EDITOR’S NOTE: On Tuesdays over the next year, noted Tourette Syndrome advocate Troye Evers will share his “52 Weeks of TS” blog journal with the TSParentsOnline community. In cased you missed the first 7 weeks, you can read them here. For more information about Troye, please click on his name or visit his website.
Can we talk about discomfort, awkwardness, embarrassment, and uneasiness? This is my life in a nutshell. I spend most of my time wondering if it’s all in my head, well I guess it is in a sense. I guess what I mean is, is there some way I can control it more? Would I actually die if I touched the pole in subway car? Probably not, but it is a terrifying thought.
I spoke last week about transitioning myself to not shaking hands and this week I have made that transition. Living in NY, I never realized how many new people I meet on a day-to-day basis. The transition has been an interesting endeavor. When meeting someone I either say, “Sorry, I don’t shake hands, I’m OCD”, or I just blame it on the fact that I just washed my hand and they’re still wet. It’s actually worked out quite well.
Being a hairstylist is a funny and sometimes awkward situation. One of my clients actually asked me this week, why is it that I can play in peoples hair all day but I can’t touch a person’s hand? It’s a little confusing, even to me. I guess one thing is that before I cut someone’s hair he or she is shampooed, so I know they are clean. Another thing is that with the hand touching, I know that person has touched so much with their hand. Whatever, it is strange, but I guess that’s the way it is with OCD.
I have discussed in weeks past ignorance in people, but this week I’d like to discuss ignorance and acceptance. I was on my way to the doctor to refill my medication, on the subway a woman sat next to me, well at first she practically sat on me. Within a few minutes, she was coughing and sneezing instantly putting me in panic mode.
I covered my nose and mouth to protect myself from the floating germs that are now airborne. I sat there contemplating either moving seats, or even switching cars. I tried very hard to suppress my tics, but my shoulder and neck are always the hardest to suppress. I guess the woman felt my arm continually move from my shoulder tic, she turned to me and said, “Do you mind?”
I was embarrassed and shocked, I have never had something like this happen, and I didn’t realize she actually felt me move. “Stop bumping me”. I politely responded, “I’m sorry, I have Tourette syndrome”. She quickly replied, “Just stop!” I was stunned by her response and came back with “Sure, as long as you stop coughing and sneezing all over everyone.”
I glanced around and noticed a couple smirks from the surrounding passengers. The woman got up and walked away, and I continued listening to my music. A few moments later, a police officer came up to me with the woman and said, “Is there a problem here? She said you were harassing her”, I told him, “No, there wasn’t a problem, she seemed to have an issue with my tics, and I told her I had Tourette syndrome.”
I pulled out my wallet and showed him my medical card, he glanced at it and passed it back to me and just walked away. The woman was just left there standing. I’ve never had to use my medical card in a situation like this, but I guess I’m glad it turned out the way it did. Maybe next time that woman, or even anyone on the train that witnessed the incident, has to deal with someone with TS, or any other disability, they will stop and think.
I continued on to my doctor’s appointment with my head held a little higher. There was just a sense of acceptance, but it didn’t last too long. I have spent the majority of my life trying to suppress my tics and it’s exhausting. I am finally at a place in my life where I’m trying to be honest with myself, and people around me.
One of the places I should not feel uneasiness is in the doctor’s office. I was chatting with my doctor, and I did one of my hiccup sounding tics. He looked at me and jokingly said, “What’s wrong, do you have the hiccups? What are you, drunk?” I sat there in shock for a moment and then replied, “No, that was one of my tics.” I also demonstrated a few more of my other tics to hopefully educate him.
I’m excited, but patiently waiting for my appointment with the TS specialist, but also getting a little tired of doctors. Besides my general practitioner, and the TS specialist, I think I’m going to have to see a nutritionist. I’ve been having stomach issues for years, and it’s getting to a point that I need to do something about it.
Also, I feel like I need to be healthier, who knows, maybe with the right diet some of my TS symptoms will calm down. I think I need to get some more exercise in my schedule. I joke that when I get home I do about a half hour of calisthenics, or calisthenTICS. Yes, I am open and honest about my TS, but I still suppress many of my tics throughout the day.
By the time I get home, there is such discomfort I need to release all of the tics I’ve been holding in all day. I’m just more comfortable releasing them all in the privacy of my own home, and I do. I twitch and tic, and fling and flail around unleashing the stranger inside me. I’d be very interested in finding out how many calories I burn with these calisthenTICS. I wonder if there’s an app for that. :-)
It’s moments like the ones I’ve had this week, that encourage me to continue educating people the best way I can. We can’t always assume that people are doing things to annoy us, or despite us. We’re all different in our own way. For me, I’m grasping my differences, and letting them strengthen me.
Until next week, “I’ll tic to you later.”