Finding Humanity in My Tourette Syndrome

We still don't know what causes the bizarre affliction, or how many people have it. Characterized by uncontrollable behaviors and widespread misconception, as little as 20 years ago many didn't even know it existed.
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My wife Susan and I attended the 1990 National Conference of the Tourette Syndrome Association as delegates from Kansas City. This is where I first really learned about Tourette's, and myself.

It started with a slender brunette woman in a little black dress.

"I'm Jennifer," she said, kissing my cheek. "And I have to do this." Working quickly, she unbuttoned my shirt to my navel, then pressed her cold hand flat against my chest.

A lot goes through your mind when a beautiful stranger suddenly starts unbuttoning your shirt. In a way, yes, it was sexy. But it was more sad. Her hands said one thing; her eyes quite another. I smiled nervously and looked around for my wife.

"This is embarrassing," Jennifer said, pulling my shirttail out of my trousers as if trying to start a pull-cord lawn mower. "Please understand, it's just what I do."

I saw proof that there were others like me in the world -- otherwise normal people whose bodies did things beyond their control.

You ... molest people? I thought.

"I can't help it," she said in a small voice. "I just can't help it."

I knew that. None of the people I met that day could help it. Tourette syndrome is a tornado that rages through your body. It leaves a debris field of unwanted movements and bizarre behaviors. They crop up in the most amazing ways; in tics and twitches, outbursts and compulsions, and -- in the most extreme form -- in unendurable spasms.

With no more buttons to undo, Jennifer's long index finger traced a playful line down my right cheek, then dropped straight to my belt buckle. At one point her hand came dangerously close to heading straight down Broadway.

"Hell-o," I said, jumping back as if someone had dropped a firecracker at my feet. I wanted to be sensitive. I politely guided her hand away and excused myself.

"It was very nice meeting you ... I think I better find my wife."

That was one of the first things I really learned about Tourette's: You have to be ready for anything.

***

"Aaaauuuughhhhhhhh!"

I flinched as a terrifying scream echoed through the room over my right shoulder. I'll never forget the sound. It genuinely sounded like someone had been stabbed. I turned toward the sound in time to see a middle-aged man with tufts of graying hair around his temples just finishing his yell. It came out of nowhere every few minutes thereafter as he spoke, a blast that seemed to come from the depths of a tortured soul. An articulate and well-informed speaker, he seemed particularly interested in history and foreign policy. When his symptom came he simply excused himself by holding his right index finger in the air in front of his mouth as if to say, "one second."

Then he turned his head and screamed this blood-curdling scream. Seconds later he resumed his talk, without explanation, exactly where he had left off.

Even though I had been diagnosed in 1984, it was here at the conference that I first saw proof that there were others like me in the world -- otherwise normal people whose bodies did things beyond their control. And it was on that night that I realized that Tourette syndrome was one of the most fascinating conditions I had ever seen. Sure, other conditions were more serious. Some of them were killers. But when it came to personality, they were pretty much one-trick ponies. Diabetes? Cancer? Compared to them Tourette's was the funhouse mirror of maladies. The same disease that made me shake my head and blink my eyes made Jennifer unbutton shirts and a middle-aged man scream like Janet Leigh in the shower? The word odd hardly did it justice.

Tourette's is believed to be caused by a chemical imbalance in the brain. In some cases, researchers think, it might be due to an abnormality in a certain chromosome that broke off and reattached itself backward. Estimates of how many suffer from the syndrome vary widely. Some experts claim that about 100,000 people in the U.S. have full-blown cases. Counting mild cases that likely go unreported, some say the number could be in the millions. 

The variation in numbers mirrors the expansive variety of physical and vocal tics, odd behaviors, thoughts, and compulsions the disorder spawns. It may cause you to blink your eyes, blurt out swear words (the TV stereotype, which is actually a relatively rare manifestation), hop like a rabbit, have racing thoughts, or repeat the last word of a sentence endlessly -- endlessly, endlessly.

Or it may cause you to shake your head, as I do.

There is no cure for Tourette syndrome, but some drugs can lessen the severity of its symptoms. Researchers believe that in some cases Tourette syndrome is genetic, and there is evidence that it runs in families, although not in mine.

My Tourette's was mild in comparison to others' at the conference. But it was bad enough. Since it wasn't always obvious, some other delegates asked me about my symptoms. So I told them.

Well into the twentieth century the public and medical community thought children with tics were likely the result of abuse or bad parenting.

Ever since I was young, I said, I've felt an impossible-to-describe tension in my body. It's a constant, anxious uneasiness. But even that's not a good description. There just aren't any words that do it justice. Whatever it is, it's always building, worsening. The tide is coming in. Sometimes it comes in gentle ripples, other times in larger waves. And sometimes it's a tsunami. Whether it takes two seconds or two hours, eventually the urges becomes so strong that it's impossible to focus on anything else. At such a time the only three things I care about are getting rid of the feeling, getting rid of the feeling, and getting rid of the feeling. And the only way to do that is by ticking, which in my case means wrenching my neck or shaking my head in a certain way until it feels right. Even if the relief only lasts a few seconds, it's worth it.

When I told the stories to stranger after stranger they nodded their heads. They knew too well what I was talking about.

Back home, almost nobody knew. Trying to tell someone about Tourette's who doesn't have it is like trying to teach trigonometry to a ten-year-old. You can do it, but only to a point. One of my neighbors said, "You're making that up," before realizing I was serious.

A lot of people are fooled by Tourette's. Just ask all the doctors in Pennsylvania or Nebraska who failed to diagnose me with a single medical problem. Or my father, who was a PhD and a voracious reader. Or my mother, who had a master's degree and worked as a newspaper reporter. Or my uncle Dick, a psychiatrist who first suggested I go talk to somebody. Or any of my neighbors or teachers or counselors or ministers or friends. Nobody knew why I shook and twitched -- least of all me.

When I was a boy there were very few sources of information about people with Tourette's. There was no Internet, no support groups, no HBO specials, no books, associations, nor national conferences. But it could have been worse. I could have lived in the Middle Ages, where I can only imagine people with Tourette's were thought to be possessed by the devil. When not being flogged or burned as witches, they were likely confined to asylums. Such draconian treatments eventually disappeared.

Unfortunately they were replaced by ignorance of a different stripe. Well into the twentieth century the public and medical community thought children with tics were likely the result of abuse or bad parenting. Even in 1990 some doctors still misdiagnosed people with Tourette's as having psychological issues, epilepsy, or schizophrenia. More than one hundred years after the first case of Tourette syndrome was described in 1885 by French neurologist Georges Gilles de la Tourette, you'd think everyone would be familiar with Tourette's.

You'd be wrong. While my neurologist was a good source of information, several general practitioners I went to in the 1990s still knew nothing about it.

It's no wonder. Only eighteen years earlier, in 1972, the National Institutes of Health turned down a grant proposal by the newly formed Tourette syndrome Association because the reviewers believed "there were probably no more than one hundred cases of Tourette's in the entire nation." Today, a website sponsored by the same National Institutes of Health and the U.S. Library of Medicine, the largest medical library in the world, put the prevalence of all forms of Tourette's at roughly one percent of the population. That's three million people in the United States alone. And even that's a conservative estimate, since many people with mild tics usually don't seek medical attention.

Is there still misinformation about Tourette syndrome today? You be the judge. On the forum page of something called "Godlike Productions" the following question was up for discussion: "Is Tourettes [sic] syndrome demon posession [sic ]?"

"Yes," wrote an anonymous poster from the United Kingdom. "In my humble opinion it is demon possession, and can be cured by an adept spiritual healer."

Then there was this response from "Observer from Australia."

"Yes!! Tourette's is part possession. As some have stated it is the responsibility of the semi-possessed to learn to overcome. It is also in BLACK AND WHITE for the stupid to see!"

And, finally, there was this post by "Grower" from the United States.

"M I a bad person for laughing uncontrollably at people with this disease?"

No, Grower. Just an ignorant one.

But I pray every day that they can fix people like me. They are working on it. Some researchers believe Tourette's may be a small key that unlocks a bigger door. An article in Harvard Men's Health Watch put it this way:

Tourette's is especially interesting to ... scientists because its symptoms lie on the border between the voluntary and the involuntary, the physical and the mental, the normal and the pathological. A better understanding of these symptoms could lead to a better understanding of many other neurological and behavior disorders.

Honestly, at the time of the convention I didn't care about other people's neurological disorders. I just wanted to believe that I had a chance to get rid of mine. But more than that, I wanted to believe I was worth something, that I had a future, that my life could be more than just surviving. I was looking for some hope and some humanity in a disorder I could neither change nor understand. After being undressed, screamed at, and cursed out a thousand miles from home, I had found it.


This is adapted from Ticked: A Medical Miracle, A Friendship, and the Weird World of Tourette Syndrome.

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