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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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.

 

 

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Being Chronically Ill Means Being Ill Forever

Days spin into nights and into days again. Summer dragging on and on. A hot beast by August every year, a threatening season despite its spring relation. By the end of summer, the ground is cracked and dry like the heels of my mother and her mother’s mother’s dry pale skin. Even the birds are tired by the end of August and all the people are angry and hot. But then the days get cooler and the fist of fall hits me on the chest, breaking me open at my breastbone to reinstill my winter bone ache. The blow forcing my lungs to expel very last breath of summer air. The leaves fall from the trees until they are thin skeletons, standing like a relic of another year gone by. Then it’s winter and the tight-lipped holiday season passes by. The ice moves in and we in Maine are buried by seasonal Nor’Easters until we are up to our throats in snow. My skin grows cold and my pale sinew is stretched over the bones of early nights. Wintertime depression moves on me like a ghost.

And before I knew it another year in sickness passes me by.

I think back on it. All my exhaling between my doctor’s appointments. I offer up my white arms for blood tests and I’m poked, prodded and rearranged until I feel unlike myself. Grilled with the same monotonous questions again and again. How are the voices? The pain? The sadness? Do you still hurt all the time? Have your migraines changed? Are you still sleeping too much? Eating too much? How’s your lower back? Do those terrible cluster headaches still wake you in the early morning, covered with sweat? Is your pulse still tachycardic? And that wakes you too when it races at night? How are the hallucinations? Are they still trying to read your mind?

The answers grow in the back the of my throat and are forced up from my stomach, rattling around my mouth like bitter candy in a plastic bag, “I’m fine,” I say and make my next appointments.

Then six months of winter lapses.

Then summer comes again.

Then fall, winter, and spring.

Being chronically ill means being ill forever.

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