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...

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?

A Day In The Life

   

       I have Tourette Syndrome. It's this funny neurological disorder where my brain tells my body to make random movements and sounds. I don't need to be "fixed" or even fully understood, just accepted and loved. By nature I'm not someone who easily blends in anyway, but add in the enigma that is Tourette's and sometimes it feels like being under a constant spotlight and not a welcomed one at that. Sometimes I worry about how people will react from new acquaintances, to friends, to... well sometimes even family members.

    It's not a widely known disorder and as I said it's very random. Generally people get up in the morning and, for the most part, know what to expect of their bodies. I, and anyone like me, get up in the morning and wonder what my workaholic brain has in store for me today. Am I going to stick my tongue out at people or cross my eyes? Will my appendages, head, or torso jerk in some spasmodic manner? Will I have any vocal tics, like screaming or squeaking, and if so, how loud will they be and long will they last?

If I were a machine, I’d be an escalator. I tic and tic and the more I let out the stronger they get. I might start out with a few vocal tics, some squeaks here and there, but they get louder and more frequent. I might start out with some slight knee jerks, a flick of the wrist, or a contraction in my arm, but soon I’m spazzing like lightning. Before I know what is happening I’m doing squats and fighting the urge to fall on the floor as if I'm experiencing a fainting spell.       

            I fight the urge not only because it would be embarrassing and possibly painful, but also because I think of all the germs that come from people’s shoes and how it would get on my clothes and hair. This is one of the few times I am thankful for OCD.

I’m walking through the store chirping away like a bird and my knees start to take turns jolting backward into a locked position. Once completed, I move on for a few more steps before one of my arms lurches out to the side and my knees temporarily stop me from taking another step. Is anyone staring? Do they think I’m a freak or just a spaz who likes to call attention to herself?’

            As I get ready to eat my dinner, I get this sensation in my legs that feels like I’m being continuously pelted with rain droplets. It creeps up my body and all I can do is sit there and let a few tics out at a time so that I don’t explode like an overinflated balloon.

            I crawl into bed at night longing for the sweet reprieve that sleep will bring from the constant battering of scrolling messages being sent from my brain to all parts of my nervous system. My body seems to understand that my bed is a safe place to tic. With the likelihood of injury lessened, my head starts to jerk and my eyes roll back in my head. After a few shakes, the tic still doesn’t feel right. So I shake more and harder, still nothing. Finally, I sit up and my head shakes as hard and fast as it possibly can. It's as if I can feel my brain hitting my skull. Now it “feels” right. I lay back down only for the urge to start again. After a few rounds of this and some complex motor tics where the rest of me joins my head in this weird dance, I am able to fight the urge enough to sleep.

Through A Child's Eyes

    Having any sort of disorder can make a person have to grow up a little bit faster. I remember being a little girl, first diagnosed, and not having a care in the world because I was not yet aware of people's prejudice against being different. I knew it on a surface level, but I didn't really understand it. I feel like sometimes as adults we can become jaded due to not only negative memories from our childhood, in which we have come to see a situation for what it was, but also to things we experience once that adult awareness comes in. It's easier to get hurt and to feel anger or resentment towards others. Compound that with all the other things that come to our attention as we traverse through adulthood.
    It's so easy for us to forget that not everything is personal and that people's ignorance and fear of the unknown is often what rules their cruelty. When we were children, hopefully, our parents took care of any issues we had and stood up or spoke out for us anytime we encountered antagonism or animosity from peers or elders. However, once we become adults we have to become our own advocates and that's hard. We may still have assistance from parents, friends, or colleagues, but mostly it is up to us.
    So how do we do it? Not everyone has the innate ability to confront someone who has committed a wrong against them or a loved one. Some are pacifists, some are passive-aggressive, and others still just weren't taught how to stand up for themselves. I am a pacifist and sometimes when I am confronted with situations such as these I get nervous, shaky, and/or forget what I want, need, or should say. The key is to take baby steps. Start with little things such as calmly telling someone that what they said was inappropriate. Also, make sure that you have an advocate go with you or practice what you would say in certain situations or what you are going to say if a situation has arisen where you need to speak up. Note: It's okay to have cue cards to help you remember what to say. Don't allow the person to interrupt you and if they do, persevere. Dealing with these things comes easier with time, practice, and maturity.
    Lastly, it's important to remember that even if you do have to confront someone, you don't have to do it in an insulting or threatening manner. It can be done without screaming and yelling and spoken in a calm, yet firm voice.

Person > Label

    Each and every case of Tourettes is unique, but we all have similarities, a connection. Sometimes I feel like I want to be separated from TS and OCD, to just be me without having to worry about what I look like when I'm ticcing in public or what people think when I make funny noises or get upset over something that may seem trivial to them, but is part of what makes my day go on.
    I just started a new job and it's hard enough being someone who isn't traditional by nature, because people don't accept different and they're intimidated by it. So it makes it that much harder having to tic in front of them. Every time I go into a new setting I have to go through the steps.:
-Start with facial tics, because they're less noticeable.
- Next a few neck and arm "stretching" tics, because they look natural right?
-Then most of my quiet resolve dissolves into upper body shaking tics and some lower body if I'm standing.
-Then come the ones that may seem a little more embarrassing or scary looking: sticking my tongue out or hitting my arms against my sides.
-Finally, the pièce de résistance.......: What do I do about my vocal tics??? I don't get them very often, but when I do, there's nothing subtle about them. Ever since I've grown up I think I've struggled more with those and have yet to come to terms with them. I developed a little bit of a stutter now and again and I do bird calls and random noises.

    I recently started a new job and I'm in this 15x20 room training with over a dozen other people and I tic in front of them all the time. I went through all the steps, only treading lightly on that last one, but I've done it. I tic and I sign in front of them and I don't care. It feels so good and it makes me feel like I'm just a person, not a label. When I'm able to do that, I can get out of my own head and see other people and things. Although I have to be pro-active in said process too, I couldn't do it without God and my family.

Check out this guy on X-Factor who has TS and OCD. Here's the article and video. It takes a great support system to have the courage to do what he did. :)

Mimicry: the Finest Form of Flattery

        I recently got an email from TSA announcing that this film would be airing on the Hallmark channel. I'd heard of it. but never had the pleasure of watching it. I was hesitant about watching it, because I was nervous about the effect it would have on my tics since being highly suggestive comes with the TS territory. However, at this point in my life when I'm working on starting a career myself, learning about other trail blazers like Brad Cohen is an important part of maturation.
    According to IMDb Front of the Class is about: Despite suffering from Tourette's syndrome, Brad Cohen (James Wolk) fulfills his lifelong dream of becoming a teacher in this touching Hallmark Hall of Fame production based on a true story that shines a light on this often misunderstood disorder. As Cohen grows up, he must face friends and classmates who don't realize that he sometimes cannot control his outbursts, and a father (Treat Williams) who seems unwilling to accept his son's condition.
    Despite my concerns I was excited to watch the film. It was about someone with TS and how he had used determination and fortitude to accomplish a goal that many had thought impossible. Don't worry, no spoilers here! While to the experienced eye of someone with TS there were a couple discrepancies, James Wolk's portrayal of Mr. Cohen's case of TS was amazing and looked completely unrehearsed.
    While watching the Front of the Class, I experienced several emotions. Empathy, because I understood some of what he was going through, happiness during the good and funny parts (of course), and some stress. Even though, for the most part, I was engrossed while the film played, when the commercials came on, that's when the tics along with built up stress occurred. I had bad vocal tics like squeaking, yelling, and a sort of loud whining. The motors tics I experienced surprised me the most. I had several head shaking tics and one where (I was sitting on my bed at the time) I would fall over on my side and get back up repeatedly.
    Part of having this disorder includes the brain's ability to record observations and events and transpose parts of them into the form of a vocal and/or motor tic. That means a person can develop a tic sequence simply from observing others whether from a movie or real-time events. This doesn't have to limit what a person with TS watches or their life experience as a whole. Just keep in mind that if something has any sort of impact on you, it may translate into a tic later on. In this case it's important to remember that tic cycles are temporary and even though there may be times when one has to avoid a certain situation, it doesn't mean it's permanent.

Laugh Out Loud

                               So what tics do you have???

                                        Note: I do not own this photo. Borrowed from http://tourettestoucan.tumblr.com/post/52585477270/so-what-are-your-tics


    Ever have one of those laugh or cry moments? Tourette Syndrome can be frustrating, overwhelming, maddening, etc. but it can also be funny or silly. I've had people ask me this question soooo many times and I'm thinking: Where do I start? Do you want the manual? I love the above meme because it illustrates the answer to this question so perfectly. What I usually do when asked that sort of question is just rattle off the first dozen or so that come to mind.
    So the meme out there these days for all of us Touretters is Tourette's Toucan! Some of them are funny or awkward, some are just irritants that we experience, and mostly all of them are relatable. If you click on the link attached to the site name and click on "Memes only" in the bottom right hand corner, you can take a look at all of the ones posted so far, but for today I'm going to name a few moments of my own. If you don't have TS or don't know a whole lot about it, some of the memes may be confusing, so feel free to ask!
     I remember a time, not long after I was diagnosed, when I was lying on the couch having what's called a complex-motor tic. I was having a tic where my entire body was periodically jerking and shaking every which way. At one point I ticced so hard I fell off the couch laughing. Thinking back on it, the whole scene was kind of funny, but having those complex tics are not always fun, they can be downright aggravating and frustrating.
    In fact, I've had many moments where I break down and cry because my tics are so overwhelming and "in my face" that I don't feel like I can cope on my own. I hope that everyone out there has some sort of support group or confidante they can lean on and draw strength from when their own is waning. The important thing to remember is that those hard tic phases don't last and the cycle will calm down and change just like any other. Lastly, please remember one can always contact the Tourette Syndrome Association when at a loss for answers. This is why promoting awareness and understanding is so essential, so that in the future there will be more and more resources available to the TS population.

(I made this one myself) This has happened to me more times then I can count lol I used just automatically laugh and say , "Yeah!" but these days it's pretty much automatic to say no without any further explanation. lol

Happy Father's Day!!!

     It's rainy and chilly outside. Unusual weather for this time of year in the Northern Panhandle, but I don't mind. I've mentioned several times how my mum has been a great help to me throughout my years in dealing with Tourettes. I've talked about how she's supported me, guided me, taught me to stand up for myself, etc, but today I want to talk about my dad.
    Whatever mysterious gene that Tourette Syndrome comes on came from his side of the family, along with OCD. Several of the oddities that I've experienced over the years, he's gone through himself. Having TS can be very lonely when you're the only known one in the family who has it, so it's kind of cool when we find something else in common. Throughout my college career, as I've mentioned before, I've experienced some prejudices that I didn't know how to or couldn't deal with on my own. My dad has come to class with me when I felt like I couldn't be alone, and he's gone to bat for me when someone wouldn't give me the accomadations I needed or didn't seem to "get" that having Tourettes can be difficult and can sometimes make certain everyday activities hard to deal with such as: ticcing in public, standing or sitting still for long periods of time, being quiet, sensory processing, etc.
    My dad, my mum, and various other peoples have been responsible for the on-going process of learning to be comfortable with myself and my tics and being able to stand up for myself. I don't believe in being quiet or sitting on the sidelines while someone gives me a proverbial beating. I don't always know what to say, but, chances are, someone else does. The important thing to remember is each time someone sticks up for me and/or I stick up for myself, and promote Tourette Syndrome awareness, I've gained another notch in my belt of advocation. Being an advocate can be something as simple as telling someone you have Tourettes, because you're showing that you're not ashamed of who you are.
    I had one incident at a place of employment when I was a sophomore in college where a supervisor got upset with me for calling home because my tics were so bad that I couldn't be still for a second and I didn't know what to do. This was also during a time when I was less than okay with expressing my tics in public. When I tried to explain that I had obtained permission to call and that I had TS, he refused to listen and told me to go home. Try as I might, I couldn't hold back my tears. My mum who was on the phone this whole time listening to the exchange told my dad what was happening and within fifteen minutes he was up there speaking on my behalf to the man who had committed the transgression. If it hadn't been for my dad that day, I don't know what I would have done.
    In closing, I just want to remind everyone that everyone out there who has Tourette Syndrome or knows someone with does is covered under that American Disabilities Act. That means no one is allowed to discriminate against you because of your disability.

Here's The Deal

    Take it from someone who has been there. Seeing someone tic can often look/be funny, silly, unnerving, weird, etc. Sometimes I'm not even sure what to make of myself, especially if I'm dealing with new tics or a new set of tics. Every time I go out in public I play this mental game of battleship. How bad are my tics today? How much am I able to tic in front of people. Do I let people see my old tics, let alone new ones? What happens if I have a vocal tic? All this and OCD too??? It can be exhausting.
    People don't always know how to approach someone with Tourettes or what to do if they see a person ticcing and that's understandable. It's nothing to be ashamed of, because often I, and others like me, am often more frustrated or confused then anyone looking in from the outside. So, what does one do when confronted with someone who has TS?

1. When talking to someone with TS, don't be afraid to look at them when they're ticcing. You're having a conversation, so it's perfectly acceptable to make eye contact.
2. Don't be afraid to ask if you are genuinely curious. Say something like, "Excuse me, I couldn't help but notice, do you have Tourettes?"
3. Do NOT ask ask them to stop ticcing. We literally cannot help it.
4. Remember that not everyone with TS is going to start spouting profanities. -Only 10% do and even they aren't guaranteed
5. Someone with TS needs to be included in groups, not excluded or isolated because they're different. Make it clear that they're welcome.
6. People with TS are naturally tense for a number of reasons. Do what you can to make them feel at ease.
7. Don't single someone out who has TS by pitying them or continuously asking them if they're okay.
8. Everyone has problems or something they need help with. If someone with TS is asking for help or special consideration, assume it's because they really need it, not because they just want attention.
9. If you're friends with someone with TS, learn to be accustomed to their tics, rather than constantly being startled or disconcerted. Body language alone speaks volumes. If we constantly have to worry about how our tics are going to affect whomever we are with, it puts us in a defensive position that prohibits us from relaxing and being ourselves.
10. Learn to accept others as they are with all their unique differences and challenges. Being able to coexist with others in a peaceful and meaningful way is invaluable.

This picture is not my property.

Proud To Be Me

    In all walks of life there are many people who would have one conceal certain things about oneself in order to preserve some social fantasy that they keep in their head, some picture that they harbor of how people should and do view them. I have touched on this subject before, but my heart especially goes out to those who are made to feel ashamed of their disorder in one way or another. This doesn't just apply to those with Tourettes, but also those who have other medical issues that can be considered a social stigma. I'm not saying anyone has to broadcast their disorder or should be known by it, but, they should not have to feel as if they are an inconvenience.
    I was blessed to be raised in a family who let me be myself with and without TS and was encouraged instead of put down. I was always told that I would be able to do wonderful things, not just in spite of, but also because I have TS. I would be able to relate to people in a way that not everyone else can and I would be able to see people in a different light, because I, myself, had been there. I have experienced my own share of negative encounters with people because of the simple (or not so simple) fact that I have TS - some of these I have shared with you.
    You may argue that learning of a person's disorder can change the way some people think about them or the way they treat them and you would be right. I have encountered such ignorance through my own eyes; but really, do I want to be close to and hang around people who think that way with such unwavering diligence? When I have children someday there is a 50% chance that they will be born with Tourette Syndrome and/or one of the other co-morbid disorders that I have. Society will do the job of making one self-conscious, ashamed, embarrassed, etc. about one's disabilities. Therefore, it has no place in the family. To anyone out there with children who suffer from such things or perhaps they themselves do, I would say, your disorder does not define who you are, but it is an integral part of who you are. Learning how integrate your "TS self" and how to live harmoniously with it instead of constantly fighting it is vitally important not only for your own peace of mind and body, but so that you may also be an example to others.

HAPPY TOURETTE SYNDROME AWARENESS MONTH!!!

    With my college graduation coming up in three days, this seemed like a good time to share a couple stories. Now, you may have noticed that I haven't posted for a week, but that's because I was getting ready for this week's post and of course GRADUATION. Yay! Going through college with Tourette Syndrome has definitely made for an interesting ride. All the hard work I have put into my college career has paid off, but it hasn't always been easy. I won't say it hasn't been without its rewards though.
    When I first started college, like most students, as freshman at West Liberty University I was living in the dorms just trying to acclimate to my new life. I had been going through a couple years of suppression where I had worked so hard to disguise my tics, that I couldn't tic if my life depended on it. This was all due to feeling humiliated at anyone seeing me tic, as many of them can be unsettling or distracting. It was as if that part of my brain had temporarily gone somewhat dormant to the point that if I did feel the need to tic, it felt alien and I almost couldn't. (I don't recommend this) So, the most I experienced were facial grimaces, crossing of the eyes, and scrunching up my facial muscles. I made a few friends, even met my first real boyfriend, and did pretty well in my classes.
    During my sophomore year, I had begun to dislike dorm life and wasn't doing as well in school as I needed or wanted to. I missed my family (pets included) and I didn't like being away from everything, so I began to explore the idea of switching schools. I knew this would mean a longer ride and with choosing Wheeling Jesuit I would become a commuter, an idea that I was actually kind of excited about. When I entered WJU in spring of 2010, things began to look up, but it was only the beginning of one of the biggest challenges of my life.
    In the spring of 2011, something got triggered in my brain and my tics came back in full force. It was was like I was that kid again who looked like they were constantly hyped up on sugar and caffeine. I began seeing a therapist to help me cope because ticcing in front of people, let alone in a small classroom, was no easier than it had been in high school. In March of 2012 I attended the National Tourette Syndrome Association conference in Arlington, VA. I met people of all ages who dealt with the same things I did. I wasn't alone in my TS anymore and that felt good. Long story short, I was inspired to do a TS Awareness Campaign for my undergrad senior project. It wasn't readily accepted, but I stuck to it and was met with success; even won a couple awards!
    It was a long, arduous process to be able to tic comfortably in public. I took baby steps and LOTS of them, but today I can tic just about anywhere and as soon as it's over I resume "normal" activity as if nothing happened. I've noticed it seems to make most people more comfortable to see that it doesn't bother me or at least doesn't appear to bother me. There are still times when I struggle to tic in public. I have to remind myself everyday (especially if someone looks at me weird or is obviously startled by my tics) that it's not about them, it doesn't matter what they think, and without that part of me, the TS part, I would be a totally different person then the one I am today. So, take it from a very soon to be college GRAD: "We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face... we must do that which we think we cannot." - Eleanor Roosevelt 
HAPPY TOURETTE SYNDROME AWARENESS MONTH!!!

Weird or Just Normal?

    I've heard many people with different neurological disorder mention weird and freaky symptoms that can be somewhat unsettling no matter how many times it happens. Sometimes these occurrences cause the person the feel anxious, scared, worried, etc. They can also make one feel a change in perception or that they're "losing it". Unfortunately, doctors don't always have the answers or at least one that you would like. Often people suffer in silence thinking there is nothing they can do.
    Ever since I was little one of the weirdest and most unsettling symptoms I've experienced has been what I've dubbed "the fast feeling". To this day, I'm not entirely certain what it is, although from brief research I have come to believe it takes place in my frontal lobe, possibly what they term a micro-seizure. Disclaimer: This is my own observation and should not be taken as a substitution for medical advice.
    Anyway, enough with the technical stuff. This fast feeling would come on somewhat subtly and quickly. One day I was doing dishes and fixing something to eat for lunch. All of the sudden, all the sounds I heard and the movements I did or observed changed in perception. Everything sounded really loud. I began to feel anxious. Every time I moved or someone around me did, it felt as though it were happening at an accelerated rate and yet somewhat slow at the same time. I wanted to stop moving and just hide under my blankets with my eyes and ears covered until everything quieted down and went back to normal, but I was afraid, if I stopped doing "normal" tasks, it would get worse and I wouldn't be able to handle it. So, I kept going and with some intervention and support from my mum, eventually things resumed as usual and it stopped as quickly and subtly as it started. I've had episodes like that that lasted from five minutes to an hour.
    Fortunately, it decreased in frequency as I got older and now it only happens once in a blue moon. It's scary when that sort of thing happens and it's even worse if you happen to be alone when it does. My point in telling you this story was not to scare anyone or make them feel sorry for me, but to let you know that, when these "weird" instances happen to you, you're not alone. It doesn't necessarily mean that you're "losing it" or that somethings horribly wrong. Sometimes the brain glitches and it can take a bit for it to reset. Mine is only one instance, so feel free to share your own story and comments. :)