Lisa Genova: Best-selling author and neuroscientist

Best-selling author, Lisa Genova, has just released her second book – Left Neglected. It is a fictional look at the devastating affects of a traumatic brain injury on high-powered supermum, Sarah Nickerson, and is inspired by an actual condition called Left Neglect.

As well as a best-selling author, Lisa Genova is a neuroscientist. She graduated valedictorian from Bates College and went on to complete a PhD in Neuroscience from Harvard University. She is a advocate for various dementia support organisations and writes for the National Alzheimer’s Association in the US.

Her first book, Still Alice, was originally self-published and was eventually picked up by Simon & Schuster. Since it was published in March 2009, it has sold over 40,000 copies in Australia alone and made the New York Times bestseller list.

Click play to listen. Running time: 29.29

Transcript

* Please note these transcripts have been edited for readability

Valerie
Lisa, thanks for joining us today.

Lisa
Oh, thank you.

Valerie
Tell us about your latest book. It’s called Left Neglected. Tell us what it’s about.

Lisa
Left Neglected is about a 37 year old working mother. She has three children and a high powered job. She is, like a lot of working mums today, she is really busy trying to sort of be it all, have it all, do it all. She’s multi-tasking all day. She’s got a to do list a mile long. She’s exhausted.

One morning, on the way to work she is on her cell phone while she’s driving her car and takes her eyes off the road for a second too long, and gets in a car accident and sustains a traumatic brain injury. She ends up with a neurological condition called left neglect. It’s a condition in which your brain is no longer aware of the existence of anything on the left side of anything, including the left side of you.

Valerie
Wow.

Lisa
Yeah, it’s very strange. If you have this, you’re not blind, your eyes still work. And you’re not paralyzed. You can still move your left arm and leg, if only you knew you had them. If you had this, you would only eat food from the right side of your plate and think you’d finished your meal. If you’re a woman, you would put makeup on the right side of your face and think you were looking gorgeous and ready to go out. If you’re a man, you’d shave the right side of you face and have a full beard on the left. You just don’t pay attention to anything on the left.

The story is about her journey of recovery, and learning to sort of reprioritized and pay attention to what really matters, to sort of slow down and live a life that’s a little more paid attention to.

Valerie
And this is an actual condition in real life, isn’t it?

Lisa
Oh yes. Yes.

Valerie
Are they aware that they have left neglect?

Lisa
Usually not at first. What doctors will say is that they are unaware of their unawareness. Patients look perfectly fine. They actually feel fine. They are not aware that anything is missing.

There’s a passage in the book where her husband asks her to, “Well, why can’t you turn your head?” She says, “Everything I see is here. I’m not aware that anything is missing.” It’s like if I told you, “Tell me everything you see in the room.”  Now what if I told you that everything you see is only half of everything that’s really here. Now turn your head and look at the other half, where would you look?

That’s how bizarre it feels to people. They’re not really aware that they are missing anything until they bump into the left side of the door, or they try to read a page from a book and it doesn’t make any sense. They’re sort of, the whole world is constantly jarring them into the reality that they are missing half of it.

Valerie
Wow. Is there a way for them to train themselves to then understand what’s on the left?

Lisa
Yes. That’s the part of the recovery process. People who have this go through a lot of rehabilitation. It’s about training another part of your brain that hasn’t been damaged to first be aware that there is a left side. That honest to God it’s real, it’s there. Go ahead and try to look for it. So, to become aware that there’s a left, and then to go find it. It’s sort of retraining another part of your brain to take over that responsibility.

Valerie
You’re also, apart from being a best selling author, you’re also a neuroscientist. Presumably you got a lot of research for this book through your work, as you’re a scientist. You’ve met and dealt with and researched in real life people with left neglect?

Lisa
Yeah, so I actually never met anyone actually with this condition while I was studying neuroscience as a student, or when I was practicing research. I had read a lot about it, and actually a lot of your listeners might have come across this without being aware of it. There’s a short story about a man with left neglect in the book called The Man Who Mistook His Wife for a Hat by Oliver Sacks. That was my first exposure to it as well. So I kept coming across little stories about people in a hospital setting or in a doctor’s office who had it.

Every time I would be left wondering, “Well, how does someone live with this? How do you walk through a whole world only aware of half of it? What happens when that person leaves the doctor’s office?”

My degree is neuroscience didn’t give me any access to any research on left neglect while I was practicing science, but as a novelist it sort of opened all the doors I needed to walk through to understand it. I came to know nine people who have left neglect very well, and talked to them over and over again while I was writing the book. I went to a couple of rehabilitation hospitals and talked to occupational therapists, physical therapists, and speech therapists, the people who help these people rehabilitate.

Valerie
How common is it?

Lisa
You know, it’s much more common than I had thought. I thought that this was going to be an extremely rare condition because I had never met anyone with it. Unlike Alzheimer’s, which was the topic of my first book, Still Alice- everyone is aware of Alzheimer’s at this point. It’s so prevalent.

I thought I was going to have a hard time finding people with left neglect. It turns out if you call any rehabilitation hospital anywhere and ask them if they’ve heard of this condition they’ll say, “Oh sure, we have people with that here right now.” It’s a condition that can follow with strokes in the right hemisphere, the right side of the brain, a traumatic brain injury, or an aneurysm, hemorrhage. It’s more common than I was originally aware of.

Valerie
Tell us about your first book, Still Alice. For those who aren’t familiar with it yet, what was it about and why did you decide to write it?

Lisa
Still Alice is about a 50 year old women. She’s a Harvard Psychology professor. She starts experiencing moments of forgetting that seem a little unusual for her, but she chalks them up at first to signs of getting a little older, or, “Maybe I’m just too busy and stressed. I’ve traveling a lot. Or, maybe it’s something of menopause.” They keep getting worse and a little more alarming, and eventually she goes to see a doctor. And she’s diagnosed with early onset Alzheimer’s.

The book becomes about her journey from then on. This is a woman who has placed all of her identity and worth in what she does, which is very cerebral. If she can no longer be that, the she is forced to ask herself questions like, “Who am I now?” And, “How do I matter with all that I am while I’m here? And “Am I more than what I can remember?” It’s about her relationship with her family and herself, as she tries her best to live with Alzheimer’s.

Valerie
The jump from neuroscience to writing fiction is quite big. Why did you decide to do it? Have you always been interested in writing, or did this interest? How did that all happen?

Lisa
Yeah, it definitely was not linear. I had no conscious ambition to be a writer.

This all started when my grandmother had Alzheimer’s. My grandmother walked to the bowling alley in the middle of the night, thinking it was the middle of the day. Our family could no longer put off her forgetting to normal aging. She was 85 at the time. We just assumed, like a lot of families, that Nana’s getting old, and she’s starting to get forgetful.

But this walk to the bowling alley in the middle of the night couldn’t be normal forgetting, and in fact it was Alzheimer’s. As the neuroscientist in the family, I really felt it was my responsibility to learn everything I could about this disease and educate my family so that they could better take care of her. I found that everything I read was- it was fascinating for me to learn about it as a neuroscientist, and it was very satisfying to learn all of the information about the current understanding of what causes it. But that didn’t help the granddaughter in me. It helped the neuroscientist, not  the granddaughter.

Everything was written either by a scientist, or a clinician, or a social worker, or a caregiver. They were all views from the outside looking in. I could never get a satisfying answer to the question that I kept coming up with every time I would spend time with my grandmother, which was, “What does it feel like to have this? What is she going through?” And at this point, she was sort of too far along in the progression of the disease to have a conversation with me about it.

I, for some reason, and I still don’t fully understand why I went here, but I said to a colleague at work at the time that I wanted to write a novel some day about a woman with Alzheimer’s and tell it from her perspective, from the very first symptoms, to really get an understanding of what it feels like to have it.

Then a few things happened years later. I ended up quitting my job because my oldest daughter was born. When it was time for me to go back to work my life was in a little bit of upheaval. I was in the middle of a divorce, and so I needed to go back to work. Instead of going back to my old job, I asked myself this question, “If I could do anything I wanted, what would it be?” Instead of going back to my old job, I decided to drop my daughter off at preschool and go to the coffee shop near my house and start writing Still Alice.

Valerie
Wow.

Lisa
Yeah, wow.

Valerie
That’s a big leap of faith.

Lisa
Yeah. It felt a little crazy, actually.

Valerie
Was it difficult? Did other people think you were crazy? Did other people think, “Oh my God, she should get a job.”

Lisa
Oh yeah, my parents were horrified, and completely worried about me. My former colleagues in academia were becoming professors at Harvard and Yale. My other colleagues in business, I had been a strategy consultant for a pharmaceutical companies and bio-techs, they were being paid well and being promoted. And I’m a divorced single mum in a coffee shop writing a novel.

Valerie
Wow.

Lisa
Yeah. It definitely felt a little crazy, but I also loved every minute of it too. It was so satisfying to do that research. I came to know something like 25 people who have early onset Alzheimer’s, and I was in touch with them every day while I was writing the book online. I shadowed neurologists at Mass General Hospital in Boston. It was definitely satisfying that question for me of, “What does it feel like to have this?”

Valerie
So you sat in this coffee shop?

Lisa
Yes, I did.

Valerie
You did your research. You wrote this book. How long did it take? Then tell us what happened when it got to the stage where you’re finished, you want to get it published.

Lisa
It took about a year and a half. I did about four months of research upfront, and then continued it while I was writing. Then I did what you’re supposed to do next, in the United States you are supposed to find a literary agent who will represent your book, who will then go on to find a publishing house that would publish your book.

You typically do the research of literary agents through this book called The Literary Marketplace. I found about 100 agents that I could send query letters to, and I am still waiting to hear back from many of them.

But mostly, it was a long process of waiting. I waited about nine months to hear form any one with a positive response. I got a lot of “Dear author…” no thank you rejection letters. In fact, to this day I’ll open a book at my house and find a little strip of paper that says, “Dear author, Your book is not for us.”

Nine months into the process I heard back from four literary agencies that wanted to read the book. One I have still not heard back from. Two said they thought that Alzheimer’s would be too depressing, that people wouldn’t want to read about it. The last one said, “You know, you’ve got this PhD in neuroscience from Harvard, you should be writing non-fiction. Write a non-fiction book about Alzheimer’s, and then get back to me.”

At this point, I had really exhausted all of my options with literary agents. I had decided that I’d waited long enough, and so I told him, “Thank you very much, but I’ve had enough of this. I’m going to go self-publish it.” To which he said, “Do not do that. You will kill your writing career before it starts.” So I am thankful that I had the stupid confidence to ignore him, because I went ahead and self-published in the summer of 2007. I sold it out of the trunk of my car for ten months before it was bought by Simon and Schuster.

Valerie
OK, how did you support yourself this whole time?

Lisa
A couple of things happened, while I was writing Still Alice I started dating a documentary filmmaker and photographer from Cape Cod. I married him in the spring of 2007. I also, prior to that, in the course of my divorce, we had sold off our investments and things we had bought together, so I had a little nest egg, but I certainly wasn’t saving any money at the time.

Valerie
What got you through? You’re selling the book out of the trunk of your car before Simon and Schuster pick it up. It’s hard work. You’ve just spent all this time writing, and now you’ve got to sell a product. You’ve got to run a business basically. You’ve go to market it. What got you through?

Lisa
I have this conversation with authors who are about to self-publish all the time. I let them know that you have to wear a lot of hats. It’s a lot of work. You have to be your own publicist, your own marketing department, your own distribution. It’s a lot.

Online helps a lot, so the book was available through online retailers. I got involved in social networking, places like Facebook, and GoodReads, and Twitter, so you can go spread the word beyond your neighborhood.

But I knew I wasn’t trying to make a living off my self-published book. I knew that I was just trying to create a loud enough buzz to get enough readers interested and talking about it that I could sort of develop this proof of concept to literary agents or publishing houses to say, “I’ve got an audience, and they’re excited about the book.”

Valerie
So that when it came to your next book it wasn’t going to be as difficult?

Lisa
Oh no, when Simon and Schuster published Still Alice, it debuted at # 5 on the New York Times best seller list. It was on the list for like 33 weeks that year. It’s been translated into over 20 countries. Immediately they wanted me to sign a contract for my next book. It was so funny to me, because here I had this finished novel for the longest time that no one would pay me a dime for, and then with the next book I hadn’t written a word of it yet and it was sold.

Valerie
Yeah, you just had to back yourself in that first situation.

It’s done very well in Australia, and I have no doubt that Left Neglected is going to be just as big.

With the scientific information that you have to cover for people to understand some of the concepts that you talk about in your book and some of the experiences that your characters are going through, how did you get that balance between not being too technical, and still making it digestible for your reader, but giving them enough information so that it’s factual, and accurate, and all of that?

Lisa
Right. I really view these novels as an opportunity to educate people about these conditions that they normally wouldn’t know as much, or anything about. But I’m not trying to write a text book. I don’t want to give people homework. My primary goal is to entertain, and through that story that’s entertaining and moving, I sneak in the education.

I’m not trying to- I did that homework. I read all the literature on Alzheimer’s, and it does feel like homework. When you read the facts, and the statistics, and when you read about the molecular mechanisms of the causes, it’s information that lives in your head. And what I wanted to do was give people the information, but have it live in your heart. It’s a very different experience.

I also used to teach, I have a love of teaching, I used to teach neuroscience to undergraduates. I used to teach neuro anatomy to Harvard medical students. I think I have a knack for understanding my audience. I give a lot of talks. I’ve had the opportunity to be an advocate for Alzheimer’s now, so I give talks at Alzheimer’s conferences all over the place. I can give that sort of talk to a medical community, or I can give it to a room full of people like my family, and I appreciate the difference. And I realize I’m writing a novel, I’m not writing a non-fiction piece. I’m writing a story that primarily has to draw people in and have you care about the characters and interested in how this experience is going to change them.

Valerie
You’ve obviously got two novels under your belt now, but before Still Alice, you come from neuroscience, when you were in that coffee shop and writing, how did you know you were on the right track? How did you know that you were crafting your writing in the right way?

Lisa
Right. I have a neuroscience degree that opened all the doors to all the research I could ever want, I had a grandmother who had Alzheimer’s, so I’ve go this great personal experience, but how the heck do I know how to write anything?

I had never taken a writing class. I took one English class my freshman year in college, just to satisfy my English requirement. I did a couple of things, I read a lot of books on the craft, and I had talked to a lot of people about what they would recommend. I was fortunate enough to get pointed to a few of really good books. One in particular is called Writing Down the Bones, it’s by Natalie Goldberg.

Beyond that, the best thing I did was sort of happy accidents. While I’m being this wildly irresponsible divorced single mum in a coffee shop writing a novel, I figured I might as well keep going. I’d always wanted to learn how to act. You might imagine that the neuroscience kids don’t really dabble a lot with the drama club. I figured, “Here’s my chance, why not?” I actually trained with a group of eleven other actors in Boston for the year and a half that I was writing Still Alice, for nine hours a week.

I found that the acting class was the best writing class I could have ever taken. The things I was learning as an actress applied beautifully to writing. They were things like you’re always telling the truth under imaginary circumstances, and you’re always raising the stakes as high as possible whenever possible. What do people want from each other, and who’s getting it and who’s not? How are your changed by what happens? How do you express honest emotion spontaneously in response to what happens? Just how to analyze a script and the arc of a story, and all of those things that I would learn in acting class, I would then go home and write. I found that all of those principles applied beautifully.

Valerie
How big a part of your life now does neuroscience, or anything to do with that take, or is it you focusing mainly on your writing and acting? What’s the balance?

Lisa
Yes. I mentioned that I remarried, and I moved to Cape Cod, which is about two hours south of Boston. There are no, and I married him and moved before I self published Still Alice, which was quite scary, because there are no neuroscience labs, pharmaceutical company, biotech consulting, anything on the Cape. I was thinking I am really hoping to make a career as a writer, or I am going to end up landscaping or something.

I write, that’s what I do now. I don’t do any neuroscience research. I am really privileged and so grateful that I get to use that passion that I have for the brain, and how it works, and how it reveals our personalities, and our wants, and our moods, and our memories in my writing. I get to bring that to a much greater audience than I did in the past with my neuroscience research, and it being a part of a very small scientific community.

Valerie
Are you already working on your next novel?

Lisa
Oh yes!

Valerie
Can you tell us about it?

Lisa
Yes, yes. My next book is called Love Anthony, and I’m writing it now. It’s about two women who are connected to each other through a boy with autism. The boy with autism, he’s severe on the spectrum. He’s non-verbal and doesn’t like to make eye contact and doesn’t like to be touched.

I think most of what’s written about autism, or what most people are familiar with from the literature has to do with Asburger’s, sort of the more high functioning autism. I, sort of with my other two books, I’m interested in giving a face and a voice to people who aren’t well understood.

Yeah, that’s what I’m working on now.

Valerie
When you’re writing, as opposed to traveling and doing book tours, tell us about your writing routine, like your daily routine. Do you have any morning rituals you have to get through before you can sit down? Or do you let it all come out organically? Do you plot it all out? How does it work?

Lisa
OK. Well, this is a great question. A few things, I actually still write in a coffee shop, in Starbucks.

Valerie
Wow, you still write in the coffee shop?

Lisa
I do, and here’s why- I have three children. I have a ten year old daughter, a three year old son, and an eight month old daughter. If I’m home, I don’t know about other mums out there, but I will either tend to the kids, or play with the kids, or change a diaper, or I’ll end up doing laundry, or seeing what’s in the fridge, or returning a phone call, there’s just so much to pull me out of writing while I’m home.

We have a sitter who watches the two little ones from Monday through Thursday from 9:00 to 2:00. I go to Starbucks, where there aren’t as many distractions. I have a tea, and I write there.

I don’t plot, and it’s so funny you ask that. When I began Left Neglected, there was a lot of terror around writing my second book on the heels of the phenomenon that was Still Alice. It was just sort of, “Oh my God, can I do this again? Will I finish on time? Will it be any good?”

Valerie
The pressure of …

Lisa
The pressure, exactly.

So two things, one having to do with plot and one having to do with sort of that terror, was when I would sit down to write one of the things I would do is pull out a journal and write three pages, hand written, stream of consciousness to sort of just get out all of the angst and the worry.

The writing usually went something like, “I’m absolutely terrified to write the next chapter. I don’t know what I’m doing. What if this isn’t any good?” And then it would end with, “Lisa, relax. You’re not writing the whole novel today. You’re writing probably writing three to four pages, and they can be horrible. That’s OK. Write it anyway. Just keep going.” A little pep talk really.

In terms of plot, I don’t plot my novels. I sort of have an idea for a character and something that will happen to this character, and I sort of let it evolve from there. I was worried that maybe this is wrong, maybe all other writers plot, and I don’t and what’s wrong with me?

Actually, I read a great book called On Writing by Stephen King. He doesn’t plot either. Here’s how he describes it, and it’s exactly how it feels for me. He describes his writing process as if he were driving a car late at night with no moon and no street lights, and he can only see as far in front of him as his headlights will illuminate. But as long as he trusts that he can see that distance in front of him, and he keeps going forward, he’ll get to where he needs to go.

That’s exactly how it feels for me. I really can only see the next chapter in front of me for sure, but beyond that I really don’t know what’s going to happen, and I trust that if I keep going I’ll get there.

Valerie
It’s a bit of an adventure for you as well.

Lisa
Yeah, it’s a lot of fun to discover. Often times the characters will surprise me, and I’ll look like a lunatic laughing out loud or crying in Starbucks.

Valerie
So in Starbucks, you must have to order a lot of tea or lattes to sit there for that long?

Lisa
Yeah. Well, no- it’s funny. I delivered a book and a baby this last year. I was pregnant while I was writing Left Neglected. I laid off the caffeine, so I was drinking water, and it wasn’t nearly as much fun. But yeah, I do. I drink a lot of tea.

Valerie
What would you advice be, Lisa, to the people who are in a completely different career, and they just have this gnawing thing inside them about wanting to write? What would you say to them?

Lisa
Well, I would tell them to absolutely do it. I meet so many writers who are so fearful about writing what they want to write. They want to put it off, or they create all these excuses around it, but they really do want to write their story. I tell them to do it. I usually tell them, “You’re not going to live forever, right? You do know that you’re going to die someday. So write your story.”

I also tell people if they haven’t made any progress and had any success finding a traditional publisher the traditional way, to go ahead and self-publish. Give that a try. There’s a lot less of a negative stigma attached to it than there used to be. The book industry is seeing a little bit more, like the independent film industry and the music industry, where it’s OK to self-publish as a means to getting your work into the world.

Valerie
Great advice. On that note, thank you very much for your time today, Lisa.

Lisa
Oh, thank you. It’s been my pleasure.