My Disability Experience

I went to public schools, played sports and instruments, acted, etc.�"same as any kid. I was always very boisterous and extreme. Even as an infant I would go from intense crying to hysterical laughter in a matter of seconds. Growing up, I had non-stop energy in everything I did, whether it was talking, throwing a temper tantrum, playing tag, whatever.

 

I was diagnosed with ADD at age six, as well as OCD a couple years later. Memories of ADD have naturally faded from my consciousness, but my mom reminds me every now and then of just how hard it was. She didn’t want to put me on Ritalin so early, but it was the only choice, along with routine visits to psychologists and psychiatrists.

 

I got in trouble at school for cutting up and talking out of turn. The one saving grace was that I was nice, polite kid and my intentions weren’t bad. Even out of school, I never did anything particularly heinous, just stupid things.  But I remember, at home, my parents having to pin me against the wall and restrain me. My explosive temper then was like some kind of demonic possession. I had no control over my behavior. That feeling of no control has resonated throughout most of my life thus far. Because of it, I focused on what I could control. I always loved word games. I spoke in full sentences by my first birthday. I could control language and it was mine.

 

I’ve forgotten ADD, but the scars of OCD at its worst, however, will always remain fresh. The best way I can describe OCD is as a strong addiction. Like an addict craves a substance, someone with OCD will experience obsessions; unwanted, often horrifying, obtrusive thoughts. Obsessions can make you feel anxious, hopeless and disdainful or immoral. Just like an addict uses substances to fulfill that craving, someone with OCD carries out compulsive behaviors to satisfy and rid themselves of obsessions. And the dynamic goes in a cycle, intensifying each time. I had no control over my thoughts.

 

It was at its worst for me from the ages of 9-13. The obsession was germs; particularly ones that could make me vomit. I washed my hands to the point where they would crack and bleed in the winter. I wore three outfits a day, and a phrase as simple as, “grow up,” became “throw up,” to my ears. It distracted me in everything I did. Worst of all, I knew that it made no sense to worry about that. What’s the worst that could happen? And it wasn’t only germs, terrorism and natural disasters. Combined with ADD, it made me very impulsive and daring. I remember one time, on a train platform, I was having awful mental images of being hit by a train. Naturally, you’d run. But something in me told me to jump in front of the moving train, that way I’d conquer my fears.

 

I was acting out in every way and was nearly institutionalized. My parents didn’t want to do it, but I was very difficult to live with and I felt guilty. When I wasn’t frantic or blowing up at someone, I worried that my behavior might affect my parents’ health. I tried to hang myself at 12, but snapped the rope before I went unconscious. Looking back on it, I sometimes consider it four years I wasted, but I know it was out of my control. Somebody without OCD might not understand it. Anyone else can “shut out” horrible thoughts, but it truly feels like you’re in hell with OCD. It is not easy to grasp unless you’ve had it, which many people incorrectly think they do. The panic attacks, the unwanted thoughts and images, and the toll it takes one loved ones are all very real.

 

At 13, my OCD began tapering off. I’d found a medication that worked. Consequently, I began walking a bit clumsily and off-balance. I was diagnosed with a rare, degenerative, neurobiological disorder.  All I knew from the beginning was that I might end up needing a wheelchair someday. I said that would never happen, and if it did, I would kill myself. I was pretty self-conscious about it through high school, and people joked behind my back. I remember being so afraid of what other kids said behind my back, and when they said it to my face�"they might has well have punched me in the nuts. I had a one-on-one aide, not for physical reasons, but to help me stay on-task and not goof off.  

 

 It came to the point where I couldn’t run well anymore, and I played hockey for the last time my freshman year of college. I spent my first three semesters walking. I was freshman class president, and I could still get into houses for parties, walked to classes and everything. In spring of my sophomore year, I had vertigo from an ear infection and needed a walker for balance, but in reality, I should have been using one long before that. I couldn’t walk around town with my friends, but I was getting too old for that, anyway. I would act as though I was fine and great to my friends, family, and whatever girl that was willing to bother with me for a few weeks. i had no control over my condition.

 

                I didn’t leave my dorm much for the first half of 2005, but to go to classes. I spent most of my waking hours in isolation reading and researching everything in general. I wrote a lot as well. But in turn, I shut out everyone, completely withdrew, and became pretty self-destructive. I drank on occasion throughout high school, but alcohol, and soon drugs, became secret escapes of mine. I even wrote a letter, stole a friend’s gun and stared at it for 30 minutes on the Newburgh-Beacon bridge before I came to my senses. I was alive, but I didn’t think anyone would ever love me; that they would all pity and look down upon me.

 

My last two years of college were rocky. But I grew as a person and somehow pulled it off with a double major and a 3.4 GPA.  I learned a lot more in college than linear growth formulas and the theory of utilty; I learned how to pick my busted a*s up off the floor over and over, and to keep going through the day. If not for my twisted sense of humor, I may not have stood that test.  Things wound up ok, but to this day, I still think a part of me died on that bridge�"a young, innocent part that became overwhelmed by reality. But I guess we all bury that part of us in some fashion or another. All-in-all, the good weighs out the bad. I had a lot of fun and got away with some crazy things.

 

                After graduating in ’07, I worked as a systems advocate at a non-profit center for independent living. My job was to advocate for disability services in my county, as well as to support others in advocating for themselves. Naturally, I found a reason for my existence; to help others, and by helping others, I was also helping myself. Although I was laid off when new management took over, that job was one of my most rewarding life experiences.

 

                As of now, I’m out of work and have been for 10 months. It sucks, but because I never really took time off, I like to consider this “me-time.” I’ve been down and out, I helped others, and now I want to hang out for a bit. It’s still my duty to teach folks what disability is and what it isn’t. It is a characteristic; a trait unique unto the individual at hand�"whether physical or intangible. The individual and their ABILITIES are far more important than their DISABILITIES. Legally, a disability is “a physical or mental condition that impairs one or more functions of daily living.” Disability is not something to be stereotyped or looked down upon. Stigma attached to disability implies laziness, stupidity, sickness, weakness, neediness, impotence, poor hygiene, etc. Some people swear it’s “mind over matter”, and that I could walk if I tried. Well, I’m not too dumb, I do everything on my own, haven’t had a cough in over a year. I shower regularly, I’m not deaf or blind and I can get it up… ask yo mama ;) I know a thing or two about the human body, and if there is one guy who could accomplish anything simply on will, it’s me. I’m humble enough to realize there are things I can’t control. No one has any control… we’re all at the mercy of laws of gravity.      

 

I will always have scars from whatever was going on in my head. It doesn’t cause major difficulty for me anymore, but the anxiety attacks and negative thoughts still come.  In some ways, the physical disability was a blessing in disguise; it’s given me real things to worry about and I have to find a way around them. In nature, most living things find a way to function even with the most severe impediments. I can’t walk. So what? Could be worse.

 

 I’ve met incredible people and I’ve done more than I ever did before the wheelchair. Everybody has negative circumstances beyond their control. The only real freedom we have is in how we react to those circumstances. I’m thinking that’s all there is to life.