If you want a recipe for making a self-conscious teenager, give them Tourette’s Syndrome but don’t tell them what it is.
My first tics showed up when I was three or four, but I wasn’t diagnosed until my early 30’s. That’s not to say the tics weren’t there. Trust me, they were there. I just didn’t know where they came from, and I was too scared to go to a doctor. Heck, so few people knew about TS even Hollywood didn’t know how to make fun of it.
But my friend sure did. One of the key formative moments of my childhood was the first time I picked up a Sony Walkman and put on headphones. Yes, I’m that old. Sheesh! These days headphones and earbuds are so common that people are immune to their effects. But back then? The sign of a neophyte was the dreaded Headphone Voice.
“Hey, whatcha listening to?”
“I said, what are you listening toooo?”
“I’M LISTENING TO SOME LED ZEPPELIN! IT’S AWESOME!”
“Did you know you’re yelling?”
You get the idea.
The only problem was it wasn’t just my voice that was getting Headphone Voice. It was my tics. At the time I had one I would make in the back of my throat. It sounded like a soft cough or like someone quietly clearing their throat. You could barely hear it.
In Full-On Headphone Mode it came out like a powerful grunt. All of my friends were sitting around staring at me, listening to me grunt like I was trying to clear the world’s most massive case of constipation using only stomach muscles and sound waves. Finally one of them took off the headphones and yelled, “YOU’RE GRUNTING!”
Everyone thought that was the most hilarious thing they’d ever witnessed. So of course the next week everyone at school knew. My new nickname was born: Grunt Boy.
Emotionally it was devastating.
Unless there are self-injurous tics involved, this is actually what causes most people with TS the greatest distress. It’s not the tics themselves. It’s how other people react to them. If you took two people with almost identical tics (yeah… good luck) and stuck them side by side, one could truthfully say their tics are completely debilitating and the other could truthfully say they were no big deal. The difference? How much each one cares what other people think.
I didn’t really learn this lesson until college. And the catalyst didn’t have TS. What he had was style.
At one point during my college career I lived in a house with three other students. We were all in the same department, we all took the same classes, and we all studied together. We also hung out way more than was strictly healthy.
During one of our weekend excursions we wound up at the mall, walking through Macy’s. Without any warning whatsoever, one of my housemates took off through the store, skipping and dancing. He sashayed up to the perfume counter, spritzed himself with a sample bottle and declared, “Doesn’t this make me smell divine?!” Before we could catch up with him he was off in another direction.
We were mortified! We tried desperately to catch up, but he was far too fast. We chased him all over Macy’s as he skipped from display to display, trying samples, asking salespeople if something complimented his eyes… Finally we caught up with him, and one of our other housemates chastised, “What are you doing?! People are staring!”
“Why the fuck should I care what other people think?!” he yelled back.
The ride home was tense and very very quiet.
But that stuck with me. Why the fuck should I care what other people think? They don’t live with me. They don’t eat my food. They certainly don’t clean my house or help me with my homework. In what way does their approval or displeasure impact me in any way, shape, or form?
That’s when it dawned on me: I really shouldn’t care.
Of course I still did. But at least I knew it was a choice I was making. And as the years passed I found that I cared less and less.
By the time I was finally diagnosed with Tourette’s Syndrome I didn’t really give a rat’s ass any more. I was just glad to know why I kept jerking and twitching and making weird noises. It didn’t stop people from judging me. But I knew that their judgement was more of a reflection on them than it was on me. When the doctor asked if I wanted treatment for my tics I could honestly say, “No. I just wanted to know.”
As I left the doctor’s office I felt like I was floating on cloud nine. I sat in my car and reveled in the knowledge that I wasn’t crazy. I just had Tourette’s. If I’d been in Macy’s, I would’ve been dancing.