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101

Numbers

Numbers (from Redfin)

Numbers rule the modern world. How many imported BBC documentaries, their tone at once serious and easy, laid bare this dolorous truth, a truth destined to reduce beauty to facts. Here in the computer, some white-haired and snaggle-toothed owl intoned, is our digitized future: quantified, discrete, reduced. 

Maybe. James Burke ends his great Eighties series The Day The Universe Changed on a Himalayan foothill, the sun glinting off the computer chip he holds out on a fingertip. In here, you can say everything, build anything, create the world as you want it. And what kind of world will that be? 

He asked a big question and my fifteen-year-old self wasn’t quite sure what he was asking, but my answer was confident: the machines would free us. Machines that did not forget and did not make mistakes–tenets held by any science-fiction reading kid–would smooth dangerous emotions, provide objective truth, their answers as solid as the forty-two from Douglas Adams’ Hitchhiker’s Guide to the Galaxy. Except real machines, free of Adams’ tomfoolery, would provide The Right Answer. Real Machines could not possibly be as ridiculous and neurotic, and operated by such ignorant clowns that were ultimately sociopaths, as the ones Adams imagined.

Hitchhiker’s Guide and Burke’s programs are mirror images of the same Eighties zeitgeist, though one is serious and one is funhouse distortion. Both are fictions, interpretations of one man’s vision, one teasing a thread of history to our ultimate inevitable present, the other projecting outwards how ideals usually end up. Both embody Cocteau’s dictum on fiction: I am a lie that always speaks the truth. 

My CD-57 is back. This is a lab test, ordered by my doctor at my last visit. The CD-57 test isn’t too hard to explain, but there’s no need to bore you in depth (that can be an exercise for the reader). It is a blood test, and its result is a number. The lab helpfully provides some ranges and interpretation of your result in comparison to a statistical sample. The paper features a small table of values, one range unflinchingly marked normal.

This number isn’t like the deterministic, inviolate ones you learned in school. It is a vaporous thing that hovers in the flickering light science carefully tends against the shadow of our ignorance. Nothing is certain, nothing is proven in the way tobacco companies use the word proof to weasel out of courtrooms. Show the number to a roomful of doctors (who understand what it’s for) and you’ll get Bible-thumping certainty to the most Jewish shrug. Eh, it can mean anything. 

Since getting sick in 2002 I have been tested and retested. As those first years wore on the white-hot shock waned and was replaced with the soft-focus memory of donating blood plasma for ready cash in college, two hours with a big needle in my arm for fifteen bucks. (I lasted about six months: the needle just got too big.) The needles are smaller now, even if they go in the same place (marked by a scar’s lips), but  insight needs the smallest of openings. So many tests: AST, ALT, CBC, CD4a, ANA, CPK, myoglobin, many others. These last two were the first objective proof–to doctors and insurers–that I wasn’t nuts: results wildly abnormal. They indicated the destruction of skeletal muscle from some unknown process, which would at least explain the pain. The doctors shrugged. One suggested steroids. I will never trust steroids again.

CPK (or sometimes just CK) and myoglobin came down to normal, though I didn’t feel much better. Sometimes the CK would shoot up again and I could only breathe, take the drugs and supplements my doctor suggested, wait out a few months and then see it had inexplicably wandered down again. Over years it gradually decreased to normal. I don’t remember when we last checked it. That era is over.

Now, with a Lyme and chronic fatigue mismash diagnosis, it is the era of the CD-57. Roughly (and opinions differ, of course), the test is intended as an objective analogue for how well I am doing. It doesn’t say what drugs should be used, or if they should be used at all; discussions of it emphasize that the doctor must use his or her clinical skills, which seems to mean adjudicate the facts and make a good guess. What it does say is itself, its number. In my case, 101.

CD-57 numbers are like bowling–higher is better. All my previous tests have been stuck at the bottom of the scale: 60, 57, 59. Maybe a 75 once, but it regressed to the mean. 101 is a significant departure from the past pattern. It’s very up.

The doctor and I both know a good sign is still a sign. It feels like a scene from Monty Python’s Holy Grail: a sign, a sign from the Lord! A sign is open to interpretation, and guarantees nothing.

Eleven years on since I first got sick, it’s almost strange to be well. I feel a certain way (mostly fatigue) and we test for something that seems relevant; my doctor returns from a conference and has learned something new to test. We get numbers back and they are indicative, suggestive, printed out on paper by what look like dot matrix printers–Eighties-era printing. We try things and I have varying reactions. I keep getting better.

Since last fall I have struggled for many other reasons, but it seems the deepest pit of illness is back in 2004 or so. Will I stay well? Will I get sick with something else? The mass media is full of contradictory, unclear and worrying news of genetic tests and gene markers and PSA and people don’t know what to pay for, what to do. What would we pay for a clear and unambiguous test?

A test like that was the promise of the Twentieth Century, of Science. With our computers we would at last fulfill the Enlightenment’s promise, our measurements so precise and multitudinous we would know the time and place of everything. We knew how it would work from any science fiction story with a Computer: just ask what you want to know, wait to the sound of machine rattle, and the answer pops out.

We didn’t buy those rinky-dink “home computers” in the Seventies and Eighties to finally organize our recipes. They were the future come at last. Somehow. Kids understood how it worked.

The kids are now in their forties, and 2013 has no flying cars or cities on the Moon. People worry about cancer instead of AIDS. We go to doctors and underneath their calm and talk of options we can feel their shrugs.

Computers are everywhere, and like everything wrested from the gods, are a mixed bag. Burke’s dream has been realized: everybody can build their own world, but they aren’t much different than the old–driven by advertising, full of noise, now far too many to visit even the tiniest fraction. (Who reads this blog? Hello?) The government can supposedly listen in on a majority of phone calls, and read a significant proportion of all email. Target has computers measuring everything about anyone who buys anything in its stores, with the result that Target knows the teenage daughter is pregnant before her father does. Big Brother is here, but mostly to ensure our brand loyalty: Brand Target or Brand Us aren’t that different. But ultimately it’s as silly as Adams realized: it’s called junk mail for a reason.

Somewhere, in all of this, is my 101. What does it really mean? It’s not a guarantee. Nobody will send me coupons based on it. It will sit in some isolated computer to be lost or forgotten or deleted because that kind of information is not kneaded for secrets. Which seems incredible: if we could apply the predictive shopping confidence of a woman being pregnant to whether someone will get sick or stay well, that seems worth paying for.

Instead, millions of forty-somethings who grew up with Atari 800s and Commodore 64s now work in labs and insurance companies and doctor’s offices, all at cross-purposes. Our computers have led us to a health care system designed by Vogons.

101 is the number Science has provided. I’m glad to have it, but like a sign from God, it doesn’t come with instructions, no matter how much we wish it did.

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