Every Note Played

by Lisa Genova

  Elise pauses several steps ahead and turns around. “Roz from the Conservatory called. It was nice of her to remember me. She organized a bunch of the staff who knew him from his teaching days, and we all went over. I felt like it was the decent thing to do.”

  Begrudgingly satisfied with this explanation and fueled by curiosity, Karina starts up again. The two women walk side by side.

  “So how is he?” Karina asks, a reluctant toe edging into muddy water.

  “His arms are completely paralyzed. That was upsetting to actually see.”

  The previously dormant pit in Karina’s stomach, planted months ago, sprouts roots. This is really happening. Aside from not being able to open the bottle of wine, he’d looked and acted perfectly normal when she last saw him in July. She’d been holding on to the possibility that his diagnosis was a rumor or a mistake. She still hates him, but palpably less than she did last year, and hasn’t wished him dead since before the divorce. She wouldn’t wish ALS on anyone, not even Richard. She kept waiting to see a correction in the newspaper, his tour back on, that the reports of his imminent death had been greatly exaggerated.

  “I’d planned on giving him the stink eye for you, but his arms were just hanging off his body like dead branches, and there was his piano in the room with all of us trying to pretend it wasn’t there. None of us mentioned it. It was too sad.”

  Richard without the piano. A fish without water. A planet without a sun.

  “How did he seem about it?”

  “His spirits were good. He was happy to see us all. But you could tell he was trying really hard to be positive, like he was performing.”

  They continue walking in silence, and soon the silence fills with sound—the muffled steps of their sneakers on the dirt path, softened by a bed of brown pine needles and then the crunching of dry, brown-paper-bag oak leaves; Elise sniffling; the huffing of their exhales.

  “Does Grace know?” asks Elise.

  “Not unless someone else told her. I would know if she knew. No, honestly, I wasn’t even a hundred percent sure he had it until this very conversation.”

  Grace. She’s in the middle of midterms. It would be cruel to break this news to her right now. She might get distracted and fail her exams. And why hasn’t Richard told her? Of course he hasn’t told her.

  “Maybe I should go see him again,” says Karina.

  “That’s your Catholic guilt talking.”

  “No.”

  “Remember what happened last time.”

  “I know.”

  “Seeing him is not good for you.”

  Richard always seemed invincible to Karina, as if he could conquer anything, and he did. He was an unstoppable force that awed and intimidated her and, at times when she was most vulnerable, trampled her. Now he’s the vulnerable one, and she can’t help but wonder what it would feel like to sit at the other end of the table.

  “Yeah, but—”

  “What are you hoping for? Tuesdays with Morrie?”

  “I don’t know.”

  “He’s still Richard, honey.”

  “Believe me, I know who he is.”

  “Just don’t get hurt.”

  “I won’t,” Karina says, her voice utterly void of conviction.

  CHAPTER NINE

  Karina is carrying a foil-covered plate of pierogi in one hand, a $50 bottle of red wine in the other, and several months of unrelenting guilt down Commonwealth Avenue. It’s a gunmetal-gray November morning, raining hard, and she has no hands for an umbrella and four more blocks. She picks up her pace, almost running, and the wind whips the hood off her head. Damn it. She has no available hand to pull it back on.

  The weather hits her like an assault, and since she’s the only pedestrian in sight, the attack feels personal. Raindrops pummel the aluminum foil like machine-gun fire. The bitter-cold wind stings her face raw. Rain soaks through her socks, pants, and hair, chilling her skin like a punishment. She blames Richard. She wouldn’t be subjected to this misery if he hadn’t provoked her. Of course, she reacted. Just as she always did. It’s as if she were programmed to respond to him, an unthinking and immediate ouch to his pinch.

  It was already raining when she left the safety of her house, and she knew she wouldn’t likely find a parking space within four blocks. She could’ve waited another day. Tomorrow’s weather forecast is cold but clear. But she made the pierogi last night, and she needs to make at least this one thing between Richard and her right, clean up her side of the street, deliver her penance, and be done. Carpe diem. Weather be damned.

  Focused on the numbers on the door and the promise of shelter, she barely registers the FOR SALE sign planted in the minuscule square patch of front lawn as she races past it. Out of breath and shoulders hugging her ears at the top of the stairs, she presses the doorbell and waits. Her hands, wet and lacking circulation and painfully cold, are aching to let go of her peace offerings and find comfort inside her coat pockets. Without a greeting or question as to who’s there, she’s buzzed inside.

  When she reaches Richard’s unit, the door is ajar. She knocks as she edges the door open a bit more to be heard. “Hello?”

  “Come on in!” a man’s voice, not Richard’s, hollers from somewhere inside. “We’ll be done in a minute!”

  Karina enters, steps out of her shoes at the door, and returns to the kitchen, the scene of the crime. The lights are on. The room smells of coffee. The kitchen island and counters are wiped clean and are bare but for three glasses filled to the top with what looks to be vanilla milk shake, a tall straw standing erect in each. There’s no noise, no sign of anyone. She sets the wine and pierogi down on the counter, removes her raincoat, and drapes it over one of the barstools. She waits, not knowing whether to sit or stand, growing increasingly uneasy. Maybe she should find a piece of paper and pen, write a note, and leave.

  Her attention wanders to the living room and screeches to a sudden stop, stunned. A wheelchair. A wheelchair unlike any other she’s ever seen. The tipped headrest and seat resemble a dentist’s chair. The two strapped footrests remind her of the stirrups on a gynecologist’s exam table. There are six wheels and shock absorbers and a joystick affixed to one of the arms. This is not a chair for a broken leg. It looks futuristic and barbaric. Cold rainwater drains from her hairline, trickling down her neck. She shivers.

  The chair is positioned next to Richard’s piano. She looks again, and the piano is as unfamiliar and formidable as the wheelchair. An inner chill more penetrating than the rain on her skin drips down her spine. The key cover is shut. The music rack is bare. The bench is pushed in. She approaches Richard’s Steinway as if she were trespassing on sacred ground, her mind still disbelieving the incongruity of the sight before her. She hesitates, gathering courage, then slides her index finger along its lid, clearing a thick layer of fine dust, revealing a snail trail of the piano’s glossy black finish.

  “Hi.”

  She spins around, heart pounding, as if she were a criminal caught in an illicit act. Richard is standing behind a bald man with black-rimmed glasses.

  “I’m Bill.” He wields an energetic wide smile, extending his hand to hers. “Richard’s home health aide.”

  “Karina.” She shakes his hand.

  “Okay, well, that’s it for me. Gotta run,” Bill says. “Melanie will be here for lunch, Rob or Kevin for dinner and bed. You’ve got three shakes in the kitchen. You all good?”

  Richard nods. Bill checks something on Richard’s iPhone, worn on his chest and attached to a lanyard hung around his neck like a conference badge.

  “Okay, my friend. Call us if you need us. See you in the morning.”

  Richard stares at Karina as Bill leaves and says nothing. His hair is wet, combed, and parted too severely and neatly to the side. He looks like a young boy on school-picture day. He’s clean shaven, his face gaunt. His black sweater and jeans hang on him, long and baggy, as if they belonged to a big brother or were borrowed from Bill. Unsettled by the whee
lchair, the abandoned piano, Richard’s emaciated appearance and prolonged silence, Karina forgets why she’s here and begins to wonder if he can speak at all.

  He notices her apology on the counter.

  “Pierogi,” she says. “I’m sure the wine is below your standards, but it’s the thought that counts.”

  “Thank you.”

  He walks into the kitchen, and that’s when she notices. His arms don’t swing. They sag from his shoulders, still, lifeless. And both hands look wrong, inhuman. The fingers of his right hand are stick straight, flattened. The other hand is fixed in a grotesquely curled claw. He positions himself in front of one of the milk shakes, lowers his head to the straw, and sips.

  His arms are completely paralyzed. He watches her absorb this information. She smiles, trying to mask her real reaction, a trench coat wrapped around her naked horror.

  “Want to have a seat?” He returns to the living room. “I don’t recommend that one.” He nods at the wheelchair.

  The melody in his voice is gone. Every syllable is the same note, softer in volume, and slow, as if each monotone word is being dredged through molasses.

  “You can still walk,” she says, confused.

  “Ah. That’s my future. You have to order the chair before you need it or I guess you end up getting it six months after you die. I told Bill they might as well deliver my coffin, too.”

  He laughs, but the sound of his amusement quickly turns into something else, a runaway choking wheeze, sounding nasty and villainous, gripping him tighter and tighter around the throat as if it aims to kill him. She sits a few feet in front of him, watching, a silent bystander, holding her own breath and strangely paralyzed, not knowing what to do. His final wheeze ejaculates a gob of spittle that lands on the face of his iPhone. She pretends not to notice as it oozes down the screen.

  She looks away, over her shoulder, back at the piano and the wheelchair. Richard’s past and future. She thinks of all the time he used to fill learning, practicing, memorizing, perfecting—nine to ten hours and more a day. She looks back at Richard, at his useless hands. What on earth does he do all day now?

  “Once you need that, how will you ever leave your apartment?” He’s on the fourth floor of a 150-year-old brownstone. No elevators. No ramps.

  “I won’t.”

  He’ll be trapped inside this apartment, locked inside his body, a Russian nesting doll. She suddenly remembers the FOR SALE sign out front.

  “So you’re moving.”

  “Trying. I can’t afford a new place until this one sells. Even to rent. Keeping me alive is already an expensive project. Might not be worth the investment. Don’t expect any more alimony checks.”

  “No. Of course.”

  She goes silent. The checking-account balance, her meager piano-lesson income, the monthly bills. She begins doing math, mostly subtraction, equations that scare her and can’t be entirely solved right now in her head.

  “How’s Grace?”

  “Richard, she doesn’t know. She doesn’t know any of this. I didn’t realize you would change so much so fast. You have to tell her what’s going on.”

  “I know. I was going to. Many times. I just kept putting it off. Then my voice. I sound like a robot. I don’t want to call and scare her.”

  “Write her an email.” Karina’s stomach cringes, and her eyes widen, embarrassed. His hands. He can’t type.

  “I have speech-recognition software and toes. I can still email. But she doesn’t return my emails about school and the weather. I couldn’t stand it if I wrote her about this and she didn’t reply.”

  Given what Grace knows and doesn’t know, it’s not surprising she took sides. Loyal to her mother, Grace hasn’t spoken to her father in over a year. Karina can’t help but enjoy the victory in this allegiance and has done nothing to encourage an end to his daughter’s cold war. Karina looks down at the floor, at her damp socks.

  “I didn’t want to drop this bomb on her while she was at school. I thought it could wait—”

  “For the coffin to get here?” Karina asks, transforming her shame to blame, an alchemy she’s long mastered.

  “Until she was home for Thanksgiving. To tell her in person. And I know this is dumb, but I think I thought if I didn’t tell people I had ALS, maybe I really didn’t have it.”

  Four months ago, she couldn’t tell if he had ALS by looking at him. But now, it’s unmistakable. How could he be in such crazy denial? Her heart tightens as she imagines Grace absorbing the news, this view of her father for the first time, this threat to everyone’s well-being.

  “She’s not coming home for Thanksgiving. She’s got a boyfriend. Matt. His parents live in Chicago. She’s staying out there for the long weekend. We won’t see her until Christmas.”

  Just over a month away. Only a few weeks. Richard looks past Karina to the wheelchair behind her. His eyes well up, and he blinks repeatedly, working hard to keep his tears contained.

  “Can you tell her for me?”

  She considers his request and him, sitting opposite her, so vulnerable, a fragile bird with no wings. He’s lost his arms. He’s losing his voice. He’s going to lose his legs. His life. She should pity him, this flightless, dying bird. But she doesn’t. He’s not a bird. He’s Richard. She feels her posture harden, a familiar numbness.

  “No.”

  Her reply is cruel, but she can find no other, and the thickening silence between them is pressing on her walled-off heart, begging her to reconsider. She crosses her arms, steeling her resolve. She feels his eyes on her as she stands.

  “I have to go.”

  “Okay. Before you do?”

  She looks at him, trying not to see him.

  “Would you scratch the top of my head? Please?”

  She takes a breath, crosses the impossible distance between them, sits on the couch next to him, and scratches his head.

  “Oh my God, thank you. A little harder. All over, please.”

  She uses both hands. Her nails are unmanicured, but they’re hard and strong, and she rakes them all over his head, messing up his neatly combed schoolboy hairstyle. After a good scrubbing, she stops and checks on him. His eyes are closed, and a deeply satisfied closed-lipped smile is stretched across his thin face. It’s been a long time since she’s touched him, since she gave him any kind of pleasure. Without her permission, a sweet memory massages an unhardened piece of her heart.

  “I have to go now. You okay?” She stands.

  Richard opens his eyes. They’re glossy. He blinks, and a couple of tears escape, spilling down his face. He can’t wipe them.

  “I’m okay.”

  She hesitates but then grabs her raincoat, slips into her wet shoes, and leaves without another word. As she’s descending the stairs, she thinks of the many times she’s left Richard—walking away in the middle of innumerable arguments; storming out in the middle of dinner, deserting him in a restaurant, leaving him to take a cab home alone; the last time she was here, marching out of his apartment after breaking his bottle of wine; leaving the courthouse on the day the judge declared their marriage irretrievably broken, the dissolution no-fault, the divorce absolute. As she walks out the front door, fixing her hood onto her head, shoving her hands into the cozy safety of her coat pockets, she remembers walking down the courthouse steps, scared that it was she who was irretrievably broken, knowing there was plenty of fault to this failure, and daring to admit that she might be as much to blame for it all as he was.

  CHAPTER TEN

  Richard closes his eyes against the muted morning light, wishing he could fall back to sleep, knowing he can’t. He used to sleep through the night without waking, oblivious to the stirrings of his wife or whoever might be next to him, deaf to car alarms and police sirens and phone alerts. He used to sleep for six to seven hours straight every night, lifting gently out of slumber into consciousness each morning with no memory of dreams or thoughts beyond shutting off the bedside light. He turns his head to see the tim
e. He just spent eleven hours in bed, and he’s exhausted. He doesn’t sleep well anymore.

  With two lifeless arms, he’s essentially stuck on his back all night. He can rock himself to one side, but it’s risky. The last time he did this was a few weeks ago. His right arm became trapped at a painful angle under his torso, cutting off the circulation, and he had a hell of a time freeing it.

  And he can’t risk beaching himself on his stomach. Because his abdominal muscles have weakened, he’s not able to draw in enough air when lying flat either prone or supine. Propped up on three pillows, he sleeps with his torso angled upright so that gravity can assist him with breathing. When three pillows and gravity aren’t enough, the solution won’t be four pillows.

  His pulmonologist says Richard will need a BiPAP machine likely within the next month. It’s already been ordered for him. He’ll have to wear a mask strapped over his nose and mouth, and pressurized air will be forced in and out of his lungs all night long. His pulmonologist says it’s no big deal. The BiPAP is noninvasive. Chronic snorers with sleep apnea use a similar machine all the time. But to Richard, the BiPAP is a very big deal. And everything he needs feels invasive.

  The introduction of each new medicine, adaptive device, specialist, and piece of equipment comes with a corresponding loss of function and independence. The new medications for drooling and depression, the new voice-to-text phone app, the ankle foot orthotic he’s supposed to wear to keep his right foot from dropping, the feeding tube he’ll soon need, the power wheelchair waiting for him in the living room, the BiPAP already ordered. Each one is his signature on the dotted line of a contract agreeing to the next phase of ALS. He’s standing in a lake of dense quicksand, and every offer of assistance is a block of concrete placed atop his head, sinking him irrevocably deeper.

  And although Richard can’t bear to talk about it, he’s keenly aware of the last concrete block in the queue. When his diaphragm and abdominal muscles quit their jobs entirely and he can’t produce any respiratory pressure on his own, the final offering from his multidisciplinary medical team will be mechanical ventilation through a tracheostomy tube. Twenty-four/seven life support. Up to his eyeballs in quicksand, he’ll be asked to blink once if he wants to live.