Awareness. A teal ribbon. A buzzword, something I talk about often. Or at least I write about it. I suffer from Tourette Syndrome. A poorly understood disorder, uncurable. Stigmatized and ridiculed. So much so, that last spring, the Tourette Association of America’s entire social media campaign was Tourette: It’s not a punchline. C’mon, you might say, people cuss, it’s funny! Yes, it is… until you look at their life.
Through my blog, I tell stories. I show people what it’s like to be an adult living with Tourette. Through my blog, I’ve been noticed. The TAA emailed me last week. They want me to join a task force. I’ll help set the agenda for Tourette Awareness. I’ll bring to the table the concerns of an Adult with Tourette.
Today I read a blog post on Tic Talk (clever name). It floated a wish that everyone should spend a day in the skin of someone with Tourette. Brittney, the author, thinks people wouldn’t find it so funny anymore. Like I always do, I left a comment. Yes, that would be the start of true Tourette awareness. I went on to wonder if the stories we bloggers tell make any difference at all.
And then I went for a run. When I run, my mind wanders. Sometimes. Sometimes it just blanks out. I consider those my most effective runs. But today, it wandered, dwelled. I thought about how to measure if my Tourette Awareness posts reach anyone. If anyone learns anything from me. Here’s what I came up with:
I want you to write a blog post. For me. I’m looking for guest bloggers to write their perspective on Tourette. Your post can be about anything, so long as it’s also about Tourette. If you send it, I’ll post it, with an introduction and possibly a closing. It can be a post of compassion, or a post of confusion: A teacher once told me that it’s hard to tell when the kids with Tourette are “playing” her to get their way (a perspective I respect, by the way). You might write about frustration and annoyance: Why would someone with a compulsion to shout out the N-word several times an hour go to a movie? Or write a short story or a poem. Or a letter to the TAA asking them why they’re so uptight about the punchline thing.
If I’m going to be chiming in on Tourette Awareness, I’d like to gauge how I’m doing. So please help me out. You know I’d do the same for you. You might get some exposure, maybe a new follower, and I get an awareness perspective from someone who doesn’t have Tourette. My teenage daughter would say Win/Win.
Send posts to email@example.com.