What makes me tic? A personal take on Tourette syndrome

Jordan Neufeld.

Jordan Neufeld

As Vancouverites, we seem to value awareness. We prefer our sushi to be Ocean Wise, our markets to be local and organic, and our panhandlers to be collecting for Greenpeace. Yet I must confess that even I was caught unaware when Tourette Syndrome Awareness Month came to a close on June 15 this year—and I happen to be among those few who actually suffer from the disorder. As such, I feel a strong, if belated, responsibility to address the fact that nobody seems to know exactly what TS is.

I am no scientist, but like many patients living with a chronic sickness I have become sort of an amateur expert on my own condition. On top of what I’ve gathered from my own firsthand experiences, I have scavenged trivia of my rare affliction to better understand what it is that makes me tic.

I was shocked to discover that I could find no doctor—not my neurologist nor any medical specialist—who could adequately explain to me what Tourette syndrome is, and why it causes me to tic. For years, these men and women of science fed me powerful drugs, but infuriatingly they couldn’t tell me how or why the chemicals that they were pumping into me worked.

From my own research, I learned that anti-psychotics are prescribed mostly out of tradition and are categorically dangerous, but in high enough doses they do work. This is because they act like a valve on the release of dopamine in the brain. Dopamine is a neurotransmitter that seems to have something to do with rewards and incentive.

This basic evolutionary reward system that we all share may be best understood with a simple demonstration: Look around you and select any object within arm’s reach but do not pick it up. Instead, shut your eyes and try to grab the nearby object in one decisive movement. Whether your hand was grasping blindly for seconds or only an instant before making contact a familiar empty feeling of dissatisfaction persists until you succeed. At the moment that your objective is achieved your brain reacts and reinforces the success with a tiny chemical reward. Consider the effect, therefore, of a brain with too much dopamine. What would it be like to feel the reward without having done anything to release it?

This may be a possible explanation for why I feel the need to tic. It’s as if in my mind I am always just about to do something satisfying like stretch a sore muscle, but without any sore muscles to stretch. I have often heard the urge to tic described as a perpetual itch, but I find this to be an insufficient comparison. To tic is irresistible, but as strong as the impulse may be to scratch the hell out of an itchy wound, it is not hard to self-regulate and resist before risking serious injury or infection.

On the other hand, tics are not the same as muscle spasms or seizures, because to tic is somewhat intentional. For me, a jerk of the neck can be morphed into a more socially appropriate tic like a shoulder shrug, and many find that with significant effort their tics can be suppressed altogether.

Unlike an itch, however, the desire to tic doesn’t eventually fade when you stop paying attention to it. Instead it increases in intensity until the suppressed tics must be released all at once. Friends have likened me in this state to a ticking time bomb, culminating in what my wife likes to call a tic-splosion.

I propose that the experience may be more accurately compared to the ordeal of being tickled relentlessly. If you are as ticklish as I am you know that there is nothing quite so horrific as the hysteria induced by a tickle fight that has gotten out of hand, when you lose all control and your mind is filled with nothing but the need to move limbs in the most irrational manner. With concentration you can ignore fingertips lightly caressing the back of your neck for a few moments or even minutes, but eventually the uncontrollable urge to jerk your head and bend your neck away becomes too much to resist. Even after your attacker has ceased their assault, you may find yourself moving around oddly for several minutes afterwards.

This may not be a satisfactory scientific explanation of TS, but then I never claimed to be a scientist. As a patient I have learned that no one has more of a vested interest in understanding my condition than I do. If those with Tourette syndrome continue to share our personal perspectives, however few of us may actually be doctors, May 15 of next year may find our city that much more aware.

Jordan Neufeld is an illustrator and cartoonist in Vancouver.