A Tiny Coiled Animal

I sit at my tiny desk, a girl of six in a first-grade classroom. My feet are clad in tennis shoes, dangling from the blonde wood chair that holds me, a thick black pencil in my hand. Twinges, like tiny pinpricks of fire, lead down my arm and into my fingers. I look at them as they slowly take on a life of their own, shaking and shaking and shaking. My fingers keep shaking out in front of me like a maniacal dance that I can’t control. Every bone encased inside the skin on my tiny fingers must shake at just the right interval or I would need to start the shaking all over again. Tension creeps into the back of my neck, at the base of my skull, and I feel it rest there like a small, coiled animal. The bell rings for recess and my process is interrupted.

I must start all over again.

I don’t know when the tics started. I do know when they ended — or at least the moment when I learned to control them. They lay in wait inside my brain, firing along nerve centers that jangled and mixed in a mash, making me do things I couldn’t conceive of on my own. Things like jumping and kicking my legs up behind me, feeling the exact angles that my legs bent at, and if not done simultaneously (as well as perfectly) would need repeated. Maybe it was shrugging my shoulders, each blade tensing until I could feel the muscles on each side flexing at the same moment, and repeating if they the motion was off. The shaking of my hands was the first thing I remember, with various others in-between that I can’t.

The anxious feeling of it, the inability to control the impulses that raged inside my central nervous system was akin to tumbling down a hill; rolling over and over while your head bounced against the ground until it was dizzy with the effort. It took concerted effort to hide what my brain compelled me to do, and a simple “stop doing that” didn’t work for something not understood.

My mom first noticed my tics, after having read a magazine article on a little-known disorder. It made her stop and think. The symptoms were the same, so she took me — article in hand — up to our local family M.D. He concurred with her that it did seem to mimic the tics I displayed. He recommended seeing a specialist.

It may have been several years later when I underwent a brain scan and evaluation by a doctor whose piercing eyes I remember distinctly. I think he looked clean through me. They placed a myriad of teeny tiny wires on my scalp, while a small needle took readings on a graph, its scratching the only sound I could hear in the room. The glue from those patches and wires wouldn’t wash out of my hair for days. An MRI was performed on my brain to make sure everything was where it needed to be. The worry and severity of what I might have never sunk in, and the flow of my life was uninterrupted. When we went back in for diagnosis it was exactly as the article my mom had read had suggested.

I was diagnosed with Tourette’s Syndrome.

This is how the disorder is described in medical terms: Tourette syndrome (TS) is a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics. The disorder is named for Dr. Georges Gilles de la Tourette, the pioneering French neurologist who in 1885 first described the condition in an 86-year-old French noblewoman.

(See source: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Tourette-Syndrome-Fact-Sheet#3231_1)

We had a name. I later learned that there weren’t a lot of facts and well-known treatments designed for Tourette’s, and it was a gray area in medical realms during that time. Mental health disorders tend to stay in gray areas until they no longer can. Very small pills soon appeared in my house, and every morning my mom would cut one in half for me to swallow with my breakfast. Haldol, a powerful anti-psychotic used to treat bipolar, mania, and hallucinations was given to me as a ten-year old to treat the disorder. It was known to quell the powerful urges of the tics that overtook me.

I don’t remember how long I took the pills. I don’t think it was for long. There is no cure for TS.

My case was not a severe one, and as I got older the symptoms lessoned. I learned that if I centered my thoughts on the base of my skull where all the urges emanated from, that I could contain them there if I focused calmly. The most noticeable tics disappeared one by one, and soon there were stretches where even I would forget that I had the disorder. There was only one tic that remained, and it was one that remains til today. I am an avid reader, and my children noticed when they were very young that when I read a book, I placed the very center of it up to my nose and inhaled. If my nose wasn’t centered directly in the middle, I would have to do it again until it was right. The tics and urges don’t allow you to do it wrong. My kids would giggle and tell me to “stop smelling my books!” and I would smile.

I believe a child’s biggest advocate are his parents, and often it is the mother who first notices anything amiss. That’s the way of things. When my son was small, I noticed him fidgeting and rotating his neck in a repeating fashion. The coiled, small animal in the cortex of my own neck fidgeted right along with him as I took moments out of my day to watch him carefully. Moments of stress or tiredness still let me feel the anxious tics I had tucked away so many years before, but that I could now control with concerted and calm effort. When he grew agitated the fidgeting grew worse, and I knew he as well had a mild case of what I had passed on to him.

I began to pick him up when it became bad, the edges of his brain rough and ragged, and sat with him, my arms around him, on a bed or the floor. I would let him lean into me, and in a soft soothing tone, would tell him to feel whatever is making him anxious. Then I would tell him to focus on it, moving it to the place in his neck that it was coming from. Then I would have him visualize it becoming smaller and smaller and smaller until it was a teeny, tiny pinprick of feeling. We would sit like that for twenty minutes until I could sense him become calm and steady. He learned to control the tics and urges young, and I never had to take him to a doctor for it. Both of us had mild cases that were controllable, and that isn’t the case for all. I always felt very fortunate to be able to say that.

It’s a misunderstood disorder, one that jokes are made readily about. Had I suffered from the more vicious case of it which included coprolalia (swearing uncontrollably), or loud vocal tics, it would have been a much harder load to bear. I most often don’t bring up that I have the disorder, even when breezy jokes are thrown around bearing its name. I should, but I don’t. Maybe speaking about it here is where I will do the talking, letting it out of the small box I keep it in between my shoulders. Every so often I let it out, where it travels down my back and into my arms, the old tension electric most often during a time of busyness or worry. I’m thankful I can wrap it slowly back up, spooling it back inside my frame where it resides, dormant yet there.

It should see the light of day, just like the many other disorders that are kept in a gray area — a sunken place — afraid to be revealed. We need to bring to light this side of medicine that is disdained and kept hidden as a dirty secret. It should be treated with the care it deserves.

Today, I expose mine to the light.