Both of my brothers have Tourette Syndrome. For some strange reason I do not, so I cannot speak from the perspective of someone who lives with the challenges of TS every day. I can only speak from the perspective of a sibling who grew up attempting to understand the ins and outs of this disorder.
Based on my experience, I consider TS to be a bit of a cocktail syndrome. In my family, you don’t have just TS. My older brother has the motor and vocal tics of TS and the accompanying frustrating emotions that follow. My younger brother has TS, but his tics come and go, and his main fight is with obsessive-compulsive disorder (OCD) and anxiety. A typical evening in our home could often be very tense. My mother and I would say that my brothers would “Tourette against” each other, sending them off into a chain reaction of frustrating emotional experiences. Although stressful, it was probably not too different from other homes with growing teenage boys, albeit perhaps a bit more colourful.
Petty arguments and broken toys aside, when I think of Tourette, I have a very positive association. I think of resilience. I think of strong individuals who—either with the support of their families or by their own sheer will—are able to push beyond the stress of limitations, and are able to blossom regardless. I think of my older brother, currently studying Conservation Biology, whose tics don’t let him skip a beat as he effortlessly identifies birds, mammals, plants and trees while going on a walk near our family home. I think of my younger brother, currently living in Japan teaching English and art, whose OCD and rituals have greatly burdened his life but have also turned him into one of the most amazing and dynamic artists I know. I have an apartment full of artwork to prove it!
TS is by no means a cake walk. It can be cruel to those who live with it and difficult for outsiders—and even siblings—to understand. The one thing I know for sure is that a diagnosis of TS is not a scary thing. My family is very fortunate that my brothers were diagnosed at young ages and able to understand that their behaviour, tics and anxieties were not their fault. The hardest thing to come to terms with is that it is no one’s fault; not the person ticcing, and not the parents. With a diagnosis, we had help and support from pediatricians; my parents had books to reference and share with me; and, with organizations like Tourette Canada, we were provided with tools to help navigate this disorder.
TS is tricky, frustrating, and demanding. But so is life. I know and have seen that my brothers will not be limited in their lives because of TS. They have both blossomed into amazing men despite it. The have demonstrated the importance of being resourceful, understanding, and patient. It is my hope that this perspective provides families and individuals living with TS a bit of hope and inspiration.
Wishing you all the best for 2018.
By Isabella Sulpizio