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 33 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
Well, my two-month stay on the vineyard is coming to an end, and I’m not sure whether to be excited or sad. I came out to Martha’s Vineyard to work, write and learn a bit more about my TS. I have indeed learned more about my TS, but have also come to the conclusion that with TS it is always a learning experience.
For me, it is always changing, waxing and waning. I have my usual tics, but one day I might start a new one. The new ones always bring on fear, because I never know if this new tic is one that’s going to stick around for a while, or will it be gone in the morning? They say that the body changes every seven years, but I feel as if mine is changing every seven days? I never know what to expect next.
The same applies to my OCD’s. I never know what new OCD I’m going to come up with. A few weeks ago, I spoke of one of my new OCD’s dealing with change (pennies, nickels, dimes, etc) on the floor. I’m not sure where this one comes from. At first, it started with the old wives tale, “find a penny, pick it up. All the day you’ll have good luck”, but only if its heads up. If it’s not heads up it could be bad luck. Could this be the cause of this new OCD, or is it the fact that we’re are talking about change on the ground, the same dirty ground that holds so many germs?
I was really hoping that this last week on the Vineyard would be relaxing, but it was far from that. I can put on a great, relaxed façade, but the anxiety is always there. After spending two months on the Vineyard, all I could think about is packing, and making sure we didn’t forget anything. I had the majority of our things packed a week before hand, but still could not stop checking every room to make sure I wasn’t going to leave anything behind.
I also found it very frustrating that my husband didn’t care about the packing situation. He is one of those people that just waits until the last minute to pack, but my mind won’t let me do that, so I was left to pack myself. I guess I don’t really mind packing myself, because in my mind, he won’t do it right. No one can pack the way I want it done.
Earlier this week, one of my housemates had her parents in town. They were all sitting on the deck when I got back from the beach with a friend. The housemate’s family was very nice, and we all got to talking. She mentioned I was writing a book. Here we go again, I just got back from the beach and was somewhat relaxed. I wasn’t really in the mood to discuss my TS, and was trying to suppress my tics.
Her father inquired about the book and my writing. I told him that I just finished writing a biography of seventeen people with Tourette syndrome. He was intrigued and asked what my interest in TS was and I explained to him that I had it. We chatted a little more about it, and then they went off to dinner.
Later on that night when my housemate returned home from dinner, she told me that her father was asking about my TS and me. She said that he said, “So he has Tourette syndrome, why doesn’t he have any tics?” I laughed when she told me the story and thought to myself, “Sure, I can look normal on the outside, but my body is in a constant mental battle on the inside.”
This week was somewhat family week on the Vineyard, and the cape. My in-laws came to the vineyard for a day and we walked around town for the day. While walking around, I overheard my sister in-law say to my nephew, “Don’t touch anything, it all has poop on it.” I laughed, for two reasons — one being this is how I feel every day, about everything. The second reason, which I pointed out to her, is a conversation we had a few months back. I don’t remember how the original conversation started, but I was complaining about parents in the city letting their children crawl around on the city streets and how disgusting I thought it was.
I would never let my child do that, she responded by saying, “Kids need to be introduced to germs to build up their immune system.” I guess I can understand this, but I jokingly reminded her about her original statement and she said, “He’s almost 6, he has enough germs now.”
When it comes to my in-laws, it’s a weird situation. I’ve been with my husband for 13 years and married for 10, and I love my in-laws. We get along great, and I love them, but I still feel I have to suppress my tics while in their company. I’m not sure why I feel this way, they know I have TS, and have been supportive with everything I do in the TS community. I think it just comes down to impressing them.
TS or not, we all try hard to impress our in-laws, and they are the last people that I would want to feel the judging stare from. I don’t think that I would ever get that stare from them, but it’s another thing that I obsess about.
Well the week has come to an end, and so has my time off. I’m going back to the grit and grim of the city, the riding of the sardine can of germs, but also back to the comfort of my own home. I’m still heading back to dealing with a houseguest for the next three weeks, but I think it will be much more calming on my OCD and anxiety. I’m excited to get back to my ritualistic schedule.
Until next week, “I’ll tic to you later.”