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.