Q&A with… Michele Turk

In January 2011, Greenwich-based journalist Michele Turk’s 11-year-old son, Michael, was watching television with his younger sister Katie when he began cursing uncontrollably.
His unprovoked string of obscenities, eventually hundreds of them, continued throughout
the day. It was immediately clear to Turk the cursing wasn’t deliberate, and that Michael was just as shocked by the outbursts as his family.

Panicked, she and her husband, Dr. Russell Turk, an obstetrician and gynecologist affiliated with Stamford Hospital, suspected their son had Tourette syndrome, a neurological disorder defined by the presence of repetitive tics. Weeks later, their suspicions were confirmed by a neurologist.

In her new memoir “What Makes Him Tic?”, Turk writes poignantly about what it took for Michael and the Turk family to understand and accept his condition, treat his symptoms and ultimately thrive.

Ever the reporter, Turk, who is also the president of the Connecticut Press Club, punctuates her personal account with journalism, by including expert medical insights into the misunderstood and underdiagnosed syndrome.

We spoke in anticipation of the book’s June release, which is also Tourette Awareness Month.

Turk’s memoir will be released June 4 by Woodhall Press.

Stamford Magazine: You spent a lot of your career writing about health. When did you realize yours was a story that needed to be told? Michele Turk: Early on. After Michael was diagnosed, I started scribbling on pieces of paper that were strewn all over the house. If something was on my mind, if I had a question, if I was frustrated, I would write it down. It was therapeutic. Then, I started a journal, writing longer and longer memories. Seven or eight months in, I began a memoir writing class at the Westport Writer’s Workshop. When I started sharing my writing in class, the other students really responded. Their response made me realize there was a longer story that needed to be told.

SM: Was it difficult for you to share this, knowing your family, friends and neighbors would eventually read it?

MT: The short answer is yes. But I knew from the beginning I was not writing with those folks in mind. You’re writing for that parent that just found out their child has Tourette. You are writing for that person who is confused and upset and shocked and doesn’t know where to turn for help. It’s not worth writing a memoir if you’re not going to be honest. That’s what memoir writing is: It’s an invitation into someone’s life. Also, it’s been more than a decade and we had a happy ending. I’m not sure I would have been so forthcoming otherwise.

SM: There is a memorable episode of “Curb Your Enthusiasm” where a chef with Tourette screams obscenities. You write that kind of characterization perpetuates myths and mockery.

MT: The biggest misperception is that everyone with Tourette curses. While that was true for Michael, only about 10 percent of people with the diagnosis do. The defining thing has more to do with having some kind of tic. That tic could be something like eye blinking, facial grimaces, coughing, certain repetitive movements with the hands.

The perception is slowly changing. I think it was really important when Billie Eilish said that she has Tourette. When someone with that kind of fame and talent acknowledges their diagnosis and talks about their experiences, I think it makes an impact.

SM: Michael found playing the drums helped him manage his tics. How important is it for kids who are coping with this disorder to find something that makes them shine?

MT: It’s huge. I don’t think there was a specialist we saw who didn’t advise it. Whether it’s music or sports or photography or some kind of hobby that they love and can lean into to build their self-esteem, they need to have that. Michael did find that music eased his tics and it also gave hima community of people who were his friends and cheerleaders at the School of Rock. I can’t say enough about the people there and the way they supported him.

SM: Any advice for parents on how to advocate effectively for education accommodations?

MT: Trust your gut. You must be your child’s champion over and over again. My husband and I were lucky because we had access to resources, and we realize that a lot of people don’t. But it is important to find allies to help you navigate something that can feel really overwhelming. The Tourette Association of America [which hasa Connecticut chapter] has a lot of helpful resources. I also found a lot of support through [Westport-based] Smart Kids with Learning Disabilities.

SM: When Michael was diagnosed, there was a lot about Tourette that was a mystery. Is that changing? MT: One thing that’s changed is the thinking that Tourette is a rare disease. which is what we were told when  Michael was diagnosed. Actually, it’s not so rare. But sometimes, people don’t know they have it because of the way it presents or it’s attributed to other things. Research on Tourette is underfunded and I’m hoping the book will be part of a larger conversation because one in 50 kids has Tourette or some other kind of tic disorder.

SM: Let’s talk about that happy ending you mentioned. Michael is 25 now. How is he doing?

MT: He really blossomed in high school and went on to attend Georgetown. Shortly after graduation he went to Los Angeles, where he’s been exploring his love of food as a chef. He works at a wonderful farm-to-table restaurant and he and his girlfriend also have a cool side business, opening pop up restaurants. He has been mostly tic-free for the past ten years and is off medication. But we all understand that Tourette is a disease much like diabetes. He’ll always have it, but he has learneda lot about how to manage it. We’re grateful for that and he is, too.

Visit the Tourette Association of America at tourette.org

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