The Worst Years of Your Life (34 page)

He is here for a tune-up—every so often the cystic fibrosis kids will get more tired than usual, or cough more, or cough differently, or a routine test of their lung function will be precipitously sucky, and they will come in for two weeks of IV antibiotics and aggressive chest physiotherapy. He is halfway through his course of tobramycin, and bored to death. We go down to the cafeteria and I watch him eat three stale donuts. I have some water and a sip of his tea. I'm never hungry when I'm on the sauce, and I am absorbing so poorly now that if I ate a steak tonight the whole cow would come leaping from my ass in the morning.

I do a little history on him, not certain why I am asking the question, and less afraid as we talk that he'll catch on that I'm playing intern. He doesn't notice, and fesses up the particulars without protest or reservation as we review his systems.

“My snot is green,” he says. “Green like that.” He points to my green toenails. He tells me that he has twin cousins who also have CF, and when they are together at family gatherings he is required to wear a mask so as not to pass on his highly resistant mucoid strain of Pseudomonas. “That's why there's not camp for CF,” he says. “Camps for diabetes, for HIV, for kidney failure, for liver failure, but no CF camps. Because we'd infect each other.” He wiggles his eyebrows then, perhaps not intentionally. “Is there a camp for people like you?” he asks.

“Probably,” I say, though I know that there is, and would have gone this past summer if I had not been banned the year before for organizing a game where we rolled a couple of syndromic kids down a hill into a soccer goal. Almost everybody loved it, and nobody got hurt.

Over Wayne's shoulder I see Dr. Chandra sit down two tables away. At the same time that Wayne lifts his last donut to his mouth, Dr. Chandra lifts a slice of pizza to his, but where Wayne nibbles like an invalid at his food, Dr. Chandra stuffs. He just pushes and pushes the pizza into his mouth. In less than a minute he's finished it. Then he gets up and shuffles past us, sucking on a bottle of water, with bits of cheese in his beard. He doesn't even notice me.

When Wayne has finished his donut I take him upstairs, past the sixth floor to the seventh. “I've never been up here,” he says.

“Heme-Onc,” I say.

“Are we going to visit someone?”

“I know a place.” It's a call room. A couple of years back an intern left his code cards in my room, and there was a list of useful door combinations in one of them. Combinations change slowly in hospitals. “The intern's never here,” I tell him as I open the door. “Heme-One kids have a lot of problems at night.”

Inside are a single bed, a telephone, and a poster of a kitten in distress coupled with an encouraging motto. I think of my dream cat, moaning and crying.

“I've never been in a call room before,” Wayne says nervously.

“Relax,” I say, pushing him toward the bed. There's barely room for both our IV poles, but after some doing we get arranged on the bed. He lies on his side at the head with his feet propped on the nightstand. I am curled up at the foot. There's dim light from a little lamp on the bed stand, enough to make out the curve of his big lips and to read the sign above the door to the hall:
LASCIATE OGNE SPERANZA, VOI CHI'INTRATE
.

“Can you read that?” he asks.

“It says, ‘I believe that children are our future.'”

“That's pretty. I'd be nice if we had some candles.” He scoots a little closer toward me. I stretch and yawn. “Are you sleepy?”

“No.”

He's quiet for a moment. He looks down at the floor, across the thin, torn bedspread. My IV starts to beep. I reprogram it. “Air in the line,” I say.

“Oh.” I have shifted closer to him in the bed while fixing the IVs. “Do you want to do something?” he asks, staring into his lap. “Maybe,” I say. I walk my hand around the bed, like a five-legged spider, in a circle, over my own arm, across my thighs, up my belly, up to the top of my head to leap off back onto the blanket. He watches, smiling less and less as it walks up the bed, up his leg, and down his pants.

A
SLEEP
in my own bed, I'm dreaming of the cat when I hear the team; the cat's moan frays and splits, and the tones unravel from each other and become their voices. I am fully awake with my eyes closed. He lifts a mangy paw, saying good-bye.

“Dr. Chandra,” says a voice. I know it must belong to Dr. Fell, the GI attending. “Tell me the three classic findings on X-ray in necrotizing enterocolitis.” They are rounding outside my room, six or seven of them, the whole GI team: Dr. Fell and my intern and the fellow and the nurse practitioners and the poor little med students. Soon they'll all come in and want to poke my belly. Dr. Fell will talk for five minutes about shit: mine, and other people's, and sometimes just the idea of shit, a Platonic ideal not extant on this earth. I know he dreams of gorgeous, perfect shit the way I dream of the cat.

Chandra speaks. He answers
free peritoneal air
and
pneumatosis
in a snap but then he is silent. I can see him perfectly with my eyes still closed: his hair all ahoo; his beady eyes staring intently at his shoes; his stethoscope twisted crooked around his neck, crushing his collar. His feet turn in, so his toes are almost touching. Upstairs with Wayne I thought of him.

Dr. Fell, too supreme a fussbudget to settle for two out of three, begins to castigate him: a doctor at your level of training should know these things; children's lives are in your two hands; you couldn't diagnose your way out of a wet paper bag; your ignorance is deadly, your ignorance can
kill.
I get out of bed, propelled by rage, angry at haughty Dr. Fell, and at hapless Dr. Chandra, and angry at myself for being this angry. Clutching my IV pole like a staff I kick open the door and scream, scaring every one of them: “Portal fucking air! Portal fucking air!” They are all silent, and some of them white-faced. I am panting, hanging now on my IV pole. I look over at Dr. Chandra. He is not panting, but his mouth has fallen open. Our eyes meet for three eternal seconds and then he looks away.

Later I take Ella Thims down to the playroom. The going is slow, because her sauce is running and my sauce is running, so it takes some coordination to push my pole and pull her wagon while keeping her own pole, which trails behind her wagon like a dinghy, from drifting too far left or right. She lies on her back with her legs in the air, grabbing and releasing her feet, and turning her head to say hello to everyone she sees. In the hall we pass nurses and med students and visitors and every species of doctor, attendings and fellows and residents and interns, but not my intern. Everyone smiles and waves at Ella, or stoops or squats to pet her or smile closer to her face. They nod at me, and don't look at all at my face. I look back at her, knowing her fate. “Enjoy it while you have it, honey,” I say to her, because I know how quickly one exhausts one's cuteness in a place like this. Our cuteness has to work very hard here. It must extend itself to cover horrors—ostomies and scars and flipper-hands and harelips and agenesis of the eyeballs—and it rises to every miserable occasion of the sick body. Ella's strange puffy face is covered, her yellow eyes are covered, her bald spot is covered, her extra fingers are covered, her ostomies are covered, and the bitter, nose-tickling odor of urine that rises from her always is covered by the tremendous faculty of cuteness generated from some organ deep within her. Watching faces I can see how it's working for her, and how it's stopped working for me. Your organ fails, at some point—it fails for everybody, but for people like us it fails faster, having more to cover than just the natural ugliness of body and soul. One day you are more repulsive than attractive and the good will of strangers is lost forever.

It's a small loss. Still, I miss it sometimes, like now, walking down the hall and remembering riding down this same hall ten years ago on my Big Wheel. Strangers would stop me for speeding and cite me with a hug. I can remember their faces, earnest and open and unassuming, and I wonder now if I ever met someone like that where I could go with them, after such a blank beginning. Something in the way that Dr. Chandra looks at me has that. And the Child Life people look at you that way, too. But they have all been trained in graduate school not to notice the extra head, or the smell, or the missing nose, or to love these things, professionally.

In the playroom I turn Ella over to Margaret and go sit on the floor in a patch of sun near the door to the deck. The morning activity, for those of us old enough or coordinated enough to manage it, is the weaving of gods' eyes. At home I have a trunkful of gods' eyes and potholders and terra-cotta sculptures the size of your hand, such a collection of crafts that you might think I'd spent my whole life in camp. I wind and unwind the yarn, making and then unmaking, because I don't want to add anything new to the collection. I watch Ella playing at a water trough, dipping a little red bucket and pouring it over the paddles of a waterwheel. It's a new toy. There are always new toys, every time I come, and the room is kept pretty and inviting, repainted and recarpeted in less time than some people wait to get a haircut, because some new wealthy person has taken an interest in it. The whole floor is like that, except where there are pockets of plain beige hospital nastiness here and there, places that have escaped the attentions of the rich. The nicest rooms are those that once were occupied by a privileged child with a fatal syndrome.

I pass almost a whole hour like this. Boredom can be a problem for anybody here, but I am never bored watching my gaunt yellow peers splashing in water or stacking blocks or singing along with Miss Margaret. Two wholesome Down's syndrome twins—Dolores and Delilah Cutty, who both have leukemia and are often in for chemo at the same time I am in for the sauce—are having a somersault race across the carpet. A boy named Arthur who has Crouzon's syndrome—the bones of his skull have fused together too early—is playing Chutes and Ladders with a girl afflicted with Panda syndrome. Every time he gets to make a move, he cackles wildly. It makes his eyes bulge out of his head. Sometimes they pop out—then you're supposed to catch them with a piece of sterile gauze and push them back in.

Margaret comes over, after three or four glances in my direction, noticing that my hands have been idle. Child Life specialists abhor idle hands, though there was one here a few years ago, named Eldora, who encouraged meditation and tried to teach us Yoga poses. She did not last long. Margaret crouches down—they are great crouchers, having learned that children like to be addressed at eye level—and, seeing my gods' eye half-finished and my yarn tangled and trailing, asks if I have any questions about the process.

In fact I do. How do your guts turn against you, and your insides become your enemy? How can Arthur have such a big head and not be a super-genius? How can he laugh so loud when tomorrow he'll go back to surgery again to have his face artfully broken by the clever hands of well-intentioned sadists? How can someone so unattractive, so unavailable, so shlumpy, so low-panted, so pitiable, keep rising up, a giant in my thoughts? All these questions and others run through my head, so it takes me a while to answer, but she is patient. Finally a question comes that seems safe to ask. “How do you make someone not gay?”

I
T'S NOT SAFE
to confide in people here. Even when they aren't prying—and they do pry—it's better to be silent or to lie than to confide. They'll ask when you had your first period, or your first sex, if you are happy at home, what drugs you've done, if you wish you were thinner and prettier, or that your hair was shiny. And you may tell them about your terrible cramps, or your distressing habit of having compulsive sex with homeless men and women in Golden Gate Park, or how you can't help but sniff a little bleach every morning when you wake up, or complain that you are fat and your hair always looks as if it had just been rinsed with drool. And they'll say, I'll help you with that bleach habit that has debilitated you separately but equally from your physical illness, that dreadful habit that's keeping you from becoming more perfectly who you are. Or they may offer to teach you how the homeless are to be shunned and not fellated, or promise to wash your hair with the very shampoo of the gods. But they come and go, these interns and residents and attendings, nurses and Child Life specialists and social workers and itinerant tamaleladies—only you and the hospital and the illness are constant. The interns change every month, and if you gave yourself to each of them they'd use you up as surely as an entire high-school football team would use up their dreamiest cheerleading slut, and you'd be left like her, compelled by your history to lie down under the next moron to come along.