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".
 

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.

Make A Decision Already!!!

    People in my position can often be terribly indecisive. I attribute this to the constant stream of "tic messages" being sent to and from my brain, OCD, and sensory processing issues. This is something I've struggled with all my life and had to have coaching in growing up.
    This issue can be rather irritating for those in one's company, but what they don't realize is that it's also irritating, painful, and often embarrassing for you. Allow me to paint a picture: I walk up to the counter at Panera Bread. There's so many tasty choices. I have certain self-imposed restrictions or road blocks such as: certain things are better to have for lunch than dinner and vice versa; I had A for breakfast, so I need to have B for lunch to balance it out. Those are the basics. Then there's: I had A last time I was here, so do I have it again or do I have B, or the new something C? Take out the one that seems least favorable. I then decide whether or not I want "something new" or something I've had before The "something new" sounds really good, but will I like it and what about the thing I've had before? I already know I like it and I don't know when the next time I come here will be or what I'll be in the mood for then! I can feel the pressure from the waiting cashier and my dining companion (if one is present) to make a decision. They might as well have thought bubbles over their heads saying, "Just pick something already!"
    This is just one instance where I'm required to make a decision and experience mental "Shoots and Ladders" in the process. This happens in shopping, running errands, and just everyday tasks. With those I'm comfortable with, I will freely ask their opinion. Sometimes it's because of indecisiveness and other times it's simply because I genuinely value what they have to say. However, when one has a reputation of being indecisive, sometimes people can't tell the difference. They have their issues they're dealing with and sometimes their indecisive themselves. I do realize this and sympathize. Sometimes I think it's funny that I have this issue, because when someone asks for my opinion on something they're waffling about, I don't always have trouble helping them choose. This is partially due to objectivity and the disconnect. Now if I could only apply that to myself...

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.

Tourettes In Society

    Tourette Syndrome is an extremely visible and audible disorder. Whether I'm flinging my arms around, jerking my knees backwards, or screeching like an owl it's impossible to disguise as anything other than what it is. I've always been a reasonably uninhibited person; however, as I've gotten older and my tics have grown in severity and frequency I've had to become even less inhibited. It's a long, daily struggle for those of us with who deal with this disorder.
    I don't get this so much anymore, but when I was younger and would go into stores I would be having shaking tics. I would go past a cashier, a greeter, or someone else who works in the store and they would ask if I was cold (sometimes this would occur in the middle of summer). In the beginning, I would just sort of laugh, embarrassed and nod my head. Then I got a little bolder and would occasionally say, "No, it's a tic. I have Tourette's." This statement of course meant nothing to them and was usually met with awkward silence. Lastly, I came to the stage I'm in now where if someone presents me with such a question, I answer with simple, blanket 'no.'
    One of the things I'm learning these days about having TS is that less is more. Further explanation is not always needed or required. One of the perks of being an adult with TS, is that people, particularly those in authority, have less of an annoying habit of calling you out on your tics or asking you to stop. I can't tell you how many times my mum had to go to bat for me and tell someone too ignorant to ask what was wrong, that her daughter had Tourette Sydrome and couldn't help the screaming tic she was dealing with at the time.
    When my tics and/or my sensory processing is out of wack, (i.e. light, sound, etc.) periodically I am called to rely on some sort of aide whether it be noise-canceling headphones, indoor shaded glasses, or something more obvious such as a rollator. The rollator is something new that I've added to my repertoire of aides that assists in not only supporting my body when jarring tics emerge, but also when a "fainting" or falling tic occurs. These aides are invaluable at times, but using them does take some getting used to.
    Sometimes suppressing tics is something those of us with TS are called upon to do. This can be due to too much stimulus, a strange environment, or just feeling generally self conscious. Unfortunately, holding our tics in is not only extremely difficult and stressful, but allows for co-morbid disorders to come more to the forefront (See: Post on Co-Morbids). Also, when we finally do decide to let our tics go, it can be likened to the eruption of Mt. St. Helena leaving destruction and pain in its wake.
    My environment is ever changing, so it's not always easy to just let it go. Sometimes tics are held in subconsciously which can have detrimental consequences. A person with TS has to be creative in learning when and how to express a tic. It's a process and not an instinct that requires the understanding and cooperation of those around you. Learning to understand one's body and the messages that are being sent it a vital and never-ending process.

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?