52 Weeks of TS: Week 18

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 the first 17 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.

This was an intensely emotional week — a week of ups and downs. I started my week off receiving the horrible news that a close friend lost his internal battle with depression and took his life. A very happily seeming person, gone. I am finding it very difficult to write about this now without crying.

Besides spending all week very upset and dealing with the stages of death, I have also been trying to figure out if and how I was going to discuss this in the blog. I came to the conclusion that I was going to discuss it because it was a big part of my week. This situation brought on a roller-coaster of emotions, which then did trigger many of my tics. The stress was quite overwhelming and really exacerbated my neck and shoulder tics causing me pain all week.

Besides dealing with the death of a friend, I also had to do hair for a show with my husband’s school. Working on these shows also adds for a stressful week, but In addition to the mixed emotions I already had, I was quite excited for this show. It was the last show of the school year, which will free up a lot of my time now that it is over. I do five shows a year with the school, and each show is a hard experience for me.

I had an alright experience in high school, but dealt with a lot of difficulty because of my TS. There was constant teasing and mocking, which did not allow for the perfect high school experience. Every time I do one of these shows, I feel like I’m flashing back to my own high school days. I still suppress my tics from the kids, and often find myself hiding the fact that I have TS.

Children are cruel and I saw that this week. I also get self-conscious around the parents of all the kids. I still suppress my tics, and worry that the parents will see me tic. What would they think if they knew someone with TS was working with their children? Would they think that I’m sitting back stage screaming out profanities? We all know it’s true. Some might understand, but a majority would go to the media stereotype.

I’m only one person, and I can’t educate everyone, but I was able to conquer my fears and help someone out.

While working on a show I notice a child had a grunting tic. After this child had an altercation with another student, not regarding his possible TS, his mother came in to speak to my husband about the circumstance.

As the boy walked away, I asked him if he was all right? He said he was fine, he just needed to take his medicine. I replied, “Medicine for what?” He said “For anger and Tourette syndrome.” I looked him in his shy eyes and said, “Welcome to the club.” I then went back to his mother, explained my position on the board of the TSA, and offered my help. I invited her and her son to a kids bowling event I was organizing which just happened to be this Sunday, and told her about the Tic Talk Face book group, which would be very helpful to them.

Everything I do with the TSA, and different projects I do for Tourette Syndrome is great, but I never feel like I really have done that one specific thing, that one thing that I just want to achieve. All the events I do are great, but it is all people involved with TS, and most are connected to the TSA in some way. I spent the last couple of moths organizing a kids bowling event, and it was a huge success.

The biggest success was seeing that child and mother from my husband’s school walk into the event, and watch his child bonding and bowling with other kids his age, afflicted with the same syndrome as himself, watching his mother converse with other parents, and people with TS. I also spoke more with the mother about getting her more informed, and connected to the TSA and a chapter closer to her.

It really is the little things in life. Do I want a million dollars? Sure! Would it make me happy? Yeah, maybe, but not as happy as what I do with the TSA and what I do for the TS community. Six years ago at the age of 32, I was still in the closet with my TS, and had never met another person with TS, but now I have come out myself, helped other people connect with others like themselves and have a ton of friends with TS.

I felt so pleased to look around that bowling alley and see all of these fellow ticcers having fun and being themselves, no fears, and no suppression, just openness and comfort. I watched my husband bowl with an 8-year-old boy with TS, and non-TS friends do the same. It was a great feeling, and an even better feeling to come home and have my husband with tears in his eyes to tell me how proud he was of me.

Despite the horrible beginning of the week, I’m glad it ended the way it did. We have our ups and downs, but we make our lives what they are. What we do, defines us in our lives. I am saddened by the loss of a friend, but I will keep his memory with me. The week started off bad but I turned it around and touched people’s lives, and that’s all I can ask for.

I can sound full of myself by saying I am very proud of myself and what I do, but I think I’m more proud of the younger generation and their strengths. Being in the TS closet until I was over 30, I could never imagine being as open as some of the children I have seen this week. Let’s open those closet doors and open our mouths.

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

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