2017 NJCTS Youth Scholarship Award Essay: “The Same Kind of Different as Normal”

This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2017 Youth Scholarship Award contest.

Rose P.

“All the world is full of suffering. It is all so full of overcoming.” – Helen Keller.

We never think of the simple tasks we do from day to day like getting dressed, making our bed in the morning, even just writing our name on a piece of paper as difficult. These are things that normal people take for granted, but in second grade these were my biggest struggles. I was constantly losing control of my body and then gaining it back just as fast. It’s a misunderstood neurological disorder called Tourette Syndrome.

As a child I didn’t understand what was happening, why I had changed and became so different from my classmates. Why I could no longer be just as normal as they were? I could still run, jump and play. I was constantly exhausted because even when I tried to sit still, my body was in constant motion. I often had to be sent home because I was unable to sit in my chair at school when my tics became too severe. Every day I would go to bed with the desire to be “normal.” Every morning I would wake up with the hope that one day my tics would go away. The only thing was, it never happened. Through it all I began to admire Helen Keller for how she lived her life and had been able to overcome being both deaf and blind and still learned to speak and go to college. I knew that if she could overcome her differences so could I. That one day I would be able to beat my Tourette Syndrome.

Even today I may struggle doing things when I have a day with more tics than usual. I have never let my Tourette Syndrome get in the way of what I want to do in school and in life. I am able to dance, perform in plays and compete both in swimming and on my school academic team. I have come to learn and accept that being different is being normal for me. The word normal can only be defined by how you see yourself and shouldn’t be defined by how others see you. I feel that because I am not as normal as others, I am able to understand people from a different point of view. I can better understand what people go through medically and emotionally when they are unsure of what may happen next. I have also wanted to help people my entire life. As a first grader, my dream job wasn’t to be an actress or movie star like other kids my age; I wanted to be a scientist and work at St. Jude’s Children’s Hospital to help cancer patients. I didn’t even know what cancer was, but I wanted to find out and make a difference. Now, my dream job is to be a nurse at the Children’s Hospital of Philadelphia. Tourettes has never stopped me from following my dreams before, and I don’t feel that it will stop me now, either. I was able to overcome many things as a child; I still do every day of my life. Being a nurse will allow me to help the children who may be going through their hardest life challenges, whether they have cancer, or another disease or disorder. I will not only be able to help them medically, but I will be able to show them that if you are determined enough to do something, anything is possible. Just because you have a disability or disorder doesn’t mean you have to live your life as such. We all determine our own destinies in life, for me that’s beating Tourette Syndrome and becoming a nurse. Normal and different is only what you make of it. It doesn’t matter how others see you. You are your own kind of normal and that’s the best kind there is.

My Medicine of Dance

This blog post originally appeared on BrittanyFichterWrites.com.

I don’t watch Dancing with the Stars often, but when I heard that there was going to be a  Disney night, I couldn’t resist. And I was not disappointed.

I grew up dancing. It was always one of the biggest parts of my life, but I didn’t realize how much it did to improve my Tourette Syndrome, OCD tendencies and anxiety until I graduated from high school and my tics began to get worse. I’ve given it quite a lot of thought, trying to put into words what my body and soul feel when I’m dancing, attempting to make sense of why dance so helps calm my mind and loosen my tics that cling so tightly to me.

This is what I’ve come up with.

How Dancing Improves My Tourette

If you’re not familiar with Tourette, having it makes you feel like you’ve got a million little bursts of energy all over your body. These bursts of energy make you feel like you need to constantly move, your tics (involuntary vocal sounds or physical movements), itching to escape. Suppression is possible, briefly, but what you’re left with is a body with a ton of energy that has nowhere else to go.

Unless you dance.

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Unveiling Tourette Syndrome and revealing its artistic intelligence

As part of Philly Fringe, Band of Artists will present “Tourettes: A Dancing Disorder” at 8 p.m. Friday and Saturday, September 7 and 8, and the Painted Bride Art Center at 230 Vine Street in Philadelphia. It also will appear at 8 p.m. Friday and Saturday, September 14 and 15 at the Main Stage Theatre of the Spruance FineArts Center at Arcadia University, located at 450 South Easton Road in Glenside, Pennsylvania.

Band of Artists, a unique multidisciplinary group of forward-thinking performers and presenters, unveils the artistic intelligence of Tourette Syndrome in modern dance, music, interactive lecture and Q&A.

Group founder Sutie Madison, who has had Tourette since age 8, explores the fluid boundaries between creative expression and health-event by choreographing out of the tics, twitches and vocalizations of the condition. In the safe space of performance, audiences are invited to gaze without awkwardness, learn about Tourette and question definitions of art and disability.

The Philadelphia Live Arts Festival and Philly Fringe were originally founded in 1997 as the Philadelphia Fringe Festival. Today, the Live Arts Festival serves as a series of selected cutting-edge, boundary-breaking performing arts events, created by some of the most renowned contemporary artists from our region and around the world. The Fringe serves as a collective home for artists bringing their work to audiences in every conceivable form — in traditional and untraditional venues, using new artistic forms and established ones, breaking rules or refining them.

Band of Artists: Exploring Tourette through performance

Hi everyone, my name is Sutie, and I run a company called Band of Artists — an innovative performance troupe that explores Tourette Syndrome through artistic performance and scientific research.

I have Tourette and use my tics as a foundation for modern choreography. The performance is intended to expand the vocabulary of dance as well as challenge people’s perceptions of what it means to have a disability.

Band of Artists embraces diversity and spreads a message of tolerance as well as appreciation and even admiration for those who are different. I think this is a great outlet for teens with TS and invite you to check out one of my several videos on YouTube. If you like that one, there check out the rest of them, too!