Every Note Played

by Lisa Genova

Her carefully buried deception peeks out from its hiding space for the briefest moment, long enough for shame to seep through the walls of her stomach, sickening her. She drains her martini, distracting her tortured, guilty mind with the cozy warmth of booze.

  When Grace turned five and went to kindergarten, Karina would have the time to pursue jazz. That was the plan. But then Grace went to school, and Karina’s excuse migrated back to Richard. She discovered charges for an expensive dinner and drinks for two on his credit-card bill; salacious text messages from some woman named Rosa on his phone; a pair of black lace panties in his suitcase, not a gift for her. At first, these betrayals shattered Karina’s heart. She felt stunned, gutted, humiliated, dishonored. She wept and raged and threatened divorce. And then, after a few days of wild emotion, she would feel wrung out, calm and strangely satisfied. Over time, her heart hardened to it all. She almost craved the detective work, the thrill of finding the next damning text message, the momentary drama it awakened in her and ultimately, the narrative it supplied.

  Grace was in first grade, eighth grade, a sophomore in high school, and Karina painted herself the victim, trapped in a bad marriage by the rules of a church she no longer believed in but still obeyed and the barbed-wire reasons of her own making. She carefully constructed her life, creating a predictable stability in her safe career as a teacher, teaching students to play classical piano in the private confines of her suburban living room, where her students have always been too young, unformed, and musically naïve to question her, stretch her, or push her outside her comfort zone.

  And she could blame Richard and his affairs for holding her back. He was wrong and bad, and she was right and good, and she could resent him for her unfulfilled dreams of playing jazz, and this was the perfect excuse, the brilliant smoke screen deflecting anyone who might inspect the situation for the truth. The truth is, she was terrified of failing, of not making it, of never being as recognized and loved as an artist as Richard is.

  But then she got divorced and Grace went to college, her excuses literally out the door. With seemingly no one left to blame, she pointed her finger at the hands of time. Too much had passed. Her chance had passed. It was too late.

  She watches Alexander on the stage, new to the jazz scene, about her age, and that last pin falls. She can now see that every collapsed excuse she abided to like God’s commandments existed only in her mind. Her unfulfilled life has always been a prison of her own making, the thoughts she chose and believed, the fear and blame, paralyzing her in her unhappiness, telling her that her dreams were too big, too impractical, too unlikely, too hard to achieve, that she didn’t deserve them, that she shouldn’t want them, that she didn’t need them. These dreams of playing jazz piano were for someone else, someone like Alexander Lynch. Not for her.

  As she listens to Alexander play, she steps out of the carefully constructed, now-unlocked cage in her mind. She hears him messing with the melody, accenting the ascending chords and varying the phrasing, and she feels the exuberant curiosity in his improvisation, searching for something new, unafraid, and his freedom becomes hers. She sees what’s possible for her if she dares to claim it.

  The trio finish their final piece of the night, stand, and bow. The audience is on its feet, applauding, begging for more as the musicians humbly exit the stage. Karina wipes the tears from her eyes in between claps, feeling breathless, cracked open, pulsing with desire, and, although she’s not quite sure how, ready to live.

  CHAPTER TWENTY-SEVEN

  Richard wakes from having dozed off, parked upright in his wheelchair in front of the TV, wishing he could be reclined. Although the TV has been on since this morning when Bill set him up here, he stopped watching it at least a couple of hours ago. His heavy head has tipped down, chin to chest, and rolled right, and he doesn’t have the neck-muscle strength to correct it. His towel bib has fallen off his chest, and the front of his shirt is soaked with drool. His eyeballs are still tired from straining to look up and left to see the TV. So he stares at the floor, where his eyes and head are pointed, and listens to Judge Judy, surrendering to what is.

  He’s in the Maserati of power wheelchairs. Front-wheel drive with two motors, it’s tricked out with mag wheels, eight-inch casters, a tilt-in-space reclining feature, and a hand-operated joystick that comes standard with this model. But because he has no hands, he has no way to control it. He ordered it so long ago, when he still had the use of his left hand, when he could still play the piano, when he could still hope that he’d never actually need the chair. He’s in the driver’s seat of a sexy sports car, unable to place his hands on the steering wheel or step his foot on the gas, forever parked in the garage.

  There are tech devices that would allow him to control the wheelchair with his chin or tongue or even his breath, but Karina and Richard haven’t ordered anything. The activation energy is a mountain precipice—too many insurance forms, the astronomical cost despite any coverage, the wait to receive the device. It’s probably hard for anyone associated with Richard to invest time or money in his ability to move his chin or tongue. How much longer will he be able to breathe? Ordering a wheelchair-operating device powered by breath begs an answer to that question, and Richard would rather not ask it. So he’s trapped wherever someone parks him, mostly here in front of the TV or in the living room. He can’t leave the house until the ramp is completed because his chair doesn’t fit through the door to the garage.

  For some absurd reason, the loss of his legs took him and Karina by surprise. It shouldn’t have. Bill and the other home health aides from Caring Health, his physical therapist, Kathy DeVillo, and his neurologist all told them, warned them, practically begged them to build the ramp sooner rather than later. Don’t wait. They both blew it off. Richard truly believed he might never need the damn chair. He’d been wearing the ankle foot orthotic on his right foot quite comfortably for so long, and his left leg seemed to be in good shape. He formulated his own highly unscientific, clinically unproven theory that the disease had arrested, rendered permanently dormant in his legs, and threw his faith into this theory like a religious zealot. He would never lose his legs. Amen and hallelujah.

  Shortly after ALS severed his right leg from his control, his left leg threw up its white flag. Paralysis settled in rapidly, as if someone had pulled the stopper at his ankle and all the sand came pouring out. Sitting in his wheelchair, staring at the floor and unable to leave the house, it’s clear now. No part of him is safe from this disease.

  He hoped they wouldn’t have to spend any money on an unwanted construction project, an ugly, utilitarian ramp extending from the front door to the driveway, announcing his handicap to the world. Thankfully, his condo finally sold last week, so he can afford the ramp. He’d much rather leave that money to Grace.

  So here he sits, Mr. Potato Head without arms or legs, a bobblehead on a breathing torso. His neck is too weak to hold his head up reliably, especially later in the day—making use of the Head Mouse, even when he’s wearing a neck collar, an exercise in frustrating madness, so he’s disconnected from his computer until they get the Tobii eye-tracking-technology device. It’s been ordered. He’s down to 120 pounds from 170, physically disappearing, and yet he’s taking up more and more space—this wheelchair, the hospital bed, the BiPAP machine, the shower chair, the Hoyer lift that should arrive any day now.

  Transferring him from the bed into the chair in the morning and from the chair into bed in the evening is a massive chore that requires great strength and trained technique. Despite how slight and fragile his mass is, he’s deadweight, like a sleeping child. Karina can’t do it. Bill has been coming for two shifts since Richard lost his legs, morning and evening, using all his muscle and height and a gait belt to lift Richard’s body safely from point A to point B. The Hoyer lift, which looks like a cross between an exercise machine and a hammock swing, will make it possible for anyone to safely move him in and out of bed.

  He hears the doorbell ring. Just weeks ago
, this might’ve been the sound of him stepping on the call button taped to the floor by his bed, but now, it can only be the actual doorbell at the front door. He hears men’s voices and the sound of something being rolled into the living room. It must be the lift.

  A few minutes later, Bill’s legs and feet appear before Richard.

  “Hey, Ricardo, let’s get you out here. Karina has something for you.” Bill says this with unbridled exuberance, like a parent about to present a small child with a special gift. Oh, goody! A Hoyer lift! Just want I’ve always wanted!

  Bill rights Richard’s head back into position against the headrest, and an enormous relief washes through Richard like warm water. Bill wheels him out into the living room. Richard stares at a grand piano in front of the bay windows facing the street where the couch should be. Karina is beaming.

  “Wha?”

  “I saved it,” says Karina.

  “Is-tha-mi?”

  “I couldn’t let someone else own your piano.”

  He can’t believe she did this. It’s incredibly thoughtful and sweet and well-intentioned, but seeing his piano again, after he’d already said good-bye and made peace with never seeing or touching or hearing it again, turns him inside out, as if he’s just unexpectedly bumped into an ex-lover in the living room, still not over her. He’s all emotion and no words, choked up.

  Karina and Bill stare at him, expectant, hoping for joy. He wants to give it to them, searching for a way. He looks at his piano, his beloved, from across the room. He can’t bear for them both to be paralyzed, still, silenced.

  “Wi-you play-fo-me?”

  “It’ll need to be tuned.”

  “Tha-so-kay.”

  Karina hesitates. She’s never played his piano. His piano was his. He smiles and sends her a long blink, his version of permission and please. She acquiesces, sits at the bench, hands poised over the keys, and pauses.

  She twists around to face him. “What do you want me to play?”

  He thinks, his favorites all raising their hands emphatically like eager students who know the answer. Mozart, Beethoven, Chopin, Debussy, Liszt. Pick me! Pick me! Too many choices crowd his head. Karina, sitting at his piano, waits for an answer. She’s waiting to play. She’s been waiting for twenty years.

  “Play-me soh-jazz.”

  This time, Karina smiles and slow blinks, her version of a nod, a thank-you, and the energy in her gesture is passed between them, a moment of invisible yet palpable connection. She breaks the spell, thinking now, deciding what to play, her eyes scanning upward, as if reading her own mind.

  She grins. “I’ll do ‘Somewhere over the Rainbow.’ Bill, you want to sing?”

  “Do happy little bluebirds fly? Hell yeah, I’m singing.”

  Bill scooches next to Karina on Richard’s bench. Karina begins to play, setting the mood in a prelude before the lyrics begin. Richard expected her rendition to be loungy, predictably ragtime, upbeat and swingy, but she slows it all down instead, dwelling on the notes, adding interesting chords and embellishments, and he’s genuinely surprised. Impressed. Enjoying it. She’s into the melody now, and Bill is singing. Their rendition is restrained and romantic. It evokes a gentle sadness, a fond memory of a lost love. It’s a dreamy lullaby, easily the most beautiful song Bill has ever sung.

  Richard listens to Karina play and Bill sing, and instead of feeling grief stricken or jealous that he’ll never play his piano again, he feels strangely happy. He’s setting his piano free, letting it go, sending it off on its next journey without him. Then, as Karina plays the final phrasings and his heart moves with the notes, it occurs to him that it’s not his piano he’s letting go of, setting free.

  It’s Karina.

  CHAPTER TWENTY-EIGHT

  The Hoyer lift still hasn’t been delivered, and until it gets here, Bill is the lift. He’s singing Madonna’s “Like a Prayer” while securing a gait belt around Richard’s legs, just above the ankle. It’s evening, and Bill has already brushed Richard’s teeth and washed his face. Even though Richard won’t go to sleep for another five hours, it’s time to get him from the wheelchair to the bed. Richard is Bill’s last patient of his shift, and Bill is Richard’s last hired help of the day, and Karina can’t get him out of the chair. So to bed he goes.

  Bill weaves a second gait belt around Richard’s torso and secures it snug around him while Karina looks on. Bill grabs the suction wand from the rolling cart next to him, flicks the machine on, and vacuums out the saliva pooled in Richard’s mouth. Bill has learned through experience to do this prior to moving Richard, otherwise the puddle of saliva waiting in Richard’s mouth tips forward when he’s vertical, spilling out and onto Bill. His job is not for the squeamish. He then fits a soft cervical collar around Richard’s reclined neck so his head won’t flop forward. He arranges Richard’s socked, belted feet parallel on the pivot disc, a human-size lazy Susan placed at the base of his chair, adjacent to his destination, the bed. It takes a grown man and all this time and equipment to move him a few inches. Bill squats in front of Richard like an Olympic skier.

  “One, two, three.”

  Bill pulls on the gait belt around Richard’s chest with his right hand while lifting him under the shoulder with his left, and in a forceful snap, Richard is standing on his paralyzed legs.

  The extensor muscles in his legs are spastic and rigid, making it possible for him to bear his own weight. While completely unresponsive to any voluntary command, like a child’s plastic action-hero figure, he can be stood up if balanced properly. Bill lifts and rests Richard’s arms atop each of Bill’s shoulders to keep them from hanging down and pulling painfully on Richard’s shoulder sockets. Bill’s biceps are positioned under Richard’s armpits, his hands clasped around Richard’s back. Richard stands slightly taller, but they’re pretty much eye to eye.

  “My friend David would be so jealy if he knew I got to slow dance with you like this every night. He has such a crush on you.”

  Richard raises his eyebrows, requesting more information.

  “He saw you play at BSO three years ago. I almost went with him. Isn’t that funny? I almost knew you before I knew you.”

  The belt around the bottom of Richard’s legs keeps his ankles from rolling out. Without it, he’d be standing on top of his anklebones instead of the bottom of his feet. Bill keeps him balanced on his feet for at a least a minute before moving him along, somehow intuiting how delicious this feels, to be stretched out and vertical, his bones stacked and bearing weight, like finally standing after a transatlantic flight in a cramped plane seat. Richard’s been sitting in this chair, in the same position, for eight hours. Richard sighs, enjoying the sweet relief of being an erect structure, visiting the memory of being an upright man.

  Their slow dance ends when Bill spins Richard ninety degrees on the pivot disc, so that his butt is now up against the bed. Using the gait belt around Richard’s middle, Bill lowers him carefully onto the mattress. As always, Bill sticks the landing.

  “I still think I could do that,” says Karina.

  “I’ve been doing this a long time, honey. I make it look a lot easier than it is. Believe me. You don’t want to drop him. You could both get hurt. Wait for the Hoyer. It should be here any day.”

  Bill tugs on each side of the slide sheet, squaring Richard’s body in the center of the bed, and arranges Richard’s arms and legs like flowers in a vase. Reaching over to the bedside table, Bill grabs what looks like a one-liter clear-plastic water bottle. He reaches under Richard’s boxer shorts, pulls out his penis, inserts it into the bottle, and waits a few seconds. As usual, nothing happens. The waiting was just a courtesy. Bill then pushes down on Richard’s abdomen with the heel of his hand, pressing firmly on his bladder over and over, as if he were pumping water from a well. It works, and the bottle slowly fills with urine.

  Karina looks away, trying to offer a sense of privacy, a strange and futile gesture. Richard’s body parts are in varying states of nudity and bei
ng handled all day long. He is showered, toileted, wiped, washed, dressed, and undressed. His body is simply another task to complete, a job to do. His naked body is treated neutrally by every home health aide, every visiting nurse and physical therapist, a thin layer of a latex glove between his skin and actual contact with another human being. His is just another penis, just another saggy ass, just another patient’s decrepit body. So Karina doesn’t need to look away. He’s just another ex-husband with ALS.

  When his bladder is emptied, Bill tucks Richard’s penis back into his boxers and leaves the den to wash the bottle in the bathroom. Now Karina takes over. She lifts Richard’s T-shirt, attaches a syringe of water to his MIC-KEY button, and flushes the line. Normally refreshing, the water feels alarmingly cold in his belly. She then switches to a pouch of Liquid Gold.

  “Okay you two.” Bill is now wearing his hat and coat. “I’m off like a slutty prom dress.” He gives Karina a one-armed hug and a kiss on the cheek. “Be good,” he says to Richard. “See you tomorrow.”

  “Thank you, Bill,” says Karina.

  Richard slow-blinks. It’s the end of the day. He’s too tired to form words.

  Karina presses slowly and steadily on the syringe plunger, delivering Richard’s liquid dinner into this stomach. The entire meal takes about a half hour, and they usually have the TV on to keep them company, occupied, and safely distracted, but today, the TV is off. Bill’s singing must’ve snagged a circuit in Karina’s brain. She’s humming “Like a Prayer” while she stares vaguely at the wall, a slight smile on her lips. He wonders what she’s thinking about.

  She’s had a lightness about her since she returned from New Orleans. He hears her singing pop songs while cooking in the kitchen and noodling jazz riffs on her piano in the mornings. He’s been catching her face enjoying distant daydreams. Her energy has changed. Her presence feels less heavy, less oppressive, happier, hopeful even, and while he can’t put his paralyzed finger on the reason for it, this unexplained shift in her has provoked a corresponding shift in him. He watches her face, and he recognizes her again, the woman he fell in love with so long ago. She’s feeding him, taking care of him, and what he’d been selfishly viewing as an act of martyrdom or duty, he suddenly sees as an act of love.