This year's Miss Iowa, Mariah Cary, has Tourette syndrome like I do. Milder than mine, but still, I'm sure it has made her life much harder. I don't have anything against her; good on her for doing something notable. And the worthless things she's saying are just what's expected of you when you're a beauty pageant contestant, so that's fine too.
But an email I got from the Tourette Syndrome Association about her annoyed me.
One line particularly: "Diagnosed at eight, Mariah has never let TS get in her way."
I don't get it when I read a stupid inspiring story about a successful person with Tourette syndrome "not letting it get in his/her way." Tourette syndrome is basically designed to get in the way, that's pretty much all it does. If it isn't getting in somebody's way, then I don't understand what it's doing to them.
The email also quotes her saying:
"I am living proof that there is nothing that can stop you from achieving your goals but yourself. Tourette Syndrome does not make you 'different.' Everyone is different and unique and that is what makes life interesting. I tell myself every day, I cannot change how God made me and I would never want to. Take what you are given and make the very best of it."
The first sentence isn't Tourette syndrome–specific. and is just standard garbage that people need to stop saying to our kids so much. Do you understand how many narcissistic self-important monsters I have to deal with who are around my age because we are all told this as kids? Please, please stop.
The other sentences are similar to other things I've heard. No, you're wrong. Tourette's makes you different. Nothing isolates me more from the rest of humanity than Tourette syndrome does. I had to completely rewire my brain, getting rid of all knee-jerk reactions and instincts, just to be able to function at an inferior-but-passable level in society. I rarely encounter other people with Tourette's, and when I do, it's usually less severe or manifests itself very differently.
Unlike Miss Iowa, if I could get rid of Tourette's, I would with no hesitation. There's no pretending something is a blessing when it causes you pain and interrupts whatever you're doing every three seconds or so.
The last sentence in that quote is the only one I agree with. This is what we should be telling children with Tourette syndrome:
Tourette's sucks, so you need to work around it. It will get in your way, constantly, from the time it fully manifests in fifth grade to your final living moment, barring a remission after adolescence or the discovery of a completely effective treatment. You can still be successful, but it will be harder than if you didn't have Tourette's. It's not something to be ashamed of, but it is a bad thing and your focus should be on learning how to suppress and control it so that you can live a life that looks normal to others and is for the most part enjoyable.
1/13/13 Update: She ended up the fourth runner-up in last night's Miss America pageant. That's pretty good! While I criticized some of her rhetoric in this article, I'm still proud of her, and I do of course think it's good for children with Tourette's when notable people have the condition and are open about it.
Also I love her stance on marijuana. She doesn't think it should be used for anything other than recreational or medical use! Good for her for slipping that in there. Judging by the blog coverage of the contest, it was one of last night's more notable moments. It's so subversive and subtle!
4 comments:
I enjoyed your commentary. I agree that you cannot have Tourette's and live a completely 'normal' life (by most peoples standards). There is nothing wrong with acknowledging your struggles. I don't have TS and don't even personally know anyone with TS, but my son did develop a vocal tic when he was in 5th grade. Fortunately, it was short lived and easily remedied with a shor-term course of Clonidine. He is now in 10th grade and hasn't had any problems since, but it was very stressful during the time he had it and I was terribly concerned that he may have TS. Hopefully, what she can do with her platform though, is to make people aware that TS is not something that is voluntary and that people who have TS are not 'weird', but that it is a physical syndrome over which you have very little control. I hope she can create awareness and tolerance and understanding about this syndrome. June Kimbrough, FNP
Hi June, thank you. I'm glad your son is doing well now. I'm sure that was very stressful. I agree that it benefits children with Tourette's greatly when famous people are open about their experiences with it. I'm glad Mariah Cary is doing this.
Well said, JPG. I come from a family where my father, myself, and my two siblings have TS and my mother has a transient tic disorder, and we cover almost the whole spectrum of severity. It gladdens me to learn of more notable people being open about their TS, but I'll definitely agree that some of her statements aren't feasible with TS, and never will be in our lifetime.
Tim Howard, a US soccer player, is one of my favorite spokespeople on TS because he's open about it and is upfront about the difficulties it's caused. Jim Eisenreich is the other favorite.
Rachel, thank you, I agree. Sounds like a fun family.
Athletes are particularly good celebrity Tourette's exemplars because for kid who gets picked on, there's probably nothing that seems more "normal" and socially unimpeachable than a professional athlete. Good stuff.
Post a Comment