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!

Half a Pachelbel

Today was the first day of RA training, and it went quite well in my opinion. I got to meet my coworkers for the next year and start building relationships with them. After the training was over, three of the more musically inclined guys made their way to my room, where we proceeded to jam. We had a drumset, two guitars, and a mandolin going (all of which were my instruments except for one of the guitars). The guy playing the mandolin was new to the instrument but picked it up with surprising speed - the man's got good string sense!

We all doodled around a bit with various melodies and chord progressions, but we locked together on one in particular and had a really awesome groove going. The chords were C, G, Am, and F repeated. In the key of C (which it was,) this is reffered to as a I V vi IV progression. The C chord, being built from the first note in the scale, is symbolized by roman numeral I; the G chord is built from scale degree 5 and is symbolized by roman numeral V, and so on. This can be heard in a great deal of songs, like "Don't Stop Believin" by Journey, "Let it Be" by The Beatles, "Sk8er Boi" by Averile Levinge... you get the idea. People refer to this as the "Pachelbel chords," but this is wrong.

Pachelbel's Canon is I V iv ii IV I IV V. In the key of C, that would be C, G, Am, Dm, F, C, F, G. If we compare the first four chords of Pachelbel's canon to the other progression, you see that they're the same except for the last chord. However, this is somewhat forgivable because a Dm and an F chord are the same except for one note (D minor is D,F,A; F is F,A,C). The real issue comes in when you realize that "Don't Stop Believin'" and the other songs have four chords, but pachelbel has - count 'em - eight! That's right, what many musicians think of as the "Pachelbel progression" doesn't even have the right number of chords! For a song that uses legit Pachelbel, listen to "Graduation" by Vitamin C. That doesn't really count though, because she (they?) actually has Pachelbel's original piece playing in the background. It's a very nice tribute, but you can see how that's not quite what we're going for.

Luckily for you, you've read this blog and you know the truth. Therefore, the next time one of your musician friends tries to impress you by saying "You hear that? That's Pachelbel!" You can turn around and say to them "Oh yeah? Then where's the other half?"

My Tourette's History, Part II

So let's catch up. Last time you read, I had just gone to the emergency room for the first time. They gave me a CAT scan and some other tests, all of which all ended up negative. At this stage in the game, all of my twitches were of a purely physical nature - no vocal tics at all. So let's continue...

I went to quite a few neurologists and hospitals over the next few months. I was seen by pediatric neurologists in my hometown hospital of Mission Hospital and at Emory Hospital in Atlanta, Georgia. Not only did the doctors give me various unsatisfactory diagnoses, but they also gave different definitions of "Tourette Syndrome" and why I did not have it. Due to the irregularity of my case and my very persistent mother, I was able to be seen at the National Institute of Neurological Disorders and Stroke (NINDS) , part of the National Institutes of Health (NIH) in Bethesda, Maryland.

Just as an explanation of how cool that is, NIH only sees patients that were unable to be diagnosed or helped by other doctors around the country. They also do not provide treatment, except as part of an experiment. This way, they can focus on furthering the boundaries of medicine and not on routine procedures. I had the top 20ish neurologists in the country (plus a few interns) all focusing and talking about me and my condition. They took a video of my tics, and asked me and my family various questions about how the tics felt, when they started, and so on. By the time they came around to giving their diagnosis, the doctor assigned to talking to my family one on one (Dr. Ejaz Shamim) informed us that I had a tic disorder. "Okay, that sounds about right. Which one?" we asked. Apparently that was it... just a generic tic disorder with no real background, no character. They said that most likely the virus I had prior to developing the twitches managed to travel to my brain and mess up some wiring, causing me to have intermittent involuntary 'tics.' I did not quite have enough symptoms to be labeled as "Tourette Syndrome," but I was close.

It sucked for those few weeks that I all I knew was that I had a "tic disorder." People would ask why I was twitching and all I could tell them is basically what they could already see for themselves. The smart ones would ask "do you have Tourette's?" I would tell them no, but almost. It was difficult because I felt somewhat trapped by this incurable, undiagnosable thing that may or may not go away in time.

I remember the day (August 12, 2007) when we got the call from the doctor's office. My mother was driving me to take my driving test for my driver's liscence at the DMV. Apparently the doctors at NIH were so fascinated with my case that they consulted even more doctors and had finally decided that I did, in fact, have Tourette Syndrome. I was so relieved!! I felt like I had finally landed after falling for a very long time. People often ask me "were you sad when you found out you had Tourette's?" almost as if I hadn't noticed. "No way!" I tell them. "I'd never felt better!"

I performed marvelously on the driving test and got my lisence on the first try. As the final part of the drivers license routine, the DMV lady behind the counter asked "do you experience tremors, uncontrollable movements, blackouts..." She continued with a long list of medical issues that could perhaps impair one's driving abilities, but she had already said the important things first. My heart sank with tentative disappointment as I responded nervously with "um... I have Tourette's."

"Okay," she said with a questioning look. All that she asked was: "how do you spell that?"

(To be continued)

My Tourette's History, Part I

So let me tell you the background story.

Most children tend to develop Tourette Syndrome gradually in early life; could be anywhere around 3-10 years old, give or take. I, however, developed it suddenly at the age of sixteen. I remember the day pretty well; it was March 16, 2007, and I had just gotten over the flu that had been going around the school just a week before. I came back to Mr. Ross's third period pre-Calculus class after lunch this particular Friday, and and when I sat down and laid my hands on the desk, my right hand seemed to swat an imaginary fly, as if it had a mind of it's own. I remember staring at my hand, wondering how to react: "What just happened? Did anyone else see that? Why did that happen?" After sifting through various questions, my mind settled on one that best fit the scenario: "Did I do that on purpose?"

Throughout the rest of class, similar twitches kept appearing in unpredictable places. My feet would kick and my hands would swat at nothing in particular; even my nose wrinkled up a few times. I remember experimenting with them, trying to see how much they were caused by voluntary thoughts or some involuntary force. It seems that the line between the voluntary and the involuntary is not so clearly defined...

When I went to 4th period Music Theory, I decided it was time to say something to somebody. We had a test that day... I was going to try to take it, but my knees wouldn't stop awkwardly wobbling together and my back kept jerking straight up. Don't forget, these are large movements we're talking about here. My back was jerking so hard I had to stop writing each time it happened! Mr. Talley (a wonderful guy and band director) drove me the short distance to my mom's classroom (she taught Chemistry at my high school).

My mom is funny, always finishing "that last e-mail" for a rediculously long time. I remember walking into her classroom and saying "Mom, I'm twitching I think I may need to go to the doctor."
"Mkay Bunchie, let me finish this email," she replied without looking up from her computer.
"Okay, Mom."
(pause)
"Mike, will stop tapping your foot?"
"No Mom, that's the problem."
I remember the look of shock on her face when she realize the weight of the situation. She immediately shut down her computer and rushed me to the Emergency Room.

(To be continued)