Every Note Played

By Lisa Genova

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爵士钢琴演奏家卡琳娜在女儿格雷丝出生之后决定放弃自己的事业，以便全心全意养育女儿并支持丈夫理查德的钢琴演奏生涯。而理查德却不是一个好丈夫和好父亲，随之两人的婚姻陷入危机。这时理查德突然被诊断患有肌萎缩性（脊髓）侧索硬化症（ALS）——这对一个需要肌肉和力量的钢琴演奏家来说等于宣判了死刑。起初理查德拒绝相信命运会如此残酷，他还很年轻，钢琴演奏事业正蒸蒸日上，他无法想象不能演奏钢琴的人生还会有什么意义。是继续苟延残喘还是尽快结束生命？这对曾经的夫妻会作出什么样的选择呢？

本文节选自《曲终人尽》（Every Note Played），作者莉萨·吉诺瓦（Lisa Genova）是一位脑科学和神经学专家。她的首部小说《依然爱丽丝》（Still Alice, 2007）讲述了一位患有早发性阿尔茨海默病的哈佛大学教授的故事。该书大获赞誉，被翻译成37种语言。2014年根据小说改编的电影后来获得奥斯卡最佳女主角奖。在创作《依然爱丽丝》的过程中，作者也接触到了一些ALS患者（亦称渐冻人）。她跟踪并走进这些ALS患者的家庭，为创作《曲终人尽》积累了原始素材。《曲终人尽》中，作者对ALS病人日常生活的艰难和痛苦进行了细致深入的描写，使读者对这种毁灭性的疾病感同身受。

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 fi nishes her coffee, takes the elevator to the ICU（重症监护病房）, picks up that letter board, and fi nds 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（假装）disappointment every month, feeding him medically plausible reasons for her fi ctitious infertility（编造的不孕症）, pretending to go to doctor appointments. The fi rst 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（子宫内避孕器）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（妇产科医师）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. Petrif i ed （吓坏的）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 off i cially 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（惩罚）for this unforgivable sin. Maybe that would fi nally absolve（赦免）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 fl ares. Twenty years ago,he accepted that teaching position at New England Conservatory（音乐学院）, 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.

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（气管造口术）surgery is a horrible choice. I would never do that. I recommend extubation（拔管）and death by suffocation（窒息）at home with Hospice. That's the only way to go. Karina wishes the decision were blackand-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（勇敢面对现实）. 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（上斜的）, so he's sitting up. He's awake, looking at her with round, alert eyes. He looks smaller than he did yesterday,his emaciated（瘦弱的，憔悴的）body disappearing beneath the hospital sheets like a magic trick, the breathing tube and ventilation machine（通气机，呼吸机）overwhelming his modest mass（此处指瘦小的躯体）. The machine clicks and whirs, and Ricahrd'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 fi nd 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 on 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（抽空）, and her heart beats in her throat. Reluctantly, slowly, she picks up the letter board. She turns back toward the door, trying to will（用意志力使……发生) Kathy's appearance. No one is there. She turns back to face Richard and holds up the letter board.

“Is the fi rst letter in the fi rst row?”

She waits. Nothing.

“Second row?”

He blinks.

“Is it E?”

“F?”

“G?”

“H?”

He blinks.

“H.”

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

He blinks.

“Fourth?”

He blinks.

“Is it O?”

He blinks.

“Okay, H-O. Is the third letter in the fi rst 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（悲哀的，可怜的）tissue.

“I'm so sorry, Richard.” She searches her pockets for another tissue, not fi nding 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.