What’s wrong with me?

The young man lived in shame for years

Seven-year-old Duncan McKinlay was excited as he and his father left Ridgetown, Ont., on the shores of Lake Erie, for a car show in Detroit one cold January day. Tall for his age, with blond hair and blue eyes, Duncan loved cars, Lego and reading.

Suddenly he felt a strange clenching in his stomach, as if he had to urinate. “Dad, I have to go,” he said. Rob McKinlay pulled over, and Duncan stood for a few minutes. But nothing happened.

You’re having fun with me,” said Rob, figuring his youngest child was just being his mischievous self.

A few minutes later, feeling his muscles clenching again, Duncan said urgently, “Now I really have to go.” Rob stopped again, and once more nothing happened. What’s going on? Duncan panicked.

That winter of 1980, Duncan hid from everyone, including his parents and older sister, other strange movements and tics he’d developed. He had no idea what was happening to him. He developed an extreme sensitivity to the tags in his clothes and seams in his socks. When he went to other kids’ houses, he couldn’t handle the excess stimulation and sometimes got into trouble, saying something inappropriate or running away. At times he felt like exploding.

His parents, who ran the McKinlay Funeral Home, which housed the family above it, were at times frustrated with their son but not really worried. His teachers said Duncan, though energetic, wasn’t aggressive; he was creative and far ahead of his peers in some areas.

Duncan, though, felt he was a misfit, and every day at school was a struggle to hide his tics. Not being able to release them was like having mosquito bites everywhere that he couldn’t scratch, so he often hid behind a shed in the schoolyard to let out the shakes and twitches. While his parents-swamped with running their expanding business-were downstairs at visitations most evenings and weekends, Duncan ran all over the house, letting out energy and tics. Or he’d hide in the bathroom, only to see his head shaking and his face twitching in the mirror. Desperate for it to stop, Duncan told himself, Every time you move, you get hit. This only made him panic that if anyone saw that he was hitting himself, they’d think he was crazy and send him away.

What no one realized, and wouldn’t for 12 painful, embarrassing years, was that Duncan was experiencing the first signs of Tourette’s syndrome (TS).

Named after the French neurologist Georges Gilles de la Tourette, who in 1885 published a study of nine cases of what he termed “Maladie des Tics,” TS is a neurochemical brain disorder that causes involuntary movements and noises. It’s been dubbed the swearing disease, even though only five to ten percent of those with TS swear involuntarily. According to Dr. Paul Sandor, who besides running a TS clinic at Toronto Western Hospital is a world-renowned researcher looking for a genetic link, the sounds emitted can be as simple as sniffing or throat clearing, and the tics may include frequent blinking, eye rolling, head, neck and shoulder jerks, or a clenched muscle like Duncan experienced in the car that winter morning.

Tics usually start in children under ten, become more pronounced at the onset of puberty and sometimes subside in adulthood. Males are roughly five times more likely than females to get TS.

The disorder is difficult to diagnose, as family doctors often mistake tics for allergies or mischievous behaviour. That’s how Duncan’s parents saw it when, as early as age four, their son was sent home from story time at the library after he began emulating a cat, purring and even licking the other kids’ faces.

Like so many other kids with TS, Duncan managed to hide it, but his parents did notice more unusual behaviour as he neared his teens. He was awkward, stumbling into cars and spilling popcorn at the movies, and he’d rant and snort-the result of suppressing tics-if upset. But Duncan also took pride in doing things perfectly (a sign of obsessive-compulsive disorder, which half of TS sufferers have)-like regularly and very carefully washing the fleet of cars his parents used in their business.

Duncan never knew when a new tic would surface. Jumping rope with a group of kids one recess in Grade 6, he felt the need to open his mouth until he felt the skin stretch. When he closed it, a girl he liked was pointing at him and laughing. From then on when he got that tic, he’d put his hand over his mouth and feign yawning.

Yet Duncan continued to do well academically, finding that when he was focused the tics lessened. By Grade 7 he had virtually memorized the Bugs Potter books and knew every Star Trek episode by heart. He isolated himself in the predictable, consistent world of TV and books for most of his spare time-usually with his hand in a bag of chips. The chubbier he got, the more kids teased him-and the more he hated himself.

At the end of a long, hot day in July 1987, Rob came upstairs to the family’s apartment and saw 13-year-old Duncan on the couch, watching TV-his usual spot. “Why don’t you go outside and ride your bike or something?” asked Rob. Duncan refused.

“I don’t understand him,” Rob said to Anita later. “I’m worried about his self-image.” They decided to send him for therapy.

The psychologist focused on Duncan’s weight gain; ever the obsessive, Duncan immediately focused on eating sensibly. When he slimmed back down, his parents were proud.

At their last session, the psychologist asked Duncan, “Is there anything else you want to talk about?”

Don’t tell him, thought Duncan. He won’t like you anymore. “No,” he said, looking at the floor.

Though he did theatre, started playing the drums and even made a couple of friends when he started at Ridgetown District High School, Duncan found his tics were becoming more difficult to suppress. In Grade 11, a clenching around his bladder started forcing him to quickly get to the bathroom, sometimes every ten minutes. One day, while he and some kids were in the cafeteria, he didn’t make it on time. Mortified, he carried his binder in front of him, but one girl noticed and pointed it out.

The teenager’s spirits had never been lower. He couldn’t confide in anyone-he didn’t know how. He spent hours fantasizing about singing in a band, a girl in the crowd swooning over his voice and falling madly in love with him. But he also had nightmares of being put in a straitjacket and thrown in a padded room.

In despair one night during his last year of high school, in 1992, Duncan took some sleeping pills and Tylenol. Believing his misery would soon be over, he said the Lord’s Prayer and fell into a deep sleep. But the next morning he groggily awoke and heard his family getting ready for the day. Those pills weren’t strong enough, he realized, crushed. For the next couple of months Duncan brooded about trying again-until a day in April changed everything.

As he sat in the kitchen eating lunch, he turned to the Ann Landers column in the newspaper. A mother was asking for tolerance and compassion for her daughter. “She might be sitting next to you at the movie theatre,” the mother wrote. “She’s the annoying one with the constant twitching, gesturing, sniffing, humming, throat clearing or clicking noises.”

Amazed, Duncan continued to read, discovering this was a neurological condition with a name: Tourette’s syndrome. His jaw dropped. There are other people like me, he thought. He showed the column to his parents, and they made a doctor’s appointment.

By November of Duncan’s first year at McMaster University in Hamilton, a neurologist finally confirmed it: Duncan had Tourette’s. There was no cure. After saying goodbye to his mother following the appointment, Duncan cried on the bus going back to campus.

Yet, after the truth had sunk in, he was relieved to know that the tics were not his fault. So he released them for the first time in front of his family on a weekend visit home: snorting, shaking his head and clearing his throat. This was the real Duncan, Anita and Rob realized, and from that point on they would have a much closer, more open relationship with him.

Now Duncan felt it was time to tell his three high-school friends. When they were over playing pool one night, Duncan made his nervous announcement. “That’s why I have these face tics,” he explained.

“That’s cool,” one said. “We’re glad that you know, but that doesn’t change anything for us.”

Seeing his friends accept him, tics and all, set Duncan free. Back at university, he came out of his shell, taking part in school activities, entertaining friends with his excellent imitations of Simpsons characters and singing in karaoke bars. He got a girlfriend, and he excelled in his courses-partly due to his obsession to study. He also educated students about TS, posting articles on his residence door.

None of this lessened his condition, but joking about it-interjecting comments like “Tic Break!” into conversations with friends-helped him cope.

By the end of his second year, Duncan had resolved to become a psychologist, and he volunteered to help a boy named Josh, the first other TS sufferer he’d ever met. With Duncan’s encouragement, Josh became comfortable with the disorder and developed newfound self-confidence. I can really help others, Duncan realized.

In second-year university, he gathered the courage to ask a professor he admired for a teaching assistant’s (TA) job. Sitting on the worn yellow reclining chair in Dick Day’s office, Duncan was nervous. And the longer the interview went on, the more he began to tic. But Day saw beneath the surface one of the brightest students he’d met-and exactly the type of person he wanted in front of others. A short time later, Day told the young man, “You’re hired.”

Duncan became one of the top-rated TAs for two years, and Day, impressed by his popularity, often stood outside the classroom observing. He isn’t standing out because of his disability, Day thought, smiling, but because he’s a good teacher.

Duncan has since earned his doctorate in psychology and, at 29, lives in Toronto, working as a psychologist under supervision with the Toronto School Board, where he helps kids with various disorders. Soon he’ll write his exams to become a registered psychologist and hopes to open his own practice. His web site about Tourette’s syndrome (www.lifesatwitch.com) gets some 5,000 hits a week from people worldwide, and as a director of the Tourette Syndrome Foundation of Canada, Duncan gives powerful speeches across Canada and the United States.

Duncan sees his huge workload as therapy. “I’ve got energy leaking out at the edges,” he explains. “Directing it means that my nemesis has become my ally.”

Still, Duncan’s tics change constantly, and a few give him serious trouble. His head shaking requires chiropractic treatment and, because painful eye gouging is causing damage to his sight, he has implemented a behavioural therapy called Habit Reversal Training (HRT): By recognizing the instant the tic will occur, he forces an incompatible movement, such as sitting on his hands. Duncan believes HRT is the most effective technique for easing tics.

Though living with TS isn’t easy, Duncan knows from experience that being open about it is best, and he helps kids with TS realize that, too. On a rainy Sunday afternoon during a workshop for kids with TS in Scarborough, “Dr. Dunc” puts at ease the group of little faces by singing, “Ol’ McDuncan has Tourette’s….” Soon, they are all laughing and talking openly about their tics.

By the time these sessions are over, the children know that tics don’t matter. And they have two things that Duncan didn’t have as a child: information and a role model to show them they can hold their heads high.

For more information, contact the Tourette Syndrome Foundation of Canada at 1-800-361-3120, or visit www.lifesatwitch.com

About Shelly Sanders

Shelly (represented by Amy Tipton, Signature Literary Agency) is the author of THE RACHEL TRILOGY--Rachel's Secret, Rachel's Promise & Rachel's Hope (Second Story Press).Rachel's Secret received a Starred Review in Booklist and was named a Notable Read from the Association of Jewish Libraries. Rachel's Hope was shortlisted for the Vine Awards for Canadian Literature in 2016. Before turning to fiction, Shelly was a freelance journalist for the Toronto Star, National Post, Maclean's, and Canadian Living.
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