Tuesday, August 31, 2010

Tic Tap Tou(rette's)

I had a conversation semi-recently, about what kinds of interesting things I could possibly bring to this little blog that others might not. I drew a complete blank. I mean, middle class college-educated twenty-something? Not too un-normal, right?

Ooh yeah, right, also, I have Tourette's Syndrome.

It's mild, so most people don't notice it and so I forget that it's an unusual way to live, with constant numbers and repetitions and convoluted algebra dancing through my head, tingling in my fingertips. I hide it instinctively, keeping twitches to my fingers and tongue, and holding out until I'm alone to do the really weird stuff. That's the thing about (mild) Tourette's; it's controllable to a certain point, but then you've just got to go do something big so you can breathe right again.

I didn't know it was weird, I was weird, until I was almost an adult. I have vague recollections of doctor-hopping and finally learning about "tics," which were explained to me as very different from the tiny black things I always managed to bring in after tromping around the southern Kentucky hillsides. I understood that the compulsions I had to blink hard and often had a name, but I didn't understand that this was something different from other kids. I later learned that I also had a head-jerking tic that terrified my parents, who thought brain cancer. The subsequent doctor-hopping, and stress, only made me worse, until finally the assuaging diagnosis of Tourette's. The doctor told my parents to just leave me alone, and they did, and my outward symptoms all but disappeared.

This happens to a lot of kids with Tourette's as they grow older; I don't know why. I read it somewhere, and lived it, so it must be true.

What I'm left with is a jumble of controllable compulsions to count, to make shapes, to repeat things over and over. They are so intrinsic to my personality at this point that I don't know what I would do without them. It feels terrible when things are off, or I can't get something out of my head in just the right way, but it feels so good when it's right, when it's even. When the world is smooth.

I have good days and bad ones; usually I can step on cracks but sometimes I can't, sometimes labels have to be turned a certain way but usually it doesn't matter. Echolalia, however, is ever-present. I like echolalia. Sounds, and their repetition. It feels great on my tongue, on my lips, on my teeth, in my fingers as I trace letters in the air at my sides. Until, of course, my carpal tunnel acts up or I rub a blister into my tongue.

The disorder affects me now in ways that it never did before; years of repetition have worn paths into my muscles, my bones, my nerves, etched worry lines into my psyche. I am who I am in large part because of this disorder, it gives me the freedom to be impulsive because I'm already compulsive. But sometimes, when my wrists and tendons are sore from fiercely scratching words into the air and I can't unlock my jaw because my teeth aren't straight, I do really wish this burden was not mine to bear.

I love my Tourette's because it feels so good when I get things right; I hate my Tourette's because that is what makes the world feel off kilter in the first place.

4 comments:

Cody G. said...

"to repeat things over and over". Perhaps this is why I've been introduced to each of your friends at least six times.

I don't mean to poke fun. That's the first thing I thought of though.

regishratz said...

Thanks for your story. If you are wondering what you could add to what is already out there dealing with this topic, well, you did. As a father of a son with Tourette's tics, I am always happy to read about people who are doing well inspite of .... Also, I am always looking for a "solution", and your story made me think I should just let this thing be.
Keep writing. Someone out there can benefit from it.
Thanks,
Mitchell

B.Graham said...

@Cody - haha it's actually possible I compulsively introduce people, but more likely I just have terrible short term memory

@Mitchell - I am touched that you read and appreciated my story, and I hope it helps, for understanding. I know one of the best things that ever happened to me for my Tourette's was a voice class in college, in which I learned to breathe slowly, deeply, and with connection and purpose. I don't know how old your son is, but if he is a bit older and hasn't tried yoga or other breathing techniques to alleviate stress, I highly recommend it for the (temporary) clearing of a cluttered mind. :)
Thanks so much for commenting.

Jaime Daugherty said...

I enjoy echolalia too. except i actually just repeat things other people said. i have to be careful not to sound like im mocking them.