Every Note Played

by Lisa Genova

  “That’s very unlikely. I see about three hundred people in your position every year. And in the twelve years I’ve been doing this, I’ve only seen that happen one time.”

  So there’s a chance. But it’s remote. And Kathy has had this horrific conversation over three thousand times. Richard wants to cry for both of them.

  “If you were us, what would you do?”

  “I’m not you, and even though I’m around it every day, I’ll never know what it’s like to have ALS. I don’t know your finances or your relationship, so I really can’t answer that. I will say this. If you choose the trach, every six months I’ll ask you, ‘When is enough enough for you?’ In our experience, patients who go on the vent typically get pneumonia after pneumonia. The disease doesn’t stop. Eye movements can be good for many years, but like I said, eventually he might be locked in.”

  “What do most people do?”

  “About seven percent get vented.”

  “Why so few?”

  “This is a very difficult, intimate decision. If Richard gets this surgery, assuming you’re his caregiver, your quality of life is going to go way down. I don’t care how kind or tough you are, you’ll end up getting something called compassion fatigue. It’s essentially PTSD.”

  Kathy waits, perhaps thinking that Karina will have another question. She’s silenced. Kathy turns her attention back to Richard.

  “In Massachusetts, if you decide to get the trach and later change your mind, you can elect to go off the ventilator in the hospital or at home with Hospice. How old is Grace again?”

  “She’s twenty,” says Karina.

  “She’s in college, right?”

  “Yes.”

  Richard blinks.

  “If you wanted to see her graduate or get married, if you wanted to stick around a bit longer, some people choose to go on the vent for this one last thing and then elect to go off it.”

  Grace graduates in a little over two years. He’d like to see that. He’d like to see her get married. He’d like to meet his grandchildren. He’d like to live.

  Kathy sits on the edge of his bed so she’s now closer to eye level and puts her hand on his. Her eyes are the color of deeply steeped black tea, tired and kind. Her hand is so blessedly warm and human.

  “Are you afraid to die?”

  He blinks.

  “I’m sorry to be so blunt. Are you afraid of suffering at death?”

  He blinks.

  “What else are you afraid of?”

  Letting go. Disappearing. Not existing. There is another fear, lurking in the shadows of his consciousness, but he can’t identify it.

  “I’m going to leave you and Karina with some information and a letter board. I know you haven’t had to use one of these yet, and it’ll be slow and frustrating, but it’ll give you a way to express whatever you need to ask or say.”

  “How quickly do we have to make this decision?”

  “I don’t want you to make this decision today. Think on it and think of questions, and I’ll be back tomorrow. He can’t be intubated like this for very long. This decision can’t happen over a week’s time. It can’t wait too long.”

  Kathy goes over how to use the letter board. Richard only half listens. He’s more captured by the steady, rhythmic sounds of the ventilator, the push and pull of air forced in and out of him, the percussive music of his body being breathed. In. Out. In. Out. A clock ticking. Kathy finishes her tutorial.

  “Okay, I’ll be back tomorrow. So we’re one hundred percent clear on the choices. Your choice is either to be extubated and most likely die, or you’re getting the surgery and asking Karina to take care of you twenty-four/seven. You understand that these are your choices and the consequences of each?”

  Richard blinks and doesn’t look at Karina. He assumes she understands as well.

  It’s either his life or hers.

  CHAPTER THIRTY-ONE

  Standing at the end of a long line in the hospital cafeteria, Karina waits to pay for her second cup of coffee. She’s in no hurry. The man in front of her is dressed in blue scrubs, carrying a tray of yogurt, granola, fruit, and orange juice. She’s hungry, but the thought of food makes her nervous stomach turn. More coffee won’t sit well in her either, but she needed something else to purchase, a reason to stay in the cafeteria, and coffee seemed like the simplest choice. She left Richard’s room in the ICU yesterday evening and hasn’t drummed up the nerve yet to return. She hasn’t picked up that letter board. She doesn’t know what he’s thinking, what he wants to do. She hasn’t asked him. She knows she has to. One more cup of coffee first.

  If this were a movie, she’d have her hands over her eyes, her breath held, silently begging the woman waiting in line to pay for coffee not to go up to the ICU. If this were a book, she’d close it without turning the page. She doesn’t want to know his decision.

  She’s such a coward. She didn’t used to be. She used to be fearless. She left her family, her home, her country, when she was eighteen and never looked back. Where did that woman go? She wishes she could reclaim that courageous spirit who graduated with honors from a college in a foreign country and played piano in New York with the best jazz musicians in the city. Maybe she could start by being a woman who finishes her coffee, takes the elevator to the ICU, picks up that letter board, and finds out what happens next.

  What if he wants the surgery?

  She can’t be his 24-7 caregiver. But there’s no one else. His parents are dead. His brothers have jobs and wives and kids to raise. Private help is insanely expensive, and Richard’s money is gone, already sunk into his care, the wheelchair, the lift, Grace’s college. He can’t ask Grace to do this for him. Karina won’t let him.

  He’s not her husband anymore. She doesn’t have to do this. He’s not her burden to bear. She thinks of his affairs, of all the women he’s slept with. Where are all these women now? Not in the hospital cafeteria. Not in the ICU. Not in her den every day for the rest of his life.

  She thinks of the decade she spent lying to him, pretending to want more children, feigning disappointment every month, feeding him medically plausible reasons for her fictitious infertility, pretending to go to doctor appointments. The first coffee sours in her stomach, and she feels as if she could throw up.

  He wanted more children. He especially wanted a son. Every month for years, he thought they were trying to conceive. She got an IUD when Grace was three and never told him. She was afraid to tell him the truth, that he wouldn’t want her anymore, that he’d divorce her. And then where would she be? Disgraced and alone, a single mother to a preschooler, divorced and unemployed in a foreign country.

  When Grace was thirteen, Karina went to her ob-gyn to have the IUD replaced. But it wouldn’t come out. It had embedded in the wall of her uterus, and she needed surgery to remove it. Petrified of surgery, she confessed everything to Richard. Her decade of deception.

  When she allows herself to remember that day, she’s still haunted by the reaction on his face, his expression evolving from shock to grief to rage. The rage remained, burned into his features and probably his heart. It took them a year to separate and another two to get officially divorced, but their marriage was over the day she told him what she’d done.

  He’s never forgiven her. She doesn’t blame him. Whatever his sins were, this one was entirely hers. Maybe caring for him on a vent for the next decade is what she deserves, penance for this unforgivable sin. Maybe that would finally absolve her.

  If he says he wants the surgery, can she refuse to be his caregiver? She’d essentially be sentencing him to death. If he wants to live, who is she to say that he should die? Should she shut up and do whatever he wants, whatever it takes to keep him alive? An old but familiar resentment flares. Twenty years ago, he accepted that teaching position at New England Conservatory, made the decision to move them from New York to Boston without regard for her happiness, her freedom, her career. He stole the life she wanted from her. And here she is
, all these years later, considering the real possibility of playing jazz again, and Richard still has the power to stop her.

  She doesn’t want to be sentenced to life as his caregiver, a prisoner chained to his paralyzed body. What will he do? It’s going to be a death sentence for one of them.

  “Is that it?”

  “Huh?” Karina looks up, baffled.

  “Is it just the coffee?” asks the cashier.

  “Oh, yeah. Sorry.”

  Karina pays and finds an empty seat at a table for two. She wraps her hands around the paper cup and brings her nose to the lip, inhaling the smell instead of drinking. She checks her phone, hoping for a text or email that will keep her busy. She has nothing.

  She tries to imagine where Richard’s head is at, to gamble on his decision. While his body is useless and essentially dead already, his mind, his intellect, his personality, are still perfectly intact. What would she do? She takes a sip of the coffee she doesn’t want and knows her answer before she swallows. She wouldn’t get the surgery. She wouldn’t go on a vent. She wouldn’t want anyone giving up his or her life to keep her alive. She wouldn’t want to linger on like that, locked in, totally dependent on others for everything.

  But Grace. She wouldn’t want to leave her yet. What will Grace do after college? Who will she marry? What will her life look like? Who is she going to be? Karina wants to know, to be here to see it all.

  What if it’s not forever? What if he chooses the surgery so he can see Grace graduate in two years, or he only needs caregiving for one more year until a bed becomes available in a facility? Could she do that? She stayed married to him, trapped in their broken relationship, persevering for at least ten years for the sake of Grace, appearances, her religion, and security. So she could do this for one or two years. But what if it’s more? What if he wants to go on living at any cost?

  She closes her eyes and prays, searching for the right thing to do. She opens her eyes and stares into her coffee, at the doctor reading his phone at the table across from her, at the cashier ringing up the next customer. No one and nothing have an answer for her.

  Even Kathy couldn’t tell them what to do. The trach surgery is a horrible choice. I would never do that. I recommend extubation and death by suffocation at home with Hospice. That’s the only way to go. Karina wishes the decision were black-and-white like this. Instead, she and Richard have been thrown into the deep end of a gray ocean. There is no horizon, no North Star visible in the gray sky, only these impossible choices before them.

  She sits until her coffee is stone cold, the cup still full. It’s almost eleven o’clock. Time to face the music. She tosses her cup in the trash, rides the elevator to the ICU, and takes a deep breath before entering Richard’s room.

  The back of his bed is partially reclined, so he’s sitting up. He’s awake, looking at her with round, alert eyes. He looks smaller than he did yesterday, his emaciated body disappearing beneath the hospital sheets like a magic trick, the breathing tube and ventilation machine overwhelming his modest mass. The machine clicks and whirs, and Richard’s chest forcefully rises and falls about every three seconds. She eyes the letter board on the table next to his bed and then quickly returns her gaze to Richard’s chest, pretending she didn’t notice it.

  She tries to smile. “Has Kathy been here yet?”

  He does nothing but stare wide-eyed back at her, and she wonders whether his lack of response means no, he didn’t hear her, or he’s ignoring her.

  “Are you still waiting for Kathy?”

  He blinks.

  “Okay.”

  She could wait for Kathy to find out if he’s made a decision. She doesn’t have to ask him. Kathy can do it. That’s Karina’s plan. She sits in the visitor’s chair next to his bed and intends to stay busy on her phone until Kathy appears. Karina scrolls through her newsfeed on Facebook without interest. She’s sitting to his right, and Richard can’t turn his head, but she can feel his eyes on her. She glances up, and his eyes lock onto hers, desperate, begging for communication.

  “We’re going to wait for Kathy, okay?”

  He stares at her, unblinking.

  “Do you want to tell me something before she gets here?”

  He blinks.

  Shit.

  “Do you know what you want to do?”

  He blinks.

  Her stomach hollows out, and her heart beats in her throat. Reluctantly, slowly, she picks up the letter board. She turns back toward the door, trying to will Kathy’s appearance. No one is there. She turns back to face Richard and holds up the letter board.

  “Is the first letter in the first row?”

  She waits. Nothing.

  “Second row?”

  He blinks.

  “Is it E?”

  “F?”

  “G?”

  “H?”

  He blinks.

  “H.”

  “Is the second letter in the first row? . . . Second? . . . Third? . . . Fourth?”

  He blinks.

  “Fourth?”

  He blinks.

  “Is it O?”

  He blinks.

  “Okay, H-O. Is the third letter in the first row? . . . Second? . . . Third?”

  He blinks.

  “M?”

  He blinks.

  “Home?”

  He blinks. A tear falls from his right eye. She pulls a tissue from her coat pocket and blots his face.

  “You want to go home?”

  He blinks.

  But does that mean he wants to have the surgery and go home on a vent or be extubated and go home?

  “Do you want the surgery?” she hears herself ask.

  He stares at her, eyes wide, tears welling out of both now. He doesn’t blink them away.

  “You want them to take the tube out and go home?”

  He blinks through wet eyes.

  “My God, Richard. You understand what that means, right?”

  He blinks, and she is simultaneously relieved and devastated. She bursts into tears, crying hard, alternately mopping his face and hers with the same pathetic tissue.

  “I’m so sorry, Richard.” She searches her pockets for another tissue, not finding one. “I’m so sorry. Do you want me to call Grace?”

  He blinks.

  “Okay. She’ll be here. Who else? Your brothers?”

  His eyes remain steady.

  “Bill?”

  He blinks.

  “Trevor?”

  He doesn’t blink.

  “Okay. Me, Grace, and Bill. Anyone else?”

  He stares through his shiny, wet eyes straight into hers. She wipes her nose with the damp tissue and sniffs.

  “Are you scared?”

  He blinks.

  “I am, too.”

  She sits on the edge of his bed and holds his bony, lifeless hand in hers. She pulls out her shirtsleeve and gently wipes the tears from his eyes and cheeks and then does the same to hers.

  “Thank you,” she whispers.

  He blinks.

  CHAPTER THIRTY-TWO

  Grace still hasn’t taken her coat off. She’s standing at a remove from the end of his bed, her suitcase by her side. She arrived about an hour ago, coming straight from the airport. Her face is drawn, her eyes steeled, her expression flat and unfamiliar to him. She feels so far away. This is not her normal face. He wants to tell her to come closer and smile, an absurd request even if he could make it given the circumstances, but he wants to see her face the way he loves it most—bright eyes, rosy cheekbones perched high atop each side of an easy smile, happy. He supposes his face, unshaven with a tube inserted into his mouth and taped to his cheek, looks unfamiliar to her, as well.

  Karina asked her many questions about classes and her boyfriend when Grace first arrived, but they’ve run out of conversation. Everyone in the room is quiet. Karina is sitting in the chair next to him, her arms crossed tight in front of her chest as if she’s cold. She looks tired, serious, vaguely alert. K
athy is standing by the ventilator, reading something on her phone. Bill sits at the foot of the bed, rubbing Richard’s feet and calves with his warm, strong hands. God bless Bill.

  The sense of waiting is fog-thick, ominous, surreal. The moment feels important, urgent, yet absolutely nothing is happening. It’s absurdly mundane.

  A slender woman with a boyish haircut and many silver-studded earrings enters the room.

  “Hello. Is this Richard?”

  “Hi, Ginny,” says Kathy. “Yes, this is Richard Evans. And this is his ex-wife, Karina; their daughter, Grace; and home health aide extraordinaire Bill. This is Ginny from Hospice.”

  Instead of shaking hands, she hugs everyone. She stands over Richard and places a hand on his shoulder. Her eyes are brown and without makeup, clear and calmly confident. She smiles in a way that feels natural and not at all inappropriate for the situation. There is no joy, no pity, no forced falseness in her gesture, and without words she communicates, I’m here with you. Richard wishes he could thank her.

  “I’ll let the doctor know that you’re here,” says Kathy, excusing herself from the room.

  “Let’s talk about a few things before the doctor comes. Our goal today is to get you comfortably home. The doctor is going to remove the endotracheal tube and switch you over to a BiPAP. We won’t know until he does this, but if your breathing muscles are totally gone, the BiPAP won’t be able to sustain your breathing. If that should happen, I’ll administer morphine and a sedative through the IV line, so they’ll take effect immediately. I’ll be here to make sure that you feel calm. You won’t struggle, and you won’t feel like you’re suffocating. And everyone will be right here with you. Does that sound okay?”

  The mechanical ventilator breathes air into Richard’s lungs. Then it draws air out. Absolutely nothing about what she just said sounds okay. He blinks. Karina holds his hand in hers. Bill squeezes his foot. Ginny, whom Richard had never seen before a minute ago, keeps her hand on his shoulder, and he’s grateful, reassured by her presence and touch. This isn’t her first rodeo.

  Kathy DeVillo returns with Dr. Connors, a blue tie peeking out from beneath his buttoned white lab coat, a pen and a phone tucked in the front pocket, a stethoscope around his neck. He was clean shaven when Richard was first admitted to the ICU but now has the beginnings of a beard. He’s been in and out, checking on Richard many times over the past three days.