Arna Hemenway - Elegy on Kinderklavier

And who could ask for more chance, for life to prove itself more the curiosity that one in one’s youth always secretly hoped it will be?

Arbitrary a point of experience it might be, in the scheme of things, but here persists that night, reaching out for me again. It’s nostalgia that holds me at such a delicate remove from that feeling, that night in the ruined theater. It is this age of nostalgia — maybe the only true age — which casts the sense that the episode is not yet completed, that I may, in my present or future, be somehow reclaimed.

How does one tell oneself such a story, if not to pretend a beginning? It is inescapable: her body, organizing principle.

It is at least true that what jetsam of memory left unruined by what came after is ensouled by her body, particularly this pale bough of a body in her youth.

“Well, don’t you just hate people who come into movies late?” she said, when the reel was done. “You’re not off to a very good start.”

•

That night she took me to her apartment. It was in a nice complex, built up just on the edge of campus in that bright, blocky way that often makes student apartment buildings indistinguishable from prisons.

As we took the first few steps into her apartment, I looked around. The entire apartment was empty — not a stick of furniture, nor decoration. When I turned my face to Charlie’s I remember the look on her face. It seemed such a vulnerable, honest expression — an ingenuous shame.

It turned out she spent all her money on rent, knowing she’d be able to afford nothing else, just to claim a space in this upscale complex. It turned out, as we sat on the carpeted floor Indian-style, like little kids, that she spent half the night in the old auditorium to minimize her own heating bill, which she could barely make. In the fridge there was nothing but a magnum of vodka and a bag of thawing corn, the former of which she retrieved.

Later, when we finally stood next to her surprisingly ornate bed (“moving day dumpster dive”) I moved to kiss her. With a graceful motion, she locked my face into a tight hug, pressed side by side to hers, her grasp strong. I blushed.

“I’m nervous, OK?” she said.

“ You’re nervous?” I said, her soft, anxious breath in my ear.

To what end these sentimentalisms? To what fire go these uncorrupted bits of memory? I suppose Haim was there, even then, mixed up in all of it, our little homunculus observer, energies still coiled in a quiet, patient ovum inside of her, years away from his birth. He will not even live long enough, it occurs to me now, to posses it as his own story, privately recalled.

But that night I looked down at Charlie under me, her leg bent slightly to the side, us both moving, her eyes glued downwards to where we intersected, mouth and brow formed into (mysterious to me, even now) surprise, and I remember the way the air seemed to crackle with a kind of ambient electric static as I looked down at her, as I watched her body as it moved and writhed and squirmed, unbearably sensate, alive.

•

Let me be clear about what kind of world we now find ourselves in: Haim’s stretch marks have opened. Haim’s stretch marks have opened, meaning that the long-term use of the steroid meant to control the swelling around the glioma in his brain has caused his skin to thin out from the inside, forming open wounds all over his stomach, back, and thighs.

The steroid is also what causes him to always be hungry, and to have gained tremendous amounts of weight (thus the stretch marks, thus the open wounds which, because of his chemotherapy, refuse even the basic bodily dignity of closing).

I can’t say what this small detail of his medical treatment has done to him. I can’t tell you what it is the first time you don’t recognize your own son.

Before his diagnosis Haim was a small child, skinny but also short for a seven-year-old. We have a picture of him getting ready to go to Hebrew school one Sunday where he’s wearing only a new polo shirt and underwear, and it almost looks like an optical illusion, the way the shoulders of the shirt fit him perfectly but the collar, even buttoned to the top, hangs off his neck and the rest of the material billows down over his thighs. For boys that age, their size balances out their novel, baffling personalities (their features starting to resolve and solidify into what you think, for the first time, they might look like when they’re men). This reins in the slightly terrifying suspicion that they’re really adults-in-miniature, that you’ve failed at protecting them, at preserving that unknowing age when their love for you is still focused, can still be seen, you are convinced, in everything they say or do.

And so at first the sickness is an insult because of his size, because it seems impossible, no matter what the pediatric oncologists say, that a brain so small and malleable could harbor anything of real magnitude or strength, anything that could survive the vast powers that twenty-first-century medicine might bring to bear on it, but also simply because it seems unclear, exactly, what a human being so physically minute might possibly do to defend himself. It’s only later, in this second year of treatment, when the steroids begin to unmake Haim’s body, that I begin to understand the real insult, the way in which he would be taken from me even as he lived.

It is an indignity to require of yourself a certain kind of double vision in order to see your son when he is lying there in front of you. To see him with the grace required of an aging lover; to see the once-body inside the thing you are presented with now — to see past and present at once, and have the latter not ruin the former.

First, Haim’s face billowed out, his two cheeks like twin sails catching a sagging wind. The rest of his body soon followed, inflating almost cartoonishly. There were the steroids, but also the fact of his decreasing mobility (not even, at first, due to the left-side weakness caused by the glioma, but the pain of several secondary infections — UTIs from all the catheters, kidney stones from some of the medicines, and so on) until he could not (and still cannot) move without a wheelchair. Strangely, even the size of his head seemed to change until it appeared, as it does now, vaguely monstrous, disproportionate and swollen.

The changes to his face are the most insulting fact to Haim himself. There used to be a mirror on the wall to the left of his bed and when he had visitors he’d stare past them as they spoke, focusing on a spot slightly above their own heads, where the specter of his ruined features stared back, but after a while he made the nurses take it down. He’s right that it is his face, or, more accurately, his eyes, that make the dissociation so striking, so final. His bulbous cheeks and neck-fat change, helplessly, his gaze, give it the slightly addled strabismus of the morbidly obese, and for whatever reason this is a look so antithetical to the six-year-old waif whom I last knew without a glioma on his brain stem that the two seem, most of the time, irreconcilable.

I think it is his face that Charlie could never quite recoup either. I remember watching her take him in, after the change had occurred, when she returned from the holiday. (We called it “the holiday” because at one point during those long, desperate months of her absence, Haim and I watched Roman Holiday together on the digital projector he and I had rigged up in his room. The room is of a size and orientation where it only really worked if Haim held the digital machine on his stomach as he reclined and the thrown picture was allowed to take up most of the wall he faced, including the door. He picked the movie out himself, out of the midst of another of his unknowable seas of contemplation. Unlike all of the other kids on the ward, Haim never wants to watch movies. We’ve only ever used the projector for two things, that screening being one of them. I don’t know if someone told him about the movie, or if he clued in just from the title. It seemed clear at first why he wanted to watch it, the parallels to his mother too apparent, but then halfway through he asked me to turn the sound off and we just sat with the flickering picture, Audrey Hepburn and Gregory Peck’s cavorting turning vaguely sad, in silence.)