I knew I was different, but I was shocked to hear my doctor say these words to me

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For as long as I can remember, I’ve had the characteristic vocal and motor tics associated with the condition.
By that time I’d been ticcing for years — in fact, I’d already been hiding my tics for years.
Like uninvited guests overstaying their welcome, both tics remain with me as I write these words.
I have Tourette, but Tourette doesn’t have me — though my wife would certainly disagree with this.
Since I’ve spent a lifetime hiding my tics, I’ve become successful at blending in, even when I’m meeting people for work or on stage in front of an audience, giving a reading or interviewing authors.
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A severe bout of tics struck me a few years ago while I was driving to a major work event after a particularly stressful day. For me, this was not out of the ordinary. I’d had tics almost my entire life, and stress would always make them worse.

I almost rear-ended a car on this particular day due to my uncontrollable snorts and jerks. I eventually went to see a neurologist at that point. I had to know exactly what was causing me to tic. It shocked me to hear that I had Tourette syndrome.

It was a relief as well. I’ve had the recognizable vocal and motor tics linked to the illness for as long as I can remember. I dealt with them by burying them deep beneath the surface of my mental lockbox, hidden from view. I believed that having a diagnosis would help me deal with my tics in a healthier way and would also provide clarity.

The 1980s were my formative years; I was raised in a small town in western New York during that era of ozone-depleting hair spray, silly mullets, and syrupy synth pop. Few people in my small town were aware of Tourette syndrome. Undoubtedly, I didn’t.

I remember watching an episode of “60 Minutes” or some other television show with my mother when I was a teenager. It showed a young man in a big American city shouting profanities. As I had been hiding my tics for years, I had been ticcing for years at that point. However, I never, ever did swear or yell in public, so I didn’t recognize myself in this program.

One day in elementary school, a teacher called a break and told me to stop making noise and “doing that thing you’re doing with your head.”. She really did “that thing” in front of me and my classmates since I was bothering her and apparently interfering with her class. With everyone looking at me, I embarrassedly put down my own. I had no way of telling her that I was powerless over myself.

When a bird catches your eye in the wild for the first time, it’s known as a “spark bird” and is the reason you became an avid birdwatcher. However, this was the turning point for me—I realized that my tics weren’t “normal” and that if I wanted to be normal, I had to hide them.

My mom didn’t mention if she thought there was a connection between me and the kid we saw on TV, and my parents didn’t take me to the neurologist to get checked out. I mistakenly believed that having Tourette syndrome meant yelling profanities in public because of that TV show. I discovered that the Centers for Disease Control and Prevention state that coprolalia, the name given to this type of tics, “only affects about 1 in 10 people with Tourette.”. It is not as widespread as the popular media would have us believe.

For me, ticcing has always meant having an almost constant desire to move my body. These head jerks, blinks, snorts, grunts, throat clearings, tongue clicks, etc. may not be appropriately described by the word “urge.”. , but it’s the greatest I can do. My body seems to have a will of its own from the moment I wake up until I go to sleep. I probably tic at least a hundred times in an hour. My tics take over my body completely like a parasitic fungus when I’m under a lot of stress, like when I rear-ended that car.

Nobody wants to be the person that people crane to look at in public because they twitch or make strange noises. You can imagine them asking, What’s wrong with this guy? I just wanted to blend in, to become invisible, after my teacher called me out because you don’t want to be seen as a freak in elementary school. Your desire is to emulate everyone else.

I found that I could make my ticcing less noticeable, but I couldn’t stop. I created a vast array of tic-hiding techniques to protect myself from guilt and humiliation. I used to put my hand beneath the table and repeatedly waggle my fingers or ball my fists in place of jerking my head. Rather than making audible and peculiar noises like snorting or chuffing, I would make a soft clicking sound with my tongue, akin to an uneven metronome.

These techniques kept me mostly out of sight while satisfying my almost constant tic. As children and adults with tics frequently are, I wasn’t bullied or teased at school, but if I hadn’t figured out how to control my tics, I probably would have.

Ever since, I’ve been utilizing these tips.

Even though I’ve gotten good at stifling, bottled up, and tightening the lid on my internal tic, I’m still acutely aware of it when I’m out in public. It’s a whole different story at home, where I can just be myself. My tics are sporadic.

I started spitting air out of my mouth six months ago, like when someone blows hair off their face. A few weeks later, I started hocking, like I was about to spit a loogie. Both tics are still with me as I type these words, like unwanted guests staying longer than they should. A specific tic may occasionally disappear only to resurface a year later, much like an annoyance from a big brother who had left for college only to return home sporting a shaggy beard and a sly smile.

To control your tics, the only treatment available for Tourette’s syndrome is avoidance. Alternative options such as the antipsychotic drugs Abilify and risperidone are available, as are antihypertensives like guanfacine and clonidine. Yet, the possible side effects of these medications are really something I’d rather have tics than.

I tried guanfacine after receiving my diagnosis, but it made me feel like I had swallowed sand when I woke up in the middle of the night. I stopped taking the medication because I felt like it was a punishment for not being able to control my tics. I haven’t selected any other therapies since then, but I recently discovered “comprehensive behavioral intervention for tics,” or CBIT, as a promising alternative that I will give a shot. Not a single drug is used in this. Rather, it teaches you to modify your actions and become less twitchy.

While about 1 million Americans suffer from other chronic tic disorders, researchers estimate that between 350,000 and 450,000 Americans have Tourette syndrome. Since many people outgrow their tics by late adolescence, there is thought to be insufficient evidence to determine the number of adults with Tourette’s syndrome. It is estimated that 50% of school-aged children do not receive a diagnosis for Tourette Syndrome, despite the fact that the condition “occurs in 1 in 160 (0.6 percent)” (italics mine).

In 2022, the group conducted a survey which revealed that 10% of children diagnosed with tic disorder made at least one attempt at suicide in the previous year. That’s a startling figure that illustrates how hard it is for many tics sufferers to feel at ease in their own skin. I’m happy that children (and their parents) with Tourette syndrome can now access resources, such as a community of support, to help them feel less alone or stigmatized about this uncomfortable condition in their lives.

My tics did not get better on their own. Few people are aware of this aspect of me since it’s difficult for me to openly acknowledge something I’ve always internalized and connected to shame. Hurt and humiliation are deeply ingrained; even if you are not harassed or bullied, they leave easily removed scars.

How many other adults live their lives without ever being noticed, just like me? Who, like me, never outgrew their tics but instead learned how to hide them? Who didn’t take advantage of the resources provided by the Tourette Association of America, or the abundance of current research? Who found it difficult to make real friendships because they were afraid of being discovered as someone who had tics?

Aside from the bothersome tics, I lead what most people would consider to be a “good” and “regular” life. I live a creative life as a writer and translator, and I have a wonderful job, a wife, a child, and a house. My wife would probably disagree, but even though I have Tourette, I do not have Tourette. You can’t keep something like this from someone you live with, so I suppressed my tics in front of her when we first started dating 25 years ago. I’ve given up trying. She is encouraging, even on the nights when my twitching body keeps her awake.

Having lived my entire life hiding my tics, I’ve gotten good at fitting in, whether I’m meeting people for work, reading aloud in front of an audience, conducting author interviews, or meeting new people. Still, there have been times when I’ve felt incredibly alone. Although there is a cost involved, withdrawing within yourself is a useful strategy to avoid embarrassing yourself in public. You eventually come to feel as though you are a ghost in your own life, known only to yourself and a select group of people you can trust. I have a hard time making friends.

After over a decade of translating over a dozen Danish novels and penning numerous unsold manuscripts, I will be releasing my first book, “The Book of Losman,” later this year. The similarities stop there; it’s about a literary translator with Tourette, just like me. The story revolves around a Copenhagen, Denmark-based man named Losman who participates in a clinical drug study to relive his early years in an attempt to treat his Tourette syndrome. Fiction allows one to imagine anything they want as long as the world they create is credible, so why not? That is the beauty of writing fiction.

Although I’m too old to comfort the young child who was called out in elementary school, “normal” is a very subjective term that is loaded with presumptions. I can’t go back in time to comfort him in real life. I’ve had tics for almost 50 years, and managing them has become a part of who I am. I will keep my tics hidden in public even after publishing this essay. Why? Because stigma is a heavy burden.

In the end, I find that the boundary between humiliation and dignity is rather thin. The younger generation has my utmost admiration because they are able to post themselves publicly on platforms like YouTube or TikTok. I’m not interested in that. However, I can contribute to the normalization of Tourette and other tic disorders by sharing my story here. People who are similar to me are everywhere. All we want is what every person is entitled to, which is to live without fear of condemnation.

G. D. E. More than a dozen novels written in Danish and Norwegian have been translated by Semmel. The Writer’s Chronicle, The Southern Review, Literary Hub, Ontario Review, The Washington Post, and other publications have published his nonfiction and fiction. In recent times, he has translated “The World and Varvara” by Simon Fruelund. “The Book of Losman,” his first book, will be released by Santa Fe Writers Project in October 2024. You can reach him on the web at KESemmel . com as well as on Twitter/X at @KESemmel.

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