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Author Lisa Genova on 'Every Note Played'

Interview with Lisa Genova by Phil Bolsta

 
Watch Lisa Genova’s interview:

 
Welcome, Lisa. Thank you for joining us today.

Thanks for having me, Phil.

 
Allow me to introduce you. Acclaimed as the Oliver Sacks of fiction and the Michael Crichton of brain science, Lisa Genova has captured a special place in contemporary fiction, writing stories that are equally inspired by neuroscience and the human spirit. She is author of five
New York Times bestselling novels, including her latest book, Every Note Played. And could you hold up that book, Lisa?

Just so happen to have it.

 
And I understand the paperback version is coming out very soon.

Yes, January 29.

 
Just a couple days from now. Well, Lisa, I really enjoyed reading
Every Note Played for the same reason I enjoyed reading your other books — the emotional life of each character is so rich and resonant, and the emotional intimacy between characters is so genuine and true to life. How did you get so wise at understanding the human condition with such depth and clarity, and how did you get so skilled at articulating it with such precision and power?

Oh, my gosh, Phil, thank you so very much. And it's so fun to be in conversation with you again. I think you were the very first video interview I ever did in my life way back when Still Alice was still self-published. So it's fun to be back with you.

I don't exactly know, I don't have any training as a writer. My training is in neuroscience. I used to do brain research. And then when I made the switch over to writing novels, you know, I read everything I could about writing craft and I learned a lot. So I kind of think of myself as a lifelong student. And so, I read Stephen King's On Writing; Natalie Goldberg's Writing Down the Bones; Bird by Bird by Anne Lamott; Julia Cameron, The Artist's Way; and The Sound of Paper.

I learned about how to construct a story. I also learned a lot about writing through acting. So while I was writing Still Alice I also trained as an actress, and I found that a lot of the principles of acting apply really well to understanding characters and human beings. So you learn that everybody wants something — and who gets it, and who doesn't, and why? How are people changed by what happens? Only growth and conflict are interesting. What else did we learn? You're always telling the truth under the imagined circumstances.

And so I know what these stories about neurological diseases and conditions... they can't be about the neurological diseases and conditions. Let me explain. So, if I'm going to write about Alzheimer's, Huntington's, traumatic brain injury, autism, ALS, bipolar disorder, if I'm going to write about those from a scientific perspective, that belongs in something like the Journal of Neuroscience. But if I'm going to write a story about people living with those conditions — and I really think that's the most powerful way to learn about something like Alzheimer's or any of these really feared and misunderstood neurological and brain disorders — it has to be about the human condition, not the neurological condition.

So a novel and story is a different vehicle. And so while I'm learning and you're learning about, say ALS in Every Note Played, it's wrapped in a story about people who live and die with it. And so, part of the way I understand that is in doing the research for these books. I come to know a lot of people who've been diagnosed with these diseases and conditions. So for example, with ALS, I came to know a dozen people who were diagnosed with it and their families and all of the people who come to treat and help them, and was intimately involved with them. Eight of the 12 I came to know died before I finished the final draft. I was with a lot of these folks, right up until the day that happened.

And so I was there to witness what happens to a person when this kind of a crisis hits the family, and how does it affect you and what becomes important, and how do you hold this tragic, horrible thing? Does it take you out or are there ways that it actually... are there ways to continue to love and grow and matter while you're here? I see the tragedy and I witness the losses and the devastation. I also witness the most remarkable love and intimacy and caring. And so, it has to be about the human story.

 
That's really incredible, the level of research you put into that. I am going to ask you more about that later. But in
Every Note Played, your fifth book, the main characters are Richard, a world-class concert pianist, and his ex-wife Karina, whose skill may have surpassed his own but who made different choices about how to express her talent. And as you mentioned, Richard is stricken with ALS, also known as Lou Gehrig's disease. How did all the elements of this plot and these characters come together until everything clicked and you knew this was the perfect framework to present the progression and the physical, emotional, and spiritual effects of ALS?

Thank you. Well, some of it is thoughtful and premeditated, and some of it is a leap of faith and you don't know because writing a 300-page novel is not a sprint, it's a marathon, and I don't outline my books. I start with... and I've done probably six months’ worth of research leading up to writing anything, and I will continue doing research as I write. But at some point, I decide to begin writing and I begin with a very small amount of information. So for with Every Note Played, I decided very early on that I wanted to make Richard a concert pianist with some world success behind him. And the reason behind that was, I always want to raise the stakes as high as possible, whenever possible, while still telling the truth under these imagined circumstances.

And so, with ALS, this is a progressive neurodegenerative disease that causes paralysis, eventually the entire body, all voluntary muscles. And it often begins in the hands, usually in the dominant hand. So it starts as a weakness; maybe there's some muscle cramping and eventually becomes paralyzed. And then it doesn't stay there; the paralysis continues to move up the arm, and then it will start in the other arm. And then it might go to the legs. In some people, it starts in the motor neurons that feed the muscles of the neck and head and you lose the ability to speak first. Those muscles become paralyzed.

So I wanted to choose someone with an occupation and whose identity resided in something that would be compromised by ALS. So like with Alice in Still Alice, she was a thinker for a living and lives in sort of an intellectual, cerebral life. And so while ALS would of course devastate her in many ways, it might not attack her identity. So you can think of Stephen Hawking, who was the famous physicist who actually died of ALS this past March. He lived a very long time with ALS because he had some surgical intervention that allowed him to breathe artificially for 50 years. But he could live in the realm of his mind. And in that genius, he could still contribute to the world and still matter.

But for most people with ALS who aren't geniuses and can’t live in their minds, what could I pick? So I made Richard a concert pianist. And so, he would lose the ability to play this passion, this reason for his existence. I also made him a somewhat famous pianist because everyone I met with ALS, however big and grand and extroverted their lives were, once they have this disease, which can be very fast, the average life expectancy following diagnosis is three years.

So very quickly, your world collapses into the confines of a room and a wheelchair. So how do you, how do you wrestle with that? How do you reconcile a life that used to be so big and global and free, that then becomes physically limited like that? So, I made him a concert pianist. And then, I wanted this book to be about... I was sort of playing with the idea of paralysis and how, you know, whatever I spoke with anyone about ALS, whenever I witnessed it, the thought of being completely paralyzed is absolutely terrifying. To being locked in, and unable to move and communicate and feed myself and toilet myself. We can all imagine and be horrified by that quite easily. And yet, how many of us are emotionally paralyzed in some way? I think that's so much more common. While it should be equally terrifying in lots of ways, it's sort of somewhat normalized.

So we're paralyzed in that we're stuck in the past. Something happened in our past that hurt us or damaged us in some way and we keep living it. It's done and it's behind us. It happened years ago or yesterday, and yet we're still living with that today. We're still living with blame and fear and excuses that keep us limited and locked in, and in a prison of our own excuses as to why I can't quit my job or I can't start a new career or I can't find a man or I can't, I can't travel or I can't have children. There are all these can’ts that confine our lives because of this kind of emotional paralysis and these self-limiting beliefs.

So I wanted to create two characters, one who would have ALS in the physical paralysis and another who would have this kind of emotional paralysis. I gave Richard an ex-wife. The two of them would have some unresolved emotional wounds and history that maybe if they were forced to be in the same room again, they might have the opportunity to reconcile some of that. While ALS can't be cured, maybe her emotional paralysis could be cured and we could set her free. I'm always, in all these books, I'm looking for ways, if the disease I'm writing about is lethal and we have no cure, so if it's Huntington's or Alzheimer's, or ALS, for example, are there ways that the soul can be healed? I've been lucky enough to witness this so many times that it's inspiring to see and to write about.

 
And that inspiration and passion come through absolutely in your writing, it's just so enjoyable to read your books. Is writing a book an emotional experience for you in the sense that you fall in love with your characters and you celebrate their accomplishments and grieve their losses with them?

I definitely grieve the losses. I tend to write my books in public. While I can research from home and edit from home, the actual writing I do better if I get out of my house because I'm home right now and it's comfy here. I might stare out the window for 20 minutes or go take a nap or I might... like I have three kids so I might go clean something or get on the phone or eat something. It’s too much here! It's like, get out of here. I tend to write in public, and so many times, I'll be at a Starbucks, for example, and I'm writing a scene and a lot of times I don't exactly know what's going to happen next too. And so, between being sort of a little taken by surprise or off guard, and the enormity of the emotions and the stakes, I've been known to weep while typing in public, for sure.

In terms of being in love with the characters, it's interesting, I have great empathy for all of them. We learned this in acting too, that even if you're playing the "villain," you are always the hero of your own life. So for all of my characters, even if I'm not writing them in the character's point of view... so, for example, in Every Note Played, we've got Richard and Karina's point of view, there's also a character named Bill who everybody loves. He's one of Richard's caregivers. I know tons about him that didn't necessarily make it on the page to you... or like the siblings in Inside the O’Briens, I know a lot about them. And even if Patrick's being a bit of a jerk, I really get him because I can embody his point of view quite easily because I've done all the research for who he is.

I know them, they feel like family to me, I guess. Some of them I miss more than others. So I miss the family in Inside the O'Briens, I think about them a lot, which is so funny because I made them up. And some of them feel more distant. So like lately, I've been getting a lot of questions about Sarah and Bob Nickerson in Left Neglected. And gosh, I wrote that book, what is it, it's been, I started writing that book 10 years ago. So it takes a little while for me to remember her more intimately. So she's kind of like a friend I've been out of touch with for a while.

 
That's great. You know, when you were talking about you need to get out in public and write, it reminded me of author Jessamyn West who said, “Whenever I'm writing a book, I never get out of bed because if I get out of bed, I always see something that needs dusting.”

So true. But I wouldn't be tempted to dust anything in Starbucks, and in bed I would sleep, so I'm out of here.

 
Your first book,
Still Alice, was inspired by watching your grandmother struggle with Alzheimer's disease. At what point did you decide that you would continue to write novels that were grounded in neurological conditions and what do you find so appealing and rewarding about combining science and fiction writing?

I just originally intended on writing Still Alice to understand what my grandmother went through from her point of view. When she had it, I was a neuroscientist. And my background was in science and I was also a strategy consultant. So I was in the middle, I was in biotech and pharmaceutical world and I was in brain research world. As a neuroscientist, I tried to understand her disease and I did. As much as we can understand the neuroscience of Alzheimer's, I got that. And I read the medical literature on it too. So I understand the doctor's point of view. And I read The 36-Hour Day and a bunch of other books like that. And so I got to understand the caregiver's point of view — and we lived the caregiver's point of view.

But what was missing was, Well, what does it feel like to have this, from her point of view? That to me was the key to get to empathy, so I could feel bad for my grandmother, and I could feel bad for all of us, and I could feel heartbroken and frustrated and embarrassed and confused and upset and all of that. But I didn't know how to feel with her. That was really the inspiration for writing fiction. Like, well, if I could write a story about a woman with Alzheimer's and tell it from her perspective, then that might give me that answer of What does it feel like to have this?

So, I recognized... so I wrote Still Alice to satisfy that. And then, it took me, as you know the story, no one would publish it at first because Alzheimer's is so scary and people don't want to talk about it and it's in the closet, or at least it was. So I self-published it and sold it out of the trunk of my car for almost a year, and then it finally sold to Simon & Schuster. And so, at this point, I could make a living as a writer because a real publishing house was now paying me. And they offered me an advance to write two more books. And so now really was the decision, do I want to be a writer or do I want to go back to science or consulting or something having to do with neuroscience in the more sort of traditional role.

I decided to stick with it and it's absolutely, like I feel like I'm living out my life's purpose and excited every day to do what I do. Why I'm excited about it is, well, I think that, I don't know of any other neuro-novelists out there. Certainly other people could do this. But as far as I know, I'm the only one I know with a neuroscience background. I have a PhD in neuroscience from Harvard who writes fiction.

So I think this is the unique lens that I bring to fiction. So other people have asked, well, are you ever going to write about something else? At one point when my oldest was younger and she was into the Twilight movies, she asked me if I would ever write about werewolves and vampires. I don't think so. I think that a) this is sort of my unique contribution to fiction is this neuroscience lens. I still love it. I'm fascinated with how our brains work to allow us to think and feel and remember and desire.

I continue to be fascinated with the subject. And then using story as a vehicle for empathy and truly understanding what it's like to walk in someone else's shoes, I think there's so much shame and stigma and misunderstanding and fear surrounding the neurological diseases and mental illnesses. Reading The Journal of Neuroscience isn't going to change that. Most of us are afraid of Alzheimer's or bipolar disorder or autism. We don't understand these things, and if we see someone with it, we might, if we're not familiar with it, we human beings hate to be uncomfortable. And if I'm not familiar with something, it makes me uncomfortable really fast. And if I'm uncomfortable, I go into fight or flight, I'm just going to get away from that. I don't want to see it.

So now I'm ignoring all these human beings who are more like me than not like me. So story gives me a chance to help educate the world from a place of empathy, what it feels like to have ALS. So like with ALS, how many of you out there dumped a bucket of ice water over your head, right? Millions of us did this to raise money and awareness for ALS. And so maybe you did this, and so you're familiar with the three letters ALS, and maybe you donated money, which is awesome and helped advance the research toward finding treatments and cures, but do you know anything about ALS beyond those three letters? Do you feel anything about ALS having done the Ice Bucket Challenge? Probably not.

And so, my hope is that in writing the story about someone living with it, you can begin to imagine what that journey is like. And so then the next time you come across someone with ALS or it's in the news, you connect the human beings with it in a better way.

 
Well, that's great, and I love that description, a neuro-novelist, that's great. And you mentioned educating people, which is a wonderful and perhaps overlooked aspect of your work, educating people through your books. What kind of responses have you received from people from your books about heightening their awareness of these conditions and the people who suffer from them?

Thank you. I feel so lucky to be a writer in this day and age where we have social media and ways to interact with readers from all over the world. So the education piece comes from in all different ways. I hear from physicians who recommend the book to their patients and families. Greg O'Brien, who's a friend of mine with early onset Alzheimer's, when I first met him back in 2011, he hands me his neurologist’s doctor report. And I'm like, thinking, Does he think I'm a clinician, I'm going to help evaluate this physician's report? And he opens to a particular page, and it's the prescription, and the neurologist prescribes Aricept and Namenda and a statin and aspirin and “read Still Alice.” So, that's how Greg found out about me was from his doctor.

I know that it's required in some medical schools and nursing schools and occupational therapists who I love, speech pathologists, physical therapists, a lot of these younger people in school and in master’s programs and PhD programs are required to read my books. So I hear from them. And then I hear from the people who are living it. And people who both are in the trenches with it now, so say, if my dad has Alzheimer's or my wife has Alzheimer's and the people who are brave enough to read Still Alice while that's going on, will let me know that like, thank you, this book has really helped me be with my father and understand him better, and while it's scary, it's given me a sense of hope and understanding.

And then for others who read it after the fact, it can offer a sense of peace and healing as well. It's just a way of humanizing what happened because it's so hard to understand it while you're going through it. So the education comes from, you know, I hear back from everyone in so many different ways and it's just incredibly rewarding.

 
I wasn't aware your book was required reading for medical students in so many settings. And it makes sense because they're being taught science but not empathy. So I imagine that that is a vital aspect of their training that they will use going forward for many years.

Yeah, I think it's fantastic. It's an honor whenever I hear that that's going on. Yeah, using my books or people like Atul Gawande or When Breath Becomes Air, any of these sort of personalized accounts, or even my fictional accounts that are so researched, that they do hold the truth within these stories. I think it helps in the training. You're not just treating cells in a dish or an imagined human being there, these are real people with real lives who are affected by the diseases that you're treating.

 
As you referenced earlier, and again just now, that you do painstaking research for all of your books to ensure that you're writing accurately about the condition in question, and more important, how those who are afflicted with the condition deal with the affliction. For example, you mentioned you studied acting for
Still Alice to get to know a character's motivations better. I know you took a yoga class for your book, Inside the O’Briens. You did mention the research that went into Every Note Played. But how did you find the dozen people who had ALS and was it easier to approach them because of your credibility as a published author?

Yeah, it gets easier with every book because I'm a known thing now. When I was starting out, I really relied on my background in neuroscience, which was super helpful as well. When I was writing Still Alice, I remember I called the Chief of Neurology at Brigham and Women's Hospital in Boston and introduced myself by saying, "Hi, Im Dr. Lisa Genova, I have a PhD in neuroscience from Harvard. I'm writing a book about a woman with Alzheimer's and I'm trying to understand how a 50-year-old might come to be diagnosed with this disease. What does that conversation sound like and feel like?" And he said, "Well, why don't you just come to my office and we'll role-play it."

And so I did, I spent two hours with him. Likewise, I shadowed a neurologist at Mass General and sat in a neuro-psych-testing. And everybody said yes. I think if I had said, “Hi, I'm a divorced single mom writing a novel, do you have time for me?” I don't know that I would have been let in all those doors. But now, especially since the Still Alice movie came out, everybody seems to have a sense of who I am, at least in the neurological world. So people say yes.

So with Every Note Played, I spent a lot of time at the ALS clinic at Mass General. ALS TDI [Therapy Development Institute], which is I believe the world's only nonprofit biotech in existence and they focus exclusively on ALS. They're in my backyard too; they're in Cambridge so I spent a lot of time with those folks. And then a man named Ron Hoffman runs Compassionate Care ALS, and he's also in Massachusetts. And he goes to the homes of people with ALS and provides care, whether that's through wise and loving conversation, and being with or knowing that they're going to need the next piece of equipment to get them out of bed or into the shower, or what adaptive tool they’ll need to eat. He knows what they need and can get it to them. You don't need forms and insurance, it's just how their operation works. I used to travel with him to all these people's homes on a regular basis.

So I had the good fortune of, you know, in terms of like my books being educational resources and are they right, I'll go and I'll do the research, I'll write, I'll continue the conversations and the research knowing these families while I write. And then when this book was done, I had the Chief of Neurology at Mass General Hospital in Boston read the draft to see if it was accurate and to take her notes. I had Ron Hoffman of Compassionate Care ALS read the draft and give me notes.

While I'm writing the book, it becomes a collaborative effort in terms of wanting to give the world the best possible and most accurate depiction and portrayal of what it's like to go through this journey.

 
Did they give you good notes about what improvements to make and what things to mention and include?

Yeah. I mean, there are different kinds of... Ron had suggestions that had to do more with the logistics of the equipment and Merit [Ester Cudkowicz] from Mass General had more notes about the specifics of what the doctor's visits are like and the specifics of what is offered, just in case I missed something. But mostly, you know, I'm there with them anyway on a regular basis and I'm a pretty good listener. So, I've mostly, I've got it down.

But I care enough to, you know, I'm not going to just assume I got it right. I want to make sure that whenever I present something factual... so in Every Note Played, there are a couple of times that Richard goes to the doctor's office and there's that conversation between neurologist or nurse practitioner and Richard and I want to make sure that what's being said, especially from the neurologist is what would be said so that people who will read it won’t then be going to the neurologist and think something, like Hey, is this so? and if I've got it wrong, then I've misinformed potentially millions of people. So I don't want to do that.

 
No, no. I understand, I can relate in my own writing. I ask people to read something and say, if you like something that's fine, but I'm more interested in what doesn't work for you, what can be improved. The final product is all that matters.

Yeah. well, in terms of like the literary quality of the work, I have an editor at Simon & Schuster, and so we work together to ensure that.

 
Great. Well, in all of your books, the primary characters are thrust into circumstances that force them to expand their perspective and understanding and endure inner turmoil until they at last come to a place of peace, acceptance, and often forgiveness and redemption. And this character arc is one of hope and optimism even as your characters deal with debilitating challenges. So where does your own hope and optimism come from?

Thank you. I think that, I think a lot of us come the way we come. I am definitely a “glass is totally full” person and believe it's all in how you hold it. And in fact, that saying right there, “it's all in how you hold it,” was articulated to me by a man with early-onset Alzheimer's many, many years ago who refuses to let that take his spirit down and to lessen the quality and the joy and the love in his days.

Like you, I read a lot of self-help and I did do a 200-hour yoga teacher training when I was researching the role of Katie O'Brien, who is a yoga teacher in Inside the O’Briens. So I think I just lean toward optimism and hope and I believe in, I believe in unconditional love. I believe that all human beings are connected. I believe that we're spiritual beings in a physical container. So I have all this sort of spiritual belief and hope that that's how I, that's just kind of how I roll. And so, I think that that lens certainly plays into my books. And it's what I'm able to see. We all see what we pay attention to, right? And so when I'm hanging around people with ALS for a year-and-a-half and there's the tragedy and there's the horror and there's the devastation and the loss, and that is all there, and that is important for me to capture.

I also have my eyes and ears and heart open to the love. Like, where's the love and are there ways that that actually grows while everything else is being diminished? Where is the hope? How do you find hope in a situation that's hopeless? Do people do that? And they do. And it's remarkable. How do people reframe their situation so it doesn't sink them. People care about their legacy, they care about love, they care about forgiveness when faced... you know, we all think we have forever. So if you're not faced with ALS or Alzheimer's or some of these others, we can tend to kind of roll through our days thinking like, I'll do the hard stuff later or I don't have to think about it or I'm going to just, I'll be around forever.

And so we avoid maybe reconciling our relationships or focusing on what matters because we think we have time later. So for people with ALS, I saw them get crystal clear on what matters and pay very close attention to that and nourish that. That's inspiring to see. I was looking for it. When I pay attention to the hope, I can then incorporate that into my stories. I want to give people that. I think that, you know, these journeys are incredibly difficult to go through and it's heartbreaking and it's awful. I really do also hope for the day when we don't have... we have a cure for ALS, we have a cure for Alzheimer's, we have survivors for these diseases.

Until then, I think that the families going through it deserve our love and caring and not our abandonment because what they're going through is a little tough for us to look at. I don't think that people should have to deal with shame or alienation or isolation on top of the burden of these diseases. And so, I want to write a story that offers them some hope and some companionship.

 
As you're talking, I flashed to a scene in
Every Note Played, speaking of love and reconciliation, with Richard and his brothers toward the end. And that was just beautiful the way that they made peace with each other. And that just came through loud and clear.

Oh, good. Thank you. You know, it's so funny, that scene, without giving anything away to the folks that haven't read it yet… so, I wasn't planning to write that scene with the brothers. I was actually... I wasn't home, I was away and I was writing, and toward the end of the chapter before this reconciliation scene with the brothers, something happens that then forces Richard to be in the room with his brothers. I hadn't planned it, it totally shocked me. I wrote the end of that chapter and I went, Oh no, like now I have to figure out what the brothers look like, and I wasn't planning on them really being in this book. So they came in by surprise and by accident. I'm so glad that that happened because that was such I think an important and lovely moment in Richard's journey.

 
And that leads right into my next question, which I didn't expect it to but it does, which is before you begin a book, do you have clarity about the relationships between all the characters or do you get surprised by their choices and reactions as you write?

Oh, yeah, totally surprised. Which is both really fun and terrifying because I don't know what they're going to do. It's like, again, that sort of, you do all this research and have a really good sense of what's possible with any of these diseases, and I've seen all these families and I have a sense of, you know, I also do the research for, you know, so Richard's a concert pianist. I don't know anything about that. So I'm going to piano recitals and piano concerts and took piano lessons, and I'm interviewing world-class pianists. I'm learning about jazz and classical.

So I got to do all this research. But then it's that leap of faith. Well now I'm going to write a story that doesn't belong to anyone and is it all going to work, is it going to make sense? There's a great TED talk by Elizabeth Gilbert, who wrote Eat, Pray, Love, that I just love because it speaks to me, like, whereas it's like this, so many times when I'm writing, it feels like it comes through me and not from me.

So one of my favorite examples was when I was writing Love Anthony. The main character, the mother of Anthony, the boy who had nonverbal autism, she's at one point… the book takes place in Nantucket. She's walking through the neighborhood, this is a very sort of internal scene in this chapter, whatever she's thinking, but she picks up the mail along the way. And then the chapter ends with her at the front door. She looks down at the mail and she's holding a letter from her ex-husband. And when I typed that, I stopped and I went, No, don't have a letter from your ex-husband because I have no idea what it says. And clearly, like I'd have to explain that in the next chapter because if I ended there, I had to put it in for a reason and I don't have a reason, so like, no.

So I delete, delete, delete, delete. I put her back in the neighborhood, she's walking, she picks up the mail, she gets to the front door and mother of God, she's still holding that letter from her ex-husband. And so, I like look up to the sky, I'm like, Who's writing this? So I just allowed it. I said, okay, you've got a letter, I don't know what it says, I don't know why it's there. Let me come back tomorrow and hopefully it will make itself known. So it's a strange collaboration with, I don't know, the universe, the Divine, I have no idea.

 
That's hilarious. Now, your first book,
Still Alice, about a university professor with early onset Alzheimer's won an Oscar for Julianne Moore.

Yeah.

 
How surreal was the experience of watching your characters come to life on the big screen?

Oh, my God, it was insanely surreal and wonderful and so lucky because, you know, not all movies are done well. If this wasn't done well, it could have been a train wreck. I wouldn't have been recommending it to family and friends and the whole world. So I'm so blessed and lucky and grateful and proud of everyone who was involved. This film was made on a shoestring budget. So these actors, these world-class actors, all of them were not paid very much. And everybody brought their best selves to this project. They did the research, they put in 12 hours a day. And so, it was just, it was unreal watching it.

And again, this started with my grandmother who had Alzheimer's. I'm a neuroscientist, I shouldn't ever even be writing a novel, and then I actually do, and no one would publish it. And so, I'm self-published and selling self-published copies out of the trunk of my car for almost a year before I gotta go back and do what I'm supposed to be doing. But then Simon & Schuster buys it. And so, it's like a miracle that any of this even happened at all. So yeah, it was wild. And I got to be on the set. The first day I was there, Wash Westmoreland, one of the two directors, walks me over to the table where it's the Howland family Christmas Eve dinner and our Christmas dinner, and there's Julianne Moore one end of the table and Alec Baldwin at the other. We've got Kristen Stewart and Kate Bosworth and Hunter Parrish.

And so he introduced me and I say, “I made all of you up and here you are, this is so crazy.” And yeah, I got to go to the Oscars and I was there in the audience when Julianne Moore got her trophy and the producers who bought the film rights, James Brown and Lex Lutzus, and I are like just weeping and hugging each other in the audience. Just unreal. Yeah.

 
Something just occurred to me that your daughter was a
Twilight fan and here Kristen Stewart is in your movie. So she must have been really impressed with you.

Well, you would think, but this was now many years later after she made that comment and was into Twilight. So she was like smack in the middle of, I think she was like, what year was it? She was 14 and she was so blase about the whole thing. I brought her on the set and she was like, Yeah, whatever. Really? I don't get cooler than this, honey! When Kristen Stewart was so nice to her and like really wonderful, went out of her way to spend some time with my daughter. And my daughter was just like, you know, very cool.

The other thing, I don't know if you were going to get to this, but another thing that made this whole thing surreal and magical and like just unbelievable is that one of our two directors, Richard Glatzer, who was married to Wash Westmoreland, and they co-wrote the script, Richard was diagnosed with ALS just two months before getting the offer to make the Still Alice film. And then they as a couple had to wrestle with, What are we going to do? because this disease moves really fast. This will likely be the last thing Richard ever does. And so do we want to use that time to make a film, or do we want to travel the world or just stay home with family and friends, or what? And Richard very generously and bravely said, “You know, making movies is my dream, why would I give up my dream?” Like, let's make one more film.

And so, by the time we got to set in March of 2014... so he had Bulbar ALS, which means that like I said earlier, it can begin in the muscles, the motor neurons that feed the muscles of the neck and head. And so, by the time I met Richard in 2013... I've never heard the sound of his voice. He lost the ability to speak. By the time he got on set, he had one arm paralyzed and he was typing with one finger on an iPad. And he co-directed that film for 10 hours a day like that, you know, wearing a bib because, again, because if you don't have the... you can't swallow sort of regularly or consciously... if you're losing the ability to do that, he's drooling. And he showed up and did this film and he was exquisitely effective. Like his directorial notes were spot on and I witnessed it in person, and Julianne Moore and Kristen and Alec talking about it in interviews. Like he really did that.

And it was after they shot the film and it was about to be released in Toronto, I asked him if I could write about ALS next in his honor, and would he teach me a little bit about what it feels like to have it. And so my research for this book began with him.

 
Wow. That is just so astonishing on so many levels. And that really inspired your book,
Every Note Played.

Right. He died just a couple of weeks after Julianne Moore won the Oscar.

 
I'm glad he got to be there for that.

He got to see it. Yeah.

 
Wow. Has there been any interest from Hollywood about any of your subsequent four books?

Yes. So, we've been knocking around with Inside the O’Briens for a while. We're going to be filming this summer. I'm not allowed to tell you who's in it yet, which is so frustrating. I can tell you because it was leaked a number of times and it didn't pan out, we had Russell Crowe a couple of times. It was Russell Crowe and Nicole Kidman for a hot moment, and for a number of reasons that fell apart. And then it has bumped around a lot to a lot of different actors and different directors. I think it's a funny moment and actually a wonderful moment, especially if you're in the industry, if you're an actor or a director. In Hollywood right now, there's so many opportunities with Amazon Prime and Netflix and Hulu and HBO and Showtime and there's just, everybody's so busy, it's hard to get... people are booked out years and years in advance.

So we finally have all the pieces in place and we're going to be good to go on Inside the O'Briens, it's filming this summer. Left Neglected is being shopped out there with a bunch of A-list actresses to play Sarah Nickerson. So hopefully, one of those amazing women will want to do it. And then for Every Note Played, there's some talk about that, but again, I can't tell you who.

 
Okay.

I know, it's so frustrating.

 
Well, with all these media outlets you mentioned, there's an insatiable need for content too, so that works in your favor. That's exciting. What is next? Is the sixth book already underway and you plan on writing novels forever? Or are there other challenges you feel called to conquer even though you're living your dream now?

Oh, that's very nice. Well, in addition to writing, I do spend a lot of time speaking. So I do a lot of advocacy work and I do a lot, I speak. So, this fall, I was on a speaking tour and I was rotating out with James Comey and Gloria Steinem and Joe Biden and Jay Leno speaking at various symphony halls. And my talk was about the power of story as a vehicle for empathy and conversation that fuels social change. I spend a lot of my time speaking.

But in addition to that, my next book is going to be nonfiction, and I'm writing a book about memory. So I've been talking about Alzheimer's and memory and what's normal and what's not in terms of forgetting and how do we remember, why do we forget, and people are confused and concerned and curious about their memories, especially as they get older. And so I wanted to write a nonfiction book that is readable and like interesting to read, not homework and bullet points. Sort of in the... I've been telling people, it's kind of a cross between like a Daniel Pink and an Oliver Sacks or Neil, what's his name, it's on the tip on the tongue right now what's his name?

 
Yes, I know who you're talking about.

Neil DeGrasse Tyson. It's going to be sort of story-style education about how does your memory work. So I'm working on that now and then my next novel will be about someone with bipolar disorder.

 
You mentioned bipolar earlier and I wondered if that was a future subject.

Yeah. I haven't fully started that one yet because I am working on the memory one and I should finish that one before the summer. There's just so much... whenever I suspect that or bump into that there's a lot of fear and shame and secrecy around a disease or an illness or an disorder, I'm like, we need to... let's write about that. Let's bring it out. I think a lot... in mentioning that I might write about bipolar next, when I was on book tour for Every Note Played this spring, it just confirmed that I need to write about that next, because every audience I said that in front of, there was an audible gasp and a nodding. And then in the book-signing lines, people said, please write about that next. So I think the bipolar is affecting millions and no one's talking about it openly. So maybe I can contribute to a conversation that helps.

 
You know, I hadn't realized really until our conversation that your work provides such a valuable service to people who are suffering from these conditions, maybe not themselves but in their family. So, that's really a beautiful thing, that you're living your dream
and making life more understandable and helping people reconcile, and it's a beautiful thing.

Thank you. I think that everyone, I mean, I think as human beings, we all want to be seen and heard and we all want to stay connected, right? We all want to, we all want to be loved. I think a lot of these diseases and conditions cut us off from that birthright. Now, I'm suddenly otherized, I'm different, and so, people don't want to look at you, people don't want to hear from you. You've become something scary to people. So, yes, the reason I write these stories is to get rid of that stigma, get rid of that otherization, to see... My note in Love Anthony, that book about autism… one of the biggest lessons I learned in writing that story, and I say it in the author's note, I say, “The spectrum is long and wide, and we're all on it.” Once you grasp that, then you can begin to see how we're all connected.

So, seeing yourself in the other is really what I'm about in these books. And it's for everyone. It's for the people who... if I have bipolar, I'm probably struggling with, in addition to having that, that nobody gets what I have. And people are judging me or people are excluding me, I get excluded from community, I get otherized. So if a book comes out about that, it helps me see myself in that book and I know I'm not alone. And that helps the people around me who knew nothing about it start to see me and not be afraid of what's going on with me. So I just think it could help pull people back into community through story because story is accessible. Again, people aren't going to read the Journal of Neuroscience and that's okay because only us neuroscience geeks do that.

But novels should be accessible to everyone and movies are certainly even more so. While it's like ridiculously fun to make movies, and it's... my family and friends get all like starstruck and it's, you know, I get to put on pretty dresses if we get to go to the Oscars and Golden Globes and whatnot, the real excitement for me is like, oh, the movie is just such an even more powerful vehicle for reaching people. So, yeah, that potential really excites me.

 
Well, that's wonderful. Lisa, thank you so much for sharing your wisdom and insights with us today. It's always wonderful to connect with you.

Yeah, you too, Phil.

 
I'm so glad that things are going so well for you.

Thank you so much. Thank you for asking such great questions. Always good chatting with you.

 
I hope you don't wait another 10 years for our next one.

I know, right? Well, we stay in touch online but this is fun. Yes.

 
Thank you, Lisa.

All right. Take care, Phil. Thank you so much.


NOTE FROM PHIL: I wish I could have read Lisa Genova’s masterpiece, Still Alice, before my dad passed away following a 10-year struggle with Alzheimer’s. I would have better understood and appreciated what was unfolding in his confused and ravaged mind. I knew that he was “still in there” somewhere, and yet... I might have been able to more compassionately accompany him, as Lisa so brilliantly put it, beyond “the choking weeds and sludge in [his] mind to a place that was pristine and still intact, hanging on.” This book is as important as it is impressive, and will grace the lives of those affected by this dread disease for generations to come. Click here to watch my first video interview with Lisa from 10 years ago.


 
Lisa Genova
graduated valedictorian, summa cum laude from Bates College with a degree in Biopsychology and has a PhD in Neuroscience from Harvard University. Acclaimed as the Oliver Sacks of fiction and the Michael Crichton of brain science, Lisa has captured a special place in contemporary fiction, writing stories that are equally inspired by neuroscience and the human spirit. She is author of five New York Times bestselling novels:
 

 

 
Every Note Played — An accomplished 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 sticking 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 pasts before it's too late.
 

Inside the O’Briens — Joe O’Brien is a forty-four-year-old police officer from the Irish Catholic neighborhood of Charlestown, Massachusetts. A devoted husband, proud father of four children in their twenties, and respected officer, Joe begins experiencing bouts of disorganized thinking, uncharacteristic temper outbursts, and strange, involuntary movements. He initially attributes these episodes to the stress of his job, but as these symptoms worsen, he agrees to see a neurologist and is handed a diagnosis that will change his and his family’s lives forever: Huntington’s Disease.

Huntington’s is a lethal neurodegenerative disease with no treatment and no cure. Each of Joe’s four children has a 50 percent chance of inheriting their father’s disease, and a simple blood test can reveal their genetic fate. While watching her potential future in her father’s escalating symptoms, twenty-one-year-old daughter Katie struggles with the questions this test imposes on her young adult life. Does she want to know? What if she’s gene positive? Can she live with the constant anxiety of not knowing?

As Joe’s symptoms worsen and he’s eventually stripped of his badge and more, Joe struggles to maintain hope and a sense of purpose, while Katie and her siblings must find the courage to either live a life “at risk” or learn their fate.

Praised for writing that “explores the resilience of the human spirit” (The San Francisco Chronicle), Lisa Genova has once again delivered a novel as powerful and unforgettable as the human insights at its core.
 

Love Anthony — "I’m always hearing about how my brain doesn’t work right…But it doesn’t feel broken to me."

Olivia Donatello's dream of a “normal” life shattered when her son, Anthony, was diagnosed with autism at age three. Understanding the world from his perspective felt bewildering, nearly impossible. He didn't speak. He hated to be touched. He almost never made eye contact. And just as Olivia was starting to realize that happiness and autism could coexist, Anthony died.

Now she's alone in a cottage on Nantucket, separated from her husband, desperate to understand the meaning of her son's short life, when a chance encounter with Beth, another woman facing her own loss, brings Anthony alive again for Olivia in a most unexpected way.

Beth Ellis' entire life changed with a simple note: "I’m sleeping with Jimmy." Fourteen years of marriage. Three beautiful daughters. Yet even before her husband's affair, she had never felt so alone. Heartbroken, she finds the pieces of the vivacious, creative person she used to be packed away in a box in her attic. For the first time in years, she uncaps her pen, takes a deep breath, and begins to write. The young but exuberant voice that emerges onto the page is a balm to the turmoil within her, a new beginning, and an astonishing bridge back to herself.
 

Left Neglected — Sarah Nickerson is like any other career-driven supermom in Welmont, the affluent Boston suburb where she leads a hectic but charmed life with her husband Bob, faithful nanny, and three children — Lucy, Charlie, and 9-month-old Linus.

Between recruiting the best and brightest minds as the vice president of human resources at Berkley Consulting; shuttling the kids to soccer, day care, and piano lessons; convincing her son’s teacher that he may not, in fact, have ADD; and making it home in time for dinner, it’s a wonder this over-scheduled, over-achieving Harvard graduate has time to breathe.

A self-confessed balloon about to burst, Sarah miraculously manages every minute of her life like an air traffic controller. Until one fateful day, while driving to work and trying to make a phone call, she looks away from the road for one second too long. In the blink of an eye, all the rapidly moving parts of her jam-packed life come to a screeching halt.

A traumatic brain injury completely erases the left side of her world, and for once, Sarah relinquishes control to those around her, including her formerly absent mother. Without the ability to even floss her own teeth, she struggles to find answers about her past and her uncertain future.

Now, as she wills herself to regain her independence and heal, Sarah must learn that her real destiny — her new, true life — may in fact lie far from the world of conference calls and spreadsheets. And that a happiness and peace greater than all the success in the world is close within reach, if only she slows down long enough to notice.
 

Still Alice — She didn’t want to become someone people avoided and feared. She wanted to live to hold Anna’s baby and know it was her grandchild. She wanted to see Lydia act in something she was proud of. She wanted to see Tom fall in love. She wanted to read every book she could before she could no longer read.

Alice Howland is proud of the life she has worked so hard to build. A Harvard professor, she has a successful husband and three grown children. When Alice begins to grow forgetful at first she just dismisses it, but when she gets lost in her own neighborhood she realizes that something is terribly wrong. Alice finds herself in the rapid downward spiral of Alzheimer’s disease. She is only 50 years old.

While Alice once placed her worth and identity in her celebrated and respected academic life, now she must re-evaluate her relationship with her husband, her expectations of her children and her ideas about herself and her place in the world.

Losing her yesterdays, her short-term memory hanging on by a couple of frayed threads, she is living in the moment, living for each day. But she is still Alice.

Still Alice is as compelling as A Beautiful Mind and as powerful as Ordinary People. You will gain an understanding of those affected by early-onset Alzheimer’s and remain moved and inspired long after you have put it down.

Still Alice was adapted into a film starring Julianne Moore, Alec Baldwin, and Kristen Stewart.. Julianne Moore won the 2015 Best Actress Oscar for her role as Alice Howland.

 
Click here to watch Lisa explain how she started her writing journey.

In 2015, Lisa was named one of the U.S. Top 50 Influencers in Aging by Next Avenue. She has appeared on Dr. Oz, the TODAY show, CNN, PBS Newshour, and NPR.

 
 
Her TED Talk, "What You Can Do To Prevent Alzheimer's," has been viewed over three million times.

She received The Pell Center Prize for Story in the Public Square, for "distinguished storytelling that has enriched the public dialogue"... The Sargent and Eunice Shriver Profiles in Dignity Award... The Global Genes RARE Champions of Hope Award... and The American College of Neuropsychopharmacology Media Award for "informing the public about Treatment and ongoing research in medical illness."

In 2016, she received an Honorary Doctorate of Humane Letters from Bates College...The Alzheimer's Association's Rita Hayworth Award... and The Huntington’s Disease Society of America Community Awareness Award.

An instant international bestseller, Every Note Played is a Library Reads pick, an Indie Next pick, a Bookreporter Bets On pick, and an Amazon Best Book of the Month.

The Catalyst is produced by The Shift Network to feature inspiring stories and provide information to help shift consciousness and take practical action. To receive The Catalyst twice a month, sign up here.

This article appears in: 2019 Catalyst, Issue 2: The Interview Issue