Eleven years ago: I sit, legs crossed, looking down at the brightly colored shapes and letters covering the carpet below me. I’m in my kindergarten classroom. The teacher walks through the door and abruptly stops. “Tess, are you crying again?” I squeeze my eyes shut and desperately attempt to stop the tears. My teacher stares at me. She’s disappointed, I can tell. “Do I need to call your parents again to take you home?” I nod and get up to follow her out of my classroom.
Getting home always felt good, like I was finally in a place where I could be me. My six year old self never questioned why I felt so out of place; I would just cry in my room because something felt fundamentally wrong. Five months after kindergarten began, I finally realized why. I began to hear countless adults tell me, “You have Tourette Syndrome, but don’t worry, you’re ok.” However, no matter how many times I heard these words and saw the encouraging smiles that so often came with that sentence, I was still scared. I wondered why I couldn’t finish a sentence without uncontrollably sniffing, or why I couldn’t stop blinking. I hated that I wasn’t in control of my body. I barely understood what I had been diagnosed with, and the unknown terrified me.
For six years, I hid my Tourette. I only told my closest friends and family. I relied on my parents to explain my situation to anyone else. My coping mechanisms were successful, but nevertheless untruthful. I would lie about my Tourette, telling people I just had a cold or there was something in my eye. I felt guilty about hiding who I was. I lacked the necessary skills to advocate for myself and others with Tourette.
Five years ago: I stand in my synagogue, pacing back and forth, holding a speech, my speech, tightly in my hands. I see people file into the room. I start to shake, doubting myself and the decision I have made. Hello everyone, my name is Tess Kowalski. I’m in 7th grade, and I’m here to talk to you today about a neurological condition I have, called Tourette Syndrome. I think to myself: Can I really say these words? I walk up to the front of the room. I take a deep breath. I smile and begin. I hear my voice, strong and powerful. I think: Is this really me? Am I really doing this? I am.
Present Day: I sometimes recall memories of when I gave my first talk. It’s hard to even remember that scared little girl I used to be. Now I proudly advocate for my disorder and I am not embarrassed about who I am. I want to become a voice for kids who haven’t found theirs yet. I present in classrooms to students with Tourette. I present in hospitals to doctors to share my personal struggles and story. I am finally comfortable in my own skin