An accomplished concert pianist, Richard received standing ovations from audiences all over the world in awe of his rare combination of emotional resonance and flawless technique. Every finger of his hands was a finely calibrated instrument, dancing across the keys and striking each note with exacting precision. That was eight months ago.
Richard now has ALS, and his entire right arm is paralyzed. His fingers are impotent, still, devoid of possibility. The loss of his hand feels like a death, a loss of true love, a divorce—his divorce.
He knows his left arm will go next.
Three years ago, Karina removed their framed wedding picture from the living room wall and hung a mirror there instead. But she still hasn’t moved on. Karina is paralyzed by excuses and fear, stuck in an unfulfilling life as a piano teacher, afraid to pursue the path she abandoned as a young woman, blaming Richard and their failed marriage for all of it.
When Richard becomes increasingly paralyzed and is no longer able to live on his own, Karina becomes his reluctant caretaker. As Richard’s muscles, voice, and breath fade, both he and Karina try to reconcile their past before it’s too late.
......(更多)
莉萨•吉诺瓦(Lisa Genova),哈佛大学神经学博士,主要研究课题包括忧郁症的分子病因、帕金森综合征、药瘾、中风引发的记忆丧失等。她的第一部小说《我想念我自己》改编为电影《依然爱丽丝》,女主角朱丽安·摩尔凭此片获得第87届奥斯卡金像奖最佳女主角。
《每一个音符》是她的第二部小说,在撰写这部小说时,她采访了数位渐冻症患者,了解他们的真实感受,甚至和其中几位成为挚友。她得到麻省总医院授权,在ALS门诊部近距离观察医护人员、患者及其家人的状态,和一线医护人员、ALS专家深入交流,采集到大量真实、可靠的信息。
在这本书中,作者以非常平静、温柔的笔法还原了一位“渐冻人”症患者生命中最后四个月的生命体验,也少见地呈现了绝症患者陪护家属的复杂处境,以及深沉的爱。本书完成后三个月,美国批准了治疗“渐冻人”症的新药品。
......(更多)
......(更多)
所有活着的东西都在运动中,去什么地方,说话,走路,啄食,飞翔,做事情。生命并不是静止不动的有机体。每一天,他都更加衰退、封闭,直至彻底宕机。运动越来越少。生命力也越来越弱。他正逐渐成为一张二维的静物画,无情地滑向疾病与死亡的平行维度。
......(更多)