I have Tourette’s Syndrome. Two years ago I couldn’t get myself to say those words out loud. Even now, when I do, my heart beat accelerates. I’m not even really sure why its so hard for me to acknowledge my Tourette's. I never gave it much thought. Maybe its the fact that to most people Tourette's is a mysterious disease. Maybe I am afraid that people will write me off, that no matter how "normal" I look and act, they will fall victim to stereotypes. It's kind of like a single women with children... people are just hesitant to get involved. Whether or not that's the reason I've always known that I didn’t want anyone to know that I had Tourette’s Syndrome. And nobody meant nobody. For years when people asked about my verbal ticks, even my best friends, I would tell them that I was humming. My physical ticks? I had a bad back that needed stretching. When I couldn’t hang out because of doctor’s appointments I would tell my friends that I had to go shopping with my mom... I wonder if they ever wondered why, if I was always shopping, I had the same amount of clothes as they did. When I would take my tests in other rooms at school for the quiet and the extended time I would make up elaborate stories about where I was… “I had another test so I had to start my test early but there was a lecture in our room before class so the teacher said I could take it in the library.” I was embarrassed too. I didn't want people to think that I was cheating the system, that I was being given an advantage. (When I take tests my mind forces me to spend a good fifteen minutes at the start of the test going over elaborate number and word patterns. Once I've done it correctly I can begin... everything in life is like that).
A few years ago I started becoming more comfortable with my disability. I remember walking in a nearby park, alone, late at night, and in the face of great internal resistance I got myself to whisper the words, “I have Tourette’s Syndrome” to myself. Since then I have slowly become more comfortable. I have confided in more and more people but not in nearly as many as I should have. Often I have wanted to tell a close friend but have been unable to summon the courage.
In the last two weeks I have been thrown into the ring. In 2 weeks I have made more progress with regard to accepting my disability and with regard to feeling comfortable about it than I have in my entire life. On my first day in D.C. I met a guy at registration and we became friends. Over the next week I kept telling him that I was interning “with a program.” I refused to tell him which program however. My crash course in acceptance however wouldn’t let that fly. One evening we went out to dinner and I told him everything. I’d known him for about a week and I opened up…
I am not 100% yet. I am still struggling to be open with people as well as with myself. I am however making tremendous progress. I am learning to identify openly as a person with a disability. And so I want to say that I am proud to represent the AAPD and to have the AAPD represent me.
By: Andrew Lustig