Tourette's and Driving

    As I have mentioned in previous posts, Tourettes impacts every aspect of my existence. Combined with my co-morbid disorders, there's not a part of my life that isn't touched by this neurological enigma. Lately, but not for the first time, my driving skills and personal endurance are being tested. My tic cycle is in on an upward climb meaning my motor and vocals tics are taking a turn for the worse. To be more specific, when I climb into bed at night after a hard day's work, my body temporarily relaxes into the comfort of my own bed, my safe haven, before letting loose with a barrage of tics and unremitting premonitory urges that I was holding back whilst going about my work day at the hospital. Let me back up a little bit. I've recently begun a new career as a phlebotomist. I love my job. I'm busy all the time. It's fascinating because there's always something to learn, and I get to help people. I've entered a whole new environment which means getting used to a whole new audience to display my tics in front of. Talk about pressure! It's not as hard getting used to ticcing in front of my co-workers. At this point in my life, I'm fairly used to that and if anyone has a problem with it, they can either ask me questions (which I'm more than happy to answer) to educate themselves or they can mind their own business. The difficulty lies in expressing my tics in front of patients who are trusting me to skillfully insert a needle in their arm and withdraw blood with as little upset and discomfort to them as possible. My concern is not my adeptness at phlebotomy itself, but in encouraging confidence in my patients that they are in good hands and I will care for them to the best of my ability. I am still brainstorming on how to best deal with this personal issue, but in the meantime I will simply continue to perform my duties to the best of my ability.
    Anyhoo, back to driving. The stress from any new experience can be tic inducing, let alone a career change. Believe me folks, this one has been a doozy. I'm full time which means a lot of driving to and from work. Add on any additional errands or appointments and you've got a recipe for tics galore. Lately, I've been getting these unrelenting urges to blur my vision or cross my eyes. This also happens while I'm driving which can be 
terribly stressful and disheartening. I start worrying whether I'll have to stop driving for a period of time until my tics subside, because the urge to complete the tic is like an alcoholic wanting that next drink or a smoker craving that next cigarette. Until it's completed just right the premonitory urge does not go away. Even once I feel as as if I've completed the action just so, the relief is only temporary. It can last anywhere from a couple of seconds to several minutes.
    When these tics invade my activities, in this case my driving, I'm forced to slow down waaay below the speed limit and/or pull over. Unfortunately, there isn't always a place to do so, so I'm forced to press on and take it one step at a time. Other tics that accompany me while navigating the roads include: the urge to press down on the pedals as hard as I possibly can, the need to press or pound on the steering wheel, and of course my usual head snapping/shoulder shrugging/bird calling tics that I encounter on a regular basis. The pedal pressing can sometimes be quelled by stomping or pressing my foot on the floor as hard as I can and red lights can be a tourettor's best friend, because one can press down on the break pedal and it's not going to hurt anything because that's what you're supposed to be doing in the first place. I just like to put a little more feeling into it. LOL
    Let me be clear, driving is a privilege and a huge responsibility, not just for those of us with disabilities, but for everyone. Although, we experience extra distractions while driving, as long as we know when to ask for help and be conscientious of when we should and should not get behind the wheel, there is no reason that someone with Tourette Syndrome cannot drive. Have there been times when I've had to put my license away from a while, yes, but that's when my family steps in a picks up where I had to leave off.

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.

Forget Exposing and Start Expressing

    I was very fortunate in that not only was I raised by an educated, understanding mother, but also that I was diagnosed with Tourettes' when I was very young, allowing me to have a longer adjusting period. I remember the day I told my mum what I was experiencing. She was downstairs doing laundry and over the past several days or weeks I had been experiencing urges to shake my arm or torso or to press on objects, such as the table. I went downstairs, perched on the dryer, and told her what had been going on. She had an inkling as to the cause, so we immediately took me took the doctor and I was fully diagnosed and set up with a neurologist at Columbus Children's within a year.
    All through my growing up years my mum supported me and made certain that that I knew how important it was that I knew that my TS was nothing to be ashamed of and that all I had to say to someone was, "I have Tourettes'." At first it was a little awkward to tell people and I even went through a period where I didn't want people to know that I have TS. I felt like I was exposing myself and that if I told them, they may not accept me. I'm 23 years old now and over the past  few years, I have been working hard to become comfortable with having TS - I had to learn that TS is not what I am, but rather it is a part of who I am. Now I can say to anyone with confidence and a smile, "Yeah I have Tourettes'." The important thing to take away from this story is that when one exudes confidence and comfortability people draw on that. In other words, when you're okay with it, it helps them to be too.