48 pages • 1 hour read
Lisa GenovaEvery Note Played
Fiction | Novel | Adult | Published in 2018A modern alternative to SparkNotes and CliffsNotes, SuperSummary offers high-quality Study Guides with detailed chapter summaries and analysis of major themes, characters, and more.
Background
Authorial Context: Lisa Genova
Lisa Genova is an American neuroscientist with a PhD from Harvard University. She has written several novels offering personal perspectives on various neurological diseases and disorders. Her self-published 2007 debut novel, Still Alice, centers on a Harvard professor who develops early-onset Alzheimer’s disease. The book was adapted into a film starring Julianne Moore, who won an Academy Award for Best Actress for her performance. Genova’s next novel, Left Neglected, follows the narrative of a woman who experiences reduced sensory awareness of half of her body following a car accident. Published in 2012, Genova’s third novel, Love Anthony, traces one woman’s journey to healing after the death of her son, who was diagnosed with autism. Inside the O’Briens, Genova’s fourth novel, features a family grappling with the effects of Huntington’s disease, a heritable neurodegenerative disease. Genova went on to publish her fifth novel, Every Note Played, in 2018; here, she examines a concert pianist’s complex journey of loss and healing after he is diagnosed with ALS.
In addition to writing fiction, Genova offers expertise and advocacy related to neurological diseases in other ways. In 2021, Genova published Remember: The Science of Memory and the Art of Forgetting, a nonfiction book that provides a thorough exploration of the mechanics of human memory, including insights that can improve memory. She has appeared as a guest speaker on TODAY, The Diane Rehm Show, The Dr. Oz Show, PBS NewsHour, and CNN. Overall, her work promotes both empathy for others and preventative self-care.
Medical Context: Amyotrophic Lateral Sclerosis
Central to the plot of Every Note Played is the protagonist’s diagnosis with amyotrophic lateral sclerosis (ALS), also known as motor neurone disease or Lou Gehrig’s disease. ALS is a terminal disease that causes the gradual loss of motor neurons that facilitate muscle control, eventually leading to paralysis. More than 90% of cases are sporadic, meaning they have no known cause, while the remaining cases are inherited genetically. Globally, somewhere between 1.5 and 3 people per 100,000 are diagnosed with ALS each year. Medication can slow the progression of symptoms, but there is no known cure. On average, people diagnosed with ALS survive two to four years following the onset of the disease, which typically occurs in middle age.
The symptoms of ALS first manifest in one of two ways. Bulbar-onset ALS starts with difficulty speaking or swallowing, while limb-onset ALS starts with weakening arms and legs; Richard Evans, the protagonist of Every Note Played, experiences the latter since his earliest symptom involves twitching in his right arm. As time passes, weakness and loss of control spread throughout the body until the person diagnosed with ALS has difficulty walking, eating, speaking, and breathing.
Various medical devices may be prescribed to manage the severity of symptoms, including walkers and wheelchairs to preserve mobility, non-invasive ventilation to support breathing, a feeding tube, and augmentative communication devices. Richard employs most of these at various points in the novel.
Publicly, ALS is often associated with various high-profile individuals. These include theoretical physicist Stephen Hawking, who was diagnosed at the age of 21 and lived with ALS for 55 years, a rare but not unheard-of outcome. Famous baseball player Lou Gehrig first drew public attention to the disease when he was diagnosed by the Mayo Clinic in 1939. Other well-known people living with the disease are football player Steve Gleason and singer Roberta Flack. Initiatives such as the ALS ice bucket challenge that went viral on social media in 2014 have also served to raise public awareness of ALS, as well as invite donations for research. Within this context, Every Note Played offers an accessible, yet deeper, look for those who may only be aware of ALS in a general sense.
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