Sunday, January 30, 2005

Chronic Motor Tic Disorder: Life's Little Lessons

Here is an interesting thing about people: They seem to relate more with physical handicaps than neurological ones.

I broke my pinky toe in the last week of 2004. I had a showdown between me and the corner of the wall. Obviously, the wall won. It’s not that I had a bone to pick with the wall. It was just in the way and I wasn’t paying too much attention to that fact. So as a result I hobbled about for a few weeks babying my toe. After a week the startling colors faded away, after two I didn’t have to baby it so much, and now everything is back to normal except that I have an aversion to corners. Breaking a pinky toe is really an insignificant matter. Mildly inconvenient, perhaps painful at first, but quite quickly it will mend and we forget about it. I bring this up because I noticed something about people in that last week of 2004 that I wanted to explore a bit.

When I went to a New Year’s Eve party and informed my friends I couldn’t participate in the Dance Dance Revolution contest because I broke a toe, nobody said, “Jeez! What a whiner!” “Be a man, for cryin’ out loud.” “What a lame excuse”. Well, actually, somebody did say that last one, but they were kidding. For the most part, though, there were expressions of mild concern and perfect understanding I wouldn’t be hopping about rhythmically for a while. My friends are not unique. Many people can relate to or sympathize with a broken bone, even a bone as unimportant as my pinky toe. But empathy or understanding for neurological problems is hard to come by. With my toe, it was “Man, bummer about your toe. Pass the chips.” But with my tic disorder it is more like “What is WRONG with you?” as if I’m somehow slacking off when I stay home because I can’t walk in a straight line. Mind you, my friends are much more understanding than even members of my own local church, but in the end I've received more understanding about my stupid toe than I have with my lifelong disabilities. That seemed odd to me and worth understanding better.

The first question to ask is "What IS wrong with me?" Well, aside from occasional bouts of megalomania and halitosis (a terrible combination, I assure you), when I was taking Desoxyn to treat ADD and Zoloft to treat depression about 12 years ago the two combined into one whammy of a treatment — permanently fried my neurons. Turns out that a small minority of users exacerbate, and in my case develop, Tourette’s Syndrome when using Desoxyn. Zoloft has been proven to cause tics as well. Gotta love psycho-tropic medications. I can just see the board room now. “What? Only 5 out of 100 people twitch freakishly when on this stuff? I love those odds! Bottle that puppy!” Thank you FDA. Side effects are simply one of the largest downsides to our modern world of miracle medicine. I didn't develop full blown Tourette's (doctors just call it Chronic Motor Tic Disorder), but now when I’m tired or anxious I tic involuntarily. My arms flail about. My legs move on their own accord. My head turns in the opposite direction of where I'd like to look. You get the picture.

For the most part I keep my disabilities to myself, but occasionally my problems affect other people I interact with. Like when I suddenly can't go somewhere as promised, or when I can't make an early meeting, or when I smack people out of the blue. Well, sometimes I wish I could smack somebody (annoying salesmen, bill collectors, clients, etc.) but I usually just settle for smacking my friend, Nathan. I solemnly promise I have never actually hit anyone while my arms act on their own volition. The fact is I go into hiding when it starts happening, so most people don't even know I have this problem. At any rate, sometimes explanations are in order. And that is where the problem lies. When trying to convey to people what it’s like to have chronic motor tic disorder I bump into the oddest resistance, generally speaking, of course. People blow me off, change the subject, or downplay my experience. They look at me as if I’m making it up or talk to me in disapproving tones. Or give me advice. I love that. Nobody gives you advice about broken toes. What do you say? Don’t kick the wall next time? But with ticking, the message is, “We all have problems. Get over yours.” You wouldn't say something like that to a blind guy, but then we all understand blindness, don't we? When I told people I broke my pinky toe, people had empathy. Nobody wept for me and I didn't expect them to, but when I tell people about my disabilities, which are arguably far more inconvenient than any throbbing toe, people seem to have antipathy. This used to upset me, but since I broke my toe this simply puzzles me. So I suppose the second question is "Why is this so?"

I think the answer lies in human perception. Everyone may not have broken a toe in their lifetime, but they can understand what it might mean to do so. They can understand pain. They can see you limp, or at least walk gingerly. Unless you have a shriveled old raisin instead of a heart, you can't help but feel for your fellow man in pain. People on buses still give up seats for the elderly or infirm, they still offer words of comfort for those less physically fortunate than them, and frown disapprovingly at the few knuckleheads whose hearts resemble the previously mentioned fruit. But neurological problems usually lie far outside their experience. These problems lie too closely to the fringe of the insane. This makes people uncomfortable. In addition, I believe that people cannot be told to be empathetic. They usually need to see the malady to employ their empathy in full bearing. In my case, telling people about my problems engages their cynicism, not their empathy, because on the surface I am perfectly normal. They may even feel I am a bright, intelligent, fantastically charming, amazing, charismatic, humbly handsome, all together sort of guy whose complaining about imaginary problems. Perhaps I sound like I'm whining to them. Perhaps I don't use the right words to communicate with. Or maybe it's the halitosis? At any rate, every time I tic I hightail it back home and take a nap. I don't let people see it. If you have similar problems, like depression, epilepsy, or anger issues like David Banner, you'll find the same lack of tolerance and understanding in your fellow man. Especially if your problem is halitosis. Nobody's going to be understanding about that.

What can we do about it? Not much, really. People aren't any different than you or I. I have a difficult time relating to accountants, football fans, and reality show contestants. I'm sure there are people you can't relate with either. When it comes to disabilities, people simply aren't going to relate to your neurological problem unless they have experience with it. I suppose the solution for me is to let myself tic in public more often. You know, give them all a good show. However, there are downsides to that approach. One, I have dignity. Stop laughing. Two, I wouldn't get the results I wanted. If I start jerking about in public I would get pity, fear, or revulsion, but not understanding. Most people don't want to feel like a freak, so they strive to be accepted and understood instead. That's why in the past I have brought the subject up with people. Unfortunately, only friends, family, and medical professionals have ever given me that understanding. I don't see that changing anytime soon. What I find fascinating is that I'm not upset about it anymore. I find it humorous instead. My broken pinky toe has taught me a lesson. I was looking for empathy in people before, but that was too much to ask. Instead, understanding should be the goal. Maybe next time I find myself trying to educate somebody about my disabilities I will have better success. Especially if I wrap a bandage around my head and talk like J. P. Gumby!
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