曲終人盡

By Lisa Genova

爵士鋼琴演奏家卡琳娜在女兒格雷絲出生之后決定放棄自己的事業(yè)，以便全心全意養(yǎng)育女兒并支持丈夫理查德的鋼琴演奏生涯。而理查德卻不是一個(gè)好丈夫和好父親，隨之兩人的婚姻陷入危機(jī)。這時(shí)理查德突然被診斷患有肌萎縮性（脊髓）側(cè)索硬化癥（ALS）——這對(duì)一個(gè)需要肌肉和力量的鋼琴演奏家來(lái)說(shuō)等于宣判了死刑。起初理查德拒絕相信命運(yùn)會(huì)如此殘酷，他還很年輕，鋼琴演奏事業(yè)正蒸蒸日上，他無(wú)法想象不能演奏鋼琴的人生還會(huì)有什么意義。是繼續(xù)茍延殘喘還是盡快結(jié)束生命？這對(duì)曾經(jīng)的夫妻會(huì)作出什么樣的選擇呢？

本文節(jié)選自《曲終人盡》（Every Note Played），作者莉薩·吉諾瓦（Lisa Genova）是一位腦科學(xué)和神經(jīng)學(xué)專(zhuān)家。她的首部小說(shuō)《依然愛(ài)麗絲》（Still Alice， 2007）講述了一位患有早發(fā)性阿爾茨海默病的哈佛大學(xué)教授的故事。該書(shū)大獲贊譽(yù)，被翻譯成37種語(yǔ)言。2014年根據(jù)小說(shuō)改編的電影后來(lái)獲得奧斯卡最佳女主角獎(jiǎng)。在創(chuàng)作《依然愛(ài)麗絲》的過(guò)程中，作者也接觸到了一些ALS患者（亦稱(chēng)漸凍人）。她跟蹤并走進(jìn)這些ALS患者的家庭，為創(chuàng)作《曲終人盡》積累了原始素材。《曲終人盡》中，作者對(duì)ALS病人日常生活的艱難和痛苦進(jìn)行了細(xì)致深入的描寫(xiě)，使讀者對(duì)這種毀滅性的疾病感同身受。

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（重癥監(jiān)護(hù)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（編造的不孕癥）， 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（子宮內(nèi)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（婦產(chǎn)科醫(yī)師）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 （嚇壞的）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（懲罰）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（音樂(lè)學(xué)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.