曲终人尽

By Lisa Genova

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。

Shes such a coward. She didnt 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（重症监护病房）， picks up that letter board， and finds out what happens next.

What if he wants the surgery？

She cant be his 24-7 caregiver. But theres no one else. His parents are dead. His brothers have jobs and wives and kids to raise. Private help is insanely expensive， and Richards money is gone， already sunk into his care， the wheelchair， the lift， Graces college. He cant ask Grace to do this for him. Karina wont let him.

Hes not her husband anymore. She doesnt have to do this. Hes not her burden to bear. She thinks of his affairs， of all the women hes 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（假裝）disappointment every month， feeding him medically plausible reasons for her fictitious infertility（编造的不孕症）， 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（子宫内避孕器）when Grace was three and never told him. She was afraid to tell him the truth， that he wouldnt want her anymore， that hed 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 wouldnt come out. It had embedded in the wall of her uterus， and she needed surgery to remove it. Petrified （吓坏的）of surgery， she confessed everything to Richard. Her decade of deception.

When she allows herself to remember that day， shes 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 shed done.

Hes never forgiven her. She doesnt 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（懲罚）for this unforgivable sin. Maybe that would finally absolve（赦免）her.

If he says he wants the surgery， can she refuse to be his caregiver？ Shed 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（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 doesnt want to be sentenced to life as his caregiver， a prisoner chained to his paralyzed body. What will he do？ Its going to be a death sentence for one of them.

She tries to imagine where Richards 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 doesnt want and knows her answer before she swallows. She wouldnt get the surgery. She wouldnt go on a vent. She wouldnt want anyone giving up his or her life to keep her alive. She wouldnt want to linger on like that， locked in， totally dependent on others for everything.

But Grace. She wouldnt 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.