To Be Included

By Henry Boy Jenkins

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

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

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

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

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

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

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

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

5 responses to “To Be Included”

  1. Monica says:

    I especially needed to read this one this week being mom to my son as well as his care giver…this explains a lot of what I already know but also what I need to be reminded of more often than not!!!! Thank you yet again for tackling the subjects that not only you need to write about but that we need to read!!!
    As always, ‘your words = our gift’
    Thank you, every single time!!!!!
    Take care HBJ…always a prayer for you!

    • Henry Boy says:

      Thank you, Monica. I never know how the subjects I pick are going to be received…I just write from the heart and trust that someone out there might connect with the words. That you do makes me very happy. I wish all the best for you and your son. Bless you both.

  2. smileandrelax says:

    Hi HBJ. I’ve had symptoms the past three weeks and it feels like an eternity.

    Today I kind of connected with the bottom within my mind, at least the emotional bottom. A feeling of wretchedness, and the accompanying knowledge that several people whose opinion of me matters in material ways realistically appraise me as objectively possessing that state of being. There are folks in the world who have money, status, and privilege, the elite I’m talking about; to those people a person with mental illness must be someone to be pitied for what s/he lacks in the way of health and opportunities.

    After seeing myself through their lens and having a really good sob about it, I took a look around my apartment at what they have blessed me with; beautiful furniture, some handed down, some really cool kitchen gadgets like an ice cream maker and a pizza stone, and of course, their son whom I persistently rely upon and who does the best he can to help me stay strong.

    I haven’t put the pieces together yet enough to expound clearly on avolition. But I’ve put enough together to know a poverty of will is linked strongly to depression, and depression is a malfunction of grief, sort of like what happens to a machine when its gears get stuck. The brain is complex and so are our personal lives but I’m pretty sure that as the grief is completed the will frees itself up.

    All the best,

    s&r

    • Henry Boy says:

      Hi, s&r. So sorry to hear that you’re struggling with symptoms. I hope you get through them with a minimum of hassle. In any case, thanks for taking the time to write in. I know when I’m struggling even the simplest things can seem insurmountable.

      Reaching a bottom always gives me hope on my way back up. Not so much when I’m down there, but definitely when I return. You seem to have managed to grok a peek at the special things in your life, and that accounts for something. It sounds like you have some good folks in your corner, and that’s always a plus.

      Stay strong. You’re worth it.

  3. smileandrelax says:

    Henry, I’d rather be taking it easy than staying strong. Strong is the easy part sometimes, as strength can push our finer and more delicate feelings out of the way where they are harder to notice. Taking it easy affords more freedom to explore those subtle nuances of our lives that, if ignored, sometimes leads to terrible tragedy.

    This is actually a lesson that has been taught to me by my friend’s parents, and not one I have enjoyed learning.

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