A Perspective on Understanding Tourette Syndrome

by Lindy Zhang

I was studying my anatomy notes during a long subway ride, when I noticed a man hovering directly over me. He was neither touching nor bothering me, but he stood awfully close, enough to make me feel uncomfortable. I tried to ignore him and returned to my rudimentary sketches of anatomical structures. As the train approached my stop, I packed up and waited patiently at the train doorway. The subway stalled in the middle of the tunnel due to train traffic. At this point, the man now stood across from me, looking out the opposite door window. Suddenly, a train passed us on the opposite track and he started to wave his hand intensely. His wrist became rubber and his hand flopped back and forth. He waved at the passing train and looked at it intensely. The passenger standing next to him remained unfazed by the situation. The passing train left our sight and the man finished waving. He stared out the window and waited. He made small, sharp movements with his hands and head, always in repetition, and then stared out the window again. Five minutes later, another train swooshed by our stalled train and the man waved again. Repeat. The man started pacing from door to door, unaware of anything else. He stopped by the window, turned around, walked to the other window, looked out, and repeated again. 86th Street, transfer to the downtown 6 train. I got off and the man continued on his way.

I knew immediately that the man had Tourette Syndrome (TS). It is a very complicated disorder and not very well understood. It is riddled with repetitive movements, known as tics, and an obsession for them. According to the National Tourette Syndrome Association, TS is defined by multiple motor and vocal tics lasting for more than one year [1]. Without treatment, there is no control of the disease, though most of its actions mean no harm. Patients often have difficulty explaining the strong urges for certain habits and movements. They need to do it, every single time. Have you ever been so intent on one objective that you had to fight hard to suppress the urge? After succumbing to these urges, we may explain ourselves by suggesting, “I couldn’t help it!” The fact is, we can help it and we can stop ourselves. In TS, urges become demands and there is no reasoning.

The man on the subway reminded me of the awe-inspiring story of Dr. Morton Doran. Dr. Doran is a very successful surgeon with TS. He has vocal tics and a compulsion to tap people with his hands [2]. He explains that at home, he has “full-blown” TS and taps his children on the head constantly. He also confesses that, in public, he must control these actions because culturally, it is not okay to touch other people whom we do not know. Yet, the most miraculous thing happens when he steps into the operating room: his hands are perfectly steady and his mind is completely focused. Imagine meeting your surgeon before your surgery and, between interview questions, he is yelling random phrases or tapping on all the countertops in the room. Would you feel safe under his surgical tools at the table? He is spastic and random without his medication, except for in the operation room–it’s a curious phenomenon. Nonetheless, like anyone else, you will have your reservations about trusting a surgeon with such a diagnosis.

Dr. Doran’s story, among all the other stories of TS, including the man in the subway, paints a vivid picture in my mind. TS and afflicted patients mesmerize me with their movements, thoughts, and release of urges. TS is a very expressive disorder, almost in a beautiful way that most of society does not understand, let alone accept. The truth is, when I began to watch the man on the subway, all the initial discomfort left me. I knew he had the symptoms of TS. It did not shock me that he was acting differently and disorderly. To me, this disorder allows creativity to burst out of the individual without much reserve. None of these individuals do any real harm in society and are functional day to day. They are just different.

Jessica Thom, who was diagnosed with the syndrome when she was in her twenties, sees the disorder in similar terms. She is the co-founder, with friend and colleague Matthew Pourtney, of a new not-for-profit social enterprise, Touretteshero.com [4]. The website features a thought-provoking blog recounting Jessica’s daily joys and tribulations, along with a gallery of tic-inspired artwork produced by numerous artists. It hopes to bring awareness to TS. Needless to say, patients with TS are coined “weird” and “creepy” and “non-functional in society.” Jessica recounts personal stories of hatred and annoyance from people around her. I praise her willingness to share and expose these situations.

The more we know about TS and its harmless tics, the more society may be able to see the disease differently and understand the individuals afflicted with it. When I watched the man on the subway, I thought about what other passengers thought of his reactions. The skeptic in me says that those thoughts were probably not the best. This man is different. He acts unconventionally in the subway and it may also feel as if this man is intruding on our orderly, reserved world. This is why it is of important that people like Dr. Doran and Jessica share their stories and experiences. And we should all embrace unsuppressed actions and reactions in life.

[1] http://tsa-usa.org/aMedical/whatists_cov.html

[2] http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1335737/pdf/cmaj00244-0065.pdf

[3] http://www.cdc.gov/features/TouretteAwareness/

[4] http://www.touretteshero.com/

Lindy is a native Brooklynite, a Michigan Wolverine fan, and a biochemistry fanatic. She enjoys meeting new people in cafes around the world, from Finland to Vietnam to Baltimore and beyond. Her dream is to combine her enthusiasm for medicine with her interests in understanding cultural differences and stigmas. She is working toward raising awareness and eliminating health disparities within urban communities. In her free time, Lindy plays volleyball, practices yoga, bakes cookies, and reads fictional novels. One day, she will be a physician, a medical professor, a writer, and an advocate for better change. 

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