Let's Talk Tourette's

Today I had my first real public speaking gig about Tourette Syndrome. With the help of two other RAs, I put on a building-wide program called "Let's Talk Tourette's." We set up the Game Room so that there were sofas and chairs available sort of semi-circled around an arm chair which I sat in. I didn't have much planned to say, but everything came out very naturally anyway. I told the group about my history, and a little bit about the disorder itself. I explained that I find people tend to have questions about my Tourette's, but often don't feel comfortable knowing if it's appropriate to ask. I told them that no question was to personal, too big, or too small. I was asked some very good questions, which usually lead very long answers.

Twenty-seven people came out to hear me talk, which I think was a good number. A couple PMA brothers and even an alumni came to support me, as well as a couple friends who didn't live in the building. To me, I felt there were a lot of people present, maybe even uncomfortably so; but later, even people who who were sitting in the back said they felt it was a very relaxed and intimate experience.

I can't wait until next time!

New Guys

It's that time of year when Phi Mu Alpha is beginning the pledge process for a group of new guys. In fact, official installation of the potentials to probationary members is tonight! I wanted to write about an incredible experience involving both the potentials and the brothers. On Saturday, we delivered bids (which are formal invitations to join PMA as a probationary member aka pledge) and asked them to meet us in the Hill Hall auditorium at 10:00 PM if they wished to accept the offer. As it got close to 10:00, I hitched a ride to Hill Hall in a carfull of brothers and potentials. The energy between everyone was tangible, as everyone was curious to see who was going to be there!

When we got to Hill, the group I rode up with stood in the rotunda outside the auditorium chatting with some brothers. I thought I heard faint singing coming from the auditorium, but I couldn't see anyone in there. When I went to investigate, I found a group of about four or five brothers and a potential or two standing around a brother playing piano backstage. They were singing "Piano Man" which carries significance to my own pledge class. I joined in, and as the song progressed more and more joined in. By the end of the song, there were probably twenty to thirty men all standing with their arms around each other, belting out "SING US A SONG, YOU'RE THE P'ANO MAN!!!" It was a great bonding experience having everyone join in like that!

After a while we all congregated on the stage and began to discuss where we were going to eat for dinner to celebrate. For some reason that's still unknown to me, somebody started clapping a rhythm; it was a rhythm similar to the one in John Fogerty's song, Centerfield. Somebody started clapping the off beats, and I started making sixteenth notes in between the eighth notes. The next thing you know, everyone was clapping and stomping their own rhythm. It was an impromptu drum circle, and everyone had a blast just playing whatever rhythm came to them. It went on for several long energy-filled minutes. When it finally fizzled out, everyone applauded each other and asked "What the hell was that, what just happenened!?"

I'm excited to begin the pledge process with these guys, we have a really impressive group of guys. I think that the two spontaneous musical events that happened up on that stage show just how strong of a music fraternity Phi Mu Alpha Sinfonia is, and what it always will be.

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.”

Talking to Faith

So I got a webcam recently so that I can video-message people. A few days ago, I called Faith, a girl in Georgia who has Tourette's who I met on Facebook. We talked for about an hour about random things, life and Tourette's and such.

Tourette's affect is mainly an audio/visual one. That is, TS causes a problem because other people SEE or HEAR the tics and react based on that. I've not yet met anybody else face-to-face with Tourette's, so being able to see somebody else was an incredible experience!

So if anyone else has Skype, give me a call! michael.crosa is my Skype name.

Matthew

I was in the Atlanta Airport yesterday, on my way to see family Orlando. I had my laptop open, but wasn't really doing anything on it. A man sat a few seats over brought his laptop over and sat next to me. He was somewhere in his thirties, African-(newly)American, wearing a very nice tan overcoat, and had a wide and endearing smile. He asked if I new how to connect to the internet, and opened his new-looking Mac on his lap. We eventually figured out that the Hartsfield-Jackson charges like five dollars for something for twenty minutes internet, but that's not really the point of the story anyway.

He noticed that my computer's background image was music, something my friend Maressa had helped me choose only a week or so before. He told me he plays keyboard and clarinet and that he directs a choir in Charlotte NC, and that he was on his way to a global choir convention (or something like that) in Orlando.

Ironically we ended up sitting close to each other on the plane, but not close enough to converse.

I ran into him during the ritualistic trek of passengers to the baggage claim, where we struck up conversation again. I found out that's he's from Ghana, in West Africa. I told him I had a friend (Maressa) who studies Ugandan music - he liked to hear that, and said good things about Ugandan musicians.

His story is amazing. He was a musician in Ghana, and had visited America a couple times. On his second visit, he was invited to be the choir director for a Methodist Church in Charlotte. He's now lived here for about six years, his wife and daughter moved to the country four years ago, and He began to talk about how wonderful America is, a professing his love for the country. His big smile grew even wider as he talked about the amazing opportunities available to our citizens, especially for him and his family. He seemed very proud of his English; it was apparent that he was working very hard to learn and improve.

His subject shifted to religion as he talked about what is possible with the power of God. I could see many powerful feelings come over him as he testified to me the power of Jesus Christ. At first I was a little surprised that he didn't ask about my religion, but in retrospect it was nice, really. He was simply telling me the power of his beliefs, not trying to convert me or anything like that.

It was an awesome experience talking to a man actively improving the life his family. It was also great to be reminded of the amazing benefits of living in America, especially with the anti-American sentiments floating in from around the world and even the constant criticisms of our own government coming from the inside. I think we could all benefit from meeting more people like Matthew in our lives.

:)