Written By: Chris Pearson-Lead Photographer at Joni and Friends
Maybe you’ve heard that this month is Tourette Syndrome Awareness Month or maybe you haven’t, but as a person with Tourette’s I want to bring awareness to it by talking about my own journey.
So, what exactly is Tourette syndrome?Tourette syndrome is a neurological disorder characterized by involuntary tics. There are two types of tics: motor tics which are physical movements and verbal tics which are displayed in certain words, phrases, or sometimes a noise. I personally have both. Because there is no definitive proof on what causes Tourette syndrome and there isn’t a cure, having this disorder becomes something that you learn to manage.
The earliest that I can remember being aware of my tics is around age five or six when I had no control of them. When you’re younger, tics are so much more pronounced because you haven’t learned yet how to manage them. When I was young, I had two frequent motor tics where I would jump and kick my legs back or jerk my neck back really hard. I also had a couple of verbal tics, pronouncing certain words or parts of words louder than others or making a noise I made with my nose. So, you can imagine that school was hard when kids would point out my ticsand make fun of me.
I have this one memory of one of those silly group dances we used to do in grade school. You know, the ones where you learn a routine to a song and then go up to perform it in front of everyone. I remember being on stage with my group and having that compulsion to do the jump tic several times. After the performance, the rest of the guys in the group were so upset with me… they blamed me for ruining the routine. I still remember how upsetting it was to look out at the crowd of kids in the audience and seethem pointing and laughing at me.
Even though I’ve learned to manage my tics, Tourette’s is still hard to deal with on a daily basis. It is exhausting to constantly try to hide my tics or hold them in. But as I’ve grown older, I’ve become more accepting of myself. This is who I am, and I know I am not reduced to my disability.
If you or someone you know has Tourettesyndrome, please realize that you are not alone. It’s okay to feel frustrated.But don’t hide yourself away from others, open up to people in your community. You have a lot to offer! Just be you because you’re awesome!