The price of emotion.
I think your magazine is a good idea--It would be nice to have my head heard! I'm sure head injury people can tell about a song we heard, or the name of our dog. Write a poem, draw a picture, or cook.
Does anyone have a really good recipe for vegetarian spaghetti?
We could show the "other side" (family, physicians, etc.) that, Hey! Look at that! Brian injury survivors can think!
Show the "other side" that we can think? No, I believe she means we should show them our thinking is as harmless as puppies and songs and vegetarian recipes.
The "other side" puts a high price on our emotions. That price tag goes on during rehab and if we don't watch out it never comes off.
People who know about head injury know that survivors are some wacky kind of bombs. Watch out! They could go off!
People know we're so-o emotional, so-o-o angry, so-o-o depressed. People know a lot of scary things about us. Exactly how do they come by this knowledge? I've been wondering.
Today's mail brought the shock of an answer. These are reports from rehab on the brain-injured survivors of a car wreck. The people who wrote these reports are rehab professionals.
The survivors is me.
I lived in their facility last year, awoke from a coma as I was being moved there. Reading the reports, and remembering the incidents they refer to, the high price of emotion becomes all too clear.
I experienced my first weeks back alive as a glorious reawakening to the miracles of everyday life. The loud gurgles of crow babies in a tree over-head as their mama fed them, shadows of leaves chasing each other over brick walls in moonlight, the taste of cold water, a fellow human being with a strong pulse flickering at his temple. Glorious, all. I was alive!
Before the accident I'd kept myself too distracted to enjoy the bright, noisy stream of ordinary life. Now life was more surprising, more immediate, more saturated with color and sound and movement. Glorious.
Meanwhile, the professionals in this budding new science wrote reports. Everything I said and did proved to them how sick in the head I was.
A fellow survivor hugged me back to life.
The official reports describe our lifegiving hugs as "hypersexuality."
Another survivor said something funny. I laughed for the first time since my coma. Laughter felt so good that I didn't want it to stop, ever. I let it ripple through me.
The official reports describe that joyous laughter as "emotional lability."
One day while I stood in line for meds, I realized that my life had changed forever, that I might never have my freedom or a life to call my own again. One silent tear rolled down my cheek. Another welled in my eye. Staff hustled me off to isolation.
Reports of that incident describe me as "profoundly depressed."
Every day I asked for a toothbrush, shampoo, soap. Staff said I didn't have money to purchase those items. I brushed my teeth with my fingers, washed my hair with water. The reports call me "unkempt."
I'd been a writer for 23 years. Every day I asked for a pen and a notebook. The professionals asked me why I wanted such things; after all, I'd never be a writer again. I was stunned. "But writing is my life," I choked. According to the reports, I was "subject to mood swings."
Staff told me it would be part of my "normalization" to start wearing brassiers. I hadn't worn one since I was 15, didn't intend to, and said no thanks. Staff insisted. I told her that if she made me wear a bra I'd cut it in tiny pieces and flush it away.
Reports describe that cranky but quiet interchange as "threats of violent behavior." Called me "abusive."
Every day I asked, did I have the right to go home? Staff wrote up my requests "preservation" and denied them. Every day I asked to see a medical doctor and learn my prognosis. Requests denied.
The reports say I left the facility "against medical advice." Medical advice? The reports say I saw doctors regularly.
If the person described in these reports were a relative of mine, I wouldn't want her in my house. Hypersexual? Violent? Unkempt? Abusive? Hey, keep her!
Indeed, that's what my faraway family and my business partners must have thought when they read the reports.
My family, my business, go on without new now. These are the prices of emotion.
Jamie's family, too, was scared to bring him home. The reports said he couldn't be left alone for 5 minutes, that he was a danger to himself and others. His family sat through 2 years of bad reports before they risked moving him to a facility closer to home. But the closer facility wouldn't admit him once they read the reports.
Jamie's brave family took him into their own home, preparing for the worst.
These days when his mama or his sister calls here, they bubble over with joy. "We left him home alone for 3 hours. He was fine.
"He's out of his wheelchair and using a walker--next stop, canes!"
"Jamie just caught a bus to school!"
Yesterday, his mom said it all: "Home is the rehab he should have had 2 years ago."
That facility charged Jamie and me $649 a day, each. Not for therapy but for reports. Reports that labeled us as dangerous. We lost the trust of the people we love. That's a high price to pay for human emotion.
People still in rehab lare paying with their freedom. Graduates are paying with daily proof they're nice, nice, nice--endlessly, perfectly, tediously nice. Showing "the others" that: Hey! Survivors can think!
Jamie and I would rather spend our time being exactly who we are.
We're human beings. We don't have to prove anything more than that.
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|Title Annotation:||letter from a brain injury survivor|
|Date:||Jun 22, 1993|
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