Out of respect for everyone mentioned in this story, all names have been changed.
It started with excessive blinking. It never occurred to me that what I was doing wasn’t normal until a boy on the bus started calling me granny-eyes. I was nine years old, but he said only old ladies blinked and squinted their eyes so much. I say this was where it started, but actually, my parents insist they saw the signs when I was four. They said I cleared my throat a lot while I was learning to read. They also noticed the blinking. It was the boy on the bus, however, that first drew my attention to it.
From that moment on, my view on the world changed. There was a little girl that lived in my neighbourhood named Bianca, and she rode the same bus as me and Aaron – the boy who called me granny-eyes. After I was made aware of my odd blinking, I did what any kid would do: I tried to fit in. Everyday riding to school, I fixed my gaze on Bianca, and counted her blinks. Every time she blinked, I did too. I didn’t allow myself to blink until she did. Or, I tried not to anyway. But I could never quite make my blinks match hers.
After that came the head jerking. Either I would press my chin to my chest, tilting my head as far down as it would go, or I would snap my head backwards so that the back of my head touched the top of my spinal cord. It may sound like I’m describing these movements in too much detail, but it’s important you know exactly where the movements fell because if I didn’t get them right, I had to do them again and again until I did. I just didn’t know why.
The head jerking brought notice from more people than just Aaron. One day Eva – a girl in my brother’s class – asked if I was okay. I didn’t know how to respond. I felt fine, though I was a little embarrassed by all the attention I’d been getting lately. The only problem was I couldn’t seem to stop these movements.
My mom had started questioning the movements too. She was angry at Aaron for making fun of me, but now she was also worried because the head jerks looked painful. She asked me to stop doing them because I was going to hurt myself. I didn’t know how to stop, but I also didn’t know why, so I tried to listen to her. When I couldn’t, she asked why I was doing it. I told myself they must just be a bad habit.
The next time I saw Eva, I gave her this explanation, and she offered up a solution. She said, “Pretend that you’re watching an exciting movie, and if you look down, you’ll miss the best part.” Over the next couple of weeks, I tried my best to keep my head up for the imaginary movie. Instead, I missed every single scene.
The next uncontrollable movement I developed was a noise: a high pitched hum, very similar to that of a dog whining. The reason I choose this comparison is because it’s the one my babysitter at the time chose. Her exact wording was, “Maggie, stop whining, you’re not a dog!” I felt like crying because not only was I embarrassed, but I didn’t know how to tell her that I couldn’t stop.
The next step was not a new movement or noise, but a reaction. I was sitting in class one day, when the principal appeared at the door. My French teacher – Mr. Amos – paused the class, and without the principal saying anything, looked at me and said in a tone that was very uncharacteristically gentle, “Maggie, please go with Mr. Samson. He has some questions for you.” His tone was my first clue that something was wrong. Mr. Amos was a lot of things, all of them horrible, so kind was something new.
I can still remember doing laps around the inside of the school with Mr. Samson while he asked me a bunch of questions I suppose were inevitable. I’d always been fond of him as a principal, and maybe that had a lot to do with the way he handled this day. I remember being horribly embarrassed when he asked me about the movements, and I hastened to explain that they were bad habits I was working on. Instead of scolding me, however, he told me that it would be okay. He told me that my parents weren’t mad at me, which, until that point, was something I didn’t realize I’d needed to hear. He said they were worried. He said Mr. Amos was worried, which was possibly the most surprising part of all.
As it turns out, out of everyone that had noticed my movements and written them off as behaviour or attention problems (my report cards were covered with remarks like these), Mr. Amos was the only one who spoke up out of concern for me.
Here’s the thing about Mr. Amos: I have almost nothing good to say about him. I hated him so much more than words can describe. He was so bad that he got fired. The only surprising thing about that is that it took three years. He used to tell us stories about how his sister got kidnapped while hitchhiking and never came home, or how this little girl in first grade was walking home with her best friend when she stepped into the bus lane, and got struck and killed. He consistently told us how much he hated children.
Mr. Amos was the worst teacher I’ve ever had. But I will be eternally grateful to him for one thing: he spoke up when no one else did. He noticed that something was wrong, but didn’t blame it on me. He reached out for help when I couldn’t.
After that chat with Mr. Samson, my parents made an appointment with a doctor at CHEO, who gave me my diagnosis: Tourette Syndrome, a neurological disorder characterized by involuntary and uncontrollable movements called “tics”. The blinking, the head jerks, and the high pitched hum: they were all things I couldn’t, and would never be able to control. Having this explanation was a Godsend. Because now I knew what was happening, and I knew that it wasn’t my fault.
Over the years a number of other tics have developed, some fading and some lasting. I have more than I feel like counting right now, but they don’t bother me like they used to. I used to think Tourette Syndrome was an ugly term. Now it just feels like me. It feels less like a disorder, and more like an adjective. I have red hair, I have blue eyes and I have Tourette Syndrome. It took me a long time to get to this point, but I don’t know that I’d have traded that for anything.
I’ve made it this far, haven’t I?
Maggie Kendall is a 23 year old Professional Writing Student, who used to be afraid of all things horror, but was then forced to watch Paranormal Activity, and now there’s no going back.