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.

Ticcing To My Heart's Content

    When I was a kid being "self-conscious" hadn't occurred to me. Whatever tic came my way I released without restraint, vocal or motor. I had tics in my legs where I would be walking and have to stop and stretch the adductor muscle in my thighs. The urge to do this would pop up about every ten to twenty steps. I also had this piercing scream that lasted for about a .5 second burst. I would scare and startle people in the grocery store all the time, but it never occurred to me that it was something I should be embarrassed about until a moment in my preteen years when a girl in dance class asked me to move over because my slight shaking tics were scaring her. Despite my offering up an explanation, she insisted on increasing the space between us. From that day on, I was aware that I had Tourettes and was different. I began to care what people think which led down a road of extreme tic suppression and anxiety that I have spoken about in past posts.
    Once that happens there's no turning back. These days my movement tics can get pretty interesting. Along with my usual shaking and facial twitches, my wrists will lock up for a few seconds stopping me from doing whatever task I'm working on. But what has been most interesting is my vocal tics. Nothing about me is quiet or subdued. Regardless of the tic it always comes out loud and forceful. The ones I express in public, most of the time, are nothing compared to the ones I share at the breakfast table. When at work, Church, or just running errands I emit unrelenting little squeaks, chirps, and trills. When at home, especially at breakfast when I'm in a good mood the most unusual sounds will come out of my mouth. It can get rather comical. I do a series of wolf howls, cat trills, and dog roos that make the household animals cock their head as if to ask me, "What's up?"
    One of the best thing about ticcing around my four-legged friends is they don't really mind my tics and aren't critical of my ticcy actions. LOL I squeak and my tuxedo kitty, Maggy, trills and just looks at me with those emerald colored eyes of hers, asking to be petted. Sometimes when I launch into howling mode, my dachshund will look at me with concerned eyes and start howling along with me, which only serves to encourage me. Not only will other people's sounds and movements set me off, but so will my own. If something is especially palatable to my eyes and ears I am guaranteed to repeat it without warning.
    Often a tic can be so spontaneous there is no premonitory urge or "itch to tic". This is part of the reason why Tourettes becomes so integrated into one's being. For us, barring the bad episodes, ticcing comes naturally and feels so as well.

Pressures of Being An Adult

    As a child I couldn't really identify with this statement. It wasn't that I couldn't see the people who didn't accept me for who I am, I simply wouldn't. Now as an adult, it seems that I notice people's disapproval more and more, not to mention, the pressure I put on myself to be an upstanding, accomplished adult. I hide some of my tics around family members fearful of disapproval or misunderstanding. As I've mentioned in the past my immediate family has always been very supportive, but sometimes even around them I get self conscious, because "watching your back" is a hard thing to turn off. I hide many more in public these days. Part of this, I think, results in a change in the way I feel about myself. As humans change is only natural. I feel as if I've entered a new stage in my life and the pressure to do certain things and be a certain way have only increased.
    I recently started a new job and did not convey to my boss that I have Tourette Syndrome. Usually I do, but this time I want things to be different. A few days after I began working there we had a night where things were rather quiet and as you may or may not know, when it's quiet those of us with TS always feel the need to fill that silence with our vocal tics. The urge was so overwhelming that I wanted to curl up in a ball and hide. The next day I broke down in tears telling my mum and sister what had happened and how I felt about it. Every day, I'm worried that my tic cycle will get worse or my individual tics will be so terribly obvious that someone will take notice.
    This concerns me because I believe they will not want to give a promotion to someone who seems, in their eyes, to have a disability, that they will see it as a weakness. Also, I have experienced discrimination and humiliation in past jobs due to my tics.
    As always I'm experiencing new and different tics all the time. Just when I've adjusted to one, another one joins the club. I worry that when I tell people that my urge to throw my pen, phone, or other object onto the floor is just a tic, they won't believe me. They'll think I'm just making trouble. After all, I'm an adult and adults don't do things like that or make sounds that sound like the beginnings of temper tantrum which in reality is merely stress coming out in the form of a vocal tic.

Tic Cycle Update

Hey! So, something a little bit different - a video! One of the reasons I decided to do this is I fee like so much of the time people don't actually get to see what Tourette's looks like. So, this is a way for me to mix it up a for you to get a better idea of what TS is like. Feel free to comment and let me know what you think!

Here's the link I promised: What Is It?

Intro

Hey Everyone!
    Welcome to Tourettisms -Observations from an Irish Princess. For those of you who don't know my middle name is Erin, which means Princess of the Isles, hence the name for this blog. I will be posting as least once a week, hopefully more once this takes off. If you have any questions, please feel free to ask.
    My first topic is about a Tourette Syndrome (TS) Awareness Campaign I'm doing in the Ohio Valley. I am taking the message to a number of audiences, because I feel that it is important that we get the word out there about what TS really is and how to deal with it. Back in March of 2012 my dad and I went to the National Tourette Syndrome Association (TSA) conference in Arlington, VA. I encountered others with TS and many supporters. It was a great experience and I can't wait to go back in 2014.
    Have a blessed day!