EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 10 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
I have Tourette syndrome. Have I mentioned this before? Well of course I have, maybe too much. That thought has been going through my head all week. Do I talk about my TS too much? Does the constant conversation feed my disorder? I mean it’s not as if I’m walking around and telling strangers, “Hey, I have TS”, but I continually bring up the conversation in certain social settings. I guess what I’m saying is, is it too much? Is my activism annoying people? Well if it is, guess what? I don’t care!!
Like I said before, I’m a super hero armed with a mouth, and the first step to education is opening that mouth. I HAVE TOURETTE SYNDROME. This is why I do what I do, if you want to ask me about it, I would love to tell you whatever you want to know.
I actually had a pleasant conversation this week with someone about TS. I had to get a heart sonogram because I’m on Adderall and because my mother passed away at a young age from a heart attack (love you, miss you mom). The technician performing the procedure had me in a position that I was afraid I was going to hit her with my elbow when I ticced.
She let me position myself to where I was comfortable. Not knowing much about TS, she openly asked me question after question, and I openly answered all of her questions. It was a great feeling to be approached on the situation as she did, and to then educate her. Yes, educate someone in the medical field.
I wish it was this easy in all situations, but it’s not. I had a friend ask me, “If someone was to approach me about my TS, how would I like them to do that?” That’s an easy answer for me, just ask me, but that’s just me. There are many people out there who are not as comfortable as I am. It can be a very delicate situation, but I guess to answer the question, you really have to feel out the situation.
If you notice someone ticcing and you feel the need to approach the situation, start off discreetly and with compassion. The person is more likely aware of what they are doing, but more importantly probably very self-conscious of their TS. I am very open about my TS, but that doesn’t mean I’m not self-conscious myself.
I have much anxiety when in social situations due to my tics. I am relentlessly thinking, “Am I suppressing them enough, can people see them, are they judging me?”, but if someone was to approach me and ask me I would openly start my education process.
My best friend’s birthday was this week, and she had a party at her house. Yet another event that I spent all week stressing out about, but I knew I had to go. This is the same friend that had the movie screening back in January that I failed to make it to, so I knew I had to make her birthday.
I’m also trying to fight my agoraphobia. I’d be perfectly happy if I never had to leave my house, but I’m trying to not let the agoraphobia win. I went, and creatively came up with quite a few reasons as not to shake anyone’s hand until the last introduction I just said, “Sorry I’m OCD”.
My friend is quite aware of my situation and is very supportive of me. I spent the entire evening suppressing my tics, and pretty much keeping to myself. It’s somewhat sad, but I was very antisocial and only really interacted with my husband and my friend. Social anxiety disorder is a bitch, once I start talking to someone I start to get more comfortable, but I was just unable to do this.
I was focusing too hard on suppressing my tic to even get the nerve to converse with anyone else. There were a few times my friend accompanied me to the kitchen so I could let loose and release my tics. One of the times a girl came in while I was ticcing and jokingly apologized, “I’m sorry, is this a private party? I just came in for a drink.”
We chatted for a second and she grabbed a drink, made her way out of the kitchen, and said, “Continue on with your dance party.” I chuckled a little and turned to my friend and said, “She saw me ticcing and thought I was dancing.” All together, it was not a bad evening and I was there for my friend and she was there for me, I just regret not being more social.
As we said our goodbyes and left I got to thinking, I like to sneak out without saying good-bye. I always have, but never really thought about it. Even when I was younger and out at social events, I would just leave without saying good-bye to anyone. I have some weird timer in my head and when I’m out it goes off, it’s time to go. I still do this.
I guess it’s some type of subconscious thing, my body saying “OK, I’m tired and I can’t suppress much longer, let’s go!”, and that’s exactly what I do. I leave right then and there. There’s no time to say good-bye to anyone, just get me home to my safe zone.
Sometimes I wish I was normal, but what is normal? Is there really anyone out there completely issue free, I don’t think so? I think in all actuality, if I were normal, I would probably be boring.
I believe everything happens for a reason, so there has to be some reason I was blessed with TS. I have a tattoo on my wrist of a song lyric that guides me through my life, “I am only this way because of what you have made me and I’m not going to break”. I live by this lyric. I spent so much time hiding from my TS and myself, I guess it’s time to play catch up. The clock is still ticking and so am I.
Until next week, “I’ll tic to you later.”