EDITOR’S NOTE: Every Tuesday, noted Tourette Syndrome advocate Troye Evers shares his “52 Weeks of TS” blog journal with the TSParentsOnline community. With just TWO weeks remaining in this series, there’s a chance you missed one more entries from his exciting, revealing journey. You can read all of them here. For more information about Troye, please click on his name or visit his website.
I’ve been doing a lot of thinking lately, thinking about what I’m hoping to achieve through my writing. I was asked about this topic this week when I did an interview about blogging, writing and reaching out to the TS community. The interview was for the TSA newsletter, and it got me thinking: Besides a little ADHD and having a little difficulty concentrating, I don’t have that many problems writing. I can set a time line and finish the project in that time line. If I sit down in front of my computer, the words just roll onto the screen. I might not have a hard time now, and enjoy what I do, but this wasn’t always the case.
Back in school, I was always behind with my work and it was always a struggle. Being in a classroom full of students with all sorts of distractions did not make it easy. I know there are still children today who are struggling the same way, too scared and embarrassed to say anything. I wish I knew then what I know now, maybe I could have changed something in my educational process to make it easier and more enjoyable.
I have noticed recently that my tics are changing. I guess that they are always changing, but this is different. I’m not sure if they’re getting worse or if I’m just having a harder time suppressing them. I have said before how I have been getting more comfortable with my tics and not feeling the need to suppress them, but even in situations when I’m trying to suppress them I am finding it to be a struggle.
I’m starting to think it might be the Chinese herbs I’ve been taking. I have been taking them for more than six weeks now, and I don’t feel as if it’s helping at all. Now I’m just in a panicked state, wondering if I screwed up my body more with the herbs. I have made a decision to stop taking them, I have not spoke to my herbalist about this yet, but I just feel as if it’s something I need to do.
Our bodies are constantly telling us what they need. If we lack vitamin C, we crave orange juice; if we need protein, our body will let us know it needs some. This is how I’ve been feeling this week. I have been having many smaller tic attacks that I can’t control, and there is something in my body that is pointing to the Chinese herbs. So yet again, one more failed attempt to find my nonexistent path to normalcy.
One of the new tics I have noticed is a violent flipping in the middle of the night. I always thought I did not tic in my sleep. Even my husband has said that he knows when I’m asleep because I don’t tic anymore. In the past few weeks, I have noticed that In order to roll over, I tend to do this violent full body twitch to roll over. It’s so violent that I actually wake up. It wasn’t until this week that I started wondering about this new strange movement. Is it a new tic?
The other morning my husband woke up and told me I was not allowed to keep complaining about his snoring if I was going to continue this violent flipping thing I was doing. That was it, I was convinced that this was a new tic. My husband has noticed this new tic, and it is even keeping him up. Well I guess it’s even with the amount of time he keeps me up with his snoring.
I think this new tic was the last straw in my decision to stop the Chinese herbs. Is this new tic caused by the herbs or is it just more of the waxing and waning of the syndrome? It’s just gets me thinking more about what I might be doing to my body with all of these attempts to find a cure. Is there a cure? Is little old me going to be the one to find it? Is my life that bad that I need to keep attempting to do this to my body?
The truth is my life is good. I’m happy; I just do these weird movements. I’m sure I could continue educating people about the reality of TS, but how much would I really get across if I looked normal. If I twitch and tic, it will be easier to start a conversation if someone notices.
Maybe all of these attempts to find the cure, might be one more way for me to hide from whom I am, and that’s not what I want to do. Throughout this year, I have tried so hard to educate people and every time I do, I experience the greatest, warmest feeling inside. When I was hiding from who I was, all I felt was shame and loneliness. Why would I want to go back there?
I still find myself doing little things to hide from who I really am. This week I did some shopping for some winter clothes and I realized something else. I love hoods. Most of my shirts, sweatshirts, or coats have a hood. Wintertime is the best time for me to show off this love, but there is more behind this fascination. It is a way for me to hide. If I have a hood on, I feel like people can’t see my tics.
Armed with my hood, my sunglasses, and my earphones, I am hiding from the world. I think it is time to take off my armor, take off the sunglasses, take out those earphones, and pull that hood down off my head. Life is a learning experience and we spend our whole life doing this. Perhaps the whole reason I have gone on this journey was for me to learn. Let the world see me for who I am.
Until next week, “I’ll tic to you later.”