52 Weeks of TS: Week 22

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 21 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

Pinch pinch rub, Pinch pinch rub

Every once in a while I might do a tug

All day to the night, Until it feels right

Over and over, that’s the way that it goes,

That’s the way that it goes, with the tic of my nose

The loud clap of your hands, Brings the twitch of my neck

And the honking of horns, Brings the jerk in my back

I think there’s a new tic starting off,

Besides my hum, I now have a cough

I never reveal the real me,

I hide and I hide, suppressions my key

Behind closed doors, I jerk and I twitch.

This life with TS is really a bitch

But I write down my story and help people out,

There’s something to say, what our life is about.

My TS is no BS, my doctor gave me a dx

So stop staring and mocking, and pointing at me

Come ask me some info, education is the key.

Hello hello hello everyone. So I thought I’d start this week off a little different, with my little attempt at poetry. Whether its good or bad, it’s all about expression. We have to open our mouths and express ourselves. I’m always trying to educate someone about TS, but I’m also constantly learning more and more about my TS and myself.

The definition for syndrome is; a group of symptoms that consistently occur together or a condition characterized by a set of associated symptoms. We all know that there are underlying symptoms of TS, but what are they? The list could be a mile long, and you’re not always diagnosed for every single one. OCD, Anxiety disorder, ADHD, ADD, Oppositional defiant disorder, anger disorder, and the list goes on.

Without understanding that this syndrome has all these underlying symptoms can make you crazy. Really, I spent half of my life thinking I was crazy, not understanding my TS and myself. I thought, “Great I have this TS thing, I’m OCD and I have anxiety disorder. What the hell!” However, after educating myself, I realized I wasn’t crazy, I just have TS. Everything else comes along with it. It’s a package deal.

If I look back on my life, I can see many of these disorders in my past. I know I’ve always been anxious, and always had some OCD tendencies, but learning about other possible disorders is interesting. As a kid, I always considered myself very independent, I did not like authority, or being told what to do, hello Oppositional defiant disorder. And Anger disorder, don’t even get me started.

My whole life I can remember being fine one minute, but able to flip out over nothing the next. The drop of a penny, I’m flipping out, and then a few minutes later I’m fine. Even a few minutes later I kind of laugh at myself and think, did I really just do that, where the hell did that come from? It’s the package deal I was given at birth, but if we know and understand this syndrome, we can understand ourselves more.

Another underlying disorder linked with TS is Sensory sensitivity disorder. I learned about this one not too long ago, and I have been really trying to pay attention to this in my life. If you have Sensory sensitivity disorder, different things could affect you. You could have issues with taste, touch, sound, smells, or visual sensitivities.

After learning about this I realized there are certain things that set me off, make me tic. I remember, as a kid the sound of a clay pot rubbing up against the clay saucer would make me cringe. Was this cringe a tic? I don’t know, but I still can’t deal with that, I can’t even feel a clay pot without freaking out. To me, it’s like nails on a chalkboard. Also, the sound of someone filing their nails…

Ohhh, I remember my stepmother always filing her nails and just wanting to jump out the window. Now, we lived in a house, so jumping out the window really wouldn’t have done that much, as long as I opened it first. My point is I just needed to get out.

With Sensory sensitivity disorder, I think about how it affects my life today. I hate the smell of bleach. The smell just puts me in a tic attack. Also loud noises; motorcycles passing by, cheering and clapping, honking horns, it all makes my tics crazy. Bright lights are not the best either. The sun and bright florescent lights can be a trigger too.

With a few of these that I listed, I understand why when I’m on the subway I always wear my earphones and sunglasses. I block the sound and light. I always wear my sunglasses, to the point that my husband bitches at times. If we’re in a bright store I usually have my glasses on, and he is always saying, “We’re inside, take your glasses off.”

Overall, this week was one of those good ones. I talked before about being a big believer in everything happens for a reason. I have TS for a reason, who knows what that reason is, but maybe it is to educate. I was at a bar this week for a drink with a friend and two girls came in and sat next to us.

After a while, one of the girls engaged me in conversation. Just going from basic small talk, we realized we were all hairstylists. Having that common thread kept the conversation moving. I told them I was also a writer, and they asked what I was working on. I told them I was writing a book about Tourette syndrome, and explained that I had it.

One of the girl’s mouths dropped. She told me she had a 12-year-old son with TS. How and why do things happen like this? These two girls could have gone to any bar, and they chose the one I was at. They could of sat anywhere at the bar and chose the seats next to me. The right place the right time. I spent the next hour talking to them about my life, and my workings with the TSA. She was not well connected in the TS world, but now she has more tools to work with.

Ask yourself, “Why are you here?” There’s a reason. Open that mouth of yours and speak up. If you educate one person, that person will have the tools to educate someone else.

Until next week, “I’ll tic to you later.”

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