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.”