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fostering the humanistic practice of medicine publishing personal accounts of illness and healing encouraging health care advocacy

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Tourette Syndrome

Editor’s Note: This piece was a finalist in the Pulse writing contest, “On Being Different.”

“Hello. My name is Joan, and I have Tourette syndrome.”

This is my fantasy greeting when meeting people. It would give them notice that there’s something different about me—that I have a chronic neurological condition. It would alert them that I might make repetitive, annoying sounds, like clearing my throat or sniffing; or suddenly make a strange body movement, like flinging out my arm or jerking my head or shuddering. Not to mention the unexpected outbursts of irrational anger.

Instead, I have spent my life trying to suppress my tics and pretend that I was “normal”—and suffering intense embarrassment when I’ve failed, and someone looks at me strangely and asks, “Are you cold?”

Usually, this is a stranger, such as a clerk in a convenience store. The important people in my life–my husband, children, grandson, other family and friends–either love me too much to comment or are so used to my tics that they no longer notice them.

When I get this question, my ideal response (which I have practiced many times in my head) is calm and low-key, perhaps accompanied by a chuckle: “No, that’s just my Tourette’s.” Maybe a brief explanation about Tourette syndrome would follow.

Most often, though, I shake my head, mumble “No,” avoid eye contact and get out of the situation as quickly as possible.

On rare occasions, as happened a few months ago, the question comes from someone with whom I have an ongoing relationship. In that instance, I took a big breath and blurted out my rehearsed response.

“I didn’t know you had Tourette’s!” she said, looking startled. Then, probably out of her own embarrassment, she told me about an eyelid twitch that has afflicted her sister for years. Glad to have the focus off me, I chose not to mention that the two conditions are not at all the same.

My first TS symptoms appeared when I was quite young: I would pull at my clothing if it didn’t fit “just right.” The tics grew more obvious when, at age five, I had to get glasses. The sensation of the frames’ pressure against my nose and face was horrible, and I made all sorts of facial contortions to relieve it.

From there, the symptoms progressed to other body movements and sounds. At one point in fifth grade, my throat clearing became so constant that my father refused to let me spend the night with a friend until I stopped. I was able to suppress the sound long enough that he finally gave me permission to visit her.

All of this took place in the 1950s, and no one understood what was going on, including our family doctor.  Even though the condition was first identified in 1885, it’s unlikely that anyone in our small Pennsylvania town had ever heard of it.

My mother, operating from an old-fashioned frame of reference, concluded that I had “St. Vitus’ dance.” Since this condition (actually Sydenham’s chorea) is characterized by rapid jerking movements of the face, hands and feet, she wasn’t too far off. Nevertheless, my parents both believed that I could stop the movements and sounds if I really tried. Although they never said so, I felt that they doubted my willpower.

Despite–or perhaps because of–their attitude and my impediment, I did well in school, became a percussionist in high school and performed in many bands and orchestras during those years. After attending a three-year nursing program and obtaining a masters degree in health education, I enjoyed a successful forty-four-year career in health care.

In all of those years, with one exception, I don’t recall any of the patients, instructors, colleagues, managers or doctors with whom I worked ever commenting on my twitches. Perhaps I’ve suppressed the memories; perhaps they felt too uncomfortable to say anything; or perhaps I became more adept at suppressing the tics as I grew older.

The one doctor who spoke up was an obstetrician at the hospital in Stockton, California, where I was the maternity manager, and in my mid-forties. He cornered me in my office one day.

“You know, I’ve noticed that you often make sudden movements,” he said kindly. “I think you may have Tourette syndrome, and I’d suggest that you see a neurologist to get a diagnosis.”

I hated every minute of that encounter because I felt upset at being forced to acknowledge my condition, but I’d already suspected that I had TS, having seen an episode of the television show Quincy in the late Seventies. I don’t recall the story line, but one of Jack Klugman’s investigations involved someone with Tourette’s, in whom I recognized myself.

So, with trepidation, I went to see the neurologist. To my dismay, he was very dismissive.

“TS only occurs in males,” he said authoritatively.  “It’s much likelier that you have cerebral palsy.”

Feeling humiliated, I vowed never again to subject myself to that kind of treatment.

Several years later, my older brother sent me a letter saying that he’d seen a television special on Tourette’s, and he felt convinced that this was my condition. He’d enclosed a pamphlet about TS from the University of California in San Francisco, and it had a contact number.

Perhaps all the stars were in proper alignment; perhaps my brother made a persuasive case. For whatever reason, I gathered my courage and called the number.

The person at the other end of the line was kind and supportive and sent me a questionnaire to determine if you had TS. Of course, I ticked just about every box on the form.

I presented this information to my physician, who referred me to a neurologist. I felt reluctant to subject myself to humiliation a second time, but my doctor assured me that this neurologist was not like the last one.

The official but unsurprising conclusion, arrived at when I was almost fifty, was that I have Tourette syndrome. I was offered medication to help control the tics, but I chose not to go that route because of the possible side effects. Besides, I’d lived with this condition my whole life, and it hadn’t impeded me in any way, other than having an occasional embarrassing moment.

Now, at seventy-nine, I notice that my tics are occurring more frequently and are harder to suppress. For some reason, this feels especially difficult in yoga class. Since I’ve been brave enough to tell the yoga instructor about my TS, I feel comfortable that she’ll understand when she sees me squirming around or twitching during class.

Looking back on it all, I feel grateful to have lived a full, “normal” life despite this chronic condition, which has set me apart from others in such obvious ways.

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Joan Greland-Goldstein is a happily retired nurse/manager/health educator/project manager. “The joys of my life are spending time with my husband, children, grandson, nieces and friends; reading; traveling as much as possible; quilting and knitting for charity; playing percussion in two community bands and exercising.”

Comments

7 thoughts on “Tourette Syndrome”

  1. I have TS (a sniffing tic) which has been a source of discomfort and shame for me for years, as well as creating significant tension in my neck and face from sniffing hundreds of times daily. Some don’t notice it, others ask if I have a cold or need a tissue, and a few people have been quite cruel about it. Sometimes I pass it off as allergies which I do have, and other times I do share that I have a TS diagnosis. I had some blinking tics in grade school which passed, but this has persisted since my teens–I am now 60. No meds have helped or been tolerable. It wasn’t diagnosed as TS until my late 40s. I’ve avoided some situations and jobs because I thought the sniffing would interfere/be an issue. I, too, had a successful career in healthcare as an NP. Thanks for sharing your journey. You’ve had a lot to cope with, and you’ve aced it all.

  2. The dismissiveness of that doctor makes me see red! I’m glad you have a diagnosis now & I’m impressed at your ability to advocate for yourself. Thanks for sharing your story.

  3. Wow! What a difficult life you have had. I admire your bravery to boldly participate in band and put yourself in a healthcare setting where you were interacting with patients. I wish I had your courage.

  4. Thanks for sharing that you weathered it! The long term is reassuring, because so many of us thought maybe it would lead to epilepsy or a deeper impairment. My husband’s cousin has it, and once he was made to go to court for some reason, and my husband wanted to get him out of there before he upset a judge. He would sputter obscenities, as part of his disease. Luckily, it did not cause any long-term disability and he did successfully get out of the court situation before causing himself any embarrassment. I am glad people are learning to recognize it, and to put so many worries to rest!

  5. Thank you for sharing your story, Joan. My youngest son has Tourette’s. He was diagnosed in grade six. He’s now in 4th year university and is doing so well. It’s reassuring to me how you have been able to live a full life!

    1. Michelle, thank you for sharing your story. Today I would not call TS a disability, but an altered ability. I suspect you have some altered abilities you did not share, other than your successes. Obviously you are a very competent and successful caregiver.

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