Twitch and Shout

Twitching, cussing, screaming- the media has made it comic affair. Some friends have laughed, "I wish I had tourette's syndrome!" as if it were a humorous gift from God, a convenient excuse to act out. Usually I'll smile meekly, knowing they derived this fantasy from popular crap-comedies, but they don't know the half of it.

My cousin, Ryan, has Tourette's. Tourette syndrome (TS) can be defined as "a neurological disorder characterized by repetitive, involuntary movements and vocalizations called tics." But contrary to the image Hollywood has cast, most Tourette's kids don't display their symptoms in an obvious and disruptive manner. Most often their tics will peak at obsessive rituals, wincing, and grimacing. In truth only a very rare few (10 to 15%) will experience severe verbal and motor tics, the kinds that provoke and humiliate. Ryan is one of these few.
If you think screaming a profanity or two has been the bulk of his worries, forget it. For Ryan, keeping his mouth shut and his body relaxed has been a full-time job since the age of four- no time-outs. Tourette's is usually combined with OCD, so quite often Ryan's "tics" are reactions to obsessive thoughts from which he can't escape, leading to a mysterious strand of repetitive patterns combined with screams of angst that come off as eerie and demon-like.
It's been an odd thing to comprehend. My family has known of his disorder for nearly twenty years, and I can't deny that much of the time his antics have been amusing. How else is one supposed to react as a boy runs in circles, licking a Spice Girls poster and snorting? It's awkward and shocking, and it usually prompts a giggle. For the general public, his behavior has demanded...an adjustment, to be sure. As we cut to the front of Disneyland ride lines (thanks to his disability pass), peeved mothers never fail to bring attention to Ryan's middle finger, extended and flipping off the crowd we've just cut. On another level, peers tended to find his screaming and outbursts especially freaky, making Ryan the sole target of their middle school cruelty. Being mean to Ryan was easy; HE was never nice, never sociable, never patient. HE never engaged, made lives easier or failed to rat us out. Now as adults we understand what our parents kept insisting: the disease is exhausting; the disease destroys any sense. But as children, understanding these complexities can be impossible.

The other day I visited him in Sacramento. Now a 23-year-old employed by a casino, he is generally doing well. Through years of treatments and simply growing older Ryan is more able to control his overt tics- a great success. But life as an adult hasn't been easy. At a time when religion became his 'obsession', for example, Ryan was hired as an intern at a Christian radio station. The thrill of this new job led him to internet message one of the station bigwigs (as he was previously instructed), his excitement reaching such a level that expletives worked their way between his words-in typing. Shortly after, the station phoned to say that a "message from God" had advised them to fire the disabled boy, a piece of news causing him to lose all hope ("If God rejects me, who else do I have?"). It's been a tough run. As he cried during our visit, he spoke of his self-loathing, his lack of companionship. I hugged him close, becoming more aware of my own raw gut pain, this sensation of sympathy and compassion for a suffering human. As he blubbered I couldn't, however, help but notice that, despite his past learning frustrations, Ryan has become incredibly articulate and insightful- both of his condition and that of humans. For someone who feels so defeated, I thought, he's pretty damned strong. While he lamented over his "craziness", I had to acknowledge that he's really no crazier than most people I encounter on a day-to-day basis and, even if he is, he's certainly more interesting.

Why are we so inclined to ostracize the 'disabled'? Could we not think of these 'disorders'- autism, tourettes, whatever- simply as different forms of functioning? New levels of understanding? I don't know. Either way, we need to check our awareness. My cousin is a role model, but his disorder is a stigma. How silly. As we sat there on an evening porch, hugging and crying, I let him know. I even twitched and cussed a little to reassure him of my example, making his freckled face break to a smile. I guess we're getting somewhere. :)

Alison May
Photo compliments of artist "Phosu"