Friday, May 30, 2014

5 Things I Want Everyone To Learn For Tourette Syndrome Awareness Month

1. Don't feel sorry for me. 

Don't feel sorry for me, because I sure don't. Sure, living with Tourette's has it's challenges. I wake up every morning knowing that I will move through may day jerking my head, rolling my eyes, hitting myself in the chest, and making loud noises among many other things, but this is my normal. Tourette's has given me so much more than it has taken from me. It has given me an amazing community of people who I will never take for granted. I would have never met my amazing camp twitch and shout family, the people who I work with and look up to so much from the Tourette's research lab i'm a student in, and my Tourette's Syndrome Association friends if I didn't have TS. I am so lucky to have all these amazing people in my life. Tourette's has also given me confidence. Having to explain why I tic to the people around me is now second nature for me. I don't mind explaining or answering questions and I love educating people about TS. In fact i'm going to be educating 200-400 medical school students about Tourette's in September! Now there's a confidence booster. Having Tourette's is a unique experience and the opportunities that have come from having TS have enriched my life more than I would have ever known. Like one of the nurses from camp twitch and shout said "people with Tourettes are not the ones that are disabled in our society, it is the “normal” people that are handicapped in the depth and beauty of life."

2. Please don't stare. 

I understand. You hear a strange noise behind you and you're going to turn around to find out what it is. That's okay. That's normal. What's not okay is if you hear me making repetitive noises and twitching and you keep staring and watching me. You don't need to know my exact medical condition to realize that I can't help it and that's it's not the right thing to do to keep staring at me. It makes me feel uncomfortable when people stare at me because of my tics in the exact way that you might feel uncomfortable if someone was staring at the ketchup stain on your shirt that you know is there but you just can't get out. Okay, so maybe it's a little different, but you get the idea.

3. I just want to be treated like everyone else.

Most of the time, I feel pretty darn normal, so that's how I want you to treat me. I go to classes, hang out with my friends, go out to eat, and live in the dorms just like every other college student. I might twitch a bit more along the way, but i'm just as smart, just as capable, and just as motivated as any other person. I won't let me tics get in my way or stop me from doing the things I love and perusing a degree. A lot of the time, I forget I have Tourette's and I just go about my day like anyone else. When people treat me any differently it surprises me. I don't feel impaired in any way. I might be different, but everyone is different in one way or another.. Being different is normal. So want to be treated the same way as I feel, normal.

4.  I don't know the word "can't", so please don't use it with me or with anyone else who has Tourette's. 

I don't think I can be any angrier than when I hear stories of people with Tourette's being told they can't do something. People with Tourette's can do anything that anyone else can do. I am a very modest person and I don't like talking about my accomplishments or anything that could remotely be perceived as bragging, but I will put those feelings aside for now so that others out there can know that people with TS can do anything they want to. Ever since I was little, I was told "you can do anything you set your mind to". I took that message to heart. Even though my body jerks violently and I hit myself many times throughout the day, even though I make noises I can't control, even though I shout out random words like "No" and "Woof", I have never known the word "can't". So here are some things I have accomplished, not in spite of my Tourette's, and not exactly because of it, but with my tics always along my side.

1. I graduated high school as the editor-in-cheif of the school literary magazine and having published many poems
2. I now attend a renown university that is ranked #14 in the nation
3.I am a Philosophy-Neuroscience-Psychology major with a focus in Cognitive Neuroscience
4. I work as a student research assistant at the medical school associated with my university
5. I have presented my research at a symposium, published my research, and am continuing to work towards more findings and publications
6. I am a counselor at camp twitch and shout where the kids look up to me and I look up to them :)

And for some other things that are more trivial, but none the less important!

7. I have my drivers licence and drive all the over city!
8. I live in the campus dorms during the school year just like every other student
9. I belong to clubs, to a sorority, and am loving the college life!

5. Don't be afraid to ask questions! 

If you have a question about Tourette's, please don't be afraid to ask! I'm more than happy to answer questions about what Tourette's is, how it effects me, and what it's like to live with it. I would much rather have someone ask me about something they're wondering about rather than make an assumption that isn't correct. Even if you think your question is silly, trust me i've heard it all and your question won't offend me. Sometimes I feel like people walk on egg shells when it comes to my Tourette's. Tourette's is not something you need to be shy about around me. You don't need to be shy about asking questions, talking about it, or even laughing at a funny tic. My favorite thing is when I can talk about Tourette's like it's normal, because then I know it's okay and i'm accepted. Please don't tip toe around the subject because that just makes me feel more self conscious. What helps me feel the best is when I can just be myself, and being myself includes Tourette's. It's part of me just like being a girl is part of me.

Thursday, May 8, 2014

My Falling Tic is Back

So my falling tic is back again.....but this time it's back with a vengeance. I've never really had the tic this bad. All this morning I was dropping to the ground suddenly and forcefully and quite a few times I laid on the ground for a minute or so afterwards unable to move. I also scratched up my knees a bit this morning as well as a result.

In the afternoon I went back to campus to return my books and to see my friend since she's staying an extra two days. We decided to get get lunch at the zoo and walk around afterwards. I decided to give her a heads up that my falling tic was back, especially since she's never seen that tic before. She's really used to my tics overall since I spend a lot of time with her and is pretty great about them.

When I told her about that tic she said she thinks it would be cute. I laughed at that and said not really! It hurts!!

Overall at the zoo I dropped to the ground about 4 or 5 times. Each time I managed to get back up pretty quickly but it did hurt! The first time I did it, my friend said it actually was cute because it looked like I just decided to sit down on the ground really fast. The second and third time she looked back and asked if I was okay and I assured her I was.

Overall by the end of our zoo trip, my hands hurt from catching myself and my knees are a bit sore, but no big scrapes or bruises yet luckily.

Anyway, i don't know how long this tic will stay with me but it's a rough one. Hopefully it will go away soon.