August 15th, 2005

"I was in a Printing house in Hell ... " - William Blake, in The Marriage of Heaven and Hell

"I work there ... " - Me, in a fit of frustration ca. 1987

* * *

Since I was about 20, I've had an expression that I employ to describe certain situations:

It is akin to the sayings:

So in the last few months there has been something of the "well-meaning but ill-thought-out" variety that has been really banging my bongos: Free, uninformed, mindlessly hopeful, and just plain stupid advice that I am supposed to pass along to my sister Carolyn.

Now Carolyn, in case you don't know, has Multiple Sclerosis and had two severe attacks in rapid succession last January. She has spent the last 7 months recovering, though she is soon about to leave the hospital and come home. Anyhow, Multiple Sclerosis is common enough that, through the "six degrees of separation" phenomenon, pretty much anybody you care to talk to knows at least one person with it. And that seems to give a lot of folks the idea that they are experts and know just the thing to cure Carolyn wholly and permanently. (Again, as I said, it is mindless wishful thinking; people seem afraid to face the fact that this world really sucks and is unfair ... and that their hopefulness won't change a thing about it.)

The examples range from the stupid-and-possibly-dangerous (extreme doses of echinacea) to the "saw it in a movie/magazine/book/side of bus", such as Lorenzo's Oil. (About that, by the way: It was a great movie, I went to see the movie because it had one of my favourite actresses in it—Kathleen Wilhoite—but left the theatre quite moved by the story. Still, I can make the distinction between preachy near-fiction and a solid understanding of the medical realities of treating someone with a neurological disorder.)

I guess the reason is that there are so many people out there willing to leave the details of MS or Parkinson's, Huntington's, etc. as a complete mystery and let their imaginations carry their opinion that some miracle cure exists for all of them. I usually ask people if they even understand what MS is. They either clam up or bluster over the fact they don't know by telling me it doesn't matter. In both cases I tell them what little I know from my own researches over the years and then ask them to provide the details of the mechanism that their proposed miracle cure takes to cure the problem. That is, in medical terms, what is their methodology?

I once saw a cartoon in a magazine where two scientists are standing at a blackboard. There are mathematical symbols at the top, a solution at the bottom, and in the middle the words, "Then, a miracle happens." One scientist is asking the other for clarification of the middle part. Well, that's how I feel when people come up with their well-meaning, but ill-thought-out crappola cures. I want to know how they think their advice for Carolyn really works.

And why am I such a curmudgeon about this? Simple: This is not some exercise in hypothetical treatment of some random unknown creature like a lab mouse or a nematode ... this is my sister's life these thoughtless idiots are proposing we all play with. And the really sick part of it all is that these people are so invested in thinking there is a miracle cure because of what I said earlier: they can't handle the unfairness of life; they need there to be a miracle cure for everything; they are afraid for their own little "safe" worlds and what it all might mean to them ... and they are willing to kill my sister to try and stay feeling safe in their own little morally-weak stance.

It all boils down to this: They want to sacrifice the infirm and the disabled so that they can give themselves a chance to feel safe a little longer.

Well, here is what I have to say to that: "Bad things happen to good people; but don't live in fear of it, just be ready for it."

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