Monday, October 31, 2011

Tourette's Encounter of Halloween Night :)

Tonight a girl who was about 12 years old came to my door for Halloween. My brother, Debate King Bro, had been answering the door all night and my mom told me it was my turn. I stood up to get the door saying "Happy Halloween" and holding the bowl of candy. She told me that she was collecting canned goods for the local area food bank and asked if I had any. The girl was squeezing her eyes together and blinking very hard which I immediately recognized as some form of tic disorder, most likely Tourette's. Having Tourette's myself makes me an expert at spotting tics. Although her's were not hard to spot. I smiled at her and said "hold on" and then shouted into the house "Hey do we have any canned food?". Debate King Bro always is very upset by people who are homeless or hungry. He really has a soft spot for that, so he grabbed some canned soup from the cabinet and put it in the girl's hand. I gave her some candy too and she said thanks and went on her way. People like this make me smile. She isn't afraid to go to people's doors blinking and squinting like crazy and ask for canned goods. Just another kid with tics who isn't afraid to be who they are. Thank you 12 year old treat-or-treater for showing the people in my neighborhood a kid with TS who is confident and who cares about others :)

Second Day of the Regatta

The second day of the Regatta was the day of the actual races. We got up at 6:45, ate a quick breakfast, then headed down to the race site on the bus. When we got there, the tent and tarps and tables were already set up thank goodness! I sat down in my crazy creek chair and immediately noticed that I forgot my warm ski socks back at the hotel! Luckily my mom had come along to watch me and my brother at the Regatta so I started calling her and texting her immediately! She got the text just in time before my first race, but in the mean time I wrapped my extra sweat pants around my feet which worked surprisingly well! It was absolutely freezing and I was bundled up with long sleeves, long spandex pants, a sweat shirt, a heavy down coat, sweat pants, a hat, and gloves. My mom got to the site with my socks and toe warmers about 20 minutes before my race and my feet warmed up really fast! I then got the boat out on the water, coxed two 5k's, one of which was the race and got back with enough time to eat some lunch and use the restroom before my next race. The next race was in a four person boat. My first 8 person boat that I had just finished coxing had given me bruises on my back from sitting in the cox seat for so long! Then when I got in the 4 person boat I decided it was warm enough to leave my coat and gloves behind. WRONG DECISION! Yes, it was fairly warm at this point but I did not account for the fact that I would be splashed by the person in two seat with her oar for the entire race! At the end of the race I was freezing cold and soaking wet! I also had a bruise on my back from the eight person boat, a bruise on my head from the head rest in the 4 person boat, a bruised and swollen knee from steering the 4 person boat, and a bruise on my jaw from earlier when I had smacked myself in the face identically due to an arm tic. Overall I was freezing cold and in pain and not very happy because my first boat and come in last and my second boat had come in 6th. But the good thing was that I had been so focused on coxing the entire time that I didn't actually tic that much during the day. My OCD however, did interfear with the trip in SO many ways. I don't really want to go into that right now though. If anyone out there however does want to hear more about how my OCD effects me, comment on one of my posts and I'll try to make some posts about OCD. Usually though it's something that I don't talk about much because I find it to be very embarrassing. All in all I was glad when the Regatta was over, but I was also proud of myself that I had actually done it and that I got through the Regatta alright! I am now home and even though it may have been my last Regatta, I am still glad that I could go and get something out of it.

My boat:

 Another team's boat:

Sunday, October 30, 2011

First Day of the Regatta- The Bus Ride and A Stranger's Reaction to Tourette's

I am finally back from the Regatta! And I have to say I am so glad it's over. The first thing that I was pretty stressed about was the bus ride, although it ended up being just fine! I was really lucky because I came on the bus pretty late and all the seats except for the front ones were taken. Everyone was already paired up with someone to sit with, so I got two seats to myself! Being in the front helped me feel less enclosed or trapped and having two seats helped with that as well. Feeling trapped is one of the major things that sets me tics off and when I was younger I had panic attacks in movie theaters, plays, and small rooms. I slept the first couple of hours and when I woke up I stayed really focused on my homework. Because I was sitting alone, either sleeping or doing homework the entire time, my tics were very mild. I had some minor motor tics on the ride but no loud vocal tics which was really a relief!

The only time of the whole Regatta when my tics got pretty bad was that night. We first went to the race site and took the boats down and put the riggers back on. During this period I was standing with Freshman buddy, and two other girls who also know about my tics, so I didn't get any comments or looks from them when I started stomping my feet really hard on the ground at throwing my arms out in front of me. When we got back on the bus I was ticcing like crazy with anticipation, but just motor tics thank goodness! I hit myself pretty hard in the jaw though accidentally due to some arm tics and got a bit of a bruise that's still sore! Little did I know that this would be my first of MANY bruises I would receive during the Regatta. However, the other bruises were not due to tics. Anyway, Some of the girls were looking over at me a bit, but they've seen my motor tics before and I'm used to people looking. We went to dinner at Red Robin and I was still ticcing pretty badly at this point. I sat with girls that all knew about my tics and with the coach who knows as well so I wasn't very self conscious and the girls and coach were very good about treated me normally like they always do. They didn't seem to be phased by my tics at all. Our waitress however, was not accustomed to someone with TS. At the end of dinner when I was done with my food I was talking with the other girls and the waitress came over. I was still ticcing, but not that badly compared to earlier, and the waitress asked my friend sitting next to me if I was done with my food. My friend said "I don't know, I think so" and the waitress took my food away. I kinda wanted to shout at the lady and say "I can talk for myself you know!" but she left too quickly. This really makes me angry because she made an assumption about me based on the fact that I was ticcing which probably was along the lines of that I was unable to talk for myself or that I was disabled in some way and needed others to talk for me. Now these assumptions are not true, but she acted on her assumptions anyway. Little did she know that I would be steering a boat down the Ohio river and screaming my lungs out at the rowers telling them to row harder and to put everything they had into the race. I would be correcting their technique and calling for pressure in order to get the boat situated in the right direction. I could have let her assumption upset me, but I chose not to. Her assumption was just that, an assumption and she only made this assumption because she was uneducated about Tourettes. If she somehow got to know me on a personal level she would have realized that her initial assumption was completely wrong and she would come to grow accustomed to my tics just like everyone else has. This thought, I guess, is what helped me to ignore the situation and not take in personally. Somehow also the fact that I knew I was going to write about it on my blog helped me as well. Writing about these kinds of things helps me take a step back from the situation and accept the I do look different when I tic but it in no way reflects on who I am as a person.

After dinner we all went straight back to the hotel to get some rest before the Regatta. I explained Tourettes to the rower that I was sharing a bed with and she seemed to be fine with it even though she was one of the rare ones who had never heard of Tourettes before. I told her that it caused involuntary sounds and  movements similar to twitching and she seemed to understand and told me she was sorry for earlier when she said "bless you" after I did my first vocal tic of the day (Incredible!) which was the one that sounds like a high pitched "eeeek" or a sneeze sometimes. I told her not to worry about it and that people confuse it for a sneeze all the time.

Overall I had a very good fist day of the Regatta! I appreciated that my vocal ticcing was minimal and even though my motor tics started acting up near the end of the night I didn't let it ruin my time :)

More to come in part two!

Thursday, October 27, 2011

Prepping for the Regatta!

A shorter post for tonight! I have to get ready for my Regatta!!! I probably won't post Friday or Saturday night because I'll be at the Regatta, but maybe if I have internet access I'll feel the need to post a short update. Tonight I spent all night de-rigging boats and packing up many many cox boxes into their cox box boxes and many many cox box boxes into the very large cox box box box. That's certainly a mouthful, cox box box box. We put all the boats and oars onto the trailer that the travel on to get to the Regatta site. Our Regatta is all the way in a diffrent state and over all its a 7-8 hour buss ride to get there. The fun thing about tonight was that every varsity member was paired up with a novice member (as a sort of buddy system) and since I'm a novice I was paired up with a varsity Coxswain, Freckles. I've talked with Freckles a bit before and of course I see her around the boat house but she really doesn't talk much. She's very quiet until she gets out onto the boat or is shouting commands at the rowers so I haven't gotten to know her very well. Tonight though she showed me how to pack up the cox boxes and how to de-rigger boats. She even made sure that I had my own cox box box for the Regatta with my name on it and everything! I was excited about having my own cox box and cox box box! She's about my age and we talked about college and school and I would consider us pretty close now. I ticced quite a bit around her and even did some vocal tics but she didn't comment at all. I assume this means that she already knows I have TS or she knows what its like to feel different and wouldn't want to make me feel this way. I will of course mention it too her if we end up sitting on the bus together tomorrow. I think I'll either sit with Freshman Buddy or Freckles on the bus, and because I feel more conformable around Freckles now than I used to I'm actually less nervous about the bus ride. I'm feeling a bit better about the bus ride but I'm still pretty nervous about how my tics will be on the bus. I have always hated anticipation and waiting. I will be up early (at 6:00) to go down to the boat house and we'll pick up Freshman Buddy on the way. My mom is driving both my brother and I to the Regatta in the morning. My brother who I will call Debate King Bro started as a rower this year on the boys novice team (he's 15 and a freshman). Also a side note I got accepted into my first college today! It was one of my safe schools but i'm really excited to say that I have been officially admitted into college! :)

Wednesday, October 26, 2011

Just another day in the life of someone with Tourette's

I think I have broken a record today! Today I told 3 people who I'm not really close to about my Tourette's. I'm really getting good at this telling other people in the spur of the moment thing. This will be very good practice for college! The first time today was in physics class and we were doing a lab. I was paired with Ohio Gal, who is one of my friends who already knows I have TS, and two other kids from my class who I don't really know all too well. While we were doing the lab I did a vocal tic (the one that most people think is a high pitched sneeze of sorts) and the girl sitting next to me said "What was that? Was that a sneeze?" I quickly responded that "No it was not a sneeze" and that "It's a vocal tic. Tourettes" and they both said "okay" and went back to work! A quick encounter, but none the less a very important one because next time I tic during a lab they will know what's going on. So that's two. Then after lunch I was hanging out with Pessimistic Friend and a girl from my math class. It was unavoidable that I was going to do a vocal tic at some point because they always get bad in the afternoon. So when I did a vocal tic I was prepared for the "Bless you...Wait was that a sneeze?" and responded with my typical "Actually its a vocal tic. Tourettes". This time since the girl knows me and is in a class with me she gave a bit of an "Ohhh. I see, so that's why you keep doing it in math class and we can never figure out if you're sneezing or not!" then she said that she wouldn't say bless you next time because she knows now. When she left, Pessimistic Friend, who of course knows I have TS, tried to imitate my "eeekkk" vocal tic that people can confuse for a sneeze and said she would probably rate that one at a 4 usually but sometimes a louder 6 on a scale of 1 to 10.

After school I went to rowing and it was FREEZING COLD and RAINING! But we STILL WENT OUT! CRAZYNESS! I was freezing and as a coxswain I was sitting in about an inch of water since I was coxing a 4 person boat and sitting at the bottom of it. By the end I was completely soaked and freezing and my tics were WAY acting up. The cold always seems to make my tics so much worse. Luckily I fit right in with all the other wriggling girls who were trying to warm themselves up by jumping and shaking their arms. Once I got in the car though with Freshman Buddy my head thrashing tics really started to act up. I basically tighten my neck and throw my head forward as hard and fast as possible. It's not a whole lot of fun and my neck is now killing me. In addition the other two tics that I hate were acting up as well, my chest thumping and stomach punching tics. Those ones really hurt and its kinda hard knowing that i'm the one whose hitting myself in the chest and stomach and yet I can't stop. I was chest thumping and stomach punching and head thrashing all the way home in the car. I HATE THE COLD! Luckily Freshman Buddy was there, and noticing how badly I was ticcing, tried to distract me by talking with me about rowing and the Regatta coming up. Now that i'm home and have changed clothes into something less wet my tics have calmed down quite a bit but I'm still super nervous about the bus ride to the Regatta. Only one day left before I have to leave. I probably won't post on Friday or Saturday because I'll be at the Regatta but I will surely make a post when I get back on Sunday to tell you all how it went. Hopefully things will go alright :)

Tuesday, October 25, 2011

Tourette's Syndrome Association (TSA) Meeting and Little Frog Boy

I just came back from my 2nd ever TSA meeting. Tonight the meeting was at a local hospital and there was a neurologist speaking about Tourette's, OCD, and ADD/ADHD. The speech sounded like it was going to be really interesting but I was outside of the room in a little alcove helping with the lego club! Only two little kids actually showed up since it was on a school night, but we still had fun! Train Man, a high schooler that I met at the September meeting, was there too and both of us helped out with the younger kids. We played a board game called friendship that was meant to teach social skills and the kids played with Lego's too. One of the little boys who was playing with us was doing these little frog jumps and donkey kicks as we played and it was kinda adorable. I am guessing they were probably tics, but they were the cutest tics I've ever seen! I kinda wanted to take him home with me :). All in all it was a good meeting. I think the boys had fun, but I am still waiting for another girl to show up at one of these meetings! I guess TS is much more common in boys, but I will be very excited the day I see another girl at a TSA meeting. I also talked with the chair of our  TSA chapter tonight about organizing an informal teen meeting for teens with TS to get together and talk and she really thought it was a great idea. I'm excited about that and will certainly post on my blog if and when we have the teen pizza dinner meeting.

Monday, October 24, 2011

In the Past- My Own Misconceptions about Tourette's Syndrome

Today I was thinking about 9th grade drama class with Hip Drama Teacher. I didn't like drama class very much because I was very shy and I hated having to talk at all in the class. However, I did a lot of listening and I really enjoyed the stories and fantastically interesting conversations that Hip Drama Teacher would initiate. My favorite memory of the class was when she told us all the story of when she fell off her bike and had a dream of sorts when she was unconscious of herself as a little Indian boy which she was convinced was her in another life. As a result she actually became Buddhist as an adult. She really is a fascinating person, which is why I'm kind of sad I dropped drama after that year. She also has a son with Tourette's who she talked about quite a bit.. Another one of the conversations that stood out to me from that year was one that she had with a boy in the class who also had Tourettes. She started talking to him about a Tourette's documentary that she was excited to see and about how her son ticced so hard in his sleep that he kicked her off the bed and broke her arm (she had a large cast on at this point!).

As a ninth grader who was not yet diagnosed with TS at this point, I had my own misconceptions about what Tourette's Syndrome actually was. No one had ever talked about TS with me and this conversation was the first time I had ever actually heard people really talking about it.  It's pretty ironic that as a 9th grader with undiagnosed TS, I though Tourette's Syndrome was actually the equivalent of early onset Parkinson's Disease for children. At the time, I really thought that TS was a degenerative disease and that people with Tourette's were in constant motion as a child and young adult until it entered its final stages in adulthood at which point the person would not be able to move at all and would be essentially paralyzed. Now this was obviously completely incorrect, and looking back I can't really believe that this was actually my perception of Tourettes as a younger teen.

What I find really upsetting as I look back on this is that when I heard Hip Drama Teacher and the kid in my class talking about Tourette's, I decided to look it up online to figure out if my idea of TS was really the truth and went immediately to Wikipedia.  The Wikipedia page for Tourette's was immensely confusing, using all sorts of medical jargon, and after about three minutes of being utterly confused and frustrated by the explanation I gave up and decided that I really didn't care all that much. I really didn't care all that much....and this was the truth. As a 9th grader, I thought that this medical condition was obscure and would never be any problem of mine. The really ironic thing is that if I had spent a few more minutes on the page or decided to go to a different website like the TSA website maybe, I might have figured out "Hey, this sounds a lot like me".

This memory gives me two things: frustration and understanding. It makes me frustrated that I didn't care enough to check a different source for an explanation (which would have only taken about 5 extra minutes). But it also gives me understanding because it shows me how easy it is for others to have misconceptions about Tourettes and to really not care enough to clear up these misconceptions and understand the disorder for what is really is. I was one of these people, and this does really make me upset looking back. Now however, I have the opportunity to make up for the fact that back as a 9th grader I didn't take the extra time to clear up my own misconception. Every time I tic, tell other people about what Tourette's really is, and explain my condition I am spreading awareness. This blog is spreading awareness as well and it is my hope that I can have an impact on those people who are like I used to be and who don't take the time to truly understand.

Sunday, October 23, 2011

My tics let me sleep in :)

This morning I was able to stay in bed until 10:00 which is a huge accomplishment for me. Usually my tics wake me up on weekends VERY early. Most days my tics have no intention of letting me go back to bed past 8:00ish,  but this morning they left me alone :) I feel very well rested today! I've also been having less trouble with tics at night when trying to fall asleep lately which I have really appreciated! Over the summer when I went to my writing program it took me hours to fall asleep due to tics. My roommate would joke with me saying "You should probably start at this trying to sleep thing early tonight" if she noticed my tics had been bad during the day. On numerous occasions I would wake hitting my arms against the railings of the loft bed which caused large bruises quite a few times. Hopefully my bed will be ON THE GROUND and not have railings in college. That would be much appreciated.
After I got up (at 10:00!) and walked down stairs my mom started telling me about a party she went to last night. She told me she ran into a kid from my class who was serving food at the party to earn some money and his dad. She told me that his dad is a heart surgeon and has Tourettes. Although she had not confirmed this with him for sure she said "it was quite obvious" and added "But! He's a heart surgeon!". My mom cracks me up sometimes because she seems to run into so many adults who seem to have tics. I think she's just more aware of it because she has me as a daughter. Also, I'm getting excited for my TSA meeting on Tuesday night! I'll be helping out with the lego club while the parents are listening to a neurologist speak about TS.Last time I went to one I played with the kids with TS who are in the lego club and after about an hour of playing a little boy 5 year old boy turned to me and said "This was the best day ever! I'm going to tell all my friends!" :)

Saturday, October 22, 2011

Tics in a dark ally

Steam Punk and I hung out tonight. She usually isn't fazed at all by my tics and is one of the people who never draws any attention to them and rarley even comments on them. She's so used to me ticcing that she says she just doesn't notice it that much anymore. Tonight I helped her with a photography assignment by showing her around the city area near my house. We went into a darkish ally behind a shop to take pictures of some crates. While she was taking the picture I made a very loud and sudden noise that even I wasn't expecting. Steam Punk jumped a bit and said "That actually scared me!" and chuckled a little. I responded with a slight laugh and a "sorry" and she smiled at me and said "Don't be". Little moments like these make me smile and remind me that my friends understand :)

Friday, October 21, 2011

10 questions I have found or that people ask me about Tourettes

1.What do you find is one of the biggest challenges of living with Tourettes?

I find that one of the hardest things is accepting myself and accepting that even though I live with Tourette's my tics do not define me as a person and do not reflect on who I am at all. I find this difficult because a lot of the time I have trouble separating myself from my tics and thinking of them as a separate entity from myself. I don’t do my tics on purpose and although sometimes I can hold them back for short periods of time a lot of the time I really have no control over them. I find it a challenge to think of TS as a little brother who tags along beside me and is annoying and frustrating but should not be confused with who I am. A lot of the time I feel guilty or ashamed about ticcing when I know I shouldn’t because I can't help it.

2. What’s been your best response to a negative comment?

I really don't get any highly negative comments. I do get a lot of comments in general though. MANY throughout the day. "What was that?" "Was that a sneeze?" "Is there a bird in here" "Why are you looking over there so much?" "Was that you or your computer?". I always casually explain that I have Tourette's and I'm sorry but don’t do these things on purpose and the person just usually responds with "Don't worry about it, your fine" or "Oh, really?". I had plenty of negative comments about my tics as a child but I can't remember what I said back to these people. Knowing myself as a kid, I probably didn’t say anything at all.

3. What advice would you give to a young person with Tourettes who’s approaching adolescence?

I'd tell them that their tics are probably going to get worse as an adolescent but not to let the tics stop them from being a regular teenager. Don't be ashamed to let people know that you have Tourette's. It makes things a lot easier if you tell others.

4. If you could turn off your motor tics or your vocal tics, but not both, which would you choose?

This is a VERY tricky question. My vocal tics are loud and draw attention to me even when I would much rather not have attention in this way at all, but my motor tics hurt a lot of the time. Overall I would probably chose to get rid of my vocal tics because they really seem to catch people's attention and elicit the all too familiar "What was that?" responce.

5. Do you think your tics are influenced by or affect your personality?

My tics are not influenced by my personality at all. They are all very random and usually things I would never chose to do if I had the choice. If in any way I think sometimes they affect my personality positively. Since I was diagnosed my friends have pointed out that I am actually more confident.

6. What one thing do you think would make living with Tourettes easier?

I think it would have been easier if I was diagnosed at a younger age.  This would have made it much easier for my parents to accept it I think and would have made me even more used to telling others about it than I am now.

7. Do you have Tourettes in your dreams?

I do have Tourettes in some of my dreams but in other dreams I am tic free. I acctually have a fair share of Tourette/OCD dreams that are mainly centered around one of the two.

8. How would you describe how your tics feel?

This would depend on the type of tic for me. Vocal tics feel like a pressure building in my throat and right before I tic I feel the pressure surging up like energy. Sometimes I can feel this pressure surging throughout my entire upper torso before I tic. Motor tics feel like a kind of pressure building as well but its more confined to the area that the tic is located. Most of the time I feel like I am either a coke can that someone has shaken much to hard of like I'm a 40 Watt lightblub plugged into a 1000 Watt plug.

9. What do you think the biggest misconception about Tourettes is?

I would say that the biggest misconception is that all people with TS swear. All people with TS do not have swearing tics! Only about 5-10% of people with TS have swearing tics and I am not one of them. I have met A LOT of people with Tourette's and I've only met one or two who actually swear as a tic.

10. Tourette's is a genetic disorder. Are you the only one in your family that has it? 

No, I am not the only person in my family who has TS. In fact a lot of people in my family have Tourettes or OCD or both. My dad has vocal tics (most likely undiagnosed Tourettes), OCD, and ADD. My brother has tics that have not yet been diagnosed as Tourettes because he doesn’t really want to talk about it. And my first cousin on my dad's side has been diagnosed with both Tourettes and OCD.  There is clearly a TS/OCD gene in my family. 

Thursday, October 20, 2011

A New Power

So I know i've already posted for today but I had some thoughts tonight when I met with my math tutor, Mr. Sits on Towel, and I just had to write a post about it before I forgot what my thoughts were. I've been seeing Mr. Sits on Towel for math tutoring for quite a while now but usually I'm so focused on the math that I don't tic all that much. Tonight though I saw him later than usual, 8:00, and I drove myself to the book store where we were meeting. This made me extra stressed so my eye rolling tic was really acting up. My eyes would just not listen tonight as my tics have been quite bad today so my eyes continued to roll as he explained some math to me. He stopped me in the middle of the lesson and asked "Are you looking at something over there?" At first I was confused but when I realized he was talking about my eye tic I calmly said "Oh sorry, it's a tic. I really don't mean to do it". I probably would have gone into the TS explanation but Country Club Mom was sitting at a table near by and I had recognized her as one of my mom's friends earlier in the session. Also I think he got the idea because most people assume I mean some form of Tourettes when I bring up tics. Mr. Sits on Towel looked unsettled and went back to teaching the lesson. Later in the session he brought it back up though insisting that he had to explain himself because he felt really embarrassed about bringing it up and asking me about the eye rolling. He said he was worried that because I ticced right before he made a comment he thought I might have been rolling my eyes at him and he was confused because I had never been sarcastic or rude to him before. He said he was really sorry for mentioning it at all but I quickly reassured him that it was no big deal at all and that people ask me about my tics all the time and I don't mind explaining. I also said I was sorry for rolling my eyes and again that I really wasn't doing it on purpose. From there he told me not to apologize and that he was the one who needed to apologize for bringing it up. Is it wrong to feel a sense of satisfaction here? I think no. I have never had the ability to make others feel embarrassed or like they said the wrong thing to me in general much less when commenting on my tics. All my life I have been the one who was embarrassed when people comment or make fun of my tics as a younger child and now when people comment I politely explain that I can't help it or don't do it on purpose and that I have Tourettes. They are the ones who feel bad. Not me anymore. It's like a new power. I am the one who has the upper hand, and tonight it felt really good to be the one to reassure my tutor that he had not said the wrong thing when he was feeling rather embarrassed. I assured him that his embarrassment was unnecessary but somehow I was satisfied with the fact that he felt as if he should be embarrassed. I am not the one who is doing wrong by ticcing; other people are doing wrong by judging and they know it. :)

Copropraxia is not my friend

When people think of Tourette's Syndrome a lot of them think of someone swearing uncontrollably, however very few people with Tourette's actually suffer from uncontrollable swearing which is called Coprolallia. I am always able to say "I do have Tourette's, but I don't have Coprolallia" but unfortunatly I have never been able to say "I don't have Copropraxia". For those of you who don't know, Copropraxia is a tic that involves inappropriate gestures or inappropriate touching and it's something that i've dealt with since I was a kid. One of my first tics as a child was grabbing at my crotch area and it was a tic that I truly hated. Even though I sniffled, made slurping sounds with my mouth, and twitched my eyebrows, none of these caused me as many problems as the Copropraxia did. The other kids made up stories that I had grown up in a trailer park and no one ever told me not to grab at my crotch. I absolutely hated that I did this, but I couldn't stop myself no matter how hard I tried. I no longer have this tic, but Copropraxia just doesn't seem to want to go away. Right now my two tics that would classify as Copropraxia are making my fingers point like guns and putting up my middle finger. So far i've been able to keep these two tics under raps for the most part by sitting on my hands, clenching my hands, and holding my hands under the table but today my hands just didn't want to cooperate. I'm pretty sure some freshman thought I was giving him the middle finger in the hallway and I was putting both of my middle fingers out the whole ride home with Freshman Buddy, my car pool from rowing. The middle finger tic now seems to be combined with a body and arm jerk as well but Freshman Buddy seemed unfazed as I jerked and stuck out my middle fingers rapidly. Of course I would never choose to stick my middle fingers out if I had a choice in the matter which is why I really hate Copropraxia. I may offend people and I really have no control. Freshman Buddy knows that I have Tourette's so she wasn't offended in the slightest which is really great. At rowing today I shared with her the story of how I don't do well on long bus rides thanks to full body tics and on planes people have confused my tics for an epileptic seizure. She laughed along with me as I told her this and we were both in good spirits about the whole thing even with my middle finger tic. Hopefully Freshman Buddy will sit with my on the ride to the Regatta. She doesn't seem to mind my tics and sitting with her would give me a certain amount of comfort as well as allowing me to avoid giving the Tourette's explanation to yet another member of my rowing team. Rowers are very curious, and although I really don't mind explaining, sitting next to someone who is not yet fully comfortable around me when I tic might not be the best thing for me or the other person on the 7 hour bus ride when my tics will probably be rather forceful and loud.

Note from November 2011: I now have completely gotten rid of of the middle finger tic thanks to a bloggers comment on this blog. It took lots of time and practice but instead of doing the middle finger tic, I now just grab at my middle finger from time to time so that its not longer the inappropriate gesture.  Thank goodness that's gone! It was really no fun at all. Still do the guns with my fingers every now and then but they are not as frequent.

Wednesday, October 19, 2011

"They'll know soon"

Today is Wednesday, my first post in my hopefully long line of daily posts, and the day of my weekly appointment with Ginger Therapist. I recently switched therapists because I just couldn't stand my last one. Ginger Therapist sometimes really cracks me up with some of the things she says. It's like you just never know what's going to come out of her mouth next. Today I mentioned that I was nervous about this year's upcoming Regatta (race) which is in two weeks. I'm a coxswain for a rowing club and the Regattas are a BIG deal. There are a lot of things that make me nervous about the Regatta especially with my OCD but one of the things that's making me the most nervous is the seven hour bus ride to Ohio. As you can imagine 7 hours in a packed bus is not the ideal place for someone with Tourette's. I told Ginger Therapist that I was nervous about the bus ride  because "well you know....I make noises" and her response was "Well don't they already know about that?" and when I told her that not all of the girls on the team did know she laughed a bit and said "Well, They'll know soon". At first I thought that this might be an odd thing for a therapist to say to a patient but then I looked back at my after lunch break earlier today when I was hanging out with Pessimistic Friend and chirping, squeaking loudly, and making my forceful "heh" noise. At this point I thought to myself "Yes, this is true. They'll know soon."

One more note before I end today's post: I think I'm having more fun making up funny nick names for everyone than actually writing these, lol. I will try to avoid using lol and haha in my posts. I consider them to be rather useless and annoying so maybe this blog will help me break that habit of using them :)

Tuesday, October 18, 2011

A new goal! A post every day!

Hello bloggers and internet roamers. If you have read my other posts on this blog you know my story. So I can't say there's really too much more of my past to tell. I take things day by day now so it's my new goal to bring you all in to my every day life of living with TS and OCD. From now on I will try to post something every day (even if it might just be a few sentences). Most of it will probably be about either TS, OCD, or Anxiety. I may not be able to really post every day (but who knows, I may surprise myself). This is a welcome post. Welcome to my life with all its ups, downs, and sideways moments :P

Opening up about Tourette's

Hi bloggers! Sorry that I haven’t been able to upload the second half of my story really, but I have been so busy with college applications. I’m applying early action to Princeton which is quite a task with all the supplemental essays and short answers that are required! I have plenty of other apps as well that still need to be finished and almost every one of them has their own supplement, gosh! Anyway here is the rest of my story, I got distracted from my work and decided to write it up.

I continued to hide from my diagnosis for the rest of the school year and in summer after I was diagnosed with Tourette's Syndrome and I was just so fed up with hiding. I was going to be attending the a writer’s studio for creative writing at a prominent university and I thought it might be a good time to see what it would really be like to open up about my TS for the first time.

 My mom and I had a long discussion and I feel like it is much too long to recap but basically I told her my true feelings about having to hide the fact that I have TS in a very sincere way which ended with her crying because she didn’t realize what it was really like for me to hide from the diagnosis. She gave me full permission to open up about it over the summer and that’s exactly what I did at my program.

I told my roommate, most of my friends at the program, and even the students in my poetry class and every single one of them and I mean EVERY SINGLE ONE OF THEM accepted me and liked me and understood that I couldn’t control my tics but that didn’t change who I am one bit! The fact that I have Tourette’s didn’t affect their perception of who I was as a person and being open with them was one of the best feelings in the world.

At the program, I was myself, fully and entirely. I was the girl who writes poetry with a keen perception of the word around me, who is intelligent and intellectual and fun to be around, and who has Tourette’s Syndrome but doesn’t let it control me.

 At this point I knew I was never going back to the way things used to be. I made that promise to myself. When I came back from the program I told my mom all about it and after yet another long discussion my mom agreed that I could do what I wanted. I could tell my friends and my cousin (who also has TS)!

I felt so free and I knew I could be myself now. I could not believe how supportive my friends were when I told them that I have Tourette’s . I explained to them that I don’t have an extremely severe case by any means and that I don’t swear or anything like that and that I’m not any different than I used to be really. My friends are always there to back me up now. They never treated me any differently when I told them about my Tourette’s. They know I’m still the same person they have been friends with since middle school. They know the full me.

Sometimes I get the feeling that they already had put two and two together with a little help from the internet because none of them seemed too surprised when I told my full story.  My friends have been an incredible support. They tell me to never let the stereotypes of TS get in my way and prevent me from telling others the truth about Tourette’s, and to never let these stereotypes it affect what comes out of my soul. They tell me not to be insecure or self-conscious about my tics around them because that’s what friends are for and they always have little ways of reminding me that I’m doing great with this whole situation. They’re always there to have my back and they are what keeps me positive even when my tics get bad and noticeable. They are proud of me when I speak up about Tourette’s and would be there for me if anyone ever gave me trouble about it, but no one ever has so far.

Everyone I tell understands pretty much immediately and no one ever says anything to make me think otherwise. Everyone who I have come across has accepted me as soon as I tell them I have Tourette’s and most of the time they don’t even give it a second thought.  A lot of people now know that I have Tourette’s thanks to some of my more recent (and loud) vocal tics that my friends joke about by saying my noises are cute and sound like a pokemon which really puts me at ease.

Today I’m taking it day by day. My friends are there for me when things get tough and luckily I rarely have to feel embarrassed or self-conscious when I tic. I am also now involved with the TSA (Tourette’s Syndrome Association) chapter and attend the monthly meetings to help out with the younger kids while the parents are meeting.  I’ve met a lot of great kids and teens at the meetings and I really have been enjoying getting a chance to be a part of the TSA. Getting ready to go to college though is pretty nerve racking considering I will have to tell a whole new group of people about my Tourette’s and I will have to hope that they will be as awesome  and supportive about it as my friends have been!