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52 Weeks of TS: Week 2

EDITOR’S NOTE: On Tuesday 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 last week’s debut, here it is. For more information about Troye, please click on his name or visit his website.

I’m thinking of a quote, well obsessing about a quote. ”It gets better with age.” We can connect this quote to a lot; wine, some cheeses, and our favorite pair of jeans. What about us as people? Do we get better with age? Having TS makes me wonder. Studies say that about a quarter of children with TS endure tics into adulthood, and only about 5 percent to 14 percent suffer with tics and actually encounter more and new tics in their adulthood.

Well, being nearly 40, and still living a tic-filled life, I’d like to welcome that 5 percent to percent. I actually feel that my tics have worsened over the years, more frequent, and new ones, but hey, if I wasn’t like this I probably wouldn’t be where I am.  In the past few years I have done many things for and with the TSA, and now am on the board for the New York City chapter. I use my writing as a window to the truths of TS and variation of symptoms we as sufferers go through.

My week started off sad, Sunday I had to take a friend to the emergency vet to have her cat put to sleep. My husband drove and I sat in the back seat sacrificing the front seat for my grieving friend. Torturous for me, I have major anxiety sitting in the back seat of my own car. I can sit in the back of a taxi, but panic sets in, in my own back seat. Yeah I know, strange, but it’s the world of TS.

I have been very OCD this week, organizing and cleaning. I have been trying to simplify everything this week. I cleaned my work station at work and got rid of everything I don’t use, I deleted everything on my iTunes and reloaded everything, and I went through all of my pictures and got rid of everything I didn’t want, then put all I wanted on my online storage. The bonus was that I freed up a lot of space on my computer.

I also decided I didn’t like writing in my bedroom, so I took apart my work area in there and cleaned out my dining room and erected an office in there. My husband knows if I have something in my head it’s going to happen and usually happen fast. I woke up one morning and looked in my dining room, at the huge table that in the four years we’ve lived here, we’ve used five times. (One time was to play dominoes, and one time was to build a puzzle). We never even go into the room, it is basically an unused room. Through this thought process, I look into my room and realize the same goes for my writing station in my room, so when I told my husband this it was basically a roll off the eyes and a “whatever dear.”

It’s getting cold out, still no snow but I’m reminded of how much I hate winter. Everyone on the subways are sneezing and coughing. There is just not enough antibacterial, and Lysol to calm me down. Although I am excited, I made the best purchase this week. I bought three automatic antibacterial dispensers. I put one in the kitchen, one in the bath room, and one in the cat closet next to the cat pan. It always weighed on my mind, I’m using antibacterial to kill germs, but if I’m pressing the pump to get the gel out, I’m just putting germs on the pump. So then I would have to clean the pump, but not anymore. I just put my hand under and the sensor detects my hand and provides me my germ killing serum. Why can’t we have these on the subways?

In my mind there is a simple answer to my subway issues — agoraphobia. If I just didn’t take the train I wouldn’t be so freaked out about all the people staring at me for my tics, or the stress that I go through trying to suppress my tics until I get off the train. And no germs spreading!!  Secretly I’d love to be agoraphobic, well I guess it’s not that much of a secret if I’m expressing it here. I’d like to be agoraphobic, but instead of restriction to my house, I’d be restricted to my neighborhood.  I feel safe in my neighborhood, I’m fine as long as I don’t have to deal with public transportation.  I live in a nice small neighborhood in upper Manhattan which is primarily occupied by small mom and pop stores, so I never really deal with places having big crowds. It’s a nice thought, but I have to push on.

Well, we take a deep breath, one step at a time, and one tic at a time. Until next week, “I’ll tic to you later.”

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  1. Thanks for sharing a glimpse into your life. I know little about Tourette’s so didn’t know about the five to fourteen percent figure. This makes me think about other neurodevelopmental conditions. I myself have autism and have gotten a lot worse in adulthood, but this is not common as far as I know either. It’s tough when people expect improvement with age.

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