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.

Dear Teacher, Mentor, or Employer:

Dear Teacher, Mentor, or Employer:
       My entire life you lot having been telling me how slow I am, that I need to "pick up the pace." Each time one of you came to me saying something like this, wanting to please you and ever wanting to improve personal performance, I have endeavored to observe and take to heart any little tips that will help me speed up my work. Let me tell you something, when a person has Tourette Syndrome, among other things, veering away from what has become my norm is always a challenge, especially when learning something new. More on that later.
       I remember the first time someone told me I was too slow and needed to "speed it up." It was art class in first grade. The second time was gym class that same year, because even though my knees were hurting me so badly that I could barely walk, let alone run, the so-called gym teacher didn't believe me and insisted that I complete my final mile long lap around the playgroud while the other children stood in line waiting for me to finish. Talk about humiliating. From there it was Girl Scouts, dance class, high school, and every single employer I've ever had.
       You think it's because I'm lazy or don't care very much about my job? Let me tell you that I am probably one of the hardest workers that will come through your doors. I am prepared to go above and beyond my duties. Yes, sometimes it does take me a little longer than your "average" person. Sometimes I ask a lot of questions because I'm a perfectionist and want to be sure I have it right. I am a methodical person who cares more about quality, than quantity and when you ask me to speed up, you are only jeapordizing my efficiency and my ability to produce good, thorough results.
       Having Tourette Syndrome makes me a high strung person. You think I'm lackidasical, while inside my nervous system is constantly running on "high" and the only way for me to keep it in check is to apply extreme focus to whatever task is put before me. You don't see the epileptic fashion in which my motor tics present themselves whenever I'm at home and am exhausted, stressed out, and/or just plain trying to relax. You don't hear the rain forest that is my vocal tics when I'm in the comfort of my own home and can finally release them without fear of scorn or rejection. You barely see the tip of the proverbial iceberg. In other words, it takes a lot of energy and focus to hold all that in and function out in the world and I'm doing the very best that I can.
       You think I like hearing everyone and their mother tell me that I'm too slow? Walk a day in my shoes, taking the everyday criticism that your average subordinate does and add in a constant reminder of the area that you have seemingly fallen short in your whole life and tell me how how that affects your self-esteem and your job performance. Let me know how long you continue to do a good job and, further more, take some pleasure in what you do. Not long... Pretty soon you began to feel smaller and smaller, because nothing you ever do will be good enough and you will never measure up.
       In closing, I want to do a good job. I want to do a great job. I want to accomplish my duties to the best of my ability and be able to go home at the end of the day feeling that I did just that. I'm bound to make a mistake now and then, but I want it to be because of simple human error, not because I was trying too hard to go beyond my capabilities in a failed attempt to keep up with a 'Now Society'.

P.S. Here is a link if you want to know more: Tourette Syndrome

Make Yourself At Home

    When we get visitors, one of the polite things we say to welcome them is, "Please, make yourself at home." It's a sweet, simple gesture that conveys to the guest that you are happy to have them in your home (your private space) and want them to feel comfortable. Although, having tics and experiencing them is the norm for us, a lot of times we still have to get used to them. We don't get to pick and choose which tics we do and don't get; or for how long we'll have to endure them
    I've encountered those who are uncomfortable with or irritated by my tics even after explanation. I suppose they deserve some credit for trying to hide their vexation. However, due to having a nervous system that's always in hyper drive and being a student of human nature anyway, I'm hardly oblivious to most people's feelings. Generally speaking, I am able to obtain a certain amount of objectivity in this area.
    Despite having heard about it all my life, for the first time in 26 years I developed a throat clearing tic. At first I found it embarrassing. I was not used to this sound coming out of my throat outside of the normal reasons for it. Now it was presenting numerous times a minute, often several times in a row. In addition to this, my throat was getting sore from doing it so often. I sometimes (notice the use of present tense) worry that people will think I've got some sort of bug and will make them sick too with all my throat clearing.
    Bearing all this in mind, everyone is susceptible to be startled by the unknown and I'm not faulting anyone for this, as I have experienced this phenomenon myself. I just have the advantage of being exposed to "the unknown" more than most and am therefore less phased by it. My point in sharing all this with you is not only to encourage you to explore and ask questions, but to  help you better understand not just people with Tourette's, but anyone who deals with a "startling" disability. As alien, unsettling, embarrassing, and/or painful it may be to someone watching on the outside, think how much more difficult it is for someone battling it on the inside. A little compassion and understanding can go a long way.

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...