A Better Angel Page 17

  Suffer, pony, suffer!

  “What do you know about Dr. Chandra?” I ask Nancy, who is curling my hair at the nurses’ station. She has tremendous sausage curls and a variety of distinctive eyewear that she doesn’t really need. I am wearing her rhinestone-encrusted granny glasses and can see Ella Thims, another short-gut girl, in all her glorious, gruesome detail where she sits in her little red wagon by the clerk’s desk. Ella had some trouble finishing up her nether parts, and so was born without an anus, or vagina, or a colon, or most of her small intestine, and her kidneys are shaped like spirals. She’s only two, but she is on the sauce also. I’ve known her all her life.

  “He hasn’t rotated here much. He’s pretty quiet. And pretty nice. I’ve never had a problem with him.”

  “Have you ever thought someone was interesting. Someone you barely knew, just interesting, in a way?”

  “Do you like him? You like him, don’t you?”

  “Just interesting. Like a homeless person with really great shoes. Or a dog without a collar appearing in the middle of a graveyard.”

  “Sweetie, you’re not his type. I know that much about him.” She puts her hand out, flexes it swiftly at the wrist. I look blankly at her, so she does it again, and sort of sashays in place for a moment.

  “Oh.”

  “Welcome to San Francisco.” She sighs. “Anyway, you can do better than that. He’s funny-looking, and he needs to pull his pants up. Somebody should tell him that. His mother should tell him that.”

  “Write this down under chief complaint,” I had told him. “ ‘I am sick of love.’ ” He’d flipped his pen and looked at the floor. When we came to the social history, I said my birth mother was a nun who’d committed indiscretions with the parish deaf mute. And I told him about my book—the cat and the bunny and the peacock and the pony, each delightful creature afflicted with a uniquely horrible disease.

  “Do you think anyone would buy that?” he asked.

  “There’s a book that’s just about shit,” I said. “Why not one that’s just about sickness and death? Everybody poops. Everybody suffers. Everybody dies.” I even read the pony page for him, and showed him the picture.

  “It sounds a little scary,” he said, after a long moment of pen-tossing and silence. “And you’ve drawn the intestines on the outside of the body.”

  “Clowns are scary,” I told him. “And everybody loves them. And hoof dismay isn’t pretty. I’m just telling it how it is.”

  “There,” Nancy says, “you are curled!” She says it like, you are healed. Ella Thims has a mirror on her playset. I look at my hair and press the big purple button underneath the mirror. The playset honks, and Ella claps her hands. “Good luck,” Nancy adds as I scoot off on my IV pole, because I’ve got a date tonight.

  One of the bad things about not absorbing very well and being chronically malnourished your whole life long is that you turn out to be four and a half feet tall when your father is six-four, your mother is five-ten, and your sister is six feet even. But one of the good things about being four and a half feet tall is that you are light enough to ride your own IV pole, and this is a blessing when you are chained to the sauce.

  When I was five I could only ride in a straight line, and only at the pokiest speeds. Over the years I mastered the trick of steering with my feet, of turning and stopping, of moderating my speed by dragging a foot, and of spinning in tight spirals or wide loops. I take only short trips during the day, but at night I cruise as far as the research building that’s attached to, but not part of, the hospital. At three a.m. even the eggiest heads are at home asleep, and I can fly down the long halls with no one to see me or stop me except the occasional security guard, always too fat and too slow to catch me, even if they understand what I am.

  My date is with a CF-er named Wayne. He is the best-fed CF kid I have ever laid eyes on. Usually they are blond, and thin, and pale, and look like they might cough blood on you as soon as smile at you. Wayne is tan, with dark-brown hair and blue eyes, and big, with a high, wide chest. He is pretty hairy for sixteen. I caught a glimpse of his big hairy belly as I scooted past his room. On my fourth pass (I slowed each time and looked back over my shoulder at him) he called me in. We played a karate video game. I kicked his ass, then I showed him the meditation channel.

  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 doughnuts. 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 a 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 questions, 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 no camp for CF,” he said. “Camps for diabetes, for HIV, for kidney failure, for liver failure, but no CF camp. 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 doughnut 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 doughnuts 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 on one of them. Combinations change slowly in hospitals. “The intern’s never here,” I tell him as I open the door. “Heme-onc kids have a lot of problems at night.”

  Inside are a single bed, a telephone, and a poster of a kitten in distress coupled to 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 nightstand, 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 ch’intrate.

  “Can you read that?” he asks.

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

  “That’s pretty. It’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 a little closer to him in the bed while I fixed the IV. “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.

  See the zebra? She has atrocious pancreas oh! Her belly hurts her terribly—sometimes it’s like frogs are crawling in her belly, and sometimes it’s like snakes are biting her inside just below her belly button, and sometimes it’s like centipedes dancing with cleats on every one of their little feet, and sometimes it’s a pain she can’t even describe, even though all she can do, on those days, is sit around and try to think of ways to describe the pain. She must rub her belly on very particular sorts of tree to make it feel better, though it never feels very much better. Big round scabs are growing on her tongue, and every time she sneezes another big piece of her mane falls out. Her stripes have begun to go all the wrong way, and sometimes her own poop follows her, crawling on the ground or floating in the air, and calls her cruel names.

  Suffer, zebra, suffer!

  Asleep 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 goodbye.

  “Dr. Chandra,” says a voice. I know it must belong to Dr. Snood, 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. Snood 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 on my belly. Dr. Snood 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. Snood, 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. Snood, 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 goodwill 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 God’s eyes. At home I have a trunkful of God’s 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 splash in water or stacking blocks or singing along with Miss Margaret. Two wholesome Down 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 up 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 God’s 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 m
y 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?”

  See the peacock? He has crispy lung surprise. He has got an aching in his chest, and every time he tries to say something nice to someone, he only coughs. His breath stinks so much it makes everyone run away, and he tries to run away from it himself, but of course no matter where he goes, he can still smell it. Sometimes he holds his breath, just to escape it, until he passes out, but he always wakes up, even when he would rather not, and there it is, like rotten chicken, or old, old crab, or hippopotamus butt. He only feels ashamed now when he spreads out his feathers, and the only thing that gives him any relief is licking a moving tire—a very difficult thing to do.

  Suffer, peacock, suffer!

  It’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 tamale-ladies—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.