Leb

Hello again! Today was the first day of classes for UNC's fall '09 semester, an exciting day indeed!

Two nights ago, I was with one of my fraternity brothers who was feeling down. After talking things out, we picked up guitars and made up a song on the spot. He played electric lead while I played rhythm on his steel six string; I was his support while he poured his heart out. It was an intense and deep moment, and we played for at least ten minutes without stopping or changing the music.

This particular brother is very spiritual, and has talked to me about what is called the 'language of the heart. ' I'm sure I'm not able to explain this nearly as well as he can, but it is not a spoken language, but more of a felt one. It is more of an abstract language about love rather than a language to write a shopping list or a play. In Hebrew, the word for this is "Leb." Although it does not specifically have to do with music, in that moment I felt the language of the heart between us. We didn't tell each other what was going on or what the other was going to play, but it worked and it was beautiful. I was so honored that I could be a part of that, and that we have the bond that allowed that to happen. Love - be it romantic or brotherly - is magnificent!

Dell Support

A while back I had a particularly strong tic in my hand while I was typing that resulted in the right 'control' key being ripped off.

Today I talked to Dell support about an unrelated issue with the touchpad, which they are going to replace. I asked them if I could get the key replaced as well. "What happened to the key?" the technician (José was his name) asked.

"Well... I have a neurological disability that causes me to twitch and flail my arms sometimes at random. One time my hand got caught on the control key and ripped it off."

José said that they don't normally replace things that were caused by external factors, but that he would make an exception in this case.

Thanks Dell! :-)

Tourette's History Part IV

About a week ago in RA training, we spent a day talking about diversity and identity. It was ironic because I happened to be sporting a mohawk that day as part of an ongoing joke. I don't consider myself a mohawk person, even though people said it looked great. It felt so out of place when I would reach up and touch it! At the end of this training day, we broke into our individual building staffs - a group of about twenty people in my case. The Community Director (Josh) led an activity that helped us explore our own identities. First, we each wrote a list of ten things that we consider to be very important to defining each of us as a person. My list started with "Tourette Syndrome" and included other things like "good listener," "musician," things like that. Once the list was made up, Josh asked us cross off five of those things. It was difficult, but I picked the five that I felt least connected to and removed them from my list of identity. Then, he asked us to cross off three more. I was down to "Tourette Syndrome" and "Understanding of Other's Perspectives." Predictably, the next step was to pick one more item to cross off. I sat staring at the paper, wanting my best to have "Perspectives" be the one thing that I thought defined me, but I knew it wasn't true. I drew a bold black line through it.

We went around the circle and took turns telling the group about our lists and what was left as our most central identity trait. As we went around the cirlce, many people had heavy subjects and some were emotional. I rehearsed what I was going to say in my head. I thought about how I would introduce the points that I was particularly proud of, and of little jokes I could throw in here or there to make it light. But when it was almost my turn, I looked at my list and saw a list of nine perfectly good personality traits crossed out and one horribly life-changing disability sitting like king at the top of them. All the sudden everything hit me at once and I reacted to my Tourette's in a way I had never done before.

I started to cry.

I did my best to hold it back at first, because it was my turn to speak. It was a very emotional moment and I don't remember exactly what I said, but I'll give my best shot at recreating the moment: "Today I've talked about my Tourette Syndrome a lot. Two and a half years ago I was a normal guy; I never really processed it until right now. It may not seem like a big deal, but for every tic you see, I have about twenty - and I feel every single one of them. I feel like it's a cage that I'm trying to reach out of, but crossing everything out made me just see the cage. That's... That's all I got."

I began to cry freely and to my surprise, many of the people around me did too. The guy next to me stood up and gave me a huge bear hug, even though I was to weak to stand up and return it. We continued going around the circle, although it was hard for me to concentrate on what was being said. I kept my eyes down and shed silent tears; it was so hard to think about anything or the people in the room. I felt so rediculous crying like a baby with a badass mohawk. I wasn't slowing down any, even though the next couple people were already talking. I remember looking up momentarily and being overwhelmed with the size of the cirlce in front of me. Maryam, who had also had a rather emotional list, came over to kneeled next to me and put her arms around me, which gave me the strength to stop staring at the piece of paper and crumple that shit up. Finally, we took a water break for everyone to refresh and recharge their batteries from the heavy things we were discussing. I stood up and started to head to the bathroom to clean myself up. I still hadn't recovered from my turn, and three or four people came in tears to where I was before I could move, showering me with reassuring hugs and words. It's odd to me to think that other people can be so heavily affected by something that happens to someone else, but it was very thereaputic to be able to share the moment. One person was crying almost harder than I was. She told me how great of a person she thought I was and that she felt lucky to know me. We hugged about three times; her actions meant so much to me at that moment, more than I can describe in words.

As I left the group and headed off to the bathroom to clear out my nose, I began to gasp for breath. Not knowing what was going on, I started crying even harder and louder than I had before. I didn't even make it to the bathroom; Josh and Maryam came and rescued me halfway there. I dove into them and sobbed harder than I think I ever have since I was little. It was one of the deepest, realest, most meaningful embraces I think I will ever experience. I don't know how long we stood there as I poured out the contents of my heart, lungs, and tear ducts onto them.

When I was done crying, Maryam took me on a walk around campus. We discussed each other's lives and issues and how we felt about things. We walked and talked until the mosquitos drove us back inside. Maryam is such an amazing person, always fighting for the right thing. I know that someday she will have a great impact on the world; indeed, she already has on mine.

Looking back (although admittedly it hasn't been all that long), I don't really know what exactly happened that day, or where I am now because of it. I do know that I took a step. A very large step indeed, but the direction of which I am unsure of. I guess that can only be determined by time and heinsight, right? I wish I had a better way to end this enormous post, but unfortunately I think it's just going to have to stop. I wrote this in a long, multi-hour single sitting, so I'm sure there are a bunch of errors in typing and junk like that in it. Whatever, I'll fix them tomorrow.

My Tourette's History, Part III

Pretty soon after the actual diagnosis of Tourette's, vocal tics began. Whether it was the power of suggestion or just the natural course of events is debatable, but it happened. They began as malformed unpredictable thoughts. For example, seeing my dog would make me think about having tics that sounded like a dog - a few minutes later I started growling and barking! It's a true story, I remember my poor dog looking so confused as to what was going on. In fact, I even remember beatboxing about 8 measures worth of music totally involuntarily!

After a while the vocal tics settled on a regular pattern of gibberish words. I'd blurt things like "tertabidable blibl!" and stuff like that. It was so odd because I always knew exactly what I had just said and even how one would go about spelling them, even though they were nonsensical words.

I remember the first day of my high school Senior English class, asking my teacher to let me stand up and explain my condition to the class. She had been planning an 'ice breaker' type thing anyway, so she let me go first. I stood up, told the class my name and favorite ice cream flavor, then said something along the lines of "I recently developed Tourette Syndrome. It's new to me, so I'm just as confused about it as you guys are. So you may hear me make noises and stuff, but that's just my Tourette's." I think a lot of people were particularly moved by the part about it being new to me, and all were understanding. In the same class, I did my final presentation about why disabilities awareness should be taught in public schools. As an example of what this might look like, I made a video explaining two disorders, Tourette Syndrome and Albinism. I explained Tourette Syndrome and an Albino friend of mine helped with the second part. When I gave my presentation in front of the class, everyone clapped really loudly and a few girls even started crying! I think I lost that video file before I could get it on YouTube, which is unfortunate.

Another significant moment happened one day in Wind Symphony class. It was towards the end of rehearsal and people where packing up. All the sudden I felt a vocal tic coming on, different than any of them before. I had been ticcing "shhh- shhh-" every so often, but it finally finished itself: "shhhit!" it wasn't loud, and probably sounded like any other explative. I knew it was involuntary though, which is what made it so wierd. Somehow, halfway across the room in the trombone section, my best friend Fletcher heard it and somehow understood the significance. He and I locked eyes across the room - "was that what I thought it was??" his face said. And alas it was - the dreaded coprolalia, the involuntary blurting of socially inappropriate things. Fortunately this episode only lasted about two days. For more, check out the post titled "Coprolalia."

I worked with a psychologist, Dr. Carl Mumpower in Asheville, to learn strategies to reduce the tics. We made up a technique we called "Psychido," a play on the martial art form aikido. In aikdido, the idea is to use the opponents energy to bring him down using as little force as possible. I learned how to relax and ignore the tics; I let them flow freely through my mind without actually being expressed. Once I learned this, I soon found that the vocal tics were fairly easy for me to control the vocal tics and greatly reduce the physical tics. Now I don't have to consciously think about it as much, the psychido comes somewhat naturally.

Life moved on and I started heading towards college. I began meeting other Touretters online, like Catherine, Faith, and Jimmy "Tyrannasaurus Rets." Each of us at different stages of our lives and in different parts of the world (US and UK), I felt a connection to each of them. We could talk about our experiences, and yet at the same time it wasn't perfect. All of us had differenct experiences with their Tourette's which affected how each felt towards it. I noticed very quickly that I had a very optimistic outlook on things since I had developed it after I had already settled into my high school social life and personality.

When I went to college I was able to get a single room as a disability accomodation. The logic was that I need a place to go and be able to relieve tics or stress without the worry of a roommate, or to keep him awake at night twitching (even though I don't twitch in my sleep). The plan was admittedly half legit and half a plot to not have to deal with a roommate, but there were a few nights where I got so stressed out and twitchy that having a roommate would have been bad. In that case, I guess it was worth it!

My father does public speaking on ethics part time, and he encouraged me to think about speaking publicly about having Tourette's. I liked the idea, but never really had any place to go about it. I thought it would be great if I were able to make jokes about it, jokes from my point of view. Tourette's is the funny disease, because cursing randomly is always funny, right?! I thought that by making real jokes I could educate people and make it fun! My opportunity came knocking with the Carolina Comedy Commission put on their big comedy weekend. They had various comedic events that all led up to a stand up show including Wyatt Cenac, Maria Bamford, and Lewis Black. At the last minute, I saw a sign advertizing a student stand-up competition that weekend. I had missed the deadline for sign ups but I emailed anyway and made it into the line-up. I threw an act together and practiced it in front of my dorm's housekeeper (Joseph) a couple of times, and once in front of some friends. You can see the final result on YouTube under the name Crosa Stands Up. Th next day I saw Lewis Black walking around the campus of UNC. He didn't recognize my face from the competition, but he recognized my tics. Turns out he was there watching the competition. He told me about a movie he saw once about a guy who had Tourette's, even though he "couldn't remember the name of that ffffah-king movie." It meant a lot to me that he reached out like that - and that he watched my comedy bit!

Speaking of friends, I just want to throw in that my friends are SO awesome! They're always supportive of me and (almost) everything I do! A special shout out to Bruce, Josh, Maryam, my PMA brothers, and my [then] girlfriend Charlene. There are tons and tons of people that have helped me over the years, but way too many to name!

Check out Part IV for more. I went back and separated them months later into logical sections, so some comments may be referring to things said in that one!

The Scatman

While I do haven't read anything that scientifically proves this, I've always thought of stuttering to be related to nervous tics, and therefore to Tourette's. Last night I actually listened to the lyrics of a favorite song, "Scatman" by Scatman John. I was floored by close to home the song hit, and I wanted to share it on my blog. I can't embed this particular video, so I'll post a link:

LINK!

Here's the lyrics that speak to me:

Everybody stutters one way or the other 

So check out my message to you. 

As a matter of fact don't let nothin' hold you back. 

If the Scatman can do it so can you. 

Everybody's sayin' that the Scatman stutters 

But doesn't ever stutter when he sings.

But what you don't know I'm gonna tell you right now

That the stutter and the scat is the same thing. 

Yo I'm the Scatman.

The Marching Tarheels begin!

Today was the first day of the Marching Tarheels Band camp! It was also my first day as an official trumpet, and it was awesome. Having recently picked up the trumpet it was much more difficult for me than most, but it was exciting. Last year I played on the drum line, but many there were many factors that influenced my decision for trumpet.

One of which is that a lot of the trumpet players are in Phi Mu Alpa Sinfonia, the music fraternity I am a part of. It is very exciting for all of the brothers to be back in town after a long summer without them. After not seeing them all summer, I forgot how significant it was to have so many people around me that I have such a deep connection with. No matter where we may interact on campus, the brothers support each other and mean a lot to each other.

Also, I went to the doctor about a wrist injury that happened a few days ago. I hurt it in my sleep, and after looking at the x rays it looks like it might be broken just a little bit after all. I have to go to orthopedics to get that all figured out - more about that as it comes.

More later - bed now. Goodnight, internet!

Music in the Heart

Today as an RA staff, we volunteered as a group at an organization called Club Nova. It's an organization that provides a lifestyle for people in the community with mental disabilities and handicaps. It's called a "Clubhouse Model," where members and staff both participate equally in running the organization. They have three main components of the oragnization: the house, the thrift store, and the apartments. The apartments were recently taken over by the government and are now Section 8 housing, but many of the members still live there. The house has meeting places, offices, a kitchen, and is just in general a place for people to hang out and be social. The thrift shop is pretty self explanatory, that's where I presume they make the majority of their income.

It was an odd experience being around so many people who have disorders and disabilities that are much more extreme that my own, and I think some of my fellow volunteers felt similarly. It was very clear that all of the members had a normal underlying self and personality, but there's was some barrier or difference that changes them in unfortunate ways.

The house had an upright piano wich of course I ended up at during our lunch break! Many of the same RAs from the Pachelbel post were with me at the piano, too. We talked about music theory some, discussing the difference between major, minor, and diminished triads and what exactly a seventh chord is. One of the members came over and talked to us a bit. Because of the barriers, I wasn't sure exactly what he said, but he definitely asked to sit down at the piano. He talked about listening to the radio and how he hasn't had much inspiration for a while. He mumbled something that didn't make a whole lot of sense about tuning and playing in band, so I was slightly skeptical when told me he was going to play me a pop song. He proved my ignorance when he began playing a beautiful chord progression right in front of me, complete with inversions and sharps and flats and everything beautiful. It made me remember that music is a part of all of us, and is a form of communication that bridges lingual and cultural and even disability barriers. I felt that I could experience the person he truly was, despite the differences in the way our minds work.



The video unfortunately doesn't have sound, but perhaps it's still interesting to watch.