Thank you to Lisa Genova, Empathy Warrior, Author and Neuroscientist, for joining me on my podcast!
Lisa’s mission: “My purpose in my writing is to humanize and to engender empathy and compassion for people who have neurological issues.“
Ask yourself like Lisa does: “what would I do if I didn’t have to care about money or what anyone thought?“
Enjoy our interview on your favorite PODCAST platform or the transcript below:
Lisa Niver:
This is Lisa Niver from We Said Go Travel. And I am so honored and delighted and excited to have the most incredible author, neuroscientist, Mom, yogi here with me today, Lisa Genova. Thank you for being here.
Lisa Genova:
Lisa, thank you so much. I love your energy and your generosity. It’s so fun to know you.
Lisa Niver:
Thank you. First of all, you have a PhD from Harvard in neuroscience. People know you write about neuroscience and you bring these incredible realistic characters into our lives. So, one of the questions I personally have for you, and I’ve loved your books forever, is what came first? Were you always a writer and then you were a neuroscientist? How did this evolve that you’re at the top of excellence in both of these amazing hard challenging fields?
Lisa Genova:
Oh, my goodness, thank you. I had zero desire or inkling to write most of my life. I was a geeky, nerdy scientist always and very laser focused on that and driven since I was 18. I decided I wanted to be a neuroscientist when I was young, when I was 18, right away in college, and studied that. It was called biopsychology back then. It’s now a neuroscience major as an undergraduate, but that didn’t exist yet because I’m that old. I got a job as a lab tech in a neuroscience lab at Mass General Hospital in Boston right out of college working on the molecular basis of drug addiction.
I went on to get my PhD and I studied that at Harvard and I was a fellow at the NIH. And then I still had no idea I was going to be a writer, but my grandmother was diagnosed with Alzheimer’s and right about that time that I got my degree. And as the neuroscientist in my very big Italian family, I was not her caregiver. She had nine children, so we had lots of people to help with caring for her. But I could learn about Alzheimer’s and pass that education on to my family to help us be better caregivers. And everything I read, it was helpful. I read the neuroscience and that was interesting to me, not helpful to my family, but I read about the disease management and how to be a caregiver.
I knew the worlds of Alzheimer’s and yet what was missing from it was the perspective of the person who has it. At the time everything was written by a scientist, a clinician, a caregiver or social worker and not from the perspective of someone who has the disease. And what I recognized in myself was I felt a lot of sympathy for my grandmother, and a lot of sympathy for us who loved her and we were losing her right in front of us. So, I felt bad for her and bad for us and sympathy is a disconnect–she’s otherized. So, I felt bad for her, but I didn’t feel empathy. I didn’t know how to feel with her. I was very uncomfortable around my grandmother’s Alzheimer’s.
I loved her so much and it was really heartbreaking to watch her lose access to her entire life’s history and not know who we were. And I remember thinking, well, fiction is a place where you get to walk in someone else’s shoes, and feel empathy for someone else’s experience and at the time that kind of story didn’t exist about Alzheimer’s. And I thought, maybe someday I’ll write it. And I don’t know how to write. That will be when I’m retired some day and the very fast pace of my professional life has slowed down. My first child was born in 2000 and I quit my job. I didn’t intend to quit right away, I thought I’ll take six months to a year off.
And then my marriage started to unravel, and I didn’t go back to work, and I was trying to fix my marriage. I had been with my first husband since I was in college, and I was 33 at the time when we got divorced. It was upsetting for me to get divorced. My life had been on a very linear, check all the boxes, I’m doing all the things “right” and now I have this sort of upheaval on what I had framed as a failure. And I was heartbroken and upset and really afraid of an uncertain future. But the fear, luckily, turned into a curiosity and I started asking myself good questions, — what’s my future going to look like? What if I could do anything I wanted?
At first, I thought I’ll just go back to work. But then I thought, what if I could do anything I wanted? and I didn’t have to care about what anyone thought of me? And the answer, the thing that just kept bubbling up was you want to write the book.
Lisa Niver:
Wow.
Lisa Genova:
I tried like hell to talk myself out of it, because I don’t know how to write, I’m a neuroscientist, I don’t write fiction. This is not a safe, stable choice for you right now, girl, you are a divorced, unemployed single Mom. But it was the answer every time I asked myself what would I do if I didn’t have to care about money or what anyone thought? And it was I want to write this book. So, against all sort of reason and sort of you know the logical thing, because it was wildly illogical, I dropped my daughter off at preschool and began doing the research for the book that would become Still Alice.
Lisa Niver:
Oh, my goodness, I’m so glad you shared that with us. Because your books have helped, inspired and educated so many families about so many terrifying, confusing diseases. But I think that for all the people like me who get divorced and feel like complete failures and think what am I going to do now? And what a brilliant question to ask, what would I do if I didn’t care what anyone else thought?
Lisa Genova:
I felt so much shame and fear and that question was really liberating. I still ask myself that on a regular basis, am I living the life I really want to live? And if not, why? Sometimes there’s practical reasons that you can’t, but are there baby steps? My whole life changed because of that. I didn’t have any writing background, and I became a student again. I read lots of books on craft.
And I didn’t know any other writers, which turned out to be helpful, because I didn’t know what I didn’t know, and I didn’t know how hard it is, and I didn’t know how bleak that it can be and how difficult is to get published. And you know a bit about how hard that can be.
I didn’t know and so I was sort of blissfully unaware. And I would go into bookstores and libraries and look at all of the thousands of books and think all of those people wrote books, why can’t I? Why not me? It helped, getting out of my own way that was the hardest part of writing the book. It was giving myself permission to do it.
Lisa Niver:
Oh, my gosh that is exactly the way all people start in something new. But how incredible that your “I think I might give myself permission to do this” turned into a New York Times best seller and a movie where the actress won the 2015 Oscar.
Lisa Genova:
Yeah, it’s bananas. And Lisa, it didn’t start that way either though, because I wrote the book and then no one would publish it.
Lisa Niver:
Oh.
Lisa Genova:
There was no one to represent it. I sent out query letters to a hundred literary agents and I heard back no in a form letter, Dear author, no thank you, from most. I got three responses saying we’ll read the manuscript. One, I never heard back from and the other two thought that Alzheimer’s was just too scary and too depressing of a topic for fiction readers. They thought people would shy away from it and that it just wasn’t marketable, so I had really hit a dead end. It was stick the book in the drawer and go back to neuroscience, the bench or consulting or biotech. Or, and this was the summer of 2007, I self-published it. And I sold it out of the trunk of my car.
This is before Facebook, social media was MySpace and Shelfari. It was very limited, but I used that. I was giving myself one year, because I thought if I’m like those contestants for American Idol who are auditioning and can’t sing, but think they can sing, I’ve got to get my life going. I have to earn a living, if this doesn’t work I have to get going here. I was giving myself a year and in 10 months — word of mouth lead to a literary agent who took me on and she sold the book to Simon & Schuster. It ended up being this book that’s been translated into 37 languages and Julianne Moore has an Oscar. So, it’s such a fun story to tell. Your mouth is hanging open. I went from selling out of the trunk of my car, I was begging people to read it.
Lisa Niver:
Oh, my goodness. I think it’s so important that people hear that– obviously at this point where you have potential movie deals for three more books. There’s an Oscar from one of the movies. Your TED talk has been watched by eight million people. But it’s hard sometimes to remember that everybody starts at the beginning, and that a hundred agents really ignored you and I mean, gosh, would it be fun to write them all now. But don’t do that — that’s bitter, you’re not bitter.
Lisa Genova:
No, no, no. But it’s like that scene from Pretty Woman when Julia Roberts goes back to the store where the woman wouldn’t wait on her and she’s says–you work on commission, right?
I still hear that to this day, Lisa. There are people who will come up to me and say everyone tells me that your book is beautiful and it’s helped them, but I just can’t go near it yet. It’s too close and I can’t do it. It’s just too upsetting right now. And I understand that. There is that element of this book, this topic, this subject– it’s heavy, it’s hard for folks depending on where you are in the journey. If Alzheimer’s is in your life it can be hard to read this book. It takes courage.
Lisa Niver:
I agree with you, it can be hard. I know for myself we have a family member that had ALS and isn’t with us anymore, but Every Note Played was such a beautiful journey. Your characters when I was reading it, I feel like I know them, your character development is so brilliant and compelling.
Who first called you an empathy warrior? I love that.
Lisa Genova:
Oh, my gosh, I can’t remember where that started.
Lisa Niver:
I love that.
Lisa Genova:
I think it was in Australia on a book tour there. Someone introduced me for a talk and they come up with their own little spin on your bio. And I thought I love that. After Still Alice — when I was given permission to continue, because now I could feed my family, make a living doing this. I get to combine these two things that I care about now, right? I’m passionate about the brain, and brain health and how does the brain work to allow us to think and feel and remember and everything else.
And what about all of these people who live with neurological diseases and disorders and mental illness who because of something going wrong or working differently in their brains that they become otherized and stigmatized and people don’t know what’s going on with them? And that lack of familiarity, that lack of language to be able to talk about what that is, makes people feel afraid, right?
Lisa Niver:
I see.
Lisa Genova:
If you’ve got something going on with your brain and I don’t know what that is, I feel afraid of you and so that further, you know, stigmatizes and alienates folks. And feeling lonely and alienated on top of what’s difficult is such an unnecessary price to pay. My mission, my purpose in my writing is to humanize and to engender empathy and compassion for people who have neurological issues.
Lisa Niver:
Yes, you’re such a gifted storyteller. I remember reading Left Neglected, which was the book about traumatic brain injury, if anyone hasn’t read that one yet. I have intermittent left esotropia that was undiagnosed for a very long time, so I don’t have full left neglect, but I had a lot of missing pieces. And for me it was so interesting to read about someone else and see how they experience it.
How do you come up with these ideas and are the people drawn from your giant Italian family or where are you getting all this inspiration?
Lisa Genova:
Thank you. And before I answer you, you really just hit on something that is also magical, a magical sort of byproduct of all of this and now I’m very mindful of it– is that the books not only help educate with respect to the experience and compassion and empathy for people who have no knowledge of TBI or ALS or Alzheimer’s. As in, I don’t have that in my family and I might never read a book about, I’m certainly not going to read a nonfiction book about ALS, if that doesn’t affect my life, but I might read a novel and now I get that education.
But for people who do live it, the books, because I really do homework and I’m trying to tell the truth under these imagined circumstances, I can portray with dignity and respect, that they have a chance to feel seen and heard, right?
That on these pages, like you just said with respect to your experience, — that’s how I feel, that’s what happens to me. And there’s so much healing that can happen in that — to know that you’re not alone and to feel that you can point to this and say this is me, so I love being able to do that. How do I pick my topics– it depends.
Left Neglected, the book about the traumatic brain injury, came out of a curiosity. I didn’t know anyone with it prior to doing the research for that book. Oliver Sacks wrote a book called The Man Who Mistook His Wife for a Hat. He’s a neurologist. And these are true stories and they’re sort of like short stories of clinical vignettes of folks with really interesting brain stuff.
He wrote the book Awakenings, which became a movie with Robert De Niro and Robin Williams. There was a three-page story about a guy with left neglect, and I thought what happens to him? He’s in a hospital in the story and I wondered does he go home? How do you live…how do you walk through a whole world if you’re only aware of half of it? What is this like to experience that?
The book on autism, Love Anthony, was inspired by my cousin, she’s like a sister to me, her son has very severe autism. So, instead of the Temple Grandin’s and a lot of people out there who have the high-functioning Asperger’s end of autism. I thought– what is the other end like– where folks are nonverbal and don’t like to be touched, and can’t make eye contact? What is that experience like and how is that felt?
ALS came out of Still Alice. Richard Glatzer was the co-writer of the script and the co-director of the Still Alice movie which was directed and written by Wash Westmoreland and Richard Glatzer. Richard was diagnosed with ALS just a couple of months before he read the book, and agreed to be involved in the film and so he was on-set filming 12 hours a day. His ALS began in the motor neurons of his neck and head, so he couldn’t speak and he was drooling. And one of his arms, maybe his right, was completely paralyzed and he’s typing with one finger on an iPad. He’s a heroic man and a beautiful soul, good guy.
By the end of the filming, I asked him if I could write about ALS next and would he be the first to explain to me what it feels like? And he said yes and we corresponded through email right up until just before the Oscars. My last email from him he typed with his right big toe. It’s a combination of personal and someone I know or I am really curious.
Lisa Niver:
It’s amazing, amazing what you’ve done. And I know there is a new book on the horizon. Are you allowed to tell us what are you diving into next to help people have their personal experience revealed or have more empathy about?
Lisa Genova:
I’m writing, I’m about 200 pages into my next novel. It’s about a young woman with bipolar disorder. I chose bipolar because I had this notion, and I think I’m spot on, that this is something hiding in plain sight everywhere.
That this is a neurological issue, mental illness issue where there’s a lot of shame and a lot of stigma and so people are keeping it secret and not talking about it.
I’m really hopeful to tell a story that becomes a vehicle for conversation to normalize and humanize and talk about a subject so that our communities can be more empathetic and compassionate And we can collapse the distance between people who don’t have bipolar and people who do.
I hope that will help people who are going through it. It’s a really tough disorder to live with and it requires a lot of support from community to do well with it. Many people do great with it, but in the beginning when you’re trying to figure it out and you’re feeling alone in it, and like you have to hide it– it’s an unnecessary burden to deal with. I’m excited to put this one out there.
Lisa Niver:
Well, I can’t wait for that. But while people are waiting for that, in case anyone hasn’t read your nonfiction book, Remember, I think that Remember shares so much about how important it is to pay attention. And I love that you talk about forgetting is not evil.
Lisa Genova:
Thank you. That book came out of talking about Still Alice and Alzheimer’s for so many years that I found that most people, especially over the age of 40, have this really unhealthy relationship with their own memory. That, in these moments of forgetting that we all experience every day, just as a normal part of being human, people go into a tailspin and a panic. And there’s fear and anxiety and stress over, oh, my God, I must be losing my mind or my memory is terrible, or I might be getting Alzheimer’s. This is the first sign. And I recognize that people have this expectation that memory is supposed to be perfect.
Lisa Niver:
Right.
Lisa Genova:
And it’s just not. Our human brains aren’t designed to remember everything. And there are things that we’ll always fail at if we only rely on our brains, so things like a to-do list are perfectly okay. Or why you walk into a room and you don’t know why you’re in there and that’s normal. And here’s why that happens.
I wanted to give people a sort of owner’s manual. This is how memory works. This is what it needs. This is what it doesn’t need. This is why it forgets. Here’s how you can improve it and optimize it and keep it healthy. And here’s what you can let go of day-to-day and not worry about if you can’t — it’s not designed to remember to do things later, remember people’s names.
It doesn’t catalogue everything we encounter it only remembers what you pay attention to. So, just real super quick folks, if you are regularly forgetting where you put your glasses, your keys, your phone, where you parked your car. Oh, my God, what does that mean? Am I getting Alzheimer’s? I’m betting you didn’t pay attention to where you put them. Because if you don’t give it a moment’s attention, that’s a neurological input, you cannot create a memory of anything past this present moment unless you give it your attention. So, if we didn’t make a memory of it in the first place, you didn’t forget anything.
Lisa Niver:
I think it’s brilliant that you called it an owner’s manual. Because I do think you give so many quality explanations and tips about encoding memories and feelings and journals. But I also think it’s important that people have clear information about how we can help our brains with our choices every day.
What do we eat? Do we exercise? And like you said you’re a yogi, do we meditate? But can you talk for a minute? I think it’s really important that people hear from you about, that we think stress is the biggest issue, but that the lack of sleep is really, really a problem.
Lisa Genova:
I don’t know which one impacts you more– whether it’s reactivity to stress and can you be less reactive to stress, because we’re not going to be able to remove the stressful world from doing what it’s doing — it’s how we react to it. But sleep is big and it stresses people out, unfortunately, to hear this because a lot of people are not good at sleeping.
But the data’s super clear, it’s just really compelling, that human brains and human bodies need seven to nine hours of sleep. Because sleep is not a state of unconscious nothingness. We are very biologically busy while we sleep and we’re repairing and we’re restoring or consolidating memories. We’re cleaning metabolic debris that accumulated during the business of being awake.
A lot of important things are going on and if you don’t get the right phases and the right amount of sleep then you’re disrupting those processes. They’re interrupted and not completing and over time that can create some health issues and can create some memory problems.
So, knowing that, then people think– oh, my God I don’t sleep enough, I’m in trouble. Everything up until today is water under the bridge.
What can you do tonight to support a good night’s sleep? I did not get a good night’s sleep last night, but I’m not panicked. It’s just — new day, new night — what can I do?
This is a whole other episode, Lisa, but people can Google. Start with your room temperature — is it too hot? You want to be able to fall asleep. Write down your to-do list for tomorrow if thoughts are cranking and you can’t shut your brain off.
Are you exercising during the day? Because that helps you fall asleep at night. Get off your screens before bedtime. Your pineal gland thinks it’s daytime if you’re staring at this screen right up until the moment you want to fall asleep, because that light is telling your brain that it’s daytime. If we can get back in the rhythm of the planet, that would help us fall asleep.
There are things we can do that will help the people who are saying– I just can’t fall asleep and that’s the way it is. We need to get empowered. We have agency and influence here. Ask yourself what can you do to help support a better night’s sleep tonight and see if that works. It’s worth it.
Lisa Niver:
I agree with you. It could be its whole own episode and I would love to have the chance to talk to you again. I just wanted to talk briefly about the choices you make that can make a difference. And it’s important that if you ate more vegetables, and you turned your screens off earlier and you got a good night’s sleep, you might feel a whole lot better.
Lisa Genova:
Yes.
Lisa Niver:
And remember those simple steps.
Lisa Genova:
We live in a funny culture. Everybody wants the magic pill so they can destroy their brain and body and then just take the magic pill to fix it. We all want to live a long life, but we want to match our brain span to our lifespan, right?
We don’t want to live to be 80, but have Alzheimer’s at 80, so that is going to require some good living choices along the way. Because we know that the health of your brain and body has a combination of the genes you’ve inherited and how you live. We can’t do anything about the genes you inherited, but we can do a lot about the way you live.
So, if you can incorporate a healthy lifestyle on a day-to-day basis, it doesn’t feel like deprivation, it doesn’t feel hard. Once you get in the habits of yummy healthy food and daily exercise it feels good, you feel better, and then you’re setting yourself up for a healthy brain for a lifetime.
Lisa Niver:
That’s the perfect segue towards the end of our conversation about choices. Because the thing you started with, about how you came into being a writer was– what choices do I want to make with my life, what’s really going to fulfill me and make me happy? You said it much more eloquently. What was your question that you asked yourself about what you should do with your life?
Lisa Genova:
I love what you’re saying. Can we be intentional? It’s, if I could do anything I wanted what would I do? To this day for me still, it’s I want to write the next book, and that’s what I’m doing.
Lisa Niver:
That is so exciting and we can’t wait for the next book to come out. And several of your books are going to be movies soon. Can you talk about that or we’re not talking about that yet?
Lisa Genova:
From your lips to God’s ears.
We have three in development. And I am so glad I write books and I don’t make movies because it’s a lot of puzzle pieces and you’re not in control of a lot of them.
Every Note Played, Inside the O’Briens, and Left Neglected are all in development. And any one of them could pop soon, so hopefully we’re filming at least one before the end of this year.
Lisa Niver:
Oh, my goodness, it’s so exciting. Lisa, your books, I love them, it’s been my honor to write about them. I really appreciate all of your support in my writing career and I wish you so much incredible success with all of it. And thank you from all your readers, that don’t get this opportunity to speak to you directly but will be listening, that we love your books.
Lisa Genova:
Oh, Lisa, thank you so much. I am cheering you on as well and thank you for being such a support. It’s fun that we got connected.
Lisa Niver:
Thank you, thank you, thank you. And if people want to find you, what’s the best way to look for you on the Internet or social media? Where can they get updates about books?
Lisa Genova:
I’m on Instagram and Facebook, that’s really me — @authorLisaGenova, and my website is lisagenova.com.
https://www.instagram.com/authorlisagenova/
https://www.facebook.com/authorlisagenova/
Lisa Niver:
Perfect. And everybody who wants to learn more, don’t forget to watch her TED talk, which already has eight million views. Thank you so much and I can’t wait to buy your next book.
Lisa Genova:
Thank you, Lisa.
My interviews and articles about Lisa Genova:
https://msmagazine.com/2018/12/24/virtual-search-irl-empathy/
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Thrive Global https://community.thriveglobal.com/surviving-covid-like-a-superhero/
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