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 FOUR 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.
It’s a quiet night in New York City — not a normal night, but a night that you think you can walk down the street and let out one of those tics. One of those weird and strange tics. Can you really walk down the street in New York and let out a barking tic without anyone noticing? Nope. No matter what there are still people out there.
Just when you think you’re alone and you fling your head around, or make some weird vocal tic, someone walks around the corner. You see the stranger look at you with that questioning look, asking themselves if they really saw or heard that. They subtly look at you to see if it happens again, and wonder what is wrong with you.
This is the point where you try to cover it up, a violent throat clear as if you’re choking on something, or maybe a swatting at your face as if there was some bug on your face. Did it work? Do they really believe the cover up, or do they just think you’re a crazy person?
We travel a hard and difficult road. As anyone with a disability, or something that makes them different, you can never really understand what they are going through. I can write and write about what is going on in my mind and body, but does that really put you in my shoes? Can you really understand what is going on in a body of someone with TS? Do you feel the fear, do you understand the embarrassment?
I don’t think someone will ever truly understand unless you have actually experienced it to the level of someone with TS. I can only put so much into words and on paper, but the truth lies inside me. The emotional and mental war that goes on inside me sometimes feels like an endless battle, but I continue to fight. I fight with my words and experiences in hopes to educate one person, but that’s only part of the war.
I might be able to dispel some of the stereotypes of TS in one uneducated individual, but I still have to battle what’s going on in my body. Education does not make my tics go away, it doesn’t calm the anxiety, and it is not going to rid the embarrassment I live with. I fight these battles alone.
To fight these battles I find new weapons all the time. It’s almost like a video game; if one weapon doesn’t work, I go into my arsenal to find a new better weapon that might do the job. So far, I have found some good weapons. The fish oil has been working great with my anxiety. It has not rid me completely of all my anxiety, but so far so good. I never thought that I could be or would be as anxiety free as I am today, but I do feel blessed by this.
After living with such anxiety for so long, it is hard to get used to being as calm as I am. I still am having difficulty dealing with the lack of anxiety in my everyday life. As I said last week, I have become much more laid back with my daily rituals. However, it’s a soothing change to not be worried about so much.
The world is not going to end if I wait until morning to put the dishes in the dishwasher, or wait an extra day to water the plants. It’s a beautiful thing to sit in bed for that extra hour and not worry about finishing everything that has to be done before I have to leave for work. If I don’t get it all done, there is always time to do it later.
One of the newest weapons in my arsenal is a combination weapon of acupuncture and Chinese herbs. Does this work? Is this working? I’m still not sure. My acupuncturist said it takes about four to six weeks to see a difference. As for the acupuncture, I have reached that six-week timetable, but I still have not seen any positive changes.
Last week I said that I felt as if my tics actually got worse after my session and actually may have had inflamed muscles in my back causing horrible back pain. I discussed that with her this week and we tried a new path in our journey. Instead of lying on my back and getting needles strategically place on my front, this week I laid face down with needles in my back.
In addition to the needles, she also used an ancient Chinese method of cupping which has been said to be an effective form of deep tissue massage. Did this new path work? Once again, I can’t say. By the time I had my appointment, the back pain was gone, but who knows, it might work in the long run.
I was able to reschedule my book release party this week for A Day in the Life of Tourette Syndrome because of the lack of attendees after the last book release. It was quite a success, and I was able to meet and talk to some of the people that I reached in my battle to educate. Just to hear how much they have learned from my words made everything I do worthwhile.
I know I can’t change the world all by myself, but I can get one step closer with each person I reach. I’m going to continue to reach out to people and educate them. If we all try in some way to educate someone, we will be one step closer to educating the world.
Until next week, “I’ll tic to you later.”