I was diagnosed with Tourette syndrome at six years old. It was a struggle both before and after the diagnosis. For people who do not know what Tourette syndrome is, it’s a neurological disorder that causes me to make loud sounds, have spasms and say or do things that I don’t mean. For example, I grew up with a tic that I rolled my eyes at people. A tic is the movement or noise that occurs when someone has Tourette syndrome. Before I was diagnosed, the eye-rolling tic was the hardest to understand. I was four years old when I started showing symptoms of Tourette syndrome. Therefore, I could not comprehend why rolling your eyes was so disrespectful. In fact, my dad yelled at me all the time because I would roll my eyes at him. I could not control it, but my dad did not seem to understand.
My mom however, knew what I was going through because Tourette syndrome is genetic, and it was going through her side of the family. Honestly, if I was born into a different family, one without Tourette syndrome, I do not know if I would make it. Tourette syndrome makes me who I am.
In kindergarten, everybody disliked the teacher. Even the kids that did not have her thought she was mean. However, before long, I got to know her and something about her made me like her a lot more than the other children did. At parent teacher conferences, my mom and dad met my first teacher, and she suggested we go see a neurologist because I had been “twitching.” That is what she called it: twitching. I remember the word she used because yes, it was a twitch, but she did not know what else to call it. Once I learned that it was not a twitch, it was a “tic,” I became religious in calling it a tic. Anyway, my parents had never heard of Tourette syndrome before, as not many people do. But my pediatric neurologist had told my mom only of the horror stories of Tourette syndrome. My mom was so frightened by these stories that once she got home she lied down and cried. To this day, I hate seeing my mom cry, especially because she was so scared by the doctor that she did not want to live with it. After all, she lived with it alone for her entire life. Her parents did not know what it was, because she would always hide it. My mom did not want that for me. So instead of leaving it as it was, my mom put me on medications to decrease my symptoms, making school, home, church…everything better for me. It was medicine after medicine up until I turned 16 years old. I think this was the hardest part because of all of the different side effects that come with every medication. One medicine, Haldol, turned me into a zombie. The next medicine, Risperdal, made me gain thirty pounds in about a year which is a lot especially for a ten year old. These side effects were horrific, and caused so many internal and external changes. But overall, I am still unique. I am my own person because I have Tourette syndrome. I do not know where I would be without it.
Growing up with Tourette syndrome is definitely a struggle, but inclusively, it has made me who I really am… My mom always tells me how compassionate I am, and that she thinks if I did not have Tourette syndrome, it would be completely different. I hate it sometimes, but my Tourette syndrome gets me through the day. At the end of the day, I know what truly makes me who I am. I do not think anybody else could have expressed the same feelings as me because everybody’s story is different, especially mine.
