Brought to you by the students of the University of Cincinnati College of Medicine
By Stephan Dixon
Twenty years ago or so, I sat patiently on an exam table in a small pediatrician’s office tucked away on the west side of Cincinnati. Curious and surprisingly calm considering my mother’s temperament, I scanned the walls to find a jungle scene with elephants and lions with wide unblinking eyes gazing back at me. I preferred dinosaurs. The silence was periodically broken by the crinkling of the exam table paper as I shifted my weight. My mother and I waited in anticipation for an answer that would never quite satisfy us. It was 1991, I was six years old, Rick Astley had just released his third album, and Tourette’s syndrome was just starting to nudge its way into the public consciousness.
I look back on that point in my life with a mixture of nostalgia and sadness. Sure, I understood that the jerking motions and chirping noises were beyond my control, but I also remember feeling like I was doing something wrong. Throughout my life I have discovered that sudden change or stress can unleash a constant stream of tics that make ordinary tasks nearly impossible. If you must ask, yes, I am concerned for the challenges of a surgery clerkship. When my tics first appeared there was a lot of change going on in my life – a move to a new home and a big school with all new friends. Do I think I would have not had tics if none of these changes happened? Not at all. My tics were always there below the surface, just waiting to come out. Those sudden changes just coaxed them out a bit earlier.
Tourette’s syndrome, often an overwhelmingly external condition, has often been an internal struggle for me. If you ask anyone in my class they may claim to have never seen or heard me tic. Perhaps I have convinced myself that I am craftier than I truly am but I like to think that I have been able to hide my tics in plain sight. If I feel the need to grunt during lecture I just make sure it accompanies a throat clear- which happens to be one of my other tics. A lot of my “coping tics” have transformed into actual tics over the years. If I have to jerk my head I just make that a convenient time to crack my neck. If anyone has an idea for how I can mask my facial grimacing please let me know.
I joke, but I’m not ashamed of who I am. I definitely have a complex relationship with my Tourette’s. I am indebted to my Tourette’s for allowing me to develop many of my best qualities. I matured before most of my peers. I had to. I made it my mission to explain my tics to anyone who would listen and in doing so I gained confidence. I stand up for others because I know what it feels like to be unmercifully bullied. I am so thankful for what Tourette’s has given me yet I would gladly pay millions to wake up tomorrow and never tic again. From the day I walked out of my pediatrician’s office all those years ago I have been incredibly blessed to have a supportive family that has helped me take on such a hefty burden from an early age. Not every kid with Tourette’s has that support.
I recently read Front of the Class by Brad Cohen – a thoughtful account of the challenges of life with Tourette’s and how it inspired him to become an understanding and supportive teacher. Even though I have never been kicked out of restaurants or denied employment due to my Tourette’s like Mr. Cohen, my life has not been without its struggles. I have been ridiculed, stared at, imitated, ostracized and even dumped because of my tics (hard to believe, I know). I had several unpleasant encounters with doctors who didn’t know how to handle this twitchy little blonde boy who was making embarrassing noises in their waiting room. This may come across as a bit exaggerated but it’s a true glimpse of the world from the eyes of a scared little boy.
As I grew older and decided to become a doctor I hoped that one day I would have the chance to provide the care and understanding that I hadn’t received as a child. I would get my first opportunity this past summer. I was lucky enough to work with Dr. Donald Gilbert at Cincinnati Children’s Hospital, who is truly a celebrity in the world of movement disorders. I was eager to meet children and families who were just beginning their long journey with Tourette’s. On my first day shadowing in the movement disorder clinic I saw more kids with Tourette’s than I had seen in my entire life. They were just like me! I remembered how alone I felt as a child, like I was the only person in the entire world who knew what this condition felt like. But here I was, years later, surrounded. Better yet, I was in a unique position to offer wisdom and support at one of the most pivotal moments in the life of a child with Tourette’s. It would have been easy (and probably selfish) to say to every family, “I also have Tourette’s and look at how much I’ve achieved. Unlike many of those with Tourette’s I have graduated from college and not only that – I’m going to be a doctor!” Despite every cell in my body (especially those pesky “gunner cells”) urging me to blurt something out, on that first day I kept my mouth shut. Of course I still ramped up my tics just a bit hoping they would feel safe knowing someone else with Tourette’s was in the room.
A week later I saw my first opening. By this time I had begun a research study that gave me an opportunity to speak with the kids and their families one-on-one. One bright young girl had coprolalia (look it up) and constant neck and shoulder tics. She also had severe OCD and anxiety, both of which often accompany Tourette’s syndrome. She told me that she noticed a particular neck tic of mine that I do several times until it feels just right (this is a hard one to hide). “I actually have Tourette’s too,” I said without hesitation. Her eyes lit up. Questions came flowing out of her. We compared tics like most people compare scars. It was incredible. In the span of several minutes all of her anxiety had vanished. She had finally met someone like her! Before I left the room I told her, “Come to think of it, I’ve never really met someone like me!”
Each one of us has something important to offer our future patients. I can offer something to kids who can’t relinquish control over their own body. Some of us can identify with a little boy who scrapes his knee after falling off his bike. Some of us understand what a family is going through because we too have lost a parent or sibling. Some of us have gone under the knife to save our own life and now it’s on us to convince a frightened patient to do the same. Every time we enter unfamiliar territory in our medical education we tap into a lifetime of experience to find our way through it. It is far too easy to distance ourselves from our patients but as we all know, medicine is not easy. I challenge all of us as future physicians to make ourselves vulnerable to our patients. Imagine the impact if we were to reach out to someone who feels afraid and alone. I hope we realize that if the roles were reversed, we would be happy that someone reached out to us.
On connecting with patients as a medical student
Copyright © 2012 Mentis
About the Author:
Stephan Dixon is a second-year medical student