I recently worked with a woman on a short-term basis. Intelligent, an elder stateswoman in my field, and the sort of person who has the tendency to talk as if you're having a conversation and then not listen as you respond.
At the beginning of our assignment, she was catching a cold and inevitably, by the end, I had picked it up. She gave me her remaining cough drops and condolences, saying something to the effect that she hardly ever gets sick, and going through this bout gave her sympathy for people who deal with long-term, chronic illnesses, you know, for what they must go through. I stood there, silently debating whether I should say something, and decided not to.
It struck me how odd it is, to be in a situation where someone, had they the knowledge, would never dream of saying something potentially hurtful, yet because they can't tell from looking at you, they make a completely blameless yet painful remark. I wanted to say something like "Well, it might surprise you to know that I've got partial, permanent vision loss in my right eye due to MS and, darn it, you just never know what the sucker's gonna do next." Or "I understand your feelings. As it turns out, I have MS so one of the very people you're feeling for is standing right here."
Yet, given the likelihood that I'll never see this woman again and her propensity not to truly listen, I decided there wasn't much to be gained.
I've been deciding that a lot lately when I think about telling people. It's not like me to withhold--whether that's a strength or a weakness is debatable. Probably either, depending upon the situation. But for me, it's always worked better to "talk things out," as my father calls it.
Plus I want to be able to make MS part of a regular conversation. "Hey KG, how's work? How's your husband? How's the MS?" Something you can talk about that doesn't get The Reaction.
The Reaction has come to me in several forms. The most common is for people to continue to talk to you as their eyes widen and grow distant, not knowing what to say even as words are dripping from their mouths. Another version is where the person uses a lot of expletives and interjections, as in "Wow! Sh*t! Geez! That's f**ked up! Gosh! F**k!" And there's another slightly more rational version where the person says "You know, I know two/three/five/twenty-eight/ninety-six other people with MS" and proceeds to tell you about those who are faring the worst (I've gotten better with those--I cut them off by asking them to only tell me positive stories about other MSers, thanks.)
I hope this all doesn't sound bitter. It isn't. It's just so darn American.** I mean, we do not do well with bad news, people. We don't like it. We don't like pain and we're not well-equipped to deal with it. Suffering is not supposed to be part of life. Feeling bad? Shop! Feeling too bad to go shopping? Shop online!!
Me, I'm not one to hold back. (Shocker!) I just want to be able to talk about this thing without it dropping the floor out from under the person I'm talking to. I want to normalize it, make it smaller by making it part of the ordinary, everyday lexicon. But, as the jazz group T. J. Kirk's latest album title asserts, Talking Just Makes It Worse.
I suppose if I had visible symptoms (and apologies to those of you who do), it might a) alert people that there's something going on and b) prevent them from saying something awkward. Of course, I could be entirely wrong. Do those of you who walk with a cane or are in a wheelchair find you meet people who you can tell are itching to ask why you use a cane or a chair but don't dare? Do they come out with, not to put too fine a point on it, plain-old stupid remarks? Do their looks just speak volumes?
It's sad that we don't retain some of the innocence of children. Little kids will run up to you and say "Hey, how come your hair is blue?" for the very, sole, exclusive, only purpose of FINDING OUT. No hidden agendas. No ulterior motives. You can take them by their word and at their intention. They merely want to know and understand.
I guess that's all I reallly want from anyone. For them to want to know and understand.
**Which is not to say that we Yanks have the lock on inability to deal with painful topics. I'm sure other cultures have their unfair share. But I'm American so I can only speak from this vantage point.
Last edited by kareng7
on Sat Nov 12, 2005 12:43 pm, edited 1 time in total.