This is not something I talk about a lot. It’s not something many people talk about. In fact, the times you hear about Tourette Syndrome, it’s usually a punch line.
I have Tourette Syndrome.
This is the first time I’ve talked about the disorder in a public forum, not among friends, really putting myself out there. And it’s unsettling.
It’s not that I lied about having it or hid it from people, I just didn’t lead with it. I didn’t want to be treated differently. Yes, I have something, but most likely, so do you. Everyone has something.
So when I pitched this story – about a project called “Same Sky,” I told one of my executive producers about my connection to TS. She convinced me to tell my story.
I was really uneasy about it, for many reasons. For one, what will people think of me? Will they make fun of me? Think less of me? Judge me? These insecurities I haven’t felt since school were popping back up. If I am feeling this way – I can only imagine how kids these days feel. Hopefully me telling my story will help them.
Another reason I decided to speak up, to break down stereotypes. You know that guy screaming obscenities uncontrollably in the movies? Yeah, that’s not typical. Not all people with Tourette’s scream out profanities, that particular tic is very rare among people with TS. But, that’s one of the stereotypes people with Tourette Syndrome face. Tourette’s manifests itself in different ways. Tourette’s is a neurological disorder. It’s characterized by involuntary movements or vocalizations called tics, some yes—are vulgar. Other examples can be blinking, grunting, tapping or involuntary movements like twitching of the neck or shoulders.
Putting all those personal feelings aside, as a journalist, I’m not supposed to be “the story.” This was another concern for me – I’m supposed to observe, then report. To include yourself in a story as a reporter is just a no-no. This time though, it felt different. This time, I (*hope I*) helped humanize the story, and maybe it will inspire others, just as Daniel Derrico inspired me.
Now here’s how this all came about: I met Daniel Derrico at a conference last month for Tourette’s Syndrome. I often speak at the conventions to young adults and teenagers, teach them how to cope and encourage them that they too, can be successful.
Daniel was one of those kids who didn’t need encouragement or inspiration. You know how some teachers say their students often inspire them? That was the case here. Daniel approached me after I spoke on a panel, and told me about how he copes with TS, it’s through a project called “Same Sky.”
When you look at Daniel, you see a 19-year-old who loves music. What you don’t see, is Daniel ‘ticing’ out uncontrollably. Just a few years ago, Daniel’s tics were debilitating, so much so he couldn’t eat.
“It was something that took over my body and my mind,” says Daniel.
He was unable to go to school, eat, or function on his own. He was eventually hospitalized.
“They were painful. I mean there’s pictures mom took of my arms, friction burns. I was not eating. I got down to about 100 pounds, because my tics were so severe and they were exhausting I was losing so many calories from doing them. It really kind of broke me down.”
With therapy and medication, Daniel’s tics are now minimal.
“I still have a tongue-biting tic. I bite my tongue and I have to get that just right feeling. And then very once in a blue moon, I get this eye bugging tic.”
Finding his passion was also key to getting Tourette’s under control. That’s something most people with TS will tell you – channeling their energy into a hobby, passion or job makes a real difference. He’s right – for me as a kid, it was dance. In college, it was finding and falling in love with my major and then my career choice – journalism.
“I think that’s something very amazing and interesting with people with Tourette’s is whether you’re a newscaster like yourself, Nikki, a US World Cup goalie like Tim Howard, or a singer like David Pittman. Whenever they’re in their zone, with something they love and they’re passionate about, their tics are nonexistent.”
Daniel takes his message to schools through a program called “Same Sky.” It’s a group of like-minded, but very different people. Their goal is to teach tolerance, empathy and acceptance; because everyone has something. The performers all have something that sets them apart, whether it be Down Syndrome, Lyme disease, obsessive compulsive disorder, brain damage, fetal alcohol syndrome, anxiety, Autism, Asperger’s or depression.
The show is their way to stand out and fit in; to not live by other’s labels, instead, to live past them.
“Now a lot of people couldn’t tell by just looking at me today, but I’ve actually been through a lot in the past few years. I have Tourette Syndrome. My tics eventually got so bad that I could not even go to school, brush my teeth, shower, or barely function on my own,” Daniel says on stage as part of his performance. “I’m so blessed to be here today to share my story with you all.”
The “Same Sky” project is part of an organization called, “A Place to Be.” They have several private shows at high schools this month, and their next public performance is at the Rust Library in Leesburg on May 28.
About TS: According to the National Institutes of Health, “while Tourette’s Syndrome can be a chronic condition with symptoms lasting a lifetime, most people with the condition experience their worst tic symptoms in their early teens, with improvement occurring in the late teens and continuing into adulthood.”
Thanks for listening to my story, Daniel’s, and one that many people across the country can hopefully relate to.