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.