Would You Rather ‘Psychosis Spectrum Disorder?’

“Today, having a diagnosis of schizophrenia is associated with a life-expectancy reduction of nearly two decades. By some criteria, only one in seven people recover. Despite heralded advances in treatments, staggeringly, the proportion of people who recover hasn’t increased over time. Something is profoundly wrong.

Part of the problem turns out to be the concept of schizophrenia itself.

Arguments that schizophrenia is a distinct disease have been “fatally undermined”. Just as we now have the concept of autism spectrum disorder, psychosis (typically characterised by distressing hallucinations, delusions, and confused thoughts) is also argued to exist along a continuum and in degrees. Schizophrenia is the severe end of a spectrum or continuum of experiences.”

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Skeleton Bones, Poorly Oiled

The only thing that wakes me is a cold wind intruding on the warm, late night air of my hospital room. The change in temperature is noticeable, like oil in water. A bright light from the hall. A nurse, curly haired and round, pokes her head in, makes a note on a clipboard, and then vanishes behind a closed door again.

Fifteen-minute wellness checks grow tedious.

I shut my eyes against the darkness and roll onto my other side. Windows look out onto a dusty parking lot. Empty of the many cars the daylight would bring. In the morning the hospital would be full of doctors and nurses. People would go and come. But I would remain for, at least, a week. That’s what my doctor had told me, at least a week.

Tomorrow would bring art therapy group and CBT. I’d meet with a doctor. Be given medications. And work with a caseworker about a discharge plan. When I’d be leaving, where I’d be going, what my new medication regime would look like.

I sighed opening and closing my eyes again. I didn’t want to stay for another week. The monotony of the place ironically maddening. I threw my arm over my eyes, the crook of my elbow settling across my forehead. I bit at my lips. And then, as I finally felt sleep close by, another column of light slunk into my room and the same nurse looked in.

“Please!” I groaned, “Leave me alone!”

“Just doing my job dear.”

Darkness again.

In the hall, I heard two nurses in an exchange. A midnight but ultimately momentary admittance would arrive. They were not to remove his restraints. I thought back to my own admittance. Cowering beneath a tan Egyptian cotton blanket. Arms restrained to the stretcher which I was brought in on. Legs left free and pulled inward.

I begged for sleep, the nurses chattering on outside my door. The Zolpidem which they had given me to help me sleep had since worn off.

“I guess this guy is gonna be committed, we just have to hold him for the night.”

With my eyes shut I wrinkled my brow. Committed…?

“He killed his parents,” and I felt my mouth run dry, “said something about them being the devil’s work.”

I rolled back over, away from the door.

“Found him covered in his parent’s blood.”

A third voice now, “All the people that come through here are fucking psychos. If you ask me they should all be committed.”

My pulse, already high, threatened to break my ribs. I felt a hot bed of tears beginning to form at the edge of my eyes. I wasn’t in the right place to hear any of this. I was the youngest crazy kid on the adult psychiatric ward. Confused, distraught, suicidal, irrational, and impulsive. I thought, in that moment, that maybe I was destined to become the guy who would murder my parents. Maybe some day I’d show up covered in the blood of someone I loved. Maybe it was only a matter of time before I went crazy enough. In a silent rage, I brought the pillow from above my head over my face and screamed into. Emptying my lungs and then my throat, leaving my respiratory tract scratched and raw. I couldn’t have known I had five more of these hospitalizations ahead of me. That I’d almost die. That I was Schizoaffective. I couldn’t have known all the sad music views I’d see from my hospital windows, all the sad music scenes I’d see, all the sad music medicine I’d take before I found the one that worked…

Just as I went in for a second scream there was a commotion in the hall. The sound of a stretcher, a sound I’d never forget, rattling down the hall. Its thin wheels sounded like skeleton bones, poorly oiled, on the clean hospital lelonium. Click, click, squeak.

My next fifteen-minute wellness check came just as the stretcher made it’s way past my door. And in the hall, I saw a man pass by. His hands, though tightly bound, were clean hands. Pale Maine hands.  His face empty, eyes empty. A lost look plastered to him like a missing person’s ad. And as the entire stretcher passed my door I didn’t see a single drop of blood.

 

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.

Writer’s Block

I can’t think of a more doggish feeling than needing to write but being unable to. Pacing, canine. Rabid. An unyielding reminder pounding at the back of my head: write, write, write. But no words present. Only a rushing of blood, muscles tensing and untensing, a too fast heartbeat. Only humanity forms at the tips of my fingers but not a single letter. Nothing to show for my sentience. The one thing I was born to do, is something beyond my control. Words coming and going as they please. Presenting themselves only when they feel it’s best. I don’t get to decide on those words. When they come they are almost always unexpected. At midnight, at work, in the shower covered water. Forming from brain fog into firmness. Always inconvenient. Always when no pen is near. Arriving in pieces which I am later able to stitch together.

The rest of the time I listen to the voices, making up stories and lies until they arrive at some truth.

This is my bane as a Schizophrenic writer. My essays born of illness, while important to me, are never my decision to write. Perhaps I am more a vessel than a captain. After all, Schizoaffective Disorder is like sailing your ship through the roughest waters, without ever knowing what the water really is.   

 

Depression is like Blindness

TW FOR MENTIONS OF SUICIDE

 

Maybe I wanted to die. Wanted to die for real. Collapsed on the dorm room floor. The jar of pills rolling from the edge of my desk and scattering across the floor like candy. In what would’ve been my last moments, regret would’ve filled my body like the pills filled my stomach. Like cement. In those last moments, I would’ve had the will to live but not the strength to pick up the phone and dial 9-1-1.

Luckily, I had both. Coming back from the edge and learning to see again.

That’s how depression works. It’s much like blindness. For it’s not darkness you feel even in your darkest moments, it’s nothingness. As huge and heavy as the entire ocean in your chest, and as silent and empty as a room with only a whirring fan at its center.

It’s soft and quiet and filling and hypothesizing. It’s exhausting like nothing else you’ve ever felt. And before you know it it’s got you and all you want to do is close your eyes and die.

And eventually, you might try. And it will be up to you in that moment to decide whether you really want it. And you will either pick up the phone and call for help or you won’t. That will be up to you, and I hope you make the choice. It will either be the last decision you make or the first one on the path of change. That’s your call, quite literally.

Don’t give up if you can help it. Because somewhere, someone or something is going to teach you how to swim in that ocean that fills your body. And if you want it, you’re going to get better.

Will My Illnesses Ceasefire?

I did a stupid thing and I got a part time job. A basic 9-5 type of job. A cashier/bagger combination down at a local grocery store in the next town over. I haven’t held a job in over two years. Not since the wheelchair, the Schizoaffective Disorder, the seizures, and the chronic pain, and the suicide attempt. It’s only about fifteen hours a week, barely part time.

I did a stupid thing and I got a part time job.

I told my boss I have to take meds three times a day and can’t work past three in the afternoon. Because I still need time to go home and cry at how bad my body hurts. Time to come home and electrocute myself into numbness with my tens unit. Time to choke down too many ibuprofen. Time to spend too long in the shower. Time to do my therapy prescribed stretches. Time to come down off the high of hearing derogatory voices all day. Even after staying faithful to my antipsychotic for almost two years, I still hear voices constantly. A droning noise of voices. A sinister John Carpenter amalgam of sound. Every time I try to do something good for myself the voices are always right there. Always reminding me that I’m going to fail.

Can I even handle a job?

I’d much prefer to stay home and stare out the big bay window at the apple trees. 50/50 it will rain or shine but I can always feel the rain in my head regardless. Psychosis pulling my soft brain apart like sticky cobwebs.

You might ask what it’s like to live with chronic mental and physical illnesses. I’ll let you know what it’s like. It’s like your body and mind are fighting a war against the one thing meant to keep them alive. It feels like you were born to be destroyed.

I did a stupid thing and I got a part time job. Will my illnesses ceasefire? I doubt it. Chronic illness waits for no healing. A ravaging train with no breaks.  It’s an unwelcome guest in a body I didn’t even get a chance to learn to love.