My name is Gabri, and I was diagnosed with Tourette Syndrome when I was seventeen years old. This is my story.
I have had tics since I was around the age of eight, but they were so small and unnoticeable that nothing was done about it. No one had even noticed any of my tics up until I was seventeen, when my tics all of a sudden became extreme. My tics went from subtle muscle flexing, to all out neck jerking, jumping, screaming, and much much more. When my tics started getting worse, my first instinct was to hide them away. To brush them under the rug. The only problem with that, was I didn’t know how to! My tics were so strong that it was difficult to hide. So instead, I changed my way of thinking. I decided to talk to my mother about it. Because I was a minor, I wasn’t able to go to the doctor myself. I had to have my mother take me. To get her to take me, I had to tell her about my tics, which I had wanted to keep hidden. At the time, I was a very fearful person. A lot of what if’s controlled my mind. What if she didn’t believe me? What if she thought I was crazy? What if I’m making it all up for attention? It took me a few hours to work up the courage, but I finally went to go talk to her. I explained that I had been having to make these weird movements and I was making sounds that I had a hard time stopping. She watched me, listening to everything I was saying. All of my what if’s went out the window. As I spoke, I got more and more comfortable explaining what was wrong. She decided it was best to take me to our doctor, and I was relieved. My doctor agreed that I was having tics, but didn’t know much about Tourette’s. She gave me a suspected Tourette’s diagnosis, so that I could get the help I needed at school until I could get to a neurologist. So I had talked to my mom, talked to a doctor, and was waiting for a neurologist appointment to verify our assumptions. My next challenge was telling my father. He hasn’t been in my life since I was five, so he had no idea that my tics had been happening. Sure, we talked, but like everyone else, he had never noticed my tics.
My father lived nine hours away from me, so I rarely visited. A month before my neurology appointment, I took a rare visit down to see my father. I explained to him that I was experiencing tics, and to ask me any questions he had about them. Little did I know he would question my morality.
I am a strong Christian, so my faith is very important to me. When my father, someone who is supposed to believe in me, and support me, asks if I had messed with an Ouija board, essentially calling me possessed, he showed that he did not trust my morals. That I was someone who needed healing in the wrong way.
I was so bewildered and amazed that he had asked such a thing, that I froze. After I caught my bearings, I laid it on him. I let him know that asking that was highly offensive, that even thinking such a thing as me being possessed was a horrible thing to think. Who says that to their only child? Let’s just say, that was a very bitter trip.
Some time later, our doctor referred me to a neurologist. When my neurology appointment came, I became nervous again. I struggled to fight it. I didn’t want my fear to take over my life. When we finally sat down with my neurologist, he asked me questions about my tics. What types of tics was I having? How often did they occur? How did it affect my daily life? My mother and I answered each question, anticipating his diagnosis. After an hour of talking, I was diagnosed with Tourette Syndrome.
With this new diagnosis, there was only one remaining fear. How would my friends react to my diagnosis? They had never seen me tic before, and I was again, worried about what the others may think. I told each of them one by one, and one after the other, they all accepted me. I couldn’t have been more thrilled! To have people who will support you is such a nice feeling. To know that you are loved and believed. After the incident with my father, I was worried about how everyone else would react. I thought I would have to hear about how I was possessed, or crazy, or weird. My friends proved me wrong. They showed me that there are good people in the world, ones who will love you for you.
As the mid term of my first semester of senior year in high school hit, I had to start advocating for myself more. I had to set up a 504 plan, a plan that gave me accommodations in school so that I would have the ability to learn just like everyone else. My 504 plan included various accommodations that allowed me to leave the room when I needed, extended time on tests and homework, and preferential seating.
One way I started advocating is through Instagram. I had noticed that a lot of people don’t know what Tourette’s really is. Most people think, including myself before my diagnosis and research, that Tourette’s is just a condition where you involuntarily curse or do inappropriate things. The media portrays this disorder as something funny, and the punchline of a joke. People in movies will say things like “I wish I had Tourette’s! They can curse without getting in trouble for it!”. This is incorrect, as Tourette’s is more than cursing, and we do not get “away” with saying whatever comes out as a tic. A lot of people with tics will get in trouble for saying things that they cannot control. I want to change that way of thinking. I use my Instagram page, @Tic_n_twitch, to spread awareness through memes and informative posts. Not only is my page a relatable page for those with tics, it is also to spread awareness about my and thousands of others’ condition. Through my page, I have met wonderful people from all over the world. Some from America, the UK, Denmark, Australia, India, and many more. Tourette’s is more common than most people think, and any race, sexuality, and gender can have Tourette’s.
As my senior year went on, I started to have more and more struggles; not with people, but with my own body. Imagine your own body fighting against you all day. Imagine every time you want silence, your body says no. I haven’t had hardly any time with complete peace for a year now. My tics are always making me move, or make noises. I went through a time where all I could do was cry, because I couldn’t stop my body. I couldn’t just sit still, or keep quiet. Tourette’s is a hard thing to live with, and it takes a strong person to keep going. To keep fighting. Eventually I got over my bouts of crying, my dark times, and stepped into the light. I surrounded myself with my friends, those who could distract me and keep me above water.
But the light doesn’t last forever. Eventually, the sun will set. My tics started getting worse again, and they turned on me. My tics became more violent, and in turn, painful. I began involuntarily hitting my chest, chin, thigh, nose, and head. I was hitting as hard as I could, and that would leave me with internal bruises, both on my body, and my fist.
Lucky for me, we live in a society where you can buy anything and everything with just a click of a button. Unfortunately, because there is no protective gear made specifically for Tourette’s, I have had to become creative.
First, I acquired a baseball chest guard, which protected my chest from my punches. I had to modify this chest plate by removing the straps that held it to your body, and creating new ones to fit the area I needed it to sit in. Next, after a lot of searching, I found a wrestling face mask that had a nose guard on it. This mask would kill three birds with one stone, as it protects my chin, nose, and forehead at the same time. When the mask arrived though, it wasn’t ready to use quite yet. The mask needed chin padding and a head strap to keep it in place. Thanks to my crafty aunt, this was no problem at all. She easily sewed an elastic band to the mask so that I could wear it, and created chin padding by using a bra pad insert cut to size.
With my new gear, the sun rose again. Any time my violent tics got bad, I would just use my gear, and everything was alright. As the months went by, I was thriving, I had ways to fight my tics, and my life was going good. I graduated high school with straight A’s, even with my tics, and I started my summer off with New Student Orientation at my future college. Even as my life gets better, there will always be something that gets in the way. That’s just how life is. Now my tics are again, against me. I have a new jaw tic and wrist tic where I hyperextend the joints in those areas. This has caused me to almost break my jaw and wrist multiple times. I wear a wrist brace most of the time to keep me from breaking it. This has caused a lot of pain, and all I can do is take some painkillers and hope for the best. Even as this is going on though, I don’t and won’t let it stop me. To all of my fellow ticcers, this is a message to you. Even if the people around you do not support you, even if your body is fighting against you, don’t give up. You are strong, no matter what you or anyone else thinks. You can do this, and there is a big community who has your back. To those of you without tics, I hope sharing my story shared a little insight into what someone’s life with Tourette’s can look like. Compared to most, I had it lucky. I had a mother who supported me, friends who were amazing, a good doctor, a supportive school system, and a community who never gave me looks or attacked me when I was out in public. So many of us have had awful experiences, where people, even their own families, treat them horribly, because they look a little differently than everyone else. Thank you for taking the time to read my story, and listen to what I had to say.