It was a Wednesday, Febuary 23rd, 2011 to be exact and I was sitting in the office of the head of a prominent university's movement disorders clinic with my parents on either side of me waiting for the neurologist to tell me what I already knew and what I knew my parents dreaded. I shook slightly from nerves and tried to explain clearly through my dry mouth, my obsessions, compulsions, and tics. I even demonstrated, per request, one of my vocal tics that sounded just slightly off from a hiccup or a squeak. Thoughts ran rapidly through my mind as the doctor tested my reflexes, asked me to follow his finger from left to right, and had me walk toe-to-toe in a straight line, a task I could hardly complete without tripping thanks to my nervous shaking which elicited the all too familiar “boy you are nervous” comment. I had received this comment more times than I could ever begin to count along with the all to familiar "are you okay?" comment. I thought about how my parents would react after hearing it from the neurologist. Would they get angry? Cry even? I thought of my mother’s words from two months before the appointment, when I first told her that my nervous habits were called “tics” and that my psychologist who I was seeing for my OCD thought it was Tourette’s syndrome. These words are still with me today and remind me how far my parents and the people around me have come in terms of acceptance and understanding: “Having Tourette’s is like being in a wheel chair, Ruthie. Those people bark, shout, and swear. You don’t have that, it must be something else”. Near the end of the appointment when the neurologist confirmed my parents’ fears and told us that the kinds of things I was explaining, my history of tics, obsessions, and compulsions did indeed indicate Tourette’s syndrome, I found that my idea of my parents’ reactions was not too far-fetched. My parents now knew that you didn’t have to bark, swear, or shout to have Tourette’s, and that in fact most people with Tourette’s only had the kinds of tics that I have, things like eye movements, air swallowing, arm and hand jerking movements, sniffling, squeaking sounds, and muscle tightening. However even though they knew these things, they still reacted with fear and the need for absolute silence about my diagnosis.
Per my parents’ requests, no one could know that the neurologist had diagnosed me with Tourette’s syndrome, a neurological disorder characterized by multiple motor tics (involuntary movements) and at least one vocal tic (involuntary sounds), at least not until we really thought about the effects that telling others would have on my future. In the doctor’s office my father had told me that if people knew that I have Tourette’s, doors would close for me, people would discriminate against me, and worst of all even my closest friends and family would no longer accept me as a regular teenager. In my father’s mind, telling others about my condition would be the end of my chance for normal relationships, a normal career, and a normal life. Although hearing this from my father, what I interpreted as his equivalent of saying that I would never be accepted for who I truly am and would have to hide forever behind the fear that my diagnosis held for both my mother and him, I refused to believe that his perception was the truth. I refused to settle for fear, denial, and self-rejection.
I knew it was my responsibility to show my parents they were wrong, because I knew deep down that they were. It was my responsibility to prove that people would not discriminate against me and refuse to accept me. I would not hide behind this diagnosis my whole life in fear that someone might find out, I would not let it have this much control over me and my life. My parents agreed that telling my friends and classmates that I had tics without mentioning the diagnosis Tourette's Syndrome was necessarily if I was going to come out of high school with any kind of mental sanity. I was so fed up with other people's comments. "Are you okay?" "Why are you doing that?" "What was that?" and even the occasional "Do you have Tourette's or something?". My friends were starting to wonder more than anyone else and I felt so bad lying to them and brushing off their comments. My friends seemed to be okay with my tic explanation when I explained. It was better than saying nothing at all I guess. But I was still hiding from the diagnosis; I was still prisoner.
More of the story is coming! That's not the end! The rest will come soon, I promise.