When Tourette’s took over my life

I'd gone from a head twitch to full-blown violent rages within months. Could I ever regain control?

Topics: Life stories, Mental Illness,

When Tourette's took over my life

It was our third date. Things had been going well so far, but we were still in that stage when small missteps could become deal breakers: affection for the wrong author, failure to hold (or not hold!) the door.

We’d had a pleasant conversation over drinks at one of the two date spots in our tiny college town and were now lolling on my couch, augmenting our discussion with the kinds of small touches you try out when letting someone new into your personal space — shoulder pats, hand-holding, cheek-brushing. It was one of those warm moments in the beginning of a courtship where both parties know they’re making all the right moves and that, for the immediate future, everything was golden.

Then she tried another little touch. She reached over and affectionately tugged on my ear.

“I love you,” I blurted out.

Well, that sure was a deal breaker, wasn’t it?

A shocked silence ensued. I didn’t know what to do. So I dealt with my panic the way I always did: with talking.

“Hold on,” I said. “That was a tic.”

She knew what I meant. After our first date had gone well, I took the plunge and showed her my various medication bottles. “This one’s for my allergies,” I said. “This one’s for my stomach. And this one … ” I hesitated, rattling the small pills around the plastic tube like a tiny maraca of anxiety. “For my Tourette’s. I have Tourette’s syndrome.”

“I know!” she said. “They told me. I love it!”

As it turned out, our mutual friend had let her know, and in another sign of our compatibility, she was charmed. But this still left us, early in our relationship, with a problem. How to handle my embarrassing, untimely tics? There’s no way to really suppress them. Tics are like sneezes: If they want to come out, they will. And the “I love you” was pretty ingrained at that point. A former girlfriend would signal that she wanted me to tell her I loved her by tugging on my ear, and so that physical trigger was strongly linked to the unfortunate blurt. I couldn’t just stop doing it. Instead, my new ear-tugger suggested we modify the tic, so that instead of saying “I love you” I would say, “I love you Dr. Martin Luther King Jr.”

Sometimes the best way to handle a ridiculous situation is to get a little ridiculous, too.

——



I was diagnosed with Tourette’s after my junior year in college, an unusually late time for the disorder to be identified. It’s such an amorphous bundle of symptoms that it’s hard to pinpoint an exact date when it started, and it’s always tempting to peer into the past and guess at behaviors that might have been early signs. When I slammed my head into my wooden desk in frustration during an argument at age 12 — was that a tic? How about when I would clear the back of my throat over and over, annoying everyone? When you’ve always been a weird kid, it’s hard to tell which parts of your personality are merely dispositional and which fall under the umbrella of a medical condition.

The first behavior I can say for sure was a sign of Tourette’s was a simple head jerk. I’d be sitting there, minding my own business, when my head would suddenly swing to the right or the left. It hurt, just as it would if someone had grabbed my head and forcibly jerked it to the side, and as a repeated behavior, it made my neck sore. I didn’t do anything about it right away, though. I figured it was just a shiver.

That summer, I was tutoring elementary school kids and reading Jonathan Lethem’s “Motherless Brooklyn.” The novel is about Lionel Essrog, a guy with Tourette’s syndrome who tries to solve a murder. The book presents an accurate and sympathetic portrait of the disease. It’s so accurate, in fact, that it allowed me to self-diagnose. The sudden jerking of my limbs? Check. The repetition of what others said, especially if it rhymed? That, too. The nonsensical swears delivered in a voice not quite my own, the obsessive counting, the ability of music to quiet my tics — I saw all that in Lionel, and I saw it in myself, too. It would take a visit to the doctor to make the diagnosis official, but I think the first time I thought of my disease as “Tourette’s,” the first time I gave it a name, was while reading Lethem’s book.

Over the next year, I made my way through a medical system that felt awfully confusing at the time but which I now recognize as familiar to anyone with an unusual diagnosis. I was shuttled from neurologist to neurologist and medication to medication. Eventually, I lost any faith in my doctors’ ability to actually understand my disease and found myself hoping only for a treatment that would make it better. I was frowned at sternly amid dark intimations that there was nothing really wrong with me, and in the sterile quiet of the examining room, my tics would often fail to come out and play.

So here’s the question: Did reading “Motherless Brooklyn” finally allow me to identify my illness? Or did reading a work of fiction influence me to frame my behaviors in a misleading way, tilting the doctors toward a diagnosis they would not otherwise have reached? How could I even know?

After going on a medication that didn’t work, I was switched to another, but had to fully come off the first drug before I could start the next. And that’s when the Tourette’s really came out, full and raging. That fall, I walked through the campus at night screaming and hitting trees, entertaining vivid thoughts of hurling a garbage can through the auditorium’s glass doors. At one point, I tried to climb the sheer concrete wall of our library, which was not just disturbing but kinda stupid.

I self-medicated, of course, since there was no other option. Any Tourette’s meds are just tranquilizers of one form or another, so I soaked up all the legal downers I could get my hands on as a way of calming the fury. And it helped, mostly, or at least made me less aware of my craziness. But where did this come from? I’d gone from a head twitch to full-blown Tourette’s in six months. Had the meds created it? Had I created it? Did I somehow unleash my Tourette’s by naming it? Did I conjure that bundle of symptoms out of my body like Bloody Mary? And if so, did that make it more or less real?

——

After college, I moved to New York, and the Tourette’s got worse. One night, I went to a production of “For Colored Girls Who Have Considered Suicide When the Rainbow is Enuf,” Ntozake Shange’s wonderful play the lives of seven black women. It was going fine until a climactic scene when the characters talk about awful things that happened to them, switching between characters and building to a crescendo in which they all yell in unison. In the silence that followed, my Tourette’s decided to interject something. And that something was me yelling, “I’m sorry!”

Apparently my inner Tourette’s has white liberal guilt.

That’s how Tourette’s works. It’s not delusional. You’re not yelling obscenities at some imagined demon. It’s just that your neurons are misfiring and forcing air out through your mouth in a particular tone that’s sometimes a word. In fact, you can have a conversation with your tics, which was the best way I found to defuse public alarm about them. On the subway, I would start swearing (a giant “do not touch” sign in New York), but would then say, “OK, calm down,” like I was talking to an unruly child. People around me would laugh, and while I don’t know what they thought I was doing, exactly, it sure worked better than when I was able to clear a good five-foot radius around me on a packed-full train by swearing violently without any clear cause.

So where do those words come from? While only a small percentage of Tourettics (less than 15 percent) display coprolalia, or obscene tics, it’s certainly one of the weirder medical symptoms you’re likely to come across. That urge to loudly use taboo words is not a strictly verbal phenomenon, either, as there are reports of deaf Tourettics signing swear words involuntarily. And it can be quieted by strange things, like music, where the regular rhythms seem to keep the unpredictable, herky-jerky pace of tics in line. My Tourette’s seemed to like the sound of uninterrupted guitar feedback, like that squealing wash smoothed over the blips in my brainwaves and interrupted the urge to tic.

The answer to where all this comes from, or why certain things help, is ultimately “who knows?” In a historical context, this is an improvement on the old answer — demonic possession — but it’s hardly ideal. Tourette’s, which can be found in 200,000 Americans, is still rare enough and confusing enough that there’s not much research into how it works. I can offer metaphorical explanations, but I don’t know if they’re right, or if they apply to anyone but myself.

Eventually, I found a new doctor who put me on a new medication, one that worked much better and with far fewer side effects. Unfortunately, a full month’s supply of the drug would cost over a thousand dollars out-of-pocket, which made my insurance plan reluctant to cover it. I had to spend a lot of time fighting with them, and getting my pharmacy to stock this still-rare medicine on a regular basis, and so forth. I ended up not taking my meds on the weekend to conserve them for workdays in case something went wrong when it came time to renew, as it always seemed to, and so the character of “Mike on the weekends” became much more sweary and unpredictable — but even I had to admit, weirdly entertaining. I was known to unload a series of f-bombs on people wearing shorts (why shorts?) and the behavior was weird enough that I never got beat up.

Things got better, as they tend to do with the disease; Tourette’s wanes over time, and my expensive medication eventually went generic and I could take it every day, which I did assiduously for about seven years straight. “Mike on the weekends” disappeared. Then, earlier this summer, a clerical error resulted in me having to spend three days drug-free. I wouldn’t say it was perfect: The tension would build up, and most evenings I would take a dose of another tranquilizer I’d been prescribed as a booster. But I didn’t tic much. The Tourette’s has faded.

When I was first diagnosed, it was so much a part of my identity that friends felt like it was a good thing to mention to possible dates. Now, people I meet mostly don’t even realize I have it. Ultimately, I’ve let go of the questions — where did it come from? Could I have stopped it myself if I’d tried hard enough? — in exchange for getting on with my life. There’s a temptation for your mental illness to become synonymous with your personality. After all, it’s the easiest explanation for the way you act. And as confusing and irritating as that can be, that’s also a comfort, in a way, because it’s a kind of armor against the judgment of the outside world. But when that illness-as-metaphor disappears, you are left alone with the hard work of forging an identity on your own.

And now, at the age of 31, is a good time for that. The girl I mentioned at the beginning — the girl I involuntarily said “I love you” to – is now the person I say “I love you” to voluntarily all the time. We’ve been dating for nine years and are engaged to be married, and she still loves my tics as much as she loves me. (I worry that she may love them more sometimes, but never mind.) Tics are ultimately triggered by pressure and stress, and the best way of avoiding them is to be relaxed. That’s a problem for Tourettics, since ticcing in public or the possibility of ticcing in public can easily make you nervous. But with my fiancée, I am always at ease, always relaxed. So maybe that’s what’s made the Tourette’s wane. Maybe having her around lets the Tourette’s settle enough to give the rest of my personality a shot at seeing the light of day.

The nice thing, though, is that it ultimately doesn’t matter so much. As I’ve gotten older, I’ve let go of my self-indulgent interest in my own drama and become far more interested in the task of actually accomplishing something. Besides, when you really get to know other people — your friends, your family, your partner — you realize we’re all pretty weird. It’s just that Tourette’s makes you unable to contain those urges: the chaotic confusion, the love of language, the urge to lash out at the world even if you’re only beating at the air with your fists. It starts at the center of your body and radiates out until it reaches public view, announcing to the world what you’d hoped to keep hidden. And if there’s anything I’ve learned from having Tourette’s, it’s that other people mostly don’t care about your secrets. They probably feel the exact same way.

Mike Barthel is a Seattle-based grad student. He also writes about pop culture for the Awl and the Portland Mercury.

Michael Barthel is a PhD candidate in the communication department at the University of Washington. He has written about pop music for the Awl, Idolator, and the Village Voice.

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