If I Slip Away

If I Slip Away

 

The most interesting thing I’ve heard when revealing my neurological condition is, “I would never know you have Tourette Syndrome.”

I know this is because I don’t fit the image coming to people’s minds when TS is mentioned. Let me guess what your mind conjured: swearing and twitching.

I don’t swear. Okay, contextually at times, I admit. But I don’t have coprolalia. Go ahead…look it up…I will wait.

Welcome back.

Although coprolalia is the most well known symptom of Tourette Syndrome, it’s rare even in us “Touretters”, “Touretteskis”, “Tourette-infested” or “Gifted with TS” people.

How would you know, then, that I have Tourette Syndrome? Chances are, you wouldn’t. Unless I told you. And I do that now. I tell. 

You may catch me sniffing and ask if I have a cold. You may see me clenching my jaw and think I must be stressed. When I kick off my right shoe and stretch my toes until my big toe pops just right you may assume I have a cramp. I am flexing my hand just to get the kinks out. After all, I spend most of my day on a keyboard. If I really let my guard down, you will catch my oldest tic, the one that has been with me since childhood, the one that starts the whole cycle: that infernal spot where nose and lip meet but underneath, near my gums, and the irrepressible urge to “get it”…move it just right…involving the flaring of nostrils and blowing air with my lips closed like a balloon and then using my hand to flatten my nose.

Most of the time, though, you wouldn’t notice. I will give you that. Because, like most Touretters, I can let it build up. I can hold it in. I can save up all the tension building in my body and let it go in an explosion of coordinated movement practiced over many years.

And you wouldn’t notice the checking. You wouldn’t notice the disconnect between the clear picture I had just a moment ago of that stove off, that iron unplugged, that part of my body I was afraid was an indication of a dreadful disease but on further inspection is just a normal part of my body, and the picture that is tormenting me right now of ovens and irons setting fire to my house and my body succumbing to frightful illness.

 

You may notice a blank stare when you ask me a question. It’s not that I wasn’t paying attention, its just that…ok, I wasn’t paying attention. But not because I didn’t want to. I just couldn’t at that exact moment. You may notice that I touch my left hand to the counter on which my right was just resting or that I don’t wear a watch because no amount of jewellery on the opposite wrist equals the weight. You may notice that I can’t find my keys, or my glasses, or carry on a coherent conversation with you while I’m driving unless you want me to run a red light.

You may notice I slip away. At your party I may find a quiet place to stop the buzzing for just a minute. Bathrooms on second floors are the best and I will sit on the closed toilet seat and press my fingertips to my forehead and calm my prefrontal cortex that is lighting up from the overstimulation.

Because I am hyper-aware and don’t filter. The music cranks up and so does my hearing and the lights are brighter no matter if they are dimmed and the food I ate is sitting in my gut, not knowing what to do next and what the hell is poking me? Is that a tag? When did it get so hot in here and who is talking to me now? Now I’m shouting so I hear my voice within my own face and my ears have cranked up further. If you could open the door to my brain and walk around inside, you would be running down twisted corridors, taking in electricity, watching colours and shapes distort, feel the tension build in my entire body like an elastic band about to snap. Stay for a while and you will witness a tic-fest.

But you can’t access the corridors, so you will simply notice I slip away, then slip back.

I credit Tourette, at least in part, to my creativity. Heightened brain activity can be a gift.

And I credit Tourette for my compassion. The moments I feel incredibly alone have given me spaces in my heart for the bruised and the broken. When Tourette Syndrome is ugly, it is hideous. It is anxiety and panic and a dizzying void. When it is quiet, I don’t forget. And in not forgetting, I reach out.

So no, you may not notice I have Tourette Syndrome. That’s okay. If it weren’t for the few visible tics, I don’t know what doctors would have named it in me. OCD, maybe. Generalized anxiety disorder, perhaps. Depression, Panic Disorder, ADD. Unspecified mental / physiological / neurological condition.

But there are tics, and there is a family history (WOW, is there ever a family history! Mom, have we been asked to be guinea pigs, by any chance, for Tourette studies?). Maybe one day I will write a piece about the oddities in the odd aunts and uncles in this odd family of mine. So therefore, its name is Tourette Syndrome. And it resides in me. And I will tell you. Just in case I give you a blank stare or slip away at your party.

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4 Replies to “If I Slip Away”

  1. Wow Lori! You are a very complicated or should I say complex person. The part I particularly like is the room for compassion you have. I have experienced it personally. You are a wonderful person and we love you! ❤️

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