EDITOR’S NOTE: On Tuesdays over the next year, noted Tourette Syndrome advocate Troye Evers will share his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 8 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
I’ve been spending this week trying to look inside myself, trying to understand this stranger who resides inside me. After all of these years, TS is still very bizarre and foreign to me. There are so many studies that take place every day, every month, every year and it’s still foreign to many medical professionals.
One of the things with TS is that the tics wax and wane and we each experience our symptoms in our own way. I have talked about this before, but my TS has become worse in the past year or two, I guess this is the waxing and waning. I suppose this is a good thing because it gives me more material to talk about and more for me to learn from.
I think of myself as pretty ritualistic, but with TS every day is still a new adventure. Who am I going to meet today, what disgusting thing is going to happen to me, and am I going to discover a new tic, or something new to be OCD about? I guess I’m glad that my tics and OCD are as active as they are so I have something to write about and hopefully can educate people.
The past couple of weeks I have been discussing the halting of shaking people’s hands. After last week’s post, I had someone comment that I shouldn’t let my OCD get the upper hand. Was I letting my OCD get the upper hand, could I try to control it more? I don’t know, but that thought process didn’t last too long.
One stop before my stop, I was waiting at the exit. The guy next to me went to rub his nose to realize his nose was bleeding. Here we go, panic in the head of Troye. I reach in my bag, grab my travel tissue pack and hand it to him. He thanked me and took a tissue out of the pack. The sense of panic became overwhelming as I waited to get to the next stop.
As we arrived at the next stop, the guy tried to hand me the package of tissues and remaining tissues. I looked at him and said, “That’s alright, keep them.” That’s the problem, the Germaphobia is just ingrained in my head. I was not about to take the tissues back knowing he touched them. In all honesty, I don’t think I gave him the tissues to be polite, I gave them to him because I’m OCD and I didn’t want to see his bloody nose.
Living in NYC is kind of a losing battle. I have the convenience of public transportation, so I don’t have to worry about driving with my tics, but I still have to deal with the public, and their germs. My husband is a schoolteacher and has the luxury of having the summer off. He usually spends a month in Martha’s vineyard with my cousin and I visit him on weekends, but this year we have decided to spend the whole summer up there. This will give me a long, overdue break from the city, and much needed time to work on other writing projects I have.
The bonus of this out-of-town adventure is that it will give me two months out of my normal setting and give a different perspective from my week to week life.. NYC is a funny place, once you leave the city you immediately start to relax, but as soon as you’re back in the city you go in double time. You walk faster, you talk faster, it’s the curse of this fast-paced city. I’m excited to try to relax for two months.
This week I have been working on a few different projects with the NYC-TSA and it has me thinking. For the past three to four years, I have been working closely with other people with TS and I have realized that we trigger each other. I have previously stated that in the past year or two my TS has worsened and I wonder if this is due to all the things I am doing with the TS community.
Up until three to four years ago, I had never met anyone else with TS, but I’m so glad to find there are others out there like me. I have friends, a network, and a support group all rolled up into a great set of people. With my diagnosis so long ago, I was not properly educated about TS.
It’s amazing, with all of the research I am doing and the people I have met, the things I have learned about TS. I spent most of my twenties without insurance and by the time I had insurance in my thirties, I had learned to deal with my TS. I was not aware of the underlying disorders. I spent most of my time thinking I was nuts, that I had this TS thing, but I also had anxiety disorder, OCD, ADHD, and whatever else my mind told me I had that day.
It wasn’t until four years ago, when I was working on a screenplay and spent a year researching the disorder, that I realized, “I’m not crazy, I just have TS.” This was a big relief, I’m much more comfortable knowing I have one disorder and all of the other issues come along with it. It’s somewhat cool, I got the package deal.
We as humans spend our whole lives learning from each other, whether it’s a parent /child situation, a teacher/student situation, or even a person/person situation. If you don’t have TS but know someone who does, ask them to know more about what they are going through.
If you have TS, take a moment and educate someone about what you’re going through, you can also compare feelings with someone else who has TS. Trust me, I have learned a lot from other people with TS.
Until next week, “I’ll tic to you later.”