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Living With and Learning from Tourette Syndrome

This essay was submitted with a runner-up recipient application for the 2019 NJCTS Scholarship Award. 

My twin brother Will and I were both diagnosed with Tourette Syndrome (TS) at age 10. My symptoms manifested in many ways from coughing and eye blinking to body twitching and head turning. I would do these actions vigorously and repeatedly, especially when under stress or focusing intensely. In class, for instance, I would expend tremendous mental energy suppressing these tics in order not to bring attention to my condition and I would return home literally exhausted physically and mentally. The good news was that at home I could indulge my tics as needed, but the bad news was that doing this (ticing habitually) was enormously distracting and grew painful after doing four to five hours of homework on an average night — I would end up having to wear a heated neck sleeve to help me fall asleep at night. As this continued through my years at Delbarton, my parents actually encouraged me several times to drop my sophomore and junior year AP courses so that I could better manage my workload, physical energy, and sleep. But as someone who always had Tourettes, I didn’t really know differently nor was I aware of how debilitating these tics were and the full impact they were having on my life and schoolwork.

I remember when my neurologist told me that TS and its symptoms could decrease through adolescence. It was this hopeful news that started me reading more about TS in the medical literature and this, in turn, alerted me to the Ts communities that existed locally like the New Jersey Center for Tourette Syndrome (NJCTS). The good news is that my TS symptoms have subsided significantly since late spring of my junior year and have allowed me a degree of academic focus and energy I was simply not accustomed to in my earlier high school career.

I have always been proud of not letting my TS define me or limit me. And right now, I feel like the pieces are coming today for me like never before and that my most recent record of achievement reflects this — from Highest Honors in the classroom since September, All-State recognition as a soccer player this past month, and my continued leadership at Delbarton as I join the Kairos retreat in three weeks. As I continue to grow into my role as a leader and student, I would be most proud if I could continue my upward stride into college, hopefully as an ambassador of the NJCTS Scholarship.

 

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