This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!
“l’ve been from the bottom of the deepest and darkest abyss, to the top of the highest and brightest mountain” (from the book “Against Medical Advice” by fames Patterson and Hal Freidman). This quote is a great description of what it has been like living with Tourette Syndrome for most of my life.
Since my diagnosis at the age of 3, my TS has caused me much trouble, stress, and difficulty, TS has caused me to be bullied, to get in trouble at school, and to have an almost impossible time focusing. Good behavior? Sitting still? Forget it! TS didn’t allow me to have it.
Tourette Syndrome changed my life by teaching me how to persevere and overcome very painful (almost torturous) life obstacles. My tics were very disruptive and painful for most of my childhood and early teens. For example, I would bite my thumb, my neck would twitch constantly, and I would scream in the middle of class. My muscles would become exhausted, would ache, and would cause me continuous physical pain.
My sleep was impacted due to the muscle pain, tics, and exhaustion. I would lay awake at night crying because I couldn’t sleep or was in pain. When I began taking medication as a young child, I had negative side effects such as extreme drowsiness, weight gain, increased appetite, and loss of memory. I also struggled with OCD, which played a big role in making the TS worse because I would feel the need to continue certain tics after the initial tic urge went away.
Along with the physical pain, TS hurt my social life.
I had no friends. Kids. would not talk to me, I was bullied. I was afraid to talk to other kids for fear of being teased, I felt like the monster in the school. I was depressed, anxious, and constantly hyper, In sixth grade, I left public school and began attending a smaller school to get more support. Over the next six years, I went from the bottom of the abyss to the top of the mountain.
In high school I did well. Each year I grew a little bit more mentally and physically. My tics improved as each year went by. Throughout high school I received helpful medical treatment, and worked on coping skills in school. Hallfway through this school year (my senior year) I ceased taking medication and have been able to manage myself well. Luckily I happen to have a case of TS that improved as I got older, Now at age 18, I am happy to report that my tics are basically unnoticeable, I no longer experience physical pain or problems sleeping.
TS has taught me to be careful about how I handle social situations for fear of being teased about having TS. In the past, I tended to tell everyone I met my whole life story. After all these years with TS, I have learned to have patience, slow down, and think before I speak. I am comfortable talking about my experiences with someone I know and trust, but when meeting new people, I will now hold back personal, information.
TS has molded me into a confidant college bound young adult. It makes feel strong, tough, and proud that I overcame so many obstacles. I am now confident in my abilities, and my future because I conquered the TS “monster.” After living with TS for all these years, I wake up each day feeling that I can accomplish anything.