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 11 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
Hey world, get off the phone!! Technology is killing me. I witnessed a scuffle between two people on the street, because they both ran into each other because they were too busy on their phones. Walking around NYC, you see a majority of the people texting, or talking on their phones. You can even catch someone actually on his or her computer.
I’m not sure how to link this with my TS, but I’m sure I can. People drive me crazy. Is it my social anxiety, my OCD or a mix of both? I hate walking down the sidewalk, trying to dodge all the people on their cell phones that are not paying attention to the world around them. Do they really think this is socially acceptable? Where has technology taken us?
I’m not sure if it is my TS, but when I was younger, I had a thing with numbers. I had a little bit of a photographic memory, now I feel like we’re all turning to some type of technology to do anything in our lives. I don’t know anyone’s phone number except my husbands. Now all we do is press a name and it automatically dials for us.
To this day, I still remember my child hood phone number, grandmother’s phone number, aunt and uncle’s phone number, but now I have to look in my phone to give someone my work number. It’s sad what we have turned into, and who knows where the next step is going to take us.
I suppose I’m fine with most technology as long as it stops slowing the world down and making me late. That’s one of my big things, I hate being late, and I hate waiting. So when people are slowly walking down the sidewalk and not paying attention, there’re making me late. My head goes crazy with these thoughts, even though, for example, I’m never late for work. In fact, I’m usually there 15 to 30 minutes early, left outside waiting for someone who has keys to arrive.
I sit there waiting and the OCD sets in. I stare at the windows of the building across the street while I wait and think, are there people looking out those windows at me? Do they see me ticcing? Do the people in the cars, driving by, see me ticcing. I do this every day before work, and I don’t know why. I know the person with the keys is going to be late, she’s been late every day for the five years I’ve worked there, but I just can’t be late.
I still suppress my tics at work as much as I can. Everyone knows I have TS, but I only really talk about the extent of it with a few people.
I’ve already felt the sting of ignorance from my boss a couple years ago. Back in 2009, I wrote a screenplay that went on to win the 2009 All Access Screenwriters competition. I had a production company interested in the script and I was waiting to hear back from them. I was talking to a coworker about this and my boss overheard me. He went on to say, “Oh, that script that you wrote that you supposedly have Tourette syndrome”.
After a heated educational conversation he still went on to say that he wanted me to have the “screaming” type of TS so I could yell at my clients. He then spent the next hour mimicking someone with coprolalia. I went home that night so furious and frustrated, I considered quitting, but if I did that, that’s what I would be, a quitter.
I walked in the next day and pulled my boss aside. I told him what he had done was disrespectful and immature and if he ever did it again, I would quit. I dealt with enough mocking from kids growing up, I’m not going to deal with it from my boss as an adult. He was actually very responsive and apologetic. So now, it’s just easier to suppress the tics. When I do tic, I still look over my shoulder to see if anyone noticed me. I think no matter how open I am, I will always be very self-conscious about my tics.
Most of my tics are geared to the right side of my body. I have my headshake and twitch, my throat clear and growl, my minimal vocal tics, and shoulder tics, but as for the right side, my shoulder tic is more on the right side, and my arm tics are all on my right side. Years of constant movement isolated to one side of the body. I have noticed that my right Trapezius muscle, the muscle used to raise the shoulder, is bigger than my left. If you look at me straight on you can see it. It’s not that noticeable, but you can tell the difference.
So I go back to previous conversations, what is this disorder doing to our bodies? Thirty years of ticcing has done this to my body, what’s another thirty years going to bring? Is it because I’m right handed, if I were left handed would my tics be more localized on my left side? Who knows, but I have found there are times that I do have to be a bit ambidextrous especially at night when my tics are worse. For example with my right arm tic, if I have a drink in my hand, it’s best if I use my left hand, because otherwise I’m afraid I’ll smash the glass into my face.
I’m getting very excited, it’s a week until my doctor’s appointment with the TS specialist at Columbia University. Who knows, I might be able to get all my questions and prayers answered and I can turn into a boring blob of flesh and bone, that so called “normal”. Sometimes I crack myself up. What would that really do for me? I don’t want to be boring. What would I be left to write about? My favorite pop star, and my melodramatic version of pop culture, I don’t think so. Bubble boy can’t be killed :-)
Until next week, “I’ll tic to you later.”
I loved reading this. I enjoyed it because I felt as though I was reading something that could have been written by my own son. His perspective of the world is so unique and exciting. He is only 5 years old d was diagnosed one year ago at the age of 4. He is so bright and filled with thoughts and questions. I must admit that since I do not share in his over active thinking, I do loose my patience with him and his endless questions. Congrats on the writing success! I look forward to reDing more.