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 37 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
My life is a waste of time. Now don’t jump to conclusions and take that the wrong way. The reason I’m saying this is because I waste so much time in my life. I don’t think many people realize how much time is wasted having TS. I often wonder how much more free time I’d have if I wasn’t so focused on ticcing, or suppressing my tics, and don’t even get me started on how much time I waste with my OCD’s. Having TS is a full-time job, and I’m not being paid for it. I need to go to the human resources department and find out where my paycheck is.
The reason I am talking about wasting time has to do with a big event I was part of this week. Yep, I’m talking about Tic-apalooza. I packed all my stuff a week before leaving because I’m so OCD, but because of my OCD, the night before I left, I had to unpack all of my stuff and repack it just so I was sure I had everything I needed.
I was leaving the safety of my home, and going somewhere where I knew I was not going to be able to run to the store and get anything I forgot. Yes, I made sure I had my basic stuff; clothes, sleeping bag, etc. However, that was not my main concern. I needed to make sure I had enough hand sanitizer, Lysol, tissues, and hand wipes. I was headed to the wilderness with a bunch of kids, I was not messing around, and no germs were getting in this body.
As for Tic-apalooza, what can I say? I’m somewhat left speechless. It’s hard to put this weekend into words, but I’m going to try. Here’s a few. Amazing, astonishing, remarkably incredible, miraculously mind-blowing. I guess you could say I had a wonderful time. I was having anxiety about venturing to this camp, and worried about spending time with so many kids, and dealing with my OCD’s, but I went and felt completely at home. There were over fifty campers with TS, and it was such an inspiring weekend.
There was no hesitation in my mind that volunteering to be a counselor for this event was the right thing to do. However, I was concerned because this was the first time I had been a camp counselor. In fact, this was the first time ever going to camp; I never had the opportunity to go away to camp as a kid, which brought on more excitement and trepidation.
It was such an incredible experience to spend the weekend with these brave fifty kids. Friday morning when I arrived at the camp, I was excited when I saw numerous hand sanitizer machines all over the mess hall. Even though I brought enough for the whole camp, it was a great feeling to know that they had some all over the camp.
Soon after I arrived, I was given my cabin roster. Now don’t get me wrong, I love kids, but I was praying that my cabin was going to be kids under 10 or 11 years old. Kids are great, but over 12 years old, you get that teenager attitude. My husband is a high school teacher, and I know how teenagers can be. Guess what? Yep, of course, I get the cabin of kids 14 to 17, but I have to say, they were the most well behaved kids, and we had a blast.
There was really only one problem, which happened at four in the morning. One of the kids in my cabin had an anxiety attack and I had to bring him to the nurse’s office. It wasn’t that big of a deal, what do expect with kids who have TS, and underlying issues like anxiety disorder? The kids were all great, and I could not have asked for a better group.
It was nice, but exhausting to be somewhere where I was able to let my tics out and not have to suppress them for a whole 3 days. I spent most of my life suppressing my tics and hiding from my TS, it was inspiring to see all of these kids owning their TS. I wish when I was a kid, I knew more about my TS, and was able to be as open and comfortable as all these kids are.
Besides my cabin of campers, I did have a couple younger kids befriend me, one of them was 6 years old and the other was 8. The 8-year-old kid was my hero. It was his first time at the camp, and he met his first person with TS only a couple weeks ago. His tics were more on the severe side, but he walked in and just had a blast.
I was talking to him at one point and comparing stories about our TS. I told him I just wrote a book about 17 people with TS and their life stories. He was so excited and wanted to make sure his mother would buy the book. I told him that I would give him a book and autograph it for him. His eyes lit up in such excitement.
Overall, the weekend was one of the best experiences of my life. It ended on a somewhat different note. I flew back to NYC to find out that the airline lost my luggage. Great! However, I did come home to my apartment and only my husband. My houseguest went back home while I was gone. I knew she was leaving, so I was able to say good-bye before I left. I finally have my space to myself. I can return to my normal ritualistic life.
It’s been three months since I was able to have my normal life. After two months with the group of friends on Martha’s Vineyard, coming back and having a house guest for the next almost 4 weeks, and a weekend with over fifty kids, and maybe twenty counselors, I have my alone time again. I came back from camp and spent the day cleaning my apartment, and getting it back to “Troye standards.”
The past few months have been really trying on my nerves, my OCD’s, and my anxiety disorder, but I would not change anything. Life is a learning experience, and I have had a blast.
Until next week, “I’ll tic to you later.”