By: Amanda Vining, Regular ContributorJune 29, 2015
When I was a young child growing up with my three younger sisters, it was normal for us to make squeaking noises that might escalate into screams or to walk with jerking arm movements. That’s because everyone in my family has Tourette’s Syndrome. I never considered any of these motor or vocal movements, called “tics,” to be unusual, because they were as basic and ingrained in my family as our inherited blonde hair and large feet.
But then I entered grade school, where I rapidly became aware that none of the other kids with whom I went to school made squeaking noises or wrinkled their noses without intending to do so. Moreover, while I was in elementary and middle school, internet videos became a phenomenon. Suddenly, there were videos of Cartman on South Park pretending to have Tourette’s and prancing around his neighborhood screaming curse words, YouTube videos of grown men shouting profanity in public places, and Saturday Night Live skits ridiculing Tourette’s in return for laughs from the audience. Furthermore, kids at school teased me for the noises I made.
I soon learned that Tourette’s was something of which to be ashamed. I associated that to have Tourette’s Syndrome was to be weird, comical, someone to be made fun of. So I began to tell people that I didn’t have Tourette’s. Because my vocal tic sounds very similar to hiccups, I would often tell people that I had “chronic hiccups” or that I got hiccups when I was nervous, stressed, or tired.
I became very skilled at covering my Tourette’s and hiding that part of me from other people.
In the summer of 2012, I was invited to be a counselor at Camp Twitch & Shout, a week-long camp specifically for children with Tourette’s Syndrome located outside of Atlanta, Georgia. I accepted, and that summer became the first time that I had ever met anyone with Tourette’s outside of my immediate family. I was surrounded by other people who made strange noises and whose bodies moved involuntarily. Everyone at Camp Twitch & Shout was proud to have tics, and I left camp that summer realizing just how beautiful Tourette’s Syndrome is.
Now I embrace my tics and the unique position I am in as someone who has Tourette’s Syndrome. I have the opportunity to teach people about Tourette’s. I understand now that the kids in my elementary school teased me because they didn’t understand why I made the noises I did. Most people only know the information that they see portrayed in popular media, such as on the jokes made on South Park and YouTube. Most people believe that Tourette’s means an endless slur of profanity, when in reality only a small percentage of people who have Tourette’s Syndrome have the subtype that incorporates profanity into their tics, called Coprolalia.
I am in the amazing position to share with others my experience and to help them learn what it is like to live with Tourette’s Syndrome.
Since fully embracing what makes me tic (literally), I have not hidden from who I am and now proudly tell people that I have Tourette’s when they ask me about the noises I make. I realize that there is nothing to be afraid of when it comes to who I am, and the benefits of embracing my tics are far greater than trying to hide any part of my beautyFULL life!
What qualities do you have that may set you apart from others? Do you or anyone you know have Tourette's? How have you embraced it? Tell us below!
Amanda lives in Austin, Texas, where she strives every day to be as BRAVE and BeautyFULL as she can be. She graduated from The University of Texas at Austin with a self-designed degree in Children’s Rights, and Duke University with a certificate in Nonprofit Management. In her spare time, Amanda can be found scouring Pinterest for her latest craft project, drinking coconut mochas in her favorite coffee shop, and advocating for sexual violence prevention on her blog, Talk About Rape (www.talkaboutrape.com.)
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