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.

Greetings from Day 4 of anti-convulsant meds.  Side effects of irritability and moodiness, in my case, are like a part of your brain being inhabited by your in-law with the nasty tongue and enough knowledge of the family cesspit to push all your buttons.  She’d be less annoying if she weren’t, at some level, right.   It’s not that the drug puts new thoughts in your head.  It takes your thoughts and sends them ten degrees south, tinged with what Anne Lamott called “Radio K-FKT”.   Last night it started playing in stereo.

Among the tracks on that playlist, inevitably, are songs about the risk of giving up loved things.   When I wrote at the end of my last message about having those wonderful wings, I was in part cribbing from a recent movie – Maleficent, starring Angelina Jolie.  It’s a retelling of Snow White from the POV of the wicked witch, who in this version is an ageing, embittered fairy who once had such magnificent wings.   She is seduced by a man who puts her into a trance and brutally saws the wings off, to bring them back as a trophy to his king.  The best scene in an otherwise mediocre movie is when Maleficent awakens from the sleep, discovers her wings reduced to stumps, and cries out in anguish.  It’s by far the best performance I’ve ever seen Angelina give.  Watching it, I couldn’t help but wonder whether she drew on the grief of her recent double mastectomy, chosen as a prophylactic against her heightened risk of cancer.

In my case, the initial changes are easy, and some are even making themselves – I seem to have naturally lost my nightly taste for wine, and I live in a wonderfully walkable city  – but some changes, if they must come, will be hard.  This week’s side effects have sent me down the path of rumination on such possible “losses.”  For example, this whole business prevented Beret and me from vacationing at the Strong family cabin on the Truckee River, where my chief pleasure is swimming against the delicious current in the lee of a great granite boulder.  It’s just as well we’re not there, because river swimming would be “not indicated” in my current state.    So tonight I resorted to a trusted anti-depressant: I walked the dog under a changing Colorado evening sky.  As I admired the clouds and mountains, my Ipod randomly served up Tracey Thorn’s Swimming:

When the hurricane dies down
And everything lies on the ground
We will see no end in sight
We will be besieged by light
Right now we are just keeping afloat
But soon we’ll be swimming
Swimming
It’s all over so let’s go on
There’s nothing left so let’s keep on
We can’t keep on so let’s keep on

There is no reason so let’s
Make our own let’s
Make our own
Let’s —

When I’ve been in places like this before, that’s pretty much what I’ve done, and what I see people around me do every day, dealing with challenges bigger than mine.  Keep swimming, even if you’re not allowed to swim.

Good news!  I have epilepsy.

The above sentence is true – both halves of it.

Let me explain.  For the past couple of years, I have been accumulating this odd little set of symptoms.  Visual auras, reminiscent of certain fondly-remembered high school recreations.   Sudden bits of vertigo, reminiscent of the aftermath of frat parties best forgotten.  Then, on June 9, after a frenetic day at work, I was walking from my office building to the garage where I park.  I recall hoofing past a sedan that was making a y-turn . . . and waking up in the ER.   In between, I am reputed to have told strangers  my name was Richard, engaged in enough muscular activity to make me sore ever since,  “foamed at the mouth” (this sounds rather werewolfish and may not be true), took some skin off my elbow, hip and scalp (this I have the road rash to prove), took an ambulance ride (this I have the BILL to prove), had a CT scan, struggled to answer questions put to me by a grumpy ER doc, and gazed into the loving, frightened eyes of my wife.   The last part is the only bit I actually remember .  I do fuzzily recall flunking the doc’s exasperated quiz.  Once he got the CT result showing I wasn’t bleeding on the brain, he gave up trying to get any sense out of me, pronounced that I was discharged,  said “the seizure was probably idiopathic,” and wished me a pleasant evening.    If I ever have the experience again, I hope I have the presence of mind to answer “That’s idiopathic” to any question put to me by emergency personnel.

So why is this good news?  Well, I guess the good news part started yesterday, when I consulted with a super-smart neurologist who gave me an answer to the small questions niggling at the back of my mind for the past 18 months, questions that after the seizure got more persistent and disturbing than even  those of the ER doc.  It’s good news that the answer to those questions is not “it’s idiopathic.”  It’s good news that the answer is a condition, not a degenerative disease, unlikely to be fatal, likely to be manageable with meds, and one that will change, but not ruin, my life.   It’s good news that I live in a time when society offers medication for this sort of thing, instead of burning one at the stake as a heretic.   It’s good news that I love so goddamn much Beret, Paige and Marcus, my wider family, a goodly proportion of you on Facebook, and this crazy life of mine, and that if the fates allow and I behave myself, I will get to live lots more of it.

When I was a kid, my favorite fantasy activity was flying. Superman-Gigantor style.  Since I awoke in the ER that night, I have indulged the vision that my seizure was one of those Narnia-like, “leave for an instant, live a lifetime”  experiences, and that the reason my shoulder blades still hurt so much is that during my excursion, I had these enormous, hawk-like wings.