My “Nameless” Illness

I remember autumn upon autumn upon autumn that consisted in a dread of winter. Knowing my illnesses got worse as the days became as dark as they were quiet. Snow falling softly and coating the state in knee-deep sugar snow. It was these months (November-May) that I was the sickest. In one winter, at the height of my most ill, I was hospitalized three separate times, for a few weeks at a go. So it was, for this reason, I spent autumn, despite it’s what should have been, distracting beauty, dreading winter. Then spring would come and everything would melt. Snow turning to water and water to mud. Then summer, hot hot hot. Three months long in Maine. I often spent it lying naked in the river, my back pressed up against the rock bed in shallow water. The coolness of fresh water moving all around me. With my ears below the surface of the water, the world would grow muffled, but I craved the cotton ball silence. It seemed that even my voices dissipated in the water. Perhaps they were afraid of it, as most villains are.

June, July, and August are momentary. But this year, I am in recovery. Though it seems wrong to me. When you get diagnosed with something as life changing as Schizoaffective Disorder, you don’t expect to get better. In fact, very often, you’re told that you won’t. As another autumn begins. Another year passes when the only psych hospitalizations I have had to endure are in my nightmares. The weather grows cool and scattered amber and orange leaves are seen among the green. The apples on our apple trees are red now and the days to the first frost grow near. It feels wrong someone, to not dread winter. To function now. Guilt and shame frequent bedfellows. Depression growing smaller and smaller. “I get it now, you were always seductive. I see now how you made me feel misunderstood. An invisible number. A tiger behind a wall of glass.  I have felt like this for too long. So now, when I am happy, I miss the amenity that depression brings. I miss the song, that sadness sings.”

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I often wonder if it were the voices the caused the seizures. Too much noise like so many sticky bumblebees on the inside of my head. The seizures a reaction to the overwhelming. Much related to catatonia. And the pain, which still stays even to this day, a hallmark of the constant stress I felt. A mark of trauma left like a brand from hot metal forced onto my skin.  And the paralysis? I still don’t understand it. I remember how it felt though, I’ll never forget. Waking up one morning to find my lower body weighed down by an invisible hand. My frame hot like boiling sap. It started with a cane and progressively I needed a wheelchair. My legs completely paralyzed, even part of my left hip no longer working. At my doctor’s visits, I’d have seizures, at school I had seizures, in the shower, with friends, by myself. And for half of that year, I dragged myself around (or had others do it). Rendered immobile by a sickness nobody understood. The hallucinations stayed too, just as they had for the two previous years. The delusions grew worse. The voices constant and aggravating.

I had an illness with no name. And to this nameless illness, I lost four good years of my life. Years I will never get back, lives I will never live, doors which, once open, were closed to me because of this.

And now, in recovery, I feel guilty to be getting better. I feel as if I don’t deserve to be happy and healthy. I feel lost of course. Confused. Distant. The pull of sickness like a dead weight in my gut. Voices, still within me, urging me back into their company. Reminding me that I am losing the sick part of myself which defined me for so so long.

I’m changing and it’s scary.

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But what else is there to do with this type of pain?

Give in?

Give up?

Certainly not.

Not while those with mental illnesses are still mistreated. Not while we are still killed by police who aren’t trained to handle situations of mental health crises. Not while more of us are in prisons receiving treatment than in hospitals. Not while treatment is so inaccessible. Not while mental illnesses are so misunderstood, and not while there is so much misinformation.

Not while we can’t talk about it.

And not while we can talk about it but don’t know what we’re talking about.