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Every Note Played

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About The Book

“Unsparing in her depiction of the disease’s harrowing effects, neuroscientist Genova also celebrates humanity.” —People

“Sometimes it’s easier to tell truth in fiction…And she tells it with heart and hope.” NPR

“Her juxtaposition of scientific detail with compassionate, heartfelt storytelling is unparalleled.” Bookreporter

Every Note Played will grip and gut you.”The Boston Globe

From neuroscientist and New York Times bestselling author of Still Alice comes a powerful exploration of regret, forgiveness, freedom, and what it means to be alive.

An accomplished concert pianist, Richard received standing ovations from audiences all over the world in awe of his rare combination of emotional resonance and flawless technique. Every finger of his hands was a finely calibrated instrument, dancing across the keys and striking each note with exacting precision. That was eight months ago.

Richard now has ALS, and his entire right arm is paralyzed. His fingers are impotent, still, devoid of possibility. The loss of his hand feels like a death, a loss of true love, a divorce—his divorce.

He knows his left arm will go next.

Three years ago, Karina removed their framed wedding picture from the living room wall and hung a mirror there instead. But she still hasn’t moved on. Karina is paralyzed by excuses and fear, stuck in an unfulfilling life as a piano teacher, afraid to pursue the path she abandoned as a young woman, blaming Richard and their failed marriage for all of it.

When Richard becomes increasingly paralyzed and is no longer able to live on his own, Karina becomes his reluctant caretaker. As Richard’s muscles, voice, and breath fade, both he and Karina try to reconcile their past before it’s too late.

Poignant and powerful, Every Note Played is a masterful exploration of redemption and what it means to find peace inside of forgiveness.

Reading Group Guide

This reading group guide for Every Note Played includes an introduction, discussion questions, and ideas for enhancing your book club. The suggested questions are intended to help your reading group find new and interesting angles and topics for your discussion. We hope that these ideas will enrich your conversation and increase your enjoyment of the book.

Introduction

As an accomplished concert pianist, Richard received standing ovations from audiences all over the world. The last time that happened was eight months ago. Since then Richard has been diagnosed with ALS, and his right arm is paralyzed, leaving him unable to play.

Three years ago, Karina finalized her divorce with Richard, but she still hasn’t moved on. Karina is paralyzed by excuses and fear—stuck in an unfulfilling life as a piano teacher, afraid to pursue the path she abandoned as a young woman, and blaming Richard and their failed marriage for all of it.

When Richard becomes increasingly paralyzed and is no longer able to live on his own, Karina becomes his reluctant caretaker. As Richard’s muscles, voice, and breath fade, both he and Karina try to reconcile their past before it’s too late.

Poignant and powerful, Every Note Played is a heartbreaking exploration of regret, forgiveness, freedom, and what it means to be alive.

Topics & Questions for Discussion

1. Why do you think Lisa Genova chose the title Every Note Played for this novel? How did the title help your reading of the novel? Richard and Karina were both professional pianists. Describe how they relate to the music they played. Were there any notes or compositions that were particularly meaningful to them?

2. Karina wonders if she could “have seen the red flags through the thick haze of lust at twenty.” (p. 43) What do you think? Were there any warning signs that Richard wasn’t the person he seemed? Describe their early relationship. What initially drew Richard and Karina to each other?

3. Discuss the structure of Every Note Played. What’s the effect of having the chapters alternate between Richard’s life and Karina’s? Does it help you understand both of the characters? If so, how?

4. As he is performing, Richard remembers Karina telling him, “Being married is more than wearing a ring.” (p. 2) What triggers this memory for Richard? Explain Karina’s statement, particularly in light of her marriage to Richard. Were you surprised to learn the reasons for their divorce? What does being married mean to you?

5. Upon learning of Richard’s diagnosis, Karina pays him a visit. “She had such good intentions,” and wonders how it went “so wrong.” (p. 32) Describe the visit. Did you learn anything that surprised you about their relationship? What are Karina’s motivations for visiting Richard? Do you think that her intentions are good? Why or why not?

6. While Richard and Karina were both classically trained pianists, Karina’s true passion is playing jazz piano. What does she like about jazz? Why does Richard prefer classical music? Do their musical preferences reflect their personalities? How so?

7. Richard comes to think of Bill as “equal parts brother, doctor, parent, and friend.” (p. 96) What did you think of him? How does he help Richard preserve his sense of dignity and humanity? What’s effect does Bill have on Karina?

8. While Richard’s ALS is progressing, he reflects on how “in a million ways, living with ALS is a practice in the art of Zen.” (p. 98) For example, although Richard dislikes Broadway musicals, he does not tell Bill when Bill sings show tunes. Why not? Can you think of any other instances when Richard practices “the art of Zen”? What are they?

9. While visiting Richard, Karina reflects on how “the story of their lives can be an entirely different genre depending on the narrator.” (p. 29) Explain this statement. How would you characterize the story of Richard and Karina’s marriage as told from Karina’s perspective? What about Richard’s? Are there any other instances in Every Note Played when two characters experience the same event completely differently based on their perspective? What are they?

10. Who is Alexander Lynch? Describe his performance. How is seeing it a transformative experience for Karina? Explain why Karina originally resisted going on the trip where she encounters Alexander. Do you agree with her rationale? Why or why not?

11. Describe Richard’s relationship with his brothers. Why is he reluctant to tell them of his diagnosis? What did you think of Tommy and Mikey? Were you surprised by Tommy’s apology? Explain your answer. How does Tommy’s apology and the ensuing conversation help Richard see another side of his brothers? Why might Richard’s “big, brave, tough jock brothers [be] scared of their father, too”? (p. 221)

12. Upon hearing that Grace has told her boyfriend that Karina is “an amazing pianist,” Karina is “caught surprised, moved that Grace would describe her this way.” (p. 38) Describe Karina’s reaction to Grace’s praise. Why did Karina give up her career? How much blame, if any, does Richard deserve? What does Karina think?

13. Describe Dr. George. How is Dr. George able to relate to Richard and put him at ease? Dr. George suggests that Richard consider recording “legacy messages.” What are they? What does Richard think about them? Discuss legacy messages with your book club. If you were in Richard’s situation, for whom would you want to record these messages? What would your messages say?

14. At the clinic, the practitioners use the term care, “and Richard doesn’t openly object but care is not provided every three months when he comes for his appointment.” (p. 51) Why does Richard continue to go to the clinic? Does Richard’s opinion regarding the “care” that he gets at the clinic change? If so, why? Are there different ways to provide care? What kind of care does Kathy provide to Richard? Compare and contrast it with the care that Bill and Karina provide him.

Enhance Your Book Club

1. When Richard first listens to jazz, “The compositions are scribbles, run-on sentences without proper grammar and no punctuation.” (p.224-225) Listen to jazz, including some of the artists that Richard does, such as Miles Davis, Herbie Hancock, and John Coltrane, with your book club. Did you like what you heard? Discuss your thoughts with your book club.

2. Karina bakes makowiec for her family’s Christmas Eve dinner. Find a Polish recipe and try it with your book club. What do you think of it? Do you have any culinary traditions associated with the holidays? Share them with your book club. Why do you think Richard asks Karina to feed him some of the makowiec?

3. Listen to Maurice Ravel’s Piano Concerto for the Left Hand with your book club. Did you enjoy it? Why is this musical composition particularly meaningful to Richard? Are there any musical compositions that hold a special place in your heart? What are they?

4. To learn more about Lisa Genova, read more about her other books, and find out when she will be in a city near you, visit her official site at www.LisaGenova.com.

A Conversation with Lisa Genova

How did the experience of writing Every Note Played compare to your previous writing experiences? Your previous novels have been critically acclaimed New York Times bestsellers—did you feel added pressure while writing this one?

I wrote this book much faster than any of my other books. Eight of the people I’d come to know with ALS died before I finished the final draft. This disease can move with alarming speed, and I think this lent a sense of urgency while I was writing, that I couldn’t write fast enough. I was very much aware that many of these new friends of mine would die before they had the chance to read what they had helped me create. I penned the first draft of Every Note Played in less than a year, and it came out of me almost fully formed.

The only pressure comes from the sense of enormous responsibility I feel to the people living with these conditions and diseases. ALS is brutally unfair, cruelly debilitating, shockingly fast, and deadly. For the families who invited me into their lives at their most vulnerable, who shared their fears and hopes and tears and naked truths, and for every family traveling a similar journey, I want to make the best use of what they so generously gave me. I want to make them proud. I want this story to expand the world’s consciousness of ALS beyond the ice buckets, to generate a compassionate awareness that contributes to better resources for care and research that leads to treatments and ultimately an end to this hideous disease.

Many of your novels center around neurodegenerative diseases. Why did you decide to focus on ALS in this novel?

This book began with Richard Glatzer, who, along with his husband Wash Westmoreland, wrote and directed the film Still Alice. Richard had bulbar ALS, which means that his symptoms began in the muscles of his face and neck. I never heard the sound of Richard’s voice. He brilliantly codirected Still Alice by typing with one finger on an iPad. Shortly after the film premiered at the Toronto International Film Festival, I told Richard that I wanted to write about ALS next and asked him if he would help me understand some of what he’s experiencing. He was all in. We communicated by email. At this point, both of Richard’s arms were paralyzed. He wrote to me with his big toe. I am forever grateful to him for all he gave to the creation of the film Still Alice, for sharing with me what it feels like to live with ALS, for showing us all what grace and courage look like, for not giving up on his dreams. Richard died on March 10, 2015, shortly after Julianne Moore won the Oscar for Best Actress.

Were there other people who informed your research?

As with all of my books, I do intensive research. My goal is to tell the truth under the imagined circumstances, so I need to know the details in detail. This can’t be done in a Google search. I came to know thirteen people living with ALS, all in various stages of the disease, from less than a week after diagnosis to the day some passed away. Eight of the thirteen died before I finished writing this story. I’m honored, humbled, and forever changed by knowing all of these beautiful people and their families, grateful for every exquisitely intimate insight they shared with me. I became particularly close to Kevin Gosnell (and his family), Chris Engstrom, and Chris Connors, and miss them immensely. I shadowed neurologists James Berry and Merit Cudkowicz and nurse practitioner/codirector Darlene Sawicki at the ALS Clinic at Massachusetts General Hospital; I had countless invaluable conversations and road trips to the beds and living rooms of people living with ALS with Ron Hoffman, founder, director, and hero of Compassionate Care ALS; I interviewed Jamie and Ben Heywood, who lost their brother to ALS (their family’s story is profiled in the film So Much So Fast and in the book His Brother’s Keeper: A Story from the Edge of Medicine by Jonathan Weiner); I spent time with Rob Goldstein and the amazing folks at ALS TDI; I visited Steve Saling and Patrick O’Brien at the Leonard Florence Center for Living; (see Patrick’s documentary TransFatty Lives); I learned about Hospice care from Kathy Bliss and augmentative communication options from John Costello; I FaceTimed with folks who didn’t live near me, as far away as British Columbia.

Can you tell us about your writing process? Did knowing that ALS is a terminal illness affect the way that you wrote? Were there any turns that the plot took that surprised you?

The process for this book was similar to every book I write. I frontload with several months of pure research, and then I continue the research while writing. For more on my research and writing processes, see my blog:

https://www.lisagenova.com/single-post/2014/04/15/Lisas-6-Rules-of-Research

https://www.lisagenova.com/single-post/2014/02/19/Lisas-10-Rules-of-Writing

Knowing so many people with ALS who were approaching their imminent deaths and facing it with them definitely affected the way I chose to write this novel. Although I’d touched on mortality and death in all of my previous books, death is almost an unavoidable main character in a story about ALS. There’s no dancing around it. I had many candid conversations about death and dying with the people I knew with ALS, and I read many books on this topic, including When Breath Becomes Air by Paul Kalanithi, Being Mortal by Atul Gawande, The Tibetan Book of Living and Dying by Sogyal Rinpoche, Awake at the Bedside by Koshin Paley Ellison and Matt Weingast, and How We Die by Sherwin B. Nuland.

Plot turns that took me by surprise? I was shocked when Richard’s father died. I did NOT see that coming!

Do you have any favorite scenes in Every Note Played? What are they?

My favorite scenes were:

The “This One Smells Like Cherries” fight between Richard and Karina

Every scene with Bill

The chapter with Richard’s brothers

Music plays an important role in the lives of Richard and Karina, and you wrote about each of their styles with such authenticity. How did you accomplish this? What were you listening to while you wrote?

I knew very little about classical and jazz piano before writing Every Note Played, but that had to change if I was going to write about playing, hearing, and loving piano from the perspectives of these highly trained pianists with any believability. I read Thinking in Jazz: The Infinite Art of Improvisation by Paul Berliner, Miles: The Autobiography by Miles Davis, and Journey of a Thousand Miles by Lang Lang. I saw and heard Jeremy Denk play classical piano in Miami, Joey Alexander play jazz in Boston, and Wynton Marsalis play jazz in New Orleans. I watched many YouTube videos of pianists. My favorite is Vladimir Horowitz. I interviewed several professional pianists, including Simon Tedeschi, Jesse Lynch, David Kuehn, and Dianne Goolkasian Rahbee. And I took piano lessons from Monica Rizzio and Abigail Field! I often listened to Bach, Schumann, Chopin, Debussy, and Liszt while writing this story. You can find a playlist with all of the classical pieces mentioned in Every Note Played at my website: www.LisaGenova.com

What would you like your readers to take away from Every Note Played?

Maybe prior to reading Every Note Played, readers read Tuesdays with Morrie, watched The Theory of Everything, or dumped buckets of ice water over their heads. They probably had some awareness of ALS. I hope they now have a deeper and more compassionate understanding of what it feels like to live and die with this disease.

Also, when people think about ALS, their first thoughts and fears focus on the horror of not being able to move or speak, on being locked in. Alongside Richard’s ALS, we additionally saw the many ways he and Karina were stuck in narratives of blame, fear, and excuses, trapped in psychological and emotional prisons. Before ALS steals Richard’s ability to speak, both were perfectly capable of saying anything. Their voices were physically intact. And yet, they weren’t able to say what needed to be said to set each other free, to speak the needed words of apology, to offer forgiveness. I hope readers also use this story to reflect on the ways in which they might be paralyzed in their own lives, and maybe with a shift in perspective, they’ll see that “the door is so wide open.”

Are you working on anything now? Can you tell us about it?

I’m writing a nonfiction book about memory. My next novel will be about bipolar disorder. Oh, and I’m right now re-reading the script for Inside the O’Briens! J

About The Author

credit to Greg Mentzer
Lisa Genova

Acclaimed as the Oliver Sacks of fiction and the Michael Crichton of brain science, Lisa Genova is the New York Times bestselling author of Still Alice, Left Neglected, Love Anthony, Inside the O’Briens, and Remember: The Science of Memory and the Art of Forgetting. Still Alice was adapted into an Oscar–winning film starring Julianne Moore, Alec Baldwin, and Kristen Stewart. Lisa graduated valedictorian from Bates College with a degree in biopsychology and holds a PhD in neuroscience from Harvard University. She is featured in the documentary films To Not Fade Away and Have You Heard About Greg. Her TED talks on Alzheimer’s disease and memory have been viewed over eleven million times.

Product Details

  • Publisher: Gallery/Scout Press (March 20, 2018)
  • Length: 320 pages
  • ISBN13: 9781476717821

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