is not appealing. There is nothing sexy or inviting about us when we’re trapped in the crazy. Our symptoms betray us, but we need to remember that we are not defined by our illness. We need to express that. Too often, people fear what they don’t understand – therein lies the challenge for us all. We have a duty to share our experience, so we educate. We have the capacity to be honest, so we advocate. We need to be transparent to reach out from within. To make a connection. And to be truly healthy.

Human touch. Science says we need it, that we were designed for it. Our hands contain almost 100,000 nerves each, in groups of about twenty: a dozen for stimuli, and eight for motor function. Our fingertips alone have more than 3,000 receptors. The tongue, lips, and fingertips are the most touch-sensitive parts of our bodies, yet many still view physical intimacy with Victorian restraint. Unfounded fears and shackled opinions inform social codes of conduct, running counterproductive to what the body was built to do: communicate. A sizable hurdle when you live with a mental illness.

Because of my thought disorder, perceiving and interpreting social cues can be an inscrutability. When it comes to processing social information, benign, even irrelevant signals can be seen as threatening. Paranoia and delusion replace social interaction, and I withdraw. Social adaptation becomes difficult, isolation its panacea. Asociality might hinder my forming a personal bond or impede my need for attachment. Avolition – the “poverty of will” – leaves me wondering “How do I make the connection? What means ‘connection’?” On tenterhooks, I power down, a Wendy-less Pan with an absentee shadow.

Touch reduces the anxiety and tension in our daily lives. We feel connected to others, less apprehensive, more secure. With touch we feel grounded, safe, and bonded to those we love. Cynicism melts away, leaving optimism room to flourish. Our physical, mental, and emotional well-being improves, opening the door to trust. Human beings crave sensory input. It is essential to survival that we touch and be touched.

What then to do about stigma and discrimination in the dating pool? There’s no after school special for tips ‘n’ tricks, no cartoon pamphlet “Guide To Dating For The Modern Schizophrenic”. There is only one way to break the cycle, and it’s up to the individual who lives with the mental illness. A tall order, but where better to begin?

We are born into the same culture of prejudice and misinformation as our prospective dates. We learn to adapt by taking on – and unfortunately believing in – the very stigmas we struggle against. We are raised to fear the mentally ill, and we do…until we realize that we ostracize ourselves. To quote Pogo Possum: “We have met the enemy – and he is us.”

Sometimes I look in the mirror and see the most undesirable creature alive. I view myself as “less than” and loath myself for thinking it. My illness wants to convince me that this self-discrimination is an immutable Truth. Should my illness win, to lose is to die. My voice, therefore, is my lifeline.

I need to polish my heart so that it only reflects that which is presented to it. I need to stare deeper into that reflection until all I see is the man I know myself to be: a healthy person living with a mental illness. Hidden behind my self-stigmatization stands a caring, creative man – a man working toward, and deserving of, love, affection, and respect.

What do you see?

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and humor work hand-in-hand to combat stigma.

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Willingness

Willingness is also relevant to mental illness. I wasn’t willing to medicate away mania but depression was another story. I hate depression and I was always frightened when I felt its heavy hand on my brain, blackening my heart. Unfortunately, I couldn’t do away with the depression without killing the mania

Two women friends of mine have recently come up against the wall of hard knocks; alcohol turned on them in the very physical way that it does.  One friend is in the hospital with liver failure, the other got away with having an alcohol induced seizure. I am grateful all over again, times two, that I’m sober. I remember not really “getting it” until I discovered how very physical the disease of alcoholism can be. I became willing to be sober when I found myself reaching for a gun to commit suicide.

Willingness is also relevant to mental illness. I wasn’t willing to medicate away mania but depression was another story. I hate depression and I was always frightened when I felt its heavy hand on my brain, blackening my heart.

Unfortunately, I couldn’t do away with the depression without killing the mania. I guess scientifically speaking I could have held on to mania but the lives I disrupted when manic made this part of my illness a living hell for those around me. When cognizant, I knew that both sides of the mood disorder needed to be reined in. But it wasn’t until I was willing to take care of myself and my family that I began to be medication compliant.

The same is for alcohol. I live near a college town and when I’m over there I can see, on most nights, young people downing drinks in bars; they have no clue as to how dangerous alcohol can be. If they take the bus home or drive with a sober friend they may believe they’re doing no harm. But they’re setting themselves up to take a huge fall later in life. To be older is to begin to see the physical side of the disease. We don’t usually see young people with cirrhosis of the liver. Cirrhosis is considered a disease that hits after long term drinking. What an incredibly rude awakening it would be to realize that your social drinking, your solo drinking, is going to kill you down the road. The first yellow person I saw was when I was sent on a service call to visit a woman in the hospital. Her liver was screaming, she was jaundiced from alcohol. She came into AA for a few months, lost the yellow but “went out” again. I don’t know if she’s dead or alive. AA doesn’t run after you if you stop going to meetings; it’s understood that you have lost the willingness to take care of yourself, i.e. – to stop drinking alcohol.

I can tell you honestly that if I had not found the willingness to get help for the bipolar disorder that was shredding my life, I would be dead. I’m not being melodramatic: I’m speaking my truth. I was haunted, day and night, by thoughts of suicide; how I would do it, where I would do it, how to make arrangements to make sure no one was around before I did it. Today, because of treatment, I rarely think of suicide. I am no longer plagued by the scenarios running through my head. Back then, when I was drinking and suicidal, I couldn’t see a way out. Now, I don’t need a way out. I’m willing to live clean. I’m willing to be medication compliant. The restrictions on my life are easily dealt with because my horizons have expanded.

I pray you find willingness to do what you need to do, if you need to do it, and I pray that my friend can get a liver transplant because that’s the only way she’ll get better.

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Hellish Shoes

I remember, in the ‘70’s, wearing such high heeled boots that I tipped forward and looked ridiculous. But thinking back on it I don’t think even those heels were anywhere near what women are wearing today. Honestly, I thought women were more empowered and sensible these days. What’s going on?

I remember, in the ‘70’s, wearing such high heeled boots that I tipped forward and looked ridiculous.  But thinking back on it I don’t think even those heels were anywhere near what women are wearing today.  Honestly, I thought women were more empowered and sensible these days.  What’s going on?

I was recently in New York and my eyes popped out watching some women walking along, not even tipped forward, in high heels.  The more stylish they appeared the higher the heels.  Well known women, celebrity women, were all wearing torture shoes.  I can only imagine that every minute of every day we can hear these women taking off those shoes, in private, and exclaiming “OMG, my feet!”   Who is promoting this ‘look’? Where did this ‘look’ come from in the first place?  High, higher and highest heels do make calves look muscular and sexy but why not just go on a good walk or run everyday, or go to the gym and use one of those calf builder machines? Time? Is it really easier to wear highest heels than exercise? Perhaps. But I think the ankle doctor and podiatrist bills might benefit from getting down to earth with your feet.

There was a time when I worked out at a gym for an hour and a half six days a week and my calves were killer even in sneakers and flats.  Perhaps we feel more empowered in heels?  But aren’t we as women at a point where we feel empowered anyway? No?  Are highest heels the equivalent of a man’s tight tie?  Do we kick off our heels once we’re home just as a man would loosen and pull off his tie?  Am I reaching?  Perhaps.

I’m fortunate enough to live in a place where I can wear flats in the summer and hiking boots in the winter.  Even those shoes get shed at the end of the day for barefeet in the summer and fleece slippers in the winter.  But when I travel away from here, into the world, I am always amazed by what I see on women’s feet.  You could say I’m unsophisticated and I won’t take offence.  If sophistication means I have to wear highest heels then I’ll opt for uncivilized.

When I was in New York I asked a young woman why she wore such high heels and she told me she feels more powerful when taller.  I’m not very tall myself but grew up believing in ‘small packages pack more dynamite’.  When I’m arguing I’ve been known to stand on chairs to get above everyone else; and that doesn’t deform my feet, that doesn’t hurt. I did wear a pair of low heels when in NY but ended up getting three horrid blisters on my feet.  I’ll have to stick to flats from now on when I travel.

It pains me that women think they must be complicit with such fashions to be powerful and beautiful.  Perhaps we need to revisit bra-burning from the 60’s when we finally threw our repression into the fire; the symbolism is the same.  How about everyone throwing their high high heels into a huge pile and burning them? We must say to ourselves, men and women alike, that we’re perfect just the way we are, not because of our costumes but because we’re us.

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Where the Moxie Meets the Mojo

There is no cheat-code for advocacy. Winning the fight against stigma and discrimination requires patience, courage, and authenticity. Nothing puts me into Super Effective Booster Mode quicker than a negative stereotype.

There is no cheat-code for advocacy. Winning the fight against stigma and discrimination requires patience, courage, and authenticity. Nothing puts me into Super Effective Booster Mode quicker than a negative stereotype.

In his 1927 short story, The Tissue-Culture King, science-fiction author Julian Huxley’s characters wear “caps made of metal foil” to reduce the harmful telepathic effects of a menacing mental current. Fast-forward to the present day, and we find popular media ridiculing people who live with schizophrenia by depicting them as psychotic paranoids in “tinfoil hats” — a derisive term embedded in our culture, assumed by most to be a justifiable insult. While the dictionary defines it as “a hat made from tinfoil, worn with the belief that such a hat protects the wearer from mind control, surveillance, or similar types of threat,” I just call it bullying. It’s not funny. It’s dismissive and indefensible.

In very early childhood we become aware of physical aspects of identity such as hair color, skin color, and gender differences. Before we are entrained into stigmatizing behaviors and biases, we begin our lives as curious, balanced beings. We organize our concepts of self based on physical characteristics and innocent observation. We define ourselves by our emerging skills.

Preschool crayons give us eight basic colors, and we match our world to that seemingly unlimited rainbow. It takes adult intervention and fear to melt our wax cornucopia into an ill-defined muck. So we try as a culture to reforge those precious and distinct hues back to their original purpose: appreciation of one another, and acceptance of the individual. Until another grownup gets scared. Until the Möbius strip starts unraveling. Until the man on the bus starts talking to himself, or the woman at the market begins sobbing uncontrollably. Then we shield our children’s eyes, turn them away from the nuisance, and color very strictly inside the lines with that undefinable shade of Ugly Thought: Bag Lady. Psycho. Tinfoil Hat.

As an artist I’ve had to make ends meet. I worked in retail until I could no longer pretend that I was blending in, or that my symptoms were going unnoticed. I couldn’t retain the information necessary to sell our goods. I worried that our customers cast no shadows, that our baristas were poisoning my coffee. I knew that my coworkers were stealing my thoughts and relaying them to management. They typed secret messages into the cash registers, clearly intending to get me fired. When I rode the bus home, the other commuters would read my mind. If I chose to walk instead, unmarked trucks with blacked-out windows stalked me through the neighborhoods.

Eventually this terror would pass. Symptoms brought on by anxiety and stress would subside. Yet, in those dark and threatening moments, my private reality was as tangible and as genuine as the commonly accepted variety.

I was alone. I needed strength. I needed a cape and a cowl.

I wore my sunglasses and black wool beanie around the clock. They protected me from harm, allowing me to walk undetected among the demons. One winter’s evening I met with friends for our weekly coffee klatch. I wore my hat and shades inside because the cafe was unfamiliar. Annoyed, a fellow artist chastised me and attempted to tear off my glasses. I recoiled, hands to my temples, obviously frightened. A friend intervened, assuring her, and said: “Henry has his reasons”. While he had no way of understanding what I was going through, he knew it to be important to my survival in the moment. He saw the “crayon” that defined my coping skills, the creative solution that freed me to fill the empty page. I was not a crazy. I was not a freak. I was a man with a mental illness handling a difficult situation with the tools at his disposal. Coloring outside the lines, where the moxie meets the mojo.

Every athlete, healer, laborer, teacher, artisan, scientist, and sage has their own unique superstition and belief, and a corresponding talisman to go with it. Spanning human history and culture, our symbols and artifacts have played a significant role in creating and sustaining our sense of safety and good fortune. From the wishbone of 15th-century Europe to the Native American dreamcatcher, from the gris-gris of Ghana to the takrut of Thailand, our totems and charms have afforded us necessary comfort in times of need, something to believe in when all else failed.

Everybody wears a tinfoil hat, and wherever we hang our hat is home. Because home is where the heart is. And that heart? It’s Super Effective!

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and humor work hand-in-hand to combat stigma.

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A Letter from Glenn Close About the Damages eBay Auction to Benefit BC2M

380 Designer Pieces. 5 Sensational Seasons. 1 Amazing Auction! We’re holding an exciting charitable auction on eBay with proceeds to benefit Bring Change 2 Mind. The bidding will open today, July 10th, and continue for the next 9 days. Final bids will be placed on July 19th.

July 10, 2013

Dear Friends,

I am excited to bring two of my most heartfelt experiences together – a favorite television role and my work at Bring Change 2 Mind. I spent 5 years playing the role of Patty Hewes on Damages.  She was a brilliant, complex and driven woman and I loved every minute with her.  Her wardrobe, masterfully assembled by Damages Costumer Frank Flemming, was very much a part of her character. The 5th and final season of Damages is being released to DVD this week by Sony Home Entertainment.  Sony has generously included our first PSA on every DVD produced! In conjunction with the DVD release, we’ve decided that Patty Hewes’ amazing wardrobe should benefit an important cause – to end the stigma and discrimination of mental illness. We’re holding an exciting charitable auction on eBay with all proceeds to benefit Bring Change 2 Mind. The auction starts today and will remain open for the next nine days. Final bids will be placed on July 19th. Visit eBay and bid on some of the 380 pieces from Patty’s wardrobe. Be sure to tell your friends too! There are beautiful suits, bags, shoes, and signed DVD’s. The auction is now open and will be live for the next nine days. Visit bringchangedamagesauction.com to buy a piece or two from Patty’s lawyer chic wardrobe and help us end stigma. Thank you for being a part of this amazing BC2M community. We’re changing minds and changing lives every day.

Sincerely,

Glenn Close

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Deep Thoughts

Nine out of ten times when I’m given advice on how to cope with life while struggling with an episode of deep depression and anxiety, words that are meant to comfort me and give me hope, are exactly the same as those I’ve been repeating to myself for what seems like forever. The familiar phrases, such as “this too shall pass,” or “you’re stronger than your illness,” are permanently branded on my brain. So it came as a surprise, more like a shock actually, when just a few days ago, someone who knows me very well told me that I think too much.

Nine out of ten times when I’m given advice on how to cope with life while struggling with an episode of deep depression and anxiety, words that are meant to comfort me and give me hope, are exactly the same as those I’ve been repeating to myself for what seems like forever. The familiar phrases, such as “this too shall pass,” or “you’re stronger than your illness,” are permanently branded on my brain. So it came as a surprise, more like a shock actually, when just a few days ago, someone who knows me very well told me that I think too much. My initial reaction was to get defensive – I mean I always thought that thinking was a good thing. It meant I was working on finding resolutions to conflicts, or remembering something traumatic from my past that might have contributed to my current state of feeling down. Deep thinking is and always has been my way of trying to make sense of the senseless. I hate it when there are missing pieces to the puzzle of any situation, it can drive me in circles – so no wonder when I thought about the slight chance that it just might be true that, in fact, I do think too much, it kind of made sense.

I think too much – that’s my problem. Seriously? Yet now that I consider it, I realize that I really do live so much in my head, spending time with my close companions – rumination, speculation and contemplation – and that can’t possibly be a healthy thing. Yet there’s no way I can desert them now, unless, perchance, they really aren’t my friends at all. Come to think of it, they are, in fact, enablers, posing as my pals, allowing me to marinate in a swamp of negative thoughts throughout the day. They’re the ones who keep my addiction to over dosing on pensiveness alive.

Now my attempt for thinking less begins. That’s on par with going on a diet and eliminating all of my favorite foods while being forced to eat stuff that I hate. Giving up ice cream for fat free frozen tofu-something. Blech! But ice cream is my comfort food – even if it’s bad for my LDL cholesterol (and my thighs) it’s what I’m used to and I don’t want to stop eating it.  If only my brain came with an on and off switch, I’d have an easy solution to my dilemma.

How does one quit a life-long behavior such as thinking too much? Is there a 12-step program? Are there Thinkers Anonymous meetings? I’m willing to try whatever I have to in order to live a better life, even if that means adapting new behaviors, albeit I am reluctant to do so.

One realization I’ve stumbled upon along this excavation to mental well being is that some things will remain forever unanswered and other things will simply never make sense. Obviously it’s in my best interest to not think so much and just accept that my thoughts and worries will not change an outcome to any situation. Spending hours trying to figure out why I have depression, or how come I still get social anxiety after all these years isn’t moving me forward – it’s keeping me stuck and many times, just plain sad.

Perhaps if I gradually switch from deluxe super-rich ice cream to a lower fat alternative, instead of making the change all at once, it will be an easier transition. Maybe when I catch myself over-thinking something, I can click on the television or crank up some music, to get my thoughts moving in another direction. I haven’t come across a How to Think Less for Dummies book, so that means I’ll have to come up with my own method. I’m open to suggestions in case any of you would like to share.

Hello. My name is Adrienne and I’m a thinkaholic. No, that doesn’t sound right. Thinking too much is not the same as drinking too much, yet the similarities of continued excess of either one can lead to dangerous places. I think too much. It’s true. It’s not good for me. It’s become an obstacle for sustaining a decent level of mental health and stability. Thankfully, I’ve discovered over time that my actions are something I have control over, and can adjust . . . I think.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Ship Ahoy! Learning to Navigate

I have a list of people that I trust who I can call when I am feeling alone, afraid, or confused. I have learned to be unwaveringly honest about what is happening in my internal world, to speak my truth even when it doesn’t sound “right”. If I need to talk about distortions, fears, and anxieties, I just do.

I wear ten rubber bands on each wrist to keep my hands from disappearing. I keep an even number of napkins in my left coat pocket. I have an empty floss container which I click open and shut as I walk, like those tin frog toys from childhood. It’s a rhythm, a tiny plastic heartbeat in my hand, chirping along as I navigate the uncharted waters of the grocery aisles, lanes that can still seem unfamiliar when the Voices get through and start commenting on my inability to focus on nutrition when I know full well that an anxiety attack in the frozen foods section is not the answer to the question “How much cholesterol is in these toaster waffles?” I simply click away until the answer comes. I make it fun. I write my shopping lists on neon note cards: lime-green for victuals, fuchsia for sundries. The list is my North Star. The sea of breakfast choices will not end in cookies. I am spelunking for food. Food is not a chore. Food is fuel. I am a healthy machine.

It wasn’t always this way. For example: a year ago, at my place of employment, I was experiencing paranoid delusions and hallucinations on the sales floor. It was uncontrollable enough that I had to leave my job. I had to admit to myself what I disliked most about myself: that once again I’d lost the connection which the rest of the world took for granted. That the unspoken, agreed-upon version of reality that got most folks through another twenty-four was something that I had failed to keep track of. Work was the one place I had come to depend on for that sense of normalcy, of being a part of the culture, a worker among workers. And I was. But for that brief moment where the curtain’s drawn back and the magician is just a man. A man with a mental illness responding to his own self- stigmatization.

Yet this particular episode turned out to be a godsend. I learned that day that the Human Resources director was a friend. She had assisted other employees who had had to deal with their own mental illness complications and challenges in the workplace. She was an advocate for us, someone versed in the proper channels, the routes to take to find our way back to work or home, calm and help. I went on family medical leave. I found my center again. I worked daily with my therapist to stabilize myself, ground myself, reacquaint myself with myself. We worked out a plan.

I have a list of people that I trust who I can call when I am feeling alone, afraid, or confused. I have learned to be unwaveringly honest about what is happening in my internal world, to speak my truth even when it doesn’t sound “right”. If I need to talk about distortions, fears, and anxieties, I just do. I’ve asked my friends for permission to speak freely, and they’ve granted it. They want to help. They want to see me be the best that I can be. They have seen me when I’m confused, wobbly, and unstable. They have listened while I freely associated. They’ve understood that it’s symptomatic when I feel I can’t trust them at all. When I’ve gone into isolation, they text or call or come over. They have been there for me all along, even when I had no comprehension of what it meant to have them have my back. Even when my thought disorder tells me they don’t care, they stand by me. They read information online and at the library. They watch interviews, talk to one another, their doctors, my family. They want to help. Because they love me.

I was diagnosed in 2010, but I have lived with this mental illness all my life. What is different is that I have a name for it now, and professional help and information to assist me in managing my life. If a neon note card can assure me that I’ll have a healthy breakfast tomorrow, then a post-it note to call my sister can certainly insure that a voice attached to mine at the genetic level will respond with love and keep me tethered to the world. The phone is my compass. The sea of soul connections will not end in empty calories. I am spelunking for fuel. Love is not a choice. Love is essential. I am an honesty machine. I am surviving because I have learned to ask for help. I am an advocate for myself.

Pleased to meet you. My name is Henry. I live with schizophrenia.

Henry Boy Jenkins is a Seattle artist, writer, and musician living with schizophrenia. He received his diagnosis in 2010 and has been managing his illness with a passion ever since. He is currently writing a memoir chronicling his experiences with schizophrenia and trauma in the hope that people living with a mental illness – as well as those who love and care for them – will find something in his story that compels them to share their own. Publicly open in his advocacy for awareness and change, Henry focuses on education and communication as the most effective tools in any superhero’s utility belt. Honesty and humor work hand-in-hand to combat stigma.

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Throwing Out the Trash

If only I had been diagnosed and treated before everything snowballed into chronic, untreated depression and anxiety. But, times were different then and society didn’t have the resources, the tools, the words, the red flags and the awareness campaigns like we do today. I’m grateful I can live now under the careful watch of mental health professionals.

So often I think about depression and how it’s guided me through most of my life, allowing me to make decisions and choices based on false beliefs that I was worthless and disposable. Depression prevented me from trying harder in school, learning piano, sports try-outs and healthy relationships. I could kick myself now for not studying harder and going for higher grades, all because a little voice in my head told me not to bother, that I would never be smart enough, and there’d be no point in making the effort.  As for piano, I took lessons from a man who came to my house once a week. He was elderly and somewhat patient with my attempts at learning the keys and reading the music. During the week when I would sit on the bench and start to practice, I gave up after making the first mistake. I can’t remember if I ended our sessions or if he did after realizing that I wasn’t making any progress—either way, we gave up on each other and ourselves. I chalked it up to another failure. The piano remained untouched while collecting dust and served as a constant reminder that I was and always would be inadequate.

Night after night I sat on my bed, wrapping my arms around bent legs, wincing and sobbing while analyzing comments from teachers. To my sixth-grade brain, constructive criticism was simply criticism, which meant I was bad. It meant everything about me was bad. When I looked at myself in the mirror all I saw was an ugly face, distorted body and a bad person. By 14 years old, I considered myself damaged goods.

My sensitivity and intolerance to what peers thought of me grew to dangerous heights. If there had been social media in the 1970’s and 80’s, I would’ve had 20 panic attacks a day. One not-so-nice comment could’ve propelled me to self-harm. If only I had been diagnosed and treated before everything snowballed into chronic, untreated depression and anxiety. But, times were different then and society didn’t have the resources, the tools, the words, the red flags and the awareness campaigns like we do today. I’m grateful I can live now under the careful watch of mental health professionals. If they see me sliding in the wrong direction, we work together to make the necessary thought corrections and get me back in the driver’s seat.

It’s become clear that having depression early on made life exponentially difficult as the years passed. As a young teen, I once opted for sleep-away camp.  Friends had been going for several summers and I assumed I’d be accepted and welcomed as part of the group, since I wasn’t really the new girl, or at least I didn’t think I was. For three weeks, my bunkmates dumped the contents of garbage pails on my bed right before lights-out. I had to clean off their used cotton swabs and nose-blown tissues in the dark and then use my germ-ridden blanket – it was the only one I had. They giggled in their beds as I quietly hand picked and disposed each piece of trash using a dim flashlight. Every night I silently cried myself to sleep, waking up to a wet pillow and yearning to go home. I knew that kids could be mean, but not like this. On visiting day, my mom took one look at me and saw the deep sadness and despair. She packed up my stuff and whisked me home.

If only I’d known that it wasn’t ME that was awful, that is was the small buds of depression that continued to blossom as I got older. I struggled against it, stuck in a constant state of self-loathing.

I will be forever grateful that I eventually found help and learned to expel my horrible belief system. Self-hatred and self-doubt no longer have a place in my life. Now, if they come calling, I nod my head, say hello and as I did with the camp girls’ dirty Q-tips, I put them in a trashcan where they belong.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Dying of Kidney Disease by Cinda Johnson

This is unbelievable and yet horrifyingly true. ‘Jenny’ had been fighting her illness for almost half of her young life. Her foe was familiar yet still terrifying with its relentless and changing symptoms that reoccurred despite a long list of medical interventions. She had been through intense treatments with numerous side effects and a lengthy hospitalization when she was 11. Now, at 15, her illness was back with a vengeance.

This is unbelievable and yet horrifyingly true.  ‘Jenny’ had been fighting her illness for almost half of her young life. Her foe was familiar yet still terrifying with its relentless and changing symptoms that reoccurred despite a long list of medical interventions. She had been through intense treatments with numerous side effects and a lengthy hospitalization when she was 11. Now, at 15, her illness was back with a vengeance. The diagnosis (kidney disease) still puzzled the medical team as they debated what to do next.

At the advice of her doctors, Jenny had recently started a daily outpatient treatment, but her illness continued to escalate and was now life threatening. She was tired of hospitals, tests and medications that didn’t work and seemed to only make her sicker. Nothing could ease her pain. Jenny wanted to give up, she wanted an end to this ‘life’ that was void of most of the things that teenage girls ought to be doing and filled with suffering. Jenny had lost hope.

Jenny’s parents took her to go to the emergency room, hoping that the doctors could convince her to be hospitalized, to get the care, the monitoring, the medications she needed to keep her alive.  In the emergency room, Jenny panicked. The nurse brought in a syringe, and Jenny screamed that she wanted to go home. She refused treatment.

As in many states young people can refuse treatment once they turn 14.  Jenny’s parents couldn’t bear to see their beautiful daughter in so much agony, and they couldn’t bear the thought of losing her. Yet Jenny stood firm in her decision. She was so sick, so exhausted and so weakened by her kidney disease that she wasn’t thinking clearly. Yet her parents had no authority to get Jenny the medical care she so desperately needed. She was slipping away right before their very eyes.

One of the nurses pulled Jenny’s parents aside. There was a way, but it would be difficult. Because Jenny was clearly in danger of dying, her mom and dad could call the police who could take over and legally (and physically) force Jenny into treatment. It sounded horrible, but the alternative was worse. Reluctantly they made the call.

The police arrived, and the process began and became increasingly complicated. The hospital was not equipped to treat Jenny’s condition, so she needed to be transported elsewhere. The caseworker worked to find a hospital that could treat Jenny and that had a bed available. Hour after hour went by while Jenny became more and more agitated, her pain increased and the medications she was given had little effect.

Finally a hospital with an open bed was found. As quickly as Jenny’s parents saw a glimmer of light, their hopes were dashed. The ‘hospital’ was 90 miles away and was a part of the state department of corrections. Jenny’s parents begged for a different placement. They knew that there was an open bed at a different hospital but Jenny could not go there. Now that police were involved, the options were limited to the hospitals that contracted with the county. Jenny’s parents no longer had any authority, not over their daughter, not over her care. They could not take back their decision and they could not take Jenny home. They were powerless.

Jenny sobbed and yelled and cursed. She was terrified, the police were frightening her and she didn’t want to be so far away from her parents, from her home and from everything familiar. One of the policemen barked at Jenny, telling her to quiet down, to stop yelling or he would charge her with disorderly conduct and put her in handcuffs. Jenny’s parents were stunned. How could this be happening? All they wanted was to get medical care for their child and suddenly she was a criminal.

The ambulance arrived to transport Jenny to the ‘hospital’. Jenny begged for her mom to ride with her in the ambulance, to comfort her and hold her hand. But the police didn’t agree. Jenny would be accompanied by one of the police officers, the very people who terrified her. The best that Jenny’s parents could do was to follow the ambulance, fighting to see the taillights and the road through their tears.

At the hospital, Jenny was read her rights . . . “You have the right to remain silent, you have the right to an attorney, anything you say may be used against you . . . “.  Jenny’s parents were in shock. How can this be?? She is ill. She needs treatment. She has kidney disease! Her mom said “Can we speak to the doctor? We need to discuss Jenny’s medications, her care, how do we get her out of here????”  Sorry, the doctor had just left for the night with only the nurse on the unit and “in charge”.  The doctor would call in the morning.

Heartbroken and angry, Jenny’s parents drove the hour and a half home. They made phone calls to the hospital that was equipped to provide decent care and were told that Jenny was on a waiting list. Perhaps a bed would open in two days. But there were obstacles. Because Jenny was in police custody, the doctor, the social worker and the county caseworker would all need to agree to the transfer. And then, there would have to be a court hearing. Jenny would need to testify on her own behalf. “In person?” asked Jenny’s dad, “Or from the hospital by phone or in writing?” They were told “It depends.”  If Jenny had to appear in person she would be shackled and transported by the police.

How could this happen in 2013, in the United States, to a critically ill child? It does. This story is entirely true except for one detail. “Jenny” is suffering not from kidney disease, but from a mental illness. Is this scenario acceptable for a child with kidney disease? If not, then why should it EVER be acceptable for that same child with mental illness? My heart is breaking.

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A Letter from Glenn Close About the White House Mental Health Conference on June 3, 2013

Bring Change 2 Mind is answering the President's call to launch a national conversation to increase the understanding and awareness about mental health by participating during the White House Mental Health Conference.

On Monday, June 3rd, President Obama and Vice President Biden will host a White House Mental Health Conference as part of the Administration’s effort to launch a national conversation to increase understanding and awareness about mental health. President Obama will deliver opening remarks and Vice President Biden will deliver closing remarks to conference participants.

While millions of Americans struggle with mental health problems, those who need help are too often afraid to seek it because of the shame and secrecy associated with mental illness. The conference will bring together people from across the country, including representatives from state and local governments, mental health advocates, educators, health care providers, faith leaders, and individuals who have struggled with mental health problems, to discuss how we can all work together to reduce stigma and help the millions of Americans struggling with mental health problems recognize the importance of reaching out for assistance.

Bring Change 2 Mind is answering the President’s call to launch a national conversation to increase the understanding and awareness about mental health by participating during the White House Mental Health Conference. We invite you to participate in the conversation by watching it live at whitehouse.gov/live from approximately 9:30am to 2:45pm EST on June 3.

In addition the Department of Health and Human Services will officially launch a new website, MentalHealth.gov on June 3 to continue the conversation begun at the National Conference on Mental Health. The purpose of the website is to provide mental health information and resources for individuals living with mental health problems, friends and family members, educators, and other community members. Specifically, the website will feature information regarding the basic signs of mental health problems, how to talk about mental health and ways to find help.

Another important purpose of MentalHealth.gov is to keep the conversation about mental health going after June 3 by sharing information about what organizations and individuals across the country are doing to raise awareness about mental health in their communities. BC2M will be an active partner in the continuing conversation about mental health and in particular the stigma and discrimination of mental illness.

We are pleased to be participating in this very important conference and look forward to the dialogue that will begin in earnest as a result of so many dedicated people coming together to advance the conversation.

Sincerely,

Glenn Close
Chairperson

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Letting Go of Fear

In my various conversations with people pertaining to depression and mental health in general, it’s come to my attention that stigma is not the only reason why those who are struggling with their emotions are reluctant to go for help or treatment – the reason is FEAR.

In my various conversations with people pertaining to depression and mental health in general, it’s come to my attention that stigma is not the only reason why those who are struggling with their emotions are reluctant to go for help or treatment – the reason is FEAR. They are afraid of their own emotions – anger, rejection, guilt, sadness – and by not seeking help, they’re able to keep these obstacles to mental wellness hidden and live a perceived easier life in denial. I can understand being scared of my feelings. It took a long time working with my therapist for me to gather the strength and tackle decades worth of suppressed anger. I was terrified that if I acknowledged the rage, it would turn me into a monster and there’d be no turning back.

Fear has kept people in toxic relationships. Being confronted with facing up to the truth is enough reason for so many to stay in troubled marriages, friendships and jobs that are doing serious damage on a mental level and could lead to stress-induced illnesses, all due to the fear of the unknown.

I’ve begged some people to get help for themselves. Many of them don’t want to open up – they’re afraid of crying in front of a “stranger” (i.e. therapist, psychologist, social worker) or even worse than tears, they fear losing control of their actions, and will wind up kicking a desk or knocking over a chair. They are so frightened of facing their emotions, or hearing things about themselves they know to be true but don’t want to accept, that they shun any suggestions of treatment involving divulgence and dialogue.

Although I’m at the point now that I’m not ashamed or scared about publicly discussing my own horrors of mental illness and the unimaginable places it’s taken me, it’s because I was so desperate to get better, that the fear of facing my negative feelings took the back burner to saving myself.

This is what frustrates me when I see people I care about in crisis and I know they can recover if they’re willing to “go there.”  I often use myself as an example “take it from someone who has been in your shoes” yet my pleading, often times, falls on deaf ears.

Holding a virtual mirror up to your face and seeing what’s inside can be daunting. Of course I was, and still am afraid of what might surface during a therapy session. However, when I weigh the options of staying quiet, keeping the gunk buried deep, as I did for most of my life, or confronting my demons and learning to let go – the choice is clear.

Our time on this planet is limited. As they say in business, no risk, no reward – and I’d have to say the same holds for mental health. Imagine spending your entire life avoiding something that can help you and heal you, simply because you fear opening a can of worms.

The darkness of depression, be it chronic or episodic, is so powerful and easy to succumb to that it forces you to make tough choices about what direction to take in your life. Do you give in and not seek help out of fear of being stigmatized or fear of what you might find once you walk through the door? If you let the trepidation of feeling your feelings hold you back from living a better quality of life, you’re doing yourself and your loved ones a disservice.

Every wall has a crack, every person has a flaw, and every human has feelings. It’s natural and it’s what makes us who we are. When those feelings turn negative and ugly and take over, overwhelming us, keeping us from experiencing joy, peace, laughter – it doesn’t have to be forever. There are no limits to the amount of talking and sharing about our struggles, worries and ups and downs. However if we fear what’s inside ourselves, going through life avoiding and/or denying the essence of who we are because we’re afraid of being afraid, it will only continue to fuel the fire of stigma we are desperately fighting every day.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Making the “Ask” Together by Cinda Johnson

We all need a team of friends and family. In addition to raising money for NAMI and BC2M we walked with a team who “get it”. We walked with new friends and old who have been to the edge of hell with mental illnesses. Some have experienced great success, stability and recovery and some are living with unbearable heartbreak.

I really, really do not like fund raising. I feel insecure and unsteady. I am not sure what to say or how to ask for donations even for a cause that I support whole-heartedly. It brings forth middle- school insecurities, feelings of appearing too needy and it makes me feel awkward. But as I work on fund-raising for our NAMI-BC2M walk team I realize that it is a very similar feeling to those I experienced when first venturing into the world of mental illness. While struggling to find my daughter care I felt extremely exposed and that my world could easily fall apart with just a little rejection.

I can only imagine how difficult it can be for someone living with a mental illness. Reaching out to others with a request for support can leave a person feeling very vulnerable. What if that person says, “No”? What if he or she wonders why I couldn’t provide the resources myself and why did I need to ask others? The very act of asking others for support is difficult for many of us and, I believe, particularly so when we are in our most fragile state.

Mental illness preys upon confidence and security, not only of the person living with a mental illness but their families as well. It leaves one feeling alone and uncertain of the future as well as the immediate present. What can help this journey through the initial symptoms and tentative and eventually more assured diagnosis to stability and recovery? I believe that a crucial component is confidence that there is a team who cares and will not turn away but will listen and then listen even harder; a team that will offer support, and stay the course with steadiness, resolve, hope and belief in better days.

Those who donated to our walk believe that their donations make a difference. They listened to my request for support and they did what they could. I had a goal of 100 team members, each raising $100.00 from ten people – each giving $10.00. You see how easy it would be to raise $10,000.00 with each person offering a little? We have 57 people on the team and together we have raised close to $9,000.00! My personal goal was $1,000.00 and at this moment I am within $45.00 of that goal! Each “ask” felt uncomfortable but I did it anyway. I did it for the many, many people who live with mental illness and who live alone with their fear, their lack of resources and their uncertainty of their future. I did it because my family had a team walking with us when my daughter Linea was first hospitalized for suicide ideation. They were with us when she pushed back at her diagnosis of bipolar disorder with often unhealthy acts. They were there during the many, many days and nights when we thought we had lost her. They were with us through more hospitalizations and the very frightening but ultimately positive electroconvulsive therapy. They have been by our side when we shared our story to the nation a year ago this May, creating opportunity for criticism, second-guessing and much vulnerability. They have joined us in celebration as we connected with people all over the country who relate to our story and who told us they did not feel as alone as they did before reading our book. They cheered as Linea found her voice and this team of friends and family continue to support her as she works with national leaders fighting stigma, sharing resources and providing hope.

We all need a team of friends and family. In addition to raising money for NAMI and BC2M we walked with a team who “get it”. We walked with new friends and old who have been to the edge of hell with mental illnesses. Some have experienced great success, stability and recovery and some are living with unbearable heartbreak. Many on our team “came out” for the first time by participating in our walk.  Together we support each other and we make the “ask”, if not for ourselves, for each other.

Cinda Johnson, Ph.D., is a professor and program director at Seattle University. She teaches graduate students in special education, school psychology, school counseling and community mental health. She and her daughter Linea are the authors of Perfect Chaos: A Daughter’s Journey with Bipolar, A Mother’s Struggle to Save Her (St. Martin’s Press, May 2012).

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Why We Walk

This past weekend our BC2M team took part in the Milwaukee NAMI walk for the 4 year in a row. It’s been a great experience, I love the Milwaukee NAMI staff members and the other walk teams; we’ve developed some great friendships and connections over the years. I’d like to share how these experiences have influenced my perspectives and strengthened my commitment to NAMI, BC2M and to supporting my family and all families affected by mental illness.
                                                                                                                                   

This past weekend our BC2M team took part in the Milwaukee NAMI walk for the 4th year in a row.  It’s been a great experience, I love the Milwaukee NAMI staff members and the other walk teams; we’ve developed some great friendships and connections over the years. I’d like to share how these experiences have influenced my perspectives and strengthened my commitment to NAMI, BC2M and to supporting my family and all families affected by mental illness.

Let me start with a little about our walk history. My co-captain, Chrisa, is a powerhouse for fundraising, as well as everything she does, particularly fighting for her son Tim’s care. You may have seen her posts on Facebook or read her blog “The Mindstorm” http://chrisahickey.blogspot.com/ about her family’s journey with mental illness. Chrisa and I love a good competition, and our NAMI has not been disappointed. Every year they have put out prizes for the top fundraising teams, individuals, as well as drawings and all sorts of surprises. Year one was a meet and greet and lunch with Greg Jennings of the Green Bay Packers. Tim (15 at the time) is a HUGE Packer fan, so there was no question, we HAD to win (and we did).

Year two was another Packer opportunity, this time with Ryan Grant, but we were up against a very powerful team, ‘Remembering Eric Kloth’. You can learn about Eric’s story, his bright future and the illness that eventually claimed his life in May, 2010 in this eloquent article:  http://www.jsonline.com/news/milwaukee/104221114.html. In the final hours before the walk, ‘Remembering Eric Kloth’ crept into the lead. I said to Chrisa, “They lost their son, we still have our children. They deserve to win.” Chrisa agreed, but added “and we’re fighting to keep our kids alive”. After the winner was announced (we came in 2nd) ) Eric’s mom invited Tim and his dad to attend the meet and greet luncheon with them, so that Tim could be a part of the Packer experience.

Years three and four have seen the Kloth team hold on to 1st place by a considerable margin. We all celebrate and applaud their accomplishment because it keeps Eric’s memory alive while making a huge difference for others. The support they provide to NAMI goes right back out into the community, right back out there to making a difference for every person out there who isn’t able to participate in the walk, who isn’t able to rally together a team of supporters, who may not even know that NAMI exists.

This year, our normally robust and enthusiastic team consisted of just 3 people: me, Tim and Tom (Tim’s Dad). And of course, our faithful dog, Domino, complete with his Bring Change 2 Mind bandana. It wasn’t for lack of support or caring, life just got in the way and so many of our team members were pulled away by other demands – jobs, high school prom, rehearsals, and yes, of course, mental illness. It didn’t matter. We were among a huge family of 87 other teams and nearly 1000 other walkers, all walking for the same reason. To stomp out stigma and to raise funds to help others. We proudly walked with our banner, our t-shirts and our message. And I was thankful that as bad as things may get, we were not wearing lanyards with a photo of one of our children. We were not walking in memory of; we were walking in honor and support of, Tim, my daughters, relatives and friends.

Bottom line, there are no winners and losers in mental illness. We’re all in this together. When any of our kids hurt, we all hurt. Whenever we can do something to help, we do so because these are all our children, no matter if they are age 4 or 40.

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 10 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci and her husband are parents of three daughters ages 16, 18 and 20.  The oldest and youngest were diagnosed with bipolar disorder at ages 9 and 10 respectively.

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May Brings Change to Many, Many Minds

May 2013

High Time We Made a Stand

In case you haven’t heard, May is Mental Health Awareness Month. While I’m a believer that we should be doing something all year long to raise awareness of mental health, illness, and treatment options, now is a great opportunity to use this month-long occasion to start a dialogue of your own. Even the briefest conversation can make a difference in someone’s perception of what mental health is all about.

In case you haven’t heard, May is Mental Health Awareness Month. While I’m a believer that we should be doing something all year long to raise awareness of mental health, illness, and treatment options, now is a great opportunity to use this month-long occasion to start a dialogue of your own. Even the briefest conversation can make a difference in someone’s perception of what mental health is all about.

I clearly remember the days when I did all I could to keep my depression and anxiety a secret. It was exhausting and only added to the heaviness to my painful symptoms instead of alleviating the stress of appearing to be “normal.” Normal, in my case, was lying about going to my primary care physician for a sore throat, when, in reality, I was going to my psychiatrist for a medication management session. Normal was taking an anti-anxiety pill before getting on a flight while telling my travel companion that it was a decongestant. Sadly, normal also meant trying to come up with a valid reason for my public crying outbursts, when inside, I didn’t know where on earth these spells were coming from.

We, as a society, have come a long way, in terms of eradicating the stigma surrounding mental illness – but we still have a very long way to go before it becomes an acceptable topic, just like a physical illness with visible symptoms is discussed openly and without prejudice. I speak from personal experience, as several times in my past whenever I even broached the subject of my depression and anxiety, I was told by others that it was all in my head and I should be thankful for what I have, (“because millions of people all over the world were suffering with real-life matters like starvation and homelessness).

Exactly one decade ago, I took a six-week leave of absence from my job. I had planned on resigning because the stress of constant traveling and absurd corporate pressure caught up with me. During my meeting with the head of Human Resources, I learned that since I had been at the company for several years, I didn’t need to resign, that with authentic documentation from my doctor I could take a paid leave for medical reasons – physical OR mental. This didn’t sit well with any of the higher-ups who counted on me to bring in revenue. They couldn’t SEE that I was falling to pieces on the inside and accused me of taking a vacation. Upon my return, a friend confided in me that while on leave, one of my colleagues, someone I mistakenly thought would have compassion for my situation, had berated me in front of my fellow co-workers, some of whom were not aware of why I was out of the office for so long. Shaking off the shame and hurt, I wondered that if I had taken the same six weeks off for maternity leave if I would have received the same type of reactions. I knew the answer.

It’s extremely liberating to be writing about mental illness, no longer having to make up excuses for who and what I am.  Anyone who doesn’t want to be part of my life because I have an invisible illness which scares them, well, that’s their loss, not mine. There’s always going to be someone who thinks psychiatry is a made-up illness by the drug companies; or that depression is simply self-pity for those who seek attention and anxiety is a fear that’s easily overcome “if I just stopped worrying so much.”

We are the ones who are going to change the face of mental illness by talking about it. It takes courage, and not everyone is ready to speak up, and that’s understandable, it takes time and support from others.

What I’ve done is surround myself with people who bring out the best in me. We all have them, they are anyone who can make you smile and feel good inside. You never know when and where you will meet these people, so the key is to live your life and you’ll accumulate your own list of those with whom you connect – and they’re usually from places you’d least expect.

So, let May be the month you begin to talk, talk and talk some more, about mental health. It will get easier over time and I promise that you will be pleasantly surprised when you find out how many others are sailing in the same boat.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Appearances Can Be Deceiving

One of the contributing factors to the stigma of mental illness is that it’s often not readily visible. Whether we’ll admit it or not, we are a society that likes to see it to believe it. When was the last time you heard “but she doesn’t LOOK sick”? Or the converse “she looks SO depressed”.

One of the contributing factors to the stigma of mental illness is that it’s often not readily visible. Whether we’ll admit it or not, we are a society that likes to see it to believe it. When was the last time you heard “but she doesn’t LOOK sick”? Or the converse “she looks SO depressed”. And that’s not just for mental illness – how often have we weighed in on whether a co-worker was really ill enough to call in sick, or shouldn’t have come to work because they were too sick. Just the other day a friend commented that someone ‘doesn’t look like she has cancer’. Really???!!! Why is that we become self-appointed diagnosticians at the drop of a hat? Who does that serve? Not the person who may or may not be ill; it serves our egos. We like to be in charge, we like to know more than then next person, we like to be ‘on top of our game’. Ugh. And regrettably, I’m as guilty as the next person.

As my daughter’s illness digs in its heels and settles in for the long haul, I find myself increasingly steered by my worry about what others will think. I don’t WANT to be that way, but I am. Not because I care what they might think about me, but I am fiercely protective of what inaccuracies they might think about my daughter.

I know that when things get really bad, it’s even more important to keep some sort of routine, provide activities that will motivate my child to interact with others, find ways to keep her from isolating. But the outside world sees it differently. They see someone who rarely shows up for school, and then goes to her best friend’s birthday party. They think ‘oh how nice, she does what she wants and skips the rest’. What they don’t see is how day after day my daughter struggles just to get out of bed; she doesn’t care what she eats or IF she eats. They don’t see her still awake at 2 am because she feels so edgy and agitated and irritable that she’d like to crawl out of her own skin. They don’t hear her cry for hours because it all feels so hopeless. And they don’t see the fall out after the ‘fun’ activity where my daughter crashes from emotional exhaustion from trying to hold it together while putting on a happy façade. They don’t know that she dragged herself to the party because she didn’t want to let her best friend down.

Few of us want to appear as less than our best (or near best), even though we know at some level that we all are, well . . . human. We have less than perfect moments and less than perfect days. Yet we still seem to believe that others are stronger, prettier, more together, more popular and more successful. To make matters worse, the more superficial the relationship, the more we seem to want to keep up that shiny exterior.  How unrealistic we are, how unfair we are, to think that we must hide our pain, hide our imperfections, hide our true selves.

I have two wishes for my daughter. One is for hope. Hope that it WILL get better. Hope that soon the good feelings will come back and outweigh the bad ones. Hope that lost time can be regained, that lost goals can be attained. The other wish is for acceptance. Acceptance at face value with no excuses necessary. Acceptance from others and acceptance from within. I don’t think this is too much to wish for.

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 10 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci and her husband are parents of three daughters ages 16, 18 and 20.  The oldest and youngest were diagnosed with bipolar disorder at ages 9 and 10 respectively.

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Traveling

We were in NYC to shoot a new PSA for BringChange2Mind. I’m excited to see the PSA. I’m excited for all of you to see it too! And I will be forever grateful for the huge crew who showed up to help us get the message out that stigma is NOT okay.

I’m gearing up for a trip to NYC.  It’s been raining and raining.  I’ve been so stressed out that I actually (this is gross) dug some cigarette butts out of a planter in my yard and put them in the toaster oven until they were crisp and dry.  How sick is that?  Funny though; at least I think so!  I haven’t smoked regularly for quite a while but the other night I attended a party with many old friends, some of whom still smoke.  So, what did I do?  I bummed two cigarettes.  What did I do when I got on the road to home?  I stopped at a convenience store and bought a pack!  A friend of mine came out to my house the next day and he, being an ex-smoker, and I, the same, ripped through that pack while discussing politics, the economy, people and the issues we face.  I just love discussion driven by nicotine!  There’s an extra plateau that’s attained while talking and sucking on a cigarette; inhaling before making a point, exhaling with conviction.

Now, my eldest son, Calen and my first daughter-in-law, Megan, and I, are traveling.  We’re in the Chicago airport, waiting for our flight to NYC.  Snitz just drank a lot of water and I forgot peepee pads for her.  Help!  I’ll have to put paper towels down for her but she probably won’t use them…

I’m back home now!  Snitz didn’t use the paper towels but she held it for the whole trip, which is typical of her.

We had a whirlwind trip – 4 days, 3 nights.  We were in NYC to shoot a new PSA for BringChange2Mind.  Most of the crew, and there were many, were from Damages, the show Glenn starred in for five years.  They were family to her and just seeing them greet each other was heart warming.  They were all working for reduced wages, some were strictly volunteers, and they worked their buns off!  I was so gratified to be able to work with all of them.  Before shooting, and after, Glenn gathered everyone around and said that this work, this PSA, is dedicated to Jimmy P, a beloved crew member who took his own life.  There were tears and hugs all around.  If Jimmy P knew how much he would be missed I wonder if he would have taken his own life.  Unfortunately, without intervention, he probably would have.  If he was able to talk about his depression, if the stigma wasn’t there, I would hope he’d still be with us.

My eldest son, Calen Pick, was the one who carried the most weight for this new PSA.  He had lines that I know I would never remember.  Glenn had lines too.  Meg and I sat at a table nibbling on muffins and croissant.  And Snitz, of course, was with me.  I was so incredibly proud of Calen!  He’s had a rough road and seeing him up there, in front of the intimidating camera, brought tears to my eyes.  He’s the real thing, he’s not an actor pretending to be someone with mental illness.  And Glenn’s words were the real thing too.  So, I’m excited to see the PSA.  I’m excited for all of you to see it too!  And I will be forever grateful for the huge crew who showed up to help us get the message out that stigma is NOT okay.  Liz Garbus from Moxiefirecracker Films directed the piece and worked with Calen as they took take after take after take.  Calen understood the necessity of many takes and his experience with working as a teenage actor, right before mental illness struck him down, held him in good stead.

We had an uneventful trip home to Montana.  Snitz was one lucky girl because she had her own seat on all four flights!  No, I didn’t pay for her seat, it was just how it turned out.

So now, home again, I’m watching rain on the window in front of my desk.  My friend, Mike, is building me a new roof and found that there were three roofs put down over the years when he was doing the tear-off.  This little house was built in 1901.  He’s finding rot and all sorts of things in this old roof.  I’ve been told that I should just tear down this house and build a new one but I don’t think so.  I like that it was built in 1901, I like that it used to be a schoolhouse for the local ranch children.  I like that I can come home to a little bit of history.

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Walking Together by Cinda Johnson

There is hope and there is recovery in this journey with mental illness. There is strength in numbers and friends are made when people face adversity together. Join your local NAMI-BC2M Walk and find your team. It might be a sunny day but there are no guarantees. If not we will finish our walk anyway and we will finish it together.

I signed up for this walk and I guess I have to participate. It is October and raining…hard. It is dark and grey and miserable along the shores of Lake Washington. Across the lake the Seattle skyline is hidden behind dreary, low clouds that threaten continuous rain. My last NAMI-BC2M walk was far across the country on the east coast. On that walk I joined NAMI Walks NYC, beginning at the Seaport in Brooklyn and from there we walked across the Brooklyn Bridge. It was a sunny and beautiful day with great conversation and high spirits. The previous NAMI walk in Seattle was also a beautiful spring day and we proudly carried the Bring Change 2 Mind banner.
Miserable is the best word I can think of to describe this particular day. It is not “misting” as it can often do in Seattle; it is pouring. The wind is blowing and the rain is sideways. It is cold. I wonder how many people will actually turn out for this 5K slog along the wet and windy shoreline of the lake and walk to Carillon Point. In good weather this is a beautiful walk. Today it is bitter and soggy.
My daughter Linea, my husband Curt and I make our way past the multitudes of umbrellas to join our team under the Marina Park Pavilion, dragging the Bring Change 2 Mind banner with us. We put down our umbrellas and shake off some of the water collecting on our pant legs and stomp off the water filling our shoes. We meet old and new friends on our team and slowly make our way back into the downpour to listen to the short welcome speech and we begin the walk. It continues to be wretched weather but soon we are laughing about how miserable it is and if we should go the entire way or quit at the halfway point. The banner is difficult to hold upright in the wind and it perfectly angles the rain down our necks. My friend Victoria points out that this is kind of an analogy for living with mental illness. She is so right.
If I were walking alone I would have given up a short distance into the 5 kilometers. It was too wet for me, even as a person who has good rain gear. I would have waited for the rain to let up or walked another day. But together we are a team that urges each other forward. We listen to stories and understand more about why people are walking on this day, in this rain. I talk with a friend who I hadn’t seen since the last walk and we share new resources that we had each found over the last year. Another walker updates me on the health of a family member who is the inspiration for her walking in this downpour. I meet the family of a new and dear friend who recently lost her son to his mental illness. Her family walked with his smiling face on their personalized photo buttons. His little niece and nephew slog along with us, all 5 kilometers and through puddles much larger than they could jump across, yet they never complain. The youngest is soon carried by his dad and his dad never complains. There is much laughter and soon we are at the finish line. Together we have made it.
People living with mental illness need a team. The family needs a team as well. Living with mental illness is not always a sunny walk in the park. It can be miserable, cold and feel like it is a never-ending struggle. There were many, many times during Linea’s initial diagnosis with bipolar disorder that I felt I couldn’t go another step. The difficult search to find treatment while her illness was working to take over her body was exhausting and overwhelming. I was disheartened, terrified, and uncertain. I felt very alone. We slowly found our team and we shared our story. Together we moved forward with the support, strength and good humor of family, friends, care-givers and medical providers. There is hope and there is recovery in this journey with mental illness. There is strength in numbers and friends are made when people face adversity together. Join your local NAMI-BC2M Walk and find your team. It might be a sunny day but there are no guarantees. If not we will finish our walk anyway and we will finish it together.

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Proactive or Protective?

Why is it that in the 21st century, despite some very important and (reasonably) successful battles for equality, we still have painful inequalities and double standards? You’d think by now we’d be past this, but when it comes to illnesses, there is a huge chasm that needs to be closed.

Why is it that in the 21st century, despite some very important and (reasonably) successful battles for equality, we still have painful inequalities and double standards? You’d think by now we’d be past this, but when it comes to illnesses, there is a huge chasm that needs to be closed. Having spent the past week combing one store after another with daughter #2 searching for a prom dress, I keep thinking of an analogy to fashion merchandising. Some illnesses, like the latest designer creations, earn a coveted spot in the window display or on the cover of Vogue. The diseases get lots of funding for research and patient support. Others (i.e. mental illnesses), like last year’s fashions, are shoved to the back of the store on the clearance rack where few people venture, and fewer want to take the time to search through the jumbled mess of odds and ends.

This double standard hit home for us last week, right smack in the midst of some exciting opportunities for daughter #1. She had recently submitted a video for an anti-stigma contest held by our state NAMI affiliate and was selected as one of 11 finalists. This announcement came just as she was in the midst of a series of interviews for a really great job opportunity. My pride and excitement were clouded by my fear that somehow her video entry might impede her chances of being hired. What if the perspective employer did a Google search (most do) and learned about her illness through the contest? I kicked myself for encouraging my daughter to submit the video, and creating this unnecessary and unfair risk.

Thankfully, she got the job. But as her mom, I still worry. I’ve supported and encouraged my daughters to be advocates, to talk about their illnesses, to not feel or show shame. And yet, each time an opportunity comes up, I hold my breath in fear that their honesty and openness will backfire. It shouldn’t be that way, but sometimes it is. And not just for mental illness, there are other disorders that carry stigma – Crohn’s disease, alcoholism and other addictions to name a few.

This is why I believe in and support Bring Change 2 Mind’s mission. At the risk of sounding like an infomercial, I encourage you to support Bring Change 2 Mind in the fight to eliminate stigma. Make a donation (any amount helps), join in one of the NAMI/BC2M walks or sponsor a team or a walker, support BC2M’s project of producing another PSA. It isn’t about HOW you show support, it’s just a matter of SUPPORTING. We must be the vehicle of change.

If you would like learn more about the NAMI Wisconsin video contest and view the 11 videos (all made by high school and college students, click here: http://www.youtube.com/user/namiwisconsin/videos. To vote for any one of the videos (my daughter’s video is titled “Mania: Do You Know What it’s Like”) click here: http://tolu.na/16I4mhy.

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 10 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci and her husband are parents of three daughters ages 16, 18 and 20.  The oldest and youngest were diagnosed with bipolar disorder at ages 9 and 10 respectively.

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Save It for Therapy

Since I began speaking openly about depression and anxiety, one of the greatest rewards has been the feedback from friends—and strangers—who’ve thanked me for helping them know they’re not alone with their struggles. When I hear that I’ve given them the words, vocabulary and confidence to talk about their own personal struggles, even those they’ve never shared before, I feel a sense of purpose I never knew existed.

Since I began speaking openly about depression and anxiety, one of the greatest rewards has been the feedback from friends—and strangers—who’ve thanked me for helping them know they’re not alone with their struggles.  When I hear that I’ve given them the words, vocabulary and confidence to talk about their own personal struggles, even those they’ve never shared before, I feel a sense of purpose I never knew existed.

Whenever I make a new connection, whether in-person or online, and feel their unbridled gratitude, it motivates me to keep going, to push forward in the fight against stigma and to keep people talking about mental illness.  Over time, I’ve become more open about specific issues that I have trouble with.  Self-esteem, thinking errors and social anxiety are three of many obstacles that I’ve faced head-on.  Apparently these are common difficulties that many of us are forced to fight.

While I truly love talking and corresponding with my compatriots, every once in a while, a topic will surface and I’ll have no idea how to respond.  The best I can do is listen and acknowledge the conflict my friend is facing and offer emotional support – then I have to say the words that I believe to be the best solution to their problems – “save it for therapy” – or for those who’ve heard it from me before – “SIFT it”.

I coined the phrase SIFT when I realized that a) I’m not formally educated in mental health b) some situations are so above my “pay-scale” that I’m at a loss for words and c) I’d hate to give the wrong advice to someone who is in desperate need for professional help, i.e. therapy!

When I tell my friends to SIFT it, a wave of guilt rushes through me, because I want so badly to help them and relieve them of their pain. Here they are in distress, coming to me for help or advice, and I’m unable to wave a wand and have their troubles disappear. Then rationalization kicks in, and I realize that if the same person came to me with a physical problem that I knew nothing about, I’d tell them to call their medical doctor, and just like that, any trace of guilt I had vanishes in a snap. For instance, if a friend called and asked for advice about chronic toenail fungus, I’d be at a loss for words except for the suggestion to call a dermatologist.

What’s most important is the authentic tête-à-tête of honest and often painful exchange of thoughts and feelings. As anyone who has had these kinds of deep conversations can attest, they alone can serve as a form of therapy. I know I always feel better after talking to a friend who’s just there to listen to my stuff. I don’t always hang up the phone with a to-do list, yet the emotional weight I’d been carrying is not as heavy as it was before. I think it’s pretty cool that now I’ve got confidants on the other end of the line telling me to SIFT it, and they’re right.  There are some situations that call for professional guidance and solutions, and I know when SIFTing is my only option for getting through the exceptionally rough times. Still, I enjoy gabbing with my friends just to get their feedback and hopefully some giggles about life’s absurdities that stem from the topic of discussion.

There are no plans in my future for getting a degree in mental health.  I like how things are now. With every exchange, I become a better listener and learn new insights and coping skills. The main thing is to keep the conversation going, and if/when I tell you to go SIFT it, take it as a compliment – it means I want you to get better, ASAP.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Caring for the Caregiver

In reality, acknowledging my humanity, reaching out, admitting to my ‘dark side’ helps not only me, but it helps others. For if I reach out, I’m giving others permission to do the same. And I’m giving my friends an opportunity to be helpful. I know that one of the best things I can do to feel better is to help others, share my experiences, and offer hope.

My mom is an eternal optimist. She’s 86 years old and I don’t think I’ve ever heard her complain. For every challenge I’ve faced, every time I’ve vented or cried, she’s come back with a hopeful, encouraging, supportive comment.’ Now don’t get me wrong, I would MUCH rather have her unshakeable optimism than a doom and gloom, ‘the sky is falling’, ‘don’t bother me with your problems, I’ve got enough of my own’ set of responses. But sometimes (and I’m not proud to admit this) I just want to scream ‘No Mom, this just SUCKS!!!’ What it really comes down to is that at that moment, I just want to feel heard. I want my personal pain acknowledged, not fixed or swept away with a broom of sunshine and butterflies.

Why do I share this? Because as my daughter’s latest bout of depression has dragged on from days to weeks, creeping up on months, I find myself needing some reminders on how I, as a caregiver, can stay healthy, resilient and strong. Here’s what helps me:

1. My experience with my mom underscores what may seem obvious, but is often overlooked. I need to acknowledge my pain. Sometimes I’m afraid to do that, because I fear that I’ll get stuck in the pain, or I will become one of those doom and gloom types, that my optimism and resiliency will be swallowed by some emotional sinkhole. And I’m also afraid that acknowledging the profound impact of mood disorders will somehow give the illness more power, overwhelming power. But the reality is if I DON’T acknowledge my pain and my fears, I surely WILL get stuck and the illness WILL become a sinkhole. The more I ignore the impact of mental illness, the more I just try to keep chugging along, the more I start spinning my wheels, getting stuck deeper and deeper in the mud of my denial. And, aside from not being healthy for me, I’m modeling some really ineffective coping skills for my daughter (and my entire family).

The way I find acknowledgement for my pain is to get the ‘this SUCKS’ out in the open. I did that this week, literally. I texted a friend who is in this not so exclusive little club of ours (you know, the one we all belong to because of our common tie to mental illness) and wrote simply “Mental illness sucks”. My friend responded “It beyond sucks”. I had to laugh. Coming from a well-educated, widely published, articulate and poised professional, my friend’s response was so out of character that it was just what I needed. Two sentences, three words each. That little discourse made me feel understood, validated, and gave me permission to acknowledge and share my frustration and pain. And allowed me to move on.

2. I need to use my network and resources wisely. I have a responsibility to manage my expectations and match my needs with the person who is best able to support that need. In defense of my mom, I haven’t always done this well. I’ve expected her to fill a need that isn’t her niche, or I haven’t clued her in to my expectations. Talk about a recipe for disappointment for both of us!

I am very fortunate that my network includes a variety of friends and family who can fill these different niches. Some, like my texting buddy, are a part of the ‘club’. Often, they know instinctively what to say or not say, do or not do, and can read my moods and emotions with uncanny radar. Others are ‘normies’, they don’t live in this world of ours, and that’s good. Because sometimes I need to talk about anything BUT mental illness, even if just for a few minutes.

3.  Taking care of me means building in breaks, distractions, humor, exercise and a few good cries in the shower. I need to practice good self-care – get enough sleep, nurture my spirituality, eat well, avoid sad movies, books, TV shows.

When times are tough, I have to remember to use my network and to use it properly. Sure, part of me would like to just isolate, crawl under the covers with Netflix and a bag of M & M’s and surface again when my daughter is well, but another part of me knows that if I act on these feelings, I’ll hate myself before the first episode of ‘Grey’s Anatomy’ has started. I’m not a quitter, I’m not a runner, and I’m not an avoider. But I am human; I forget; I become stubborn; I think I can do it all alone.

In reality, acknowledging my humanity, reaching out, admitting to my ‘dark side’ helps not only me, but it helps others. For if I reach out, I’m giving others permission to do the same. And I’m giving my friends an opportunity to be helpful. I know that one of the best things I can do to feel better is to help others, share my experiences, and offer hope. So why would I deprive others of the opportunity?

Mom, if you’re reading this, please don’t change a thing. I love you, I admire you and I need the predictable optimism that you offer. You are a very important part of my network and I’m so grateful for every single person who plays a unique and valuable role in helping me through these tough times.

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 10 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci and her husband are parents of three daughters ages 16, 18 and 20.  The oldest and youngest were diagnosed with bipolar disorder at ages 9 and 10 respectively.

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Relatives

As a family, we have hashed out many things around this table where I’m sitting, one of the more dramatic being that I had to be admitted into a hospital for my bipolar disorder. This table also heard the conversation surrounding my son, Calen, and when he had to go to the hospital for what we didn’t yet know was his schizoaffective disorder.

I have had a very difficult time writing since Sandy Hook.  In fact I’ve hardly written at all.  I feel terrible fear about being mentally ill in this country of ours where some law makers are proposing that lists of the mentally ill, even those of us who are not violent, should be given to our local law enforcement.  Why are they even talking like that!?  The privacy laws that protect us from anyone looking into our medical records are intact and all the drum beating about lists and guns is not going to change the law.

So, now, instead of writing something more about mental illness I’m going to talk about being in Wyoming with my old mother and my two sisters: it’s Mom’s 89th birthday and the three of us have gathered to help her celebrate.  Our brother, Sandy, and his wife, came all the many many miles to southwestern Wyoming to visit our mother last week so now it’s just us girls and we love it!

Mom is not only turning 89 today but she is recovering from a horrible bout of shingles.  The itchies attacked her head and one eye but she has bounced back, almost.

The eldest sister is Tina and she is playing backgammon with Mom.  Glenn and I are sitting at the dining room table, our laptop’s open, the screens almost touching, back to back.  We’re planning a feast for this evening.

There are 12 dogs in this crowd:  Mom’s five, Tina’s three, Glenn has two but they’re not here, and my four.  There are also two birds, Tina’s, an African Grey and a Green Cheek Conure who are sitting in their traveling cages.  Tina has an intricate system for bringing her birds since they need cages that are large enough for them when they’re traveling.  Here at Mom’s they stay on a counter in the kitchen that opens into the living room so we get to hear them talk.  Kivu, the African Grey, talks proficiently and even conversationally.  Amazing!  It’s funny to hear Kivu call one of Tina’s dogs and the dog actually will come in and look around.  Tina and Glenn just left for a walk and I heard Kivu say, “we’ll be back in a minute”!

It’s heart-achingly beautiful here.  The Wyoming Range borders to the NW, the Wind River Range borders the E.  A huge hayfield lies below Mom’s house while stepped hills slowly build up to the mountains.  I remember when my son, Sander, was around three he told me he wanted to go to the purple mountains.  We loaded up in the truck and drove up into the mountains.  When we arrived and got out of the truck Sander burst into tears.  “Why are you crying?”  “Because it’s not purple!”  Silly boy.  He also loved ‘Harold and the Purple Crayon’.  Now he’s 30 and I have no idea if he still loves purple.  I’ll have to ask.

The air is clear and crisp.  There will be snow on some of the mountains all summer long.  We all step outside as darkness falls to look up at the billions of stars in the clear black sky.  Coyotes howl at night and during the day there are huge flocks of red-winged blackbirds at my mother’s feeders; they fill the trees with wild bird conversation.  I heard a Sandhill Crane this morning and stepped outside but couldn’t see it.  Sometimes Great Blue Herons fly over this country giving their calls.

My mother’s home is a magical place.  Our father passed a few years ago yet Mom insists on living here even if we all live far away.  Tina is the closest and I’m sure she’d appreciate one of us being closer but it’s not to be.

As a family, we have hashed out many things around this table where I’m sitting, one of the more dramatic being that I had to be admitted into a hospital for my bipolar disorder.  This table also heard the conversation surrounding my son, Calen, and when he had to go to the hospital for what we didn’t yet know was his schizoaffective disorder.  Tears and laughter, quiet and yelling have all happened here.  I’m grateful for that.  I’m grateful for our family and what we have all gone through together.

Mom just got up from a nap and is feeding her dogs.  I must feed mine next.  Then cooking her birthday dinner needs to begin.

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Got Depression? Me Too

Last night I told one of my closest friends that I’ve hit a low point. It sounds strange, but to be able to say that to someone who gets it, and doesn’t try to talk me out of it, is truly priceless. She didn’t say, “but look at all of the good things in your life” or “you just need some rest.” She let me say it, without judgment, without grimacing, without telling me that she only wants good news from me, especially since I’ve been chock full of bad news lately.

If asked how I feel right now, the first thing to pop into my head would be The Seven Dwarfs of Snow White.  Not all seven fit my mood, but Sleepy, Dopey, and Grumpy would be at the top of the list.  I’ll hold out for Happy (never lose hope) and Doc would be somewhat appropriate considering I’ve had my share of medical traumas recently.

The most apropos is Grumpy. If I made up my own Dwarf name, it would be Slumpy.  I’ve been in a mental slump for months.  On one hand, it’s good that I know why I’ve been so low, yet on the other hand I seem to be fighting a war that I’m unable to win. When depression sets in, it makes itself at home, setting up house, hanging paintings on the wall, placing potted plants on the windowsills.  Depression is not a stranger to me, it has its own key to my brain and uses it whenever it needs a familiar nesting place, just to remind me “Hey, I’m still around.  Don’t you forget it! Now, let’s see what you’ve got in the fridge.”

It’s times like these when I count and recount my blessings and all of the fantabulous people I have in my life.  Perhaps we don’t physically see each other as much as we’d like, yet I know they are there for me, that they love me, as I do them. They mean so much more to me than a fair-weathered friend who shows up when it’s convenient for them and only when I have good and happy things to talk about.  Why can’t these “friends” see that I would much rather be Happy than Grumpy/Slumpy?  This isn’t fun for me.  This isn’t what my family wants for me. I see the pain in their eyes when they listen to me berate myself or go on about “if only I started treatment at an earlier age, think about what I would have achieved by now,” when unfairly comparing myself to my classmates and peers who’ve made it big from my standpoint.

You would think I’d have learned not to compare my insides to other peoples’ outsides, but that is what depression does.  It’s so cruel.  I question if comparing my life to others helps me in any way and the answer is always a resounding NO. All it does is take up precious space in my brain when I should be focusing on my accomplishments and positive progress. The good stuff should rise to the surface, instead of the wasteful muck.

Last night I told one of my closest friends that I’ve hit a low point. It sounds strange, but to be able to say that to someone who gets it, and doesn’t try to talk me out of it, is truly priceless.  She didn’t say, “but look at all of the good things in your life” or “you just need some rest.” She let me say it, without judgment, without grimacing, without telling me that she only wants good news from me, especially since I’ve been chock full of bad news lately.

For years I rhetorically asked why I have depression.  People who have suffered through horrific things that I can’t ever imagine have never been depressed.  The only reason I come up with is that my brain is wired differently than people without depression. On the upside, by living with this illness, I have an immense appreciation for the small pockets of joy that come my way.  The contrast between depression and lightness of being is like the North and South Poles.

Having hit this low point, I’d like to think there’s only one place to go from here — up.  I don’t want to jinx myself (I was raised in a superstitious family) but I can visualize things getting better soon.

Was it the Seven Dwarfs who whistled while they worked? I’m pretty sure it was them, but at the moment, Grumpy is too Sleepy to Google it.  If I could whistle, I’d give it a shot, since it’s a possible remedy to depression I’ve never tried, but then I’d really annoy anyone within earshot and I couldn’t do such a thing to my dog Anya.

If only depression could be swept away with a broom, or, get sucked into a vacuum, life would be easier and I’d be less Grumpy. But then again, I’d have less character.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Why is it so hard to take my own advice?

It’s been a rough week. Mental illness has again reared its ugly head, this time in the form of a deep, insidious depression, lurking, creeping, stealthily wrapping its tentacles around my daughter, dragging her down, dimming her spark, holding her back from the things she enjoys.

It’s been a rough week. Mental illness has again reared its ugly head, this time in the form of a deep, insidious depression, lurking, creeping, stealthily wrapping its tentacles around my daughter, dragging her down, dimming her spark, holding her back from the things she enjoys. It’s not really a surprise, this time of year is notoriously difficult and we’ve been trying to dodge the bullet for months. So why is something so familiar, so predictable, so incredibly draining, deflating and demoralizing?

In order to really answer this question, I’ve had to force myself to look honestly, objectively (as much as possible) at the dynamics that play out when one of my kids becomes ill. The truth is, while I may have a pretty good sense of what to say and do (or NOT say and do), and I can effortlessly share that advice with other parents, when it comes to my own family, all of that knowledge just flies out the window. Our own psychiatrist has cheerfully told me on several occasions that this is normal. “You’re not supposed to be objective, Nanci, you’re her mother”. Great. Affirmation from a professional that I’m less than adequate in the parenting department.

In reality, once I get past that little pity party that I just threw for myself, I can focus on what our very wise doctor really meant. Parenting a child with a mental illness is hard, but we have a very important and rewarding role to play. First, let’s take that honest objective look I was talking about. When my child hurts, as a mom, I want to fix it. I want to make everything all better with a hug, a kiss, lots of TLC and chicken soup. Fine for a cold, flu or broken arm. But mental illness (or any chronic condition) is different. It’s never 100% all better. And we often feel like we’re waiting for the other shoe to drop. We embrace the good days with a joy that most others take for granted. But there’s that little cloud lurking, and when it swoops in, so do a rollercoaster of emotions. The warrior in us prepares for battle, calling the school, the therapist, the psychiatrist, spending hours on the computer researching or talking with other parents. Is this a blip, or something more? What were the triggers leading up to this? What’s our battle plan? The nurturer embraces my child, holding her, comforting her, struggling to find the right words when often there are none.

And then it gets rough. Our daughter is inconsolable, flipping through moods like my husband flips through channels with the remote. I can’t keep up, I can’t shift gears to react to the horrible, agonizing sadness, the anger, the frustration, the hopelessness, the perceived futility of the situation and the incessant criticisms of why, why, WHY can’t I (Mom) do ANYTHING right??!!! Add in the normal teen stuff of ‘you just don’t GET IT’, ‘you’ll never understand’ and I’m sunk. My rational side tells me ‘It’s the illness talking, not my daughter’. But my emotional side is quick to take over, personalizing, piling up my defenses and unleashing (in my mind, and occasionally my mouth) a litany of ‘look at all we’ve done for you, how can you say those things??!!’ So. Not. Helpful.

My biggest problem is that I can’t stay in the moment. I can’t just be, accepting that for right now, my daughter feels awful and whether or not she misses school today, tomorrow, or all of next week is really not as important as helping her to feel even a tiny bit less alone right now. I start to worry about what other people think (Really? After 12 years I’m still hung up on THAT??). I worry about whether my daughter is going to be able to catch up on the school work she is missing. I agonize in anticipation of battles when she sits for hours watching TV, eating junk food or eating nothing at all, while homework piles up around her.
I ought to know by now that in the big scheme of things, it WILL all work out. Our family is the poster child for nontraditional education models, and therapeutic interventions. We’ve tried it all and we have a huge bag of tricks to draw from. I should remember that any activity that gives my daughter a glimmer of light, a few moments of happiness or anything that moves her away from deep, cavernous sadness is a good thing. I really should trust that when she is feeling better she will once again feel hopeful, she will have some resiliency to use the supports and the resources we’ve fought so hard to set up for her. She will be able to tackle school work, chores and responsibilities.

I need to remind myself of all of my daughter’s great qualities, and I need to remind HER of those qualities. When she is beating herself up about succumbing once again to her illness, missing school, throwing a wrench into our family routine . . . my daughter needs me to be the stabilizing force of reassurance. I don’t need to tell her that it’s going to be ‘ok’, because right now it’s NOT ok. But I do need to tell her that I love her, I’m here for her and that no matter how awful she feels, she is NOT alone. Depression is lonely and isolating enough. My physical presence, a calm, soothing demeanor, may be the best antidote that I can offer.

One way or another, my daughter WILL move ahead in life to pursue her dreams and ambitions, to tap into her talents. And the best way that I can facilitate that is to just love her for today, no matter what her mood, no matter what her words, no matter what my own frustrations may be. My dad once told me ‘children need love the most when they are the least lovable’. Simple words to remember when things feel anything but simple.

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 10 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci and her husband are parents of three daughters ages 16, 18 and 20.  The oldest and youngest were diagnosed with bipolar disorder at ages 9 and 10 respectively.

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Exorcise Exercise

Exercise and keeping in shape are key elements in the fight against depression. Maybe I’m just afraid to commit to a routine because if I don’t follow it, I’ll feel like I’ve failed. Just hearing the term “working out” causes me anxiety. It just makes me feel so pressured when someone asks “so where do you work out?”

When I look out of my living room window, I see a man outside on his balcony — his apartment building directly across from mine.  He is riding a stationary bike.  He is an elderly man, and he is naked, head to toe.  No matter the season, he’s out there, every day. He’s as pale as the day he was born, with a slim frame and saggy flesh.  On days when the temperature is below freezing, he wears a wool hat.  Since he lives on a high floor, his audience is restricted to those, like myself, who can see him by looking straight ahead. I have no idea how many people are able to see him, but if he sold tickets to his show, I’d be in the VIP section.

I give this man a lot of credit. He’s obviously at the point in his life where he just does not care about what other people think of him.  Or, perhaps he’s been doing this his entire life.  Either way, he’s made the choice to exercise in public in his birthday suit, and I bet he sleeps better than anyone who works out at any of the fancy sports clubs riddled throughout New York City.

To be honest, I haven’t seen “old naked man on the bike” for at least a year.  Which tells me that he was reported to the police and forced to peddle inside, or there’s a possibility he moved to a warmer climate, or, sadly, that he’s riding the big stationary bike in the sky. I miss him, sort of.  To me, he symbolized determination and tenacity. His daily routine reminded me of the inscription on the James Farley Post Office:  Neither snow nor rain nor heat nor gloom of night stays these couriers from the swift completion of their appointed rounds. So much for that – I hear they’re eliminating Saturday mail delivery this coming August.  But I digress, the old man was committed to exercise, to staying healthy and nothing, apparently, came between him and his bike.  Not that I would ever use binoculars to get a closer look at his physique – but it was apparent from my viewing point that he could easily have been in his 90’s and yet he made no excuses to not exercise – he just did it.

By stark contrast, I view any form of formal and planned exercise as an unwanted obligation. If I had all of the money I spent on unused gym memberships over the years, I’d be, well, not rich, but at least not self-chastising, feeling like I wasted hard-earned cash time and again. My intentions were always to get into a physical routine, yet it never panned out that way.

Exercise and keeping in shape are key elements in the fight against depression. Maybe I’m just afraid to commit to a routine because if I don’t follow it, I’ll feel like I’ve failed. Just hearing the term “working out” causes me anxiety.  It just makes me feel so pressured when someone asks “so where do you work out?” as if it’s a given that I do so — an expectation that everyone should and does physical training as part of their weekly routine.

Like so many other things, I have to approach exercise the same way I manage whatever daily tasks appear at times to be monstrous — like laundry and loading the dishwasher. Depression has a loud voice and can be very convincing in telling me what I’m not capable of.  I’ve had to learn to turn down the volume and do chores in small segments or else I get completely overwhelmed and want to shut down for the day. That means, instead of waking up with dread triggered by the thought of getting on a treadmill, I take the stairs instead of the elevator. That way, not only do I feel better about myself, (even if my thighs are sore the next day), I still got in some cardio and toning without working out, per se.

While I can say that I hope to one day have a regular physical exercise routine, whether it’s yoga or Zumba, I’m not sure it will ever happen.  I’ll do what works to keep my blood pumping and endorphins flowing.  Just don’t expect me to ride naked on a stationary bike on my balcony when I’m in my 90’s – the last thing I’d want is to have a nosy neighbor blog about it.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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Walking and Cycling to End Stigma by Eric Ward

I’m a single father of 3 teenage daughters and I live with mental illness. I’m considered a high functioning individual with Schizophrenia, Obsessive Compulsive Disorder/Anxiety with a little Depression on the side. To be honest, currently, I do not know if I am considered “High Functioning”.

My name is Eric Ward, I’m a single father of 3 teenage daughters and I live with mental illness. I’m considered a high functioning individual with Schizophrenia, Obsessive Compulsive Disorder/Anxiety with a little Depression on the side. To be honest, currently, I do not know if I am considered “High Functioning”. What’s so common with mental illness is that one can sometimes take a step or two backwards. I have done so “again” recently and I have no idea what triggered my slide backwards.

However, I did the right thing. I called my doctor, we talked things through and I am currently undergoing a medication change. This is the first time in years that I’ve had to change my medications – I had a good run for a few years. Now it’s time to start again. One of the major misperceptions people have about mental illness is that you can take a few pills and then you’ll be better. In actuality, it’s an ongoing daily battle that one must never give up.

The misperceptions around mental illness are what drew me to Bring Change 2 Mind. I saw a sign that said: “Imagine if you were blamed for having cancer.”  It surprised me so much. I’d been trying to say the same thing for years to family and friends who did not understand. Some wanted me to hide and live in the shadows or to just disappear. Mental illness is not a simple problem that will go away with a few pills. It unfortunately “in many cases” takes a lifetime of medication and therapy. Someone living with mental illness should not feel as if he or she should ever hide. It just makes the problem worse. Trust me, I know from personal experience that hiding from mental illness does not work.

After discovering Bring Change 2 Mind I wanted to help but I was in no position to donate much money. What I could offer was to take my passion for cycling and bring awareness to BC2M. With the support of BC2M staff, I put their logo on the cycling jersey that I wear when I race. Since I was excluded from being on a cycling team/club I was able to put anything on my cycling jersey. I thought this was a good form of free advertisement for the charity and a good way for me to spread the word and support their mission.

It was not long after I started racing with my custom jersey that I was on Bring Change 2 Mind’s Facebook page and I learned about their partnership with NAMI Walks. BC2M was looking for team captains and I was surprised to see that the Los Angeles area did not have a volunteer leader. I had never done a NAMI walk before or been a team captain of anything! I decided to help Bring Change 2 Mind by becoming their captain. To be honest I was worried a great deal but I volunteered anyway.

Bring Change 2 Mind paired me up with a co-captain. It was, and is, very hard for me to work with other people.  My co-captain, Andrea, was very kind and understanding – she understood me – she has a family member who lives with Schizophrenia. Andrea treated me with great respect, was patient and helpful, and turned out to be one of the few people can get me refocused. My anxiety level was particularly high because I did not know what to expect of the walk.  The fantastic NAMI volunteers helped us check in our team, distribute literature and guide us in our team efforts.

I was also very fortunate that my three daughters were excited to help out at the walk.  All three of them looked so cute in their Bring Change 2 Mind T-shirts.   While I was sitting at the table with my funny, adorable daughters, people started approaching the table and asking about Bring Change 2 Mind.  Because of my illness I am not very social.  However, I soon found myself talking about the charity, that Glenn Close and her family had started this wonderful organization to end the stigma of mental illness and about my own personal experiences. It was a profound moment in my life (and that is putting it mildly). I was around a great deal of people yet nobody was judging or mocking me. Many had similar illnesses. Others had family members that battle mental illness. Some people were at the Los Angeles Walk just because they truly care about others. With so many interesting people to talk to, the walk itself went by really quickly.

It was a wonderful and eye opening experience.  All of these years I had surrounded myself with people who did not care or understand and now I was around hundreds who did care, understand and struggle as I do. I’ve spent most of my life in isolation and I’ve realized that I don’t have to anymore. I can’t express in words how thankful I am to my co-captain Andrea “whom is still my friend” and especially to Bring Change 2 Mind for giving me the opportunity to help them. I would like to say a special “thank you” to Cory from Bring Change 2 Mind for putting up with all of my strange emails and for being so kind to my children.  My children and I truly enjoyed helping out at the walk and look forward to doing many, many more in the future.  Helping out at the walk and raising funds made me feel very useful and gave me a strong sense of purpose.  Finally, I was helping to end the stigma that has plagued me most of my life.

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I Wish I’d Said That

As new parents, most of us are/were fastidious about taking our babies to the doctor for their weekly, monthly and annual well baby check-ups. As our children grow they are screened in school for everything from scoliosis to vision to head lice. However, at the same time, despite the fact that 1 in 5 children suffer from a medical condition that affects mental health, only 20 percent ever receive treatment!

Every so often, I read something or hear someone speak and all I can think is “I really wish I’d said that”! It’s one of those ‘aha’ moments when what was conveyed is so in line with my passion and beliefs, yet it completely eluded my brain’s ability to formulate, let alone articulate.

Such was the case this week when I read an article in the American Psychiatric Association’s newspaper ‘Psychiatric News’ by the APA president, Dilip Jeste, MD, entitled “We Must Do Better for the Children”. The bulk of the article is a compelling case laid out by Paramjit Joshi, MD, the president elect of AACAP (the American Academy of Child and Adolescent Psychiatry). Dr. Joshi speaks from the perspective not just of a child and adolescent psychiatrist, but also from that of a pediatrician.

As new parents, most of us are/were fastidious about taking our babies to the doctor for their weekly, monthly and annual well baby check-ups.  As our children grow they are screened in school for everything from scoliosis to vision to head lice. However, at the same time, despite the fact that 1 in 5 children suffer from a medical condition that affects mental health, only 20 percent ever receive treatment! And of those 20 percent, it takes an average of 8 to 10 years between the onset of symptoms and when treatment begins.  To me, any one of these statistics leaves not a shred of doubt that as a society we have to make children’s mental health a top priority. It shouldn’t be that hard. Dr. Joshi succinctly identifies key next steps which include:

1. Adapting a proactive approach. Clinicians need to anticipate and intervene before a disease begins rather than diagnosing after the fact. Early intervention saves lives.

2. Treating the child, not the diagnosis. In children, the same diagnosis can manifest very differently. The diagnosis is a starting point, not an end. The treatment needs to take into account environmental, social and developmental factors. Tell THAT to the DSM-V committee and the insurance companies.

3. Ensuring access to care. The best treatments in the world will fail if they are not made available to the 1 in 5 children who have a mental illness.  Legislators and voters, this one’s directed to you.

Dr. Joshi writes “The nation has a social and moral imperative to support the 1 in 5 children who need access to care. But it also has a practical imperative. Physically and mentally healthy children are more likely to become physically and mentally healthy adults. These children will grow up and enter our armed forces, our intelligence communities, our workforces, and our governments. Strengthening early access to mental health care strengthens communities and promotes stability and enables a free society.”

For those of us who ‘get’ the realities of mental illness in children, these points may seem glaringly obvious and simple. Yet we also know that turning these steps into reality seems at times to be insurmountable. Thankfully, we have people like Dr. Jeste and Dr. Joshi who articulate and publicize not only the urgency of children’s mental health, but what needs to be done. We, in turn, need to keep the conversation going, expanding, permeating until these facts and these steps are embraced as widely and naturally as those well baby check-ups. Society deserves this. Our children deserve this. And, as the article states, we MUST do better for the children.

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 10 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci and her husband are parents of three daughters ages 16, 18 and 20.  The oldest and youngest were diagnosed with bipolar disorder at ages 9 and 10 respectively.

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To Eat or Not to Eat

I used to be slim. No, I used to be downright skinny. Now I’m not and the history of my eating follows the history of my medications. I’m sick of it; I’m sick of being embarrassed by my looks. Just recently I have scrutinized my eating habits and have discovered that even with ‘medication on board’ I don’t have to eat everything in sight.

I used to be slim.  No, I used to be downright skinny.  Now I’m not and the history of my eating follows the history of my medications.  I’m sick of it; I’m sick of being embarrassed by my looks.

Just recently I have scrutinized my eating habits and have discovered that even with ‘medication on board’ I don’t have to eat everything in sight.  I’ve never used this word before as applies to me but, I’m a binger – there, I said it.  I’m a secret shopper for chips and ice cream, donuts and pizza.  I will eat well for a few days but then I get an undeniable ache to stuff myself; I want to feel my belly full to the max.  Why???  Well, I haven’t read much about binging because I just figured out that that is what I’m doing, so I couldn’t tell you why I succumb to this behaviour, but I do know that it has something to do with deluding myself, and emotion.  No kidding, right? There is a feeling of stress in my body when I’m eating good food but not enough to give me the feeling of being stuffed.  I cannot relax until I feel satiated, or, to be honest, stuffed.  Feeling stuffed puts a hold on emotion I don’t want to look at.

It’s like addiction, the arm stretching out with no input from the brain, to grab an alcoholic drink or crappy food or an inappropriate sexual encounter.  I have prevented that arm from grabbing a drink over the past 12 years, from grabbing an un-thoughtful sexual encounter over the past 9 years, but still haven’t been able to stop grabbing for food.  When I’m in the supermarket I’ll look around to see if anyone is watching me while I grab a bag of chips or a pizza or ice cream.  I feel ashamed when I check out but that doesn’t stop me.  I will even go so far as to tell myself that this bag of chips won’t put any weight on, that the ice cream will just go right through me.  Unbelievable!!!

Alcoholic drinking is unpleasant to witness.  Stuffing a fat face is just as unpleasant to witness.  Both are signs of addiction.  For me, admitting I was powerless over alcohol brought me strength.  I must try to admit that I’m powerless over food.

I can make excuses that my medications are making me XL but that excuse never really holds.  Yes, the appetite that grips me in the evening after I take my medications is real; the difference is that I can eat something that’s good for me or something that isn’t good for me to try to quell that malicious appetite.  I have discovered at times that I undermine eating something that’s good for me by eating way too much of it: too much of a good thing!  I’ve tried Nutrisystems and Weight Watchers and Sensa.  Nutrisystems was the most disgusting food I’ve ever encountered and couldn’t even finish the box.  Sensa was stupid and the meetings for Weight Watchers were one too many meetings for me.

For now I’ll admit to the foods that are adding to my waist.  I’ll put blinders on myself in the market to avoid purchasing those foods that have such a hold on me.  I’ll try to identify the emotions that undermine my mind-set and find me running to food.

I’ll let you know how I do!

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Taxi Scare

The winter blues have me struggling with higher than normal anxiety levels, mood swings, sadness, lack of motivation - it’s like seasonal depression on steroids. Yeah, there have been pockets of joy here and there but I wish I could bottle them like a fragrance and give myself a spritz when needed.

The winter blues have me struggling with higher than normal anxiety levels, mood swings, sadness, lack of motivation – it’s like seasonal depression on steroids. Yeah, there have been pockets of joy here and there but I wish I could bottle them like a fragrance and give myself a spritz when needed.

As I left my apartment yesterday to meet a dear friend of 30 years, a thrill passed through me, as if I was about to board a plane to Rome or Paris, instead the backseat of a NYC taxi. I felt so in need of a two-hour vacation from my computer and life. There was giddy anticipation of spending time with my trusted confidante. With him I can be my genuine self – depression and all.

The taxi headed south on Lexington Avenue; it was a gray day, and the traffic heavier than normal but I didn’t mind, I was eager and excited to see my friend and leave my troubles behind over a scrumptious lunch and cold glass of Pinot Gringo. Settled in the back of the taxi with seatbelt fastened, I scrolled through my iPhone checking the weather forecast, my spiritual horoscope, and my Twitter feed. My short holiday had begun and I was surprised to find myself almost smiling while the driver made his way slowly through the crowded streets.

We suddenly stopped short. My phone flew out of my hands and the previously silent driver startled me by yelling, “I hate traffic. I want to kill myself! I swear I’m ready to take my gun and blow my brains out.” During his explosive outburst, he reached inside the glove compartment frantically searching for something. I looked up to the sky, well, to the roof of the cab, and mouthed, “Why me?”

As I’ve learned, when someone threatens to take their life, you always take them seriously, because you never know.  Maybe he shouted these words all day long? How was I to know what I was dealing with? But I could see that the driver was extremely agitated and for all I knew, he was about to pull out a pistol and put it to his head. Not something I wanted to witness. I was trapped in the taxi, caught between a delivery truck on one side and an SUV on the other.

“Please don’t kill yourself,” I said, calmly, trying to find my iPhone underneath the seat. “Why, what difference does it make to you?” he yelled.  “While I understand your frustration with this awful traffic, it’s just not worth killing yourself over. Have you looked into a different line of work?” He ignored me. His head shook back and forth as he yelled, “I can’t take this.”

While frantically looking out the window to get anyone’s attention, I asked if there were someone I could call for him. I asked if he’d like me to go with him to a hospital.

The traffic began to move again, he stopped his hand from the glove-compartment search frenzy and within a few minutes we pulled in front of the restaurant. The driver seemed calmer as he stopped the meter and said, “Ten fifty.” I asked if this was the end of his shift. He nodded while staring straight ahead. I paid the fare, plus an extra tip and wished him a peaceful day. As soon as I closed the door, he screeched away.

Feeling sad, I wondered if I should’ve done something more. I questioned my judgment for leaving him in his fragile state of mind.

Ugh, sometimes I wish I could let things go and not be so hard on myself.  But I really did understand his desire to make his troubles go away – for good. I’ve been there before, and I’ve learned that ending my life is never the right choice.  Hopefully this man will come to realize, before it’s too late, that suicide is a permanent solution to a temporary problem.

Adrienne Gurman has over 20 years of experience in advertising, marketing and magazine publishing.  She is currently the Vice President of 1212-Studio, a product design company in NYC.  A native New Yorker, Adrienne lives with her husband and their vivacious chocolate lab, Anya.  Adrienne began volunteering for Bring Change 2 Mind not long after the organization was founded, and has since been a leading advocate for fighting the stigma that surrounds mental illness. She has lived with Major Depression since the age of 12. Adrienne writes a weekly blog for esperanza magazine and continues to be a growing voice in the anti-stigma community.

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When Tragedy Hits Close to Home: Turning Fear into Compassion

As a nation, lately we’ve become hyper vigilant when it comes to mental illness and violence. Almost everyone seems to have an opinion about a) the problem; b) the cause; c) the solution; and perhaps most importantly in the eyes of some, d) who is to blame. As someone who has been immersed in the world of mental illness for a dozen years, I have a pretty solid foundation for my opinions. But something happened today that gave me a deeper perspective.

As a nation, lately we’ve become hyper vigilant when it comes to mental illness and violence. Almost everyone seems to have an opinion about a) the problem; b) the cause; c) the solution; and perhaps most importantly in the eyes of some, d) who is to blame. As someone who has been immersed in the world of mental illness for a dozen years, I have a pretty solid foundation for my opinions. But something happened today that gave me a deeper perspective.

I received a phone call this morning informing me that a colleague of mine has been impacted by an act of violence related to mental illness. The impact was personal, profound, tragic and irreparable. Once I got past the initial shock and disbelief and started gathering the still sketchy bits of information, my mind got stuck. I got stuck on the fact that what happened really has very little to do with mental illness. This has to do with people about whom I care. This is about a family; a mother, a father, a daughter, a son, a brother, a community. It’s about life – hopes and fears, dreams, challenges, hurdles, barriers, break throughs, the unanticipated, the unexpected.  Yet the news clips and the photos seem to miss all of that, just ominously intent on portraying someone who should be feared, dehumanized, and stereotyped. The reports are punctuated by that all too familiar phrase ‘the family had concerns about the accused’s mental condition’.

Here’s why I’m stuck. All I can think of is: We’ve got this all backwards.
Violent acts occur every day in this country. In 2010 there were 16,259 homicides, 11,078 of which were committed with a gun. Studies show that approximately 10% of those homicides (1,626) were committed by someone with a severe mental illness. That leaves over 14,000 homicides committed by ‘sane’ people. Are these somehow less newsworthy? Or should any of these be newsworthy at all?

Deaths occur in this country every day. Homicides don’t even make the top 10. Heart disease, lower respiratory disease, Alzheimer’s, diabetes . . . these are way up the list. People are dying right and left. And many are dying long before their time. The infant mortality rate in 2010 was 66% higher than for homicides. Should any of these killers soar to the top of our political agendas?

Now, let’s take a look at mental illness. Over 38,000 people in the US died by suicide in 2010, more than double the number of homicides. And statistics show that 90% of those who died by suicide had a diagnosable mental illness. To me, that’s alarming. Does suicide generally make the news (unless a celebrity is involved)? NO. It barely makes the obituary, generally swept under the carpet with the euphemism ‘passed away suddenly/unexpectedly’.

If little is said about the loss of life from suicide, there is the even less mention of the diminished participation in life that comes with mental illness. The National Institute of Mental Health (NIMH) reports the impact of different illnesses in terms of ‘Disability Adjusted Life Years’ or DALY’s which measure the years lost to illness, disability or premature death. Guess which illness is out in front?  Neuropsychiatric Disorders (aka mental illness) makes of 28.47% of the total DALY’s, more than DOUBLE the impact of the #2 illness, Cardiovascular Disorders, at 13.94%.

For every life lost to death by suicide, death by homicide, death directly attributed to mental illness, there are hundreds more lives on hold or hanging on by a thread under the unbearable anguish and pain of depression, schizophrenia, anxiety , bipolar disorder, and so on. Imagine a child huddled in a ball under her covers, holding her head, crying and saying, ‘make it stop, Mommy, make it stop. I just can’t do this anymore, I just can’t take it’. That level of pain would earn a morphine drip in the ER if she had a broken arm to attribute the pain. But there isn’t any morphine for the relentless pain of depression, or the agonizing, crawl out of your skin discomfort of anxiety. It’s pretty isolating being that mom or that little girl. And it’s pretty isolating for my colleague in the midst of a terribly misunderstood tragedy.

So if the media, if our politicians, if we as a nation, are finally going to sit up and take notice of mental illness, let’s do it for the right reasons and with the right approach. I’m in NO WAY minimizing the impact of the mass tragedies in Newtown, Aurora, Tuscon and elsewhere. Nor am I minimizing the impact, the pain and loss of other illnesses and disorders.

There is no way to quantify or measure one loss against another other as more or less tragic. Every loss of life is tragic. Every loss of the full potential of a life is tragic. But let’s take an honest look at our motivations. We need to act out of compassion, not out of fear. Look back on our views towards cancer. In the 70’s the ‘C’ word was spoken in hushed voices, in fear. Irrational fear based on ignorance and misunderstanding. Thankfully now, 40 years later, pink ribbons have universal recognition, eliciting support and compassion. We MUST approach mental illness the same way we approach anything else that threatens the quality of human life. And maybe, just maybe, it won’t take us 40 years to get it right.

Nanci Schiman is a licensed social worker with a Master’s degree from the University of Wisconsin-Madison.  She has over 10 years’ professional experience in child and adolescent mental health, family support, advocacy, writing, public speaking and collaborating with local and national mental health organizations. On a personal level Nanci and her husband are parents of three daughters ages 16, 18 and 20.  The oldest and youngest were diagnosed with bipolar disorder at ages 9 and 10 respectively.

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Habitable

I am having a peculiar day and I am hoping tomorrow will be different. The highlight of this day has been discovering that this evening, at 8 o’clock, I can catch a new episode of Law & Order. A 2013 episode. But it’s only 5:50 in the evening and I don’t know what to do with myself. All I want to do is read and read and read.

I’m lying on my couch, staring up at a spinning dead fly hanging from a single fiber of spider silk.  I am having a peculiar day and I am hoping tomorrow will be different.  The highlight of this day has been discovering that this evening, at 8 o’clock, I can catch a new episode of Law & Order.  A 2013 episode.  But it’s only 5:50 in the evening and I don’t know what to do with myself.  All I want to do is read and read and read.  That doesn’t sound so bad but I’m not happy with myself; I feel dull and useless.  I’m not crazy about the book I’m reading and I thought I would be.  It’s a science fiction book from 1972, when I was into sci-fi, written by our great John Brunner.  I remember this book being one I loved and was excited when I found it on Abebooks.com for $3.  Now that it’s in my hand I am feeling particularly old; some of the words he uses are so 70’s and are making me feel old or, I should say, I’m making me feel old.  Words like: ‘fuzz’ for the police, ‘you dig?’ for ‘you understand?’.  I can’t believe I used to use those words!

I know what to do when I feel like this: walk, write, drive to town to see other humans, but mostly just get out of the house.  I’m fortunate that my son, Calen, and our friend Mike are driving out here to get a preliminary look at what needs to be done to my little house to make it warmer and more habitable.

After Calen and Mike arrived we walked into my livingroom and Calen spotted the fly, hanging as it was.  He pinched the dead fly and pulled down the strand of spider silk.  Strange, but I’d become a bit fond of the fly, dead as it was, and felt my heart skip a beat when it was handled so nonchalantly.  I told him, under my breathe so he didn’t hear me, that I’d just written about that fly.

Outside, winter coats buttoned up, hats pulled low, we walked around my house and discussed all that needs to be done.  I am so very familiar with this little place and have spent many hours musing about how I want it changed for the better.  I have drawn plans in my head and someday hope to have a little jewel of a house.  The roof, number one priority, is covered in orange lichen and is beginning to cave in a bit, especially on the south side.  I am amazed that the only place the roof has actually crumbled is over the pump house.

Calen spotted a Golden Eagle when we were standing outside, flying over us; so beautiful, so huge as we stood, our hands in pockets, stamping our feet now from the cold.

Just now I spot that same eagle flying past my study window.  I’ll have to be careful of Snitz when she goes outside, all seven pounds of her.  Eagle food.  Now THAT would be a bad day.

I notice that it’s snowing; tiny flakes show up against the dark green junipers on the hill opposite my house.  I just spoke to a friend in Boston who is scrambling to get home in the huge blizzard that’s hitting the east coast.  It’s the blizzard of February 8th, 2013.  I wish the blizzard was hitting here in Montana because we can take it – there are so few of us, under a million, and we’re prepared for snow, at all times!  I hope that the 23 million people this eastern storm will hit stay safe, stay warm.  The snowflakes outside my window have stopped.

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