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?~
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