This is a piece I wrote for the PA-Tourette Syndrome Alliance about growing up with this syndrome.
Growing up with Tourette’s was like growing up with a scarlet letter stapled to my chest. It was a stigma I wore like a badge that everyone saw but didn’t understand, including my own mother. Back in the early 90’s, Tourette’s was still a mystery to health professionals; a complex neurological enigma that even I couldn’t unravel.
I started getting tics when I was about eight years old. They started subtly, with just the occasional nose twitch or gulp. By the time I was 11, my symptoms had blossomed into a full-fledged monster that I couldn’t tame, no matter how many attempts I made to control it.
I always saw my Tourette’s as a physical thing. It was something that had taken up residency in my body, even though it was unwelcomed. To me, the syndrome was a puppeteer, contorting my face into gruesome poses and making animalistic sounds come from my mouth that were completely foreign to other little girls.
I was finally diagnosed when I was 11. I remember the trips to the doctor’s office well and the many attempts they made to medicate the monster out of me. Back then, professionals were still trying to figure out the best remedies for controlling tics and I viewed myself as a guinea pig for their experiments. Many times, the medicine would help, but the side effects were overwhelming. For a child going through puberty, the extreme physical and mental toll the different medications took on me, in addition to my own maturing body, made my adolescence an extremely difficult time in my life.
One type of prescription made me gain over 100 pounds in under a year. Another kind made me always want to sleep. I was so sick from all of the meds that my parents had to pull me out of school. I underwent extensive testing to see if the medication had negatively impacted my brain and heart. In one test, the doctors put electrodes around my head to monitor brain activity. EKGs and blood work were a routine for me. The abnormal side effects of the medication became my norm.
I blame Tourette’s for destroying my childhood the way abused kids blame their parents. It robbed me of innocence and happiness at an early age and taught me that people can be cruel to those they view as different. My peers avoided me, saw my scarlet letter embroidered on my chest and treated me like a pariah. They would mimic my tics in class, giggle at me in the hallways and move away from me if I sat next to them at lunch. I was an untouchable. I would sit with my Tourette’s in my room late at night, asking it why it had chosen to occupy my body; why it had chosen to destroy my life.
The Tourette’s instilled a fear of abandonment in me early on that I’m still dealing with today. As a teenager, I clung to people the way barnacles cling to rocks. I never wanted my friends to leave me. I could not face rejection. The fear turned into hatred that I took out on my body. My body was the enemy that had caused me so much pain. When I was a junior and senior in high school, I was hospitalized many times for suicide attempts and cutting. Nobody understood why I hurt myself. They didn’t get that I was trying to cut myself out of myself, to remove myself from the skin and the flesh that I had come to loathe.
When I was 16, my English teacher gave us an assignment to write our own autobiographies. The last chapter was where we hoped to see ourselves in 15 years. The only words I wrote in that chapter were, “I wish I will be happy.”
I am 30 years old now. I do what I love for a living. I have an amazing apartment in the city, loving and supportive friends, an adorable dog and a doting boyfriend. I have made peace with my body. My tics are few and far between now and I haven’t been on medication for my Tourette’s for more than 10 years. It’s still there, however. It will raise its ugly head when I’m nervous, or when I am alone and let my guard down. It will come back late in the night and remind me that who I was and who I am now is the same person.
My Tourette’s was both a blessing and a curse. It was my lighthouse and my albatross. It caused me so much pain, but it also taught me empathy and kindness. I am a better woman for what I have been through. I am stronger. It taught me that if I could conquer it, I could overcome anything.
It took me more than half of my life to figure out that my Tourette’s wasn’t me. Yes, it was a part of me, but it did not define me. I hope a teenager with Tourette’s reads this someday, when she is sitting alone at night with her disease. And I hope she realizes that her body is not an enemy, that this syndrome is not a monster. It is a component of her, but not the whole her. She, like I, is a girl with Tourette’s. Tourette’s isn’t the girl.