This is the first post of this kind. For one Wednesday or Friday, every month, I will post two “Getting Personal” blog posts where I give you all a taste of my personal life. This is to help you all see that, perhaps, you are not alone and that our experiences are not so dissimilar.
Tourette Syndrome has been a strange bedfellow for nearly 30 years of my life. I was diagnosed when I was 15 and never thought what impact it would have on my life. But one thing it’s brought me since day one, and every day since, is embarrassment.
Not embarrassment from strangers seeing me tic but embarrassment to myself that I couldn’t keep from ticcing. Whenever I have a severe episode, I get angry with myself for not being able to keep calm enough to not let this happen and happen in this way. Normal single tics in public don’t phase me, nor do multiple tics. But the severe ones where I’m lying on my back or stomach punching the floor and screaming with my coprolalia?
The stares get to be a bit much and the looks of concern, especially from friends and family who aren’t used to seeing me this way, increases my anger at myself which makes the episode even worse. Let’s not even talk about the numerous 911 calls some have placed, despite my protestations.
I don’t need the concern or pity. Either give me room and time to let it pass, or be proactive and understanding by giving me a pillow, rubbing my back, taking my Sound Processor and glasses off and putting them up somewhere where they won’t get broken. It seems that no matter what I said, it’s treated as a life or death emergency.
That’s not to say some haven’t done what I needed them to do in that moment. My ex fiancé, who also has TS, would rub my back. My best friend, Taneish, gave me space and made sure I had a pillow under my head. Small things like that go a long way. Even at work once, my supervisor and a coworker brought me out of the public space and back to the employee area so that I could let the episode bowl over. I will never forget any of them for helping to put my mind at ease.
Yet, I continue to learn to live with it. I mean, I fully accept that I have TS and it doesn’t really weigh down on me like it did when I was a teen. I don’t let it define me but its mark on me is indelibly evident. In ways obvious and not so obvious.
“In life, risk is part of the equation…”