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.