Takes a Lickin’ and Keeps On Ticcin’

One point about Tourette’s Syndrome and tics seems to cause a good bit of confusion – the idea that they’re voluntary. (Hint: They’re not.)

Tics are a lot like a yawn: You can try to suppress them. You can occasionally stave one off for a while. But when your body says it’s time to yawn, eventually you’re going to yawn. (Another similarity between yawns and tics is that when you yawn you look dorky as hell. Not so different with a tic. So don’t judge. Everybody looks like a dork when they yawn, and everyone yawns.)

The great thing about yawns is there’s a cure: Stop hanging around with boring people. Or get some sleep. Something like that. Eventually your body stops needing to yawn, so you quit having to do it. Tics? Not so easy to fix.

Years ago I wrenched my neck from a repetitive head jerking tic. I went to the doctor to see what they could do to help. Of course I was still ticcing the whole time I was in the waiting room. I kept ticcing after they’d ushered me into an examination room. I was still ticcing when the doctor walked in. “What seems to be the problem?” they asked. I explained about the neck, and how much it hurt. “Stop moving your head like that.” “What?!” “If you’ve hurt your neck, you should stop moving your head like that so it can heal.”

No shit, Sherlock!

The problem, of course, is that you can’t. I sure couldn’t, anyway. How long can you suppress a yawn? A couple of seconds? A minute or so? Maybe. A week? Good luck with that.

My brother ran into this particular buzz saw harder than anyone else in my family. When I was a kid one of my tics was to make a loud snorting sound. Every couple seconds it would go off. SNOOOORK! (For those readers who are laughing to themselves at my expense right now, remember you look like a dork when you yawn!)

During the pivotal cliff-hanger scene of the season finale of one of my brother’s favorite shows, one of the main characters opened his mouth to say The Line that set up The Dilemma that would haunt The Audience until the next season. And right at that moment, SNOOOORK! Ohmigawd, I thought he was going to kill me!

He scoured the TV Guide for the next couple of months, trying to catch a rerun of the show so he could finally hear the line and understand what had been said! (Yes, this pre-dates streaming video by… oh… thirty years?) Finally, only weeks before the next season started, that same episode aired. He watched avidly, waiting for The Line. I sat on the couch trying as hard as I could to snork silently to myself. The Scene came, the actor opened their mouth for The Line, and… SNOOOOORK! I’d been suppressing so hard the whole time, when it came out it came out BIG!

Yeah, that time he really was gonna kill me. I had to run, and run hard.

The point to take away from all this is that a person with TS really can’t stop the tics. You can tie them up in a straightjacket and shove a ball gag in their mouth, and they’re still going to tic. You can threaten them with life and limb like my brother did, and they’re still going to tic.

So when someone tells a person with TS to “just stop it”, it’s sure’s hell not going to stop them from ticcing. It’s just going to make them feel bad about it.

A Ticcing Life

I’m a guy with Tourette’s Syndrome. I don’t mean this in some vague self-deprecating sense. (“I’m such a potty mouth! I must have Tourette’s or something.”) Naaah… I mean it in the literal sense: I was born with it, grew up with it, was diagnosed with it, and spend every waking moment with it.

Tourette’s isn’t contagious. The only way to catch it is to inherit the genes that cause it. It’s not something you ever get over. In a sense that’s one of the great things about TS: it comes with a lifetime guarantee. It’s right there in the sales brochure: Treat your tics right, and they’ll be with you for the rest of your life! Oh yayyy… Just tell me I didn’t get charged extra for the extended warranty.

The flip side to this, though, is that I have no idea what life without Tourette’s is like, and never will. So when people ask what it’s like to have TS, all I can say is, “It’s normal”. I’m not trying to be flippant or ironic. It’s just the honest truth.

But I can understand that it’s also not a very satisfying answer, so I’m writing this blog in an effort to expand on that whole “It’s normal” thing. Some of the material will be borrowed from other blog posts I’ve written over the years, but most of it will be new.

My audience is you: someone who is genuinely interested in learning what life with Tourette’s Syndrome is actually like. You may be a fellow ticcer, here to compare stories and scars. You may be a parent who can’t believe the diagnosis their child’s doctor just handed down. You may be someone who saw a video on Youtube and did a Google search. You may be someone who’s wondering if you could ever be friends with this strange person you just met who jerks, flaps, and tics, and keeps making noises. Or you may be someone who wound up here by accident, and have a few minutes to spend reading a blog. I’m writing for you all.

Welcome to a ticcing life.