Wonderland

By December 15, 2016Blog

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

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

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

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

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

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

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

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

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

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

11 Comments

  • Carol S. says:

    Beautifully said, Henry ♡ If not for you, I’d still be ‘that person.’ Standing there, nodding, smiling…unsure of what I’m being told. I’m so grateful for you ♡

    • Henry Boy says:

      Thank you, Carol. I’ve come to accept to some degree that cognitive dysfunction is going to always have me standing there, nodding and smiling, but I’m working hard with my therapist to find some place of balance in my life. This is by far the hardest hurdle with schizophrenia, its core. We do what we can to make sense of it all. Stay strong!

  • Cindy says:

    You are inspiring in ways you probably can’t imagine, Henry (or is it Henry Boy?). Thank you for sharing.

    • Henry Boy says:

      Thank you, Cindy, for your encouraging compliment. I write with a desire to help others. Hopefully that comes through. Oh, and Henry or Henry Boy, either way is just fine. 🙂 Thanks again!

  • smileandrelax says:

    Both me and my friend appear to have regained cognitive functioning over time. If it is correct that pharmaceutical products haven’t yielded these specific improvements then it would appear psychotherapy has produced them.

    Personally I’ve begun to wonder if the problems I have with short term memory function aren’t a by product of the memory loss associated with trauma, as it implies that healing traumatic wounds would restore some memory function.

    I’m also acutely, jealously aware that my friend, who on the surface struggles with daily life more than I do, also has far greater insight than me when it comes to long term problem solving. He plays both poker and chess very well. He can perceive, in ways that elude me, many creative possibilities or strategies to reach a goal that are seemingly hidden to others.

    In the past I had some time to reflect on the deficits associated with Asperger’s syndrome. Then as now, I noted that surfeits of various kinds accompanied the deficits. I wonder if those of us who are besieged by the diseases of the mind all reflect this phenomenon.

    In Buddhism – and you will have to attend a place of higher learning for further specifics – there is a proverb that says “the jewel is in the lotus”. Missing to us may be the context of that proverb, since in Asia, it’s commonly known that lotus flowers grow in muddy swamps. All human beings can mine the muddy swamps of their deluded consciousness to possess the jewels within the lotus. But few people like taking a mud bath.

    Similarly, in one of the Psalms written by King David, he says “Fortunate is the one who doesn’t forget You, and the person who struggles in You.” The meaning is that the loftiest forms of illumination are found where the darkness is the greatest.

    There are many valid reasons one must not romanticize suffering. I apologize to any who read this who feel that I am doing so. The fact remains that in experiencing both the worst aspects of mental illness and in braving my own future, I’ve reaped many benefits few other people recognize until they encounter my empathy.

    • Henry Boy says:

      smileandrelax, thank you for your comment. You are right not to romanticize suffering—the media does enough of that—but to shine a light on it in your own inimitable way. In doing my research for the article I found repeated information stating that pharmaceuticals have yet to restore cognitive functioning or implement a cure (as such). Psychotherapy was noted as being more effective. You and I appear to have had similar experiences along these lines.

      My purpose in writing this blog was to illustrate, for the family members and care givers most specifically, in a short comprehensive way, the effects of cognitive dysfunction. I was hoping to give them something to consider when their loved ones show signs other than the standard positive and negative symptoms of schizophrenia. Hopefully, that’s how it comes across.

      I’ve been struggling with cognitive impairment for some time now, and only recently have gotten in-depth with my research into it. As I like to keep my blogs current to my situation, I’m writing in real time. This is where I’m at, so to speak, and I hope it does someone some good to read it. That’s always my hope.

      Take care, and thanks again for your insights. Be well.

      • smileandrelax says:

        I zoned out a bit when first I read the essay, as I often do when presented with technical material unless I’m really searching for answers. I made a mental note to return again with the focused intention to absorb it.

        I’ve no doubt that the cognitive issues you’re writing about contribute to the isolation experienced by those who live with schizophrenia. It is far more than paranoia that causes this situation. It is the fact that persons don’t readily understand what is not easily seen, nor do they readily listen to what is not easily explained. I am personally afflicted by both sides of this phenomenon. I have a condition that has no name and which is very hard to explain to people, and I also find it difficult to learn from others who have mental illness about their own lives.

        What I do is try to detach from my strongest feelings at least enough to realise they will pass like clouds moving across the sky with time, and also, to refrain from acting or speaking without first affording myself time to consider the best way to do so. I’m frequently spontaneous and my responses to your essays are thus most likely not very pointed or of supplemental value. They’re more like ripples.

        Do you like the Grateful Dead?

  • Michael S says:

    Hello Henry. You write beautifully. I feel those feelings from my own POV. I have Bipolar II, and with mania, psychotic features. Since my last episode, it lasted during 4 calendar years, my cognitive abilities are much different. I had to relearn things like using my microwave or remote control. I have short term memory issues. I don’t remember people that aren’t frequently in my daily life. My family is aware, and they are supportive. I use my phone for cues. I just had a Mini Mental Status Test. I had the day of the week wrong, and out of the 3 items I was tasked to memorize, I forgot one in less than 2 minutes. That’s not bad, but I’m having a CT scan of my head after the holidays to rule out organic causes. It may be longterm benzodiazepine use or just the disease process. I don’t know. I relate to some of what you write and have empathy for the rest. I cope fairly well. Best of luck to you and thank you for sharing.

    • Henry Boy says:

      Thank you for writing in, Michael. Those short term memory issues can really pose a host of challenges. It sounds like you have the right attitude toward working them out. I hope your CT scan goes well. Stay strong!

  • Jessie Close says:

    Thanks for another profoundly wise piece, Henry! Your writing soothes me.

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