Ask the Author: Lisa Genova
Answered Questions (18)
Lisa Genova
Hi Jennifer. Thank you so much. I'm sorry you lost both grandfathers to Alzheimer's. My grandmother had Alzheimer's, and I had such a hard time staying connected to her. I had sympathy but not empathy. I kept wondering, "What does is feel like to have this from her perspective?" I couldn't get to an answer. Two years after she passed away, I rearranged my life to answer that question. I'm so glad Still Alice was able to help you.
So Still Alice was inspired by my experience with my grandmother. Left Neglected was inspired by curiosity. I'd read about left side neglect, or hemispatial neglect, many times during my training as a neuroscientist, including in a brief chapter of The Man Who Mistook His Wife for a Hat by Oliver Sacks. But I couldn't wrap my mind around it. Again, what does it feel like to have this bizarre condition, to walk through a whole world only aware of half of it?
Love Anthony was inspired by my beloved cousin's son, Anthony. He has a twin sister and is the same age as my oldest daughter, and their first few years were spent together. Anthony's autism is quite severe, and at 17 years old, he still doesn't speak. We have examples of what it feels like to live with autism from the Asperger's end of the spectrum--great books by Temple Grandin and John Elder Robison. But what about Anthony's end of the spectrum? I wanted to give a voice to the voiceless. Thank you for all that you do for people with autism.
Inside the O'Brien's was inspired by a desire to raise awareness about Huntington's disease. In February 1993, when I was 22 years old and working as a lab technician in a lab at MGH east in Charlestown, MA, the neuroscientists down the hall started celebrating. They'd just isolated the genetic mutation that causes Huntington's. I remember getting the chills, knowing I'd just witnessed a historic moment in science, and thinking that we'll soon see a cure for this disease. 25 years later, we still have no disease-modifying treatments or cure. I wrote Inside the O'Brien's to raise awareness and a sense of urgency. And I set the story in Charlestown as a nod to those amazing scientist who still work tirelessly, never giving up hope.
Every Note Played was inspired by Richard Glatzer, the co-director of the film Still Alice, who had bulbar ALS. He co-directed Still Alice unable to speak, typing on an iPad. I was so moved by his courage, his generosity, the resilience of his spirit. He died a few days after Julianne Moore received her Oscar for best actress.
Thanks and xo
So Still Alice was inspired by my experience with my grandmother. Left Neglected was inspired by curiosity. I'd read about left side neglect, or hemispatial neglect, many times during my training as a neuroscientist, including in a brief chapter of The Man Who Mistook His Wife for a Hat by Oliver Sacks. But I couldn't wrap my mind around it. Again, what does it feel like to have this bizarre condition, to walk through a whole world only aware of half of it?
Love Anthony was inspired by my beloved cousin's son, Anthony. He has a twin sister and is the same age as my oldest daughter, and their first few years were spent together. Anthony's autism is quite severe, and at 17 years old, he still doesn't speak. We have examples of what it feels like to live with autism from the Asperger's end of the spectrum--great books by Temple Grandin and John Elder Robison. But what about Anthony's end of the spectrum? I wanted to give a voice to the voiceless. Thank you for all that you do for people with autism.
Inside the O'Brien's was inspired by a desire to raise awareness about Huntington's disease. In February 1993, when I was 22 years old and working as a lab technician in a lab at MGH east in Charlestown, MA, the neuroscientists down the hall started celebrating. They'd just isolated the genetic mutation that causes Huntington's. I remember getting the chills, knowing I'd just witnessed a historic moment in science, and thinking that we'll soon see a cure for this disease. 25 years later, we still have no disease-modifying treatments or cure. I wrote Inside the O'Brien's to raise awareness and a sense of urgency. And I set the story in Charlestown as a nod to those amazing scientist who still work tirelessly, never giving up hope.
Every Note Played was inspired by Richard Glatzer, the co-director of the film Still Alice, who had bulbar ALS. He co-directed Still Alice unable to speak, typing on an iPad. I was so moved by his courage, his generosity, the resilience of his spirit. He died a few days after Julianne Moore received her Oscar for best actress.
Thanks and xo
Lisa Genova
Thank you, Maureen! I took piano lessons as a child but never developed a passion for it. I practiced because my mother told me to and went to weekly lessons for a few years against my will--basically, I was one of Karina's students! :) So for this book, I needed to roll up my sleeves and learn more about classical and jazz piano in order to write about it with any authenticity.
I interviewed many pianists (including two who were trained at Julliard and Simon Tedeschi); I read books about jazz and Lang Lang; I went to New Orleans and soaked in live jazz; I went to many piano concerts; I listened to classical music as I wrote; and I took piano lessons! This time, I was an eager student and looked forward to every lesson I could take! Karina would've loved me! :)
I interviewed many pianists (including two who were trained at Julliard and Simon Tedeschi); I read books about jazz and Lang Lang; I went to New Orleans and soaked in live jazz; I went to many piano concerts; I listened to classical music as I wrote; and I took piano lessons! This time, I was an eager student and looked forward to every lesson I could take! Karina would've loved me! :)
Lisa Genova
Always several at once! Right now, I'm reading a text book on memory for research purposes, Tribe of Mentors by Tim Ferriss for inspiration, and Little Fires Everywhere by Celeste Ng for pure indulgence.
Lisa Genova
Thank you for all that you do to advocate for people with autism. I had no ambition or plan to be a writer. When my grandmother had Alzheimer's, I was desperate to better understand this disease. I read scientific research papers, medical texts, and self-help books like The 36 Hour Day. All were helpful for understanding the disease and learning how to be a better caregiver, but I still had little understanding of HER. What did it feel like to be her? I had sympathy but not empathy. I remember thinking--Fiction is a place where we can explore empathy, where we have the chance to walk in someone else's shoes. So that was the seed for STILL ALICE. But I still wasn't a writer! The decision to make that jump came several years later on the heels of a heartbreaking divorce and in honest answer to this question: "If I could do anything I wanted, and I didn't have to care what anyone thought of me, what would I do?" My answer: Write the novel.
I describe the jump and journey in more detail in this 13 minute talk:
https://www.theatlantic.com/health/ar...
Good luck with you studies!
I describe the jump and journey in more detail in this 13 minute talk:
https://www.theatlantic.com/health/ar...
Good luck with you studies!
Lisa Genova
Thank you so much! No, the characters in my books aren't actually anyone I know. I make them up! That said, STILL ALICE was inspired by my nana who had Alzheimer's in her eighties; LOVE ANTHONY was inspired by my cousin Anthony who has autism; EVERY NOTE PLAYED was inspired by Richard Glatzer, co-director of the film STILL ALICE who had ALS. And with every book, I do extensive research and come to know many people living with the neurological diseases and conditions I'm writing about. For example, while writing STILL ALICE, I came to know 27 people living with early onset and/or early stage Alzheimer's. While Alice Howland's Alzheimer's was informed by what I learned from these incredibly generous people, her character is uniquely hers.
Lisa Genova
My next book will be about memory--my first nonfiction title. My next novel will be about a woman with bipolar disorder. Beyond that, I don't know, but I trust that life lead me there.
The piano lessons! I'd taken lessons as a child and loathed everything about it. Youth IS wasted on the young! :) For the past many years now (I'm 47), I've been wanting to really learn how to play. But with three kids, books to write, books to promote, and life to live, I couldn't justify the time. When I decided to make my two main characters in EVERY NOTE PLAYED pianists, I suddenly had the perfect excuse!
I did a similar thing with INSIDE THE O'BRIENS. For years, I'd been wanting to do a 200-hour yoga teacher training. In order for me to write authentically about Katie O'Brien the yoga teacher, I HAD to do the training. Right? :)
Hmm, what do I want to learn next? :)
The piano lessons! I'd taken lessons as a child and loathed everything about it. Youth IS wasted on the young! :) For the past many years now (I'm 47), I've been wanting to really learn how to play. But with three kids, books to write, books to promote, and life to live, I couldn't justify the time. When I decided to make my two main characters in EVERY NOTE PLAYED pianists, I suddenly had the perfect excuse!
I did a similar thing with INSIDE THE O'BRIENS. For years, I'd been wanting to do a 200-hour yoga teacher training. In order for me to write authentically about Katie O'Brien the yoga teacher, I HAD to do the training. Right? :)
Hmm, what do I want to learn next? :)
Lisa Genova
Thank you so much, Sarah. I typically do 4-6 months of research before I begin writing. This involves reading text books, scientific research papers, and nonfiction accounts; watching documentary and educational films; interviewing/shadowing scientists and the medical community (general practice physicians, neurologists, nurses, genetic counselors, rehab specialists, speech pathologists, occupational therapists, Hospice workers); spending time with people who have the diseases/conditions and their families and caregivers. I continue doing the research--spending time with families, looping back with doctors--over the next year plus that I'm actually writing the story. EVERY NOTE PLAYED is my most intensively researched book to date. I'm always trying to tell the truth under the imagined circumstances of the story, and I feel an enormous responsibility to get the facts right.
I also research other aspects of the book. So for example, in EVERY NOTE PLAYED, the two main characters are pianists. So I interviewed concert, classical, and jazz pianists; I went to piano concerts; I read books about classical piano and jazz; I spent time listening to jazz in New Orleans; I listened to music as I wrote; and I actually took piano lessons!
I also research other aspects of the book. So for example, in EVERY NOTE PLAYED, the two main characters are pianists. So I interviewed concert, classical, and jazz pianists; I went to piano concerts; I read books about classical piano and jazz; I spent time listening to jazz in New Orleans; I listened to music as I wrote; and I actually took piano lessons!
Lisa Genova
Hi Barbara! YES--I just did! My next book, EVERY NOTE PLAYED, is told in 2 perspectives. We have the POV of Richard the concert pianist with ALS and the POV of Karina, his ex-wife who becomes his reluctant caregiver. And this story belongs just as much to her as it does to Richard.
Lisa Genova
Hi Marianne--Thanks so much for sharing a bit of your experience here. Do you write about your experience with TBI and how you have survived and thrived in a new normal--any links we can share with readers here? Thank you for using your experience to help others who might travel a similar road, to help everyone become familiar with what might've been previously unfamiliar. Familiarity fosters acceptance, respect, empathy, community.
I did write about TBI! :) My second book, LEFT NEGLECTED, is about a woman who suffers a TBI in a car accident and then lives with a condition called Left Neglect (or hemispatial neglect). The book is about discovering and accepting a new normal, paying attention to what truly matters, nourishing a well-lived life.
I did write about TBI! :) My second book, LEFT NEGLECTED, is about a woman who suffers a TBI in a car accident and then lives with a condition called Left Neglect (or hemispatial neglect). The book is about discovering and accepting a new normal, paying attention to what truly matters, nourishing a well-lived life.
Lisa Genova
Like all of my books, this one starts with a neurological crisis. EVERY NOTE PLAYED is about ALS. While most people are familiar with those three letters in some way—maybe you dumped a bucket of ice water over your head or you saw a movie about Stephen Hawking or Steve Gleason or maybe you know someone—most people have little or no experience actually feeling what it feels like to live and die with this disease. And so in EVERY NOTE PLAYED, we go there.
When learning about the details of ALS, most people are immediately terrified at the thought of two things:
1. Being paralyzed
2. Not being able to speak
Being locked in. And yet, how many of us are stuck, paralyzed in our lives in some way because we’ve built a fortress of fear, blame, and excuses around something? We’re not doing the thing that we most want to do; we’re not taking the steps; we’re not starting something or finishing something. We’re stuck. Paralyzed without ALS.
And I can say anything I want. I don’t have ALS. My voice works just fine. Yours probably does, too. But 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.
So EVERY NOTE PLAYED is about these things. It’s about ALS, and it’s about the ways in which we don’t dare to do what we really want to do, and we don’t say what we need to say. And maybe we don’t have forever. It’s about regret and forgiveness. It’s about living and dying. It’s about letting go and setting yourself free.
When learning about the details of ALS, most people are immediately terrified at the thought of two things:
1. Being paralyzed
2. Not being able to speak
Being locked in. And yet, how many of us are stuck, paralyzed in our lives in some way because we’ve built a fortress of fear, blame, and excuses around something? We’re not doing the thing that we most want to do; we’re not taking the steps; we’re not starting something or finishing something. We’re stuck. Paralyzed without ALS.
And I can say anything I want. I don’t have ALS. My voice works just fine. Yours probably does, too. But 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.
So EVERY NOTE PLAYED is about these things. It’s about ALS, and it’s about the ways in which we don’t dare to do what we really want to do, and we don’t say what we need to say. And maybe we don’t have forever. It’s about regret and forgiveness. It’s about living and dying. It’s about letting go and setting yourself free.
Lisa Genova
Hi Stephanie! I have no plans to write about deafness. Have you read Far from the Tree by Andrew Solomon? He writes a BEAUTIFUL chapter about being Deaf and the Deaf culture. I highly recommend!
Lisa Genova
Yes, I have and will likely write one. Before I was a novelist, I was a neuroscientist, and all of my research was on the molecular neurobiology of drug addiction. Here are some of the papers I published--the kind of writing I did before writing fiction!
https://www.researchgate.net/scientif...
https://www.researchgate.net/scientif...
Lisa Genova
I really don't believe in writer's block. This is not to say that I don't feel terrified every time I sit down to write, especially in the first third of a first draft.
WHAT HAPPENS NEXT? I DON'T KNOW! WHAT IF THIS NEXT CHAPTER SUCKS? WHAT IF THE WHOLE BOOK SUCKS? WHO IS THE MAIN CHARACTER--HOW DOES SHE THINK, TALK, MOVE? WHAT DOES SHE REALLY WANT? I DON'T KNOW HER YET!
I definitely feel the fear. BUT I STAY IN THE SEAT. That's the key. I don't let the waves of adrenaline begging for flight win. This is where yoga helps. Be still and breathe. Let the panic pass. Don't be reactive. Katie O'Brien in INSIDE THE O'BRIENS says, "Be the thermostat, not the temperature." And I stay in the seat. I also take pen to paper when this happens. I write stream of consciousness until the panic subsides. It always does.
WHAT HAPPENS NEXT? I DON'T KNOW! WHAT IF THIS NEXT CHAPTER SUCKS? WHAT IF THE WHOLE BOOK SUCKS? WHO IS THE MAIN CHARACTER--HOW DOES SHE THINK, TALK, MOVE? WHAT DOES SHE REALLY WANT? I DON'T KNOW HER YET!
I definitely feel the fear. BUT I STAY IN THE SEAT. That's the key. I don't let the waves of adrenaline begging for flight win. This is where yoga helps. Be still and breathe. Let the panic pass. Don't be reactive. Katie O'Brien in INSIDE THE O'BRIENS says, "Be the thermostat, not the temperature." And I stay in the seat. I also take pen to paper when this happens. I write stream of consciousness until the panic subsides. It always does.
Lisa Genova
I'm really excited to roll up my sleeves and begin the research on bipolar for my next novel. I think it's going to be an intense education.
Lisa Genova
Yes. I live on Cape Cod, and Lyme disease is frighteningly pervasive here. It's definitely on the list!
Lisa Genova
My next novel will be about a woman with bipolar. And addiction is definitely on the list. I spent six years doing research on the molecular neurobiology of addiction--at Harvard, Mass General Hospital, and the NIH. Someday, I'll return to that world, this time in the form of fiction. Thank you!
Lisa Genova
EVERY NOTE PLAYED 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 head and neck. I never heard the sound of Richard’s voice. He brilliantly codirected Still Alice by typing with one finger on an iPad. When we began corresponding about what it feels like to live with ALS, he was typing his letters 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 for her role in the film.
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 for her role in the film.
Lisa Genova
Hi Taija--Yes! My next novel will be about someone with bipolar disorder, told from her perspective. Schizophrenia is definitely on my radar as well.
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