Genuine Care and Support from my Camp Family

Tonight I wanted to blog about something that happened after camp. I wasn't sure I was going to blog about it, but I decided I ultimately should because others may have experienced something similar and it may help them to hear that someone else has gone though it. Also I wanted to blog about it so that I can look back later and remind myself how amazing my camp family is :)

After many months of CBIT therapy, I had pretty much gotten rid of my tics that involved hitting myself in the chest, hitting myself in the stomach, and hitting other things such as tables and walls. I was of course worried that at camp these tics, along with the others I had targeted via CBIT, would resurface seeing all the other people ticcing. I was preparing myself for this to happen, but surprisingly enough even though I saw a lot of people with hitting tics at camp, my hitting tics stayed pretty much under control during the week of camp. I had a couple of hitting tics throughout the week, but they didn't hurt and were pretty mild compared to how they used to be. Last summer at camp I bruised my stomach from hitting tics, and this summer nothing like that happened, which I was grateful for!

Mainly my vocal tics were the ones that were triggered at camp. My vocal tics were pretty active because they were triggered by all the other tics, but they didn't hurt and I was just happy my motor tics weren't as bad as they were last year. I did have a couple of motor tics triggered, of the ones I can remember, there was a tapping tic and a flicking tic, lots of facial and head tics (but that's pretty typical for me), and one night more of my motor tics were triggered from sitting in an audience at the talent show but that is also something that happens regularly at home. Sitting in an audience is a major trigger for me, probably because it reminds me of school. My co-counselor was sitting next to me and asked me if I needed a break to get up and walk around because she noticed my tics were getting more active than she had probably seen them all week, but I told her I was used to it and that this was a usual occurrence for me. I wasn't in pain, and it wasn't really bothering me all that much. Plus, I wanted to see the talent show and was preforming with one of my campers, so I wanted to wait for them to call my name.

Anyway, back to the point of the story, my tics weren't nearly as triggered at camp as I thought they would be. There were a few times I felt the premonitory sensation (the feeling I get before I tic) becoming pretty powerful, but that's also something that always happens to me at camp and something I was prepared for.

On the last day however, when emotions were at their peak, things changed a bit. It had been a very emotionally intense week for all of us. This year at camp had been one of the best by far. The connections I saw my campers making, the things my campers said to me over the course of the week, and the emotions of these events all cumulating at once at the closing ceremonies was a lot. I'm not a person who finds it easy to cry in front of others. I rarely ever do. At camp I never cry at closing ceremonies or when leaving camp, but boy do I cry when I get on the plane and get home. The emotions of leaving camp are very intense. Some of the most intense emotions I have felt in my life.

This year at camp, I felt all those emotions in the moment, at closing ceremonies and seeing all of my campers crying and the other counselors crying, I started crying too. Writing this I am being brought back into the moment, and am feeling all those emotions again. I feel the emotions for my girls. I feel them being taken away from this magical place and having to go back to the real world where people stare at their tics and don't always understand. I know what it's like, and what they go though at home so it's very hard for me to watch and to know exactly what they feel.

I loved getting to meet my girls' parents and seeing all of them off. In the past i've had to go to the airport with the bus and I don't get the chance to say goodbye to every camper, meet every parent, and have a more gradual and slow end that feels like closure. This year I got to experience that which was absolutely amazing. After all the campers were gone, all the counselors that were still there sat in a circle and went around telling stories from camp. The stories were beautiful, funny, serious, etc. I even told a story of a moment I found particularly meaningful that happened at camp.

When we were nearing the end of the circle activity and I knew it was almost time to leave, I started feeling pretty badly in terms of my tics. How my tics work is that if i'm engaged in something such as  engaging in conversation with my campers,  being responsible for making sure my campers are safe in the pool, making sure my campers get my meds, or am in any position really that requires me to be responsible of others or of the situation, I'm so focused on what i'm doing that I really don't tic all that much. Yes, maybe i'll do some vocal tics, facial tics, or some other motor tics along the way but they aren't ever anything that would compromise my ability to take care of my campers or to do what i'm supposed to be doing. It's the same thing in the hospital. When I'm volunteering with children who are receiving chemotherapy or a bone marrow transplant, i'm so focused on playing with them and keeping them busy that I barely tic. Now once I get in the elevator or back to my car and am no longer focused on whatever I was doing before, that's when more tics start to come out.

So when I was engaged in closing ceremonies, saying goodbye to my campers, and making sure they all got off safety, I was ticcing a bit but not very much. When they were all off and when the down time started, well it's essentially the same thing that happens when I'm done volunteering and I walk out of the building and back to my car. The tics start to come out more. However, because of the increased emotions and the crazy busy and active, yet amazing week I had just had, my tics were more intense. The premonitory urge inside of me started to feel very strong and very powerful in a way that made me feel almost sick inside. I don't really know how to describe the exact feeling, as its something that's very hard to describe. For me when my tic sensation becomes very powerful, the best way I can describe it (although I don't think this description gets anywhere close really to truly describing what it is to be inside my body when I'm feeling this way) is it feels like a surge of electricity or power from a electrical socket that surges up from the base of my stomach, though my chest, and to my throat and neck. It feels very powerful and makes me feel shaky afterwards almost like the sickening feeling you get under your skin when you have a fever. That's not how it feels for me every time I tic of course. But that is what it feels like when my tics get bad due to overexcitement, strong emotions, being triggered at camp, or when i've been holding back tics.

So this is how I started feeling near the end of circle time. I felt each urge to tic as a strong surge from an electrical socket coming from the base of my stomach, up though my chest and I started to feel pretty bad. As one of my friends once said.... I wasn't feeling too hot. I wasn't doing any tics that were out of the ordinary for me. Just my typical vocal tics and motor tics. But with each tic I felt this awful sensation.

Afterwards, when it was time to leave, I got my luggage together and was waiting for one of the other counselors to pull up the car. I was standing with one of the other counselors who is my friend and I was telling her I wasn't feeling very well. She said to me "I know." and I said "how do you know?". She told me she knows because I got real quiet. For those of you who know me at camp, I hardly ever get quiet because i'm always talking! That gave me a little laugh, but also another thing I love about camp is that others know when you're having a hard time or what's going on because they have been though it themselves and are so observant about these kinds of things. These are things that my friends at home would never know just by looking at me or observing me, but at camp it's pretty incredible to be understood on this kind of level. This same friend later told me she knows I never eat anything with my hands and just assumed it was my OCD. It's incredible how at camp the people around me just know these things from observing me because they know all about tics , OCD, and anxiety. They have lived it. Anyway I keep getting off track from my story.

I started having a lot of anxiety about ticcing in public at the restaurant we went out to. Even though I was surrounded by other counselors, my anxiety started getting pretty high. Because my emotions and my tic sensations were all high, I think this triggered my anxiety as well. It was just not a great time for me and I couldn't seem to shake the anxiety. Another thing I love about camp is when i'm having these kinds of feelings and this kind of anxiety, there's no need to keep it to myself, because everyone around me understands. I told one of the other counselors about my anxiety and she handed me a stress ball to help. She happened to have one that another counselor made for her. Playing with the stress ball was definitely helping at first.....and then it started triggering my hitting tics (note: I don't have tics where I hit others, just myself. For me it's about the feeling I have inside of my body and to get rid of that sensation I have to hit the area where I feel it, such as my chest or my leg. Occasionally I'll have to hit or kick a wall, but for that one it has to make a specific hallowed out noise so it has to be a wall or a table or something hard.)

I had gone though the whole week with my hitting tics under control, and then for some reason the stress ball triggered my chest hitting tics. I started hitting myself in the chest with the ball. Ironically I had seen a kick board act as a trigger for others at camp earlier, and now the ball was acting as a trigger for me.

That night when we were driving back from dinner, the tic sensation started to get really bad again. It had been bad on and off since my campers had left, but so far even though the tic sensation was worse, my tics hadn't actually gotten to the point where they became a whole lot worse. The car however is another major trigger for me, similar to how sitting in a classroom or in a lecture is a trigger for me. I think it's a trigger because its a small space and it's a space where you sit passively typically and isn't a space where you're able to be focused or engaged in something. As the tic sensation became worse and worse, I started hitting the ball against my chest more and more, and eventually it got to the point where I couldn't stop and I had to hit harder and harder each time. All in all, it was the first time in almost a year that I had lost control. As a person who always wants to be in control, it's hard for me to loose this type of control over my body in such an obvious way.

Before I had even noticed that it had gotten to the point where I had lost control, one of my close counselor friends said to me in a way that only she can say, "is there anything I can do?" I've heard her say this to other counselors when they've had trouble with their tics, but she's never said it to me before. I've never been the one whose needed for others to ask this question, and for me this was hard. It was hard that I had to be the one who needed others to ask, but in the moment having her ask was the most comforting thing. She is able to ask this with the kind of pure genuineness and care for others that is very rare. It made me feel safe and accepted. I was hitting so hard, that I broke the stress ball and dropped it on the floor and some of the flower was leaking out. I started apologizing a lot about getting flour on the car and breaking her ball and  then I started to try to look for the stress ball in between hits and she said "I don't care. Really, I don't care. All I care about is you." Again she said this in such a genuine way. I knew truly she meant what she said beyond any doubt. I still felt bad though, because that's just me, but I knew she truly didn't care. Her attitude and the way she tried to help made all the difference in how I felt. Another counselor offered me her jacket to put in between my fist and my chest, and although in most cases I would have said I was fine, I knew how hard I was hitting and said yes I would take the jacket. It helped a little bit, but what helped the most was how much everyone truly cared and wanted to help me.

I'm the type of person who finds it very difficult to accept help from others or to reach out to help, because it's hard for me to be the one in the position of needing the help. Im very independent in dealing with my symptoms and with everything else in my life really, so its hard for me to not be 100% in control. My tics started to calm down. All in all I would say it probably only lasted 10 minutes, but to me it felt like an eternity. When I stood up when getting out of the car it was pretty painful just to stand and try to walk and I found it hard to catch my breath initially when I stood. I really hadn't realized just how hard my tics had been making me hit myself. After a few minutes though of walking, I was fine. I took some advil, and felt better.

I haven't really lost control like this in front of other people before and needed others to do something like hand me their jacket so I could minimize the pain or ask if there is anything they could do, so it was very new to me to feel this vulnerable in front of others. Even though in reality compared to some of the other counselors at camp (including one of my co-counselors who had a hitting tic that was much worse on a regular basis and caused significant visible bruising) it was still difficult for me. As I said before however, what helped the most how much everyone cared about me and the incredibly genuine way they expressed this care.

I feel lucky that my tics never interfere with my ability to do things, to take care of campers, and to volunteer at hospitals. I feel very lucky that the worst my tics get is that occasionally I'll hit myself in the chest repetitively. They are not tics that interfere in any way with my ability to do my job as a counselor, to be a student at a challenging university, and to be left in charge of children at the hospital because the only times my tics get bad like this are when i'm either alone doing something very sedentary, in an audience or in class occasionally, or in a car.

The rest of the weekend, my hitting tics didn't ever get that bad again, and the hitting ones were actually pretty calm after that (although my vocal tics were the ones that were pretty active the rest of the weekend). However a few times my motor tics got a little bit more active and I would hit myself a couple of times, stomp, or kick something with my foot.

Each time my motor tics acted up a bit, the other counselors who are all my close friends from past years (expect one who I got closer to at the weekend this year!) helped me to feel so much better. One time I lost my balance a little bit because of a leg tic and one of the other counselors standing next to reached out to help me catch my balence and asked me if I was okay in the incredibly genuine and caring way that only she can do. Another time I hit myself in the chest a couple of times and the new counselor who I bonded with more during the weekend gave me a hug and said "I love you!" to make me feel better. I absolutely loved that :)

And on the lighter note, they even helped me feel more at ease about my vocal tics. I had picked up a few new vocal tics at camp this year. By the end of the week I was doing an "arf" tic and then it developed into doing a many art's consecutively like how they do it at camp when they sing the "I would walk 500 miles" song. Many times after I would do that tic, the other counselors would go "aroooohhh" in response like how they did it in the song. Also I had gained another new vocal tic where I would say "nuh-uh" and after that one many times other counselors would say "yuh-huh" in response. It made me feel a lot more at ease because when they would respond to my tics it would remind me that they accept me 100%, and don't mind my tics at all. It reminded me that i'm in an environment where tics are a part of life and can even be funny or fun instead of something that's annoying or a nuisance. All in all, you can see why I love camp and why we all call each other family :)

There's puppy on the plane!

I haven't been able to write for the past week or so because things have been pretty crazy since i've been back from camp. My mental obsessions and compulsions have really been acting up and i've had to implement a lot of strategies to help them calm down. I've also been very busy with work, extracurriculars, and studying for the GRE/ preparing to apply to graduate school. This is the first time i've been feeling ready to write and it's 12:40pm. 

I didn't want to write about too much tonight, but since i'm in the mood I wanted to tell a light hearted story. After camp I hung out with my camp family in Atlanta. We all stayed together in a suite and had the absolute best time. Even though my tics were pretty bad (worse than they have been in a while) and even though my anxiety and OCD were pretty bad as well, I felt so supported and loved. I will definitely write more about the weekend later! There are SO many fun stories, but for tonight I wanted to tell the story of the plane ride back home because its cute and quick. 

My vocal tics had been acting up A LOT during the week of camp and even though they had started to calm down near the end of my time in Atlanta, they were still kind of bad. So on the plane I knew I was going to educate the person sitting next to me about Tourette's even though I was going to try to sleep most of the way. The man who sat down next to me on the plane was speaking in spanish on his phone, so I pulled up the spanish version of "What is Tourette Syndrome" from the TSA website on my phone in case he didn't speak english (http://www.tsa-usa.org/imaganw/What_is_TS_English.pdf). They also have this brochure in Chinese, Vietname, Korean, and Japanese in case you need it which i've found comforting, particularly on planes, even though I've never needed to use it. 

When he got off the phone I introduced myself and asked him if he spoke english. He said he did, so I didn't need to use the brochure. I then told him I just wanted to let him know that I have a condition which make me twitch and make noises that I can't control. I had been ticcing while he was on the phone, and his immediate reaction was to smile and told me he understood and that it was no problem. He then, however proceeded to ask me if I had smuggled a puppy on the airplane in my backpack!! Hahahaha. I laughed and told him no, that was was just me, and that that's a noise I make because of my tics. I'm not sure if he understood what I was saying because he kind of still looked confused! I think it was either the language barrier or that he didn't believe me and actually thought I was trying to make up an excuse to hide the fact that I hiding a puppy in my backpack! 

I had a good laugh and texted my camp friends after the flight telling them the story. They said they were proud of me for telling the person on the plane about my TS (although for me that's really no big deal! I do it all the time, even if sometimes I am nervous initially). I also think they got a good kick out of the whole puppy confusion!

Being Rejected by Someone Else With Tourette's

I haven't written about this on my blog yet, because truthfully I was unable to. It was a year ago that it happened, but I haven't felt secure enough to write about it until now. It was too painful and made me too upset to even think about writing about. But it's been a full year and I feel like I have enough distance from it now and strength to let let it hurt me anymore. 

A year ago, I was a sophmore in college who had come back to school after break. Coming back to school I was more confident, but still fragile. Other people still greatly affected how I felt about myself. Of course I was coming back to incredibly accepting friends. 

On campus this year, I met another person with Tourette's. This was the the first person I had met at my college who also has Tourette's. The girl was a year older than me and I was so excited to meet another person with TS on campus! I told her I have TS too! 

She was the first (and still the only) person on campus I had met who also had TS. I saw the potential of having a friend on campus who truly understood what I was going through, who was older, and who I could look up to. I saw the potential of having someone on campus that I could have a strong relationship similar to the relationships I had made at camp. Of course I had amazing friends at school already, but the potential of having a friend on campus who also knew what it was really like to have TS was something that I felt could be really special.

I started telling her about myself and about my experiences with TS, but after about a minute she became very standoffish and distant. I was being nothing but kind and warm to her after she had opened up to me, and I was confused. After only a minute or two of me opening up to her, she suddenly said she had to go and walked away. Had I said something wrong? Now that I had opened my mouth did she think for some reason that I was just a really lame person who she didn't want to be friends with? No, I thought. I tried to reassure myself that she must have really needed to go. She probably needed to study or meet up with someone. I tried to convince myself it had nothing to do with me, but after being rejected by so many people in my past because I was different, it was hard for me to truly convince myself of this. Deep down I thought it was something I had said, something that gave me away to be a nerd or someone who was not as "cool" as she is.

Later on, I decided to send her a message. This message was kind and nothing intrusive at all about TS or anything else. It was just a friendly message. Even though she had seen the message though, she never responded. When I saw her on campus, she looked the other way, and she never talked to me again. Instead she purposefully avoided me. I had been rejected for the first time since middle school and not by just anyone, by someone else who has Tourette's. It reminded me of all the rejection I had faced when I was young because I was "different". It reminded me of the girls at sleep away camp in middle school who had bullied me and made fun of me. It was very hurtful to feel these feelings again. When I told my friends, they tried to comfort me and tell me that the girl I had met was the one who was missing out. They told me I was a great friend and that it was her loss that she didn't want to get to know me. Even with their comforting words, I still felt so hurt. To be rejected by someone who knows what it's like to be different and who knows what it's like to have TS was hard.

This year, I have seen her on campus a few times already. I feel different about it though this year. There's a building on campus where I like to get food, but it's one of the buildings where she has a lot of classes and i've seen her there twice. A year ago, I would have stopped going there to get lunch just so I didn't have to see her. I wanted to hide from her. Now though, I'm not going to give her that kind of power over me. I went to get food in that building today anyway even though I knew I might see her there. I did in fact see her from a distance, but it didn't stop me or make me feel as if I was "less" because she had rejected me.

I am confident in who I am. I have so many friends with and without TS who love me, care about me, and value my friendship. They like me for who I am. They spend time with me because they enjoy my company, like my personality, and they don't mind my tics either. They see me for who I am and don't find anything wrong with that. One person, regardless of if they have Tourette's or not, is not going to have the power over me to make me feel bad about myself because i'm not going to let them.

Today I had a thought that I had never thought of before. When I saw this girl from afar I thought "Thank god it was me who she rejected, and not one of my campers". I know how strong my campers are and how resilient and beautiful they are, but it still made me want to cry thinking of them being rejected by this girl like I was. I thought of each of them and how I would never do something like that to one of them or any other child who had Tourette's or was "different" in some way. Thank god it was me and not one of my girls is all I could think. It would hurt me to much to think of them being rejected by someone else with Tourette's. I know many of them have been through what I have and have been bullied or not included by their peers at some point in their life. To think of them having to go through this and then later on as mature young adults to have all those feelings brought back by someone like them who also has Tourette's and has also felt rejection made me very emotional. I never want this to happen to them. I can only hope it never does.

My Story! My life with Tourette Syndrome.

My Story: My life with Tourette Syndrome

(A picture of me ticcing at 3 years old)

Q:What is your name and how old are you?
A: My name is Ruthie, I'm 20 years old, and I'm a Junior in college.

Q: How long have you had Tourette Syndrome?
A: I've had Tourette Syndrome since I was 3 years old. I was misdiagnosed for a long time though and for that reason I wasn't officially diagnosed by a neurologist until I was 17.

Q: What kinds of tics do you have?
A: I've had to many types of tics over the years, but right now some of my tics are facial grimacing, blinking, rolling my eyes, head jerking, punching my arms outward, hitting objects around me with my hand, sniffing, coughing, and high pitched noises.

Q: Do you have any associated conditions?
A: I have OCD, anxiety, and sensory processing issues.

Q:What is life like for you living with Tourette Syndrome?
A: 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 , and making noises among many other things, but this is my normal. When it relly comes down to it , 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 do research with, or my Tourette's Syndrome Association friends if I didn't have TS. Tourette's has also given me confidence. 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! 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."

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: As a person with Tourette's, you can do anything that anyone else can do. 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 you have tics, you should never use the word "can't". You should never let your Tourette's be a reason you can't do something. You might have to do things a little differently sometimes, but you can still succeed and do everything you want to.

Q:What do you think other people should know about Tourette Syndrome?
A: You should treat people with Tourette's just like you would treat anyone 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. 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.

Q:What are your strengths and what do you like to do?
A: I am fascinated with neuroscience and am passionate about brain research. My college major is Philosophy-Neuroscience-Psychology (PNP) with a focus in Cognitive Neuroscience and I'm a research assistant in two labs at the medical school associated with my university. One of the labs I do research with is a lab that focuses on Tourette Syndrome and last year I conducted my first independent research study. My study focused on the sensory processing issues that many people with Tourette Syndrome have and I now have two research publications on this study. This year I'm going to continue to work towards more findings and publications.

Q:What are your goals in life?

A: Next year I'm going to be applying to PhD programs. I would love to get my PhD in either Clinical Psychology or Cognitive Neuroscience. My goal is to one day have my own lab that focuses on Tourette Syndrome research and to make a difference in the lives of others :) 

To My Amazing Camp Twitch and Shout Campers

To my amazing camp twitch and shout campers: 

I know this time of year before school can be tough. I myself am having a fair amount of anxiety about starting my Junior year of college. Tics can be rough this time of year. Remember that is normal and we're all going through it with you  

You are never alone. Even though we may not be there physically, your camp family is always with you, supporting you and sending you lots of love. As one of my campers last year said, camp lasts all year because of the memories you made at camp and the support from your fellow campers and counselors who now care about you so much.

I just wanted to let you all know that I love you, stay strong, know that I am thinking of you, and you are going to do great things this year! 

Missing Camp Twitch and Shout Today :(

Missing all my campers and fellow counselors from camp twitch and shout today! Today was the first day I could even bring myself to watch the videos I took at camp. Watching them any sooner would have been too much for my post camp depression (PCD). Every year after camp I miss my girls and fellow counselors all too much after camp. This year was a bit less of an emotional roller coaster ride compared to last year, but my PCD was still strong for a little while. Thank you everyone at camp twitch and shout for all you do to make that week so amazing for so many kids. Missing you all and a special shout out to my amazing campers (you know who you are!) Stay strong, know that I am thinking of you, and good luck with starting school. I know you all will do great things this year 

"Stand Up for What You Believe in, Even if it Means Standing Alone"

This is a post that I originally wrote in 2011. I decided to re-post it today because of a conversation I had with my mom about the night that I wrote about. I also wanted to re-post it for many of my campers from camp twitch and shout. This is something I wrote when I was only a year older than most of them! I can't even believe that! I might end up re-posting some of the other things that I wrote when I was around their age too. I think that might be interesting :) 

November 1st, 2011- 

"Today I wanted to write a post about an encounter I had with my grandpa over the summer. This summer, my grandpa took my family (my mom, my dad, brother, and me) along with my step aunt, step uncle, and two younger cousins to France. In France, we didn't eat as a large group that often, but on the last day we all ate together at the hotel's restaurant and I sat next to my grandpa, per his request. My tics had been bad that day and near the end of the meal I started shaking my legs and knocking my knees together. Everyone at the table knew I have Tourette's including my grandpa, but I was still very self-conscious about it and at the moment I really would have loved nothing more than to be able to sit still. I tried as much as I could to stop my legs, but they just weren't going to listen. I figured that this was my family, and that they understand and know it's not my fault. I tried as much as I could to reassure myself that things were alright. A few minutes later though my grandpa did something that really surprised me, especially because he's a radiologist  and went to medical school. He put his hand on my legs and said "stop that!" He even tried to hold my legs down. I said I was sorry and tried my best to keep my legs still, but after another few seconds, my tics started up again. My grandpa looked over at me again and said "Stop twitching. Your making me dizzy!" I didn't have anything to say back to him really. I just couldn't make myself stop no matter how hard I tried. After another minute, my grandpa said something that I will never forgot. He told me that I really needed to try harder and that if I really told myself to hold still, I could. He told me that if I tried, I could stop. How could my grandfather, a doctor, actually be saying this to me? At that moment, I wanted nothing more than to be able to stop.

As much as I felt surprised at his reaction, I really shouldn't have been too shocked. This was not the first time this had happened. A similar thing happened in 3rd grade when I was riding with my grandpa in his car and doing one of my first tics, sniffing. I had no idea what a tic even was, but I remember how he pulled over on the side of the road and stopped the car. I remember how he told me that we would sit there until I stopped sniffing and that until then, he wouldn't start the car back up again. I'm not quite sure how long we sat there before he realized that no matter how many times he told me to stop I wasn't going to. 

I was reminded of that moment as I sat at the dinner table thinking that I had had enough, that I couldn't stop. Remembering that moment, I decided to stand up for myself and for that child, that past version of myself, who didn't know what she had done to make her grandpa stop the car and start yelling. So, I got up from my chair and told everyone I was going back to the room and that someone else could eat my dessert. I walked back to my room and when I got back I started to cry and tic all over. After 10 minutes of ticcing and crying, my mom came to the hotel room with my dessert and tried to comfort me. She ran her fingers through my hair and told me that my grandpa had left and that everyone else wanted me to come back up. At this point I was crying and ticcing too hard to come back up though, so I stayed down in the room until I had calmed down enough to fall asleep.  

The next day my aunt stopped in my room early in the morning to say goodbye before she left for her home New York. What she said showed me that my grandpa even though my grandpa had said those things, the rest of my family accepted me and thought I had done the right thing. She told me, "I wanted to come see you before I left. Your Grandpa being a jerk last night and you really handled yourself well" and then she hugged me. I later learned that she had really defended me after my grandpa left. That night, she told everyone that I had done the right thing by leaving the table. My aunt made something that really hurt me into something that showed me that she and the other members of my family accept me for who I am even if my grandpa doesn't understand and just wants me to be normal. News for you grandpa: I'm not normal. I'm unique, creative, compulsive, and twitchy. I'm me." 

July 29th, 2014- 

Today my mom and I were walking the dog and talking. In conversation, I told her about a quote I saw that I really liked that says "Stand up for what you believe in, even if it means standing alone". She told me that she really liked the quote and that it reminds her of me and the time I stood up to my grandpa in France. She told me that I'm the only one who has ever stood up to him like that about anything and that everyone else is too afraid to stand up for him. She told me that she's so proud of me for standing up to him like that and that what I did was truly "classy" and the right thing to do. I truthfully don't know if she remembers what exactly I was standing up to him about, but I hope she does. Always stand up for what you believe in, for yourself, and for others. It might mean standing alone or stepping far out of your comfort zone, but in the end others will see your courage and strength and even more importantly you will know you did the right thing. 

Nervous about Starting School Again....

Had to lay down for about 45 minutes to support my head against the mattress while having non stop vocal tics, head and neck tics, punching tics, and full body tics. It's been quite a while since that has happened. I think one of the reasons is because i'm getting nervous to start my Junior year of college. I still have 4 weeks of summer left, but my brain always seems to want to jump ahead......I guess i'm nervous about the first few weeks of school which always tend to consist of a constant stream of explaining Tourette's to the new students living in my dorm, my new classmates, and new professors. While most of the time I actually enjoy the opportunity to educate others about Tourette's, the first week of school I end up explaining myself and educating others around me so much that I just tend to get a little frustrated with it. Also even though I've done this so many times before, I still get nervous being in environments with new people who don't know about my tics yet.

Even though i'm nervous about it, I know it will be easier this year. After my second year of being a counselor at camp twitch and shout, I know I'm more confident in general, even better at talking openly and confidently about my Tourette's, and just like last year I know I have my camp family behind me who all know exactly what it's like to live with TS. Also I have some great friends from last year who will be living with me again this year who will be there to support me. Regardless of all of this though , i'm still nervous and can't seem to shake the emotions....

Camp Twitch and Shout Post #3: Feeling Proud of My Campers :)

Camp Twitch and Shout. How in the world do I begin to write about this place and express even a fraction of the way I feel about camp? All week I saw my campers growing into themselves, stepping out of their comfort zones, accepting who they are, and for some of them being able to be free of judgement for the first time. I loved so much that every single person at camp saw them as so much more than just a person with Tourette's. The week of camp is such an incredible gift for these kids and I feel that I am a part of that. Every time I saw one of them stepping out of their comfort zone, making new friends, relating to the others campers, or opening up I felt so proud.

At the same time I found it difficult to watch them have a hard time with their tics, anxiety, OCD, sensory issues, or other associated conditions because I know exactly how it feels. I'm so much better at managing my tics and associated symptoms than I used to be. At 15 and 16, my tics, OCD, and anxiety were at their worse and seeing my campers go through what I had to go through was difficult at times. Because I know exactly what it was like to be in their shoes and because I have moved past and conquered many of the issues I dealt with at their age, I felt like I was able to comfort them and help them through their issues in a special way. I was able to say to them the things I wish someone had said to me when I was going though the same thing at their age.

So many of my campers and the things they said to me brought me right back to when I was right in "the heat" of my disorders. They brought me back to the time when at 15 I spent time away from my parents and became so distressed by my tics and OCD that I had to go home early. They brought me back to when my swallowing tic was so bad that I couldn't sleep for days because of the pain and obsessing it caused and when my OCD made it so difficult to do simple things such as walking down stairs, drinking out of a water bottle that accidentally touched the ground, letting other people use my lap top, and touching door knobs and other people's hands because of the worries and obsessions my OCD would put in my head. It was difficult to be brought back to this time, but at the same time it helped me to share my story with my campers and motivate them to keep pushing forward through the hard times in such a personal way.

My campers really appreciated hearing my story, and hearing the things I went through at their age. First of all it made them feel less alone, but also it gave them someone older to look up to who has gone through the same things they have. Seeing that I have Tourette's and the associated conditions that come along with it and am a successful college student moving towards a degree in neuroscience gave them hope that Tourette's really is not a stop sign. They also really liked hearing that I research Tourette's. A lot of kids with TS have the strong desire to either become a neurologist or somehow work with kids who have TS when they grow up so they can help others who deal with the same things that they dealt with as a kid, so I think they could really relate to the research I do and my desire to continue to research TS in my future.

I absolutely loved the opportunity to get to know all these wonderful girls! As much as I might have inspired them, they inspired me just as much if not more! I feel like I have said this so many times, but I will say it again and again and again: these kids are so strong, beautiful, and brave and I feel so lucky to have been able to spend the week with them! As one of the camp nurses 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." What she said is beyond true, and it is something I witnessed again and again throughout the incredible week of camp :) 

Camp Twitch and Shout Post #2: My Amazingly Compassionate and Supportive Campers!!!!

As those of you who have been following my blog know, I experienced a very short bout of Coprolalia about a month before camp this year. I'm not sure why it started or what triggered it, but for about a week I would very quietly say the f word. After that one week though, it completely went away and hasn't shown up at all sense then. I was really thankful when it went away, and I think it truly just was a strange fluke!

At camp quite a few of the campers and counselors have Coprolalia, so I was a little nervous that I would pick it up again. The first two days I was around a lot of people with Coprolalia and it seemed to have absolutely no effect on me whatsoever. I was feeling no urges to say curse words even though my other vocal tics were more frequent and being triggered by all the people ticcing around me. Some people even picked up my tics! It was so odd to hear other people doing my tics! One of my tics that a lot of people seemed to pick up was my tic where I say the word "no" and two people even picked up my tic where I say the word "woof".

Anyway, one night a lot of the campers and counselors were sitting in the same area waiting for something called tepee time to start everyone's tics started to go crazy! We all started setting eachother's tics off and my tics of course were being set off too. A lot of people with TS have something called echolalia which means we echo the words of others. This is one of the reasons that it's so easy for those with TS to pick up tics from other people. For me, I usually don't pick up other's tics that often, but sometimes I will hear someone tic or just say something regularly and I will echo the word back regardless of what the word is. It doesn't happen to me now as frequently as it used to when I was young, but every now and then i'll echo back a word or phrase that I hear. Sometimes I will echo back a simple word like "lunch" or a phrase like "let's go to lunch", but sitting there waiting for tepee time to stop, I echoed back fairly loudly a curse word that one of the campers ticced. I had absolutely no idea that I was going to do that and it took me by complete surprise. I was so shocked, mainly because it was completely involuntary and came with no warning and as soon as I realized what I had ticced, I quickly put my hand over my mouth and without thinking I said "oh my gosh, i've never done that before.

Even though I've had a very brief tic of saying the f word very quietly, it seems to have been a fluke and seems to be gone for good, and I have never echoed back a curse word with literally no warning whatsoever. My campers immediately noticed my reaction to my tic and I can only assume I must have looked very shocked and somewhat scared even. My campers were absolutely amazing. It was so sweet how they werew concerned about me and wanted to make sure I was alright. They weren't concerned with what I had ticced (the word was pretty mild compared to other curse words, and even if the tic would have been a more serious curse word, they still probably wouldn't have been concerned about that at all), but instead they were concerned because of my reaction. They wanted to make sure that I was emotionally okay. I told them all that I was fine, and that the tic had just caught me off guard and surprised me. I didn't want them to worry about me.

Even with this explanation though, my campers still wanted to reassure me that everything was okay and that they were there to support me just like I was there to support them. The thing that really stuck out of me is when one of my campers said to me "It's okay, we all have Tourette's here!" That was so sweet of her and it really did make me feel better! I absolutely love how amazing and compassionate all the campers at camp twitch and shout are. They are such sweet kids who care about the other campers and their counselors so much. It was a real blessing to have been able to spend the week with these kids! I always feel like I learn so much from them every year. They are so strong, beautiful, and compassionate, and I know that others out in the world will see that just as I do :)

How to Deal with Homesickness and Camp Sickness: From A Camp Twitch and Shout Counselor's Perspective

This will be my first blog post in a series of blog posts about my experiences as a counselor at camp twitch and shout! I am so blessed to have been able to come back as a counselor for my second year and I can't wait to go back next year! I have so many campers who made me pinkey promise to come back again next year as a counselor and I completely intend to keep my word!!

The first thing I want to talk about in this series, is homesickness. Homesickness is one of the first things that counselors and staff will encounter at camp regardless of the age group of the campers. I have always been with the older girls at camp, but even though they are older this does not mean they will not experience homesickness at the beginning of the week. On a similar level, the older children especially might experience "camp sickness" when they get back home. The kids experience very complicated emotions during the week of camp. They love and cherish the opportunity to come to camp twitch and shout and to be with so many people who know exactly what it's like to live with Tourette's, but at the same time they may miss the familiar and safe home environment that they are used to. Even returning campers who have been coming to camp for years are not immune to homesickness. Kids with Tourette's will often have more anxiety, so this makes homesickness even more prominent and distressing for a lot of TS kiddos.

Over the course of my two years as a counselor at camp, I have had quite a few of my older campers experience homesickness. Some of the first signs that a camper may be experiencing homesickness are not wanting to talk to other campers, wanting to stand or sit very close to a particular counselor who they feel comfortable with, and/or hanging back from the group. As a counselor what I do when I see these signs is I asses the situation and when the time is right (usually during a quiet and calm time of day), I ask them a neutral question such as "How is everything going?" or "How are you doing?" to give the camper the opportunity to open up to me about their emotions or thoughts. The camper may not want to talk about their homesickness or may in fact just be tired, so if they say they are fine or don't want to talk about it, don't push them. If they need to, they will talk to you when they are ready.

I feel so honored when a camper comes to me with difficulties they may be experiencing. Although it may be hard a first to see them experimenting difficult emotions, especially because it reminds me of exact emotions I dealt with at the same age, when they open up to me I know it means they trust me and feel comfortable with me. I also know that I have the opportunity to help them feel better and to get the most out of their week at camp.

A lot of times though the camper may be waiting for an opportunity to open up about their feelings to their counselor. They'll open up and express their feelings, especially if you give off a warm and accepting demeanor towards all of your new campers and campers from previous years that you may see around camp. In my experience, when a new camper sees that you as a counselor have strong bonds and relationships with other campers around camp, they are more likely to trust you and feel safe with expressing to you any difficulties that they may be dealing with.

When a camper opens up to you about their homesickness they may start crying. Older campers especially may express that they feel embarrassed that they are homesick and embarrassed that they are crying in front of someone who they look up to. The embarrassment about their tears and homesickness combined will certainly increase their anxiety and distress in general. So, before you can even address their underlying homesickness, I have found that the best thing to do is to normalize their feelings. Let your camper know that it's normal even for older campers to miss home and that it's okay to cry. Something else i've been able to do to normalize their feelings is to let them know that when I was their age and away from home I experienced homesickness as well. It seems to really help them to hear that their counselor, someone who they look up to, has experienced the same thing.

After their feelings have been normalized, another thing I have done with my older campers to help with homesickness is to remind them of how they have dealt with similar situations in the past. If the camper has been to camp twitch and shout or any other camp before I lead them through a series of questions to help them recall their past experience. First I asked "Have you been to camp before?", and if the answer is yes I will follow it by these questions "have you been homesick in past years?", "how long did the homesickness last before?" and "was there anything that helped you feel better in the past?". Usually a returning camper will tell me they have been to camp before, were homesick on the first day or two, and then as they got more and more used to being in the camp environment their homesickness quickly went away. Sometimes the fact that this has happened before and has quickly gone away after a day or two in the past is clouded by the heavy emotions the camper is feeling in the moment, so they will usually need to be reminded of this and be helped to recall this from their memory. Remembering how they dealt with homesickness in the past seems to really help! In addition, you're not simply telling them how to deal with their homesickness but instead your guiding them towards the answer and helping them to develop self soothing and coping strategies that they can use in the future when they may not have a counselor to turn to. In a similar way this strategy can also be used with camp sickness when the camper gets home from camp and is missing camp and their friends.

For campers who have not been to camp before it can be helpful to use the same strategy, but instead of focusing on how they felt in the past at camp focusing on how they felt the first time they went to a sleepover or spent a weekend with their grandparents away from home.

Campers also seem to really benefit from simply having someone to talk to our their emotions. They need someone kind and compassionate to listen to them and understand them. For a lot of campers, keeping these emotions inside instead of talking about them and dealing with them can cause the negative feelings to build up and fester inside of them which can significantly interfere with their week. So even if for some reason the camper does not seem receptive to the strategies I have listed above, simply have someone to talk to about their emotions can help.

It's important for campers to be able to talk openly about their emotions, but at the same time you don't want your camper to talk about negative emotions like homesickness to excess. You want to find the right balance between giving them time to express their feelings and then helping them to move forward and focus on the current moment. The more and more the camper talks about or focuses on home, the more homesick they will feel. So after they have expressed their feelings and after you have tried to help them to feel better, it's important to help them move on and to distract them. For younger campers you may want to engage them in a fun game or activity with the rest of the group of campers, and for older campers you may want to even suggest to them that focusing on their homesickness for too long may make it worse and that it will help them to feel better to focus on something else or engage in a different type of conversation or activity. When I have made this suggestion to older campers, they have come to realize that focusing on the homesickness too much does in fact make it worse and that it's important to stay focused on the current moment or current activity in order to distract them from negative feelings. Distraction and staying focused in the moment is also important for camp sickness. Make sure your camper or child isn't focusing on the past or future, but instead focusing on the here and now and it will help negative thoughts to fade into the background.

More posts to come about camp twitch and shout!!! :)

One Week and Two days Till Camp Twitch and Shout!!!

The tics are getting way crazy here as we get closer and closer to camp. 1 week and 2 days!!! Excitement, excitement, excitement!!! Even though the excitement makes my tics a bit worse than usual, camp is so worth it!!! Tonight I went to the airport to pick up my mom since she was coming back into town after visiting some colleges with my brother. As I stepped into the airport a wave of excitement came over me that I was not expecting at all! My whole body went crazy with the excitement! 

I even started smiling uncontrollably when the person standing next to me starting sniffing. Yes, they probably had a cold but to me all I could think was camp camp camp camp tic tic tic tic camp camp camp camp!!!!!! Ahh I don't know how i'm going to handle the excitement of being at the airport when i'm ACTUALLY going to camp or how i'm going to handle hearing the first few tics coming from someone else besides myself!!! What an amazing relief it will be to not be the only one ticcing again and to be among so many other people who understand what it's like to live with Tourette's! What a relief it will be to just let myself be free :)

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 :)

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.

I'm just too excited for Camp Twitch and Shout!

Camp Twitch and Shout is in 2 months and 12 days! I'm so excited and I am having trouble waiting patiently. I want camp to be just a week from now, or tomorrow! I want to know what cabin i'm going to be assigned to and who my co-counselors will be this year! I want to buy my plane tickets and start packing! Anyone have any suggestions on how to wait more patiently?! I'm just too excited!!!

Camp Twitch and Shout 2014 Summer Applications for Counselors and Campers are Up!

Camp Twitch and Shout -- One of the few places where it's cool to have Tourette's Syndrome! One of the only places where you're the odd one out if you don't tic. It's an experience beyond words. Sign up as a camper or a counselor and I promise you, it will be a life changing experience. So glad my counselor application is in for this summer! http://camptwitchandshout.org/

Top 5 Tourette Moments from the Camp Twitch and Shout Reunion Weekend

Note: These are not in any particular order! I just wrote them down as I thought of them.These are the top 5 moments that relate to Tourette's that happened during the camp twitch and shout counselor reunion weekend. 

1. I have a tic where I say the word "No" forcefully. My friends at college usually just ignore my tics which sometimes I certainty like, but other times I like it when people joke with me about my tics. So on the reunion one of my fellow counselors at camp who does not have Tourette's herself and who is super sweet and who I got to know a lot better this weekend, would say something funny to make light of the situation when I did my "No" tic. I loved this! It took all the pressure off and let me know that she accepted me tics and all. A lot of times my "No" tic comes at funny times, like right after someone asks a question or right after someone says something, so it sounds like i'm disagreeing with them very strongly! In reality, thoguh it's just a tic ! The first time I did my "No" tic around her it came at a funny moment in the conversation. In response, she laughed and exclaimed "I love Tourette's" Then many other times she would say "yes!" right after I did the tic or say something else like "but we do have to turn this way!". This made me feel really comfortable around her because not only did I know she accepted me for who I am, but I also got a kick out of the fact that my "No" tic was amusing to her.

2. On Saturday night the same counselor who would respond to my "No" tic decided to make dinner for all of us since she likes to cook. So we all went to the grocery store to get the ingredients. On the way to the grocery store the music in the car accidentally got turned up really loud. One of the other counselors we were with who does have Tourette's is very sensitive to loud noise because it always sets his tics off. So as soon as the music got turned up he started ticcing pretty severely. When we parked in the grocery store parking lot he was still ticcing a lot so we waited a few minutes before going in. He started to insist that we not wait in the car for him though so we went in together and he was still ticcing a lot. It was so sweet how one of the other counselors (the one who does not have Tourette's who would make light of my "No" tic) said "Tell me what I can do" to him to try to help in any way she could. She is so incredibly caring. She doesn't have Tourette's, had no idea what Tourette's even was before she came to camp 5 years ago, and she is such a strong Tourette's advocate. She has two bumper stickers on the back of her car, one says "Tourette's Syndrome Awareness" and the other says "Camp Twitch and Shout" and she even has a Tourette's tattoo. Anyway back to the story, when we went into the grocery store the other counselor was still ticcing badly which made me start ticcing badly too. The other people in the grocery store didn't say anything but both of us were going up and down the isles jerking and making noises like crazy! I was doing a high pitched noise that kind of sounds like a squeak or something like that while at the same time stomping my foot on the ground really hard. They could probably tell I was nervous about being in the grocery store so two of them, the guy who was originally ticcing and the girl who makes comments after my "No" tic made me feel better by saying that I looked like I was throwing the most adorable little temper tantrum and that my tics were so cute. I would usually be so nervous ticcing this much in a grocery store, but surrounded by these amazing people from camp I felt so safe and accepted.

3. On the last day when we were getting ready to leave, I was doing by stomping tic a lot. The same person who comments after my "No" tic asked me if I live in the dorms in college. I told her that I do and described how I live in a suite with three of my closest friends in college. Then she asked if I live on the second floor. I said I do. She then said "I was asking because of that tic (she was referring to my stomping tic)" and then said something like I must be friends with the people who live under me. I told her I actually don't know the people who live under me! The stomping tic was more frequent on the trip than it really has ever been at school. It will be interesting to see what happens if the tic will stick around and be as frequent when I go back to school..... Anyway the reason this is #3 is because she was curious about my tic and how it affected me at school and she just asked me so casually which is something that may seem so small to other people but in reality it is not for me! My friends from school or other people hardly ever do this. If they are curious about my tics or any other things that relate to my Tourette's they are to worried that asking would offend me somehow even though I tell people to ask me questions if they want to know anything. I wish people in the regular world were able to just ask me when they are curious about my Tourette's. It makes me so much more relaxed when other people are able to ask questions, it makes me feel like its not this huge elephant in the room.

After the grocery store we went back to the hotel/ suite and we all ate a home cooked meal together at the table like a family. It was so sweet and special :)

4. Another highlight of my tic was spending time with my co-counselor from camp. Two of my co-counselors from my cabin ended up coming on the trip and I love both of them!  The one that I am especially close to  is the one who has Tourette's, I'll give her the pen name of Tasha for my blog. Tasha's tics aren’t very noticeable but they're there. She also has bad anxiety and OCD like me. Tasha and I had the best conversations together this weekend! Of course we had great regular conversations talking about things like our dogs, things we did as little kids that got us in trouble, and talking about boys or jobs or school, but we also had a lot of great conversations about Tourette's, OCD, and anxiety. What I love is that we talk about it like its so normal, like we're talking about anything else that's a part of our life. We talk about it like it's normal because it's normal for us. I feel like I have so much in common with her and she is certainly the closest thing I've had to an big sister. I told her about my OCD and how I'm so embarrassed by it. She is the only person who is not a therapist who I have told specifics to about my OCD and I told her this. She asked why and I told her that it's because it just feels so embarrassing for me. Her response was she doesn't think it's embarrassing because she has such similar things. That really made me feel comfortable. I feel so comfortable around her and tell her things about myself that I never ever tell other people. She is also an incredibly open person and shared so much about her tics, OCD, and anxiety with me over the course of the weekend. And of course when I tic  she treats it like its 100% normal because ticcing is so normal for her. We bonded even more than we had previously bonded at camp as co-counselors and she told me many times that she was so glad I came.  We got to spend a lot of 1 on 1 time together since we got to hang out at the airport together during my layover and since we got to ride on the second plane together. When we were at the airport she painted my nails. I never let anyone paint my nails because of my sensory issues, but I wanted her to paint my nails so I put up with the bad smell of the nail polish and the initial discomfort of the polish on my nails. I felt like this was special.

5.At the end of the trip on Sunday I was scheduled to fly back home. My plane was canceled though due to weather. Luckily though the airport I flew into to make my connection is where Tasha lives! This meant that my trip got to be extended and that I got to spend more time with Tasha. My anxiety went crazy though with having the flight canceled. When my flight was canceled and when I was alone in the airport before Tasha came to pick me up, I was shaking, having major obsessive thoughts, and panicking. My anxiety is pretty irrational but it takes over my body and mind when it hits and it can be pretty brutal.  I called my mom and cried, but as soon as Tasha came to pick me up I calmed down pretty much immediately. I feel safe with her. So ultimately even though I had some bad anxiety and got pretty upset, I got to spend more 1 on 1 time with her. It was like a big sleepover! I went back with her to her apartment and she introduced me to her dog. Her dog is a Chihuahua dachshund mix and is so sweet! She is such a lap dog and will sit in your lap and sleep with her. She has such a personality and loves to play too! She also understands English and listens to her owner better than any other dog I've met. So we went out to dinner to a really nice restaurant talked and then when we got back we layed in bed and watched two great movies together, Untraceable and the Butterfly effect. Kind of like how I let Tasha do my nails even though it bothered my sensory processing disorder, she watched two semi-scary movies with me even though it bothered her OCD and anxiety. The movies were psychological thriller movies which are pretty much my favorite types of movies and she really liked them even though they were scary and wanted to share them with me. We had a great time watching the movies together. Afterwards she was a little scared, but she said because I was there with her she was okay. My flight wasn't scheduled to leave until 10:00pm on Monday night so that meant we got to spend the whole day together the next day too. We slept in late, ate lunch, and then watched the movie Date Night. Then we had dinner where we talked more too and had more good conversations! She drove me to the airport and we hugged and said goodbye! She told me that she really enjoyed our time together. I often worry and obsess about what other people think of me but when I'm with Tasha and the other counselors from camp I know they accept me, always. I don't have to worry that they think I'm weird or that they don't accept my differences. They know my differences personally because they live with them every day, to them stomping your feet on the ground, twitching your face, hitting yourself, and making noises is normal. To them going into panic/anxiety mode because your flight was canceled or having to avoid touching certain things because you think touching them will make you sick is normal. It's incredible to be understood on this level. Being at camp and being with the people from camp is the most understood I have ever felt in my life. I feel like they are all living my life. Even though we don’t have the same tics, same obsessions, or same things that trigger our anxiety it doesn’t matter; we get it and we get each other.  

Small Update about the Camp Twitch and Shout Counselor Reunion Weekend

Sorry about the slight absence from my blog and facebook page! I have been in South Carolina for the camp twitch and shout counselor reunion! I'm flying back home tonight. I will write more about my amazing time later! I had so much fun seeing my fellow twitch and shout counselors for the weekend. Now i'm staying with my co-counselor from last year due to the cancellation of my flight last night and we have been having a great time. Luckily she is here for me and has been amazing enough to open up her department to me. She says its no trouble at all and is actually glad my flight got canceled because we to to spend an extra day together. She is so sweet! Okay time to catch up with blog posts, facebook posts, etc! 

Happy Holidays From Camp Twitch and Shout! :)

Got this from camp twitch and shout today! I miss it! And just last night I had a dream about camp! I dreamt that I went back for my second year as a counselor and I loved my campers and my co-counselers a and I was having a great time. I sign of what's to come!