Sunday, April 21, 2013

The Tourette's Effect

My husband and I were eating dinner together tonight. At a nearby table, there was about 5 kids and one woman. I thought nothing of it at first, and after several minutes of looking at the menu, we ordered our food. First they brought us our soup, which I ate very quickly because I had not eaten anything that day. After a while, they brought us our entrees, which were very tasty—but a few minutes later, I looked up from the table and a young teenager in the group near us had her phone out, pointed at me. I thought for a moment she was showing her friends (or family as the case may be) a funny picture on her phone, but not more than a couple moments after I looked her way she hid the phone under the table, ducked, and started giggling. I looked away briefly and then back at her—the phone was now pointed at me again, with more giggling coming from the girl and her friends. Now I couldn’t help but continue regularly glancing at this girl. I heard the woman in the group say something about, “maybe she’s looking at you,” followed by what must have been a lecture, and the next time I looked up the phone was nowhere to be seen.

Maybe that girl thought I was funny. Maybe it was because I’m obese. Maybe it was because I haven’t washed my hair in a couple of days. Maybe it was because I was eating my food in a way that was odd to her. Maybe it was because I was white, and she was black. Maybe it was because I was the nearest thing she could film, because no one in her group wanted to be filmed. Or maybe it was because I have Tourette’s syndrome, and she saw me tic and thought that was hilarious. I really don’t know, and maybe this girl is going to go home and post a video of me online that I may never see. Whatever the reason, and whatever happens to that video, I can’t help but feel a strong sense of déjà vu. I may not talk about it a lot on this blog, but I think it’s about time I do—the Tourette’s Effect.

I am very open about my Tourette’s, because there’s really no hiding it. I will tic sometime, and when people don’t know I have Tourette’s (or for that matter, what Tourette’s is), the disorder has the tendency to confuse them at its best, and scare them enough to offer to call an ambulance at its worst. When I do tell people I have Tourette’s, and they actually happen to know a little bit about it, there’s a common thread I notice—about 50% of these people tell me they wish they had Tourette’s so they could get away with shouting obscenities. This is the Tourette's Effect. I try not to take offense—I was asymptomatic of Tourette’s until I was almost 13, and if you had told a younger me there’s a disorder where people shout swear words, I would have probably asked you, “Where do I sign up?” But there is one thing none of those people realize, and neither did I— people with Tourette’s can be royally fucked by their disability. And more specifically, they can be royally fucked by shouting obscenities, whether voluntary or not.

Are you really great with people and think you’re a great candidate for a job in customer service? Do you like hanging around little kids? Do you have the ability to sit through a job interview and project yourself in a professional way? What if I told you having Coprolalia means you might be unable to do these things? You may think that Tourette’s being a disability means employers are legally required not to discriminate against those who have it. You’d be very wrong when it comes to Coprolalia. If employers have any reason, disability or otherwise, to think you’re not the candidate for the job, they will not hire you. In an employer’s eyes, if you shout obscenities, you are unqualified to work with people. It doesn’t matter how friendly you are or how willing you are to help your customers, what matters is that obscenities are unprofessional, and people with Coprolalia shout them uncontrollably. There’s a great deal of risk that you will offend a customer with your potty mouth.

Maybe you have children in your family that aren’t yours. Maybe your friends have children. I won’t say this is true of everyone, but if you have Coprolalia, parents will take issue with you. They don’t want their kids learning those words. When I was a teen and my Coprolalia made its first appearance, my dad made it very clear to me that I could not be around my little cousins with my Coprolalia. My choices were either to excuse myself to go outside and when I was hanging out with them, or never see my cousins again. I love my cousins, so there was no chance of me leaving them—but to think something I couldn’t help was going to make or break my relationship with them was terrifying. I since have learned that their mom doesn’t care if I tic around them, swearing or otherwise. I’m still willing to bet there are parents out there who would rather I stay away from them and their family so they can avoid me accidentally swearing in front of them.

In case you somehow still find yourself craving having Tourette’s, let me give you a glimpse into what it’s like for me to go about my daily business when my Tourette’s is really bad. The girl at the restaurant I mentioned earlier may or may not have seen me tic, because today is a “good” day for my Tourette’s so far. I did tic while there, but I managed to keep the vocal tics at a low volume and tried to not make the physical tics too obvious. She may have seen it, but as far as I could tell no one else did. What’s a bad day like?

Every eye in the room is on you. You’re screaming, flailing your arms, shrugging your shoulders, twisting your body in every which direction uncontrollably. You bang on the table, you stomp your feet, you swear, you shout some gibberish. As quickly as you can, you try to make your way to the door, just to get the eyes off of you. The stares. The people smiling at each other, whispering to their friends to look your way. You’re still ticcing, and wishing you could do what you came here to do. You make it outside, and try to collect yourself. People pass you as your continue to scream a few words on repeat, and they look at you and pick up their pace.

You spend 5 minutes outside, and then even though you’re still ticcing, you make your way back inside because there’s no sign of it stopping any time soon. You try to ignore the looks, but you can tell they’re there. After searching around for several minutes, you find what you were looking for and tic all the way to the counter. The cashier tries to act casual about the fact you’ve been causing a scene. They ring you up, give you the old “Have a nice day,” and you leave the store in a hurry. You go home for the day, and unleash the full force of your Tourette’s. Your back hurts. You bruised yourself when you started punching your leg. You scream and flail, and hope no one calls the cops on you because you’re so loud. You start to cry, wondering what you did to deserve this.

You don’t want Tourette’s, I can assure you of this. There is however, always a silver lining—because I have Tourette’s, I have the ability to experience something others can’t. Because I have Tourette’s, I can sympathize with others who deal with it. I can instantly spot when someone has it. I can know what to say to them, and that is “I have it too.” When I’m ready to be a mom, I can raise my kids to be open-minded. Should they also have Tourette’s, or any other disabilities and differences, I can teach them how important it is to love themselves, differentness and all. Last but not least, it has taught me to take the good and the bad as they come. Neither is permanent, so enjoy the good while it lasts, and when you’re down, take comfort knowing it will be good again.

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