Every Note Played

Every Note Played is a 2018 novel by neuroscientist Lisa Genova. The novel follows the life of a concert pianist who is diagnosed with amyotrophic lateral sclerosis (ALS) and must give up his performing career as a result; it also follows the personal impacts of his diagnosis on his relationships with his ex-wife and daughter.

This guide refers to the 2018 Scout Press edition.

Content Warning: The source text and this guide discuss themes of the progression of a chronic illness and death.

Plot Summary

The novel opens as middle-aged pianist Richard Evans is performing a favorite piece by Robert Schumann. Soon thereafter, he is diagnosed with ALS, which involves the progressive loss of motor control over the muscles in his body, eventually leading to paralysis. At first, Richard remains in denial, but as his right hand becomes twitchy and unresponsive, he realizes that his career is over.

Not long after, Karina, Richard’s ex-wife, learns of Richard’s diagnosis at a friend’s party in Boston. Karina grew up in Poland and emigrated to the US to attend the Curtis Institute of Music, where she met and fell in love with Richard. A gifted pianist herself, Karina teaches classical piano lessons but dreams of playing jazz music. She stopped pursuing jazz after marrying Richard and giving birth to their daughter, Grace.

After hearing about his diagnosis, Karina stops by to visit Richard unannounced. The two soon get into an argument, and Karina leaves. Over the next few weeks, Richard continues to lose control of his right hand and devotes himself to practicing piano repertoire written solely for the left hand. Meanwhile, Karina visits Grace, who is a freshman at the University of Chicago. Karina chooses not to tell Grace about Richard’s diagnosis.

A few months after Richard’s diagnosis, he breaks up with his girlfriend, Maxine; Richard's care coordinator encourages him to reach out to family and friends for support. Richard struggles to think of anyone since he is estranged from his father, his mother is dead, and his two brothers are busy raising families of their own. Around this time, Karina visits Richard again. Seeing the progression of his symptoms, Karina feels sorry for him.

One day, Richard convinces his home health aide, Bill, to let him go for a walk at the end of Bill’s morning shift. Richard walks to the nearby Boston Public Garden but soon runs out of strength. After pausing to rest on a bench, he turns back toward home. At the same time, Richard, who has been constipated for several days due to a medication he is taking, feels a bowel movement coming on. He manages to restrain himself until he arrives outside his home, but none of his neighbors is available to let him back inside. Panicking, he calls Caring Health, but his phone misinterprets his voice command and calls Karina instead. By the time she arrives, Richard’s legs and pants are covered in stool, which she helps him clean. At the end of her visit, she invites Richard to move back into her house so that she can help care for him. Richard moves into the den at Karina’s house, where he has a hospital bed installed. Despite their newfound proximity, Richard and Karina remain emotionally distant, despite Bill’s encouragement for the two to speak openly to each other.

When Grace returns home to Boston for Christmas break, she is offended that Richard and Karina didn’t tell her about Richard’s diagnosis sooner. After Richard almost chokes on a piece of cake, his doctors attach a feeding tube directly to his stomach, allowing him to receive nutrition without needing to chew or swallow. Meanwhile, at night, Richard uses a BiPAP, a machine that supports his breathing. Before Grace returns to college, Richard apologizes for being absent during most of her childhood.

After meeting with an augmentative communications specialist, Richard begins to record key phrases in his rapidly weakening voice. Meanwhile, he agonizes over whether or not to reach out to his father, Walt. A dedicated athlete and coach, Walt never appreciated Richard’s preference for classical piano. One day, while drafting a letter to his father, Richard learns that Walt has just passed away. Karina, Grace, and Richard attend the funeral in New Hampshire the following week, where Richard’s brothers apologize for Walt’s behavior.

A while later, Karina goes on a trip to New Orleans with her friend and neighbor Elise, who is a professor of contemporary improvisation in music. While Karina is gone, Grace takes over caring for Richard. One night, Richard falls while wandering the house, and his nose bleeds. When Grace finds him, he refuses her offer to call for help. Instead, she cleans him up and then sleeps next to him on the kitchen floor since he is too heavy for her to move on her own. Starting the next day, Richard begins to use his wheelchair.

Meanwhile, as Karina listens to an up-and-coming jazz pianist in New Orleans, she realizes that she still wants to play jazz and that she has been using her family and her fear of failure as excuses. After returning home, she surprises Richard by purchasing his grand piano.

When Karina catches a cold, Richard gets pneumonia and struggles to breathe. At the hospital, the doctors put him on a ventilator and explain that he must choose between getting a tracheostomy—which would allow him to survive indefinitely but require even more support—and dying naturally of respiratory failure. Karina worries and wonders what to do; she feels particularly guilty about lying to Richard for much of their relationship, pretending that she wanted more children, even though she actually had an intrauterine device installed to prevent any additional pregnancies. She is relieved and grateful when Richard indicates that he does not want the surgery and opts for a natural death.

Richard returns home and, three days later, passes away while Karina is playing a nocturne by Chopin. A few days later, Karina receives an email containing a voice recording left by Richard. In the recording, he apologizes for cheating on her and encourages her to take up jazz and be happy.