VIDEO: 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!

https://www.youtube.com/watch?v=Mt4GVHw25QE

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 toward 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 OK 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.

Mimicry: The finest form of flattery

pic18456I recently got an e-mail 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

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?

SO WHAT TICS DO YOU HAVE?

tumblr_inline_mnn48ppweM1r1ma4eI 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! Continue reading

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 accomodations 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 ongoing 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 OK 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 15 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

TS Awareness MonthTake 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? Continue reading

Proud to be me

941343_188828461271991_1392837637_nIn 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.

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. 🙂

Read more from me on my Tourettisms blog!

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) Continue reading

Being comfortable yourself with TS can make others comfortable with it

I was very fortunate in that not only was I raised by an educated, understanding mother, but also that I was diagnosed with Tourette when I was very young, allowing me to have a longer adjusting period.

I remember the day I told my mum what I was experiencing. She was downstairs doing laundry, and over the past several days or weeks I had been experiencing urges to shake my arm or torso or to press on objects, such as the table.

I went downstairs, perched on the dryer and told her what had been going on. She had an inkling as to the cause, so we immediately took me took the doctor and I was fully diagnosed and set up with a neurologist at Columbus Children’s within a year.

All through my growing up years, my mum supported me and made certain that that I knew how important it was that I knew that my TS was nothing to be ashamed of and that all I had to say to someone was, “I have Tourette.”

At first, it was a little awkward to tell people, and I even went through a period where I didn’t want people to know that I have TS. I felt like I was exposing myself and that if I told them, they may not accept me. I’m 23 years old now and over the past  few years, I have been working hard to become comfortable with having TS — I had to learn that TS is not what I am, but rather it is a part of who I am.

Now I can say to anyone with confidence and a smile, “Yeah I have Tourette.” The important thing to take away from this story is that when one exudes confidence and comfortability people draw on that. In other words, when you’re OK with it, it helps them to be, too.

A little about me, since I’m new to the blog: I was diagnosed with Tourette Syndrome when I was 7 years old, a highly impressionable age at which a person is still learning rudimentary behavior. So instead of concerning myself with childish pursuits, as a typical 7-year-old would, I became a student of life with Tourette, a much more complicated endeavor that has continued into adulthood.

Now, having graduated from Wheeling Jesuit University with a B.A. in Professional Communications, I am continuing my study of life with Tourette, as well as pursuing a career as a wedding planner. Thanks for reading!

Read more from me on my Tourettisms blog!