It is probably a strange experience to live your life with a rare neurological disability. I don’t know anything about that but I do have Tourette syndrome. I don’t call it a disability because its not a disability, for me. More of a mild inconvenience. I feel like to call what I have a disability would be disrespectful to those who can’t walk or talk, or people with Tourettes who are unable to function in society. I on the other hand, walk among you, and you don’t have the slightest idea.
If you have only ever heard of Tourettes syndrome, but have no idea what causes it, you are not alone. The cause of Tourettes syndrome is still a complete mystery to this day! Scientists speculate that some combination of nature and nurture coalesce to cause some ‘misfiring’ of neurotransmitters like dopamine and serotonin. The result of all this is a child who develops a series of uncontrollable ‘tics’ or twitches.
I remember when my tic and I first became aquatinted. At first I didn’t even realize what I was doing was a tic. It was just something that I wanted to do. A child’s first tic appears somewhere between the ages of 2 and 15, and is 4 times more likely in boys than in girls. For me I was 7 years old.
My family had just moved for the first time, only a few towns over. My sister had just been born a year earlier, and we were outgrowing our house in the suburbs. For a 7 year old version of myself, what this meant was that we were moving to a house with a big yard, and woods. I remember this being a very fun and exciting time.
For my parents, I think this was probably a stressful time, that was not very fun. In my childhood brain, this house was perfect. For my parents, they had just moved two young children into a small, smelly, leaky, bug infested box. Anxiety was in the air, I just couldn’t smell it at the time.
Somewhere around there, I started twitching my neck back and forth. I didn’t have any concise reason for doing it, other than that doing it felt good. When I twitched my neck, I had a rhythmic pattern. I would touch each ear to my shoulder, starting with the right, and then the left. The idea of just doing one side without the other would be unthinkable.
I remember sleeping on a mattress on the floor of our new house, saying goodnight to my dad before bed, and him asking me what I was doing to my neck. I told him I didn’t know. He must have asked me to try and stop, and I must not have been able to. Knowing my mother and father, they were likely afraid I had some sort of spine eating fungal infection.
The next thing I knew I was sitting in a strange doctors office. I spoke with a kind Indian doctor. He put little nodes all over my face and chest, and ran tests. At the end I learned I had Tourettes Syndrome. He told me there was nothing wrong with me. I had a mild form of Tourettes that would likely lessen during adolescence and disappear in adulthood. The doctor told us that to resist a tic, is as difficult as resisting the urge to blink.
There were some forms of medication to treat Tourettes, but my dad opted against it. He knew I was a creative kid, and loved to write, and he was afraid the medication might change me. In this case, the doctor told us, the best way to treat it, is to no longer acknowledge it. Ignore the tic, treat it like its normal. Besides this, breathing and relaxation are the only cure.
So that is what my family did, and it worked. My parents were happy to ignore and tics I was doing as long as I wasn’t dying, and my sister was too young to notice. My summer went by, and all I remember is playing in the woods, and making friends in the neighborhood. Next year was my first year of 2nd grade in a new school.
I remember around this time my tic transitioned from a simple neck twitch, to stretching my wrists and toes simultaneously. This one also felt really good to do, and I remember curling my toes like crazy while I waited for the bus for 2nd grade. Overall this wasn’t too bad because twisting your hands and toes is something that you can pretty easily hide from your classmates.
I remember my parents telling me that if anyone brought it up, that I could explain it to my teacher, and the school nurse knew about my Tourettes. Luckily this didn’t seem to be a problem for me at the time, that is, until my tic transitioned once again, around the middle of 2nd grade. This is when my body switched from twitches to mouth sounds.
The mouth sounds have gone through many iterations over the years, and still persists to this day. Even though the sounds of the tic have differed over the years, the binding similarity is that they all involved twitching my tongue in some way, or the back of my throat. In 2nd grade my two mouth tics were that I would make a little squeak with the back of my throat, and a little fart noise with the tip of my tongue.
Now you see, the little throat squeak was not all that bad. My tic wasn’t so much about making the sound as loud as possible, but feeling the sensation that the sound made on my throat or mouth. I remember I could effortfully make a squeak at such a low frequency, it wouldn’t register to the human ear. Kids probably heard it and didn’t know what I was doing. The fart noise on the other hand. This brought me some attention.
One terrifying moment stands out in my mind. It must have been close to summer. The elementary school was hot, and at the end of the day one day, two 2nd grade teachers decided to merge our two classrooms, shut off the lights, and put on a movie. We had arranged our chairs like a tiny auditorium, and I was sitting surrounded by kids I didn’t know very well.
Other kids talked quietly and the movie was playing, so I decided this was probably a good time to let a few little fart sounds rip from my mouth. Maybe if they were subtle enough, no one would notice. I made a few little toots with my mouth.
This is when a kid I didn’t know tapped me on the shoulder. Stop doing that he told me. This sent me into panic. Telling me not to do a tic is like throwing gasoline on a match. I nervously tooted again with my mouth. The kid behind me repeated himself. Stop it! He told me! I tried to just ignore him.
I knew there was not much time left of school, and that I was able to exercise a certain amount of mental control over my tic, if I relaxed, and I concentrated. I took a deep breath. I accidentally, let out another toot. Now the kid behind me was angry. Why won’t you stop, he exclaimed!,
This got some peoples attention. Now the kids teacher came over, and asked whats going on. The kid behind me immediately ratted on me, explaining that my fart noises were distracting him.
I don’t know what possessed me to do this, but I played dumb. I just shrugged my shoulders and said I’m not doing that. His story was less believable than mine, and this teacher didn’t know about Tourettes. She told the kid behind me to settle down, and I was saved by the bell, living on to tic another day.
Over time my mouth sound tic evolved to a little hum in the back of the throat instead of a squeak, and a little thwip with my tongue, instead of a fart sound. Kind of like a lizard tasting the air. During high school my tic went away, and in college I actually forgot about it entirely. Ironically, I learned when I was 23 that my tic returns in full force, but only when I sit down to write a short story. I guess this is something I’ll just have to deal with the rest of my life.