“So, how do you feel?” The neurologist asked me.
I answered, “I don’t know.”
But the reality is, that I actually didn’t know. How could six year old me put into words what it’s like when your whole body suddenly decides to move without permission or warning? What I should have said was that it sounds like a car alarm that went on and off whenever it felt like it. Or that it feels like holding a heavy rock with an outstretched arm that you can’t set down, until you eventually have no choice but to release it. And sometimes, it even sounds like Taylor Swift’s song “This is Me Trying” playing nonstop in my head. But no, I didn’t say any of those things.
I was six years old when I was first diagnosed with Tourette’s syndrome. At the time, I didn’t fully understand what was happening to my body, and why I twitched my face so much or made such sudden movements. I had no control, and that was what was so scary about it. For the longest time, I tried to hide the fact that I had TS because I wanted to be treated “normally” so that I could fit in with everyone else. I always wondered, “Why me? Why couldn’t I just stop?” These questions spun in my head every day, but the more I tried to suppress my tics, the more impossible it seemed.
Two years later, my parents took me to see the Radio City Rockettes for the first time. I vividly remember sitting in that red velvet seat, as the curtains rose to reveal a glittering line of 36 Rockettes. I was amazed by their sharp precision. Every kick, every leap, every turn drew me into something magical. How could one move in such control so effortlessly? As a child with Tourette’s Syndrome, I longed for that same sense of control, one where I had a way to guide my body rather than it moving on its own. Later that night I couldn’t sleep because I felt that a seed was suddenly planted in my head: maybe dance could be my one thing that allowed me to be in pure control of my own body. Later that year, my mom signed me up for my first dance class. There were so many emotions rushing through my head: Excitement, joy, nervousness, confusion. I felt it all. As soon as I walked into the studio, something had changed. For the first time, I had found a place where I could move completely to my own rhythm. Every movement, step, and turn felt intentional. Dance became a way for me to reclaim control over what I thought I had lost.
I have been dancing for eight years now, and I have loved every second of it. Over the past eight years, dance has not only given me a relief to my tics, but has also taught me the importance of resilience, self confidence, and discipline. Through dance, I have learned to embrace my tics rather than fight them. Every combo, performance, and competition, has pushed me to step outside my comfort zone, challenge my limits, and embrace freedom through doing what I love. Dance has become my outlet and has helped give me a sense of stability in my life that I never thought was possible.
Sometimes, I think back to that first visit at my neurologist’s office, to the question I couldn’t answer. If I were asked today, I would have said “I feel like myself when I dance.” So if there’s one thing I’ve learned, it’s that Tourette’s Syndrome doesn’t define me, but it is a part of who I am. I no longer view it as a limitation, but see it as a part of my growth. It has led me to find my greatest passion, dance, and for that I am forever grateful.
Living with TS has been a rollercoaster. There have been moments I have felt out of place, misunderstood, and even ashamed. Yet through it all, navigating life with TS has pushed me to adapt and shaped me into the person I am today. It has taught me the importance of self-advocacy, resilience, and compassion. More than that, it has shown me that our greatest challenges can guide us towards our greatest strengths. So for anybody who has TS, the best advice I can give you is this: Embrace your uniqueness, and let it guide you towards your growth, confidence, and joy.
Jocelyn Wang is a member of the NJCTS Youth Council, and a TS Advocate and mentor.