This is the essay I submitted to the New Jersey Center for Tourette Syndrome for their 2012 Children’s Scholarship Award contest. I hope you enjoy it! And here is my profile on the NJCTS website.
It’s hard for me to talk about my life with Tourette. For years, I shut everyone out and became enraged if my family even said that word out loud. I know my mom was always trying to help — all the times she tried to show me the stories on TV and the movies about kids with Tourette.
She’d talk about the soccer player and the drummer and other people who had my disorder and accomplished things. She’d try to introduce me to others who had Tourette, which only made me rage more because I wanted no part of it. It was always in my face growing up, and all I wanted to do was slam the door shut and never come out.
I made noises all the time. I made terrible noises such as barking like a dog and snorting like a pig. I couldn’t stop, and people noticed. Bullies made fun of me at the playground, and I never wanted to go back. My tics ruled my life growing up. I couldn’t stop moving and twitching, and I was totally aware of everything my body was doing — and all the people who could see me.
I was so angry that there was nothing I could do about it that I would rage all over my mom when I got home. She would be so nice to me, and all I would do was rage. She raised me and my brother alone and had no one to lean on, and all I would do was rage on her. Afterward, the feelings of guilt for how I treated her would eat away at me. That was my life growing up.
Even hiding inside didn’t change anything. The tics were like my shadow that followed me everywhere. And the anger made me miserable.
We tried all kids of meds and combos. Nothing really helped, and all it did was make me tired. It made me fat, tired and unmotivated. So I became the fat, tired, lazy kids who made noises, ticced all the time and had to take naps like a baby. Great — now I never wanted to leave the house.
But my mom wouldn’t have it. She wouldn’t let me hide, and she wouldn’t let Tourette rule my life. Something came over her one day, and she got really strong and started talking about Tourette at school, Little League games and school functions — everywhere we went.
She used the word Tourette in her sentences like it was any other word and went on a mission to educate everyone around us. She had the doctor change my meds until we found something that didn’t make me quite as tired, which helped a lot.
I remember one day when I was 8 or 9, we were at Burger king and my coprolalia got the best of me. I shouted out terrible swear words while we were ordering our good. I screamed at my mother that “I want a (blanking) hamburger, Susan you (curse word).” It hit the microphone and resonated through the whole restaurant. And everything went silent.
Now, when this kind of thing happened, my mom would always explain to anyone around us that I had Tourette, and it was OK. But on that day, a very rude person made a scene and yelled at my mother for “letting her son talk to her like that.” Well, my mom got MAD! I remember she answered that rude woman just as loudly saying “absolutely NOT.” She then turned to me and said, “Don’t you EVER call me that! It’s MOMMY, not Susan.”
Then she calmly turned back to the guy taking our order and said, “And you heard him, he would like a (blanking) hamburger, please.” She winked at me, and then we got our food and left! And we laughed the whole way home in the car!
We told that story to all our friends, and my mom became a hero. From that day on, I was always surrounded by this great group of boys (including my brother Nick) who helped watch out for me and protected me from bullies — just like my mom did.
Now, 10 years later, those same boys are still my best friends. I no longer feel different or embarrassed. I have Tourette, and I make noises. Big deal. I also have made honor roll at school every year and was inducted into “Who’s Who” when I was in middle school. And I watched that HBO movie my mom wanted me to see called “I have Tourette, but Tourette doesn’t have me,” and it’s true. It doesn’t have me, and it never will.