What Tourette's Has Taught Me

Posted Wed 6th Jul 2022 at 11:07
by Benjamin Sartison

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'I do wish that more people had access to the insight I’ve gained from living with the disorder'.

I’ve been living with Tourette’s Syndrome since I was about seven years old, and over the years it’s had a huge impact on how I see the world. It’s more than a set of tics that exist on the sidelines as I go through an otherwise “normal” life—it’s as much a part of how I perceive my surroundings as my eyes and ears.

For me, the disorder has provided a narrow window into the workings of my brain, and while it can be frustrating and debilitating, I’ve found that the perspective I gain from living with Tourette’s has helped me better coexist with people around me.

I’ve gone through life yipping, grunting, swearing, twisting my neck and limbs, and stuttering my way through many of my conversations. And this has brought me face-to-face with a fact that most people are only dimly aware of —that most of what my brain does, it does without my input.

This is true for everyone — most of what we do is settled before we’re even aware of it, and it just feels like we’re calling the shots as we move through life and make decisions. But thanks to Tourette’s, I receive constant, irritating reminders that my brain is working away in the background very much on its own terms.

These reminders come in the form of the aforementioned tics, and often leave me with a seriously diminished sense of autonomy. I often wonder why it is that I can’t do something as simple as sitting quietly, or uttering a sentence without adding a stream of superfluous sounds into the space between words.

Why can’t I just sit and stare straight ahead like everyone else? I often ask myself.

This lack of control over my body is frustrating, but it’s also eye opening.

Until recently I worked full time as a Streetcar (Tram) operator, and would frequently have to assist passengers suffering from severe mental illness and addiction. This could give rise to some very tense, and occasionally dangerous, situations. But I found that I often had more patience and empathy for these people as a result of my experiences with Tourette Syndrome. After all, I was receiving minute-by-minute reminders that we don’t get to choose the brain we have, and that in most cases it’s not up to us how our brain behaves. 

Almost everyone who acts in a way that is “disruptive,” or that we just don’t like is doing so because of a complex set of causes and circumstances that they didn’t ask for. This applies if that person is suffering from mental illness, but also if they just have a different set of social norms than we do. It’s easy to dismiss someone as impolite, “crazy,” or deviant because of their actions, but my Tourette’s has helped me realize how little control we have over how we act and how we appear to others.

We may be blank slates when we’re born, but we don’t get a say in what fills that slate. We’re each the result of our environments, our upbringing, and our brain chemistry, and we have control over none of these. Tourette’s serves as a constant reminder of this, and it has helped me act with empathy towards people who I otherwise would have had no patience for.

Tourette Syndrome is annoying, first and foremost. I don’t like having it, and it’s caused plenty of frustration. But it’s also been hugely valuable in helping me recognize how often people overestimate their autonomy and their ability to act with forethought and independence.

We are all the way we are because of reasons which are mostly beyond our control. Tourette Syndrome has offered me a glimpse how much of our mental machinations take place without our input, and while I certainly don’t wish that more people had Tourette Syndrome, I do wish that more people had access to the insight I’ve gained from living with the disorder. 

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