Seeing Someone Else with Tics out and About!

I came back a little while ago from a Sushi dinner with my family which we had together as a celebration of everyone's hard work during the school year. While waiting for our table, my brother and I sat down on a bench facing some tables. I immediately noticed a very pretty young lady in her mid 20's probably who was ticcing!!! She was doing some of the exact same eye tics that I do. Hard squinting and eye rolling. At first I thought maybe she just got something in her eye but as a I sat there for about 15 minutes waiting for a table, I noticed that she did it repetitively and frequently. She was definitely ticcing!

She was out to dinner with a friend and they were talking and looked like they were having a great time! I wanted to go up to her so bad and say "I have tics too!!!" and strike up a conversation with her but I of course held myself back, lol. She looked so sophisticated, looked like she was having a great time, and of course the friend who she was out with seemed totally used to her tics and okay with them. I admired her self-confidence and self-assurance from a far. It always encourages me so much to see this! To see someone who is sophisticated, mature, and out for a special night with a friend having a great time, tics and all. Just wanted to share this moment with you all 

Tourette's Syndrome Awareness Pictures Made by Others!

So you guys have seen lots of tourettes syndrome awareness pictures/posters on this blog that I have made and I figured I should also feature awareness pictures on here that others have made as well. So these awareness pictures were made by others across the web and they are ones that I definitely like and ones that I think do a good job at spreading TS awareness!

Meeting someone new and the City Museum!

This weekend one of my closest friends (who I will call Gally for this blog) had her roommate/close friend from college visit her. Our plan for Friday was to go see The Bling Ring together and our plan today was to go to the City Museum. I was nervous about meeting the roommate because I always tend to be a little nervous when meeting someone new. When meeting a friend of a friend there is always the issue of, "did my friend give this person a heads up that I have Tourette's"?" and "how is this new person going to react to my noises and twitches?". So I tend to worry at least to some extent when meeting someone new who may or may not already know that I have Tourette's.

I met Gally's roommate (who I will call Bunny) for the first time in person last night. Before the movie we met briefly and then walked in and sat down. My first impression of her was that she seemed really nice and she didn't seem like the kind of person who would give me any trouble about my tics. Gally sat between me and Bunny during the movie and of course Gally is very used to my tics so during the movie my tics didn't bother her. I did some vocal tics and a fair amount of motor tics during the movie, but Bunny didn't react at all. I wondered if this was because Gally told her about my tics in advance or because maybe she couldn't see/hear my tics from where she was sitting. Either way, the movie went smoothly. 

After the movie we talked a little bit in the lobby and when I did my vocal tics it didn't seem to phase Gally's roommate at all. She didn't give me any weird looks or react in the slightest to even my louder tics which is pretty impressive because most people, even when given a heads up about my tics, will react to some extent even if its just a startle response. I was doing more pretty decently loud vocal tics in the parking lot when Gally and her roommate walked me to my car and still no reaction from Bunny! She just had a really comforting way of looking at you and making you feel like you don't have to worry or be self conscious. So I didn't feel worried about my tics at all around her even though I had just met her and even though we had never personally had a conversation about my TS. Also part of it was that Gally was there making me feel conformable as well which of course helped! 

The next day (which was today), I hung out with Gally and her roommate again because we had plans to get a group of friends together and go to the city museum. On the way to the city museum in the car I mentioned something about camp. Gally's roommate asked me about camp and asked what camp I was going to be a counselor at. I enthusiastically told her I am going to be a counselor at camp Twitch and shout, a camp for kids with Tourette's. She then said "Cool! I actually got these earrings from an old boy friend who had Tourettte's. He kind of grew out of his tics though". Gally and I kind of started laughing a bit and Gally responded with "Cool story, hahah". Anyway Its always nice to hear that someone has known someone with TS before knowing me! Makes me feel like I am not the only one who has to go though this and also makes the person more used to TS and gives them to background knowledge about it which helps them better understand me when they meet me :) 

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The Perfect Shoes for the Camp Twitch and Shout Dance!

For the camp twitch and shout dance, most of the counselors are going to dress up as Disney princesses since the theme this year is Disney. I am going to dress up as Snow White. So yesterday I went to the mall in search for some of my costume. I'm not going to buy a full Snow White costume online or anything but instead I figured I would put together my own. All I really need is a yellow skirt, a blue shirt, and a red bow. 

First I went into the Disney store, but unfortunately they didn't have much for my snow white costume. They had a snow white themed headband, but it wasn't a bow. It was more of a red feathery headband that didn't look much like something snow white would wear. So I didn't get that. 

Then I went over to the shoe department and found lots of shoes on sale! I figured since they were on sale I would look and see if I could find anything. Sure enough I found the perfect shoes for my snow white costume and they were super cheep because they were on sale! So I bought them and I now have the first piece of my snow white outfit! Tell me these are not the perfect snow white shoes! 

So now I just have to get the rest of the outfit! I'm going to costco today with my mom to buy a new TV so maybe they will have a red bow there or something else I could make a part of my costume :) 

TED Talk: The Game that Can Give you an Extra 10 Years of Life (AKA Post-traumatic growth)

I highly suggest that you watch this TED talk if you have TS and if you have ever gone though or are currently going though a rough time with it. It is titled "The game that can give you an extra 10 years of life" and it's all about helping you get though a rough patch in life by playing a mental game.

Several years ago she suffered a serious concussion, and she created a multiplayer game to get through it, opening it up to anyone to play. In “Superbetter,” players set a goal (health or wellness) and invite others to play with them--and to keep them on track. While most games, and most videogames, have traditionally been about winning, we are now seeing increasing collaboration and games played together to solve problems.

It also talks about something called post-traumatic growth. Here is a quote from the talk: "It seems that somehow a traumatic event can unlock our ability to lead a life with fewer regrets".

Just watch it, trust me!!! You will be able to better cope with any struggle in your life after watching this :)

http://www.ted.com/talks/jane_mcgonigal_the_game_that_can_give_you_10_extra_years_of_life.html

Anticipating Being a Counselor at Camp Twitch and Shout!

Hey guys! So my last blog post about camp twitch and shout was about making the decision to apply to the camp. This blog post is about what happened after that!

After I sent in my application, I had a phone interview. I was nervous during the phone interview and I was worried that it didn't go well but it turns out it really did go well! The nervousness and worrying apparently didn't come out too much in the actual interview. I was glad about that!

After the phone interview, the waiting set in! I've never been a very patient person when it comes to waiting for good news or hearing about something i'm really looking forward to! But I was patient as there was really no alternative. I just had to wait to hear back from them!

After a lot of waiting, I got an e-mail from the new director of the camp, Mandy. The e-mail told me that the camp was offering me  a counselor position for Camp Twitch and Shout this summer. Of course I e-mailed her back as soon as I read the e-mail and accepted!!! I was soooo excited and I don't think I could really put my excitement into words. 

Now means more waiting though! Waiting to find out who my co-counselors are, waiting to find out what age and gender the kids in my cabin are, and waiting to actually go to camp! I hope that at least one other of my co-counselors has TS like me and I hope that I connect with at least a few of the counselors and form long-lasting relationships with both my fellow counselors and the campers! I requested to be a counselor to a cabin of girls who are either in the younger group or the middle age range group. But really I can't wait to meet my campers no matter what age or gender they are! I think this experience will be amazing no matter what age group or gender my campers are!

So for now, i'm waiting to find out about my cabin and co-counselors and i'm counting down the days until camp (July 20th!). I love checking  the camp twitch and shout facebook groups that i'm a part of to see what   people are talking about and to see updates about camp! I also am gathering cool things to bring! I scoured my basement the other night and found a lot of neat things that could totally be costumes for camp theme days! I also bought these super cool lightweight balls that are fun to bounce around and play with which I will also bring to camp!

My Brother and the Sleep Doctor

My younger brother has been having trouble sleeping at night for a long time and he finally had an appointment at a sleep clinic. The doctor thinks he might have restless leg syndrome because of all the leg bouncing he always does and was doing in the office. He thinks that nothing is wrong with him of course because he wants to be a 100% normal teenager. He has to go do a sleep study and spend the night in the hospital next Thursday.

I'm worried here about two main things. First I am worried that he might have Tourette's like I do. I have seen him do lots of different things that seem like tics throughout the years but on the other hand maybe I am just looking for something that isn't there because I have TS and am always tuned in to what other people are doing with their bodies because of that. I hope that he does not have TS because I wouldn't wish TS on anyone, especially my brother. The good thing is that if he does have it though, he has a fairly mild case.

I'm also worried that he might have TS but that the doctors at the sleep clinic will not know much about TS and will diagnose him with restless leg syndrome when he actually does not have it. Then he will end up on medication for restless leg syndrome that won't help him sleep and will still be undiagnosed, whatever he may have that has been making sleep difficult for him.

The good thing is that he will know on Thursday what the doctors think after observing him sleep during the study. Doctors however are not always right as I have so closely experienced and observed.

Wish him luck with the appointment. Hopefully he is right and the trouble sleeping is just a normal teenager thing.

One thing he said to me though when I asked him about if he felt like his legs were restless was that sometimes when he is sleeping he feels really restless all over his body and feels like just exploding. I asked him if he feels this any other time besides when he is in bed trying to sleep and he said no. Not sure what this means. Anyone want to weigh in here and tell me what you think he might have or if this might just be normal for a teenage boy?

Also, he has been dependent on large doses of melatonin to sleep at all for at lest a year or more now.

Applying to Camp Twitch and Shout Post (From What Happened in March)

Hey guys! So I realized today that I never really wrote a full blog post about camp twitch and shout! I guess I have been pretty busy and now that I am out of school and on summer break I have more time on my hands. I haven't been feeling like writing a lot of blog posts lately, not sure why, but just a second ago I got a sudden urge to write a blog post about camp twitch and shout so that's what i'm going to do now!

Anyway, I have been wanting to get involved with camp twitch and shout for about more than two years now! The first summer that I found out about the camp,the year my cousin went as a CIT, I wouldn't have been able to go because I went to a creative writing program at Iowa University's Young Writers Studio. I was still soooo jealous of my cousin that she was able to go to camp twitch and shout that year! She came back from camp and at a family party she was wearing a big and wide "Tourette's Tics Me Off" wristband from camp and I remember being so jealous! Jealous in a good way of course. I wanted so badly to have gone to camp twitch and shout and to have been confident enough to wear a TS wristband at a family party. But at that time I was still too shy about my TS.

The next year I still wanted to go to camp twitch and shout to be a CIT or a counselor but I ended up working pretty much full time in a Tourette Syndrome neuro-imaging research lab at the med school. I thought it was pretty darn cool that I got to work at this lab!!! But still knew I was missing out on camp!

This year during the school year I became determined to be a counselor at camp twitch and shout. It all started with a dream. I don't know if I posted on this blog about that dream but the dream was pretty much this:

"In my dream I was a counselor at camp twitch and shout and I was soooo excited to be there. I was loving interacting with the kids who had TS just like me. When it was time for me to go over and interact with the other counselors my age that had TS though I started to feel really uncomfortable and nervous. I went to sit down next to a counselor on some bleachers and we were listening to some kind of assembly speech. I was ticcing a lot during the speach and half way through the counselor sitting next to me who I wanted to try to connect with turned to me and said in a really sassy way: "I didn't know you had the courage to bust." Then I said "Bust? Is that some kind of slang word for let your tics out?". Then she just laughed at me." 

The dream bothered me so much! I just couldn't stop thinking about it. I think what I was really dreaming about was being on the outside, being an outcast even in a community of people with TS just like me. I was dreaming about the fact that I had wanted to go to camp twitch and shout for the past two years and was not able and that in that time the people in the camp twitch and shout community had bonded without me, had terminolgy and inside jokes about TS that I could not understand, and therefore I felt in this dream like I was not a part of the TS community and I was very much on the outside. By saying " I didn't know you had the courage to bust" in such a sassy way she was essentially saying "You aren't one of us. You may have TS but you aren't a part of this community because you aren't as confident about your TS as we are". This upset me so much because I knew none of this was true! I am very confident about my TS now and I am not ashamed of who I am, tics and OCD and all! Some part of me though must have been feeling insecure deep down. Some part of me was trying to convince me that I needed to think more about all of this. 

So I did, I started thinking about it. Thinking about how I am not ashamed of my TS, how I am part of the TS community, and how regardless of the dream I don't think I would be rejected by the TS counselors if I did actually go to camp twitch and shout. So I posted about my dream on facebook to get some feedback from some other people with TS. 

I sure am glad I posted it on facebook because the results were wonderful!! I got lots of comments on the post but the one that stuck out to me the most was from an actual counselor at camp twitch and shout who has been a counselor there for the two years that I had missed out on. She told me this "I can assure you though from personal experience because I've been a Counselor at camp twitch and shout for 2 years and am sending in an application for a 3rd year, you would NEVER be treated like that !!! I was super nervous my first year as a counselor there...  But let me tell you, CTAS was the best thing that happened to me. I had a great cabin of kids, all of whom I love dearly , and even though I was hoping I could provide advice to them and stuff, seriously I learned as much from them as they learned from me!!! And the other Counselors... You have nothing to worry about. About half of them have TS themselves. They completely understand you and do not judge whatever severity of TS you have. The Counselors with TS have varying degrees of TS, so no one would shame you for holding them in... They'd probably relate.. Some of the core values at CTAS are acceptance, respect... Being open minded... Compassion... Etc. My co-Counselors from both years are actually my best friends now even though we only spent the week of camp together." 

Anyway you get the point. We ended up talking a lot more over facebook about camp. I wanted soooo badly, like I had in the past to get involved with camp twitch and shout! Since I was old enough, I wanted so badly to be a counselor there. The more I talked with this counselor, the more I wanted to go and knew it would be an amazing experience for me. 

So what I did was I made a list. It was a list of the things I would have to do in order to be a counselor at camp twitch and shout. For me though it was a very long list, and the first big thing on the list was was greatest hurdle I needed to get over: talking to my mom about it. My mom would of course need to know because it's not like I could just say "Bye mom, this week i'm just going to be out of town for the heck of it". Lol, no. She would need to know where I was going and I would need her help with travel arrangements and payments. 

Talking to my mom about it was a big deal for me because my mom has always had trouble with the whole TS thing. As I have talked about in previous posts, my TS is a difficult thing for her to deal with because she feels like she could have done so much more for me as a child if she knew I had TS and all the associated conditions that come along with it. It is of course also hard for her to come to terms with the fact that she really didn't know something major was going on with her own child and instead thought the ways that my tics and associated conditions manifested as a child was just a cry for attention and an attempt to manipulate her. So of course she feels guilty for thinking I was being manipulative when in reality I had a neurological disorder that I could't control and feels guilty for disciplining me as a child for these things that I couldn't control. She was angry at me instead of understanding and knowing this now is painful for her. 

I did it though. I bit the bullet and got up the courage to talk to my mom about camp twitch and shout. The conversation went kind of like I expected it to go, knowing my mom. But at the end of the conversation we came to an agreement that I am 19 years old and at this point it was up to me to make decisions about what I want to do in my own life. 

So after I crossed off that on my list, the next things on my list didn't seem nearly as hard. Next I filled out the application, sent it in though the mail, had a phone interview and waited to hear back from camp twitch and shout!!!