“How long does the poem have to be?” Sue Berg asks.
“At least fifteen lines.”
Jimmy Halverson groans. This will be easier than Ann thought.
“Do we have to do it?” Jimmy Halverson asks.
“No.”
Right before the end of the school day, Mrs. Zuckerman says, “Ann please remember that you are ringing the bell tomorrow.” Of course Ann remembers.
On the way to the bus, Cathy Gunderson yanks Ann’s hair at the back of her head. “Hey you.”
“What?” Ann asks.
“I hope you know you have blackheads on your nose.”
“So,” Ann snaps back. But she is shocked. She blinks quickly and her chin wobbles, but she is not going to show any sort of emotion.
“You don’t either have blackheads. She’s just jealous,” Sue whispers to her, looking behind at Cathy.
Ann knows she’s been insulted, and she’d like to talk to Sue about the blackheads, but she’s embarrassed. She doesn’t actually know what blackheads are. At home, Ann examines her nose in the mirror of the downstairs bathroom. Cathy is right, there are little specks of black on the tip of her nose. Those must be the blackheads. Is it dirt? Is it a disease? What’s going to happen to Ann now? Will they spread? Ann feels the tears come. The only benefit of crying is that it blurs her vision and she can’t see her disgusting nose. Ann hates Cathy and wishes she would trip and break her wrist or that a dog would bite her or that her hair would fall out in clumps.
“Ann’s crying,” Chrissy sings when Ann opens the bathroom door.
“What’s wrong?” the Doctor’s Wife asks, stubbing out her cigarette in an ashtray. She immediately rinses the ashtray under the tap, cranking closed the window over the sink.
“Cathy Gunderson said I had blackheads.”
“What’s a blackhead?” Chrissy asks.
“A blackhead is a clogged pore,” the Doctor’s Wife says. “Let me see.”
She takes Ann’s face in her hands. Now Ann feels worse. She doesn’t care to be examined this closely. The Doctor’s Wife squints and Ann has a sudden quick horror about what she is going to be forced to do. The usual treatment for any sort of ailment—a splinter, a cut, a hangnail, an ingrown hair—is to soak the offending appendage in a bowl of salty water made as hot as you can stand it. Ann imagines dipping her nose in that. No thank you.
“Scrub it with a warm, soapy washcloth,” the Doctor’s Wife says, dropping Ann’s jaw, turning around to go up the stairs. Ann follows her mother into John’s bedroom. Scrubbing isn’t so bad. “How are you feeling darling?” the Doctor’s Wife asks John, running her hand over his forehead, behind his neck, checking his diaper in one movement.
Doesn’t she know John can’t answer? “I need to memorize a poem.”
“What poem?”
“It has to be at least fifteen lines.”
“Can it be part of a poem?”
“I guess so,” Ann says. She hadn’t thought about that.
“What about Walt Whitman?” the Doctor’s Wife asks. She quickly changes John’s diaper, his clothes, fluffs his pillow, kisses him on the forehead. She doesn’t say anything to Ann while she’s doing this.
“Who’s Walt Whitman?”
“Look him up.”
“Will you help me practice?”
“What?”
“Practice my poem.”
“Hurry downstairs. Look on the bookshelf in the living room. Go scrub your face and find your poem.”
“Then will you help me?”
“Get your sister to help.” Chrissy is going to be worse than useless at this. As Ann takes the stairs one at a time, she hears her mother reading a book to John. In the living room, Ann finds Walt Whitman. The whole book is a poem! What if she memorized the whole thing? Is that even possible? She looks at the cover, the name Whitman sinking in. What an odd coincidence. She wonders if Walt is related to Narcissa and Marcus. What if he was a cousin? Her cousins are in Florida and during one visit Ann got to eat Key lime pie made with real Key limes. The pie was tart and delicious and she wouldn’t mind having a piece right now. She’d mention to her mom that she’d like to make some Key Lime pie, except that her mother has made it clear that she doesn’t have time for anything extraneous.
The first part of the book is called “Song of Myself.” She’ll memorize the first twenty lines to make sure that she’s done what she is supposed to. Surely she couldn’t be expected to memorize the whole book, even if she could? Even if she wanted to? Twenty lines should be fine.
The only way to memorize anything is to practice it over and over. She lies down on the long couch in the living room and mouths the words to herself for hours before dinner. If you want to win the table manners prize you can’t read during dinner. Ann skips dessert to run through the poem with her mother, both of them sitting blissfully alone in the living room. When she’s in bed, she tries to fix the poem in her head before she sleeps.
“What I assume you shall assume,” Ann whispers to herself again.
“Shut up,” Chrissy says, holding a pillow over hear head. “I’m trying to sleep. Why do you have to whisper so loud?”
Ann has been kept awake her whole life by the hall light. Chrissy can shove it. Ann stops whispering and says the words in a normal voice. Chrissy leaps out of bed carrying her pillow with her and whacks Ann’s book out of her hand, sending it flying across the room. Ann calmly gets out of bed and picks up the book from the floor, settling back into bed.
“Goodnight, girls,” their mother says, poking her head in, which prevents Chrissy from retaliating immediately.
The next morning, Ann runs over the lines before breakfast. She’d like to double-check the lines on the bus, but it makes her carsick, and there isn’t any time to really practice before school because she has to ring the bell. She doesn’t even really enjoy ringing the bell because as she pulls the rope she thinks about the lines of the poem, repeating them to herself.
“Does anybody have a poem to recite today?” Mrs. Zuckerman asks after the Pledge of Allegiance.
Ann’s shy, so she’d rather not get up in front of the class, but at the same time she has to win. She raises her hand.
“Ann? Anybody else?”
No, there’s nobody else, and Mrs. Zuckerman calls Ann to the front of the classroom.
Ann takes a deep breath and focuses on the map of Washington State at the back of the room. The words—as they’ve been trained to do—march from her brain to her mouth, spoken as they were learned. When she’s done, she stops.
“Perfect,” Mrs. Zuckerman says. That’s what Ann likes to hear.
Eggs
The Doctor’s Wife can’t get any protein down John. The solution she and her husband come across is to soft-boil eggs, barely cooked really, so that they can slip nourishment down his throat. He’s wasting away because he doesn’t have enough to eat. Anybody would go into decline if he couldn’t eat.
Study Club
When the Doctor’s study club comes over, the Doctor’s Wife and the kids are supposed to be scarce while its members analyze cigars, Canadian Club, and poker around the kitchen table. John is up with the Doctor’s Wife in the sewing room. The kids are in the basement, roller skating around the furnace. The phone rings and the Doctor’s Wife goes into her bedroom to answer. “Dorothy O’Hara for you. It’s about Ace.”
“Killed one of your chickens?” he asks after he picks up the extension in the kitchen. “Why don’t I give you a free house call?”
“Two chickens?”
“Two house calls?”
This has happened before, and more than once. Ace has even taught Gretel to kill chickens. Ace lopes into the yard holding the chicken by the neck. “Bad dog,” the Doctor mutters. The Doctor’s Wife, the study club, and the kids file outdoors behind him. The Doctor takes the chicken from Ace’s mouth. He takes a stout rope and ties it around the chicken’s neck and then ties it to Ace’s collar, who tries to bite the chicke
n but can’t reach it. A week later, the chicken rots off Ace’s neck. Ace is cured of his taste for live chicken.
Seizures
“Go get help,” the Doctor’s Wife yells at Chrissy. The Doctor’s Wife is holding John down on the couch while he thrashes.
Chrissy runs next door, jumping from the retaining wall down to the driveway of Franny and Marylin Rubatino’s house. She bangs on the door.
“Come quick, it’s John,” she says, “He’s having a seizure.”
Franny runs after her. When they get back to the house, Chrissy can’t watch. She runs upstairs and buries her face in her pillow.
Bond Issue III
People try to sell their houses and they can’t. Who wants to buy a house with a bad septic tank? Who wants to buy a house fronting a dirty lake? Nobody wants to change until it hurts more to stay the same.
A Sense of Humor
The eggs can’t be too tough, but neither can they run, the Doctor insists. On the one hand, the Doctor’s Wife understands her husband’s finickiness. She hates the rubbery white part of a boiled egg. Nevertheless, yesterday when the Doctor complained about how she’d prepared the eggs, she’d flown into a rage, stopping herself at the last second from throwing a plate on the floor. “You can make your own eggs,” she’d snapped.
“I’d be glad to,” he’d replied calmly, which didn’t help her mood.
What she can and will do is set the table, heat the water in the teakettle and balance the raw eggs on the counter, so that the Doctor can boil them when he is ready. She even makes him toast, flinging it on a plate, scraping it with butter. She’d be better off if she could sit down for a second and have a cigarette, but for that she’ll have to wait.
“Breakfast is ready,” she shouts upstairs. Where are the kids? She stomps up. She can feel herself stomping. The girls are sleeping in their twin beds, the brand new ones they’d immediately carved their names into with the beheaded tips of bobby pins. “Wake up, darlings,” she says, clapping her hands loudly. Chrissy’s leg hangs out of the bed and Ann opens her eyes.
“I’m awake,” Ann says, sitting bolt upright.
“Well, get up.”
She goes into Bob’s room. “Rise and shine, baby,” she says, opening the door. He’s sitting at his desk in his pajamas, his taxidermy kit in front of him. He’s holding an open jar of fake eyes. “Wash your hands and come down for breakfast.”
The Doctor’s Wife takes towels from the upstairs bathroom to the utility porch downstairs, where she throws them in the washing machine. She hates to have any laundry left over from the day before. She goes back upstairs to check on John, who is still sleeping, breathing raggedly. She kisses him on his forehead and rubs his back.
Downstairs, she sees that the Doctor has had his breakfast, but left his toast. Why does she bother? She dumps the toast into the trash.
“What happened to breakfast?” the Doctor asks when he emerges from the downstairs bathroom. The Doctor’s Wife sees the eggs on the counter, sees that she’s cleared his plate before he even sat down to eat.
She whoops with laughter. The kids come down in a stampede.
“What’s wrong, mom?” Ann asks, sleep in her eyes, but sounding alarmed. The Doctor shakes his head.
Nobody else seems to think that what she did is at all funny. She is the only one with a sense of humor.
There’s Nothing Bad That Can’t Get Worse
The Doctor’s Wife takes John down to Seattle Children’s Hospital where she stays with him for five days while yet more tests are run. On the third day, a Saturday, the Doctor drives the other kids from Lake Stevens. Healthy children are not allowed in the Children’s Hospital, so the Doctor’s Wife holds John up at the window while she waves at the others standing down below in the parking lot.
Children’s Hospital can’t say what’s wrong, so a few weeks later the Doctor’s Wife takes John to the University of Washington Hospital, and there the neurologists can’t say exactly either, but they finally have an idea. Electrical charges move along neurons to control everything we do. John’s body doesn’t make myelin, the protein that acts as a protective sheath around the neurons, so the electrical signals from his brain can’t travel fast enough, and the signal goes uselessly into the surrounding tissues. What this means, for example, is that the electrical command is lost in between John’s brain and his throat and so he can’t swallow. That’s all the doctors can say.
“Neurologists either know what’s wrong and can’t do anything about it, or they don’t know what’s wrong and can’t do anything about it,” the Doctor says to his wife. The Doctor and the Doctor’s Wife face a choice. They can take John to The Mayo Clinic or the Johns Hopkins, turning their lives over to useless hope. Or they can take him home.
They take him home.
Sleepaway Camp
Ann packs her vinyl suitcase. She doesn’t usually like to spend any time away from home and she especially doesn’t see the point of going to Campfire Girl camp. There’s a lake to swim in and activities like archery and sailing, but Ann doesn’t like activities. She likes to read and she likes to swim. She has her own lake right in the front yard. But she wants to prove to herself that she can be brave. Also her mother has sewn Ann’s name into all of her clothes, and it’s too late to back out of it.
“I’m going to have the room all to myself,” Chrissy says. Ann places her rolled up socks in her suitcase. “And I’m going to sleep in your bed.”
“I don’t care.”
“I’m going to sleep in your bed in my bathing suit.”
“So.”
“I’m going to put an earwig in your bed and it’s going to lay eggs.”
Ann hates the thought of earwigs and Chrissy knows it, but she keeps her mouth shut.
“You’re so mean!” Chrissy shrieks.
Their mother comes in to the room and hugs them close. “Oh, Ann. Chrissy.” Their mother is crying and she squeezes them. Ann knows what happened.
“Am I still going to go to Campfire Girl camp?”
“No, darling.”
The Doctor and the Doctor’s Wife think that it is necessary for the kids to see John’s body so that they don’t think of death as an unnatural event. The kids file in. What do they do? Where do they look? Their little brother is skinny from not eating and his chest doesn’t move.
The Pacific War
The Doctor has been trying not to worry so much. He’s on a fishing trip with Gretel and Bobby, who’s thirteen. They’re on the northern fork of the Stilliguamish, fishing for steelhead, but not right this moment. It’s too late in the morning to fish. The Doctor and his son are eating ham sandwiches, standing up. Gretel follows the Doctor’s every movement: hand to mouth, hand resting slack by the waist, then up to the mouth again.
The Doctor takes a drink from his beer can. A sharp, hot pain sears his throat. He drops his beer can on the ground and says, “Jesus Christ,” but doesn’t yell. Gretel laps up the spilled beer as it seeps into the riverbank. He didn’t yell, because he doesn’t like to yell, but he wishes he did. You never expect a bee sting to hurt as much as it does.
“Bee stung my throat,” the Doctor says by way of explanation to his son.
“Is the bee still in there?” asks Bob.
“I’m pretty sure I swallowed it,” the Doctor says, surprised to think this is true.
“Where’s the stinger?”
The Doctor harrumphs. “It seems to still be in my throat.” If his throat starts to swell shut, something will have to be done quickly. He knows how to perform an emergency tracheotomy. The first he ever did was on the deck of the destroyer O’Bannon, off the coast of Guadalcanal. For the burned soldier shedding sheets of skin, the tracheotomy was as useless as the syrettes of morphine.
“If I pass out, I need you to help me,” the Doctor says to his son. He takes a knife out of the tackle box, and a ballpoint pen from his shirt pocket, removing the ink reservoir from the pen’s casing. He takes Bob’s hand and guides
his finger to the place between the Adam’s apple and the cricoid cartilage. “With the knife, make a half-inch slit, pinch the cut, and then poke the tube through the hole. I’ll regain consciousness when I can breathe again.”
“OK,” Bob says, drawing his hand to his own throat.
“Probably you won’t have to do it,” the Doctor says, handing his son the pen. Gretel, done with the beer, moves closer to the Doctor, putting her head under his right hand. “Good dog,” the Doctor says.
“Dad?” Bob asks, coming close. Their hands almost touch on the top of the dog’s head.
The Doctor looks at the river, birch trees leaning toward the water, the steelhead hiding in the shadows. Two big dragonflies buzz past, connected to each other, mating. Gretel, who might not be the smartest dog, lopes after the dragonflies, snapping her jaws.
“Dad?” Bob asks again.
“Yes?”
“What do I do after you wake up?”
PART II
Me
“When did you find out what John had?” I ask my grandmother on the telephone.
“We knew pretty soon after he died. We sent off tissue samples to Atlanta.”
“To the CDC?”
“Yes.”
“It seems like there aren’t any journal articles about meta-chromatic leukodystrophy until the early sixties.”
“That sounds about right.”
We’re quiet. The disease is still incurable. Nobody lives past the age of four.
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