Imagine yourself as a student in a classroom with an uncontrollable urge to blurt out the word “boring” over and over again. Or in an airport — but now the word you can’t stop yourself from repeating is “bomb.” How about in a Greyhound bus and the word erupting from your mouth is “nigger”?
Such compulsions and their consequences are just part of the challenge that Marc Elliot, 23, wrestles with everyday. They are caused by Tourette Syndrome, a neurological disorder, accompanied by obsessive-compulsive disorder, which drives Elliot to involuntarily think of and say the riskiest word or phrase that he can think of in a given situation.
Elliot has experienced all of the situations described above. In fact, in the Greyhound bus incident, which occurred when he was 16, he was thrown off of the bus on his way home from camp and the police were called.
In addition to such verbal tics, some of which are insulting words and others are barking and other sounds, Tourette also causes motor tics. The most noticeable of these, at this stage, for Elliot is a reflexive facial spasm in which he repeatedly and forcefully snaps his teeth together.
Last week, on Tuesday evening, Feb. 10, the St. Louis native spoke to some 100 teens and adults at The Shul East in Bayside. His audience included teen volunteers of The Friendship Circle of Milwaukee, a Lubavitch of Wisconsin program that pairs local teens with children with special needs. The program was part of the group’s disability awareness training for its volunteers.
Telling people openly why he has tics is one of Elliot’s most effective coping strategies, he said. It is also his way of promoting tolerance in the world.
An attractive, poised and articulate young Jewish man, Elliot described the trials of life with Tourette Syndrome with humor and frankness.
He was diagnosed with the disorder at age 9 after his father read an article that described his symptoms — blinking, eye rolling and repetition of phrases — that began to manifest themselves when he was 5-years-old. Since his diagnosis, he has been treated with hypnosis, biofeedback, prescription drugs and Botox injections in his head and neck, the latter of which stopped the intense head shaking he suffered between the ages of 10 and 13.
But Tourette Syndrome is not Elliot’s only physical disability. He explained that he suffered from a severe gastrointestinal disease called Hirschsprung Disease for which the only treatment is surgery. As a result of many surgeries, he no longer has the disease, but he now has only four of the original 25 feet of large intestine the human body normally contains.
One result of this, he said, is that everything he ingests passes through his system very quickly and in a completely liquid form. Though, unlike Tourette Syndrome, the effects of this condition are not visible, Elliot said, they are much more of a challenge.
In a self-effacing and comic style, he quipped, “I might be one of the only people in this room who has his own rectal therapist.”
The subtext, throughout his presentation, was that he chooses to live his life not as a victim, but rather, as a typical 23-year-old, as much as possible, and as an advocate for himself and others with special needs.
“Overall, I lead an incredibly normal life,” Elliot said. Prior to college, he took drama classes and at Washington University, where he majored in biology, he participated in sports, belonged to a fraternity and studied in Italy.
Though it may not seem so to most who hear his story, “There have been some positive aspects” to these challenges, despite the stress they have caused, Elliot said.
The Tourette Syndrome, especially, has given him the chance to see how people react to those who are different. And he has taken the opportunity to explain that whatever people may think when they observe his symptoms, he is not retarded, crazy or someone to fear.
As Jews, he noted, we, too, are different from the majority. His central message is, don’t make assumptions about people. Accept that they have reasons for the way they behave and be tolerant.
Though he is allowed, by law, to go where he wishes, Elliot said that he does not always ask others to tolerate the noises he cannot help making.
For example, when he attends a play or a movie, he sometimes stuffs a washcloth into his mouth to muffle those sounds. Though it’s uncomfortable, he said, he needs to be tolerant of others’ needs if he expects them to tolerate his.
Elliot is taking his presentation on the road this spring and summer, and if it goes well, he may continue to speak through the summer of 2010. After that, he plans to enter medical school.
Elliot’s appearance in Milwaukee was co-sponsored by Jewish Family Services, Inc., and B’nai B’rith Youth Organization.
To see Elliot talk about his experience with Tourette Syndrome on YouTube, click here.
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