Tourette Conference 2016

Every two years the Tourette Association of America puts on a national conference in Arlington, Virginia for touretters and their families. For several reasons, it was touch and go for a while this time around as to whether or not I was going to get to attend. When I found out that not only was I going to get to go, but that my big sister was going to join me in the experience I was ecstatic. The itinerary for the conference sessions had been posted, our hotel was booked, and the TAA board was kind enough to grant me a scholarship to attend this year's conference. Not to mention, the keynote speaker was Brad Cohen, whom I consider a personal role model for me in the TS community and have long hoped to have the opportunity to meet.
    If you don't have Tourettes or any sort of isolating disorder you may not fully grasp the importance of the camaraderie one feels when being around one's own. I live in a small town where awareness and support is not readily available or in close proximity to me. So when I get to attend this conference it's like a breath of fresh air. I can be weird and ticcy and be at home with others like me who understand and aren't judging me for my tics. Over the past three conferences that I've gone to now, I've made new friends and reconnected with old ones. It's fun to catch up and talk about the tics and little mannerisms we have in common.
    One of the neat things I got to experience this year, being a three time veteran, was seeing the looks on people's faces and hearing the things they'd say about it being their first time to the conference. It made me remember my own first adventure at the Tourette's Conference and how exhilarating it was. I remember feeling so overwhelmed (in a good way) with meeting people like me for the first time,  hearing other people's stories, and meeting some wonderful people from what was then called the Tourette Syndrome Association. I made new friends and for the first time in my life, outside of my own  home, I could tic and not feel like a weirdo or the odd one out. I didn't have to worry that someone would think I was mad, begging for attention or being excluded from groups and activities because the people there understood and dealt with the same things I did and do.
    Let me stress that I love informing people about Tourette Syndrome. I strongly encourage people to ask questions. How else are they going to learn? But the looks, the stares, and the body language that so many think go unnoticed by someone in my position are sometimes more than one can bare. I know when someone is uncomfortable with me. I can all but see the wheels turning and the questions and/or comments churning in their minds and I know that many feel this way as well.
    When I go to the conference and I'm echoing a phrase, sound, or movement that someone else made I know they're not going to judge me or feel that I'm mocking them because they understand. That's the key word there folks: understand. If you never take the time to learn about something or someone and understand the "why" behind their actions or behavior you are sentencing yourself to a life of ignorance and worse yet, you are sentencing those people to a life of scrutiny and exclusion.
    In closing, I went to some very informative sessions. I can't stress enough the joy and comfort of being around my fellow touretters. To my delight, I did get to meet Mr. Cohen. He was just as I imagined him to be. I enjoyed his easy-going manner and his openness to talk about Tourette's and advocacy. I also appreciated him sharing his story with us. It's easy to feel alone with a disorder such as this and having people like Brad Cohen to look up to and feel that sense of connection with is important. Also, to be able to see the things that such people have accomplished can be a ray of hope for those of us who aren't always able to see the light at the end of the tunnel for one reason or another.

School Days Flash Back

    These past few months, I've been taking classes at the local college studying Phlebotomy aka "hospital vampires". LOL Some evenings, especially if I've had a busy day, by the time I get to class at 6pm that night I'm worn out and stressed. This, of course, starts a barrage of tics consisting mostly of grunting, upper body shakes, head snapping, leg jerking, and hand spasms. On this particular evening it was especially bad and I ended up having to take some medication to get me through the class. As we all know, meds take a few minutes to actually kick in, so in the mean time I was left with the anxious task of keeping enough control to where I could focus on my class and yet let my tics out as needed.
    This brings me back to my home-schooling days after my tics came on full force and sitting for any period of time without some extreme mental focus was torture. Fortunately, my mother was a patient, understanding teacher who helped me work through my school days and helped me come up with numerous coping mechanisms such as frequent breaks to stand up, stretch, and get a drink which helped to break up the monotony of staring at textbooks and word problems that my very distracted brain often had trouble concentrating on. Twitching and squeaking or screeching every few seconds or minutes isn't exactly helpful to the learning process.
    Often, during the peak of my tic cycle, my tics would become so frequent and jarring that I was forced to come up with alternative methods to get myself through my lessons. These were the days before I even know about about pressure therapy and weighted blankets.What I would end up doing was scrunching myself down in my chair and pushing my body up against the table as snugly as possible. This served to provide some relief and comfort to the storm going on inside my body.
    Anyway, during this particularly difficult evening of class I was desperately trying to think of something to get me through it, because I was determined to make it through the entire session. Suddenly, it came to me. All those years of sitting at home doing lessons had prepared me for just this sort of occasion. So I scrunched myself down in my chair and scooted it up against the table as close as I could without hampering my ability to take notes and within a minute I began to experience some relief.
    In conclusion, when we become adults, we put away a lot of the things we used to do as children. However it's important to remember that some of those things had a valuable purpose and that doesn't necessarily go away just because we "grow-up".