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, overplayed, 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.
The phone numbers for Caring Health, his neurologist, and Bill’s cell are written on a piece of paper and held by a magnet to the refrigerator. Next to this is a photograph of Grace and Karina at Grace’s high school graduation. They’re both wearing black, both beaming. Grace has her mother’s smile.
There are no other photographs. No other smiling children on what used to be his refrigerator. The son he always wanted. A sister for Grace. All those years trying to get Karina pregnant, believing in her doctor’s appointments, jerking off into plastic cups, hoping. None of it was real. Maybe this is why he can’t remember loving her.
All that time wasted.
It’s 9:06.
With nothing more to explore, he’s walking back to the den when he’s struck with the sudden, out-of-body, slow-motion realization that he’s falling. He went to step right, but his leg never responded. Something in the interplay between neurons and muscles broke off. Something didn’t fire or listen or land. Something let go, unplugged, and the command to walk fizzled out, the connection severed. In the split second before he hits the floor, he’s aware that he cannot break his fall and thinks to turn his head, but not soon enough. His chin and nose take the brunt of the impact.
Warm blood drains down his right nostril. He can taste its metallic saltiness in his mouth. He registers the pain, throbbing and sharp, mostly at the bridge of his nose, between his eyes. Internally, he scans his limbs, trying to discern if anything is broken. He can’t seem to find his right leg. A realization sinks in like liquid concrete funneling into his body, transforming him into immovable stone. Nothing is broken, but he’s not getting up. His right leg is gone, consumed by ALS. As he lies facedown on the kitchen floor, he knows he’ll never walk again.
He tries to yell for Grace, but he can barely get enough air into his lungs in this position to breathe, never mind produce loud sound. He lifts his head and tries again.
“Graaa.”
He lowers his head, resting his right cheek on the cold tile floor. A puddle of drool mingled with blood pools beneath his chin. He’s not sure he has the strength to lift his head again. He finds the only part of his body still available to him. His left foot. He lifts and drops it over and over, banging his wool-slippered foot against the floor like a foreboding, muffled drumbeat.
Several minutes pass. Tired, he stops tapping his foot. Panic wants him now. It forms a fist in his stomach, its claw reaching for his throat. He won’t be able to breathe if panic takes him. Grace. She comes down every night at ten for his last feeding and to hook him up to the BiPAP machine. What time is it? It won’t be long now. He has to fight against the panic and keep breathing.
He’s lost in the feeble yet steady rhythm of his inhales and has no sense of how much time has passed when he hears Grace’s footsteps.
“Oh my God!”
He opens his eyes, and Grace appears over him like an angel.
“What happened?”
He doesn’t expend his limited energy to state the obvious.
“Okay, I’m calling 911.”
“No,” he whispers. “Please-don.”
“Why? I’ll call Bill or someone at Caring Health.”
She looks over at the refrigerator, at the phone numbers on the door.
“No. Is-late.”
“What if you broke something?”
“I-din.”
“Your face is all bloody. I think you broke your nose.”
“There-goes-my mo-de-ling ca-reer.”
“I have to roll you over then.”
His head is turned to the left. She places a hand on his left shoulder and hip and pulls on him carefully but with great effort. He assists as much as he can with his left foot, and she finally manages to turn him onto his back. She grabs a dish towel from the counter, runs it under the tap, crouches over him, and wipes his mouth, cheek, and neck. As she scrubs the cloth too roughly against his skin, working to loosen the blood that has dried and crusted on his face, cold water drips down his neck, soaking his back. She’s gentler around his nose.
She stands up and studies him now. He studies her, too, and can’t tell if she’s worried, disgusted, or scared. Probably all of the above.
“I’m not strong enough to get you into bed.”
“Thas o-kay. I-ca slee-here.”
She folds her arms over her chest.
“I’ll be right back.”
He sees the light flick on in the den, and a few moments later, he hears the wheels of the BiPAP cart rolling toward him. She wiggles three pillows under his head, adjusts his arms to match their position on either side of his body, and drapes his bed comforter over him. She leaves again. This time, he hears her footsteps running up the stairs. She returns with her pillow, a blanket, and her blue-and-white gingham comforter.
“I’ll sleep next to you. In case something happens.”
She plugs in the humidifier and the BiPAP, turns them on, and checks the settings. He doesn’t bother to mention that she’s forgotten to feed him. He’s not hungry. She holds the mask in her hand, and he’s afraid of how much it’s going to hurt when pressed against the bridge of his nose.
“I’m sorry I didn’t hear you right away.”
“Don-be-sor-ry. I’m-the-one who-sor-ry.”
“For what?”
He’s sorry he didn’t give enough of his time to her. He’s sorry he’s running out of it. He’s afraid he doesn’t have much left. He’s sorry he wasn’t a better father to her. He’s sorry she didn’t feel loved by him.
It’s now or never.
“Ev-er-y thin. I-love-you-Grace. I’m-so sor-ry.”
She closes her eyes, and a gentle close-lipped smile settles on her mouth. She opens her eyes, and tears stream down her beautiful face. She doesn’t wipe them.
“I love you, too, Dad.”
She fits the BiPAP mask over his face, and he endures the screaming pain between his eyes as air flows in and out of his lungs. For the first time in as long as he can remember, he feels peace when he breathes.