Reading the Signs

By Henry Boy Jenkins

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“Knowing that you’re crazy doesn’t make the crazy things stop happening.” ~Mark Vonnegut, The Eden Express: A Memoir of Insanity.

In the past month I’ve experienced this firsthand, and it’s devastating. The conditions of my illness force me to rework my regimen, absorb new information, and try to wrap my disordered thoughts around whatever recent configuration I’m faced with. This would be hard enough if I were a normal person; living with schizophrenia exacerbates the situation.

I make it a daily practice to educate myself about my diagnosis. I’ve spoken with psychiatric and medical professionals, therapists and research scientists. I scour bookstores for knowledge not available on the Internet, and spend hours separating online fact from fiction. This is not an area of my life where uninformed opinion holds any credibility. It is a place where education and experience converge to create a whole picture. Not the bucolic paint-by-numbers of the shiny, happy people, but something grittier, more tangible, like puffy paint graffiti on a vintage gravel wall.

Nothing prepares me for the game changers. Emerging symptoms come with their own rules; symptoms that morph tend to sideswipe my balance. Coping is futile. I’ve run my dignity through the wash so many times that it’s lost its color. I’m left with two tools, surrender and acceptance. They work, but it’s hard to claim success when I feel defeat. So I inquire, study, and strategize further to increase my mental health skill set. Prudence is proactive.

As a child I had a habit of checking out, of living in my own world. Not unlike any other kid, until it became problematic. A month ago that trait resurfaced unannounced. Halfway into a dinner party, I blanked for twenty minutes. The person next to me asked if I was bored with their company. I made light of myself to ease the tension, but later that night I was baffled.

At another social gathering, seconds after taking my seat, the person I came with was tugging my sleeve, asking if I’d been enjoying a nap. I hadn’t fallen asleep, I’d been awake the whole time. But I couldn’t move, even to raise my glass. I couldn’t make sense of what anyone was saying. I couldn’t respond if I tried. Again I passed it off with humor, but the truth is I was scared.

In the past I’d exhibited the hyperactive aspects of catatonic excitement, a sort of purposeless, chatty agitation. I’ve had bouts of echolalia, where I communicate by mimicking random sounds or other’s speech. Repetitive motions and functionless movements common to stereotypy show up in my mix; not as intensely as a person with autism, but present nonetheless. Now stupor appears to be introducing itself. Time will tell.

More disturbing for me is the effect that delusional thinking has created in my life. After describing two incidents where I was publicly mistreated, my therapist asked me to pause and consider the circumstances I’d recounted. A store clerk followed me throughout the market where I’d shopped since I was a teen. I wasn’t acting suspiciously, but he treated me like a thief. Walking home, a person a block in front of me cried out for help, claiming I was a problem. I had a fresh box of cookies and a rental video, blissfully checked out, living in my own world. I wasn’t aware of anything until I heard the commotion. A city block away. It had to be my fault.

My therapist took the reigns. It’s a sunny summer evening. Other people are on the sidewalk. Why single me out at a distance of three-hundred feet? Shopping is just shopping; clerks restock the shelves. How are these incidents in any way related to me? Broken down like that, my worries made no sense at all. I was forced to consider another option: that my perception was inaccurate and things hadn’t happened that way. My thinking was informed through delusions of reference.

This is a common symptom of schizophrenia, the misinterpretation of reality. Every human mind bases every new response on elements of previous experience. Most minds connect the dots appropriately; not so the schizophrenic. Mine reached back through its history to a time of trauma and humiliation, and filled in the rest at will. Even with my therapist’s help, I felt confused and betrayed. Understanding that my mind was doing what came naturally gave me no relief. My illness was sabotaging the truth.

When it seems impossible to reach out, I have to remember that I could be wrong. I don’t have to do this alone. The constant hum of self-stigma’s undercurrent may orchestrate my interactions with the world, but I need to stay committed to managing my illness. Because knowing that I’m crazy doesn’t make the crazy things stop.

8 responses to “Reading the Signs”

  1. Linda S says:

    Powerful and very well written.
    I admire your resilience and gift for allowing me and others to share your reality.
    It is so hard to accept that our brains cannot always be trusted to provide us with the consensus “reality”.
    Thank you.

    • Henry Boy says:

      Thank you, Linda. I totally agree with you about the consensus reality. I have to learn this piece over and over again. Some days I lose hope and want to give up, but when I remember that people read our blogs and contribute to something bigger by sharing their own stories, I feel a little better, maybe even comforted. The Big Trick is doing it one step at a time. Easier said than done, but better than any alternative. Mental health takes work, and it’s worth it. *Snoopy sigh* …and cheers!

  2. Monica says:

    I look forward to your blog with anticipation for the next!!!! Once again you have spot lighted a concern of mine in caring for/with my son!!! Unorganized thinking and a conversation of it making sense to him but not others comes to mind!!! We talk it through.. We work it out…we engage in seeing the many sides of it…sometimes he comes around to thinking it differently…sometimes he’s set in those thoughts!!! At any rate we do this together and I thank my God every day I’m here for him and he has a place with me in this life!!!! He truly is awe inspiring the strength he exhibits every day he puts his feet on the floor and places one foot in front of the other!!!!
    You have a way of helping it makes sense for me and for the many others who ‘get’ to read your blog!!!!!
    Thank you once again!!! Be blessed!!
    Monica

  3. Henry Boy says:

    Thank you, Monica. It took a lot of courage to write this week’s entry. I am having a very difficult time breaking through the wall that is anosognosia, but my therapist is steadfast in helping me “see” what reality is to you all. My version is all mine, apparently, but as one of the world’s 1% with schizophrenia, I guess I’m not alone. Sounds like you and your son give it good go, and that’s a team effort I can get behind! A couple of strong people you both are. Kudos! Keep at it! 🙂

  4. Phil K says:

    Your bravery in confronting the problem directly and shring your hopes and fears with others is admirable.

  5. Henry Boy says:

    Thank you, Phil.

  6. Carol S says:

    Thank you for your candor. My family member, a minor, is having this exact same situation. I learned more about the subject than anything else I’ve read! I cannot wait to show him, so he will not feel so alone.

  7. Henry Boy says:

    Thank you, Carol. I believe that being honest and open in our blogs for BC2M is what the contributors living with mental illnesses have to share in common. Putting the truth of our experiences up front is what makes our community stronger.

    I’m not a psychiatric professional, but there are some here who are, and they have stories to share as well. There are also sources like NAMI available for more information; there might be a local office near you.

    I hope that your family can find the assistance that best benefits the manageability of your minor’s illness. A good relationship with a trusted therapist and doctor is a great place to start; finding the right medication(s) takes time. The loneliness piece takes a lot of patience from the helping side because, in my experience, it’s challenging to find consistent footing when one’s disorder tells them otherwise. Bless you for being strong.

    Please consider sending your own story in to BC2M so that other families dealing with mental illness can benefit from your experience. It’s encouraging to me when I see family members being so supportive. We help one another, and that’s help for the future. 🙂

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