by Lisa Genova
I met Chris Connors at the ALS clinic at Massachusetts General Hospital six days after his ALS diagnosis. I was struck by how calm and laugh-out-loud funny he was given his situation. I adored him immediately and asked if we could stay in touch. We spent the next many months corresponding by email. His “ALS Diary” was intimate, vulnerable, heartbreaking, and hilarious. I laughed and cried through most of his emails.
Chris, thank you for sharing your humor, how much you loved Emily and your boys, your fears, your courage, and so many specifics of dealing with the losses that come with ALS. I feel incredibly lucky to have known and loved you. Chris died on December 9, 2016. I encourage you all to Google his obituary.
I met Chris Engstrom at his parents’ house on Cape Cod. He was my age, handsome, scrawny, his strangled voice mostly unintelligible. He was an artist educated at Yale and loved hiking in the woods, but he could no longer walk or hold a paintbrush in his hands. The hiking boots on his paralyzed feet broke my heart. But he could raise his eyebrows to say yes, and he could still communicate—at first using a rollerboard strapped to his arm, his hand placed by someone else onto a computer mouse, later with only his eyes using a Tobii. He had a beautiful smile and a twinkle in his eyes—I’m pretty sure he was flirting with me.
Chris became my dear friend. Thank you, Chris, for sharing your fears and frustrations and anger, your hopes and beliefs and love. I’m in awe of your artwork and poetry. I’m still envious of your writing! Thank you for reading the first many chapters of this book, for offering me insights and spot-on feedback, for not letting me get lazy with even one word. I love and miss you. Chris Engstrom died on May 7, 2017.
Enormous gratitude also goes to Bobby Forster, Steve Saling, Sue Wells, Janet Suydam, David Garber, Arthur Cohen, Chip Fanelli, and Lawrence Jamison Hudson. Thank you for your generosity and trust, for sharing your experiences and perspectives, for helping me understand ALS for this book, and for sharing wisdom beyond the pages of this story.
Thank you, Kathy Gosnell, Rebecca Brown George, Casey Forster, Ginny Gifford, Joyce Siberling, Jamie Heywood, Ben Heywood, and Sue Latimer, for so generously sharing your experiences with ALS. Your love and support for your husbands, brother, and friend are extraordinary and inspiring.
Thank you, Dr. Merit Cudkowicz, Dr. James Berry, and Darlene Sawicki, NP, for allowing me to shadow you at the ALS clinic at Massachusetts General Hospital, for answering every question I asked, for helping me understand the clinical picture of ALS. It would be easy to imagine a team such as yours needing to build emotional walls. There is no cure for this disease. You witness too much heartbreak, loss, and death. I’m utterly amazed by all of you, so grateful for the kindness, dignity, and humanity you give to every patient, every day, above and beyond the call of pure medical care. You are all heroes.
And then there is Ron Hoffman. Ron is the founder and executive director of Compassionate Care ALS, an organization that provides much-needed guidance, equipment, and comfort to overwhelmed families traveling this unfamiliar, complex, difficult journey. He is an angel and a hero, and I’m beyond grateful to call him my dear friend. He is also the author of Sacred Bullet. Everyone should read this important book. Ron, thank you for inviting me into your world, for the many road trips and house calls, for showing me this beautiful work that you do, for teaching me so much about ALS, living, and dying. You are a gift to every person who is lucky enough to know you, including me. For more information on Compassionate Care ALS, go to www.ccals.org.
Thank you to Erin MacDonald Lajeunesse, Kristine Copley, and Julie Brown Yau of Compassionate Care ALS and Rob Goldstein of ALS TDI for sharing what you know about caring for people with ALS and for introducing me to people who have it. Thank you to John Costello for showing me all the fascinating, creative tools people with ALS can use to continue communicating as they become increasingly paralyzed. Thank you for all that you do to help people with ALS stay connected, for preserving their voices. Thank you to Kathy Bliss for helping me understand the important role of Hospice and palliative care.
Thank you, Abigail Field and Monica Rizzio for the wonderful piano lessons. For insights into classical piano, jazz piano, and life as a concert pianist, enormous thanks to Abigail Field, David Kuehn, Dianne Goolkasian Rahbee, Jesse Lynch, and Simon Tedeschi.
Thanks and love to Anabel Pandiella, John Genova, Louise Schneider, and Joe Deitch for taking me to piano concerts; to Gosia Mentzer and Anna O’Grady for answering many questions about Poland; to Jen Bergstrom, Alison Callahan, and Vicky Bijur for your insightful edits and for championing this story.
Enormous thanks and love to my phenomenal publishing team at Scout Press: Carolyn Reidy, Jen Bergstrom, Alison Callahan, Brita Lundberg, Meagan Harris, Diana Velasquez, Jennifer Robinson, Abby Zidle, and Mackenzie Hickey. Thanks and love also to my badass assistant, Kristin Walsh.
Love and gratitude to my team of early readers: Anne Carey, Laurel Daly, Mary MacGregor, Kim Howland, Kate Racette, and Danny Wallace. Thank you for reading the chapters as I wrote them, for going on this ALS journey with me, for your unwavering love and support.
Thanks and so much love to Sarah Swain, James Brown, Joe Deitch, Merit Cudkowicz, Ron Hoffman, and Kathy Gosnell for reading the manuscript and offering invaluable feedback.
AUTHOR’S NOTE
In May 2017, about the same time that I finished the final draft of this book, the FDA approved a new drug for the treatment of ALS. Radicava became available by prescription to patients in August 2017, as this book goes to press. Administration will be by intravenous infusion in twenty-eight-day cycles and cost $1,000 per infusion. We don’t yet know whether insurance will cover this. In a trial in Japan, Radicava slowed a decline in physical symptoms by 33 percent.
A Scout Press Reading Group Guide
Every Note Played
Lisa Genova
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, Richa
rd 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 countl
ess 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: