KANSAS CITY, Mo. (AP) — Several years ago the then-teenage Jamie Sanders posted a video of himself reading “This Time,” a poem he had written about Tourette’s syndrome, the brain condition that caused him to shake his head, snuffle and repeat certain sounds or phrases.
In the video he recalls enrolling at a new school, desperate to find acceptance. Looking into the eyes of his new sixth-grade classmates, Sanders wrote, “I see fear and then amusement, two reactions most commonly seen at a freak show, and my circus tent collapses in my head.”
But “This Time” ends on a note of affirmation: “They say I might grow out of it, but why would I want to grow out of my skin? I’m ticking like a metronome and everything is music.”
Now 23, Sanders is taking his experiences with Tourette’s and putting them to work in his acting career. He’s the lead in Kansas City Repertory Theatre’s “The Curious Incident of the Dog in the Night-Time,” the Tony Award-winning play about an teen on the autism spectrum who launches an investigation into the death of a neighbor’s pet.
In rehearsals he has wowed director Marissa Wolf, who calls Sanders’ Tourette’s “an amazing gift that allows him to understand the nuances of the role.”
The Kansas City Star reports that Sanders didn’t always regard his condition as a gift, which makes his current status as an unofficial goodwill ambassador for Tourette’s all the more remarkable.
In addition to his “This Time” video he has his own YouTube channel featuring the recurring series “What’s the Good News?” in which he humorously dissects various aspects of living with Tourette’s.
In one episode he describes what Tourette’s feels like: “Like really having to sneeze all the time, but then if you sneeze people make fun of you.”
He also dispels popular misconceptions, like the widespread belief that Tourette’s sufferers can’t help yelling profanities. The “swearing thing,” Sanders points out, afflicts only a small percentage of the Tourette’s community.
“For most of my life I’ve avoided other people with Tourette’s,” he said in a recent interview in Spencer Theatre lobby. “My symptoms got worse when I talked about it.”
In fact, stress is a major trigger for those with Tourette’s. Which begs the question: How did Sanders end up in a stressful job like acting?
Well, it’s the family business. His parents are Jay O. Sanders and Maryann Plunkett, both actors. Sanders said one of his earliest memories is of seeing his father playing Petruchio opposite Allison Janney’s Kate in a production of “The Taming of the Shrew” in Central Park.
But his parents never pushed him into acting, Sanders said. He always had an interest in the arts, attending New York’s Fiorello H. LaGuardia High School of Music & Art and Performing Arts and majoring in TV production at Boston’s Emerson College. He followed that with a year of study at the Michael Howard Studios, one of New York City’s premiere acting schools.
And here’s the weird thing. When he’s on stage, his symptoms appear to vanish.
“Unless he shares with you that he has Tourette’s, you wouldn’t know it,” says Wolf.
But Sanders knows. For him Tourette’s is a constant.
“Over time I’ve learned how to suppress the tics, but only at the cost of muscular tension,” he said. “Every time someone touches my back they say, ‘Man, you need a massage.'”
Imagine an electric current being generated in your back, and then racing down your arms and through your hands.
“I’ve mapped it over time, broken it down and developed coping mechanisms. Right now while I’m talking to you my knee is jumping beneath this table. I’m kind of like a stage magician. I use distraction so you won’t see what I’m trying to hide.”
Sanders’ Tourette’s was diagnosed when he was in the second grade.
“After 9/11, counselors began evaluating children who lived within a few blocks of the World Trade Center. I remember the interview. . I think I spent most of it spinning in the chair.”
It was good to have a name for his condition, but learning to deal with it was a long process. There is no cure.
“I got real quick with my reactions. If in the middle of talking I start showing verbal tics, I learned how to turn them into a joke. That way I wasn’t the weird guy. I was the funny guy.
“Still, you’re asking yourself, ‘Am I always going to be on the outside?'”
All of this is proving hugely useful as Sanders prepares to play Christopher, the amateur sleuth who is far more comfortable with numerical equations than the vagaries of human behavior.
“Though I’m not autistic, I have a lot in common with Christopher. I’ve had meltdowns. I see rules in the world around me that other people don’t, rules that I have to satisfy.
“In other ways Christopher is his own guy. He doesn’t tell lies. He doesn’t understand metaphor. If someone touches him, he yells.”
Christopher is the most demanding role of Sanders’ brief career (the character never leaves the stage), but while acting he’s able to suppress most Tourette’s symptoms.
“When I’m onstage all that’s gone. I’m acting, I’m performing, and that’s it. In that moment I’m so busy. On the one hand, I’m addressing the current moment, relying on the sense memory built up during rehearsals. At the same time, I’m looking ahead to the next scene, getting ready for that.
“And I’ve realized that the rhythm of well-written dialogue somehow satisfies my Tourette’s.”
There’s still a high level of stress, he said. “My tics have been worse in the last couple of weeks than they have in years.”
So be it. Sanders said he now sees his life as “a constant battle between sticking to a comforting routine and pushing the borders of my life. I don’t seek out human contact. I find it exhausting. But at the same time I love meeting and talking to people.
“I should be anti-social, but for some reason I’m not.”
And there’s a constant interior battle between the condition and Sanders’ psyche.
“Sometimes I’ll do something rude or unpleasant and I’ll ask myself: ‘Is this Tourette’s? Or am I just being a jerk?’ “
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Information from: The Kansas City Star, http://www.kcstar.com