Living with Tourette Syndrome

“Will you please be quiet?” the highly stressed-out English teacher said. The student he was kept fidgeting with his book and clearing his throat like he had something stuck in it. Sitting still was something the student was not familiar with. In high school, our class of about 30 had a session called “sustained silent reading” which lasted for about 30 minutes. During this time, everyone in the class had to sit quietly and read a book. Unfortunately, in high school I hated to read; so, this was the longest 30 minutes of my life. I usually spent this time trying to figure out new ways I could shut my eyes without the teacher knowing, but this day I was riveted on what was going to happen with this one student – my friend. After the teacher told him to be quiet, I knew it was down hill from there because after all he did have Tourettes Syndrome. I watched him as he nervously sat in his old wooden desk, fidgeting with his book, moving his eyes back and forth, clearing his throat again and again and making a couple of high pitch sounds. That was the teacher’s last straw; he gave him detention right there on the spot. This student was the only other person I knew, other than myself, who had Tourettes Syndrome.  

Tourettes Syndrome (TS) comes in many different forms from severe tics and emotional outbursts to having very little tics that are difficult to notice. For me, TS came in the form of physical tics when I was younger. In simple terms, tics are motor movements or vocalizations that an individual cannot control. The more he or she tries to control the tic the worse it gets.

I began noticing my tics in elementary school. I had so many tics that I had a hard time keeping track of them all. At first, it was a high pitch squeal that I just could not control. Every couple of minutes I would squeal in this high pitch note that I hoped no one could hear. I would go out to grocery stores or malls with my mom just squealing away in this high pitch note every couple of minutes. Of course at times I would try to control it but the urge to squeal became stronger and stronger that I just couldn’t resist it anymore. To resist would only make it worse. Whenever I tried to control these tics, it was like shaking a closed soda bottle then opening it and having all the soda come out. I would try to control the squeal in public places but when I got home or in a place where I felt safe I would just let go and squeal my head off.

My tics constantly changed, some stayed for years and others for only a couple of months. My tics included eye blinking constantly, moving my eyes side to side, breathing abnormally, nodding my head like I was saying, “what’s up?” to someone. I swear, in high school it must have looked like I was friends with everyone cause I was always nodding my head, pretending like I was saying “what’s up” to everyone. I’d say the strangest tic I had was in elementary school when I would constantly play with my tongue. I would stick it out and twirl it around with my fingers. Of course, the kids thought that it was really gross and so did I, but I couldn’t stop doing it. Don’t even ask me why I did this cause I have no clue. It was just an urge I had that I couldn’t fight.

The scariest thing about Tourretes Syndrome though is the fear – the fear that I wouldn’t be able to control my own body. There would be times when I would be at church sitting there having the urge to just jump up out of my seat, run onto the stage and just go bonkers, running and screaming like a crazy person. Of course, I never did that but it felt like I came close to doing it several times. This fear of not being able to control my body was always with me. I was even afraid of hurting someone because I would have these extreme thoughts and strong desires that just wouldn’t go away, the fear would keep me up at night and some days I didn’t know what I was going to do. Another fear I had was not being able to drive because I couldn’t control my eye movements. My eyes would move side to side a lot and I wouldn’t know how that would affect me. I’m sure it affected me all the times I played in basketball games, I would get distracted with my tics out there on the court that it would be difficult to focus at times.

So why do I share this with you? Partly because this is my story and this is an area of my life that is least noticeable right now but when I was younger had a huge impact on my life. The other reason I’m sharing this with you is because it’s easy to look at someone who has a disability, whether visible or invisible, and judge him or her. Just like my teacher who didn’t have the tolerance or patience to help his student, also my friend, who had TS but just gave him detention. I want to encourage you to have the patience, no matter what your day has been like, to look beyond someone’s disability and really try to understand what they’re going through. Allow yourself to feel what they feel, try to walk a mile in someone else’s shoes. It will probably give you a different perspective of their life.