Every Note Played

Forced to lie flat on his back each night, propped up by several pillows to help him breathe, Richard rarely sleeps well. Smelling his freshly laundered sheets one morning, he remembers his childhood, including tasty breakfasts and satisfying piano lessons.

Getting up, Richard goes to the bathroom, spilling some urine on the floor. As a side effect of a drug that reduces his saliva, Richard is constipated and hasn’t had a bowel movement for five days. Richard walks through his apartment, unable to prepare food or read the books on his shelf. Seeing pictures of Grace on his desk, he regrets spending so little time with her. He also wishes that, had things turned out differently, he could have had more children, especially a son.

Richard thinks of his father, Walt Evans, who was a football player and coach who showed no interest in Richard’s affinity for classical music. Instead, he lavished attention on Richard’s two brothers, who were more athletic. In much the same way, Richard struggled to connect with Grace, who loves sports but has no interest in playing piano.

With nothing else to do, Richard sits on the couch and imagines his life without ALS until he falls asleep.

At 9:00 am, Bill arrives and greets Richard cheerfully. After giving Richard a laxative, Bill helps Richard complete his daily hygiene routine, belting out showtunes as he does so. Genova explains that Bill became a home health aide after caring for his partner, who was diagnosed with acquired immunodeficiency syndrome (AIDS) before dying of pneumonia in 1991. Richard thinks of Bill as “equal parts brother, doctor, therapist, and friend” (96). Although Richard is not fond of the Broadway tunes Bill sings and whistles, he’d rather endure Bill’s singing than listen to classical music, which only reminds him of his losses.

After helping Richard dress, Bill prepares a smoothie for Richard. Richard asks Bill to let him out for a walk as he leaves. Bill is hesitant but agrees after making sure that Richard’s next-door neighbor is available to let him back in. Bill helps Richard put on his winter clothes and watches him walk downstairs before leaving for his next appointment.

By the time he enters the Boston Public Garden three blocks from his home, Richard is exhausted. He painstakingly makes his way to a nearby bench, falling forward onto it. Observing the people and living things around him, he feels stagnant by comparison. Sitting on the bench, Richard reflects on his relationship with Karina. In addition to their mutual attraction, Richard bonded with Karina since she left her life in Poland behind to study music, just as Richard made a clean break from his rural New Hampshire upbringing, including his unsupportive father.

Richard gathers his strength and begins the difficult walk home. As he walks, he feels an increasingly powerful bowel movement coming on. Arriving outside the apartment, he attempts to contact his neighbors, but no one is available to let him in. Desperate, Richard uses the voice command on his phone to try to call Caring Health in the hopes they can send an aide, but his phone misinterprets his voice command and instead calls Karina, who says she can be there shortly.

In the time it takes Karina to arrive, Richard succumbs to his bowel movement. She helps him upstairs to the bathroom, undresses him, and cleans the stool from his legs and groin. Richard apologizes and tells her to leave him for Melanie, his next aide, to deal with. Karina ignores his request and continues to clean him despite her disgust.

Afterward, while dressing Richard in a fresh set of clothes, Karina says, “Holy shit,” and the two of them laugh at her accidental pun. Waiting for Melanie to arrive, Karina learns that Richard’s aides are present for only four hours a day. Despite misgivings, she feels compelled to say, “You need to come back home” (125).

Richard moves back into Karina’s house, which he left when they separated three years earlier. The den on the ground floor becomes his bedroom, and he has a hospital bed installed. Emotionally, Richard feels “demoralized, pathetic, emasculated” (127).

Just over a week after the move, Richard sits at the computer, using a pointer that attaches to his nose to type. He composes a letter to his father but—like the six other drafts he has saved—chooses not to send it, unsure of how his father would respond. Richard becomes somewhat uncomfortable but decides to wait for his next aide to arrive rather than ask Karina for help. He sips a milkshake while listening to one of Karina’s students struggle through a nocturne by Chopin.

As his mind wanders, Richard wonders why he got ALS. Some cases are genetic, but his case is sporadic, caused by unknown environmental factors in addition to genes. Hearing Karina play as a demonstration to her student, Richard acknowledges his role in ending her career as a performing artist prematurely. Though he didn’t admit it at the time, Richard knew that moving to Boston would limit her opportunities for development as a jazz pianist. Filled with bitterness toward Karina, Richard wonders if his experience with ALS can somehow lead to reconciliation with her.

On Christmas Eve, Karina sings as she prepares a traditional Polish meal. Grace arrived home two days prior but has been unusually reclusive. Though Karina warned Grace that Richard has moved back in, neither has told her about his diagnosis.

As the meal begins, Richard sips a milkshake while Grace and Karina sample various Polish dishes. Grace eats quickly without speaking. She tries to leave, but Karina insists that she stay at the table. As Karina questions her about school, Grace reveals that she found out that Richard has ALS from a friend, and she is upset that no one told her sooner. Richard explains that he didn’t want to distract her from her studies.

Richard asks Karina to feed him a few bites of cake. The two share a tender moment as she fulfills his request. However, when a piece of cake becomes lodged in his windpipe, he struggles to breathe, and Karina administers abdominal thrusts.