Richard Evans was a concert pianist, receiving standing ovations from audiences all over the world and acclaim for artistry. He was the rare pianist who could seamlessly meld emotional resonance with flawless technique. Every finger of his hands was a finely calibrated instrument, dancing across the keys and striking each note with exacting precision.
Until eight months ago when he was diagnosed with ALS — amyotrophic lateral sclerosis. Also known as Lou Gehrig’s disease.
Richard’s entire right arm was the first casualty of the ravaging disease. It is completely paralyzed, his fingers impotent, still, devoid of possibility. The loss of his right hand feels to Richard like a death, the loss of true love, his divorce.
He knows with certainty that his left arm will go next. Taking with it not just his ability to play the piano, but his ability to care for himself. He will become completely dependent on others for the most basic functions of daily living.
Richard and Karina divorced three years ago. She removed their framed wedding picture from the living room wall and hung a mirror there instead. But that doesn’t mean she has moved on. Karina is also paralyzed — by excuses, fear, and justifications. Also an accomplished pianist, Karina is stuck in an unfulfilling life as a piano teacher. Afraid to pursue the career path she abandoned as a young woman, Karina blames Richard and their failed marriage for all of it.
As his condition worsens and he is no longer able to live on his own, Karina becomes his reluctant caretaker. Richard’s muscles, voice, and breath steadily fade as he and Karina seek to reconcile their past while they still have time.
Lisa Genova holds an undergraduate degree in Biopsychology and a Ph.D. in Neuroscience from Harvard University. She is the author of Still Alice, in which the protagonist, Alice Howland, is diagnosed with early-onset Alzheimer’s disease, and three other novels. In Every Note Played, she explores the devastating impact of ALS, an incurable neurodegenerative disease that affects nerve cells in the brain and the spinal cord, increasingly paralyzing its victim. As a result of the disease’s progression, the diaphragm becomes paralyzed, prohibiting respiration and causing death unless the patient opts to utilize a ventilator. However, eventually they are unable to even blink their eyes to communicate and become “locked in.” Only about 25% of people with ALS develop dementia, while the remaining 75% remain intellectually intact.
Genova was inspired to pen Every Note Played by Richard Glatzer who was diagnosed with ALS prior to directing the film version of Still Alice. He directed the film by typing with one finger into a text-to-speech app on his iPad. Genova was so inspired by Glatzer’s courage and determination that she asked his permission to write a book about ALS in his honor. He consented. Glatzer died in March 2015.
Every note played is a life and a death.
Every Note Played is an exquisite, profound, and moving story. Richard is only 45 years old when diagnosed with ALS. Cruelly, the disease claims his right hand first, then his entire right arm, then his left hand and arm. His career over and estranged from his father and brothers, Richard wastes valuable time in denial. But the incurable, swiftly progressive disease limits his options and before long, he can no longer live alone, much less in his fourth-floor walk-up condo. Via an unsparing first-person narrative, Richard details the deterioration of his motor function, loss of dignity, and fears about the inevitable further loss of functionality. Richard mourns the loss of his ability to make music. Most importantly, Richard confronts his own shortcomings as a husband and father, acknowledging his mistakes, finding emotional clarity, and concluding that, given his circumstances, the most he can hope for is to be forgiven both by Karina, his ex-wife, and Grace, their daughter.
Karina, also an accomplished pianist who gave up her own budding jazz career to raise Grace while Richard toured, reluctantly convinces him to move back into the family residence so that she can care for him. Like Richard, she must deal with her long-held anger, resentments, and justifications for her role in the disintegration of their marriage. She has not moved past their divorce because “making him wrong allows her to feel right, and feeling right is her drug of choice.” For Karina, blame and emotional stagnation have prevented her from pursuing her own dream, rendering her, in her own way, as paralyzed as Richard. As the strain of caring for Richard begins to take its toll on Karina, she comes to understand — with the assistance of Bill, Richard’s wonderful in-home health aide — that forgiving Richard has nothing to do with him and everything to do with her own well-being and power to move forward following Richard’s death. Bill counsels her that “in the end, it’s all about peace and peace of mind and closure. You’ve gotta get to forgiveness.”
The predictability of the story does not detract from its power. Despite all that ALS has mercilessly taken from him, Richard wants to live, but must make the most important decision of his life. As he becomes
increasingly debilitated and his physicians outline his medical options, it becomes clear that “it’s either his life or hers.” With her straight-forward, unflinchingly — indeed, sometimes brutally — honest approach to the subject matter, Genova takes readers on Richard, Karina, and Grace’s gut-wrenching journey with them. Every word of Every Note Played resonates and serves as an unforgettable reminder of the fragility of life and the importance of getting to forgiveness and resolution. Genova observes, “How many of us are good communicators? How many of us say, ‘I’m sorry,’ ‘I forgive you,’ ‘I love you’ to the people we need to say these things to? We think have forever. We don’t.”