by Lisa Genova
“One-a-you has-to-lif-my shir. I-ca-na do-it.”
Richard looks to Brendan and raises his eyebrows twice. Brendan tentatively leaves his seat, walks over to his uncle, and pauses. He looks back at his parents.
“Go-fo-rit.”
He gently lifts his uncle’s shirt, exposing a quarter-size white plastic disk flush with the upper part of Richard’s hairy stomach.
“Ew,” says Brendan, releasing the shirt.
“Brendan!” says Emily. “That’s not nice.”
Brendan quickly retreats to his seat between his parents. Mikey swats him on the head with a rolled funeral missalette. Richard’s shirt has fallen back down over his stomach, but everyone in the room is still studying the spot where the tube lives, imagining what they just saw.
“So what goes in that?” asks Mikey.
“It’s called Liquid Gold,” says Karina. “It’s like baby formula.”
“Tase-lie chi-cken.”
“Really?” asks Tommy.
“No.” Richard smiles. “I-am ki-ding.”
“What are you doing to fight it?” asks Mikey.
“Wha-do-you-mean?”
“Look at that guy who started the Ice Bucket Challenge, right? And the movie Gleason. Did you see it? That defensive back from the New Orleans Saints. He got ALS and started a nonprofit. Their slogan is ‘No White Flags.’ Guy’s an inspiration. A real hero. You can’t just take this lying down, Ricky. You gotta fight it.”
Former captain of their high school football and baseball teams, cornerback at the University of New Hampshire, Mikey sees every obstacle as an opponent that can be beaten, a game that can be won.
“How-do-you thin-I-shu fight?”
“I dunno. Look at what those guys did.”
“You-wa-me-to dum-pa bu-cket a-ice o-vah-my-head?”
Or block a punt? Get a trach and go on life support when he can no longer breathe? Is living at any cost winning? ALS isn’t a game of football. This disease doesn’t wear a numbered jersey, lose a star player to injury, or suffer a bad season. It is a faceless enemy, an opponent with no Achilles’ heel and an undefeated record.
“I dunno. I’d do something though. Start another challenge or make a documentary or something. Something that helps find the cure. The key is fighting and not giving up.”
“O-kay.”
“It’s good you’re still walking. Those other guys are in wheelchairs.”
“I-will-be in-one-soo.”
“Maybe not. You never know. You gotta stay positive. You should go to the gym, lift some weights and strengthen your leg muscles. If this disease starts stealing your muscle mass, you get ahead of it and build more. You beat it.”
Richard smiles. He appreciates the thought, but that isn’t how muscle atrophy in ALS works. The disease doesn’t discriminate between strong and weak muscles, old or new. It takes them all. Exercise won’t buy him more time. High tide is coming. The height and grandeur of the sand castle doesn’t matter. The sea is eventually going to rush in, sweeping every single grain of sand away.
“Goo-i-de-a.”
“I don’t know how you do it,” says Tommy. “I don’t think I could ever go without food.”
“Then-you-be gi-vin-up. This-tu-bis how-you fi-ALS.”
It ain’t sexy. Richard’s PEG tube and BiPAP aren’t interesting enough fodder for a movie or a global Internet phenomenon. His fight is a quiet, personal, daily struggle to simply breathe and consume enough calories to keep being here.
“It’s good to see that you two are back together,” says Emily.
“We’re not back together,” says Karina.
“Yah.” Richard smiles. “We-jus li-vin-in sin.”
“No,” says Karina. “There’s no sinning going on whatsoever.”
“That’s too bad,” says Mikey.
Emily laughs. “Well, that’s really amazing then, what you’re doing for him.”
Karina says nothing. Richard says nothing and doesn’t look in Karina’s direction, embarrassed that Emily has so easily articulated what Richard has never said. And although he’d like to, he can’t blame ALS for his silence.
“So, Ricky,” says Mikey. “We want to talk to you about Dad’s will. We already knew about this before he died, but he left the house to me and Tommy.”
Of course he did.
“But we talked it over and agreed that we’re going to sell the house and split it three ways.”
Everyone waits.
Richard repeats what he just heard in his head and asks, “Really?”
“Yeah. He had three sons, not two. That ain’t right, and we want to do the right thing.”
“Yeah, man,” says Tommy. “I hate that I never stood up for you when we were kids. Dad was really hard on you.”
“He could be a bullheaded bastard,” says Mikey.
Tommy nods. “We’re standing up for you now.”
It never occurred to Richard that his big, brave, tough jock brothers were scared of their father, too. To show any allegiance with their youngest brother would’ve risked being forsaken, ostracized, disowned. Like Richard. His brothers weren’t as macho as he thought they were. And he doesn’t blame them.
“He was also a great father,” says Mikey, his voice out of air, jaw clamped, wiping the outside corner of his eyes with his fingers. “Sorry you never got that side of him, Ricky.”
“You know, you were better at piano than either of us clowns have ever been at anything,” says Tommy. “He should’ve been proud of you. Jessie Googled you, and we all watched your performance at Lincoln Center.”
“Holy shit, man,” says Mikey.
“Yeah, you’re amazing,” says Emily.
“I wish Mom could’ve seen you play there,” says Tommy.
“Tha-means-so much to-me.” Tears spill down Richard’s face.
He never saw that coming. With the death of the autocratic dictator, their Berlin Wall crumbled, and his brothers were right there, waiting for him on the other side. Karina pulls a tissue from her purse, walks over to Richard, and mops up his wet face.
“Three ways,” says Mikey. “That’s the fair thing. It wasn’t right how Dad treated you. Our son, Alex, is a junior now, hasn’t willingly picked up a ball since he was six. He’s into musicals. Loves to sing and dance.”
“He’s really good,” says Emily.
“Yeah. And he’s a great kid. Can’t imagine doing to him what Dad did to you.” Mikey sighs. “And I wouldn’t be the man I am without him.”
Tommy nods. Mikey knocks back his Budweiser. Richard absorbs the acceptance and apology given to him by his brothers, and a space begins clearing inside him, a field stretched to the horizon, a morning sky, a universe of stars. Still overwhelmed and unable to speak, he silently thanks his brothers, one generation healing the wounds inflicted by another.
“I’m sorry to break this up, but we really have to get going,” says Karina.
“Can’t you stay another night?” asks Emily.
“No, we have to get Grace to the airport. She needs to get back to school.”
“Let’s do a toast to Dad before you go,” says Mikey, cracking open another can. “Can you pour beer into that thing?” He points his finger to the center of Richard.
Karina looks to Richard, and he nods. Every now and then, when he asks her to, she delivers a syringe full of wine through the PEG tube and wets his lips with the smallest taste, one of the few pleasures he still indulges in. It’s not the same as drinking wine from a glass. It’ll never be the same. But he can still taste a Château Haut-Brion on his tongue. He can still feel its warm infusion in his belly.
Karina attaches the tubing and flushes it with water. She fills a fifty-milliliter syringe with Budweiser and slowly presses on the plunger while everyone watches. Richard belches. Brendan laughs. It tastes like a teenage memory, horrible and wonderful.
“Okay, save some for the toast,” says Mikey. “Karina, you have your wine?”
She picks up her wineglass in
her right hand, holding the syringe of Bud attached to Richard’s stomach in her left. “Ready.”
Tommy and Mikey raise their beer cans. Emily and Karina lift their wineglasses. Brendan raises his Coke.
“To Walt Evans,” says Mikey. “May he rest in peace.”
Rest in peace, Dad.
CHAPTER TWENTY-FIVE
It’s 8:28, four minutes later than last he looked. For the past three days, time has been a fat slug napping on a shady stone. Karina is in New Orleans, joining Elise and her students on their annual pilgrimage to the holy motherland of jazz. Sitting in front of his computer, Richard aims his nose like a conductor’s baton, directing the cursor arrow across the letters of the keyboard, typing the names of various jazz artists in iTunes. He plays a few seconds of Herbie Hancock. Then Oscar Peterson. A few seconds of John Coltrane. He can tolerate Miles Davis for just over a minute. The notes wander without any apparent destination, a lost dog in a field, sniffing and tail wagging, scampering here and there, no one calling it home. The compositions are scribbles, run-on sentences without proper grammar and no punctuation, indulgent explorations in incongruous sound.
He clicks on Thelonious Monk, and his mouth cringes as if tasting something noxious, something too sour or bitter or rotten, and he wishes he could spit the sound out. The saxophone and the trumpet sound like an escalating argument, both sides shrill and unreasonable. He hurries the aim of his nose to the PAUSE button. He can’t take one more second of this assault, this madness, this noise.
For Richard, music is like language. While he doesn’t speak Italian or Chinese, he finds the experience of listening to Italians chatting over cups of espresso to be a melodious pleasure. Chinese, on the other hand, feels like cacophonous machine-gun fire, every word a needle inserted into his spine next to the sound of someone rubbing the surface of a rubber balloon. For Richard, jazz is Chinese.
Or, it’s like abstract expressionism. Richard can look at Number 5 by Jackson Pollock, a supposed masterpiece revered for its artistry and worth millions, and see only unappealing, splattered bullshit, utterly lacking in structure or talent. Jazz is Pollock. Mozart, on the other hand, is Michelangelo, Rembrandt, Picasso, painters who’ve mastered the art of seeing. To look up at the ceiling of the Sistine Chapel is to be with God.
Bach, Chopin, Schumann, these composers have mastered the art of listening. Richard hears Debussy’s “Clair de lune,” and every cell in his body has a broken heart and bare feet dancing in the moonlight. Playing Brahms is communing with God.
Richard doesn’t feel jazz in his body. It doesn’t move through his heart and soul. He doesn’t get it. It’s always been impossible for him to understand what he can’t feel.
While Karina is away, Grace is home, babysitting her father. They’ve been under the same roof for three days, two lines rarely intersecting, alone together. She mostly stays in her room. She says she has a ton of homework, but to call or come get her or step on the call button if he needs anything. So far, he hasn’t needed her for anything other than his last meal of the day and getting hooked up to the BiPAP mask at bedtime. So he hasn’t called for her.
While Grace is here, he’s been waiting for Bill to arrive at nine in the mornings to pee, saving both Richard and Grace the indignity of a daughter pulling down her father’s pants so he can urinate. Two days ago, he asked her if she wanted to watch a movie with him. Any movie. She had statistics, economics, and physics homework and no time for a movie. Yesterday, he asked her if she wanted to go for quick walk. His right leg is too weak and his right foot is too droopy for him to risk going for a walk alone. She said it was too cold outside. Today, he didn’t ask her anything.
It’s now 8:40 p.m. He keeps looking over to the door, expecting to see her. She pokes her head in the den every couple of hours to check on him. He hasn’t seen her since five. Do you need anything? . . . No.
But he does need something from her. He needs things to be right between them before . . . He needs things to be right between them before his circumstances force him into finishing that sentence. For now, not finishing that sentence, not squinting his eyes to bring into focus what’s blurry and waiting for him on the horizon, or even ignoring what is hovering two feet in front of his face, is his only line of defense against this disease. Denial, blunt and dull and shaped more like a spoon than a knife, is the only weapon he’s got.
He’s not sure how to go about making things right with Grace but realizes it probably involves being in the same room. Admitting that he chose piano over her has maybe loosened a few bricks in the wall dividing them, but it’s still standing strong and tall, an imposing, ancient fortress. Karina comes home tomorrow, and then Grace goes back to school until the summer. She might not be back home again before . . .
It’s 8:43, and he’s running out of time.
He thinks about asking Grace to help him with the recording device that Dr. George gave him for banking his voice. He’s done little so far. He and Karina recorded a few simple phrases: I have an itch. I have to use the bathroom. Will you wipe my nose? Will you wipe my eyes? I’m cold. I’m hot. Karina played these back to make sure the device was actually recording, and after hearing what his voice sounded like, he lost all motivation for the project. He wishes he’d gone to Dr. George sooner, while his voice was still robust and full of melody and inflection and personality, while his voice was still his and not this stripped-down, aerated, soulless, robotic monotone. He’d rather listen to free jazz than the sound of his voice. He might as well use the computer-generated speech when the time comes.
It’s 8:51. That time is coming.
But the banking project would give him an easy excuse to need Grace for something. He looks to the door, to the red call button on the floor. He doesn’t call for her. He’s too tired. He hasn’t done a damn thing all day, and he’s exhausted.
It feels later than it is. His room is dark but for the glow of his laptop screen and a sliver of light from the hall intruding through the slant of the cracked door. He gets up, stands at the edge of his room, and listens for signs of Grace. He hears nothing. Restless, he leaves the den and wanders the living room, studying the furniture and decor like a curious museum patron after hours. Or a creepy prowler. The living room is dim, gently illuminated by lights Grace must’ve left on in the kitchen. The cold black night is framed in every window. If Karina were home, she would’ve drawn the shades.
The living room is neat and tidy, everything in its place. It’s too tidy. Sterile. Before he moved out, before Grace left for college, the entire house felt like Grace’s home. Her backpack and clothes and books and papers were strewn about. Her music and phone conversations could be heard throughout the house no matter what room she was in. Her personality and presence loomed large here. But Grace doesn’t live here anymore. Karina does. Other than revealing that the person who lives here plays piano, observing Karina’s home gives little sense of who she is.
But this is her home, her life. Not his. He’s not supposed to be living here anymore.
He visits her piano, the same Baldwin upright they bought used when they first moved to Boston. His eyes travel from one end of the keyboard to the other. From watching and listening to Karina and her students play these past few months, he knows the action of the keys is slow compared to that of his grand, and he imagines the frustrating stickiness within the pads of his paralyzed fingers. For years, he tried to convince Karina to upgrade to a grand piano, but she always refused.
The top sheet on the shelf is Beethoven’s “Für Elise.” One of Karina’s students was mutilating this composition in a lesson last week. When Richard was eleven, “Für Elise” was his favorite piece to play. He hesitates, then sits down at the bench. As his eyes travel the notes, he hears the music in his mind’s ear, and he is eleven again. He’s playing for his mother, and when he finishes, she kisses him on the head and tells him it’s the most beautiful song she’s ever heard.
He reads the notes to this simple, overplay
ed, yet lovely piece, and without trying, he feels it in his body—in his beating heart, in his unmoving fingers that still fondly remember, in his tapping foot. This is music.
He aches to touch the keys. While he can feel the imagined music playing in his body, the experience of participating in its creation and hearing it live resonates in his soul. He tries to remember the last time he played, the feelings coursing through his body and soul as he lived the notes of Ravel’s Piano Concerto for the Left Hand, and he gets only a faded sense of it. He can’t grab on to it. The memory is but a passing ghost. Tears flood his eyes, and he leaves Karina’s piano before he’s reduced to sobbing.
He follows the light into the kitchen. A bowl of lemons is centered on the square table. One of the lemons has gone moldy. He wants to pluck it out and throw it in the trash. He thinks about calling Grace down from her bedroom and asking her to remove the bad lemon but, assuming his diminished voice couldn’t reach her anyway, decides not to bother.
He walks over to the pizza box on the counter, the lid tilted slightly open. He peeks inside. Three pieces left. He inhales the smells of peppers and onions and dough and with a tortured sadness remembers the sensory pleasure of eating, like a lover he’ll never kiss again, a piano he’ll never play again. He imagines the chewiness of the toppings and cheese, the crunchy bite of the crust, the hot temperature of the tangy sauce and salty cheese in his mouth, the rapid responsive action of his grand piano, his hands in Maxine’s thick black hair, his mouth on hers.
Almost dizzy with desire, he notices that he doesn’t imagine Karina’s hair or lips. He tries to remember the last time they kissed, the last time he held her, the last time he got hard thinking about her. He can’t find it. His memories of touching her, wanting her, loving her, feel like yellowed, unlabeled snapshots in someone else’s scrapbook. Too much time has passed.
It’s 9:03.
Stepping away from the pizza box, he approaches Grace’s coffee mug from this morning, next to the sink. He bends over, leans his face into the mug, and inhales whatever he can draw out of the sticky, bittersweet hoop of desiccated coffee at the bottom. He exhales. Nirvana. And pure hell. Desperate, he extends his tongue into the mug, hoping to lick the dry ring, but his tongue isn’t long enough and the mug is too deep. He gives up.