Awareness versus self-pity. It can be a fine line.
It’s now Tourette Syndrome Awareness Month (May 15 – June 15). Past years, in commemoration of this month, I’ve dredged up one of my old blog essays portraying my struggles with Tourettes, my struggles with tics and my comorbids (those conditions that often accompany Tourettes: which for me include OCD and social anxiety). I linked my blog post to Facebook and called myself an educator. I was doing my part to spread the word.
The result: there’s a well-documented public account of what Tourettes feels like to me. I wouldn’t necessarily call this Tourettes awareness, maybe Jeff Cann awareness. Possibly a reminder that there’s someone in our midst who suffers from Tourettes; which is something, probably, that everyone already knows. And from the response I get, a handful of likes from my brother and a few friends, it’s apparent to me that no one really cares.
This year, I thought I’d try a different approach. I’d post a couple of graphics that show the depth of Tourette Syndrome. Anyone who’s read anything about Tourettes knows about the tics—which are involuntary movements and sounds. We cuss (I don’t), we bark (I don’t), we scratch our skin raw, we punch ourselves, we grunt, scrape teeth and blink incessantly (I do all of these). But do people understand what’s going on in our brains?
For me, the hard part of Tourettes isn’t exactly the tics, it’s the otherness. It’s knowing there’s something different about me. Something weird. Why does he do that? That’s what people say. Maybe not in real life, but in my head. I sit in my staff meeting at work, and I squeeze my eyes together as hard as I can. I take a morning walk around my neighborhood and I punch my thighs. And throughout the day, I scrape my bottom teeth against the back of my top teeth. My jaw constantly moving like a squirrel nibbling a nut.
The first graphic, which I posted on Facebook on May 15th shows what’s going on beneath the surface, behind the tics. All of the psychological and emotional baggage that accompanies the neurological need to make sounds and movements. I like this graphic. It comes off as scientific, wonky. It’s also accurate. Every single disorder or feeling shown in this graphic is something I’ve experienced.
The second graphic, a comic, is what I planned to post on Facebook tomorrow… and it’s what has me writing today. Scientific equals detached, objective. This one isn’t scientific, and it’s certainly not objective. While this comic tells the exact same story as the first graphic, this one feels self-pitying. But it also captures my feelings about Tourettes more accurately than anything I’ve ever written. The comorbids are my weight to bear. Something to lug around. The tics are only a symptom, an outward sign of the hard part.
It’s the self-doubt that I focus on. It sits in front of me waiting to trip me up, to spill my load. It’s real and it’s omnipresent. Those closest to me see my tics as inconsequential. Not even noticeable in my day to day life. Those around me, many of them never even realize I have Tourettes. To them, I might have eye problems or be a little twitchy. A need to clear my throat. They don’t think I’m weird.
I’ve never been teased because of Tourettes. Because my tics became serious as an adult, those around me are matured beyond teasing. People have expressed concern: especially they worry about my eyes. I was once bounced from a bar because I seemed strange and therefore intoxicated. But I’ve never been teased. However, I spend my days feeling the doubt. Doubt is a rock in front of my wheel. Something to steer around constantly. No matter how normal I seem, how those around me don’t perceive my struggles, doubt remains in my way.
This is the part of Tourettes that requires awareness. There’s a woman in my town with a much more obvious case of Tourettes than mine. I’ve seen her ticcing as she performs her job as a barista in a coffee shop. I’m sure people feel sorry for her. Her life appears to be a struggle. While others focus on her tics, which are constant and seem disruptive, I worry about what’s going on beneath the surface. I worry about her anxiety and her OCD. I worry that she wonders where she fits on the Autism Spectrum and is self-conscious about that. I worry that she is unhappy with her social connections. And while I’ve never spoken to her except to say “double espresso, please,” I worry that doubt rules her life.
Because that’s how it is for me.