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 23 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
I’m tired. I think that can explain my week right there. This has been an extremely busy, anxiety, and tic-filled week. I went out of town for a few days for work, which wasn’t too bad. The trip actually started off somewhat cool. I was on the plane with Michael J. Fox, and I did actually approach him.
We ended up having a short discussion comparing Tourette Syndrome and Parkinson’s Disease. I do have to say, I was excited to talk to him. He has done so much awareness for Parkinson, as I am trying to do for TS. Even though I knew I’d never hear from him, I did invite him and his family out for dinner. (I didn’t hear from him). Either way, it was an interesting experience.
I was only out of town for three days, it was quick in and out work, not too stressful. The flight back was not as exciting, just me and my Sky Mall. Don’t judge me, we all know we do it, look through the Sky Mall shopping for things that we don’t need. However, have you ever really looked through it, I mean really looked through it!? I think the magazine might be created by a germaphobe.
There are so many different kinds of antibacterial things in there. There are lights you can shine on your hands to kill the germs, lights you can shine on your bed to kill bugs. They even have different types of travel ones. By the time the plane landed, I wanted to purchase half the magazine.
It seems like my TS loves to try new things, it’s like a kid in a candy store. I have all my normal everyday tics, but every now and then, a new one will pop up. It might last for a day or two, or stick around for a while. This week I’ve had some interesting echolalia tics. Echolalia is the repeating of words that either you have said or something someone else has said. I know I have had a touch of this anyway, but it usually only happens with commercial jingles. I constantly sing along with commercials.
My husband tells me I watch too much TV, but the truth is, half the time I don’t ever remember seeing the commercial. This week, I guess you could say I had a strange Echolalia tic attack. On the way home from work I just started repeating a phrase over and over. I kept saying it in threes until it felt right to stop, but it never felt right, and I couldn’t stop until I got out of the cab. Once out of the cab, my mind went blank, and I had no idea what I was just repeating.
When I got home I told my husband about this, and I was somewhat shaken up by the situation. I’ve never done anything like this before, it was a very weird feeling. It almost felt like it did when I first started experiencing tics when I was younger. It was hard to explain to my husband, because I couldn’t even remember what I was repeating.
A couple nights later, it happened again, but this time I was in the cab with my husband. This time he was able to witness it. As soon as it started, I also pulled out my phone and text messaged myself the phrase I was saying. Once again, repeating a phrase three times until it felt right to stop, “Is that what I did? Is that what I did? Is that what I did?” and once again it did not stop until I got out of the cab.
This got me thinking about all my tics, and what triggers them. Some are triggered by sounds, some by smell, some are just there. Could this new tic be triggered by cabs? I did have that incident in a cab a few weeks ago. I really hope that’s not the case, we already know how I can’t deal with being on the subway. I think my TS is slowly forming issues with all forms of public transportation. If it keeps on going this way, my dream might come true and I will become agoraphobic. Either that or bubble boy really is going to have to come alive.
I did a little experiment this week. There are so many brave kids and adults out there that do informative YouTube videos about their TS. I give these people props, especially the kids who do this. I try to do what I can to bring awareness to the TS community, but I don’t feel I could ever put myself on display like that for the whole world to see. I don’t know what I look like ticcing, but I feel like I do, or at least I thought I did.
One day this week while I was writing, I set up my video recorder on my phone to tape myself. I taped myself for about ten minutes. Now seeing that I was in the comfort of my own home, there was not a need to suppress any of my tics. After the ten minutes, I watched myself. I had two thoughts about what I saw. One; if anybody likes there martini shaken and not stirred, just tape the mixer to my head, and Two; how the hell have I never given myself whiplash? It hurt me to look at it, I must have a neck made of steel.
I guess once we have the strength to speak out, then we come up with our own ways to bring awareness. Some of us do informative videos, some of us might even do some form of public speaking. I try to bring awareness through my keyboard, and my writing. I suppose it doesn’t matter how we do this, as long as we do. If whatever we do reaches one person and educates them just a little more, we have done our job. I know I have reached people with my writing, and I hope it has educated them in the truths of what a person goes through living with TS.
Until next week, “I’ll tic to you later.”