For a year or so, Ryan Carey knew only two positions.
If he wasn’t standing up, he was lying down.
Carey, 18, was diagnosed with Tourette syndrome at about five years old.
Around Grade 8, he developed a tic in his hip that affected his ability to sit down.
“I spent most of my time either in bed or on my feet,” the Bishop’s Falls resident told The Central Voice recently.
“You don’t realize how much you sit down until you actually can’t.”
Tourette’s has had a profound impact on Carey’s life. Along with the hip tic came anxiety and depression. He missed both grades 8 and 9. Graduating high school was never even a consideration at one point.
Yet, here he is.
Different for everyone
Tourette syndrome is different for everyone, Carey says, explaining his doctor had never seen the tic that prevented him from sitting.
Carey doesn’t blurt out curse words, as pop culture suggests everyone with Tourette’s does.
“I do make noises and what not, from time to time – that and I whistles a lot,” he explains.
“There’s a bit of OCD (obsessive compulsive disorder) to it, too, where you’ve got to do it a certain way and a certain pattern or it don’t feel right. You’ve got to keep doing it until you’ve got it right, and then you’re fine for another second or so and then you’ve got to do it again.”
With Tourette’s, tics can come and go at will, he explained.
“I could wake up tomorrow and I could be, I don’t know, flailing my arms around,” he said, adding there’s no telling how long a particular tic might last.
“It’s always like it’s in your mind because you don’t know what’s going to be kind of next,” he said.
Looking to the future
Over time and with medication, Carey said he “adapted” to his hip tic, “for lack of a better word.”
Despite the day-to-day uncertainty of Tourette’s, he is determined to succeed.
Since reaching Grade 10, Carey has continued his education through the Newfoundland and Labrador English School District’s Centre for Distance Learning and Innovation (CDLI).
Now, a day he once never envisioned is upon him. On top of that, he’s been accepted to attend the prestigious SHAD program at Lakehead University in Ontario this summer.
Through the program, students are immersed in a one-month enrichment program concentrating on STEAM, an educational approach to learning science, technology, engineering, arts and math.
Carey is also getting ready to pursue a post-secondary education with an end goal of becoming an engineer. He likes problem solving and understanding how things work, he says. Tourette’s gave him plenty of practice on the former.
His first step will be the engineering technician program at College of the North Atlantic.
“Depending on how that goes, I can go for where I really want to get to eventually,” he said.
More about Tourette’s
Most people associate Tourette syndrome with spontaneous cursing.
That is largely a misconception, however, and only affects a very small percentage of those who have the condition.
According to Tourette Canada’s website, Tourette’s is a genetic condition. Studies show a person with the syndrome has between a five- to 15-per-cent chance of having a child, sibling or parent with the disorder.
Some research suggests prenatal, perinatal, autoimmune and environmental influences may affect the severity or symptoms, the website states, adding more work is necessary to fully understand the condition.
Tourette syndrome tics are “sudden, intermittent, repetitive, unpredictable, purposeless, nonrhythmic, involuntary movements or sounds,” the Tourette Canada website explains.
Tics involving movement are known as “motor tics.” Those that produce sound are referred to as “vocal tics” or “phonic tics.”
Tics associated with Tourette syndrome fall into two categories: simple or complex.