Thursday, April 30, 2015

Silence is golden

Enjoyed a call yesterday from a very much beloved doctoral-school teacher. He like me has retired (although it's gonna be a while before I use that word without the very-large air quotes... I'm [huge air quotes] "RETIRED," you see...) but like me, people call him when they need some help with something, which is why he called me.

He had very much the same experience that I did, with the college world at all levels, a rather dark place full of people all-too-easily described as "you know what you want, but you don't know what you're doing." Various people do all sorts of stuff, they congratulate themselves for doing the Lord's work, but at the end of the day, all sorts of labor is expended but the final result is... nothing. Or, tragically, something worse than nothing. But oh, they did the Lord's work, they're so proud!

This, I am seeing all over the place. Especially in the scrabbling for feeling-good-about-yourself that is endemic to the current political "process." They don't know what they don't know. And because they think they know, they have no interest in being told that actually, no, they don't know.

Neil deGrasse Tyson is a notable exception. If we don't know something, he says "We don't know."

Don't hear that much, now do we?

But that is something we MSers are all too familiar with. As a patient told my doctor, "The great thing about MS is that it makes you more sensitive to your body. The bad thing about MS is that it makes you more sensitive to your body." We are all too familiar with what's going on, body-wise; I certainly upset some MD in the hospital who had suggested/prescribed Something Fancy, who asked whether I felt the same, better, or worse, and the only way to answer was "All three."

But this is also definitely a gift of MS... to be shown in no uncertain terms what you don't know. It can take a while... too long, even... But, it's very clear what's known and not known.

This has made me not exactly welcome in the Western medical world, because I ask "Will this make me BETTER?" and if the answer's "We don't know," my response tends to be "Then we have nothing to talk about." Some things I don't mind trying; will stool softener make things better? No way to know unless we try, and if it fails, it's no worse than things currently are anyway. But things like the standard MS injectables that make one feel bad for days upon days and make you better...? How? Nobody knows?

Well then, that pretty much ends the conversation. What I do know is that it's awful, and prescribing doctors have no idea whether it does any good.

Conversation's over. Which, when you're pressing against suggestions about things like Tysabri, which has a tragic track record of turning your brain into jelly and killing you, is a very short conversation.


Silence is indeed golden.

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