Tics! Tics! Tics!

Tourette Syndrome Awareness Month is May 15-June 15 (and I'm a little behind)

What it’s like having tics

Me, circa 1985. Future writer or pretentious little twat? You decide.

My substack is called “Bright Boy: A Tourette’s Life” and yet I haven’t posted much about Tourette in some time. I toyed with the notion of dropping a Tourette’s Life, but decided against it because a life contains many, many elements and I can write about multiple things. Samuel Johnson was an 18th century English writer who, among many accomplishments, penned the astonishing Dictionary of the English Language (1755). A man of great learning, Johnson also had severe and by all accounts rather shitty tics. Had he lived today, he would’ve surely been diagnosed with Tourette Syndrome. But he lived more than 100 years prior to the identification of the disorder by Georges Gilles de la Tourette.

TS is very much part of my life, even if it’s not something I discuss that often. This weekend I’ll be attending TIC-CON 26 in Nashville, so if any Bright Boy readers are planning to attend, please come find me! I’ll be part of Friday night’s adults with TS meet and greet.

But here’s a confession, my friends: over the years, I’ve wrestled mightily with my diagnosis.

Why? Well, I assume it’s some kind of imposter syndrome at work. Although TS is more than a tic disorder, my own TS manifests most obviously in tics. After my first humiliation in elementary school (a scene I fictionalized in The Book of Losman), I became adept at concealing these tics and to this day I’ve developed a reasonably good way of controlling them in public. But that’s also part of why I question the diagnosis: If I can control them, are they really tics? And if they’re not tics, does that mean I don’t have TS?

To recap Tourette Syndrome, in order to get diagnosed you have to have two motor tics and one vocal tic lasting at least one year (and typically developed during adolescence). I check those boxes in a big way. But underneath that ticcy layer, as I’ve written about before, is a strata of co-occurring conditions ranging from OCD to ADHD to ADD to Anxiety Disorder. I don’t really fit neatly into the TS schema (except for the tics and maybe a touch of OCD or anxiety), so this sometimes lends itself to a kind of self-discrimination in which I figure all my vocal and motor tics are simply some weird childhood stimming need that has carried over into adulthood.

(An aside: When I get mopey and dopey and question my diagnosis to my wife, she is pretty blunt with me in response. “I’ve lived with you for twenty-five years. Trust me, you have TS.”)

There are times, such as in the past month following my father’s death, in which I tic so hard and so often that my neck hurts and a dull ache forms behind my eyes. Like brain freeze after you eat ice cream. This is a ticcing fit, and the thing about a ticcing fit, I’ve come to realize, is that I really can’t stop it until it has run its course. A ticcing fit, in other words, is much more explosive than a series of low-impact tics (I do these low-impact tics frequently in public, but unless you’re watching me closely, as most don’t, you probably won’t notice).

A ticcing fit is more diabolical; it’s like the great cartoon villain Boris Badenov: a ridiculous pest you can’t get rid of. When I feel the urge come over me, the only way for me to settle this urge is to liberate the tic from its cage. Fly, baby, fly. What do I feel when I have this “urge,” you ask? It’s the right question. Here’s how it works for me:

I’m sitting at my desk writing these words. There’s a little voice inside my head, it’s not a real voice, it’s some elemental ghost inside my machine that’s stirring up trouble by flashing signals to my brain, telling me you need to do this, you need to do that, if you don’t do this or that you’re not going to feel okay. You’re going to feel worse than okay.

Picture me behind the wheel of my sweet little Toyota Corolla. I’m driving down the road and I’m feeling an urge because the little voice that’s not a voice is telling me I don’t feel okay but if I do this one thing, if I tic, I will soon feel better. So I tic again but I’m still not better so I tic again but I’m still not better so I tic again but I’m still not better so I…

Does the grammar of my condition make sense? A ticcing fit is a cycle that repeats ohne ende until you’ve managed to still the urge in your brain that keeps you at it. Sometimes, when I’m brushing my teeth, say, or driving or writing or reading or exercising—or whatever!—I’ll need seven or eight or nine consecutive head jerks or air chuffs or snorts or whatever it takes to make the shit stop. That’s just the way it is. Whether it’s a simple tic or a full-blown fit, I’ve never been able to make the tics go completely away.

I manage to contain my more propulsive fits in public, though. But that’s in part because I always have an exit strategy. If I feel a ticcing fit/diabolical urge coming on and I’m around people, I can remove myself from the situation and go somewhere to be alone. That’s ingrained behavior for me at this point in my life.

If you’re reading this and you have a TS diagnosis, how is it for you?

Tourette Syndrome Awareness Month

Since this is Tourette Syndrome Awareness Month, and I’ve been a poor soldier who hasn’t even mentioned it until now, I’m going to uplift three members of the TS community who I follow who do an outstanding job of raising awareness about the condition. This not an exhaustive list by any means, but it’s a manageable one. I’m looking forward to meeting more in the community this weekend in Nashville.

Britney Wolf is the host of “One Tic at Time,” and she’s regularly posting excellent and well-viewed videos explaining TS to the public. Here’s a random one I picked today, and it coincidentally aligns with my post above (though she uses a different word). She also published a book called Ticcing My Way Through Life, which I hope to write about soon.

Greg Lawrence, whom I’ve interviewed on this Substack, is the founder and director of the Ryan Lawrence Foundation. Greg is Ryan’s father. Ryan sadly passed away a few years ago; he had a severe form of TS, and Greg (who also has TS) has been a huge advocate for others with TS. The foundation is conjoined in a unique partnership with Toronto Western Hospital in Toronto.

Emma O’Donnell has been advocating for TS awareness since she was in high school, and her videos are always entertaining and smart. See below.

K.E. Semmel is a writer and translator. His fiction and nonfiction have appeared in Ontario Review, Lithub, The Millions, HuffPost, Electric Literature, The Writer’s Chronicle, The Southern Review, Washington Post, and AARP online, among others. His debut novel, The Book of Losman, is about a translator in Copenhagen living with Tourette Syndrome. More at kesemmel.com.