This is a dramatic and moving story about a concert pianist who, at 45 years of age, suddenly and inexplicably, has ALS, and also equally about his ex-wife Karina, who takes on his care throughout his slow, inevitable, and lethal decline. As many readers know, ALS (Amyotrophic Lateral Sclerosis). or “Lou Gherig’s disease,” hardens the motor nerves so that, progressively, there is no more control of muscles throughout the body. Not many readers know, however, the difficult path such patients and their families must pursue. This sensitive and detailed novel takes readers powerfully into the world of ALS, a disease for which there is today no cure.                                                                                      

Obsessed with his musical career and international travel, Richard has paid little attention to Karina and their daughter, Grace, and he has had affairs with other women. Karina has deceived him about her inability to bear more children. Because of their move from New York City to Boston, Karina, also a gifted pianist, has lost a possible career in jazz and now gives piano lessons to unpromising students. 

The first several chapters alternate between Richard and Karina. Although divorced from him, she brings him, now an ALS patient, back into the home they once shared. Various nurses, doctors, and other specialists try to explain the difficult future that includes certain loss of body functions, but Richard and Karina are slow to comprehend these. Despite their denial, they are forced to come to terms with Richard’s progressive decline and, finally, death.     
Richard loses the ability to use his hands, then his arms. He needs a special machine to breathe at night. Soon he has paid caregivers for parts of the day; these include a cheery and admirable man named Bill. No longer able to eat, Richard has a feeding tube. Later he needs a hospital bed. Also a Head Mouse to work his computer. Also an elaborate wheelchair. With unresolved issues in the past, Richard and Karina are emotionally apart—even with feelings of hate and rage—even while she cares for him.  

Karina’s walking partner Elise, a teacher, helps her stay sane. Karina travels to New Orleans with Elise and her class and finds her interest in jazz reawakened. No longer able to breathe even with assistance, should Richard go on to mechanical ventilation that will require 24-hour care at enormous expense? A choice is made. Richard dies, with various resolutions before and after his death.  


This is deeply moving and informative story. Genova brings us into the overlapping worlds of her two lead characters, their thoughts, their emotions, their dreams, and their trials. Both face various obstacles: Richard’s illness, of course, but also life choices each has made and the consequences. We also have clear explanations about ALS and current treatments. There are currently no ways to halt the disease’s progression, let alone a cure, but research is on-going.  

This is a tragic story of two talented characters, gifted musicians who fail in other areas of life, including marriage. They’ve never had (nor sought) counseling. They’ve never been honest about their betrayals of each other. Except for Karina’s friend Elise, they apparently have no friends. They don’t seem to have interests in politics, their neighborhood, or hobbies. Beyond the riches of music, they have no spiritual lives, no communities of faith. The ALS intensifies their narrow world, a sort of gothic prison. They ignore warnings from medical people about predictable losses, such as his voice; a therapist urges him to “phone bank” his voice, but he is slow to do this.
We may think of mythic figures such as Sisyphus, or Atlas, doomed and without hope, understanding, or comfort. Grace provides some support, and Karina provides a lot of practical help, but she and Richard do not reconcile during his decline. As his functions fail, there’s only sadness, loss, plus more loss to come. There are no clergy or other support. Late in his decline Hospice is mentioned but apparently not used until his extubation that leads to death. There are dramatic passages of grief, loss, and helplessness. For example:              

"He wants to run, scream, cry, punch something, break something, kill something. Instead he sits on the couch, powerless, laboring to breathe, staring vaguely at his pathetic reflection in the glassy black TV screen. He tries to imagine the life he might’ve lived if he hadn’t met Karina, if he had forty more years, if he didn’t have to sit here alone for two hours with no hands, if he didn’t have ALS. His breathing eventually settles as he stares and waits. He thinks of nothing coherent for a long time" (p. 93).  
At the end of this sad, sad story, there are some surprising and symbolic reconciliations for Richard and Karina that I will not reveal here. Carefully plotted, these provide some measure of satisfaction for the reader as a suggestion of poetic justice.  
One of the gifts of this book is the exploration of the world of the patient with a grave, debilitating illness that will be fatal. Many families go through this, but often out of sight of normal American society. We tend to think of the world of caregivers as professional—doctors, nurses, therapists, etc.—but actually the largest number are probably family and friends who provide day-to-day, hour-to-hour support. Every Noted Played makes this world clear. Despite her loss of romantic love for Richard, Karina is heroic. 

This is a gripping story of tragedy and sadness. It is enriched with real-world specifics, occasional dark humor, and a pervasive literary intelligence in such elements as style, dialogue, and managing the many layers of the story. 


Following the novel, there are six pages of “Lisa’s Call to Action” that asks for the reader’s involvement in combatting ALS. Next, the “Acknowledgments” thank many people, including several ALS patients and caregivers. The “Author’s Note” on the last page (p. 307) mentions a drug newly approved by the FDA that is promising for treatment of ALS.

Genova’s earlier book Still Alice, describing a woman with Alzheimer’s, was made into a movie. It seems likely that Every Note Played will follow the same path. 

Primary Source

Scout Press


Simon & Schuster

Place Published

New York



Page Count