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. :)