Senior shares story of Tourette syndrome
Marisa Iati | Tuesday, April 29, 2014
Senior Tom White finds order in disorder.
He finds it in the disorder of his Dillon Hall bedroom, where piles of socks and shoes rest by the bed, hats cluster around a plastic moose head and three broken hockey sticks adorn the wall.
He also finds it in the disorder of his Tourette syndrome, a neurological condition that causes him to move, shriek, jump or curse involuntarily.
“For years I’ve been saying, ‘Oh, I can write a book about this. I have all these funny stories.’ And I do — whether it be screaming out obscenities, screaming out things in airports,” White said. “I have all these stories and all these collections and unique experiences that radically kind of define who I am and have kind of built up the character that I have.”
The desire to share those experiences compelled White to speak at TEDxUND, a local, self-organized program related to the TED conferences, Jan. 21 in the DeBartolo Performing Arts Center.
“I’ve always been kind of fascinated by TED Talks, and I think I’m good at public speaking. It’s one of my gifts,” he said. “And the reason why I don’t get nervous is because eyes are always on me, if you think about it. … Literally, all the world’s a stage.”
In his 12-minute talk, White shared a typical day for him and argued that together, people can confront their collective vulnerability.
“The thesis of it was, yeah, whatever I have is strange and quixotic and eccentric, but simply because of that, it in no way demeans or diminishes what other people have,” White said. “Because everyone’s got their problems; everyone has their crosses to bear.”
‘A knee-jerk reaction’
Several years ago, White’s Tourette syndrome demonstrated itself in a particularly problematic manner.
“I’ve been tackled in an airport by air marshals,” White said. “I screamed out, ‘I have a bomb!’ As you can imagine, that didn’t go over that well. And I got tackled and detained for a little bit.”
In that situation and in others, White’s Tourette syndrome manifests itself in ways that are hypersensitive to specific environments, he said.
“My brain will be devious, so think about the worst possible thing you can say, slash, do, in a situation,” White said. “[For example,] you’re alone on the sidewalk with a woman — ‘I’ll kill you, I’ll rape you,’ or something like that. It tries to find the worst possible thing and match that up with the impulse to scream it.”
Yelling out potentially offensive statements in public is scary for White and for the recipients of the outbursts because White never knows how people will react, he said. He said he worries that some people might have concealed weapons or respond in other dangerous ways.
“It’s fascinating to me because I think my brain works in overload to not only think about that circumstance, but also to act as a regular person, if you will,” he said.
Some people with Tourette’s have associated problems, such as Attention deficit hyperactivity disorder or anxiety, according to the website of the Tourette Syndrome Association (TSA). White said he has Obsessive-compulsive disorder (OCD), which couples with his Tourette syndrome to make him act as “a knee-jerk reaction.”
“I have the ability to totally shut it down if I put all my energy into it, but were I to do that for … however many hours I’m awake, I’d be absolutely exhausted, simply because it’s literally like waging a war,” he said. “Imagine trying to stop yourself from blinking, trying to stop yourself from breathing, trying to stop yourself from yawning, trying to stop yourself from doing an integral process that’s gnawing away at you. It’s nearly impossible, so it’s a war that I am constantly waging with these functions.”
When he is not restraining the impulses that Tourette’s causes, White notices when people around him react to his tics.
“At Notre Dame, it’s lucky because everyone’s kind, everyone’s gracious, everyone’s humble and they act with a great deal of kindness and grace,” he said. “And that’s not every community that I’ve encountered.”
White said he uses humor to smooth over awkward circumstances. He said the quick connections that he makes because of his Tourette syndrome and OCD enable him to be witty and bitingly sarcastic.
“I often defuse the situation with humor, mockery, self-deprecation, you name it,” White said. “And that tends to work, simply because people respond to that. … If you can show that, sure, you’ve got this condition or whatever, but you’re funny, even the most introverted, terrified people will elicit a laugh, which is telling, and it’s the easiest way to defuse the situation.
“I guess, initially, [meeting new people is] tense, but once you get to know me and you kind of break down that façade and take the tics and everything in stride, then it’s humorous, then it’s interesting. It’s an insight into my mind … [and] the way I operate.”
White’s Tourette syndrome exhibits itself more at some times than at others, he said. Although he said stress and sleep deprivation increase the symptoms, he said he never can be sure when they will worsen or improve.
“There are activities that certainly defuse it — engaging conversation, in class if I’m fully invested,” White said. “I’ve played hockey since I was three years old, so 19 years now, and it never, ever manifested itself then. … I used to play piano — it never happened then — reading, writing, any sport any physical activity, watching a movie or TV show.”
In order to lessen the symptoms of his Tourette’s, White is constantly in motion. He pursues a double major in the Program of Liberal Studies and Italian, is a Hesburgh-Yusko Scholar and plays on the club hockey team. In his free time, White said, he manages a stock portfolio with his 18-year-old brother.
“I’m better when I’m active,” White said. “I’m taking 19 credits this semester. I’m trying to suck the life out of my college experience.”
‘Extending a hand’
Although scientists think Tourette’s is caused by problems in one or more parts of the brain, they are unsure of its exact causes, according to the TSA. The organization’s website stated that there currently is no cure for Tourette’s, but there are treatments to reduce the severity of tics and symptoms of related conditions.
Still, White said treatments are “like guessing games” and medical pharmaceutical companies stray away from Tourette’s research because it is unprofitable. As a result, he said, some people with the disorder struggle to function in society. He said he intended for his TEDx talk to benefit these individuals.
“I think it was necessary that I do it — not to sound pompous,” he said. ”I get emails, I get Facebook messages from people who are showing gratitude and sincerely ask for my help, and it’s kind of emotionally draining. … I think I have it bad, but I mean, suck it up — I don’t have anything compared to these people.
“So, the response has been overwhelming, and I think the outcome has been the increased need for a talk or conversation about neurological illness and the decrease in stigmatization of it. … Our society is readily able to accept amputees and other such things, people in wheelchairs and such, to our credit, but where we fall short is when we can’t accept those with non-physical injuries. I think it’s a necessary wake-up call.”
White said his family and friends get him out of bed every day, despite the difficulties of his syndrome.
“I wouldn’t wish this upon anyone at all, let alone those people without a solid base of love and support or even faith in God,” he said. “Going through this alone, I don’t think it’s possible. So, if anything, the TED Talk is just extending a hand — like, ‘Listen, you’re not going through this alone. Yeah, it might suck at times, it might be miserable, but listen, you’ve got life.’”
The compassion and selflessness of his brother particularly help White to survive the ups and downs of his Tourette syndrome, he said.
“[My brother] will go to the ends of the earth with me, and I know he’ll be my best friend for the rest of my life,” White said. “So, I mean, it’s awesome; I’m blessed. As much as it might seem to be miserable, I realize the immense amount of blessings in my life, and as a result of that, I’m able to thrive, to prosper.”