Monday, May 24, 2004

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Random nibblets from the last week:

I got an email from Man A. and was surprised at how visceral my reaction was. It's a shock when your palms start to sweat, even though your brain stays calm. Luckily, it was a mass email about the draft starting in 2005, taken from an independent Vancouver weekly.

Man A. has also put up a personal ad on the Net. I found it last night by chance and couldn't decide whether to laugh or barf. After laughing for several minutes, I decided that I'd made up my mind. It's almost impossible, no matter how nice you are, to write a truthful personal ad and not come out looking like a complete prat.

Thanks to E. for the word "prat".

Speaking of E., the world's most compulsive matchmaker...

Mystery Man, the person E. wanted me to meet via email, actually emailed.

(pause for gasps of disbelief)

He sounds interesting. And paradoxically courageous. It's easy to be frightened and whistle in the dark as compensation; it's harder to admit that you're that dented can of green beans and keep on going anyhow.

Now the hard part starts

The woman with God Only Knows What had a decent day yesterday. She had almost four hours of only coarse tremors of her head, legs, and arms, with no spasms.

Then the spasms started, when she wasn't distracted, and after she and her husband and I had been talking about her prognosis and her drugs.

She asked me, in the midst of a spasm that made the musculature of her neck stand out like a dissection, "Will this ever get better? Will I ever be able to *do* anything again?"

The answer I gave her was yes and yes. What else could I say? That she'll probably return to some level of functioning with careful medical management and a load of expensive and wacky drugs? That she won't be able to maintain that level for long, and eventually her brain's going to start to go? That's the truth, but it's too ugly. Hell, it's too ugly to even think, let alone say.

The beauty of CJD (not the variant that comes from beef with screwy prions, but the ordinary sort that hits humans in their late 60's or 70's) is that the patients seem unaware of what's happening to them. They get distant. They'll still respond appropriately to you, and to their family members, but there's a sort of curtain there that they can't and don't want to break through.

By the time their limbs start contracting and their pupils stop, there isn't much higher brain function left. It's as though the person has been de-souled.

Cut me some slack here

Patients with traumatic brain injury who will never walk or talk or feed themselves again and who lie, their limbs contracting into the fetal position, in air beds, nonetheless are *home*. You can look in their eyes, no matter how severe the damage is, and see *something* human.

People in the last stages of CJD don't have that behind their eyes. It's as though someone has come in and pithed them, like a frog, removing whatever it was that made them them...and worse, removing whatever it is that gives them a sense of commonality with other people.

It's frightening. Not can-of-beans frightening, or avoid-a-wreck frightening, but deeply and darkly scary.

I was talking to a fourth-year resident about a CJD patient I'd had and said what I said in those two long paragraphs above, thinking that he'd laugh and give me some sort of mechanical explanation for what I was seeing and feeling.

He agreed with me.

So back to reality

So my patient with the undiagnosed illness can be seen as being blessed by having an intact brain. Or cursed with the same thing. There won't be any quiet retreat into apathy for her until much, much later. She'll be aware of what's happening most of the way down the path.

Whether this is a good thing is not my call.

Much, much lighter

My current favorite T-shirt is the one I'm wearing right now: baby-cut, with a wide neck and a drawing of two cartoonish semi-robots. The logo is "Robots like Brave Combo too." One of the robots has an artichoke on his head. It was the artichoke that decided me. Robots and artichokes: what more could you ask?

I realized last night on the drive home that even if I were driving the only car on the highway for, like, fifty miles, I would still check my blind spot before changing lanes. I don't know what this says.

My beloved sister sent me a box of Anne Taintor treasures the other day. If you don't know who Anne Taintor is, I would suggest typing into your location bar and checking her work out.

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