Camp Twin Lakes XVI

A little over Twitch and Shout left, I still have a lot of vocal tics. It's fine being at camp, but it would be difficult at school. It's a little strange, most of the staff forget when I didn't have vocal tics - kind of a strange play in identity!

This past week was absolutely amazing. The camp was dedicated for kids affected and infected by HIV. I didn't realize how much people with HIV have to hide - in fact, this was one of the only camps that is openly HIV, many others operate in secrecy. The large majority of the camp were inner city kids from Atlanta. I was a little worried about how the kids would react to being in the woods and to camp in general, but it couldn't have been better.

The kids and the counselors were an amazingly cohesive group. I knew all of the counselors name within the first day (never happens) and the kids immediately identified with the counselors and gave them respect. The kids treated each other like family, encouraging each other to try new things and enjoy every minute of camp.

Many of the campers were wary of my tics at first, but during opening ceremonies I got on stage and gave an explanation of my Tourette's. I always do my best to not parallel my Tourette's with whatever special need they might be at camp for (in this case, HIV). All though it might be a common thread to share, I have no idea what they've been through and if it really can be compared. I'd much rather them make that connection on their own. With that in mind, once I explained about my Tourette's the campers took to my Tourette's in a great way. The younger ones used my tics as a greeting to me and to each other, and even started affectionately calling me "Tip," my most common tic at the time. The older ones asked me questions, and even told me about friends and family members who have Tourette's. In fact, one of the kids in my cabin had Tourette's and I didn't find out until the last day. He was beaming when I asked him about it!

Camp is amazing.

Camp Twin Lakes XVI - Twitch and Shout

Reflecting on Camp Twitch and Shout, it was a great experience and I can't wait to help them out next year. I wasn't sure exactly what I wanted to get out of the week, and it was good to go in with no expectations. I got to meet Brad Cohen, author of Front of the Class, a book about Tourette Syndrome which has meant a lot to me and others. I also got to meet Jimmy Wolk, the actor that played him in the Hallmark movie based on the book. Both guys were phenomenal at camp, and I got to be particularly close with Jimmy. Here's a (bad) picture of the three of us:

Jimmy Wolk, Me, and Brad Cohen

This summer has really pushed me towards music as a career and possibly music therapy. Brad was the founder of Camp Twitch and Shout, and I (probably) wouldn't have known about Brad had it not been for the movie. I had them both sign a little djembe that I've had for a while - a significant thing, I think!

Camp Twitch and Shout had a Hollywood theme for their dance, red carpet and all that. On each of the six doors, they put up a star with somebody's name on it. Two were the camp directors, one was the nurse, one was Jimmy, one was Tim Howard (Team USA goalkeeper, who has Tourette's), and one was for me. It was a small gesture, but a meaningful one. At the end of the night, Brad found me and asked for a picture with me. Also a small but meaningful gesture. Meeting the Twitch and Shout crew really showed me how much is being done, but also how much is still needed. I want to take this motivation back to UNC, raise some money for next year, start a group - and who knows, maybe even create some awareness ;-)

Brad and I after the Twitch and Shout dance

Camp Twin Lakes XV

Camp Twitch and Shout left today. A lot of them were crying as left the friends they had made and ventured back into the real world where tics weren't the normal thing anymore. I welled up a little bit too, as kid after kid came up to me saying how awesome of a time they had at camp. Now that I have some time, I want to write about some stories from camp that really stuck with me.

One of the kids in the cabin I was hanging out with was Holden, who I mentioned in an earlier post. Holden was a little different than most, it seemed like his parents had a very intolerant view towards his Tourette's because he continuously apologized for his tics and had a few other strange attitudes towards it. Holden did not seem to be aware of religious diversity in the world, because one day he began talking about religion with his favorite counselor, Jimmy. Jimmy was trying to avoid the subject and yet be honest. After Holden realized that Jimmy's beliefs were not the same as his own, he asked "If you're not Christian, then what are you?" to which Jimmy answered "Well Holden... I'm Jewish." Holden held it in for a while, but began to break down as soon as Jimmy left the room. Another counselor, Zack, tried to console by explaining to him that Jesus was Jewish, which further confused Holden and his religious identity. By the time I entered the scene, Holden was ticcing the word "CHRISTIAN" very loudly and almost painfully in the cabin. It was hard to tell if it was a tic or a strange sort of plea. Holden found a closet and shut himself inside it - Zack and I let him be for a while. He also started ticcing the words "JIMMY" and "PEANUT BUTTER." It's uncommon for tics to directly relate to what the ticcer is sad or upset about, but it Holden was clearly upset about things both religious and culinary. Zack got the rest of the cabin playing a round of Apples to Apples while I went to Holden's closet.

I opened the door and found him sitting - he was crying loudly and asked for his parents. After many attempts to change the subject, I told him I was kind of hungry and would like to sneak an ice cream sandwich from the dining hall and would like some company. He agreed, and off we went. We walked in silence most of the way, and as soon as we left the cabin he didn't have any of the afore mentioned tics. We made our way to the dining hall where I deftly scooped two ice-cream sammies out of the freezer without any other campers seeing. Holden and I left the building and walked towards archery. Here's what the conversation was like:

"What's been your favorite part of camp, Holden?"
"Tourette's."

"Yeah it's good to be around people like you."

"Yeah."

"Tell me about your life, man. Tell me about you."
"Well... I like... I don't like my Tourette's. I like video games."

"Me too, Holden."

After a long pause, he said: "Thanks for being my friend."

And with that, we turned around and went back to the cabin. We didn't talk about Jimmy, or Jesus, or anything really. It was just being there that helped Holden calm down.

The next day, I was reading the Sungrams during the camp news. Sungrams are little messages campers can write to one another for encouragement or compliments. I was getting towards the end of the Sungrams when I got to one in particularly scribbled handwriting. I made eye contact with Jimmy, then the slightly strange but heartfelt message:

"To Jimmy from Holden. You are a good friend. You are like my dad."

The next story took place on the very last day up on the ropes course. We had a cabin of 15 and 16 year old girls doing the high team challenge, which is a team-building challenge that we can send up to eight campers and/or counselors on at a time, thirty-five feet up in the air. One girl in this group named Emma seemed to be having a particularly hard time with her tics. She kept making a big deal of it though, apologizing and saying something about each one to the group.

"CHICKEN TERIYAKI PENIS! ooh, that was kinda strange. ORANGE JUICE CUM! Yeah, didn't mean that one..." and so on. When we were clipping her into the ropes course, she said she was worried that she would have a tic to unclip her crab claws (the device connecting the harness to the safety cable) or jump off the platform. The counselors were devided; a couple knew she was doing it for attention, while the other CTL facilitator was giving in, asking the girl if she would be safe up there or if maybe she shouldn't go. I knew what was going on, so I told the other facilitator it was fine and we sent the girl up. It took her about twenty minutes to get up the cargo net, a feat which takes most kids - even kids with tics worse than hers - about two or three. She sat on the platform at the top and waited for the rest of the cabin to get up. While she was up there, she had a few tics that made her jump off the platform (a few kids actually had that throughout the week) but don't worry, she was clipped in and perfectly safe. We got the cabin up there and began the activity, to walk across suspended pieces of wood while the group held hands in a circle. Emma began to talk about 'what if she got a tic and made people fall,' and began crying that people would get mad at her. I was starting to get very irritated, because at this point I could tell she was embellishing her Tourette's for attention and keeping the group from doing the activity big time. Instead of coddling her or taking her down, I told her to wait in the back with me while the other facilitator took the rest of the group. Emma sat patiently while the rest of the group went, and while she gave advice and direction to the rest of the group, she didn't have any major tics or issues. After the group was halfway across to the next platform, I sat down across from Emma, and thirty-five feet in the air I said to her:

"Okay, let's talk. I know tics, and you know tics. We both know that we can do certain things to make them worse. I'm calling your bluff, I don't think your tics are as bad as you're making them. You haven't had any tics since you've been up here that make me nervous about you being up here."

She got big eyes, and said "Are you saying I don't have tics?"

"Notice I said I haven't seen any tics that make me nervous about you being up here. This is Tourette's camp, I have Tourette's, and you can do this activity, there's no reason for you to be sitting out. In life, you have to work past the tics and live life not thinking about it. Once you overcome them, people will respect you for that and you'll be better for it. I know, because I have. It's hard, because as Touretters we're naturally obsessive. But as soon as that group gets to the next platform, I want you to go over and join them."

That was all that needed to be said. From then on, her tics were average, and she acted like a regular camper, not pleading for attention. She got across the ropes course, and she and I even went over one element together, holding on to each others shoulders. We talked about life, and she told me about how much positive she has gained from having Tourette's, OCD, ADHD, and a learning disability. It was a great moment, and I felt good about it because nobody else could have done that. Someone with Tourette's doesn't know what it feels like, and wouldn't have been able to call her out like I did.

That's it for tonight, it's getting really late. Don't worry though, I've got more about Camp Twitch and Shout to write about!

Camp Twin Lakes XIV

Hi again! I'm doing my best to write about Camp Twitch and Shout as much as I can, but I want to spend as much time with them as much as possible! Being around these kids have made my own tics a lot worse, but I don't care a single bit because it's such an amazing place to be. My vocal tics usually consist of "HUWOP!" "DIP," or "TIP," but there have definitely been plenty of random ones as well as some coprolalia.

I've gotten pretty close to one camper in particular, John, who has very strong tics. An example of his physical tics, he hits himself (very hard) and gives people very violent hugs, and coprolalia. He and I set each other's tics off; when I hear him tic, it makes me tic, and vice versa just like a yawn. At one point, we were walking somewhere together and it sounded like this:

"FUCK!"

"HUWOP!"

"FUCK!"

"HUWOP!"

"FUCK FUCK!"

"HUWOP HUWOP!"

We both were very aware of the situation and how strange it was, but we couldn't stop! I led a drum session with John's cabin and it wen really well. All the campers were pretty chill, and were able to continue a beat without needing to do games and to keep them going. At one point, John started having a very strong bout of physical tics and went off to the side so that he could work them out. In my own experience, going off to the side just made it worse because it only gives more attention to focus on the tics. The group was self-sustaining for the moment, so I grabbed a drum, took it to him and said "alright John, I'm going to try something."

I got up close to him, almost in his face, and said "John, play this drum. Play this drum John. Play it. Now." He reached out and tapped it when he could; when his arm ticced away from the drum I kept it going "John, just play the drum play this rhythm." I was a little nervous that I might piss him off by being insensitive, but I checked in with him later and he was appreciative. I was trying to make him concentrate on using his body for a purpose, hoping to eliminate the idle body that is like a canvas for tics. I recognized some of my own tics in him, and I think that what made me do that was that I wanted to experiment and maybe learn more about myself. It didn't work as tearjerkingly perfect as I had hoped, but it was still a pretty powerful moment for me and I hope for him too.

That's it for now - I gotta go help at paddle boats!

Camp Twin Lakes XIII

Today was the first full day of camp for Camp Twitch and Shout, the first day of sessions! In the morning, I started out with two drumming sessions with girls ages (about) 10-14. It was a lot harder than I expected - the kids were easily distracted (especially with drums in front of them) and not terribly interested in the activities I had prepared. That's okay though, I've got all week to try it again!

I also got to go up on the ropes course with Jimmy - he and I partnered up and put our hands on each other's shoulders as we walked across wires 35 feet up in the air. I got a chance to talk to him about his depiction of Tourette's in the movie Front of the Class and talk to him about it.

This week is awesome!

Camp Twin Lakes XII

Before Camp Twin Lakes, I hadn't met anybody else with Tourette Syndrome. Today I met over a hundred.

Check in for Camp Twitch and Shout was today, and it was an incredible experience. For one, my tics went absolutely crazy, I was yelling and even had some very definite coprolalia going. It was really cool, because I could see so many kids who were nervous about coming to camp for the first time. I would let out a big "HUP!," they would look at me and their eyes would get really wide and their mouths open, in awe at the guy who was like them and walking around doing important-looking stuff! It's a good feeling that my Tourette's could provide so much comfort for the kids!

Specific story time: I went to meet the cabin I would be hanging out with for the week (which incidentally Jimmy is a counselor for) and we played a game of Apples to Apples. There was one kid - we'll call him Holden - with significant vocal tics, but most of the kids had physical ones. Holden seemed to have some other comorbidities, perhaps some ADD and maybe some Asperger's, I couldn't quite tell. When we were on our way to the dining hall, Holden walked next to me. Out of the blue he declared "you're cool." After denying his claim and telling him that in fact he was the cool one, he said very matter-of-factly "I have Tourette's, just like you." It was one of the awesomest things I've heard, because it sounded like it could have been the first time he was able to take pride in his disorder - and he did it by comparing himself to me. I can already tell I'm gonna cry when they leave!

Camp Twin Lakes III

Early on, I posted a link to a Bobby McFerrin thingy that I really liked. He tells the audience what pitches to sing by jumping different places on stage and then sings over top of that. I did that today with the staff of Twin Lakes and it went pretty well! I'm looking forward to trying it with campers.

Also, I've talked to various members of staff about Tourette's, it's always nice to spread awareness! It turns out that one of the staff here freakin KNOWS Brad Cohen! Like, she works with him! I'm so pumped for Twitch and Shout!

Peace ;)

Camp Twin Lakes II

So I'm not sure if I'm going to come up with creative titles or just number posts. Whatevs!

So some history of Camp Twin Lakes, it was started as somewhat of union between a few special needs camps, such as Camp Sunshine (for children with cancer), Camp Kudzu (for children with diabetes), and others that needed a place to host their camps. The original facility was (is) in Rutledge, Georgia. Over the years demand grew and they expanded and took over Camp Will-A-Way, located in the Fort Yargo State Park in Winder, Georgia. Will-A-Way is smaller and not yet as established as Rutledge; in fact, this is only the second year of it's functioning as part of CTL. I was hired as the Music Guy (official title) at Will-A-Way, and part of that is integrating what they do musically at Rutledge into the Will-A-Way scene.

Training is being done jointly between the Rutledge and the Will-A-Way staffs this year. For the past couple of days I've been in Rutledge doing training over there, and tonight/tomorrow they're going to come to Will-A-Way for the rest of training. A few of the counselors at Rutledge have a band called the Ceetles (get it? CTL, Camp Twin Lakes...) and I got a chance to jump in with them. I played djembe (although I was prepared with electric guitar and clarinet), two others played guitar, one played piano, and one sang. Actually the keyboard player and one of the guitars all sang, they had a nice little harmony going on. We played "Love Is," "Party in the USA," and "Burnin' Up" for the other counselors and they loved it. I can't wait to play for the campers at Will-A-Way!

We also got a chance to hear from some of the camper's parents. It was a great chance to hear the struggles of serious illness from the parent's point of view, which is often forgotten. It also reminded us that what we do at camp is not just for the campers, but it also gives the parents a chance to rest. While listening to one parent who's child had a form of Muscular Dystrophy, I was reminded about my own journey with Tourette Syndrome and how much my parents did for me. I remember my mom told me once that she lost weight during the time I was getting diagnosed. Because she didn't eat. Because she was just that worried. I remembered what I felt when she told me that and my eyes started welling up in the middle of our training session! Afterwards, I went up and told the woman that she reminded me of my own mother and I asked to give her a hug since I couldn't hug mom. She consented and it was wonderful.

This summer is going to be incredible, I'll keep you posted the whole way through!

Camp Twin Lakes

This summer I got a job as an Outdoor Adventure Leader / Music Coordinator for a camp in Georgia called Camp Twin Lakes. It's a camp that caters to children with "severe illnesses and serious life challenges." Each week, a different partner organization hosts a camp meaning that each week we have a completely different set of kids with completely different needs. For example, Camp Weekaneatit is for children with Celiac's Disease, Camp High Five is for children who are HIV positive, and Camp Twitch and Shout is for kids with - you guessed it - Tourette Syndrome!

I got to camp on Monday and it's already Thursday. We've been doing training for ropes courses, and I've been learning to belay and work harnesses and hoist kids way high off the ground. I brought a lot of instruments with me and I can't wait to lead songs and stuff. Here's the banner for Twitch and Shout that's hanging in the dining hall:

I'll post again soon, I promise!

The Semester of the Rainbow

As a child, I grew up in a church that openly accepted individuals of all backgrounds. While this open statement is meant to be inclusive of all forms of diversity, everyone knew that it was particularly meant for gay (and otherwise non-heterosexual) people. I grew up being aware and understanding of the LGBTQ community and their issues, had a few gay friends, was a passive supporter of gay rights. I remember realizing early on that it must not be a choice; it would be a very silly choice for someone to make! They'd be consciously limiting their candidate pool and causing a bunch of potential controversy in their own life.

As a straight man, I'd not had many close encounters with the issue before. Nobody had ever come out of the closet to me before, nor had I had many deep conversations about it and what it means for that individual. This semester, four of my close friends came out.

Maybe I should be more specific, because 'coming out' is a different experience not only for each person but for each time they tell someone. 'Coming out' doesn't necessarily refer to the first time a person acknowledges their sexual orientation to someone else; even openly gay people can experience 'coming out' if they're telling someone new who didn't already know. Each of my friends had already come out for the first time to somebody else (close friends or family depending on the case), but I was one of the first of their friends to know. It is a very flattering experience to be trusted enough by someone for them to come out to you, and I want to share two of those (the second and the third) here on Music and Tourette's.

The first friend I want to write about is Danny. Danny pledged Phi Mu Alpha with me in the fall of 2009. We became particularly close while both learning to play trumpet together in the Marching Tar Heels. Danny and I had a tendency to laugh at everything, and laughter from one of us can get the other going like no other. We developed a very close friendship (in fact, we recently participated in a psychology study about how close friends interact!) One night after a band gig, Danny was driving me back home when he said (I'm paraphrasing) "I have something I should tell you:" after some hesitance he said (and here I quote): "I think I might be gay."

Now - at the time, my focus was drawn not to the 'gay' part but rather to the 'might be' part. I racked my brains for ways to have meaningful conversation about the 'might be,' because I assumed it was something he was trying to figure out. Since I didn’t really have any experience or anything to share, I couldn’t think of anything to say. Danny took my silence to mean that I was uncomfortable, and poor guy called me the next day to apologize for "freaking me out." :)

Later, I talked about it with my supervisor who is an openly gay man and an advocate for the LGBTQ community. He told me that people sometimes use 'might be' as a safety statement when they're first coming out. He said that when he was coming out, he used to tell people that he might be bi, even though he "knew damn well" he was gay. That conversation helped me realize what Danny needed from me as a friend – and more importantly, what he didn’t need.

In fact, Danny had no question about his preference and had already come out comfortably to his family and a few friends. He later explained that his nervousness was more about telling me personally. We had gotten so close as friends and it never came up that he was worried that the new information might not go over well with me. It didn’t really bother me at all, mostly because I had never really attributed any sexuality to Danny in the first place – therefore, when he came out, I was just learning more about him and not changing any thoughts I had about him before.

The next person who came out was Jill, also a trumpet player in the Marching Tar Heels. I had a crush on her all through fall semester and into spring. I had always been kinda shy around her, but I finally asked her to go to a dance performance with me at Memorial Hall; even though she had specified it was "just as friends," that didn’t change the fact that in my mind it was a date!

We had a good time at the show, and afterwards we went to get pizza at Artichoke Basil on Franklin Street. After a while of solid conversation, I noticed she seemed to have something on her mind. It was the same look she often had during band and around campus, the same look in fact that had attracted me to her in the first place. It was a look of introspection, one of silently enormous contemplation. I asked her what was on her mind, and after warning me of the intensity of the following statement, she said she had just gotten out of a big relationship. That was it? Whew! Relieved that I was simply going to be a rebound, I asked her to tell me about him.

"Well..." she said, "her name was Ellen."

Lots of things ran through my head, and being caught off guard I went into automatic RA mode - I asked how she felt about it, talked to her about campus resources, and so on. We were both understandably nervous; I was one of the first people that she had come out to that wasn't a close friend or family, and I had just found out why it really was just friends. The more we talked about it, the more both of us relaxed and felt more comfortable. At one point during the dinner, something she said reminded me of Danny. They seemed to be in very similar circumstances, so I told her about him. She was surprised - "Danny? You mean Trumpet Danny??" The night ended with happy feelings and a hug.

Over the next couple weeks we talked, hung out, and texted each other super often. It was one of the fastest and deepest friendships I've experienced! I tell her all the time (although she still doesn't believe me) that although things didn't turn out like I had expected, it was the best date I've been on. It was in fact the inspiration for my second stand up comedy attempt. It may seem strange to make public jokes about something that just happened, but of course I ran it by her first and looking back I think that being able to laugh it off so quickly really helped us both in the long run. We’re still really good friends – watch this video we made a couple nights ago!

Shortly after our 'date,' the three of us (Danny, Jill, and myself) decided to dinner together at Noodles & Co. It was awkward at first, but Danny started conversation like a pro and it all went marvelously from there. Now the three of us are super close - when we're around each other, we go by Otis, Marvin, and Gretchen (it's a running joke dontcha know) and do all sorts of randomness – that is, as much as Otis and I can convince Gretchen to do!

Otis, Marvin, and Gretchen

I feel so incredibly honored that both of them would share such an important part of themselves with me, and lucky that they did it at almost the same time. Just by talking, both Jill and Danny have felt increasingly more comfortable with being open about who they are. I feel a strong connection with their paths, because I think that having Tourette's can have a similar social effect. Both being gay and having Tourette's involve being born with a certain difference that is often misunderstood. In fact, I sometimes think of it as 'coming out' when I have to figure out how to tell someone nicely that I have Tourette's.

I look forward to our friendship developing more in the future! I continue to be amazed by the deep ties and connections made with people, especially those made through music and Tourette's.

The Right to Remain Silent

(This is a monologue about Tourette's inspired by others I heard today about racial equality)

I have Tourette Syndrome, a neurological condition that causes me to make involuntary movements or make involuntary noises called tics.

I've had to say that so many times. Sometimes I have to say it because something awkward happens; sometimes because I can just see people wanting to ask but just can't. It's so relieving when you meet someone that CAN ask! It's unbelievable how many can't.

Whenever I tell a new person about my disorder there's always a moment - a moment of waiting, waiting for the next tic to come. Waiting for my Tourette's to bubble up again and prove it's existence, waiting to see what they have to say in response. Sometimes they tell me that they never would have noticed, or that it's not that bad. Some even ask me if I've ever tried to stop! Oh, how I have.

You know what really gets me, though? It gets me when people think that what they see in movies and on TV is real - or even worse, funny. People tell me all the time that I should yell things just so that I can blame it on my Tourette's and get away with it. Some even have the nerve to tell me they wish they had Tourette's just so that they could do that!

But I am stronger than that because I know how special stillness is. Every second of silence that I get to spend in my ever-moving body is a gift; every single chosen word a blessing. I appreciate how wonderful it is to say "shit" or "bitch" when only that one word fits the situation. And to those people, I mean it with every single ounce of my voluntary being when I choose to say: Fuck you.

It is my right to cope to my Tourette's how I choose to. It is my right to not explain why I tic or how it feels if I choose not to. It is my right, but not my privilege, to remain silent.

Tourette's Stand Up, Round 2!

Hello friends! Remember the stand up comedy that I did a year ago? Well the same Lewis Black competition came around again, and of course I signed up and gave it another go. My goal this time was similar to my goal the first time, which was to tell jokes about Tourette Syndrome in a way that created positive advocacy. This time, I wanted to do the same, but to also broaden the spectrum and talk about not letting differences hold someone back. I think I could have chosen words a little bit better to get that point across clearer, but I'm still happy with the final product.

Friends

At this point in the new semester, I’ve had a lot of interesting interactions with people. Most importantly, I’ve had some very deep and moving one-on-one conversations with a two friends and a two Phi Mu Alpha brothers about life. These people have shown me very deep and very personal parts of their lives; until they told me, I hadn’t realized the significance that I have in their lives, and they in mine.

I am in the process of planning a somewhat large discussion about Tourette Syndrome on the 27th in the building where I’m an RA. I am inviting people to come hear my story and ask questions; “no question is too big, too small, or too personal.” Usually when the subject of Tourette’s comes up in conversation, people are very interested and have a lot of questions to ask, so I believe that the event will be a success. This will give people a venue to ask a lot of the questions they’ve always wondered and fix misperceptions they may have, and I’m glad for the opportunity!

In the process, certain characteristics of people have bubbled to the surface that I’ve been surprised to see. I remember having a conversation with someone when I first developed TS about the social implications. This person (I think it may have been my mother, but I don’t remember) said in a positive way “I bet this will show you who your true friends are.” At the time, the statement disturbed me because it hadn’t really crossed my mind that any of my friendships would change because of my newly acquired movement disorder; and as much as I can remember, none of them really did.

However, I am reminded of this statement at this point in time not because I recognize who my “real friends” are, but I recognize which ones are mature and which ones have some catching up to do. In high-school, it was common for people to suggest that I fake TS symptoms such as coprolalia for fun (the one time I faked for fun ended up being a bad experience, but that’s a completely different story). That doesn’t happen much in college anymore, especially since I treat both my TS and myself with more respect and understanding than I did in high school.

The vast majority of people at UNC are willing to accept my TS the way that I present it to them, which is that it is a serious neurological disorder and the best way to react to it is to ignore it when possible and avoid it in conversation, unless there is a legitimate question about it. It’s very disappointing to me when someone doesn’t follow those basic customs, which to me seem inherent for any disability. Usually I’m willing to be understanding if someone makes an accidental joke or misinterpretation, but there are two things that really do offend me.

One I’ve already mentioned, when someone suggests that I curse during a “funny” time, such as in class, at somebody, etc. This tells me a few things about a person; they may or may not be true, but they probably are. First, they think naughty words are funny for the sake of vulgarity. Normally, curse words are offensive because of the strong meaning they imply; therefore, if said involuntarily they have no meaning. It’s like trying to start a fight with someone by pretending to punch someone but stopping an inch from their face and saying “just kidding – gotcha, though!” This person also misses the fact that TS just doesn’t feel good. People with TS pretty much just want it to stop already! Why make more tics than are already there? In fact, blurting noises or curse words in class is something that I have a good deal of anxiety over, and something that almost happens on almost a daily basis. So no, I will not blurt out curse words “for fun.”

The second offensive thing is when somebody assumes that I’m going to blame my TS for something silly but voluntary (I’ll admit that I’ve done it before in jest, but every time afterwards I feel like such a – for lack of a better word- whore). I’ll give an example that happened recently while having lunch with a friend. We were talking very casually, and I noticed that I was using a lot of curse words. Referencing that, I said a string of them in a very conversational way. The friend looked at me disapprovingly and said something along the lines of “oh what, so now you have cursing Tourette’s?” Perhaps this was a confusing situation for the friend, but I was taken off guard. I hadn’t been even thinking about my TS at all since the conversation began, so for him to suggest that I was going to make a joke about it hit a soft spot.

Since I’ve had the educational program coming up, so far I’ve been able to respond to two of these situations by inviting them to the program to learn more. It’s perfect, because the person realizes that I want them to learn more, and they feel obligated to come. Even if they don’t come, I still got my point across. With nothing else left to say, I’ll part with an approximate quote from the Hallmark movie about Tourette Syndrome, Front of the Class:

“The point of education is to wipe out ignorance with knowledge.”

Impulse Control

I'm sitting at the Raleigh Durham Airport, waiting for my flight out to Cincinnati. I'm going to meet up with my parents and family up there for Thanksgiving (which is today). I've been rather twitchy lately it seems. My tics seem a bit stronger in trying to break to the surface. It's hard to find a pattern with these damn things, but I think I got it figured out now. I experience more tics when I'm upset about something that happened related to Tourette's. The more I think about the situation and how frustrated I am with both my TS and people's reactions to it, the more I twitch.

I often forget that TS is misunderstood even by friends. The of closest friends often say they forget I even have TS, or will mention they haven't noticed me tic even though I've totally been twitching, they're just so used to it they don't notice. It's the medium friends that I'm talking about; the ones you see on a regular basis (say, in class) but don't really hang out with much.

Now I'm known among friends for being the wacky, random, unpredictable one. That's a personality trait, not a product of TS. The other day in music theory class I was having a conversation with a friend, when I doodled something silly (a penis) on her paper. She got kinda pissed (understandably) and began to erase it. I said "my bad... you know me, no impulse control." She replied with something along the lines of "there you go, blaming your Tourette's." I was confused at first, but realized she was talking about the impulse control comment.

When I get upset I usually get quiet (which sucks) and that's what happened here. Impulse control implies some quick idea you get but keep from doing, or at least that's how I understand it. She made the connection of Tourette's, which is false. Is that what people think of Tourette's? Like the father in Front of the Class, is the thought that "Tourette's" means that these are little jokes, little things that could be controlled with concentration? I know that not everybody thinks that, but I've known this person for so long, could she really think that I want to shake my head, twitch my arms, and do all that stuff? Does she think I think it's funny? I don't know, I just don't get it. I guess I'll talk to her about it.

Where the Wild Thangs At?

Fall break is this weekend, and I've got fun stuff to report!

Thursday was the first full day of break, and it was spent almost entirely with the marching band. I woke up about half an hour late (again) to a distressed call from my section captain and close fraternity brother, Dave. I got there in time for the sound-check in the stadium, which consisted of standing in place while the sound technician got things set up for the band, Liquid Pleasure, that we were backing up at half-time.

Afterwards, my buddy Schmitty came over and helped me loft my bed. We put the mattress just as high as it would go! See, I hope to counter my oversleeping problem by hiding my bed from myself. I rearranged my desk and drums and other stuff in a very space-efficient way. I also discovered how to plug my amp directly into my computer for recording purposes... do you see as much potential as I do?!? Exciting things to come.

After that I went to the football game, which went fine. ESPN was filming the game and I almost (did) missed a step-off watching the spider-like Skycam gizmo zip over my head! The half-time show was pretty cool, we hosted the Chapel-Hill rooted band Liquid Pleasure. They're a party band that's made it pretty big along the East Coast, and have been around for almost thirty years. They did vocals while we played the rest, and it was a pretty good show. They came out in Carolina Blue sequin coats, which was simultaneously awesome and comical! Oh yeah, and there was football there, too. It was a really good game... for the other team. I don't really know first hand what happened because - let's face it - I'm only there for the band! Yeah.

The next day (Friday) my bed proved successful, as I forgot to turn off my 8:00 alarm: I stayed up since getting back in bed would be more effort than it was worth. I had a nice, uneventful day... I went to Ye Olde Waffle Shoppe, a place I'd wanted to go for a long time with another RA, Anish. I went to the gym for like the third time in my life ever with Bruce, after which we met up with Noah and a guy I hadn't met before to eat at [B]Ski's, where I proceeded to make lame jokes to the waitress.

Mom picked me up that night and we checked into a hotel in Raleigh. We were going to go camping, but the weather was just too depressing for that. Today (by which I mean Saturday) we spent the day at the NC Museum of Natural Science, which was AWESOME!! I LOVE going to museums with Mom, we're both as nerdy as a high-school science teacher and her offspring!

Oh wait...

CROSASAURUS REX ATTACK, AAAGGHHHH!!!!!

Before we went to the Museum, we went to this awesome place called Big Ed's, where I drank a bit too much coffee (it was sooo good!) At the museum this made my tics rather strong. I was a little nervous with all the little kids around for two reasons; either a rare coprolalic outburst would create a very awkward situation, or - more likely - I would whack one of them in the face with my audio-tour! No worries though, the angst of the TS was far outweighed by the sheer magnitude of visiting a huge science museum with Mom! Did I mention she's a high-school science teacher?

After the museum, we decided to go relive a bit of my childhood by going to see Where the Wild Things Are (spoilers ahead). It started out fine, by showing a harsh reality that the protagonist (Max) lived in. There was perhaps a bit too much with this reality - a stressed out single mother with a boyfriend who didn't know when to keep out of a tense family moment, an apathetic sister hanging out with like, four dudes... yeah. So whatever, I was waiting for the good part where he hangs out with all the Wild Things. After a terrifying (yet clearly imagined) boat-trip to the island, Max encounters a group of Wild Things who are frustrated with their current situation. They make him his king, everything seems close to the book, and I'm getting excited with this real-life rendition of happy childhood memories. Unfortunately it took a really dark turn and instead of being an imaginative escapist delight, it became a chilling reminder that human faults and imperfections are inescapable, even in one's own imagination. The book ended with things wrapping up in a positive ending, but the movie ended with things in a pile of depressing loose ends. After the movie, Mom and I went to Borders to read the real book again and restore my childhood.

So after our adventures in Raleigh, mom and I took a trip by the Food Lion to get some ice cream (which we devoured at the hotel) and now she's asleep and I'm blogging. Tomorrow we're planning on going to a state park or something along those lines to make some of the camping food that she brought but that we ended up not using. I'm really happy now, things are going well.

Thanks for reading!

Me

Homework Frustration

So it's 4:30AM, and I have a confirmed case of "Sundaynightitis," meaning I doodled around all through last week and this weekend and now I have to stay up late to get it all done in time. Oops, it happens. I'm still having trouble with my sleep schedule, I'm going to really focus on that this week. Goal: get to bed at 11:45 every night, and be up and OUT OF BED by 7:30 AM.

I just finished a take-home music theory exam. It's mainly on chromatic modulations through various keys. It's really cool to type the progressions out on the computer and hear what they sound like. It's awesome to have the power to whip through tonalities like it's no big deal - it sounds so fluid and carefree but there's so much work that goes into writing these progressions. It's awesome!

Unfortunately my TS is very present at the moment. I'm very aware of the fact that while most people in my current situation would be fighting only sleep to get their work done, but my battle is with simply staying still. My muscles are getting achy teeth are beginning to hurt from all the pressure I keep putting on them. My tics have been following a pattern where I'll go dormant for a half a second: my eyes close and I can't move anything. It's the calm before the storm; then a completely unpredictable tic rips through my body. Sometimes it's a (relatively) simple body jerk, sometimes my body heaves and it feels like I'm going to throw up!

A few hours ago I went to Abby, my RA Mentor, to calm down a little bit and relieve some stress. I hung out with her and another RA for a while, laughing and having a good time. It really helped to have a break like that! I love where I live and the people around me, I can't imagine it any other way.

After finishing my Music Exam I thought I'd write a little bit about what's going on before finishing up my Computer Programming, which explains this post. Anyway, I have a few things to write about once I get caught up with work, so more to come soon. Shalom!

The Next Day

I've got some good followup on my last post, as well as a little bit of clarification.

Now that my room is back in order and I've got an organized living space, I feel confident in picking up and going. I feel much more stable in daily life, waking up on time and getting to sleep at a reasonable hour. I would liken it to a stumble - you're off balance for a bit and it's not looking good, but then you quickly get your footing again and keep going. Remember that step I talked about in My Tourette's History Part III? I feel that I'm still going in that same direction. I'm not sure I can describe what direction I'm going in, or how to truly describe it if I did know.

One thing that I do know is that I'm in a new stage of life in terms of living and coping with my Tourette's. I feel more comfortable with who I am, and I feel less of a need to tell everybody and inform everybody and talk about it all the damn time. In fact, today I got a haircut. This may not seem significant, but for someone who moves their head spastically at unpredicted times, haircuts are rather intimidating! Today was the first time I got a haircut (done by somebody other than my mother) without warning the barber unnecessarily about my TS. In the past it hasn't really done anything other than confuse the person and it doesn't really do much to prevent the haircut from tic interference. Today, I didn't feel like telling the guy, so I didn't! It all worked out fine, except that I'm not really sure I like the haircut itself, because it kinda reminds me of the redneck guys from back home. The moral of that story is that old dudes are supposed to cut other old dudes's hair (I was the only one in there who wasn't balding). Women know what look good on men, and are more likely to deliver a good-looking hair cut. Or at least, that's my inference based on a single experience. Haircut:

As for the clarifaction of IFS4Y Day. CuteWithChris.com is a favorite blog of mine. He generally posts user-submitted pictures of themselves and their pets, as well as uploading a video update every so often. It's hard to describe really, because it's his somewhat cynical and snarky humor applied to various things that makes it so great. You should def check it out, although watch his YouTube videos first because they're more entertaining.

Often times people send him pictures of them after they hurt themselves or something along those lines, hoping for him to display their pictures out of pity. When people send him stuff like that, he generally makes fun of them and reminds them that International Feel Sorry For Yourself Day isn't until May 11th. In the video I linked, he starts complaining about his show, cuts himself off and says "Oh! I forgot - save it for International Feel Sorry For Yourself Day!" I included this reference in my last post sort of as a reminder to myself to stop worrying about it, because it's not May 11th! It's unnacceptable to feel sorry for yourself - unless, of course, it's International Feel Sorry For Yourself Day!!!

Life in Constant Motion

I have come to the realization that constantly twitching all the time has created a certain "microculture" to my life. That's a dumb word. I'm sure there's a better one, like idiosyncrasies or nuances or something like that... but for now, microculture works fine. Some of these things I've known for a while, and some of them are new to me; I thought it would be interesting to write them all down in one place.

Charlene pointed out the other day that I tend to be rather rough with things in general - I sit in chairs roughly, I put down forks and knives loudly, and so on. Now granted, I have always been one to wear things out quickly and not treat things quite as gently as I could. However I am convinced that this is exacerbated by the fact that my body is always doing crazy things. I'm not graceful by the nature of my disorder - I yank my head so hard that I crack my neck pretty often. About once every couple days I have such a severe tic that I temporarily loose my balance. I think that the violent nature of my involuntary movements carry over to my voluntary ones, in that I'm not as aware of voluntary disruptive behaviors because I am constantly being disrupted by involuntary ones.

Also I've found that I am always doing some kind of continuous motion voluntarily, either slowly shaking my leg or nodding my head or something to that effect. It's so much nicer to be disrupted by a tic while I'm moving a bit than from a dead standstill. Also, if I have some sort of internal rhythm or tempo going on, the timing of the tics are slightly more predictable. This constant movement may give the illusion that I am being particularly ADD (which might also play a part) or bored, when the fact is that I'm just trying to make things easier for myself.

I've known for a long time that I'm not gonna win any staring contests any time soon. Wait around a few seconds and I'll have some tic that either makes me throw my eyes away or close them altogether. It slowly donned on me some time ago that I can't keep eye contact with anybody for very long. Whenever I'm looking somebody in the eye (I've experimented) and I have a tic, by the time I get back to where they are their eyes have left and are somewhere else. This is predictable, but still slightly distressing all the same.

In my Chem 102 class last semester, I used to sit in the front row of the class. I had introduced myself to the professor previously, and he would make eye contact with me often during his lecture. Sometimes he would look at me for a few seconds, sometimes more. I started doing secret tests to see what caused him to look away. Sometimes I would wait as long as I could before twitching, and he would hold eye contact for ten to fifteen seconds. The times I would fake a twitch almost as soon as he looked at me, and he would look away immediately.

This has nothing to do with him as an individual, it just goes to show how much my tics affect normal life. Eye contact is a very important thing, especially in close conversations, yet I physically can't keep it for very long. Times that I have been able to hold it for what I normally think of as a normal, reasonable amount of time for eye contact, I've felt uncomfortable. I wish I could keep eye contact, because I think that's very important when you're trying to discuss something important.

Lastly, I tend to point things out about other people perhaps more often than I should. I'm not sure if I see them more, or if I just say them. For example, I'll point somebody out to a friend and say "look at how that person is walking, kind of pigeon toed," or even "that person has a big face." Now obviously this is not anything I would tell anybody directly (and would only say to close friends like Charlene), just an observation about somebody else's body that happened to catch my eye and interest me. I am totally aware that physical characteristics have no indication about a person's character, and I'm sure there's probably a very logical explanation in many cases. Charlene and others have told me not to point such things out before, and have said "look at that kid twitching," as if to give me perspective. But the fact is, people do say "look at that kid twitching," and I am fully aware of that. I am also comfortable enough with myself to know that I am more than a twitch and that if I were to get to know those people, they would learn to accept me based on my personality and not my Tourette's. People that would judge based on my TS, well, I don't want to be their friend anyway. That is why I feel comfortable saying "that person has a very thin nose" and know that I am not judging that person. But, other people do not have that same comfort so I ought to be more careful.

That's it for now. It's interesting to see how a disorder can cause indirect effects on a person psychologically. I wish I could see myself from a third-person point of view to get a better view of these things.... oh well!

Vision

Today in my RA class, we discussed the differences between visions and goals and how each of those are different in each other's lives. As an exercise, everyone wrote down thier vision in marker on a sheet of paper. This vision could be something we wanted to change at the university level or nationwide or globally. We taped these sheets of paper on the wall, then everybody got the chance to read the visions and give feedback by writing things down on post-it notes and placing those on the wall next to the visions.

I wrote that my vision was to "spread advocacy and awareness about Tourette Syndrome, changing the stereotype." After class, I looked through the notes people had left on my vision. I waded through the various notes, all of them positive and one or two that were illegible. One post-it stood out to me. It said: "Your story is being used to change the lives of others. Very encouraging to me!"

I don't know who in the class of fifteen wrote this note, and I don't know if they know me or know my story at all. But, the note touched me because it reassured me that what I'm doing is not going unnoticed. That my blog actually has a purpose, that the hardships I go through now will translate to less stressful situations for others in the future. I taped the post it onto my laptop right next to the touchpad so that I can see it everyday.

Thinkin' About Monkeys

I found pretty early on that it's hard to read most Tourette's literature. The only one I've found motivating is "Front of the Class" by Bradley Cohen. I liked it because he never stopped doing - he kept on living his life, forcing his way through all the bullshit that people kept giving him for his Tourette's.

I had trouble reading the books "Icy Sparks" and "Don't Think About Monkeys." I think that these books are good for the non-Touretter, but I just can't stand to read them. It seemed to me like these books were ways to express pain, to show how much having Tourette's sucked. I already know this; I don't need a book to tell me. I couldn't even get through the books, I just didn't want to hear about how depressed these people were!

On the other hand, about a month before I met Charlene, she read the book "Icy Sparks." Before this, she hadn't even heard of the disorder - how fortuitous that she would read it right before meeting me! That just goes to show how important audience is, I guess. For now, I'll just keep thinking about monkeys.