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 18 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
Where is the breaking point? How far do I have to go to educate people before the ignorance stops? Yes, ignorance. This week I have come face to face with the ugly monster of ignorance. I’m really just shocked by peoples’ mentality. As I have discussed before, for the most part, I take a cab home at night because of the crowdedness of the subway during the pm rush hour traffic. The pm hours are difficult because of the endless day of suppressing my tics.
If I was to take a subway home that would mean one more hour of trying to suppress and, truthfully, I just can’t do it. I work down town four days a week and I get out of work around 7 pm. I might go have a drink with a co-worker, otherwise I get in a cab and head home. It’s about a twenty minute cab ride home, and there is a little comfortability to release some of my tics. I don’t fully let go, but release some.
Thursday night I did go and get a drink with a co-worker, and got in my cab home. I might have had a little buzz, but was pretty level-headed. It was a normal entry into the cab and we started on the way home. Within about two minutes, I noticed him staring at me through his rear view mirror. I politely asked him, “What’s wrong?”
I was doing my normal neck and arm tics to a point, but was not even at an extreme yet, so with the strange look I was receiving I was confused. He shook his head no, as if the was nothing wrong. We continued driving and I dealt with some emails on my phone. A few minutes later the driver asked me, “Is everything alright with you?”
It was at this point I knew he was talking about my tics, and I said, “Yes, just to let you know, I have Tourette Syndrome, just ignore my tics.” I smiled and went back to my phone. Even with the smile I felt outted. I like to think I have my special ways of hiding but releasing my tics. I was just shocked to have it actually brought to my attention. If you notice it, do you really think I don’t? I called my husband to tell him I was on my way home and what just happened. I was somewhat devastated so had to just get it off my chest, he told me to relax, and he’d see me soon.
Within minutes, along the FDR highway, we were being pulled over. Let me tell you New Yorkers a little secret: Taxi’s have an emergency S.O.S. light that they turn on that signals the police that they are in trouble or danger. The officers approached my door and asked me to step out and to the back of the car. While one is asking for my ID, the other is talking to the driver.
Besides showing my ID, I also showed my TS medical card and explained that I think that’s why this incident has occurred. (Really? How is my head shaking a danger to you?) The police officers were quite shocked and supportive. After trying to explain to the driver what the situation was and telling him he had to continue to take me home, the driver argued explaining that he didn’t feel comfortable and didn’t know what drugs I was on.
I also explained, that I was not comfortable continuing the ride with him. Long story short, I ended up being taken home by the kind police officers. I’m 38 years old and this was my first time in the back of a cop car, but not for a bad reason.
OK, so enough of that, the more I talk about it, the angrier I get and my anxiety builds. Yep the anxiety builds, three Klonopin a day and there is not much relaxation. I have come to the conclusion that I am going to lower my dosage back to the one at night. My thoughts are that if I’m taking three pills a day, I should feel some difference, but I haven’t.
I gave it a month, and a half and still feel that the anxiety is at the same level it was always at. Another one of my issues with taking so much is that I know that after a while you can build up a tolerance to Klonopin. Frankly, I don’t feel like I want a future of taking 40 pills a day, just to feel the same. What’s the purpose? I take my pill at night and one in an emergency, when I feel the anxiety at a peak level, like Thursday during the cab incident. I did take one in the middle of that to try to calm myself down and perhaps calm my tics a bit until I got home.
Some other interesting things happened this week regarding vocal tics. So for some reason I started a “Hey” tic. It’s not too often, but actually somewhat easy to hide. People think I’m just saying, “Hey” to them. I also started another vocal tic this week. I was out with my best friend trying to find a restaurant to go to. She recommended a restaurant I took her to about a year ago. I told her that the place had closed about six months ago.
All of a sudden, I went into an Echolalia outburst for the next 10 minutes. Just repeating the word “Closed” over and over again. Finally, after about 10 minutes, it stopped, but it was very weird. I’ve never really experienced anything like this before. I do have a bit of Echolalia when it comes to commercials. I could be sitting in another room and a commercial comes on, I don’t even realize the commercial is on but as soon as the jingle starts, I’m singing along with it. Half the time I don’t even really notice.
I guess it just goes to show you, living with TS is always an interesting journey. It’s always changing, waxing and waning, and you never know what to expect next. I really have to live my life day to day and never know what the day will be like.
Until next week, “I’ll tic to you later.”