It was over 23 years ago that I was diagnosed with Tourette Syndrome.
I’ve learned a lot in that time. About myself, about others and most of all, that our relationship with mental health and conditions like TS is far more challenging than it should be.
My parents had a lot on their plate: jobs, managing a household and raising 3 children (one with considerable special needs), and a dozen other things needing attention when I started developing some unfamiliar behaviours. A reoccurring urge to violently shake my head was one that began to frighten them. I once became so distracted with this urge that I stopped my bicycle in the middle of the road to indulge, without paying attention to the flow of cars around me. Sometime after that we began seeing doctors and specialists and figuring out what was going on.
Tourette Syndrome is a neurological condition that essentially causes repeated involuntary movements and sounds that are referred to as “tics”. It affects everyone differently, and contrary to what you may have seen in movies, most persons affected by it do not swear uncontrollably. When present, this is called “Coprolalia“, and is better described as someone satisfying an itch rather than the threatening way it is sometimes represented in pop culture.
Tourette Syndrome was something seemingly unknown to most people and there was lots of learning for all of us to do. What was most challenging for me wasn’t necessarily my life at home or these urges (“tics”). It wasn’t that I had to live with them that caused me the most trouble, it was that I was expected to live a normal life in a world that wasn’t always going to just let it happen.
From experience, I quickly knew that each time I gave in to my tics, someone was going to notice. I knew that each time someone noticed, they were going to make choices. Were they going to pretend nothing happened? Were they going to exploit the opportunity to make a spectacle of it and lead others in a chorus of teasing and diminishment of my character? Or were they going to simply get “weirded out” and lose trust in even being near me?
Naturally, thinking about all of these things stressed me out and just fuelled more of a need to indulge my tics. Trying to hide and suppress them took a lot of energy. During the worst of it, there were probably days where I spent most of my time managing these expectations and very little on school work, engaging with friends or anything else until I finally had a moment of privacy. I was usually too exhausted to do a whole lot with those moments. As I wrote before, there were other things also happening to make my childhood difficult in ways that probably interacted with or exasperated this condition.
Making matters worse, the tics often caused me real physical pain and contributed to the exhaustion. Repetitive strain injuries, headaches and other symptoms that were the result of tics that required tensing certain muscle groups over and over again.
At times, it seemed like everything in my life, including how I physically felt, was driven by fear of how other people saw me, as well as my need to satiate these urges and tics.
When the tics would slow, I would get stressed out wondering when they were going to return and inadvertently trigger the whole pattern all over again. Everything was just a big loop.
Speaking of big loops: OCD (Obsessive Compulsive Disorder) was another element that came along with the Tourette Syndrome (as is often the case with those affected by TS). It didn’t stick with me for many years, and I can laugh about it a little bit, but it made things difficult as well.
OCD as a broad concept is so ubiquitous that nearly everyone you meet in the modern age uses it as a weakly humorous social Band-Aid to make themselves feel better about their insecurities and the mundane things they do. “I’m totally OCD about cleaning my desk, I really don’t like it when there’s stuff in my way!” – Even if I had seen this use of the term in my young years when I was affected by it, I don’t think it would have made it more acceptable to others.
Among other things, I was obsessed with patterns and patterns in my day to day activities. I didn’t always know the difference between this and tics, but there were moments where it was probably a more obnoxious display than many of the tics. One of these things that I remember vividly was my obsession with how I opened the door to the bathroom in my home. For whatever reason, I had one day decided that once I turned the knob and opened the bathroom door, it was asymmetrical and not “fair” to my left hand that my right hand had opened the door. I closed the door and opened it again with my left. This carried on for some time but evolved and became worse. Eventually I had to repeat the sequence, but let the left hand “go first” because I decided that it was also asymmetrical and not “fair” for the right hand to start the sequence by opening the door first. At that point I was opening the door 4 times before I could go in and it got worse from there because no matter what I did, one hand was always starting the sequence, and the sequence kept growing. I think my mother caught me once and didn’t know what I was doing and just told me to stop playing with the door. Like the tics, I knew I had to hide these behaviours or face scrutiny from others. It was just more for the pile of daily mental work and concentration I had to indulge.
I don’t remember when the spell of OCD was broken, I imagine it still permeated various aspects of my life for years but I think I had slowly talked myself into relaxing and letting go and the most obnoxious displays of OCD faded away.
Learning to change my behaviours was also a big part of loosening the grip that Tourette Syndrome and the tics had on my life. The stress of micromanaging the perception of others while all this was going on sort of forced me into learning that if I wanted to be accepted, I would have to do a better job of hiding my tics or disguising them.
I began bargaining with myself, telling myself if I didn’t do a certain thing, I could be permitted to do some other thing that would attract less negative attention, or I could do things that were easier to hide. (Instead of rolling my eyes upward for all to see, I could do the same thing while appearing to take a moment to rest my eyes and do the same thing with my eyes closed. “Hey you look tired” was better than “what the hell are you doing? Why did you roll your eyes at me?”)
This was incredibly difficult, took a lot of time and energy and attention from other things, and was probably just as stressful as things were before. I was still largely controlled my these tics and suffering painful strain injuries. It cracked something else open though, a confidence around others that I hadn’t had in a long time. I didn’t feel like I looked as ridiculous to others and some of the stress subsided, making it slightly easier to manage the tics.
What made the most difference though was other people treating me with dignity and respect, and the encouraging words some had for me.
I had a teacher one year who changed my life. After some years of being stuck in a cycle of being distracted, doing poorly in school, being told as much and being bummed out and worried about it, this teacher would constantly provide positive reinforcement, showing appreciation for the creative or kind things I did or telling me I was smart and why. I know it’s become fashionable to talk about how telling every kid that they’re special is somehow ruining them, but it was what I needed at the time and was always based on the observable. It was genuine reflection on things I did or was and she helped me recognize things that were an actual part of who I was, things I didn’t see when I was too obsessed with the symptoms of my condition and the perception of others. My grades shot up and I was comfortable making friends in ways I had never been before. It made everything else a lot easier. Life was never going to be easy, but it at least started to resemble what growing up was supposed to be like in my mind with healthier struggles and a self-awareness that let me navigate these things consciously rather than letting all the terrible take me wherever it was going to take me. I actually still struggle with these things from time to time, though they do not rule my life the way they once did and it doesn’t prevent my enjoyment of the wonderful life I have.
I don’t have all the answers. I’m certainly no doctor or established medical researcher. I do know a few things though about what my family and I experienced. I know that families have a lot of work on their hands without the added challenges of children with unique special needs and I do know that life can and should be easier for people experiencing conditions like Tourette Syndrome today.
I’m thankful that issues like “bullying” and mental health have been moved to the front and centre of public consciousness and discussion concerning matters affecting our communities. I know it would have made a big difference in my childhood. Talking about conditions like Tourette Syndrome go hand-in-hand with these conversations in recognizing individual stories and an ongoing objective to create inclusive environments where people can learn and become the versions of themselves that they are meant to be without constantly living in fear of others.
Through research, education and advocacy, organizations like Tourette Canada are helping families going through what mine did, helping to create safe spaces and improve quality of life for people with Tourette Syndrome.
This year I will be participating in the Trek for Tourette, Canada’s only national fundraiser in support of Tourette Syndrome. This will be the 7th annual event to take place at locations across Canada, and this will be the 2nd year it’s been held in my hometown of Sarnia, Ontario.
Please consider joining us for this event or making a contribution. Thank you.
Header photo: low quality still from a VHS tape/camcorder, biking around my backyard a few months before I was diagnosed with TS.
*Update – The Sarnia Journal was kind enough to publish a column I wrote about Tourette Syndrome, what “tics” are and why they make life challenging for young people. You can read it here: http://thesarniajournal.ca/guest-column-like-tourette-syndrome/
Thanks to all who contributed!
The event takes place on Sunday, March 29th, 2015. (see the website for Trek locations near you)
Sarnia Trek: Begin at 2pm at Canatara Park (meeting near the Children’s Animal Farm)
Please register online (https://www.donationaid.com/sarnia-trek). The local Sarnia event is also on Facebook (facebook.com/tourettesarnia) More information about the national event can be found here on Tourette Canada‘s website. FYI – If you don’t wish to participate but want to help, please consider making a donation + sponsor my participation in the Trek. Any amount will be appreciated. Link to my pledge page: