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 three weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
Week 4 — wow, yet another year quickly flying by. I think when we get old the time just goes by faster. I think of my grandmother, who is 94 years old, she must blink and a year goes by. I’m not sure I want to make it to that age, especially with my TS. I spend a lot of time worrying about my elder years and the state of my body.
We are not given a death penalty with Tourette Syndrome, but what is it doing to our bodies? We hear all sorts of stories about kids, and young adults, with their tics, but what about older people living with TS? With the rate and aggressiveness of my neck tic, I worry about arthritis, and the thought of arthritis in my neck does not seem so pleasant. In addition to the neck tic, I worry about the shoulder and arm tics. Most of the time when I do my shoulder tic I feel cracking in my back, as if I was cracking my knuckles, and my arm tic causes fatigue in my arm.
We suppress our feelings and we suppress our memories. We do this so we don’t feel, and so we can try to forget. This is also true for a person with TS, but unlike a feeling or memory, we can only suppress our tics for so long until they come out. You can suppress a feeling or memory for years or even decades until some therapist pulls it out of you in a therapy session.
‘I have spent most of my life trying to suppress my tics to avoid the stares and whispers. If I’m out in public, at work, or any type of social setting I am trying very hard to suppress my tics, but as soon as I get home to my safe place, I snap. Imagine that my tics are one of those little toy pull back racecars, and my suppression is pulling back on that toy car. Don’t let go quite yet, hold it there. There is a lot of build up. Once I walk in my door it is like letting go of that car, I go racing!
I have been trying to be myself and not suppressing so much in certain social setting, but unless I never leave my house, I am never myself. Actually, I was just out the other night with a small group of friends, all of whom know I have TS.
Normally, I would try to control my tics, but this time I did relax a bit and was myself. One of my friends is going to medical school to be a nutritionist. I have been hearing a lot about tics being semi-controlled by diet, so I asked her for her opinion. I was utterly shocked and repulsed by her response.
She basically told me that Tourette Syndrome was caused by emotional issues. Once again, I quickly shut down, and left. I wish I had defended myself, but sometimes I have to pick my battles and whom I feel the need to educate. By the end of this year, I am going to try to summon up the courage to be myself one day, and try to not suppress my tics for a whole day. It should make an interesting train ride to work, hell an interesting day at work.
Just like anybody else, my life is ever changing. The same goes for me with my TS. Over the years, I have seen my tics change, my anxiety change and my OCD’S change. Sometimes they get worse and sometimes better. I’m not sure if it is all that I am doing with the Tourette Syndrome Association, and for the TS community, but I do feel it has been a more difficult time.
I have found it more and more difficult to leave my apartment due to my OCD’S. There is always something that needs to be cleaned, straightened, or put away. I could probably organize my apartment for the rest of my life and never be completely satisfied. Most mornings I start in my bedroom and move to the bathroom, down the hallway to the kitchen working my way to the living room trying to satisfy my OCD’S.
I just slowly work my way to the door, and as soon as I feel everything is clean and organized enough I have to leave at that moment. If I don’t, I will continue to find things to fix and sort. This past week I have found myself getting this same way when I get home. There has been a few times this week that I have had to force myself to sit down and relax, and still I never relax.
Despite all that’s happened this week it has been a decent week. We are human and we learn to adapt. That’s what I do with my TS, adapt, and that’s what I will continue to do.
Until next week, “I’ll tic to you later.”