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:
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