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 any of the first 30 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
I can’t believe it … my time on the vineyard is halfway done. I’m enjoying the semi-relaxing time I’m having here, but at the same time ready to be home. I am going back to New York for a few days this week, which will be nice, but I know going back home will bring on increased anxiety.
Living in the house on the vineyard is somewhat straining. Everyone here is well aware of my condition, and I don’t think anyone is too bothered by it. It can be annoying going out to dinner with someone who is flinging his head around and making noises, but everyone has seemed to be cool. I think the biggest thing that might be a nuisance to them is all of my OCD’s. I am always cleaning but with the amount of people here, there is no way I can get everything as clean as I want. It’s exhausting but I have had to just let go, which is hard.
Living with so many people is hard, it’s difficult to find any time for yourself. With the anxiety, and OCD, I have enough constant company, and sometime I just need some time to myself. This week I took a little adventure into town by myself. It was nice, I walked around, did some shopping, and did a little restaurant hopping and had some appetizers.
An excursion like this is usually out of the question with my social anxiety disorder, but it wasn’t that horrible. I was ticcing as usual and I tried to suppress most of them, but I did let some out. I was somewhat in the state of, “I don’t care.” I just wanted to be out and enjoy the company of myself.
After my date night with myself, I took a cab home, and ended up having to share it with two women. At first, I was a little judgmental of them, they seemed like snobby tourists. They started talking about a tourist T-shirt that they kept seeing at all of the tourist stores. They didn’t understand the meaning behind the shirt and I explained it to them.
We got to talking a bit, and they asked me if I lived on the island or if I was just visiting. I explained that I was here for the summer, writing a book. Anytime I tell anyone that I’m writing a book, the first question is, “OH, about what?” I told them it was about Tourette syndrome.
The one woman said that her nephew has TS. We continued chatting until we got to my destination. It’s moments like this, which goes to show you, there are a lot of us ticcers out there. It really does seem like most of the people I talk to, knows or knew someone with TS at one point in their life. These are usually the people that you don’t have to explain yourself to. I did have to explain myself to the two women.
When I told them I was writing a book on TS, they asked what my interest was with TS, and I told them that I had TS. They were a little surprised, and said they didn’t realize, but I was trying my hardest to suppress my tics at this point. This type of incident makes me wonder, do I really have to spend so much time and strength suppressing my tics? It exhausting trying to suppress them all the time, why don’t I just try to be myself more? If I stop hiding from myself, I will have more opportunities to educate someone.
The next night, my husband and I were invited to dinner at a couple of my husband’s old students’, and parents’ house who were on the island for the weekend. I had been having anxiety over this, because of the ticcing and social anxiety disorder. I thought, this might be a good time to start being myself a little more. I still suppressed my tics a little bit, but did let many of them out.
There were about 15 people there, all not aware of my condition. I sat there, ate, and ticced away. No one said anything. This just made me more anxious, I just thought to myself “They are all just sitting here staring at me and judging me.” This just led to the roller-coaster of feelings.
My OCD took over and just kept thinking about them judging me. I then tried suppressing my tics, but it was too late, the anxiety was out of control. I ended up going outside and having a tic attack. As soon as I started screaming out “f—er”, I knew it was time to tell my husband we had to leave. We did make it all the way through dinner, so I didn’t really feel bad about leaving early. I just knew it was time to go before anyone saw or heard me.
It’s hard to explain how sometimes I can have the strength to educate, and other times I just panic. I think it all depends on the day, and who’s running my brain on that day. Is today anxiety’s day to run my brain, or OCD’s day? Maybe they are both off, and its tic’s day to run the brain. I never know, but I really wish they would give me a schedule.
I have talked before about not driving because of tics. Here on the vineyard, I feel a little more comfortable driving, it’s not the crazy traffic of NYC. One day I drove my husband to work so I could have the car for the day. It was fine, I was still ticcing but not as stressed out as I would be in the city, but I did realize two things.
When I’m in the car, driving or as a passenger, I have to hold on to my sunglasses while I tic otherwise they are going to fly out the window. I also realized that I cannot drive at night! When I had to pick up my husband that night, it was so scary. I’m not sure if it’s part of my TS, but my eyes are sensitive to light. Every time a car passed me, I felt like they had their brights on, and it was so hard to drive. This was yet another moment that lead me to thinking, I just need to leave the driving to my husband, it’s just safer for everyone.
Until next week, “I’ll tic to you later.”