Elegy on Kinderklavier (24 page)

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.)

When Charlie entered the room that time after her return, I watched her stop short a step inside the door. She didn't look at me, and didn't say anything. Instead, she gathered herself and went to Haim slowly. In his fitful sleep he had kicked off his blanket, and she started with his leg, the fat beneath bulging out in rolls. She put her hand out as if to gently touch his body, allowing her fingers instead to hover carefully a few millimeters above. It was like she was, piece by piece, retaking his body from the distortion of his sickness, reaffixing the original in the system of vision she seemed to understand would now be required of her. First was the leg, then the sides with the violent stretch marks, then the arm.

It reminded me of the way she used to do more or less the same thing when he was a newborn, the way she spent hours gently feeling and moving his tiny legs and arms, which had seemed to be almost all fat and no bone then, the way he let her, looking in confusion at her hands. Now, when she got to his face, she stopped.

If I am to be brutally honest, I admit to taking some pleasure in her difficulty, her struggle in that moment. I wanted him to be foreign to her in the wake of her desertion, unrecognizable. For Charlie, for lack of better words, to understand that he was now more mine than hers.

I also wanted her to see what was the cruelest bodily insult of all, which was that instead of the wan, ravaged, rail-thin body of the child with cancer nearing death, we had been given the opposite: a robust, bloated, outsized child, an embarrassment of flesh. I wanted her to get that we would not even have the small mercy of watching our own kid live and fade; that, instead, we would only have the queer neutrality of watching this Other, this boy whom some persons else had
allowed to grow so fat, to become so lost in his own body. Of not even being able to recognize him, really.

Because, of course it's true that you can't see him within that body. I had to admit that, even then, watching Charlie staring down into his changed face. You can't see him as he once was, you can't see and love the passage of the years, not really, if you're being plainly honest. You see only what's before you. The foreign body, the sickness. It's impossible to see what you've already lost.

She stood beside his hospital bed, stooped over him for a long time. Eventually she closed her eyes and put her hand lightly over his face, touching it like a blind person. I understood then that things would not go back to their erratic-but-more-manageable normal with her. That her holiday was not the single act of brinksmanship she needed to enact with herself in order to bring herself back to us. Haim had entered the hospital as one boy, with one body, and she had left that child, not this one. To her, he was simply not there to return to.

Haim had to have been awake by then, had to have felt her hand there on his face, but he refused to open his eyes until a long time after she was gone.

Nighttime here, especially on Sundays, has its own kind of timelessness. It's winter now, so the light goes quickly, and by seven o'clock it is so dark through the windows you can't even see the outlines of the mast tips at Cadogan Pier needling the sky. Eventually it is so dark that the windows reverse themselves and only show the long corridors they face, giving the shapeless dark beyond them the false depth of the hallway's lights. It's late now. Sundays are the hardest nights to get through.

The day has been quiet—they try to schedule all the kids' therapies so that they feel like they have a real weekend, can recover a little bit—and the only thing Haim has had to do today is suffer a
dressing change for the stretch marks. These re-dressings used to be so traumatic that they couldn't do them without sedation, but Haim eventually chose to refuse the anesthetic. This amount of pain seems to be interesting to him, even if he is sick from it afterward. Today he watched as he usually does, looking down at where the “wound team” worked: curious, wincing, not really breathing. They've had to switch the dressings to non-adhesive foam pads because of “skin breakdown,” meaning they had to stop pulling off the gauzes that were taped to the skin because the skin would come off with them. Nobody says anything, but there is a finality to all this. The nurses with their hyper-focus on Haim's wound care. Three failed “avenues of therapy” for the pontine glioma and we're left slathering onto his body something called MediHoney. Two different Phase II clinical cancer trials (one that was supposed to recognize and block the chemical signals that lead to the generation of new blood vessels in the tumor, and one that was supposed to damage DNA at certain guanine locations so as to trigger death of the tumor cells) and months of targeted radiation/chemotherapy later, we are using honey—actual honey—that bees make from a certain tree in New Zealand to hopefully give us a few more weeks.

I come back to the room from a coffee run in the deserted cafeteria and Haim is gone. I find him a floor down, in the pediatric intensive care unit. The lone nurse at the duty station gives me a sad little smile as I pass, as if to say she's sorry.

Haim has been back and forth between here and the pediatric oncology ward so often that everyone knows us. The only real regulars in the PICU are from our ward upstairs; most everyone else on the PICU floor is already close to the end of their story, happy or sad, and, one way or the other, doesn't return.

Haim met Ava on his first return from the PICU, when they'd both gotten C. diff after starting chemo. They were each in contact
isolation rooms which were situated next to each other at the end of the ward. The bathrooms, which they both occupied a lot, had extremely thin walls, and at some point they realized they could hear each other. Dozing beside Haim's bed I would hear their tiny voices talking for hours as they each waited out the diarrhea, the tinny laughter echoing strangely, always sounding so surprised. Each time the IV team came to access their ports, the nurses moving back and forth in the lock between the two rooms, Haim and Ava craned their necks, trying to catch a glimpse of one another when the doors opened, and sometimes waved. Ava got cleared to leave contact isolation first and Haim moved into her room. She'd spent a lot of time writing random phrases and words in dry-board marker on the large windows that looked outside. Her handwriting was rounded and girlish and after she was gone, Haim changed her letters into numbers, solving the complicated equations idly against the furrowed clouds.

Ava, who has acute lymphoblastic leukemia, is not doing very well. Haim asks for updates about her every week and I usually tell him whatever the nurses tell me when I pause at their station. He has his own information-gathering services, I guess, because lately I've just told him I'm not sure. He's not really allowed down in the PICU, but he knows this and usually goes at night, when the nurses are too tired or defeated to stop him from wheeling his chair along to Ava's room. I nod to Ava's mother as I pass her in the lounge, but she is sitting forward, perfectly still, elbows on her knees and face completely covered with her hands.

I don't disturb Haim. I lean against the wall in the hallway and watch through the doorframe. The only light on is a long, tubular fluorescent one above Ava's bed. She is lying flat on her back, beset by the Lilliputian tubes, wires, and monitors. Her mouth is taken up by the breathing tube, but she is looking up into Haim's face with her sharp, clear blue eyes, her small brow rising, steepled in what seems
like fear. I don't know if she recognizes him. It probably won't be long now.

A man has places in his heart which do not yet exist, and into them enters suffering in order that they may have existence—I can never remember who wrote that.

Haim strokes the girl's white-blond hair, so light a color that when it miraculously remained through round after round of chemotherapy it seemed providential, a gift. Now, though, I can see it coming off in Haim's hand like spent animal fur, as he does his best to pretend that it's not, and continues his smooth stroking in the imperfect quiet.

•

There is a time in the beginning of a marriage when your wife's body is still a discovery, when—at least if you were married young—the changes you notice on certain nights as her flesh begins its shift to the denser, solid tone of mid-range adulthood are to you still a delight, something new to learn and take pleasure in. This is almost evolutionary, you might understand later, after the birth of your first child, a graceful biological swing to the kind of ruddy corporeality that can best protect and deliver a pregnancy, but there is a period when her body is not yet on this spectrum, is still only made up of the surprise of a cupped buttock or thigh, a new fullness in your hands in the dark.