Elegy on Kinderklavier (26 page)

So it is, as the resident explained, actually SIADH that caused the emergency today, that made my son fail to recognize me. SIADH, or Syndrome of Inappropriate Anti-Diuretic Hormone Hypersecretion. They don't use the real names of these things because they're ridiculous.
Inappropriate hormone secretion, or, as it's otherwise known, ninth grade,
I wanted to say to cheer Haim up, but he's unconscious, and it's a lame joke that he will never be old enough to really get anyway.

There's not much to do now but think about the words, as if breaking them down or playing a kind of sleep-deprived free association might change them into something more logical, something
one might understand. In the wake of his morning of medical activity, Haim is now hooked up to an EEG to monitor brain activity, a ventilator, and a catheter, and has an arterial line in his left wrist and a central line in the right side of his groin. He has been given one medicine to seep fluids from his tissues into his veins, and another to make his body rid itself of the excessive fluid through urination. The body, even when it is more plastic tube and chemical molecule than flesh, persists in being a body. Haim is under sedation now, but doing better, and is scheduled, if everything continues to improve, to be extubated tomorrow. I already have a Popsicle ready for him for after they do it, have already stashed it in a small fridge in an empty room two rooms down. It's purple.

Of course, no one tells you how to feel about this, how much this minor crisis signals our proximity to the larger one, the crisis that is not a crisis, the end. I try to call the number that, through several relaying connections, is supposed to connect me to Charlie, but it only rings again, as it has all day, to no answer.

Diffuse Intrinsic Pontine Glioma. Imagine a morning fog spreading through a dense forest, insinuating itself until its opacity is the very space between the trees, until its wispy presence exists even in the delicate distance between the needles of two overlapping fronds. It is a betrayal of one's own flesh, growing as it does out of the glial cells, which are the ones in the brain that are supposed to protect your neurons. It is inoperable.

The first time we almost lost Haim (to a bad sepsis that developed around the medical port that had been implanted in his chest) I was still stuck on those words, “pontine” in particular. You read up on everything, at least until the medical labyrinth loses you. You do what you can. The pons is tightly held in the brain's fist, encased neatly, maddeningly, by the meat of the cerebellum, midbrain, and medulla. It deals with sleep, breathing, swallowing, bladder control,
hearing, taste, eye movement, and facial expression/sensation, among other things. The frontal lobe may be the seat of abstract consciousness, but it is the pons that is the seat of the bodily existence, the brain's brain. Pons means “bridge” in Latin, and its matter bridges many things, like the signals for voluntary action and the motor cortex that allows one to act in the world, or the act of (in the sad, unintentional poetry of the medical textbooks) inspiration and expiration. The pons is there right from the beginning, in the folding of the tube that will be the fetal brain, gathering at seven weeks, just about the time you find it safe enough to tell the world that you are pregnant.

At the time, I could only think of the Ponte Vecchio, which I once saw as a child. It's impossible to separate what I knew that first time, in the long hours sitting alone by Haim's bedside in the PICU—not used to the kind of low-grade panic that never quite recedes and compulsively dialing Charlie's cellphone number to no avail--from what I know now, from all the subsequent Googling, the madcap late-night efforts to draw the connections.
A tumor on the pons, full name pons Varolii after Costanzo Varolio, the 16
^th
-century Italian who discovered it and who worked and died in the country of the Ponte Vecchio, where four hundred years later I stood as a boy on a dreary, wet fall night (my own pons at that moment safely coming to the last stages of its development and yet even then containing the very DNA that would recombine with Charlie's, adding the future groundwork for one tiny disastrous mutation) thinking only of how the bridge's many vibrantly golden lights leaping in the water made it look like the whole river was on fire
. This all in order to somehow, someway understand even a little bit of what it was that was being visited upon my little son.

That was the night the holiday started, that night of the sepsis scare. It was the first of September, Haim had only been sick for
about four months, and everything still seemed manageable. Charlie and I spent all day every day at the hospital with Haim, taking turns nights with one of us sleeping on the small foldable cot in his room and the other making the tired walk back to the flat in the cool dark.

A lot of the other families on the oncology ward could only have one parent there at a time, while the other was forced to spend the day working and visiting for a few hours before bedtime and on weekends. By this time, though, Charlie's art shows (the reason we moved to England in the first place) had made so much money that neither of us had to work.

First grade, and Haim being gone most of the day for the first time, had been hard on both of us. We took Haim for little adventures after school, catching a train and getting as far out from the city as we could without coming back too late. Once, we went to a Zen garden way out in the country and walked around for hours, Haim pointing things out and naming them quietly, insisting that his made-up name for each tree or stone was correct, and we tried not to disturb the few other tourists with our laughter. On the ride back in, Haim fell asleep on Charlie, who fell asleep on me, and I stayed up to watch the dark farmland give way to the concrete and brick of London. The train was empty except for us and I remember even its hum of speed sounded pleased, contented.

So in some way during that first era of Haim's sickness the days felt almost OK, like we'd gotten our little boy back somehow, like he might never get any older, might never outgrow us or this trusting age. We started out in the hospital the way that all the families on the terminal end of the oncology ward start out: the diagnosis is bad but your child is alive, is right now alive, and though in a vague, abstract way you understand the fear, here is your little boy, begging you to play futsal on the hospital's miniature enclosed court, and how bad could any world be when he is running toward the goal, his head (no
matter what grows inside it) tilted back to watch the ball arc through the air toward him, his tawny hair, half stuck to his forehead with sweat, catching the long golden sunlight of late afternoon. This is, of course, before his eyes begin to drift independently, before his left-side weakness becomes so great he cannot make a fist, before his speech so often dips into a slurring, coughing Hebraic stammer that when he does manage to get a clear sentence out it rings in the air as if someone else has said it. Before his body, bloated and ravaged and drained and filled with medicine, is so weak that he cannot stand to kick a ball, even if he ever showed enough interest in the world again to want to. This was before all that, when he was still recognizable, only a boy, a miniature bodily vessel brimming with the discovery of each day.

The sepsis emergency was the end of all that. It came on so quickly and completely that the doctor in the PICU said that he'd thought they'd sent Haim there to expire, and was confused when he found no Do Not Resuscitate order.

I wasn't there when the crisis started, because it was Charlie's night to stay in the room. She'd paced the room all night as Haim deteriorated, torn over whether or not to wake the doctor who was overseeing treatment, or to bother the nurse, who was overworked at the end of a double shift, and worrying about being a “problem parent,” trying to decide if it was all in her head or if this was really happening. This is what I imagine. What I know is that Charlie was alone with him through the night and there when he coded, and there in the PICU when he coded again. What I know is that I got a phone call at four a.m. from Charlie saying that I needed to get to the hospital right away, that Haim was dying. I don't know if she waited somewhere to make sure I got there in time before leaving. I don't know where she was calling from. The last time any of the doctors or nurses saw her, a Patient Care Liaison was putting the DNR form in her hands. When the doctor came to talk it over, she was gone.

And so the holiday began, though we didn't call it that until a few months in, when Haim wanted us to watch that movie, and I didn't really understand until a few days after Haim recovered, until I sent for the mothers (both of whom had, since we first moved to England, been clamoring to be allowed to visit together) and went to the police station to report Charlie missing. The report took a long time and the officer seemed to grow increasingly confused. He left and came back nearly an hour later with his supervisor, an older, red-faced man who patiently explained to me that their passport records showed that Charlie had left the country. He seemed sorry to have to tell me this, to have to reveal to the clueless husband his loss, and we sat there for a minute in silence. “Is there anything else I can do for you?” the man said sadly, in a way that seemed full of his disappointment at what this life had turned out to be.

We got the first video a month later. To be honest, I was not all that surprised that Charlie had fled. Some part of me knew it when I came in that morning and saw Haim in the PICU, alone, unconscious. Seeing him like that, almost comically undersized amidst all the machines and screens and even the scaled-down hospital bed, was like getting punched in the stomach. Nothing could have pulled her away from him when he was like that—no abduction, no accident—except volition. I was told at one point a nurse was on top of Haim, straddling him; she did a compression too hard and one of his ribs broke, and I often wonder if it was this single muffled snap of sound that brought Charlie out of it, that propelled her out of the building in shock, against what should have been all her instincts, and down the streets (perhaps even passing me, without either of us knowing it?) and eventually to her suitcases and the airport.
I have seen the gaping maw of the world
, I remember her once reciting to me when we were still in college,
and am fit no longer for heaven or hell.
And so I wasn't terribly surprised when we got the video either.

The video was a short clip, about twenty seconds long. It arrived on my phone from Charlie's email address, and I stared at it for a long time before opening it. The body of the message was blank. The attached clip was taken from a handheld video camera and shook slightly. There was the glossy square of a picture, a postcard being held up to the lens. It showed a photograph of the palace at Versailles. The camera then panned up from the postcard to the actual building itself in the distance, roughly in the same scale as the picture. There was the distant sound of someone's laughter. When the camera panned back down, the postcard had been flipped over. On it there was writing in thick black marker. DO YOU KNOW, it said, THAT I LOVE YOU SO MUCH?

For the first few days she was gone, before I'd made the police report, I'd refused to look at our credit card charges. I believed that if I didn't, she would come back. That the act of not looking would make it impossible, in some Schrödinger's cat kind of way, for there to be charges from the airport, from foreign ATMs. When the police captain eventually told me the truth, that she was gone, not even in the same country, I felt that kind of magical thinking disappear from me forever. The same day the video arrived, I got a call from our bank inquiring about some suspicious charges and asking if I happened to be on a trip—I could have stopped it all right then, explained that I needed to freeze our accounts for legal reasons, settled something between us then, but I didn't. I didn't say anything, except to tell the man that my wife was traveling, and I wanted to be sure she had everything she needed.

Do you know, I thought, that I love you so much. What does that even mean.

Charlie would have been aware of the pithy irony of it, would have known the mixture of insult and hollow sentimentalism any
man in my position would be forced to take it as, would have known all this, and sent it anyway.

Of course, I spent the days as Haim came back into life searching my memory for clues. As more clips came in especially, one every two or so weeks. There was one from a Portuguese lighthouse, the camera finding DO YOU KNOW in rickety letters of scrawled graffiti on its interior stairwell, then THAT carved into the door with a pen, then I LOVE YOU, in girly script near the base of the recreated torch light, then SO MUCH at the end of a sentence in fat black marker by the stairs, the beginning of which, I could just make out, was DRU FUCKS BITCHES. How long did she have to look, I thought when I watched it, to find all of the words in English?

“Don't you know that I love you?” Charlie used to cry when we were younger, when we still had dramatic arguments that so exhausted us both that by the end we'd just be leaning into one another, and she'd be lightly beating my chest.

The holiday lasted all the way through the fall. As it went on I kept track of her with the credit card bill online, going back and forth between the electronic statement and Google's satellite search function. But you can't make a real path out of the random constellation of cashpoints, of obscure historical sites' gift shops and train stations. At any moment while I sat there in Haim's room late into the night, while he slept and I bent over the glow of my computer to save him from waking, Charlie could've been headed in any direction, could be on any train streaming through the Nordic or German or Russian or Spanish countryside, or in any room of a cut-rate left-bank flat, could be in the company of any man, any woman, any lover or friend or fan or critic of hers from the art world, but certainly not in the company of any child, certainly changing train compartments if one arrived, oblivious, in the company of a traveler. It didn't mean anything, really, to follow her.