渐冻人钢琴家

By Lisa Genova

具有音乐天赋的卡琳娜自幼离开故土波兰，移居美国追寻自己的梦想。在美国柯蒂斯音乐学院，她遇到了才华横溢的理查德·埃文斯，两人坠入爱河，结婚成家。

卡琳娜为顾及丈夫的钢琴演奏生涯和养育女儿，放弃了自己爵士钢琴家的梦想。然而理查德并不是一个好丈夫和好父亲，他为了自己的事业，牺牲了妻子的职业追求，放弃了陪伴女儿成长的过程。对他来说，钢琴就是他的爱人和孩子。后来由于理查德的不忠及两人生活态度上的分歧，他们在女儿格雷丝上大学前宣布离婚。然而，理查德在音乐演奏生涯的黄金时期突然患了肌萎缩性（脊髓）侧索硬化症（ALS），这对于一个以钢琴演奏为生的人来说等于宣判了死刑。

作者莉萨·吉诺瓦博士是一位脑科学和神经学专家。她很擅长把读者带入故事角色的身体、灵魂和思想之中，让读者真切地了解不治之症的患者痛苦的日常生活及其家人的恐惧情绪。

If Karina had grown up fifteen kilometers down the road in either direction north or south， in Gliwice or Bytom instead of Zabrze， her whole life would be different. Even as a child， she never doubted this. Location matters in destiny as much as it does in real estate.

In Gliwice， it was every girls birthright to take ballet. The ballet teacher there was Miss Gosia， a former celebrated prima ballerina（首席芭蕾舞演员）for the Polish National Ballet prior to Russian martial law（戒严令，军事管制）， and because of this， it was considered a perk（特权，特殊待遇）to raise daughters in otherwise grim Gliwice， an unrivaled privilege that every young girl would have access to such an accomplished teacher. These girls grew up wearing leotards（芭蕾紧身衣）and buns（圆发髻）and tulle-spun（薄纱裙）hopes of pirouetting（用脚尖旋转）their way out of Gliwice someday. Without knowing specifically what has become of the girls who grew up in Gliwice， shes sure that most， if not all， remain firmly anchored where they began and are now schoolteachers or miners wives whose unrequited（无回报的，实现不了的）ballerina dreams have been passed on to their daughters， the next generation of Miss Gosias students.

If Karina had grown up in Gliwice， she would most certainly not have become a ballerina. She has horrible feet， wide， clumsy flippers with virtually no arch， a sturdy frame cast on a long torso（軀干）and short legs， a body built more for milking cows than for pas de bourrée（巴代布雷，一种芭蕾舞滑走步法）. She would never have been Miss Gosias star pupil. Karinas parents would have put an end to bartering（以货易货）valuable coal and eggs for ballet lessons long before pointe shoes（脚尖部分加厚的芭蕾舞鞋）. Had her life started in Gliwice， shed still be in Gliwice.

The girls down the road in Bytom had no ballet lessons. The children in Bytom had the Catholic Church. The boys were groomed for the priesthood， the girls the convent（女修道院）. Karina might have become a nun had she grown up in Bytom. Her parents wouldve been so proud. Maybe her life would be content and honorable had she chosen God.

But her life was never really a choice. She grew up in Zabrze， and in Zabrze lived Mr. Borowitz， the towns piano teacher. He didnt have a prestigious pedigree（血统，家谱）like Miss Gosias or a professional studio. Lessons were taught in his living room， which reeked of cat piss（散发出猫尿味）， yellowing books， and cigarettes. But Mr. Borowitz was a fine teacher. He was dedicated， stern but encouraging， and most important， he taught every one of his pupils to play Chopin（肖邦）. In Poland， Chopin is as revered（受人崇敬的）as Pope John Paul II and God. Polands Holy Trinity（三位一体）.

Karina wasnt born with the lithe（柔软的）body of a ballerina， but she was graced with the strong arms and long fingers of a pianist. She still remembers her first lesson with Mr. Borowitz. She was five. The glossy（平滑光亮的）keys， the immediacy of pleasing sound， the story of the notes told by her fingers. She took to it instantly. Unlike most children， she never had to be ordered to practice. Quite the opposite， she had to be told to stop. Stop playing， and do your homework. Stop playing， and set the dinner table. Stop playing， its time for bed. She couldnt resist playing. She still cant.

Ultimately， piano became her ticket out of oppressive Poland， to Curtis1 and America and everything after. Everything after. That single decision—to learn piano—set everything that was to follow in motion， the ball in her lifes Rube Goldberg machine2. She wouldnt be here， right now， attending Hannah Chus graduation party， had she never played piano.

She parks her Honda behind a Mercedes， the last in a conga3 line of cars along the side of the road at least three blocks from Hannahs house， assuming this is the closest shell get. She checks the clock on the dash.Shes a half hour late. Good. Shell make a brief appearance， offer her congratulations， and leave.

Her heels click against the street as she walks， a human metronome（節拍器）， and her thoughts continue in pace with this rhythm. Without piano， she would never have met Richard. What would her life be like had she never met him？

How many hours has she spent indulging in this fantasy？ If added up， the hours would accumulate into days and weeks， possibly more. More time wasted. What couldve been. What will never be.

Maybe she wouldve been satisfied had she never left her home country to pursue piano. Shed still be living with her parents， sleeping in her childhood bedroom. Or shed be married to a boring man from Zabrze， a coal miner who earns a hard but respectable living， and shed be a home-maker， raising their five children. Both wretched scenarios appeal to her now for a commonality she hates to acknowledge： a lack of loneliness.

Or what if she had attended Eastman4 instead of Curtis？ She almost did. That single， arbitrary choice. She would never have met Richard. She would never have taken a step back， assuming with the arrogant and immortal optimism of a twenty-five-year-old that shed have another chance， that the Wheel of Fortunes spin would once again tick to a stop with its almighty arrow pointing directly at her. Shed waited years for another turn. Sometimes life gives you only one.

But then， if shed never met Richard， their daughter， Grace， wouldnt be here. Karina imagines an alternative reality in which her only daughter was never conceived and catches herself enjoying the variation almost to the point of wishing for it. She scolds herself， ashamed for allowing such a horrible thought. She loves Grace more than anything else. But the truth is， having Grace was another critical， fork-in-the-road， Gliwice-versus-Bytomversus-Zabrze moment. Left brought Grace and tied Karina to Richard， the rope tight around her neck like a leash（牵狗绳）or a noose（套索）， depending on the day， for the next seventeen years. Right was the path not chosen. Who knows where that mightve led？

Karina almost didnt come today. She feels self-conscious about showing up alone. Naturally introverted， shed been extremely private about her marriage and even more shut-in about her divorce. Assuming Richard didnt air their dirty laundry（把家丑公之于众）either， and thats a safe bet， no one knows the details. So the gossip mill scripted the drama（八卦工廠编写剧本）it wasnt supplied. Someone has to be right， and someone has to be wrong. Based on the hushed stares（安静的注视）， vanished chitchat（戛然而止的闲谈）， and pulled plastic smiles （强装出来的笑容）， Karina knows how shes been cast（被排除在外）.

The women in particular sympathize with him. Of course they do. They paint him as a sainted celebrity（德高望重的名人）. He deserves to be with someone more elegant， someone who appreciates how extraordinary he is， someone more his equal. They assume shes jealous of his accomplishments， resentful of his acclaim（喝彩，称赞）， bitter about his fame. Shes nothing but a rinky-dink（不登大雅之堂的次品）suburban piano teacher instructing disinterested（毫无兴趣的）sixteen-year-olds on how to play Chopin. She clearly doesnt have the selfesteem to be the wife of such a great man.

They dont know. They dont know a damn thing.

Grace just finished her freshman year at the University of Chicago. Karina had anticipated that Grace would be home for the summer by now and would be at Hannahs party， but Grace decided to stay on campus through the summer， interning on a project with her math professor. Something about statistics. Karinas proud of her daughter for being selected for the internship and thinks its a great opportunity， and yet， theres that pang in Karinas stomach， the familiar letdown. Grace couldve chosen to come home， to spend the summer with her mother， but she didnt. Karina knows its ridiculous to feel slighted（被轻视，被怠慢）， forsaken even， but her emotions sit on the throne of her intellect. This is how shes built， and like any castle， her foundational stones arent easily rearranged.

Her divorce became absolute in September of Graces senior year， and exactly one year later， Grace moved a thousand miles away. First Richard left. Then Grace. Karina wonders when shell get used to the silence in her home， the emptiness， the memories that hang in each room as real as the artwork on the walls. She misses her daughters voice chatting on the phone； her giggling girlfriends； her shoes in every room； her hair elastics（橡皮圈）， towels， and clothes on the floor； the lights left on. She misses her daughter.

She does not miss Richard. When he moved out， his absence felt more like a new presence than a subtraction. The sweet calm that took up residence after he left filled more space than his human form and colossal ego（庞大的自我）ever did. She did not miss him then or now.

She arrives at the pool house and inserts herself into the circle of Pam and Scott and other parents. Their voices instantly drop， their eyes conspiring（密谋）. Time pauses.

“Hey， whats going on？” Karina asks.

The circle looks to Pam.

“Um...” Pam hesitates. “We were just talking about Richard.”

“Oh？” Karina waits， her heart bracing for something humiliating. No one says a word. “What about him？”

“He canceled his tour.”

“Oh.” This isnt earth-shattering news. Hes canceled gigs（特约演奏会）and touring dates before. Once， he couldnt stand the conductor and refused to set foot onstage with him. Another time， Richard had to be replaced last minute because he got drunk at an airport bar and missed his flight. She wonders what reason he has this time. But Pam and Scott and the others stare at her with grave expressions， as if she should have something more compassionate to say on the subject.

“You really dont know？” asks Pam.

“What？ What， is he dying or something？”

A nervous half-laugh escapes her， and the sound finds no harmony. She searches the circle of parents for connection， even if the comment was slightly inappropriate， for someone to forgive her a bit of dark humor. But everyone either looks horrified or away. Everyone but Pam. Her eyes betray a reluctant nod.

“Karina， he has ALS5.”

1. Curtis： 全稱为The Curtis Institute of Music，柯蒂斯音乐学院，是全球闻名的音乐学院之一，被称为培养天才音乐家的学府。

2. Rube Goldberg machine： 鲁比·戈德堡机器，是一种故意设计成用间接或过于复杂的方式完成一项简单任务的机器，美国漫画家鲁比·戈德堡（Rube Goldberg）的漫画作品里经常描绘这样的机器，故得名。

3. conga： 康茄舞，原指起源于非洲的一种拉丁美洲舞蹈，此处形容停在路边的歪歪扭扭的一长队汽车。

4. Eastman： 全称是Eastman School of Music，伊士曼音乐学院，是世界知名的音乐学院之一。

5. ALS： 是amyotrophic lateral sclerosis的缩写，多译为肌萎缩性（脊髓）侧索硬化症（也称为渐冻人症），是一种运动神经元的特殊疾病，其特征为肌肉僵硬、抽搐，并逐渐恶化，最终导致说话、吞咽和呼吸困难。