In honor of Tourette Syndrome awareness month, May 15 - June 15, I wanted to write about my personal experiences living with the condition in order to bring attention to the stereotypes and misrepresentations associated with it. For those of you who don’t know what Tourette Syndrome, it is defined by the National Institute of Neurological Disorders and Stroke as "a neurological disorder characterized by repetitive, stereotyped, involuntary movements and vocalizations called tics."
However, I recently found out about a documentary that has inspired me, and would like to use this platform to tell you about that instead. It is an extraordinary story that, in my opinion, is a wonderful documentation of courage, determination, patience and most importantly never ending love and support.
Filmmaker Aaron Lewis started the project Very Messy and Very Beautiful three years ago when he became acquainted with Zach Lamb, a fourteen year old boy with one of the most severe cases of Tourette Syndrome in America. Aaron has been closely connected with Zach and his family throughout the last three years. Aaron was also present during the dangerous experimental brain surgery in which surgeons placed a rod into Zack’s brain in an effort to lessen his tics. After the procedure Zach’s tics almost disappeared. I do not know what it was like for Zach, but I can imagine a great sense of relief and overwhelming happiness.
I often wonder what my life would be like without Tourette Syndrome, and whenever I think about it I realize that my TS is what makes me who I am. Every case is much different, and though mine is not nearly as severe as Zach's pre-surgery, I completely understand his desire to go through with the operation. I have had many thoughts about the what-ifs of me not having this condition and, idealistically, it sounds great. This would mean no more gawking and snickering from strangers, no more feelings of worthlessness that come from subway goers changing seats due to my noises and movements. There would be no more terrible feelings at plays while I try and enjoy the show knowing that everyone around me is annoyed that they can't enjoy it in complete silence. I would no longer get filled with anxiety at the thought of having to stay silent for a long period of time. But then, all of these situations have opened my mind to so much and forced me to see things from the side of someone who has literally no control over their own body. I can not control my tics, but I can manage them for short amounts of time. Zach cannot. I am positive that because of my condition I have a more open mind, am more empathetic, and always think twice when I have an opinion about a stranger because I don’t know their situation.
I am lucky enough to have an amazing fiancée who was motivated by my experience enough to write an article explaining TS after seeing the effects that living in NYC have had on me. Please take the time to read it here.
In conclusion, I hope that, when you are in a situation with someone who is confusing or strange to you, you are able to take a moment to evaluate before judging them - you never know what they are going through. And if you have questions then ask! Personally, I love it when people ask me about my Tourette’s because it gives me the chance to spread the word and share a piece of my experience in hopes to spread empathy.
You can learn more about Tourette Syndrome here, and learn about Aaron Lewis’ documentary Very Messy and Very Beautiful by visiting their Kickstarter Campaign here. Please consider making a donation to their cause.
Co-Producing Artistic Director