| 100 per cent normal

The story of growing up with Tourette’s

For Ethan Macdonald, a psychiatric diagnosis at a young age meant homeschooling, medications, and hospitalizations. Despite facing difficult experiences as a child, he emerged with a positive outlook on life and is actively working towards a changing force in the mental health system.

In fourth grade, Ethan was diagnosed with Tourette syndrome. Tourette’s is a neurological disorder characterized by tics – sudden, rapid, and involuntary movements or vocalizations. At the time of his diagnosis, he was attending a small Christian academy where the visibility of the tics resulted in abuse and ridicule from certain classmates and teachers. “I had a tic where my head would go to the left and I had to do a test on multiplication tables, but I couldn’t look at the page for a long enough time to finish the equations in time. I was in a classroom where the teacher didn’t really understand my tics, and was rather abusive. He later apologized – but he basically singled me out in front of the class.” This is when Ethan decided that he wanted to be home-schooled.

Though his tics were still an issue, homeschooling allowed him to study what he wanted to, while being free of the difficulties he faced in the classroom. After a year Ethan returned to school, where he once again faced abuse – this time both emotional and physical. The misunderstanding of his tics led to public ridicule and physical retaliation behind closed doors.

At the time of diagnosis, Ethan was told he would have his tics for life. For the first few years, Ethan remembers that he was seeing a pediatrician “whose notion of treatment was mostly pharmaceuticals.” Though the tics were not debilitating, the feeling of being isolated caused depression, and he was initially put on Zoloft, an antidepressant. After three weeks on the drug, he had his first episode of what he called “losing control.” The medication continued for five years, during which he was hospitalized with medication related emergencies several times. “If I look at [the doctor’s] notes, it literally says, ‘Ethan is about 75 per cent normal, or 50 per cent normal, or 25 per cent normal.’ He had this arbitrary scale of normal, and I could never figure it out or live up to it.”

Ethan’s medication schedule became an endless loop, which frequently resulted in more pharmaceuticals. “Sometimes my parents and I would go with a really good review and I’d come out with more medication. I was diagnosed with Tourette’s by a psychiatrist, but under [the pediatrician’s] care, I was diagnosed with ADHD, OCD, oppositional defiance disorder, explosive intermittent disorder, depression. He even considered Asperger’s at one point. By the end, we didn’t know what I had.” As the diagnoses piled up, so did the pills.

From the early days of his diagnosis, Ethan turned to theatre, where he felt most comfortable. While many people in his surroundings did not understand or accept his tics, he felt that theatre was a place where he could express himself and be accepted. “Even with my diagnoses, I’ve always been quite a functional person … even as a young kid I was doing a lot of theatre. Interesting enough, on stage, I didn’t have tics.”

In seventh grade, Ethan went to public school for the first time – something he had been previously told he would never be able to do. This school experience was a significant improvement over his last, until a mistiming of medication led to a meltdown, and landed him in solitary confinement. “It was interesting, being in solitary confinement as a 12 year old kid. It definitely changes your perspective on the world you live in,” he remembered. “One thing to note is that when you are hospitalized you lose pretty much any legal rights.” During his time in solitary confinement, he was not allowed to see friends or family, and would be forcibly injected with medications, some of which caused terrible adverse reactions – including paralysis of his whole upper body. After leaving solitary confinement, he spent the remainder of his time in the pediatric ward of the hospital.

The return to middle school after hospitalization was difficult. Rumors had circulated, and the bullying meant a return to home-schooling. The tics were not the only thing Ethan was dealing with in middle school – not only did he come out as gay in eighth grade, but the medications caused his weight to increase to over 200 pounds. “A funny thing is, it was a hard time for me, but I had a wicked group of friends … it was kind of beautiful that they were accepting of me even though things were a bit weird in my life,” Ethan recalled. “The result of that is that the people who stuck around were really not the type that was judging.”

One notable incident marked the beginning on the road to a drug-free life. His mother had accidently taken one of his pills – having mistaken it for her own heart medication – and fell asleep for 48 straight hours. Upon awaking she realized why it was that it was so difficult for her son to wake up for school in the morning. At the same time, his parents had gotten connected with the Tourette Syndrome Foundation of Canada – an experience that allowed the whole family to gain a new perspective by connecting with others who were in a similar situation.

And so, the long journey of weaning off the assorted drug cocktail began. Ethan’s pediatrician did not agree with the idea of taking him off the drugs, so the process was done independently of a physician. It was carried out in an extremely careful and strategic way, as many of the drugs that Ethan was taking at the time very powerful antipsychotics. With one particular antipsychotic – Risperdal – they would decrease the dosage by one eighth by cutting it into small pieces each time he had to take it. According to Ethan, his parents described this period as two weeks that were edgy, a third week of hell, and a fourth week when they got their son back.

His last days on prescription drugs were spent on an acting internship in Los Angeles. At this time he was left on only one pill every two days, and by the time he returned home, he wasn’t taking the pills at all. The nearly two year long process had ended. The return to school that year was the start of a completely changed life.

After high school, he pursued his acting career until he had a realization that he wanted to pursue work in a healthcare-related field. This desire brought him to McGill University, and into a neuroscience lab where he now studies Tourette’s, with hopes to one day help others who have similar experiences to his own. Not only is he is actively pursuing change, but he is also an advocate for psychological diverse individuals like himself.

“I feel the LGBT and psychologically diverse communities are quite parallel. They are this incredibly rich and diverse community of people and they are unseen … and I think it would be really great if at some point we’d have acceptance of people just the way they are – for those who experience extreme states, hear voices, or have emotional distress.” His desire for equality has driven him to begin the Inclusive Mental Health Collective at McGill – which he envisions as a safe space where people with shared experiences can come and build a community with one another. ‘Shared experience’ can mean a great number of things, but in Ethan’s case, it includes those who have experienced mental or emotional distress, trauma, extreme states, psychiatric diagnoses, or psychological suffering.

Ethan strives for justice for those who are psychologically diverse. Though he holds no resentment against those who caused him pain in the past, he realizes the desperate need for social justice in the mental health community.

Despite his struggles, Ethan extends an immense amount of compassion to those who hurt him throughout the darker years.