I’m Right Here

By September 16, 2015Blog

I’ve been trying to understand how people experience one another. When I watch them communicating it seems foreign to me. It appears effortless, but I know that’s not possible. There’s a history to it, a biological sleight-of- hand.

Human interaction carries with it a lifetime of social data. Decoding nuances of body language and subtleties of speech evolved out of necessity, one tribe to another, as we met along the road of life. So why do I find myself standing in the ditch?

The answer is social impairment—an unfortunate byproduct of many mental illnesses, and a key risk factor in mine. Schizophrenia is haunted by misunderstandings. Too often connections never get made.

I’d like to tell you that I’ve accepted this fact, and that I’ve overcome one of the most difficult aspects of living with this disorder, but I’d be lying.

I can’t always account for the nature of my symptoms, but I understand that they’re at the core of the disconnect. My occasional inability to distinguish what’s happening from what’s not creates a fluid barrier of uncertainty. Compartmental speech is not my forte. Delusions of reference form the content of my beliefs. While initially entertaining to some, my pension for free association becomes rapidly annoying to others.

Medication helps to slow my synapses, and therapy enables me to consider a common vantage point, but beyond that, the data collected in my disordered mind does little to enhance my attempts at socializing.

Working memory deficit makes conversation challenging because I’m not always present in a commonplace way. Depersonalization and derealization make me question the value of being here. We’re told to let experience be our guide, but when nothing is anchored in reality, reliability becomes random at best.

In those moments when I’m not capable of thinking linearly, when I’m dealing with audio hallucinations, when I have no point of reference other than the obscure associations my disorder creates, I unknowingly risk my connections with others. I assume that we’re exchanging social cues when we’re not. I have no innate capacity for discerning this, so I study you for clues. I imitate your mannerisms. And while I sense that I’m not perfectly in sync, I wonder—to what degree do I appear alien?

Early detection might have made a difference in the quality of my life, but that’s not what happened. I went years without a diagnosis or treatment. People defined me as eccentric; it made my behavior acceptable. The conventional image of writers and artists was far more romantic than the damaging stereotypes attached to schizophrenia.

Depictions of violent madmen persist, and the resultant stigma triggers a reactive denial in me. I’m not that monster. But if I trust you, and you believe the cliché, then we both unwittingly uphold the status quo, inviting shame and depression into the picture. Framed that way, I am the beast. From there, things just get ugly, which is why even the simplest contact is so important to my survival.

Statistics show that nearly thirty percent of people diagnosed with schizophrenia will attempt suicide. Unpredictable thought processes make intervention difficult, increasing the risk of successful completion. Meaningful relationships with family and friends could prevent this. It’s not without effort, but it’s possible and essential.

Making friends can be challenging for anyone. There’s maintenance involved: the provision of courtesy, respect, understanding, and kindness, without expectation of return. Living with schizophrenia presents a unique set of conditions. I understand that investments are necessary, but my symptoms can alter that perspective in a heartbeat. Keeping the factors in focus means I have to remain on point.

Schizophrenia is not something that most people can relate to. I’ve lost people I cared for, but it needn’t have been that way. Perhaps it was hard for them to understand how important they were to me, and how much they helped. Facing the challenges of mental illness together might have lowered their frustrations and allowed for better communication. Hindsight is always twenty/twenty.

I’ve had people tell me they were afraid to befriend me when they first heard that I had schizophrenia. Thankfully, for both of us, they took a chance and overcame their concerns. That’s what it looks like to advocate for change. Interacting one-on-one. Out of the ditch and back onto the road.

Those romantic images of poets and artists succumbing to madness may have appealed to my adolescent heart, but the truth is so much more macabre. Alien or alienated, isolation is not worth the toll it takes. I can’t imagine spending the rest of my life alone, but then again, I can. I’m not going to let it stop there. Reaching out is a risk I’m willing to take. For my health, my happiness, and for whatever follows. I’m right here.

 

22 Comments

  • Sue says:

    Thank you for sharing your story, which is so beautifully written in a way that clearly expressed your emotions and feelings thru your journey from the heart.
    I know your courage to reach out thru your story will be well received and you will come to feel connected to a positive group of advocates.

    • Henry Boy says:

      Thanks, Sue. Even though I’ve being writing for BringChange2Mind for some time now, this is my first blog to really address my difficulty with social impairment. I didn’t understand it or have any way to, but recent events in my life brought a new awareness. I was hoping that by sharing it in this week’s blog I could help others who struggle, too. Loneliness is horrible, and living with a mental illness makes it seems more so. You’re right about connections and advocacy. Thanks so much for commenting!

  • Donna says:

    Dear Henry, thank you so much for sharing your experiences, and in such an eloquent manner. I think you are amazing. My son has been diagnosed with schizophrenia/schizoaffective disorder. He hasn’t ‘surrendered’ to the fact, and it has been difficult for us both…on many levels. He has lost jobs, friends, dignity, hopes, dreams. He’s been through hospitals, courts, jails, programs…and I have been forgoing my own life to keep him in the here and now. I’m not complaining…he’s worth it to me. But it is not easy. Your writings help me to better understand him. For that, I am most grateful!

    • Henry Boy says:

      Thank you, Donna. The “surrender” that I so often write about is my way of understanding my role in dealing with the symptom of anosognosia. Often, I still can’t wrap my head around it, but I try.

      I’m sorry that your son has lost jobs and friends and dreams; I’ve been there, and I understand how defeating it can be. That you work hard to help him manage means a lot; I hope that you’re getting assistance from outside sources, too. My friend who helps me navigate some challenges has kept in contact with my therapist, and it’s been beneficial for us both. Like you said, it can be difficult all around. Bless you for being there for him.

      Here’s a link from NAMI on anosognosia. I find that info like this helps me a little. Talking to my therapist and my doctor helps me, too.

      http://www2.nami.org/Content/NavigationMenu/Mental_Illnesses/Schizophrenia9/Anosognosia_Fact_Sheet.htm

  • Marta says:

    carry on warriors

  • Shannon says:

    As someone who has suffered three psychotic breaks, I think you hit the nail on the head. Thank you for painting a clear and enlightening picture of how this mental illness affects so many aspects of one’s life. You not only spoke for yourself, you represented so many of us battling with delusions and hallucinations. And you did a fantastic job it!

    • Henry Boy says:

      Thank you, Shannon. I’m sorry that you’ve had to go through the breaks – I’ve been there too many times and you’re right about them being a battle. It’s so hard to believe that we have friends or connections at all when we’re in that dark place. Times of being healthy, and feeling like I can maintain those times, sure helps me see that the delusions and voices are lying and that there’s something better on the other side of psychosis. Now to maintain *that* feeling. Advocacy and mental health – we’ve got our work cut out for us. Thanks again, Shannon. Cheers!

  • Tony says:

    Thank you so much for sharing your story Henry, a brave man fighting a battle on a daily basis bringing strength to others

  • Carol S@ says:

    Keep shining your light, Henry! You have given me a better understanding of my loved one. Together, we will all end the stigma. Nobody should be pushed aside.

    • Henry Boy says:

      You’re right about that, Carol – no one should be pushed aside, ever. We all have something to contribute.

  • Karen says:

    Thank you so much for sharing. When I read your thoughts & experiences I believe it helps me to better understand my 18 yr old son who was diagnosed earlier this year.

    • Henry Boy says:

      Thank you, Karen. I am happy for you and your son that we live in a time when early detection and diagnosis is available, and better treatment plans are, too. I lived for many years without either, and it made my transition a rough one. If my words help, I’m grateful for that. Thank you so much.

  • Phil Knight says:

    Always Honest! Always True! Nice Work Again Henry!

  • Dawn says:

    You’ve given me insight into son’s experience which he’s never been able to share. Thank you.

    • Henry Boy says:

      Thank you, Dawn. It’s taken a while for me to be able to share my thoughts. The encouragement from readers like you means a lot to me.

  • Muyoka says:

    Thank you so much for your beautiful piece, so many yes moments,”standing in the ditch” “alien”, “social impairment”, please continue to share. An amazing peace comes in the fellowship of others making known there struggle.

    • Henry Boy says:

      There is peace in the fellowship of like-minded individuals, Muyoka, I agree. Thank you for your kind words and insight.

  • Jocelyn S says:

    @HenryBoy, you continue to dive deep and come up recharged and brilliantly eloquent. You have that way of telling it like it is; I am deeply grateful for your transparency. Being the truth teller isn’t easy and for that I applaud you with an eternal standing-O! Each time I read a piece you have written I am humbled beyond words and put to contemplative meditation for days. I cherish each word you write because I know how carefully you choose them and how meaningful your collections have become. Because you speak front the depths of despair and the darkness of psychosis, it’s my duty and your fellow in the fight to end stigma to stand proud and declare a truce on lies and hiding. My neurobiological brain disorder and everyone else’s is no longer hidden in silent shame because of the bravery, courage, and pure boldness of people like you, who have taught us to stand tall and advocate for what is right, and what is just. Thank you from the bottom of my heart for doing the right thing no matter how difficult it is. You are a win win, @HenryBoy!!

    • Henry Boy says:

      Thanks, Jocelyn – such encouraging words! Sharing our stories is one of the best ways I can think of to beat the stigma and pave the way for future generations to experience social understanding, positive support, and sound mental health treatment options.

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