Sunday, June 29, 2014

Some of the Best Things about Camp Twitch and Shout

I now have 1 week and 5 days until I leave for camp twitch and shout! I am so excited that I don't know what to do with myself! My tics have been acting up quite a lot because of the excitement, but camp is so worth it! I have almost everything I need set out next to my suitcase and I wish I could go to camp today!

Anyway what I really wanted to write about today is that I recently found out that my blog and facebook page have inspired at least 3 people to become counselors this year at camp twitch and shout. I am so glad that my posts about camp have helped them to become counselors and that they will get to experience the amazing and life changing place that camp truly is. I know camp has changed my life and I hope that after camp they feel the same way! You can watch all the videos about camp and see all the pictures but you will never truly know how much of an impact this camp will have on you until you experience it for yourself. So since i'm writing this post, I figured I would share some of my favorite things about camp. Again these are not in any particular order, i'm just writing them down as I think of them.

1. The kiddos!!!

The #1 most amazing and important thing about camp is the kiddos. The kids you will meet at camp are so strong and brave. They have been through so much in their lives already and still hold their heads up high, educate others around them about Tourette's, and continue to inspire me every day! These kids deserve to have an amazing week and you as a counselor are there to make sure they do. A lot of the kids have been counting down the days until camp since camp ended last year. They are what matter most during the week! As someone who has grown up with TS, I know how hard the outside world can be to those of us with this condition and I know what it's like to be misunderstood by those who love you and care about you the most. They deserve a week of pure acceptance, community, and friendship. They deserve to be in a place where everyone understands what they go through on a daily basis and to feel like they have a place in the world.

2. Acceptance and Understanding

Like I mentioned above, camp is a place of acceptance and understanding like no other. Even my best friends who I have known since childhood don't understand what it's like to live with Tourette's. They care about me and I can be myself around them, but they will never know what it's truly like. Being in a community of almost 200 people who live with Tourette's every day is the most amazing feeling in the world. Everyone is twitching and making noises. No one even bats an eye when I bark like a dog, shout out the word no, stomp my foot, or hit myself in the chest. No one wonders what i'm doing, makes assumptions about me, or judges me. Everyone knows exactly what it's like to not be in control of your own body.

I have always been slow to warm up to others. It takes me a while to let others see my true self and personality. I know this is at least partly because of my Tourette's and anxiety. However, at camp last year, for the first time in my life I allowed myself to let my guard down. I opened up to others almost immediately, I shared my story, I showed them my personality, and I somehow became part of this amazing family. This was something I had never experienced before in my life. As one of my campers put it, "at camp, you can just be free".

3. What you take away

Both the counselors with TS and without TS alike leave camp with a new perspective on life. Like I have said before, camp is life changing and this is by no means an exaggeration. Even as a counselor, I came away from camp with so much more confidence. After camp, I felt more than ever that I had a community and a place in the world. I knew that even though living with TS can certainly be challenging, I am by no means alone in this challenge and journey. I of course knew before camp that I was no the only person living with TS in the world, but knowing that from a distance is a whole lot different than experiencing it and spending a week with almost 200 other people with TS.

I also came away with a lot more confidence because of how much my campers relied on me and opened up to me during the week. Even though I had 13-15 year old girls, I was still an older counselor who they looked up to and came to when they needed something. Although I don't typically naturally open up to people as I mentioned before, at camp I very quickly became this person who my campers could trust. My campers felt comfortable coming to me about any problem, issue, or emotion they were experiencing. They opened up to me and told me things that they had never told others before. I was there for them as a counselor, an older role model, and a friend. I was someone they could look up to as a person who is living a successful life with TS. This alone gave me more confidence and more self assurance.

Anyway, I cannot wait to experience all these things again in just 1 week and 5 days!!!!! There are so many more amazing things about camp than just these three things that I mentioned above. I can't wait for the new counselors and campers to experience camp and all the amazing things that come along with it! And I can't wait for all the returning counselors and campers to experience it once again :)

Thursday, June 19, 2014

Update on a Tic

Well it's been about a week since the start of my f word tic, and it's calmed down a lot! At first it was really frequent, as is every new tic I have seems to be when it first shows up, but now it's kind of faded into the background. I haven't had the tic for the past two days at all, and I think it will wax and wane like all my other tics. Hopefully it will be one that doesn't show itself very frequently though.

Monday, June 9, 2014

Day 2

Day two of dealing with the f word tic. I was going to be hanging out with one of my high school friends today so I sent her a text giving her a heads up about my new tic. She texted me back saying "I can't speak for everyone, but I can promise you don't have to worry about it around me." 

Later that day when I went to hang out with her, my new tic did happen many times. She told me not to feel bad about it and that if it would make me feel better she would start saying bad words with me. LOL! I have the best friends! For sure :)

She also told me she was sad that I no longer have my "um woof" tic so frequently anymore. She told me she liked that one! I thought this was funny. I love it when my friends can talk with me about my tics like it's just another normal conversation. It makes me feel like there's no elephant in the room and no subject to tip toe around or be overly sensitive about. I really am so lucky to have amazing friends like her :)


I'm really not happy. All of the sudden I have the f word tic. It just came out of no where. I've never had coprolalia before, although I have had copropraxia for about three years (middle finger tic). I'm really upset that I have this new tic and I am brand new to this considering I have never experienced it before. Any advice from those of you who have dealt with coprolalia would be greatly appreciated.

Sunday, June 8, 2014

Overoptimism About My Tics

As one of my camp friends pointed out to me recently, I tend to be overly optimistic about certain situations and how my tics will come into play. Sometimes I just want to ignore my TS when it comes to certain situations and just hope that my TS won't be a problem.

For example, when I was in high school I decided that I didn't need to tell my the teacher for an SAT class about my TS because the class was only a week long. Not the best decision. On the very first day the teacher called me out in front of the entire class and said "Hey you! Girl in the pink shirt making all the movements. Do you have a question???" I really didn't appreciate being called out like that because of my tics, so now I just tell every teacher/professor about my TS before classes no matter what the classroom situation to avoid any future situations like that.

Another example of my overoptimism was my freshman year of college. I started off the year with extra time and small group setting for testing. Even though I took my exams in a private room in high school because of my tics, I thought that maybe college would be different and that my tics wouldn't act up during exams. Also not the best decision. My tics acted up during exams like always, and the other student in the testing room asked me to stop multiple times and when I told her I couldn't, she decided to leave the room and request another testing room for the remainder of the exam. This was not the kindest way to handle the situation on her part, but I got over it. Anyway, after that I decided to request the private testing room for the rest of my exams that year and for all exams in the future.

The other day I had yet another moment of overoptimism. Not quite as dramatic as the first two though. Even though I am highly aware of the fact that I currently have a tic where I smack myself in the chest, I decided to wear a necklace for going out with some friends. The necklace hung right around the area that I usually hit myself, but I thought that maybe tonight the tic wouldn't act up. I really need to stop doing this, lol. Once again the situation did not have a great outcome. I ended up hitting myself repetitively in the chest like always and before I could manage to take the necklace off, I hit the necklace once more very forcefully and it broke. The necklace fell to the floor and the little charms were scattered on the sidewalk. I picked most of them up, but some I couldn't find. I guess i'll be taking a break from wearing necklaces for a little while.