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Being Human: Readings from the President's Council on Bioethics

Chapter 8: Vulnerability and Suffering
Introduction

Readings in this chapter explore the most dreaded of experiences: suffering. Why do we suffer? Why should we? Is there anything to be said on its behalf?

Human beings are not the only creatures vulnerable to suffering. Yet although many animals can and do suffer, we are perhaps the only ones who suffer for the many reasons we do, and in our special way. Because no other creatures are capable of such complex awareness of suffering, our anguish no doubt has nuances and a poignance unmatched in the animal kingdom.

Yet human pain, while possibly more frequent and intense than animals', is also privileged in a way that that of animals never can be: Our suffering, and ours alone, may perhaps be redeemed. There is nothing to be gained for the animal, ever, from the bite of the trap on its leg (perhaps it is this that makes such spectacles so painful to witness). The same cannot always be said for a human being enduring physical torture, much as we deplore torture and strive to eliminate its practice. Nor need suffering be wrongly inflicted to offer redemptive possibilities. As the readings in this chapter illustrate, natural illnesses are also capable of elevating those they afflict, and those who love the afflicted, as well.

The relief of human suffering is one of the earliest and most cherished goals of science, especially medical science. No one can deny the importance of this undertaking and no one can fail to applaud, either, the extraordinary strides science and medicine have made. But does all human suffering call imperatively for a cure? The readings below may leave reason to wonder whether eliminating suffering would be wholly desirable. A life entirely free of suffering would be pleasanter, but would it be still be human? Is our vulnerability essential to our human identities and our human dignity?

We begin with perhaps the most famous and enigmatic sufferer in literature, the biblical Job, whose story, excerpted below, invites us to ponder both the meaning of suffering and how it is to be borne. We move to an excerpt from Homer's Iliad, where we see a man who is suffering from rage, grief, and guilt find peace after an appeal from the father of his vanquished enemy. Next, an excerpt from William Shakespeare's King Lear shows us the suffering of majestic old age. Poet W. H. Auden, in "Musée des Beaux Arts," then attempts to locate the "human position" of suffering, and finds it in everyday life.

The following pair of readings-two excerpts from Mary Webb's Precious Bane, and "On Deformity," by Francis Bacon-consider how suffering affects the character of the sufferer. Their conclusions contrast with each other.

Our last three readings present us with the hardest case to endure: sick and suffering children. The first two-"Witness," by Richard Selzer, and "People Like That Are the Only People Here," by Lorrie Moore-look at the effects of this suffering on those who love and care for afflicted children. Finally, in selected passages from her nonfiction essay "Introduction to a Memoir of Mary Ann," American writer Flannery O'Connor considers how the suffering of innocents is viewed in modern times: no longer through the lens of faith, which she describes as the "unsentimental eye of acceptance," but with "tenderness," a change, O'Connor argues, that has had dire consequences.

***

People Like That Are the Only People Here: Canonical Babblings in Peed Onk

by Lorrie Moore

In this short story, a proudly countercultural mother learns that her baby has a malignant tumor. She is staggered to discover, abruptly and horribly, that disaster and uncertainty can strike out of nowhere.

The mother, who is a writer, must ponder her helplessness before her unknown fate. She must learn how she is to protect her child, despite all that she is not given to know. As she and her husband see their son from diagnosis, to surgery, to discharge from the hospital, she is also forced to confront newly-revealed similarities between herself and "people like that"-others she had always considered very different.

After the mother and the husband learn that their baby has cancer, the mother tries to bargain with an unseen power for a guarantee for her child. An unbeliever, she imagines herself bargaining with the manager of a department store. In a moment of insight, she imagines the manager telling her that "What makes humans human is precisely that they do not know the future." What's more, "life's efforts" cannot produce stories if there it is no mystery as to how those efforts will turn out. The mother therefore realizes that the vulnerability with which she is struggling is not only the source of her humanity, but of her art as well.

While in the Pediatric Oncology Ward ("Peed Onk"), the mother observes among the other parents a "consuming and unquestionable obligation meeting illness move for move in a giant even-steven game of chess." She listens as these parents discuss whether this is courage. One father says it isn't, because "courage requires options," but another mother points out that there is always the option of giving up.

At the end of the story the mother is offered a choice of therapies for her child. Her husband is inclined toward the better-known and more aggressive choice, but she insists upon the experimental (less-known) and more passive treatment.

How are we to understand this choice? When she refused the husband's suggestion that they "stomp" on the cancer, "beat it, smash it to death," was she "meeting illness move for move" as the other parents had? Was she accepting her vulnerability to the unknowable, as the manager counseled?

Was she "giving up?"

As the family leaves the hospital at the end of the story, the husband feels uplifted by the good wishes expressed by the other parents in the ward. He is consoled by the thought that "we're all in the same boat."

"Woman overboard!" thinks the mother to herself, rejecting membership in the "club" of parents of cancer patients.

Does the mother truly understand the nature of this membership? Why does she reject it? Her son's illness has challenged her to see the superficiality of the differences she has always perceived between herself and others. Has she really seen it, by the end of the story?

Who are "people like that," and why are they "the only people" in Peed Onk?

***

A beginning, an end: there seems to be neither. The whole thing is like a cloud that just lands and everywhere inside it is full of rain. A start: the Mother finds a blood clot in the Baby's diaper. What is the story? Who put this here? It is big and bright, with a broken khaki-colored vein in it. Over the weekend, the Baby had looked listless and spacey, clayey and grim. But today he looks fine-so what is this thing, startling against the white diaper, like a tiny mouse heart packed in snow? Perhaps it belongs to someone else. Perhaps it is something menstrual, something belonging to the Mother or to the Babysitter, something the Baby has found in a wastebasket and for his own demented baby reasons stowed away here. (Babies: they're crazy! What can you do?) In her mind, the Mother takes this away from his body and attaches it to someone else's. There. Doesn't that make more sense?

Still, she phones the clinic at the children's hospital. "Blood in the diaper," she says, and, sounding alarmed and perplexed, the woman on the other end says, "Come in now."

Such pleasingly instant service! Just say "blood." Just say "diaper." Look what you get!

In the examination room, pediatrician, nurse, head resident-all seem less alarmed and perplexed than simply perplexed. At first, stupidly, the Mother is calmed by this. But soon, besides peering and saying "Hmmmm," the pediatrician, nurse, and head resident are all drawing their mouths in, bluish and tight-morning glories sensing noon. They fold their arms across their white-coated chests, unfold them again and jot things down. They order an ultrasound. Bladder and kidneys. "Here's the card. Go downstairs; turn left."

In Radiology, the Baby stands anxiously on the table, naked against the Mother as she holds him still against her legs and waist, the Radiologist's cold scanning disc moving about the Baby's back. The Baby whimpers, looks up at the Mother. Let's get out of here, his eyes beg. Pick me up! The Radiologist stops, freezes one of the many swirls of oceanic gray, and clicks repeatedly, a single moment within the long, cavernous weather map that is the Baby's insides.

"Are you finding something?" asks the Mother. Last year, her uncle Larry had had a kidney removed for something that turned out to be benign. These imaging machines! They are like dogs, or metal detectors: they find everything, but don't know what they've found. That's where the surgeons come in. They're like the owners of the dogs. "Give me that," they say to the dog. "What the heck is that?"

"The surgeon will speak to you," says the Radiologist.

"Are you finding something?"

"The surgeon will speak to you," the Radiologist says again. "There seems to be something there, but the surgeon will talk to you about it."

"My uncle once had something on his kidney," says the Mother. "So they removed the kidney and it turned out the something was benign."

The Radiologist smiles a broad, ominous smile. "That's always the way it is," he says. "You don't know exactly what it is until it's in the bucket."

"'In the bucket,'" the Mother repeats.

The Radiologist's grin grows scarily wider-is that even possible? "That's doctor talk," he says.

"It's very appealing," says the Mother. "It's a very appealing way to talk." Swirls of bile and blood, mustard and maroon in a pail, the colors of an African flag or some exuberant salad bar: in the bucket-she imagines it all.

"The Surgeon will see you soon," he says again. He tousles the Baby's ringletty hair. "Cute kid," he says.

"Let's see now," says the Surgeon in one of his examining rooms. He has stepped in, then stepped out, then come back in again. He has crisp, frowning features, sharp bones, and a tennis-in-Bermuda tan. He crosses his blue-cottoned legs. He is wearing clogs.

The Mother knows her own face is a big white dumpling of worry. She is still wearing her long, dark parka, holding the Baby, who has pulled the hood up over her head because he always thinks it's funny to do that. Though on certain windy mornings she would like to think she could look vaguely romantic like this, like some French Lieutenant's Woman of the Prairie, in all of her saner moments she knows she doesn't. Ever. She knows she looks ridiculous-like one of those animals made out of twisted party balloons. She lowers the hood and slips one arm out of the sleeve. The Baby wants to get up and play with the light switch. He fidgets, fusses, and points.

"He's big on lights these days," explains the Mother.

"That's okay," says the Surgeon, nodding toward the light switch. "Let him play with it." The Mother goes and stands by it, and the Baby begins turning the lights off and on, off and on.

"What we have here is a Wilms' tumor," says the Surgeon, suddenly plunged into darkness. He says "tumor" as if it were the most normal thing in the world.

"Wilms'?" repeats the Mother. The room is quickly on fire again with light, then wiped dark again. Among the three of them here, there is a long silence, as if it were suddenly the middle of the night. "Is that apostrophe s or s apostrophe?" the Mother says finally. She is a writer and a teacher. Spelling can be important-perhaps even at a time like this, though she has never before been at a time like this, so there are barbarisms she could easily commit and not know.

The lights come on: the world is doused and exposed.

"S apostrophe," says the Surgeon. "I think." The lights go back out, but the Surgeon continues speaking in the dark. "A malignant tumor on the left kidney."

Wait a minute. Hold on here. The Baby is only a baby, fed on organic applesauce and soy milk-a little prince!-and he was standing so close to her during the ultrasound. How could he have this terrible thing? It must have been her kidney. A fifties kidney. A DDTkidney. The Mother clears her throat. "Is it possible it was my kidney on the scan? I mean, I've never heard of a baby with a tumor, and, frankly, I was standing very close." She would make the blood hers, the tumor hers; it would all be some treacherous, farcical mistake.

"No, that's not possible," says the Surgeon. The light goes back on.

"It's not?" says the Mother. Wait until it's in the bucket, she thinks. Don't be so sure. Do we have to wait until it's in the bucket to find out a mistake has been made?

"We will start with a radical nephrectomy," says the Surgeon, instantly thrown into darkness again. His voice comes from nowhere and everywhere at once. "And then we'll begin with chemotherapy after that. These tumors usually respond very well to chemo."

"I've never heard of a baby having chemo," the Mother says. Baby and Chemo, she thinks: they should never even appear in the same sentence together, let alone the same life. In her other life, her life before this day, she had been a believer in alternative medicine. Chemotherapy? Unthinkable. Now, suddenly, alternative medicine seems the wacko maiden aunt to the Nice Big Daddy of Conventional Treatment. How quickly the old girl faints and gives way, leaves one just standing there. Chemo? Of course: chemo! Why by all means: chemo. Absolutely! Chemo!

The Baby flicks the switch back on, and the walls reappear, big wedges of light checkered with small framed watercolors of the local lake. The Mother has begun to cry: all of life has led her here, to this moment. After this, there is no more life. There is something else, something stumbling and unlivable, something mechanical, something for robots, but not life. Life has been taken and broken, quickly, like a stick. The room goes dark again, so that the Mother can cry more freely. How can a baby's body be stolen so fast? How much can one heaven-sent and unsuspecting child endure? Why has he not been spared this inconceivable fate?

Perhaps, she thinks, she is being punished: too many baby-sitters too early on. ("Come to Mommy! Come to Mommy-Baby-sitter!" she used to say. But it was a joke!) Her life, perhaps, bore too openly the marks and wigs of deepest drag. Her unmotherly thoughts had all been noted: the panicky hope that his nap would last longer than it did; her occasional desire to kiss him passionately on the mouth (to make out with her baby!); her ongoing complaints about the very vocabulary of motherhood, how it degraded the speaker ("Is this a poopie onesie! Yes, it's a very poopie onesie!"). She had, moreover, on three occasions used the formula bottles as flower vases. She twice let the Baby's ears get fudgy with wax. A few afternoons last month, at snacktime, she placed a bowl of Cheerios on the floor for him to eat, like a dog. She let him play with the Dustbuster. Just once, before he was born, she said, "Healthy? I just want the kid to be rich." A joke, for God's sake! After he was born she announced that her life had become a daily sequence of mind-wrecking chores, the same ones over and over again, like a novel by Mrs. Camus. Another joke! These jokes will kill you! She had told too often, and with too much enjoyment, the story of how the Baby had said "Hi" to his high chair, waved at the lake waves, shouted "Goody-goody-goody" in what seemed to be a Russian accent, pointed at his eyes and said "Ice." And all that nonsensical baby talk: wasn't it a stitch? "Canonical babbling," the language experts called it. He recounted whole stories in it-totally made up, she could tell. He embroidered; he fished; he exaggerated. What a card! To friends, she spoke of his eating habits (carrots yes, tuna no). She mentioned, too much, his sidesplitting giggle. Did she have to be so boring? Did she have no consideration for others, for the intellectual demands and courtesies of human society? Would she not even attempt to be more interesting? It was a crime against the human mind not even to try.

Now her baby, for all these reasons-lack of motherly gratitude, motherly judgment, motherly proportion-will be taken away.

The room is fluorescently ablaze again. The Mother digs around in her parka pocket and comes up with a Kleenex. It is old and thin, like a mashed flower saved from a dance; she dabs it at her eyes and nose.

"The Baby won't suffer as much as you," says the Surgeon.

And who can contradict? Not the Baby, who in his Slavic Betty Boop voice can say only mama, dada, cheese, ice, bye-bye, outside, boogie-boogie, goody-goody, eddy-eddy, and car. (Who is Eddy? They have no idea.) This will not suffice to express his mortal suffering. Who can say what babies do with their agony and shock? Not they themselves. (Baby talk: isn't it a stitch?) They put it all no place anyone can really see. They are like a different race, a different species: they seem not to experience pain the way we do. Yeah, that's it: their nervous systems are not as fully formed, and they just don't experience pain the way we do. A tune to keep one humming through the war. "You'll get through it," the Surgeon says.

"How?" asks the Mother. "How does one get through it?"

"You just put your head down and go," says the Surgeon. He picks up his file folder. He is a skilled manual laborer. The tricky emotional stuff is not to his liking. The babies. The babies! What can be said to console the parents about the babies? "I'll go phone the oncologist on duty to let him know," he says, and leaves the room.

"Come here, sweetie," the Mother says to the Baby, who has toddled off toward a gum wrapper on the floor. "We've got to put your jacket on." She picks him up and he reaches for the light switch again. Light, dark. Peekaboo: where's baby? Where did baby go?

At home, she leaves a message-"Urgent! Call me!"-for the Husband on his voice mail. Then she takes the Baby upstairs for his nap, rocks him in the rocker. The Baby waves good-bye to his little bears, then looks toward the window and says, "Bye-bye, outside." He has, lately, the habit of waving good-bye to everything, and now it seems as if he senses an imminent departure, and it breaks her heart to hear him. Bye-bye! She sings low and monotonously, like a small appliance, which is how he likes it. He is drowsy, dozy, drifting off. He has grown so much in the last year, he hardly fits in her lap anymore; his limbs dangle off like a pietà. His head rolls slightly inside the crook of her arm. She can feel him falling backward into sleep, his mouth round and open like the sweetest of poppies. All the lullabies in the world, all the melodies threaded through with maternal melancholy now become for her-abandoned as a mother can be by working men and napping babies-the songs of hard, hard grief. Sitting there, bowed and bobbing, the Mother feels the entirety of her love as worry and heartbreak. A quick and irrevocable alchemy: there is no longer one unworried scrap left for happiness. "If you go," she keens low into his soapy neck, into the ranunculus coil of his ear, "we are going with you. We are nothing without you. Without you, we are a heap of rocks. We are gravel and mold. Without you, we are two stumps, with nothing any longer in our hearts. Wherever this takes you, we are following. We will be there. Don't be scared. We are going, too. That is that."

"Take Notes," says the Husband, after coming straight home from work, midafternoon, hearing the news, and saying all the words out loud-surgery, metastasis, dialysis, transplant-then collapsing in a chair in tears. "Take notes. We are going to need the money."

"Good God," cries the Mother. Everything inside her suddenly begins to cower and shrink, a thinning of bones. Perhaps this is a soldier's readiness, but it has the whiff of death and defeat. It feels like a heart attack, a failure of will and courage, a power failure: a failure of everything. Her face, when she glimpses it in a mirror, is cold and bloated with shock, her eyes scarlet and shrunk. She has already started to wear sunglasses indoors, like a celebrity widow. From where will her own strength come? From some philosophy? From some frigid little philosophy? She is neither stalwart nor realistic and has trouble with basic concepts, such as the one that says events move in one direction only and do not jump up, turn around, and take themselves back.

The Husband begins too many of his sentences with "What if." He is trying to piece everything together like a train wreck. He is trying to get the train to town.

"We'll just take all the steps, move through all the stages. We'll go where we have to go. We'll hunt; we'll find; we'll pay what we have to pay. What if we can't pay?"

"Sounds like shopping."

"I cannot believe this is happening to our little boy," he says, and starts to sob again. "Why didn't it happen to one of us? It's so unfair. Just last week, my doctor declared me in perfect health: the prostate of a twenty-year-old, the heart of a ten-year-old, the brain of an insect-or whatever it was he said. What a nightmare this is."

What words can be uttered? You turn just slightly and there it is: the death of your child. It is part symbol, part devil, and in your blind spot all along, until, if you are unlucky, it is completely upon you. Then it is a fierce little country abducting you; it holds you squarely inside itself like a cellar room-the best boundaries of you are the boundaries of it. Are there windows? Sometimes aren't there windows?

The Mother is not a shopper. She hates to shop, is generally bad at it, though she does like a good sale. She cannot stroll meaningfully through anger, denial, grief, and acceptance. She goes straight to bargaining and stays there. How much? she calls out to the ceiling, to some makeshift construction of holiness she has desperately, though not uncreatively, assembled in her mind and prayed to; a doubter, never before given to prayer, she must now reap what she has not sown; she must assemble from scratch an entire altar of worship and begging. She tries for noble abstractions, nothing too anthropomorphic, just some Higher Morality, though if this particular Highness looks something like the manager at Marshall Field's, sucking a Frango mint, so be it. Amen. Just tell me what you want, requests the Mother. And how do you want it? More charitable acts? A billion starting now. Charitable thoughts? Harder, but of course! Of course! I'll do the cooking, honey; I'll pay the rent. Just tell me. Excuse me? Well, if not to you, to whom do I speak? Hello? To whom do I have to speak around here? A higher-up? A superior? Wait? I can wait. I've got all day. I've got the whole damn day.

The Husband now lies next to her in bed, sighing. "Poor little guy could survive all this, only to be killed in a car crash at the age of sixteen," he says.

The wife, bargaining, considers this. "We'll take the car crash," she says.

"What?"

"Let's Make a Deal! Sixteen Is a Full Life! We'll take the car crash. We'll take the car crash, in front of which Carol Merrill is now standing."

Now the Manager of Marshall Field's reappears. "To take the surprises out is to take the life out of life," he says.

The phone rings. The Husband gets up and leaves the room.

"But I don't want these surprises," says the Mother. "Here! You take these surprises!"

"To know the narrative in advance is to turn yourself into a machine," the Manager continues. "What makes humans human is precisely that they do not know the future. That is why they do the fateful and amusing things they do: who can say how anything will turn out? Therein lies the only hope for redemption, discovery, and-let's be frank-fun, fun, fun! There might be things people will get away with. And not just motel towels. There might be great illicit loves, enduring joy, faith-shaking accidents with farm machinery. But you have to not know in order to see what stories your life's efforts bring you. The mystery is all."

The Mother, though shy, has grown confrontational. "Is this the kind of bogus, random crap they teach at merchandising school? We would like fewer surprises, fewer efforts and mysteries, thank you. K through eight; can we just get K through eight?" It now seems like the luckiest, most beautiful, most musical phrase she's ever heard: K through eight. The very lilt. The very thought.

The Manager continues, trying things out. "I mean, the whole conception of 'the story,' of cause and effect, the whole idea that people have a clue as to how the world works is just a piece of laughable metaphysical colonialism perpetrated upon the wild country of time."

Did they own a gun? The Mother begins looking through drawers.

The Husband comes back into the room and observes her. "Ha! The Great Havoc that is the Puzzle of all Life!" he says of the Marshall Field's management policy. He has just gotten off a conference call with the insurance company and the hospital. The surgery will be Friday. "It's all just some dirty capitalist's idea of a philosophy."

"Maybe it's just a fact of narrative and you really can't politicize it," says the Mother. It is now only the two of them.

"Whose side are you on?"

"I'm on the Baby's side."

"Are you taking notes for this?"

"No."

"You're not?"

"No. I can't. Not this! I write fiction. This isn't fiction."

"Then write nonfiction. Do a piece of journalism. Get two dollars a word."

"Then it has to be true and full of information. I'm not trained. I'm not that skilled. Plus, I have a convenient personal principle about artists not abandoning art. One should never turn one's back on a vivid imagination. Even the whole memoir thing annoys me."

"Well, make things up, but pretend they're real."

"I'm not that insured."

"You're making me nervous."

"Sweetie, darling, I'm not that good. I can't do this. I can do-what can I do? I can do quasi-amusing phone dialogue. I can do succinct descriptions of weather. I can do screwball outings with the family pet. Sometimes I can do those. Honey, I only do what I can. I do the careful ironies of daydream. I do the marshy ideas upon which intimate life is built. But this? Our baby with cancer? I'm sorry. My stop was two stations back. This is irony at its most gaudy and careless. This is a Hieronymus Bosch of facts and figures and blood and graphs. This is a nightmare of narrative slop. This cannot be designed. This cannot even be noted in preparation for a design-"

"We're going to need the money."

"To say nothing of the moral boundaries of pecuniary recompense in a situation such as this-"

"What if the other kidney goes? What if he needs a transplant? Where are the moral boundaries there? What are we going to do, have bake sales?"

"We can sell the house. I hate this house. It makes me crazy."

"And we'll live-where again?"

"The Ronald McDonald place. I hear it's nice. It's the least McDonald's can do."

"You have a keen sense of justice."

"I try. What can I say?" She pauses. "Is all this really happening? I keep thinking that soon it will be over-the life expectancy of a cloud is supposed to be only twelve hours-and then I realize something has occurred that can never ever be over."

The Husband buries his face in his hands: "Our poor baby. How did this happen to him?" He looks over and stares at the bookcase that serves as the nightstand. "And do you think even one of these baby books is any help?" He picks up the Leach, the Spock, the What to Expect. "Where in the pages or index of any of these does it say 'chemotherapy' or 'Hickman catheter' or 'renal sarcoma'? Where does it say 'carcinogenesis'? You know what these books are obsessed with? Holding a fucking spoon." He begins hurling the books off the night table and against the far wall.

"Hey," says the Mother, trying to soothe. "Hey, hey, hey." But compared to his stormy roar, her words are those of a backup singer-a Shondell, a Pip-a doo-wop ditty. Books, and now more books, continue to fly.

Take Notes.

Is fainthearted one word or two? Student prose has wrecked her spelling.

It's one word. Two words-Faint Hearted-what would that be? The name of a drag queen.

Take Notes. In the end, you suffer alone. But at the beginning you suffer with a whole lot of others. When your child has cancer, you are instantly whisked away to another planet: one of bald-headed little boys. Pediatric Oncology. Peed Onk. You wash your hands for thirty seconds in antibacterial soap before you are allowed to enter through the swinging doors. You put paper slippers on your shoes. You keep your voice down. A whole place has been designed and decorated for your nightmare. Here is where your nightmare will occur. We've got a room all ready for you. We have cots. We have refrigerators. "The children are almost entirely boys," says one of the nurses. "No one knows why. It's been documented, but a lot of people out there still don't realize it." The little boys are all from sweet-sounding places-Janesville and Appleton-little heartland towns with giant landfills, agricultural runoff, paper factories, Joe McCarthy's grave (Alone, a site of great toxicity, thinks the Mother. The soil should be tested).

All the bald little boys look like brothers. They wheel their IVs up and down the single corridor of Peed Onk. Some of the lively ones, feeling good for a day, ride the lower bars of the IV while their large, cheerful mothers whiz them along the halls. Wheee!

The Mother does not feel large and cheerful. In her mind, she is scathing, acid-tongued, wraith-thin, and chain-smoking out on a fire escape somewhere. Beneath her lie the gentle undulations of the Midwest, with all its aspirations to be-to be what? To be Long Island. How it has succeeded! Strip mall upon strip mall. Lurid water, poisoned potatoes. The Mother drags deeply, blowing clouds of smoke out over the disfigured cornfields. When a baby gets cancer, it seems stupid ever to have given up smoking. When a baby gets cancer, you think, Whom are we kidding? Let's all light up. When a baby gets cancer, you think, Who came up with this idea? What celestial abandon gave rise to this? Pour me a drink, so I can refuse to toast.

The Mother does not know how to be one of these other mothers, with their blond hair and sweatpants and sneakers and determined pleasantness. She does not think that she can be anything similar. She does not feel remotely like them. She knows, for instance, too many people in Greenwich Village. She mail-orders oysters and tiramisu from a shop in SoHo. She is close friends with four actual homosexuals. Her husband is asking her to Take Notes.

Where do these women get their sweatpants? She will find out.

She will start, perhaps, with the costume and work from there.

She will live according to the bromides. Take one day at a time. Take a positive attitude. Take a hike! She wishes that there were more interesting things that were useful and true, but it seems now that it's only the boring things that are useful and true. One day at a time. And at least we have our health. How ordinary. How obvious. One day at a time. You need a brain for that?

While the Surgeon is fine-boned, regal, and laconic-they have correctly guessed his game to be doubles-there is a bit of the mad, overcaffeinated scientist to the Oncologist. He speaks quickly. He knows a lot of studies and numbers. He can do the math. Good! Someone should be able to do the math! "It's a fast but wimpy tumor," he explains. "It typically metastasizes to the lung." He rattles off some numbers, time frames, risk statistics. Fast but wimpy: the Mother tries to imagine this combination of traits, tries to think and think, and can only come up with Claudia Osk from the fourth grade, who blushed and almost wept when called on in class, but in gym could outrun everyone in the quarter-mile fire-door-to-fence dash. The Mother thinks now of this tumor as Claudia Osk. They are going to get Claudia Osk, make her sorry. All right! Claudia Osk must die. Though it has never been mentioned before, it now seems clear that Claudia Osk should have died long ago. Who was she anyway? So conceited: not letting anyone beat her in a race. Well, hey, hey, hey: don't look now, Claudia!

The Husband nudges her. "Are you listening?"

"The chances of this happening even just to one kidney are one in fifteen thousand. Now given all these other factors, the chances on the second kidney are about one in eight."

"One in eight," says the Husband. "Not bad. As long as it's not one in fifteen thousand."

The Mother studies the trees and fish along the ceiling's edge in the Save the Planet wallpaper border. Save the Planet. Yes! But the windows in this very building don't open and diesel fumes are leaking into the ventilating system, near which, outside, a delivery truck is parked. The air is nauseous and stale.

"Really," the Oncologist is saying, "of all the cancers he could get, this is probably the best."

"We win," says the Mother.

"Best, I know, hardly seems the right word. Look, you two probably need to get some rest. We'll see how the surgery and histology go. Then we'll start with chemo the week following. A little light chemo: vincristine and-"

"Vincristine?" interrupts the Mother. "Wine of Christ?"

"The names are strange, I know. The other one we use is actinomycin-D. Sometimes called 'dactinomycin.' People move the D around to the front."

"They move the D around to the front," repeats the Mother.

"Yup!" the Oncologist says. "I don't know why-they just do!"

"Christ didn't survive his wine," says the Husband.

"But of course he did," says the Oncologist, and nods toward the Baby, who has now found a cupboard full of hospital linens and bandages and is yanking them all out onto the floor. "I'll see you guys tomorrow, after the surgery." And with that, the Oncologist leaves.

"Or, rather, Christ was his wine," mumbles the Husband. Everything he knows about the New Testament, he has gleaned from the sound track of Godspell, "His blood was the wine. What a great beverage idea."

"A little light chemo. Don't you like that one?" says the Mother. "Eine kleine dactinomycin. I'd like to see Mozart write that one up for a big wad o' cash."

"Come here, honey," the Husband says to the Baby, who has now pulled off both his shoes.

"It's bad enough when they refer to medical science as 'an inexact science,' " says the Mother. "But when they start referring to it as 'an art,' I get extremely nervous."

"Yeah. If we wanted art, Doc, we'd go to an art museum." The Husband picks up the Baby. "You're an artist," he says to the Mother, with the taint of accusation in his voice. "They probably think you find creativity reassuring."

The Mother sighs. "I just find it inevitable. Let's go get something to eat." And so they take the elevator to the cafeteria, where there is a high chair, and where, not noticing, they all eat a lot of apples with the price tags still on them.

Because his surgery is not until tomorrow, the Baby likes the hospital. He likes the long corridors, down which he can run. He likes everything on wheels. The flower carts in the lobby! ("Please keep your boy away from the flowers," says the vendor. "We'll buy the whole display," snaps the Mother, adding, "Actual children in a children's hospital-unbelievable, isn't it?") The Baby likes the other little boys. Places to go! People to see! Rooms to wander into! There is Intensive Care. There is the Trauma Unit. The Baby smiles and waves. What a little Cancer Personality! Bandaged citizens smile and wave back. In Peed Onk, there are the bald little boys to play with. Joey, Eric, Tim, Mort, and Tod (Mort! Tod!). There is the four-year-old, Ned, holding his little deflated rubber ball, the one with the intriguing curling hose. The Baby wants to play with it. "It's mine. Leave it alone," says Ned. "Tell the Baby to leave it alone."

"Baby, you've got to share," says the Mother from a chair some feet away.

Suddenly, from down near the Tiny Tim Lounge, comes Ned's mother, large and blond and sweatpanted. "Stop that! Stop it!" she cries out, dashing toward the Baby and Ned and pushing the Baby away. "Don't touch that!" she barks at the Baby, who is only a Baby and bursts into tears because he has never been yelled at like this before.

Ned's mom glares at everyone. "This is drawing fluid from Neddy's liver!" She pats at the rubber thing and starts to cry a little.

"Oh my God," says the Mother. She comforts the Baby, who is also crying. She and Ned, the only dry-eyed people, look at each other. "I'm so sorry," she says to Ned and then to his mother. "I'm so stupid. I thought they were squabbling over a toy."

"It does look like a toy," agrees Ned. He smiles. He is an angel. All the little boys are angels. Total, sweet, bald little angels, and now God is trying to get them back for himself. Who are they, mere mortal women, in the face of this, this powerful and overwhelming and inscrutable thing, God's will? They are the mothers, that's who. You can't have him! they shout every day. You dirty old man! Get out of here! Hands off!

"I'm so sorry," says the Mother again. "I didn't know."

Ned's mother smiles vaguely. "Of course you didn't know," she says, and walks back to the Tiny Tim Lounge.

The Tiny Tim Lounge is a little sitting area at the end of the Peed Onk corridor. There are two small sofas, a table, a rocking chair, a television and a VCR. There are various videos: Speed, Dune, and Star Wars. On one of the lounge walls there is a gold plaque with the singer Tiny Tim's name on it: his son was treated once at this hospital and so, five years ago, he donated money for this lounge. It is a cramped little lounge, which, one suspects, would be larger if Tiny Tim's son had actually lived. Instead, he died here, at this hospital and now there is this tiny room which is part gratitude, part generosity, part fuck-you.

Sifting through the videocassettes, the Mother wonders what science fiction could begin to compete with the science fiction of cancer itself-a tumor with its differentiated muscle and bone cells, a clump of wild nothing and its mad, ambitious desire to be something: something inside you, instead of you, another organism, but with a monster's architecture, a demon's sabotage and chaos. Think of leukemia, a tumor diabolically taking liquid form, better to swim about incognito in the blood. George Lucas, direct that!

Sitting with the other parents in the Tiny Tim Lounge, the night before the surgery, having put the Baby to bed in his high steel crib two rooms down, the Mother begins to hear the stories: leukemia in kindergarten, sarcomas in Little League, neuroblastomas discovered at summer camp. "Eric slid into third base, but then the scrape didn't heal." The parents pat one another's forearms and speak of other children's hospitals as if they were resorts. "You were at St. Jude's last winter? So were we. What did you think of it? We loved the staff." Jobs have been quit, marriages hacked up, bank accounts ravaged; the parents have seemingly endured the unendurable. They speak not of the possibility of comas brought on by the chemo, but of the number of them. "He was in his first coma last July," says Ned's mother. "It was a scary time, but we pulled through."

Pulling through is what people do around here. There is a kind of bravery in their lives that isn't bravery at all. It is automatic, unflinching, a mix of man and machine, consuming and unquestionable obligation meeting illness move for move in a giant even-steven game of chess-an unending round of something that looks like shadowboxing, though between love and death, which is the shadow? "Everyone admires us for our courage," says one man. "They have no idea what they're talking about."

I could get out of here, thinks the Mother. I could just get on a bus and go, never come back. Change my name. A kind of witness relocation thing.

"Courage requires options," the man adds.

The Baby might be better off.

"There are options," says a woman with a thick suede headband. "You could give up. You could fall apart."

"No, you can't. Nobody does. I've never seen it," says the man. "Well, not really fall apart." Then the lounge falls quiet. Over the VCR someone has taped the fortune from a fortune cookie. "Optimism," it says, "is what allows a teakettle to sing though up to its neck in hot water." Underneath, someone else has taped a clipping from a summer horoscope. "Cancer rules!" it says. Who would tape this up? Somebody's twelve-year-old brother. One of the fathers-Joey's father-gets up and tears them both off, makes a small wad in his fist.

There is some rustling of magazine pages.

The Mother clears her throat. "Tiny Tim forgot the wet bar," she says.

Ned, who is still up, comes out of his room and down the corridor, whose lights dim at nine. Standing next to her chair, he says to the Mother, "Where are you from? What is wrong with your baby?"

In the tiny room that is theirs, she sleeps fitfully in her sweatpants, occasionally leaping up to check on the Baby. This is what the sweatpants are for: leaping. In case of fire. In case of anything. In case the difference between day and night starts to dissolve, and there is no difference at all, so why pretend? In the cot beside her, the Husband, who has taken a sleeping pill, is snoring loudly, his arms folded about his head in a kind of origami. How could either of them have stayed back at the house, with its empty high chair and empty crib? Occasionally the Baby wakes up and cries out, and she bolts up, goes to him, rubs his back, rearranges the linens. The clock on the metal dresser shows that it is five after three. Then twenty to five. And then it is really morning, the beginning of this day, nephrectomy day. Will she be glad when it's over, or barely alive, or both? Each day this week has arrived huge, empty, and unknown, like a spaceship, and this one especially is lit a bright gray.

"He'll need to put this on," says John, one of the nurses, bright and early, handing the Mother a thin greenish garment with roses and teddy bears printed on it. A wave of nausea hits her; this smock, she thinks, will soon be splattered with-with what?

The Baby is awake but drowsy. She lifts off his pajamas. "Don't forget, bubeleh," she whispers, undressing and dressing him. "We will be with you every moment, every step. When you think you are asleep and floating off far away from everybody, Mommy will still be there." If she hasn't fled on a bus. "Mommy will take care of you. And Daddy, too." She hopes the Baby does not detect her own fear and uncertainty, which she must hide from him, like a limp. He is hungry, not having been allowed to eat, and he is no longer amused by this new place, but worried about its hardships. Oh, my baby, she thinks. And the room starts to swim a little. The Husband comes in to take over. "Take a break," he says to her. "I'll walk him around for five minutes."

She leaves but doesn't know where to go. In the hallway, she is approached by a kind of social worker, a customer-relations person, who had given them a video to watch about the anesthesia: how the parent accompanies the child into the operating room, and how gently, nicely the drugs are administered.

"Did you watch the video?"

"Yes," says the Mother.

"Wasn't it helpful?"

"I don't know," says the Mother.

"Do you have any questions?" asks the video woman. "Do you have any questions?" asked of someone who has recently landed in this fearful, alien place seems to the Mother an absurd and amazing little courtesy. The very specificity of a question would give a lie to the overwhelming strangeness of everything around her.

"Not right now," says the Mother. "Right now, I think I'm just going to go to the bathroom."

When she returns to the Baby's room, everyone is there: the surgeon, the anesthesiologist, all the nurses, the social worker.

In their blue caps and scrubs, they look like a clutch of forget-me-nots, and forget them, who could? The Baby, in his little teddy-bear smock, seems cold and scared. He reaches out and the Mother lifts him from the Husband's arms, rubs his back to warm him.

"Well, it's time!" says the Surgeon, forcing a smile.

"Shall we go?" says the Anesthesiologist.

What follows is a blur of obedience and bright lights. They take an elevator down to a big concrete room, the anteroom, the greenroom, the backstage of the operating room. Lining the walls are long shelves full of blue surgical outfits. "Children often become afraid of the color blue," says one of the nurses. But of course. Of course! "Now, which one of you would like to come into the operating room for the anesthesia?"

"I will," says the Mother.

"Are you sure?" asks the Husband.

"Yup." She kisses the Baby's hair. "Mr. Curlyhead," people keep calling him here, and it seems both rude and nice. Women look admiringly at his long lashes and exclaim, "Always the boys! Always the boys!"

Two surgical nurses put a blue smock and a blue cotton cap on the Mother. The Baby finds this funny and keeps pulling at the cap. "This way," says another nurse, and the Mother follows. "Just put the Baby down on the table."

In the video, the mother holds the baby and fumes are gently waved under the baby's nose until he falls asleep. Now, out of view of camera or social worker, the Anesthesiologist is anxious to get this under way and not let too much gas leak out into the room generally. The occupational hazard of this, his chosen profession, is gas exposure and nerve damage, and it has started to worry him. No doubt he frets about it to his wife every night. Now he turns the gas on and quickly clamps the plastic mouthpiece over the baby's cheeks and lips.

The Baby is startled. The Mother is startled. The Baby starts to scream and redden behind the plastic, but he cannot be heard. He thrashes. "Tell him it's okay," says the nurse to the Mother.

Okay? "It's okay," repeats the Mother, holding his hand, but she knows he can tell it's not okay, because he can see not only that she is still wearing that stupid paper cap but that her words are mechanical and swallowed, and she is biting her lips to keep them from trembling. Panicked, he attempts to sit. He cannot breathe; his arms reach up. Bye-bye, outside. And then, quite quickly, his eyes shut; he untenses and has fallen not into sleep but aside to sleep, an odd, kidnapping kind of sleep, his terror now hidden someplace deep inside him.

"How did it go?" asks the social worker, waiting in the concrete outer room. The Mother is hysterical. A nurse has ushered her out.

"It wasn't at all like the filmstrip!'" she cries. "It wasn't like the filmstrip at all!"

"The filmstrip? You mean the video?" asks the social worker.

"It wasn't like that at all! It was brutal and unforgivable."

"Why that's terrible," she says, her role now no longer misinformational but janitorial, and she touches the Mother's arm, though the Mother shakes it off and goes to find the Husband.

She finds him in the large mulberry Surgery Lounge, where he has been taken and where there is free hot chocolate in small Styrofoam cups. Red cellophane garlands festoon the doorways. She has totally forgotten it is as close to Christmas as this. A pianist in the corner is playing "Carol of the Bells," and it sounds not only unfestive but scary, like the theme from The Exorcist.

There is a giant clock on the far wall. It is a kind of porthole into the operating room, a way of assessing the Baby's ordeal: forty-five minutes for the Hickman implant; two and a half hours for the nephrectomy. And then, after that, three months of chemotherapy. The magazine on her lap stays open at a ruby-hued perfume ad.

"Still not taking notes," says the Husband.

"Nope."

"You know, in a way, this is the kind of thing you've always written about."

"You are really something, you know that? This is life. This isn't a 'kind of thing.' "

"But this is the kind of thing that fiction is: it's the unlivable life, the strange room tacked onto the house, the extra moon that is circling the earth unbeknownst to science."

"I told you that."

"I'm quoting you."

She looks at her watch, thinking of the Baby. "How long has it been?"

"Not long. Too long. In the end, maybe those're the same things."

"What do you suppose is happening to him right this second?"

Infection? Slipping knives? "I don't know. But you know what? I've gotta go. I've gotta just walk a bit." The Husband gets up, walks around the lounge, then comes back and sits down.

The synapses between the minutes are unswimmable. An hour is thick as fudge. The Mother feels depleted; she is a string of empty tin cans attached by wire, something a goat would sniff and chew, something now and then enlivened by a jolt of electricity.

She hears their names being called over the intercom. "Yes? Yes?" She stands up quickly. Her words have flown out before her, an exhalation of birds. The piano music has stopped. The pianist is gone. She and the Husband approach the main desk, where a man looks up at them and smiles. Before him is a xeroxed list of patients' names. "That's our little boy right there," says the Mother, seeing the Baby's name on the list and pointing at it. "Is there some word? Is everything okay?"

"Yes," says the man. "Your boy is doing fine. They've just finished with the catheter, and they are moving on to the kidney."

"But it's been two hours already! Oh my God, did something go wrong? What happened? What went wrong?"

"Did something go wrong?" The Husband tugs at his collar.

"Not really. It just took longer than they expected. I'm told everything is fine. They wanted you to know."

"Thank you," says the Husband. They turn and walk back toward where they were sitting.

"I'm not going to make it." The Mother sighs, sinking into a fake leather chair shaped somewhat like a baseball mitt. "But before I go, I'm taking half this hospital out with me."

"Do you want some coffee?" asks the Husband.

"I don't know," says the Mother. "No, I guess not. No. Do you?"

"Nah, I don't, either, I guess," he says.

"Would you like part of an orange?"

"Oh maybe, I guess, if you're having one." She takes an orange from her purse and just sits there peeling its difficult skin, the flesh rupturing beneath her fingers, the juice trickling down her hands, stinging the hangnails. She and the Husband chew and swallow, discreetly spit the seeds into Kleenex, and read from photocopies of the latest medical research, which they begged from the intern. They read, and underline, and sigh and close their eyes, and after some time, the surgery is over. A nurse from Peed Onk comes down to tell them.

"Your little boy's in recovery right now. He's doing well. You can see him in about fifteen minutes."

How can it be described? How can any of it be described? The trip and the story of the trip are always two different things. The narrator is the one who has stayed home, but then, afterward, presses her mouth upon the traveler's mouth, in order to make the mouth work, to make the mouth say, say, say. One cannot go to a place and speak of it; one cannot both see and say, not really. One can go, and upon returning make a lot of hand motions and indications with the arms. The mouth itself, working at the speed of light, at the eye's instructions, is necessarily struck still; so fast, so much to report, it hangs open and dumb as a gutted bell. All that unsayable life! That's where the narrator comes in. The narrator comes with her kisses and mimicry and tidying up. The narrator comes and makes a slow, fake song of the mouth's eager devastation.

It is a horror and a miracle to see him. He is lying in his crib in his room, tubed up, splayed like a boy on a cross, his arms stiffened into cardboard "no-no's" so that he cannot yank out the tubes. There is the bladder catheter, the nasal-gastric tube, and the Hickman, which, beneath the skin, is plugged into his jugular, then popped out his chest wall and capped with a long plastic cap. There is a large bandage taped over his abdomen. Groggy, on a morphine drip, still he is able to look at her when, maneuvering through all the vinyl wiring, she leans to hold him, and when she does, he begins to cry, but cry silently, without motion or noise. She has never seen a baby cry without motion or noise. It is the crying of an old person; silent, beyond opinion, shattered. In someone so tiny, it is frightening and unnatural. She wants to pick up the Baby and run-out of there, out of there. She wants to whip out a gun: No-no's, eh? This whole thing is what I call a no-no. Don't you touch him! she wants to shout at the surgeons and the needle nurses. Not anymore! No more! No more! She would crawl up and lie beside him in the crib if she could. But instead, because of all his intricate wiring, she must lean and cuddle, sing to him, songs of peril and flight: "We gotta get out of this place, if it's the last thing we ever do. We gotta get out of this place . . . there's a better life for me and you."

Very 1967. She was eleven then and impressionable.

The Baby looks at her, pleadingly, his arms splayed out in surrender. To where? Where is there to go? Take me! Take me!

That night, postop night, the Mother and Husband lie afloat in the cot together. A fluorescent lamp near the crib is kept on in the dark. The Baby breathes evenly but thinly in his drugged sleep. The morphine in its first flooding doses apparently makes him feel as if he were falling backward-or so the Mother has been told-and it causes the Baby to jerk, to catch himself over and over, as if he were being dropped from a tree. "Is this right? Isn't there something that should be done?" The nurses come in hourly, different ones-the night shifts seem strangely short and frequent. If the Baby stirs or frets, the nurses give him more morphine through the Hickman catheter, then leave to tend to other patients. The Mother rises to check on him in the low light. There is gurgling from the clear plastic suction tube coming out of his mouth. Brownish clumps have collected in the tube. What is going on? The Mother rings for the nurse. Is it Renée or Sarah or Darcy? She's forgotten.

"What, what is it?" murmurs the Husband, waking up.

"Something is wrong," says the Mother. "It looks like blood in his N-G tube."

"What?" The Husband gets out of bed. He, too, is wearing sweatpants.

The nurse-Valerie-pushes open the heavy door to the room and enters quietly. "Everything okay?"

"There's something wrong here. The tube is sucking blood out of his stomach. It looks like it may have perforated his stomach and that now he's bleeding internally. Look!"

Valerie is a saint, but her voice is the standard hospital saint voice: an infuriating, pharmaceutical calm. It says, Everything is normal here. Death is normal. Pain is normal. Nothing is abnormal. So there is nothing to get excited about. "Well now, let's see." She holds up the plastic tube and tries to see inside it. "Hmmm," she says. "I'll call the attending physician."

Because this is a research and teaching hospital, all the regular doctors are at home sleeping in their Mission-style beds. Tonight, as is apparently the case every weekend night, the attending physician is a medical student. He looks fifteen. The authority he attempts to convey, he cannot remotely inhabit. He is not even in the same building with it. He shakes everyone's hands, then strokes his chin, a gesture no doubt gleaned from some piece of dinner theater his parents took him to once. As if there were an actual beard on that chin! As if beard growth on that chin were even possible! Our Town! Kiss Me Kate! Barefoot in the Park! He is attempting to convince, if not to impress.

"We're in trouble," the Mother whispers to the Husband. She is tired, tired of young people grubbing for grades. "We've got Dr. 'Kiss Me Kate,' here."

The Husband looks at her blankly, a mix of disorientation and divorce.

The medical student holds the tubing in his hands. "I don't really see anything," he says.

He flunks! "You don't?" The Mother shoves her way in, holds the clear tubing in both hands. "That," she says. "Right here and here." Just this past semester, she said to one of her own students, "If you don't see how this essay is better than that one, then I want you just to go out into the hallway and stand there until you do." Is it important to keep one's voice down? The Baby stays asleep. He is drugged and dreaming, far away.

"Hmmm," says the medical student. "Perhaps there's a little irritation in the stomach."

"A little irritation?" The Mother grows furious. "This is blood. These are clumps and clots. This stupid thing is sucking the life right out of him!" Life! She is starting to cry.

They turn off the suction and bring in antacids, which they feed into the Baby through the tube. Then they turn the suction on again. This time on low.

"What was it on before?" asks the Husband.

"High," says Valerie. "Doctor's orders, though I don't know why. I don't know why these doctors do a lot of the things they do."

"Maybe they're . . . not all that bright?" suggests the Mother. She is feeling relief and rage simultaneously: there is a feeling of prayer and litigation in the air. Yet essentially, she is grateful. Isn't she? She thinks she is. And still, and still: look at all the things you have to do to protect a child, a hospital merely an intensification of life's cruel obstacle course.

The Surgeon comes to visit on Saturday morning. He steps in and nods at the Baby, who is awake but glazed from the morphine, his eyes two dark unseeing grapes. "The boy looks fine," the Surgeon announces. He peeks under the Baby's bandage. "The stitches look good," he says. The Baby's abdomen is stitched all the way across like a baseball. "And the other kidney, when we looked at it yesterday face-to-face, looked fine. We'll try to wean him off the morphine a little, and see how he's doing on Monday." He clears his throat. "And now," he says, looking about the room at the nurses and medical students, "I would like to speak with the Mother, alone."

The Mothers heart gives a jolt. "Me?"

"Yes," he says, motioning, then turning.

She gets up and steps out into the empty hallway with him, closing the door behind her. What can this be about? She hears the Baby fretting a little in his crib. Her brain fills with pain and alarm. Her voice comes out as a hoarse whisper. "Is there something-"

"There is a particular thing I need from you," says the Surgeon, turning and standing there very seriously.

"Yes?" Her heart is pounding. She does not feel resilient enough for any more bad news.

"I need to ask you a favor."

"Certainly," she says, attempting very hard to summon the strength and courage for this occasion, whatever it is; her throat has tightened to a fist.

From inside his white coat, the surgeon removes a thin paperback book and thrusts it toward her, "Will you sign my copy of your novel?"

The Mother looks down and sees that it is indeed a copy of a novel she has written, one about teenaged girls.

She looks up. A big, spirited grin is cutting across his face. "I read this last summer," he says, "and I still remember parts of it! Those girls got into such trouble!"

Of all the surreal moments of the last few days, this, she thinks, might be the most so.

"Okay," she says, and the Surgeon merrily hands her a pen.

"You can just write To Dr.-Oh, I don't need to tell you what to write."

The Mother sits down on a bench and shakes ink into the pen. A sigh of relief washes over and out of her. Oh, the pleasure of a sigh of relief, like the finest moments of love; has anyone properly sung the praises of sighs of relief? She opens the book to the title page. She breathes deeply. What is he doing reading novels about teenaged girls, anyway? And why didn't he buy the hardcover?" She inscribes something grateful and true, then hands the book back to him.

"Is he going to be okay?"

"The boy? The boy is going to be fine," he says, then taps her stiffly on the shoulder. "Now you take care. It's Saturday. Drink a little wine."

Over the weekend, while the Baby sleeps, the Mother and Husband sit together in the Tiny Tim Lounge. The Husband is restless and makes cafeteria and sundry runs, running errands for everyone. In his absence, the other parents regale her further with their sagas. Pediatric cancer and chemo stories: the children's amputations, blood poisoning, teeth flaking like shale, the learning delays and disabilities caused by chemo frying the young, budding brain. But strangely optimistic codas are tacked on-endings as stiff and loopy as carpenter's lace, crisp and empty as lettuce, reticulate as a net-ah, words. "After all that business with the tumor, he's better now, and fitted with new incisors by my wife's cousin's husband, who did dental school in two and a half years, if you can believe that. We hope for the best. We take things as they come. Life is hard."

"Life's a big problem," agrees the Mother. Part of her welcomes and invites all their tales. In the few long days since this nightmare began, part of her has become addicted to disaster and war stories. She wants only to hear about the sadness and emergencies of others. They are the only situations that can join hands with her own; everything else bounces off her shiny shield of resentment and unsympathy. Nothing else can even stay in her brain. From this, no doubt, the philistine world is made, or should one say recruited? Together, the parents huddle all day in the Tiny Tim Lounge-no need to watch Oprah. They leave Oprah in the dust. Oprah has nothing on them. They chat matter-of-factly, then fall silent and watch Dune or Star Wars, in which there are bright and shiny robots, whom the Mother now sees not as robots at all but as human beings who have had terrible things happen to them.

Some of their friends visit with stuffed animals and soft greetings of "Looking good" for the dozing baby, though the room is way past the stuffed-animal limit. The Mother arranges, once more, a plateful of Mint Milano cookies and cups of take-out coffee for guests. All her nutso pals stop by-the two on Prozac, the one obsessed with the word penis in the word happiness, the one who recently had her hair foiled green. "Your friends put the de in fin de siècle," says the husband. Overheard, or recorded, all marital conversation sounds as if someone must be joking, though usually no one is.

She loves her friends, especially loves them for coming, since there are times they all fight and don't speak for weeks. Is this friendship? For now and here, it must do and is, and is, she swears it is. For one, they never offer impromptu spiritual lectures about death, how it is part of life, its natural ebb and flow, how we all must accept that, or other such utterances that make her want to scratch out some eyes. Like true friends, they take no hardy or elegant stance loosely choreographed from some broad perspective. They get right in there and mutter "Jesus Christ!" and shake their heads. Plus, they are the only people who not only will laugh at her stupid jokes but offer up stupid ones of their own. What do you get when you cross Tiny Tim with a pit bull? A child's illness is a strain on the mind. They know how to laugh in a fluty, desperate way-unlike the people who are more her husband's friends and who seem just to deepen their sorrowful gazes, nodding their heads with Sympathy. How exiling and estranging are everybody's Sympathetic Expressions! When anyone laughs, she thinks, Okay! Hooray: a buddy. In disaster as in show business.

Nurses come and go; their chirpy voices both startle and soothe. Some of the other Peed Onk parents stick their heads in to see how the Baby is and offer encouragement.

Green Hair scratches her head. "Everyone's so friendly here. Is there someone in this place who isn't doing all this airy, scripted optimism-or are people like that the only people here?"

"It's Modern Middle Medicine meets the Modern Middle Family," says the Husband. "In the Modern Middle West."

Someone has brought in take-out lo mein, and they all eat it out in the hall by the elevators.

Parents are allowed use of the Courtesy Line.

"You've got to have a second child," says a different friend on the phone, a friend from out of town. "An heir and a spare. That's what we did. We had another child to ensure we wouldn't off ourselves if we lost our first."

"Really?"

"I'm serious."

"A formal suicide? Wouldn't you just drink yourself into a lifelong stupor and let it go at that?"

"Nope. I knew how I would do it even. For a while, until our second came along, I had it all planned."

"What did you plan?"

"I can't go into too much detail, because-Hi, honey!-the kids are here now in the room. But I'll spell out the general idea: R-O-P-E."

Sunday evening, she goes and sinks down on the sofa in the Tiny Tim Lounge next to Frank, Joey's father. He is a short, stocky man with the currentless, flatlined look behind the eyes that all the parents eventually get here. He has shaved his head bald in solidarity with his son. His little boy has been battling cancer for five years. It is now in the liver, and the rumor around the corridor is that Joey has three weeks to live. She knows that Joey's mother, Heather, left Frank years ago, two years into the cancer, and has remarried and had another child, a girl named Brittany. The Mother sees Heather here sometimes with her new life-the cute little girl and the new, young, full-haired husband who will never be so maniacally and debilitatingly obsessed with Joey's illness the way Frank, her first husband, was. Heather comes to visit Joey, to say hello and now good-bye, but she is not Joey's main man. Frank is.

Frank is full of stories-about the doctors, about the food, about the nurses, about Joey. Joey, affectless from his meds, sometimes leaves his room and comes out to watch TV in his bathrobe. He is jaundiced and bald, and though he is nine, he looks no older than six. Frank has devoted the last four and a half years to saving Joey's life. When the cancer was first diagnosed, the doctors gave Joey a 20 percent chance of living six more months. Now here it is, almost five years later, and Joey's still here. It is all due to Frank, who, early on, quit his job as vice president of a consulting firm in order to commit himself totally to his son. He is proud of everything he's given up and done, but he is tired. Part of him now really believes things are coming to a close, that this is the end. He says this without tears. There are no more tears.

"You have probably been through more than anyone else on this corridor," says the Mother.

"I could tell you stories," he says. There is a sour odor between them, and she realizes that neither of them has bathed for days.

"Tell me one. Tell me the worst one." She knows he hates his ex-wife and hates her new husband even more.

"The worst? They're all the worst. Here's one: one morning, I went out for breakfast with my buddy-it was the only time I'd left Joey alone ever; left him for two hours is all-and when I came back, his N-G tube was full of blood. They had the suction on too high, and it was sucking the guts right out of him."

"Oh my God. That just happened to us," said the Mother.

"It did?"

"Friday night."

"You're kidding. They let that happen again? I gave them such a chewing-out about that!"

"I guess our luck is not so good. We get your very worst story on the second night we're here."

"It's not a bad place, though."

"It's not?"

"Naw. I've seen worse. I've taken Joey everywhere."

"He seems very strong." Truth is, at this point, Joey seems like a zombie and frightens her.

"Joey's a fucking genius. A biological genius. They'd given him six months, remember."

The Mother nods.

"Six months is not very long," says Frank. "Six months is nothing. He was four and a half years old."

All the words are like blows. She feels flooded with affection and mourning for this man. She looks away, out the window, out past the hospital parking lot, up toward the black marbled sky and the electric eyelash of the moon. "And now he's nine," she says. "You're his hero."

"And he's mine," says Frank, though the fatigue in his voice seems to overwhelm him. "He'll be that forever. Excuse me," he says, "I've got to go check. His breathing hasn't been good. Excuse me."

"Good news and bad," says the Oncologist on Monday. He has knocked, entered the room, and now stands there. Their cots are unmade. One wastebasket is overflowing with coffee cups. "We've got the pathologist's report. The bad news is that the kidney they removed had certain lesions, called 'rests,' which are associated with a higher risk for disease in the other kidney. The good news is that the tumor is stage one, regular cell structure, and under five hundred grams, which qualifies you for a national experiment in which chemotherapy isn't done but your boy is monitored with ultrasound instead. It's not all that risky, given that the patient's watched closely, but here is the literature on it. There are forms to sign, if you decide to do that. Read all this and we can discuss it further. You have to decide within four days."

Lesions? Rests? They dry up and scatter like M&M's on the floor. All she hears is the part about no chemo. Another sigh of relief rises up in her and spills out. In a life where there is only the bearable and the unbearable, a sigh of relief is an ecstasy.

"No chemo?" says the Husband. "Do you recommend that?"

The Oncologist shrugs. What casual gestures these doctors are permitted! "I know chemo. I like chemo," says the Oncologist. "But this is for you to decide. It depends how you feel."

The Husband leans forward. "But don't you think that now that we have the upper hand with this thing, we should keep going? Shouldn't we stomp on it, beat it, smash it to death with the chemo?"

The Mother swats him angrily and hard. "Honey, you're delirious!" She whispers, but it comes out as a hiss. "This is our lucky break!" Then she adds gently, "We don't want the Baby to have chemo."

The Husband turns back to the Oncologist. "What do you think?"

"It could be," he says, shrugging. "It could be that this is your lucky break. But you won't know for sure for five years."

The Husband turns back to the Mother. "Okay," he says. "Okay."

The Baby grows happier and strong. He begins to move and sit and eat. Wednesday morning, they are allowed to leave, and leave without chemo. The Oncologist looks a little nervous. "Are you nervous about this?" asks the Mother.

"Of course I'm nervous." But he shrugs and doesn't look that nervous. "See you in six weeks for the ultrasound," he says, waves and then leaves, looking at his big black shoes as he does.

The Baby smiles, even toddles around a little, the sun bursting through the clouds, an angel chorus crescendoing. Nurses arrive. The Hickman is taken out of the Baby's neck and chest; antibiotic lotion is dispensed. The Mother packs up their bags. The Baby sucks on a bottle of juice and does not cry.

"No chemo?" says one of the nurses. "Not even a little chemo?"

"We're doing watch and wait," says the Mother.

The other parents look envious but concerned. They have never seen any child get out of there with his hair and white blood cells intact.

"Will you be okay?" asks Ned's mother.

"The worry's going to kill us," says the Husband.

"But if all we have to do is worry," chides the Mother, "every day for a hundred years, it'll be easy. It'll be nothing. I'll take all the worry in the world, if it wards off the thing itself."

"That's right," says Ned's mother. "Compared to everything else, compared to all the actual events, the worry is nothing."

The Husband shakes his head. "I'm such an amateur," he moans.

"You're both doing admirably," says the other mother. "Your baby's lucky, and I wish you all the best."

The Husband shakes her hand warmly. "Thank you," he says. "You've been wonderful."

Another mother, the mother of Eric, comes up to them. "It's all very hard," she says, her head cocked to one side. "But there's a lot of collateral beauty along the way."

Collateral beauty? Who is entitled to such a thing? A child is ill. No one is entitled to any collateral beauty!

"Thank you," says the Husband.

Joey's father, Frank, comes up and embraces them both.

"It's a journey," he says. He chucks the Baby on the chin. "Good luck, little man."

"Yes, thank you so much," says the Mother. "We hope things go well with Joey." She knows that Joey had a hard, terrible night.

Frank shrugs and steps back. "Gotta go," he says. "Good-bye!"

"Bye," she says, and then he is gone. She bites the inside of her lip, a bit tearily, then bends down to pick up the diaper bag, which is now stuffed with little animals; helium balloons are tied to its zipper. Shouldering the thing, the Mother feels she has just won a prize. All the parents have now vanished down the hall in the opposite direction. The Husband moves close. With one arm, he takes the Baby from her; with the other, he rubs her back. He can see she is starting to get weepy.

"Aren't these people nice? Don't you feel better hearing about their lives?" he asks.

Why does he do this, form clubs all the time; why does even this society of suffering soothe him? When it comes to death and dying, perhaps someone in this family ought to be more of a snob.

"All these nice people with their brave stories," he continues as they make their way toward the elevator bank, waving good-bye to the nursing staff as they go, even the Baby waving shyly, Bye-bye? Bye-Bye? Don't you feel consoled, knowing we're all in the same boat, that we're all in this together?"

But who on earth would want to be in this boat? the Mother thinks. This boat is a nightmare boat. Look where it goes: to a silver-and-white room, where, just before your eyesight and hearing and your ability to touch or be touched disappear entirely, you must watch your child die.

Rope! Bring on the rope.

"Let's make our own way," says the Mother, "and not in this boat."

Woman Overboard! She takes the Baby back from the Husband, cups the Baby's cheek in her hand, kisses his brow and then, quickly, his flowery mouth. The Baby's heart-she can hear it-drums with life. "For as long as I live," says the Mother, pressing the elevator button-up or down, everyone in the end has to leave this way-"I never want to see any of these people again."

There are the notes.

Now where is the money?~  

 


  - The President's Council on Bioethics -  
 
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