What are the odds?
Among the joys of a new diagnosis is when you read one of those nuggets on the Internet, take a pill that makes you speedy, and then “go to sleep.” Consider this toothsome bedtime morsel: one in every thousand persons with epilepsy dies, “without warning and where no cause of death could be found.” There’s even a catchy acronym, “SUDEP,” which stands for “sudden unexplained death from epilepsy.” It’s 10 p.m. – sweet dreams!
By midnight, I have some mixed feelings about this. On one hand, one in a thousand — those are great odds! I mean, really, very very unlikely. In the parlor game of comparative misfortune, this is really a pretty fantastic card to draw, n’est-ce pas?
On the other hand –WTF! One in a thousand? How many risks have I taken lately that are that high? A few years ago we did a film about the “world’s most dangerous road” in Bolivia, and we felt all brave and daring in doing so. But I don’t think the risk was nearly 1/1000. Then there is the “sudden, unexplained” part. Are they saying that one in a thousand folks with epilepsy dies without warning? One of the freakiest things about the seizure I had two weeks ago is that I don’t remember it. So, could my death be that way too? No advance warning, no dramatic monologues, no pangs of regret that I didn’t spend more time in the office? No goodbyes, even to myself? I’m not looking forward to death, and I don’t expect to experience it for a long time, but I do expect to be present for the experience. When I sat with my father as he died, he knew he was dying, all right. In fact, he labored himself into death the way a mother labors her baby into life. The idea of even a remote(ish) chance that my end could come in absentia, so to speak, just flat pisses me off. Who would end a sentence, let alone their own life story, that way? It’s ungrammatical.
By 4 a.m., I realize I am getting it wrong, in two ways. Actually, three.
Number one is not exactly a picker-upper, but it’s worth remembering. People die without warning, and without knowing it, all the time. You don’t need epilepsy – just a fast-moving subway, an unlucky bullet, an aneurism, or even too sound a night’s sleep. None of us is guaranteed goodbyes – no, not even to ourselves. So suck it up, say what you need to, live how you need to, while you have the chance. No excuses.
Number two is that “odds” really don’t mean shinola when your statistical sample size is one. In the great cosmic science experiment, your life represents a single subject, undergoing a single trial. You either will (p=1), or you will not (p=0), experience a particular outcome. Case in point: in 1960s segregationist Alabama, a bunch of white kids set up a recording studio outside a town of 8,000, surrounded by cotton fields. They invite a black kid, who grew up working in those fields, to come in to record a song. Then they call up New York’s biggest record producer and play it for him over the phone. The song is “When a Man Loves a Woman,” and the singer is Percy Sledge. Pretty soon those white kids from Muscle Shoals — Rick Hall, Spooner Oldham and Funky Donny Fritts — are backing up Aretha Franklin on R-E-S-P-E-C-T. Said producer Rick Hall about his career: “I was going to make a name in the music business.”
Another data point, less famous: Beret and I are now helping out with a documentary about teenaged girls in a huge refugee camp in Uganda. Of perhaps 60,000 girls in the camp, maybe 5 go on to higher education. The rest become trapped in early marriages, sexual assault, statelessness and poverty. But the girls in our story are among 30 who study at a nearby school run by an NGO. One has applied for asylum in Australia. Another wants to be a journalist. A third got a scholarship to university in Nairobi. Their stories are full of optimism, drive, dreams.
The statistical probabilities of these outcomes are relevant to the musicologist, the doctor, the UN bureaucrat, who see many subjects and many trials. But for the patient, the player, the refugee – the self — the only operative concept is intention.
Oh, and number three. By 5 a.m., I realize I need some sleep meds that will play nicely with the other amber bottles collecting at my sink. Problem solved. I slumber.