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I'd rather have Polydactyly

02/16/09

I'd rather have Polydactyly

Permalink 08:02:05 pm, Categories: Commentary

You ever wish it wasn't always all about MS? I stopped being Jen and became Jen-with-MS a few years ago. I always hear, "My [daughter, granddaughter, friend] Jennifer, she's in a wheelchair, is visiting for the weekend.” Why can't it be, "My [daughter, granddaughter, friend] Jennifer, she has a master’s degree, is visiting for the weekend," or, "My [daughter, granddaughter, friend] Jennifer, she's fascinatingly brilliant, is visiting for the weekend." Even, "My [daughter, granddaughter, friend] Jennifer, she's a tedious bore, is visiting for the weekend," would be preferable. I don't mind so much when people ask me questions or broach the subject before I bring it up, it breaks the ice and gives me a chance to show that I am okay with talking about it. But, for it to be the only thing that is ever discussed around me gets a little wearisome. No doubt, it gets pretty tedious for anybody else in the room, too. I have so many more interesting facets to my personality other than multiple sclerosis. Let's focus on those for once, shall we? Better yet, let's focus on somebody else who might have something interesting to offer. “I'm feeling fine, thank you, but why don’t we talk about Cheryl being abducted by aliens the other day?"

I know I am asking a lot. So many people have very little concept of how to conduct themselves in conversation. Either they don't know what to say, or they say way too much. Here's a thought, just act the way you would around anybody else. Anybody who has something he is tired of talking about should have little handout cards, or better yet, big block letters on a T-shirt that says, "Yes, I have been divorced 9 times, let's move on" or, "Yes, I have 6 fingers. Yes, I'm happy about it.” That way the information is out there, and we can all move on to bigger and better things. It doesn't make a lot of sense, either. I mean, I'm not awkward around people who are inordinately stupid, which, in my mind is an infinitely worse handicap. I think people need to realize that flaws are both visible and hidden, and while somebody might have a more obvious disadvantage it is actually much less dire than the able-bodied person who lacks basic personality traits.

I guess it seems like I'm talking out of both sides of my mouth. On one hand I welcome questions and hope to dispel any malaise someone may have about my situation. Yet, I wish people would realize that there comes a time when enough is enough. I know that is a pretty narrow window of tolerance on my part. I think I'm entitled to that, though. Really, I just want to receive the same silly social platitudes that you would give any other stranger off the street. I'm fairly certain most people in my situation would agree.

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