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When have you dealt with the reality of how people perceive you
due to your disability?
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Name: Jim Lyons
Email: lyonsjam@hotmail.com
Date: 22 Jul 2001
Time: 09:22:54
First they told me that I was doing it to hurt the family. So, of course, I hid it. I was six. Next the psychologist told them how anger had turned into a dreadful psychosomatic illness. I was 10. Finally, I was saved by the bone doctor who told us all, "This chap isn't crazy. Take him to the muscle doctor," and, at 14, they called it Myotonia.
And what a relief. In the nick of time. "Enjoy the good, forget the bad, and now you move on," they told me. "Don't cast guilt, and don't let the bad drag you down." The Bad? Had I forgotten the bad, or was I told not to talk about it? Yes, "it's better you be quiet about this, all of this, son. It's in uuhh, your best interest."
I have little interest and even less memory for telling what transpired after that. But those first three -- the devious Mafioso son, the cuckoo bird, and the child I was before six -- all wanted a word in, or should I say get a word out. They were a confusing bunch and always told me to strike back, but the decision to shut it all down seemed appropriate. Keeping those perceptions quiet and separate is too much while trying to maintain a memory.
Fortunately, it was summer and I needed a job. I had just turned 19. My friend delivered pizzas and asked if I was interested. No way, I thought. Of course, I made the mistake of telling dad, and he agreed that it was a good idea.
Fourteen bucks an hour wasn't a bad idea, but, after two years, and dreading every day, something had to change. You see, every delivery was a face at a door watching me. Every step I had to walk up was an opportunity to blow the whole facade wide open. Mr. Quiet would lose his tongue, and Mr. Mafioso would lose his cool, if they saw me limp up those steps. Besides, I was getting paid to do this. The company's best interest was at stake. Who was I to walk the way I saw best?
Twenty is getting old. Too old to be playing stupid games and pleasing stupid people. So, at a five-way intersection, the fifth day of work, days before my birthday, I made a vow to myself "that my next step would be false." The next step I took out of the car, I would purposely not hide. I would purposely not do what I had done so many times before. The only trick was figuring out how.
It would take too long to explain the constant ordeal one has to partake to maintain a certain perception. I'm sure you know. It might take just as long to explain how to hide Myotonia and how masking it robs all energy and life from you. None the less, few people knew I had it; they just thought I was crazy. And be it my age, or destiny, I was tired of acting crazy and pissed I had no choice.
So at the next house following the intersection I did the only thing I knew how. I carefully watched the blinds for movement, and then I slowly took one leg out of the car at a time. I rose and stood there, unable to move. Fear racked my mind. Slowly and with as much rebellious motivation as could be mustered, I did everything in my power to move for no one but myself.
That day, luckily, is who I am now five years stronger. And, since then, few have kept me silent or trapped in their ideals. Who knows where strength comes from, but, once tasting the freedom of my own perception, I knew I would never swallow another's.
That next step is waiting to be discovered and hopefully it is as fruitful as the last. I am now receiving my MFA in film, and, if you asked me, I couldn't tell you how I got here.
Copyright © 2001 Jim Lyons. All rights reserved.
Last changed: October 20, 2003
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