The Spectrum’s interview with Lisa Genova

Neuroscientist and novelist discusses disease, the Oscars and aging

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Lisa Genova, a Harvard-educated neuroscientist, has written five novels and spent some time on the New York Times bestseller list. 

Genova sat down with The Spectrum for an exclusive interview on Thursday night, ahead of her Distinguished Speakers Series speech at the Center for the Arts. 

Genova discussed her first novel “Still Alice,” going to the Oscars and cultural perceptions of aging. 

Q: Your novels detail the stories of people who have complex neurological disorders, their stories are frustrating and heartbreaking. They’re written from the perspective of those who are suffering through those disorders. What inspired you to write these stories? 

A: Each one is different. “Still Alice” was inspired by my grandmother who had Alzheimer’s. It was my experience not understanding her as neuroscientist that really drove me to become a novelist. And I wanted to understand it from the perspective of the person who has it. Everything at the time that was written about Alzheimer’s was written from the perspective of an outsider. So, after that it was always different. “Left Neglected” was just out of pure curiosity. I read about left side neglect in Oliver Sacks’ book. A man mistook his wife or a hat many, many years ago, back when I was in college. There was a three-page story about someone with left side neglect. And I never understood it, so I wanted to. So that was that one. “Love Anthony” is about a boy with Nonverbal autism and that was a personal reason. My cousin’s son has Nonverbal autism and I wanted to write that story for her. Huntington’s Disease… so that was my first job out of college; working as a lab tech in a drug-addiction lab at MGH East in Boston. And the lab down the hall from me in February of ‘93, they start celebrating. The neuroscientist in that lab just isolated the genetic mutation that causes Huntington’s. I was 22 and an aspiring neuroscientist and I remember thinking, ‘Oh my God, this is the only thing that causes Huntington’s Disease and they just isolated it, they’re going to cure Huntington’s.’ And [here] we are 25 years later and we still have no treatment and no cure. So I wrote “Inside the O’Briens” about Huntington’s to raise some attention and urgency about that disease. I wrote about ALS –– inspired by one of the directors of our film “Still Alice.” Richard Glatzer was diagnosed with ALS just before he decided to write the script and direct the film. So I asked him if I could write that in his honor. So there is a combination of already touched personally by people I know, curious about the condition or [I] want to be able to help. So my next novel will be about someone with Bipolar disorder. I think that affects a lot more people than we know of. It is kind of in the shadows are people are talking about it as much as we need to.

Q: When are you planning to write that book?

A: I have to finish it. I don’t know, I don’t have a date for that one yet. 

Q: You said in an interview that when you sent out “Still Alice” to publishers, someone wrote you back asking, “You have a Ph. D. in neuroscience, why are you writing fiction at all?” How did that make you feel? Did you ever ask yourself that question before you read that? 

A: This was actually said to me. This was the last literary agent who was going to potentially represent the book and didn’t. It was a little frustrating. But it was [clear] it [wasn’t] going to happen through him in terms of getting published because he didn’t see why someone with my background should be doing this. But it is a strange thing to do. I don’t know any other neuroscientists who are writing novels. But I think I’ve created a bit of a proven concept here. I think that story and narrative is really a way that we human beings communicate and understand and feel and make sense of what’s going on.I didn’t anticipate a whole career in this. I had this idea of understanding Alzheimer’s though story as a way to get there and I wanted to give myself the chance to do that. I did at times think, ‘Who am I to be doing this?’ Just in terms of [not writing] a novel before. But then I would go in bookstores and libraries and look at all of the thousands of books in front of me and they all did it. So why not me? It’s not like it’s brain surgery. 

Q: What were your experiences on set like with “Still Alice” or going to the Oscars? What are your fondest memories? 

A: The whole thing was surreal and exciting and really amazing in the true sense of that word. On the set, of “Still Alice,” it was so trippy and so much fun. The day that I met everyone, I walked in and they were all sitting on the dining room table so there’s Alec Baldwin and Julianne Moore and Kate Bosworth and Hunter Parrish and Kristen Stewart. I walked in and I said, ‘I made all of you up and here you are.’ It was great. I got to know them really well. Kate Bosworth just texted me yesterday. … I got to go to the Oscars, which isn’t like the norm that the author gets to go. I was in Starbucks in Beverly Hills that morning and I could hear the sound of my grandmother’s giggle. And I just started crying in Starbucks. This all started with my grandmother’s Alzheimer’s. I’m like, ‘This is crazy, we’re going to the Oscars.’ So yes. We sort of knew she was going to win. You couldn’t even bet on her in Vegas because her odds were one to 1.001 or something stupid. She won every award that whole year. “Still Alice” was the most-awarded film of the year and it was all because she got “Best Actress” every single time. I was there with the two producers, who bought the film rights and we were crying and hugging and laughing and celebrating when she was up there. She thanked me in her speech so that was nuts. That was very cool.

Q: How did you pick what you got to wear to the Oscars?

A: My publisher recently published a book by a celebrity stylist named George Brescia. The book is “Change Your Clothes, Change Your Life Because You Can’t Go Naked.” He lives in New York City but he also has a house in Cape Cod where I live. So my publisher hooked me up with him and he hooked me up with a designer who let me borrow dresses. It was Rolando Santana and I wore his dresses to the U.S. premiere and the Oscars. And I borrowed jewelry from someone I can't remember but it was at the Peninsula Hotel in Beverly Hills. I had like $100,000 worth of diamonds. 

Q: “The Next Avenue”  named you in the Top 50 influencers in aging. According to Census Bureau, in 2030 the percentage of the population that is 65 and above will outnumber those under the age of 18. What are your thoughts on aging policies? How do you think the media can help to culturally change perceptions about aging? Do you think the U.S. is a youth-obsessed society?

A: Oh, absolutely youth-obsessed. I would imagine a lot of cultures are. It is different. 70 is not what it used to be. In 1900, life expectancy in the U.S. was 47 and now 78. If you make it to 50, you’re likely to live to your 80s and 90s. So we’ve gained decades in longevity. But what do you do with that? So this model that we’ve been living on  worked really well when we lived to mid-40s and 60s. You get educated, you get a job, you have a family, retire and die. That doesn’t really work anymore. The aging population right now is based on a number of things. One is health, how am I going to pay for living as long as I’m going to live and what do I do with that time. How am I still going to matter if I’m not working at the job I used to work at? Do I just go to the mall and watch TV and sit all day? And as a country, can we reimagine what our elders to? We reimagined some of the language. I think that, as a writer, language matters. Someone who is 70 elderly made sense 100 years ago, but now someone who is 70 can be very vibrant and young and elderly has these images of someone  sitting on the couch, not able to do much anymore. I think we need to do more to come up with new language for these older decades and new roles for them - more as mentors, giving back and philanthropy. Health and preventative medicine is going to be very important. If you live to be 100, that sounds fantastic, but not if you’ve got Alzheimer’s starting at age 80. It’s very different than it was 100 years ago.

Q: How do you feel about how journalists report on neurological disease? 

A: I think that journalists as a whole can do a lot better job. I think that, like with pretty much every other subject, they latch on to what could terrify you. I think the journalist approach to subjects like Alzheimer’s or Autism or CTE or ALS tend to either be, ‘How do we scare the pants off you and sensationalize the horror of this?’ or, ‘Let me show you the heroes of this disease.’ One of the examples is with ALS. The media tends to portray the folks –– typically all men shown –– who have gotten to the point where they can’t breathe on their own anymore so ALS progressively paralyzes you. … but only three percent of people with ALS go on 24/7 life support. The rest of them, when they get to the point where they can’t breathe anymore, choose to die. The media doesn't report that. … They don’t show you that it took four hours and two caregivers to get that person dressed in that wheelchair in front of the camera. So, I think the media either tries to scare the public with respect to neurological disease, or it just glosses over the story and sort of gives some sort of Hollywood treatment to it and romanticizes it a bit. One of the things I like to do is pull back that curtain and tell people the truth.

Tanveen Vohra is an assistant features editor and can be reached at features@ubspectrum.com.

Neuroscientist and novelist discusses disease, the Oscars and aging 

Lisa Genova, a Harvard-educated neuroscientist, has written five novels and spent some time on the New York Times bestseller list. 

Genova sat down with The Spectrum for an exclusive interview on Thursday night, ahead of her Distinguished Speakers Series speech at the Center for the Arts. 

Genova discussed her first novel “Still Alice,” going to the Oscars and cultural perceptions of aging. 

Q: Your novels detail the stories of people who have complex neurological disorders, their stories are frustrating and heartbreaking. They’re written from the perspective of those who are suffering through those disorders. What inspired you to write these stories? 

A: Each one is different. “Still Alice” was inspired by my grandmother who had Alzheimer’s. It was my experience not understanding her as neuroscientist that really drove me to become a novelist. And I wanted to understand it from the perspective of the person who has it. Everything at the time that was written about Alzheimer’s was written from the perspective of an outsider. So, after that it was always different. “Left Neglected” was just out of pure curiosity. I read about left side neglect in Oliver Sacks’ book. A man mistook his wife or a hat many, many years ago, back when I was in college. There was a three-page story about someone with left side neglect. And I never understood it, so I wanted to. So that was that one. “Love Anthony” is about a boy with Nonverbal autism and that was a personal reason. My cousin’s son has Nonverbal autism and I wanted to write that story for her. Huntington’s Disease… so that was my first job out of college; working as a lab tech in a drug-addiction lab at MGH East in Boston. And the lab down the hall from me in February of ‘93, they start celebrating. The neuroscientist in that lab just isolated the genetic mutation that causes Huntington’s. I was 22 and an aspiring neuroscientist and I remember thinking, ‘Oh my God, this is the only thing that causes Huntington’s Disease and they just isolated it, they’re going to cure Huntington’s.’ And [here] we are 25 years later and we still have no treatment and no cure. So I wrote “Inside the O’Briens” about Huntington’s to raise some attention and urgency about that disease. I wrote about ALS –– inspired by one of the directors of our film “Still Alice.” Richard Glatzer was diagnosed with ALS just before he decided to write the script and direct the film. So I asked him if I could write that in his honor. So there is a combination of already touched personally by people I know, curious about the condition or [I] want to be able to help. So my next novel will be about someone with Bipolar disorder. I think that affects a lot more people than we know of. It is kind of in the shadows are people are talking about it as much as we need to.

Q: When are you planning to write that book?

A: I have to finish it. I don’t know, I don’t have a date for that one yet. 

Q: You said in an interview that when you sent out “Still Alice” to publishers, someone wrote you back asking, “You have a Ph. D. in neuroscience, why are you writing fiction at all?” How did that make you feel? Did you ever ask yourself that question before you read that? 

A: This was actually said to me. This was the last literary agent who was going to potentially represent the book and didn’t. It was a little frustrating. But it was [clear] it [wasn’t] going to happen through him in terms of getting published because he didn’t see why someone with my background should be doing this. But it is a strange thing to do. I don’t know any other neuroscientists who are writing novels. But I think I’ve created a bit of a proven concept here. I think that story and narrative is really a way that we human beings communicate and understand and feel and make sense of what’s going on.I didn’t anticipate a whole career in this. I had this idea of understanding Alzheimer’s though story as a way to get there and I wanted to give myself the chance to do that. I did at times think, ‘Who am I to be doing this?’ Just in terms of [not writing] a novel before. But then I would go in bookstores and libraries and look at all of the thousands of books in front of me and they all did it. So why not me? It’s not like it’s brain surgery. 

Q: What were your experiences on set like with “Still Alice” or going to the Oscars? What are your fondest memories? 

A: The whole thing was surreal and exciting and really amazing in the true sense of that word. On the set, of “Still Alice,” it was so trippy and so much fun. The day that I met everyone, I walked in and they were all sitting on the dining room table so there’s Alec Baldwin and Julianne Moore and Kate Bosworth and Hunter Parrish and Kristen Stewart. I walked in and I said, ‘I made all of you up and here you are.’ It was great. I got to know them really well. Kate Bosworth just texted me yesterday. … I got to go to the Oscars, which isn’t like the norm that the author gets to go. I was in Starbucks in Beverly Hills that morning and I could hear the sound of my grandmother’s giggle. And I just started crying in Starbucks. This all started with my grandmother’s Alzheimer’s. I’m like, ‘This is crazy, we’re going to the Oscars.’ So yes. We sort of knew she was going to win. You couldn’t even bet on her in Vegas because her odds were one to 1.001 or something stupid. She won every award that whole year. “Still Alice” was the most-awarded film of the year and it was all because she got “Best Actress” every single time. I was there with the two producers, who bought the film rights and we were crying and hugging and laughing and celebrating when she was up there. She thanked me in her speech so that was nuts. That was very cool.

Q: How did you pick what you got to wear to the Oscars?

A: My publisher recently published a book by a celebrity stylist named George Brescia. The book is “Change Your Clothes, Change Your Life Because You Can’t Go Naked.” He lives in New York City but he also has a house in Cape Cod where I live. So my publisher hooked me up with him and he hooked me up with a designer who let me borrow dresses. It was Rolando Santana and I wore his dresses to the U.S. premiere and the Oscars. And I borrowed jewelry from someone I can't remember but it was at the Peninsula Hotel in Beverly Hills. I had like $100,000 worth of diamonds. 

Q: “The Next Avenue”  named you in the Top 50 influencers in aging. According to Census Bureau, in 2030 the percentage of the population that is 65 and above will outnumber those under the age of 18. What are your thoughts on aging policies? How do you think the media can help to culturally change perceptions about aging? Do you think the U.S. is a youth-obsessed society?

A: Oh, absolutely youth-obsessed. I would imagine a lot of cultures are. It is different. 70 is not what it used to be. In 1900, life expectancy in the U.S. was 47 and now 78. If you make it to 50, you’re likely to live to your 80s and 90s. So we’ve gained decades in longevity. But what do you do with that? So this model that we’ve been living on  worked really well when we lived to mid-40s and 60s. You get educated, you get a job, you have a family, retire and die. That doesn’t really work anymore. The aging population right now is based on a number of things. One is health, how am I going to pay for living as long as I’m going to live and what do I do with that time. How am I still going to matter if I’m not working at the job I used to work at? Do I just go to the mall and watch TV and sit all day? And as a country, can we reimagine what our elders to? We reimagined some of the language. I think that, as a writer, language matters. Someone who is 70 elderly made sense 100 years ago, but now someone who is 70 can be very vibrant and young and elderly has these images of someone  sitting on the couch, not able to do much anymore. I think we need to do more to come up with new language for these older decades and new roles for them - more as mentors, giving back and philanthropy. Health and preventative medicine is going to be very important. If you live to be 100, that sounds fantastic, but not if you’ve got Alzheimer’s starting at age 80. It’s very different than it was 100 years ago.

Q: How do you feel about how journalists report on neurological disease? 

A: I think that journalists as a whole can do a lot better job. I think that, like with pretty much every other subject, they latch on to what could terrify you. I think the journalist approach to subjects like Alzheimer’s or Autism or CTE or ALS tend to either be, ‘How do we scare the pants off you and sensationalize the horror of this?’ or, ‘Let me show you the heroes of this disease.’ One of the examples is with ALS. The media tends to portray the folks –– typically all men shown –– who have gotten to the point where they can’t breathe on their own anymore so ALS progressively paralyzes you. … but only three percent of people with ALS go on 24/7 life support. The rest of them, when they get to the point where they can’t breathe anymore, choose to die. The media doesn't report that. … They don’t show you that it took four hours and two caregivers to get that person dressed in that wheelchair in front of the camera. So, I think the media either tries to scare the public with respect to neurological disease, or it just glosses over the story and sort of gives some sort of Hollywood treatment to it and romanticizes it a bit. One of the things I like to do is pull back that curtain and tell people the truth.

Tanveen Vohra is an assistant features editor and can be reached at features@ubspectrum.com.

TANVEEN VOHRA


Tanveen Vohra is The Spectrum's co-senior news editor and covers international relations and graduate student protests.