We’ve all had moments in life when we feel slightly out of control — that no matter how hard we try to hold our focus and concentrate — things slip past us. I remember the exact moment I discovered that my lack of control had a name. I was 17-years-old and had snuck into my sister’s bedroom to read one of her magazines. I chose a random article written by Neve Campbell, an actress made famous by the Scream movies.
As I read her story, I couldn’t help but recognize exactly what she was describing. She wrote of her battle with the public’s perception of her little brother who was diagnosed with Tourette Syndrome. He would twitch and clear his throat. She called them “tics.” I had never heard this description of the syndrome before. As far as I knew, Tourette’s was an uncontrollable cursing fit. It turned out, I was wrong, and apparently so is most of America. Not only was I wrong about knowing what it was, it was from that article that I discovered my lack of control was called Tourette Syndrome.
It started when I was about 5 or 6 with eye blinking. Not just normal eye blinking, but violent eye blinking. Then came the nose twitch, the finger rubbing, the shoulder hunching, the neck stretching, the facial grimaces, the eye rolling, the throat clearing, the humming, and finally, the worst one to date, Palilalia, or the echoing of one’s own spoken words. Basically I would repeat myself, constantly. It doesn’t seem like it could be that bad, but imagine being a freshman in high school and needing the acceptance of your peers. Eventually I just stopped talking until it went away. That was one of the hardest parts, waiting for the itch to stop. Sometimes it was months, sometimes years, and sometimes, never.
I tried to control the itch, to suppress the signal coming from my brain to my muscles. I didn’t know what was wrong with me. Was I crazy? Was I sick? Why didn’t other kids have the same urge to hunch their shoulder? It didn’t help having my mom constantly telling me to stop. She called them mañas [mah’-nyahs], meaning bad habits in Spanish.
As soon as I finished the magazine article I ran out of my sister’s room, down the stairs, and into the kitchen. I had a new found realization; I wasn’t crazy and I needed to share this with my mom. I can remember the exact words that were exchanged that day.
“Mom! I have Tourette Syndrome! My mañas, they’re called tics.”
“Yeah, the doctor in Mexico called them tics, but he said they would go away.”
“What? Why didn’t you tell me?”
“I didn’t think you needed to know.”
Shock filled my body, “I didn’t think you needed to know.” I spent the next few months learning everything I could about Tourette Syndrome. I learned there was no cure. You could take medication, but there were side effects. I learned there are two types of tics, motor tics and vocal tics. A type of vocal tic was called Coprolalia, the involuntary swearing or speaking of inappropriate words. This was what the media had picked up and sensationalized in TV and film.
It’s been 11 years since that day in my sister’s bedroom. The doctor in Mexico was right and wrong. Most of my tics eventually went away, but some have lasted 23 years. I still twitch my nose, wink my right eye, and rub my fingers together. But now I know why.
I’ve never let my Tourette’s interfere with my life or career. I spend one week during the summer at Tourette Syndrome Camp USA. I feel the need to let other kids with Tourette’s know that just because you have Tourette’s doesn’t mean you can’t do anything you set your mind to. I would know. I am an awesome softball player, a painter, and a rocket scientist. And I’m not crazy, I just have Tourette’s.
Marleen Martinez lives in Littleton. Tourette Syndrome Awareness month is May 15 to June 15. To learn more, visit .
EDITOR’S NOTE: This is an online-only column and has not been edited.
