This is the essay I submitted to the NJ Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2016 Youth Scholarship Award contest. I hope you enjoy it!
I have had TS all my life, and it has affected me all my life, even though I may not have known what it was until more recent years. Knowing that I have Tourette Syndrome gave me a sense of identity, and a group of people to belong to. More importantly, it gave me direction and even more reason to create. I have always prided myself in being an artist, in particular a photographer. Being diagnosed with TS has given me a need to create and provide good representation for those with TS. I feel as if I need to prove to the world that I’m not some crude video on YouTube for people to laugh at, I am a remarkable human being that can create something beautiful out of anything. Having Tourette Syndrome has its good days and its bad days, and even on those bad days I can be reminded to keep on going and keep on ticking because TS makes me, me. I am the most important thing I could ever have. Tourette Syndrome showed me that while things can be uncontrollable, wild, and unpredictable, there is always a place for you to belong. TS has taught me that you have to be willing to go with the flow, and that not everything has a reason, which I believe that is one of the most valuable things you can learn going into adulthood. Accepting things as they are will always be a benefit to you, especially with something like Tourette Syndrome.
The Space Between You And Me is a powerful art installation that moves people who experience it. It’s a captivating exhibit, managing to express what it’s like to have Tourette Syndrome through footage of interviews with youth with TS and interpretive dance inspired by the disorder, all projected onto a series of transparent and semi transparent screens and mirrored in various reflective materials.
At a recent exhibition attended by hundreds of students, one teenager said that The Space Between You And Me had “changed her.” Evidence of the profound effect this project has on teenagers can be found in a blog on the official project website, where teens share their own inspired thoughts and feelings on a range of issues.
Why does The Space Between You And Me strike such a chord with teenagers? No doubt it has something to do with the installation’s theme, and the special young person who sparked its creators. From the official website:
Paige Tomashewsky, the teen who inspired the creation of the project, suggested the title for The Space Between You And Me. Paige’s TS has forced her at times to keep a space between herself and others for their protection. Students always left a space around her at assemblies and in line-ups. Although she always understood the need for this, it was still very painful.
Even given theses boundaries she has a lot of friends who know the price of being in her space but they willingly accept it. The space is the physical and emotional gap that TS creates for Paige. Sometimes it is to protect her from people’s judgments or to protect others from the dangers her tics can cause. Continue reading