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Hello. I'm Jane Hutcheon. Welcome to the program where my guest is the American author Lisa Genova. Lisa was a Harvard -trained neuroscientist whose novel 'Still Alice', about Alzheimer's disease, was turned into an Academy Award-winning film starring Julieanne Moore.Her novels deal with debilitating diseases and disorders, challenging us on many levels. I can see the words hanging in front of me and I can't reach them and I don't know who I am. Her latest book, 'Inside the O'Briens', is about Huntington's disease, a genetic disorder for which there is so far no cure. This Program Is Captioned Live by CSI Australia Lisa Genova, welcome to 'One Plus One'. Great to have you on the program. Thank you for having me.Tell us about the place that you grew up in and that you write about, I guess we have visitors from the US all the time but they're all from very different locations. What's Boston like? What's Cape Cod like? Oh, OK, so I grew up just outside of Boston, very familiar with the city and I now live on Cape Cod which is beachy and very calm and serene. 'Inside the O'Briens', my newest book, takes place in a neighbourhood of Boston called Charlestown and it's made up of primarily the Townies and the Toonies. The Townies are the blue-collar Irish Catholic generations of Irish Catholic who live there and the Toonies are the is sort of yuppies, the young professionals who've come in and started jentedrifying the place a little bit.Were you part of the townie group? Where did you grew up? I grew up in Waltham, a suburb of Boston. Also very blue Cory at the time, a lot of Italian and Irish immigrants so I'm a combination of - I'm three-quarter Italian, a quarter Irish. Were you good at school? Yes, always. Academically nailed it all the way through. I was valedictor ian of my high school class, very interested in math and science and was a jock, I played soccer and ran track and lacrosse. When it came time to think about your career, how did you choose science? I just always leaned that way. It sort of was a given. I loved - I took two years of biology, two years of chemistry, physics in high school. I really love it. And got to college and suspected that I would be a biologist and wasn't really leaning toward medical school, more the scientific discovery - how do we work - and started taking courses in psychology and read 'The Man Who Mistook His Wife for a Hat' by Oliver Sacks and it was the perfect marriage of biology and psychology, sort of what is the biology of our psychology? How does this organ called the brain allow us - how does the biology and physiology of that allow us to think, remember, desire? Our personalities, our ability to speak and walk, all of that happens in the brain. How does that work? Oliver Sacks, who died fairly recently, had this great way of explain ing clinical things in the most human way. Was that where you connected with his writing as well? Yeah, and I've always loved that about the research I've done along the way so in college I studied memory loss following stroke and I was studying the anatomy of that and the neurochemistry of that and pharmacology of how we could maybe prevent the cell death and I was reading about people who had right hemisphere strokes and left hemisphere strokes and then in graduate school I studied the molecular neurbiology of drug addiction and tried to understand the human side of these disease s and disorders. Your work was about discovering how different chemicals affected the brain or could potentially affect the brain? The idea is the concept called neuroplasticity that lot of folks have probably heard of and that is that your brain is not one thing that reacts the same to had changing environment. We have the ability to make new neural pathway s and really adapt to what's going in our environment. So with addiction, if you have, whether it's caffeine or nicotine or heroin or cocaine, the first time your brain sees this it's not addicted but if you have repeated exposure over and over again you might become an addict? What changed, right? The compound is still the same, it's still alcohol or nicotine or caffeine or heroin, the thing that changed was your brain. What I was looking at in graduate school at Harvard are what are the changes that had to happen and changes that happen in the brain as a result of changing the proteins that are made and that are transcribed from the DNA.Your grandmother Angie was diagnosed with Alzheimer's in I think 1998. When you heard that, how did that affect your family? It was alarming to our family. It really - it was upsetting. It shook things up in a lot of ways. My grandmother had been really independent and intellectually facile and wise and lots of fun and she lived alone, my grandfather had died when I was 7 and she was diagnosed when I was 28, so now we needed to look after her. My grandmother is very well loved, she has nine children, most of us live nearby, and so she had a lot of people willing to help her and yet everyone's idea of what needs to be done with Alzheimer's - it's not like, "You have diabetes, here's what you do - it's, "You have Alzheimer's, good luck." So families have to sort of reinvent the wheel and figure out how to care for someone and this can last for - when you're diagnosed with Alzheimer's the neurologist will tell you this can take 2 to 20 years so how do you plan emotionally, financially for 2 to 20 years? My grandmother's nine kids are in a room who all love her and want what's best for her and yet we're all going through stages of grief so some are in denial this is really happening and others are bargaining or angry or in despair over this and some are in acceptance and they're all on this different emotional place and they're all trying to do what's best for their mum but there is lot of disagreement as to what should happen at first. Ultimately, my Aunt Mary ended up being her primary care giver and moved in with her it was really hard. It was really baffling to her behaviours. She was forgetting who we were, not understanding who she was, losing access to the ways and memories that connected us. It was really heart breaking. So how did you go about dealing with her diagnosis? Well, as the scientist I dealt with it by trying to understand it, by learning about it. So Alzheimer's wasn't my area of expertise but I certainly felt a comfort level in doing that reading so I read the scientific literature, I read some text book stuff on Alzheimer's and then I read a lot of the self-help books, the non-fiction books on Alzheimer's, and I gained an appreciation for the current understanding of the science of the disease and an understanding for how to care-give and yet what was missing was what does this feel like from the point of view of my grandmother? Everything I read was written by the perspective of an outsider so a scientist or clinician, care giver, social worker and this question of what does it feel like turned out to be the great kritical thing and I still believe this, that in the absence of a cure, the thing we really mourn the loss of most is the ability to connect with our loved ones with Alzheimer's. You know, we rely so much on language, right, I mean that's obvious, if I want to connect with you we're going to talk and if I know you really well, one pof the things we also rely on is our shared memories, our shared interests. If that is unavailable to us, how do I still connect with you, how do you still know I love you? How do you show me you love me? It can absolutely be done. I did not know how to do it when my grandmother had Alzheimer's. That was the seed for 'Still Alice'. How do we connect? What does it feel like? With that question in your mind, you set about writing the book. How many years after the diagnosis did you write it? It was about 5, 7 years? She was diagnosed in '98 and she died in 2002, I began writing the book in 2004.So she died quite quickly after the diagnosis? Yeah, she was 85. She likely had Alzheimer's perhaps up to a decade prior to the diagnosis and we had noticed all kinds of forgetting and escalating forgetting and just assumed this was a normal part of normal aging, there's this misconception that's out there and we're appy to be in denial and look the other way because we don't want this to happen to her, no-one wants someone that you love to be diagnosed with Alzheimer's so we let the beginning of this disease just scoot on by without notice.Suppose a lot of people do that? Very common, yeah.So you wrote a novel Oz posed to a non-fiction book - as opposed to a non-fiction book. Why did you pick a professor who was not an aged person, who was in middle age, around 50? So I choose chose a younger person with Alzheimer's because the people that I'd come to know who were sharing with me what it feels like to live with Alzheimer's were in their 40s, 50s and 60s. So millions of people have Alzheimer's and we tend to think of this disease as including the elderly only and we also tend to think of it as the elderly who are at the end stage of this disease so we think of this as a disease of the dying elderly and that excludes the millions of people who are younger and living with Alzheimer's. We don't typically give them a face and a voice. What's going on? Oh, boy.Are you going to break up? No. I have Alzheimer's disease. In talking about this younger crowd, my grandmother, we missed the beginning of her Alzheimer's. She probably missed it too. We can talk ourselves into, oh, that's just what happens and I'm not going to dwell on it. When you're in your 80s you're probably retired, not as accountable and responsible for as many things. If you're 50, and there are lot of 50-year-olds with Alzheimer's and we haven't been talking about this because there's so much pain and stigma attached to the disease - you will notice this. It will be ex - you will be exquisitely sensitive to when you're at your job and you can't make sense of the day, you can't remember which meeting is next or what you're supposed to say in the meeting. I hope to convince you that by observing these baby steps into... I made her a professor because here's a disease that robs you of language memory and cognition and what if you've placed all your value and worth in what you do and so many of us do that. When you meet someone it's like, "What do you do?" It sort of identifies who you are. What if you've placed all your worth and identity in being an intellectual? You're a professor at Harvard, everything you do is about language, memory and cognition, then this disease cause you to ask questions like who am I? How do I matter for I'm not those thing s? Do I have value as a human being if I can't remember a conversation 5 minutes after it happens? They're very, very confronting subjects. You must have realised this as you penned your novel. Is that why you couldn't immediately get a commercial publisher for the story? Yes, the book wasn't intended to be confrontational. It was written to tell the truth under these imagined circumstances. It was a lot of empathy behind it. I mean, the research I did to write this book was gained from a place of intense listening and open-hearted listening and in honour of my grandmother so this book wasn't intended to be confrontational and yet the response from all the literary agents who didn't want anything to do with the book had mostly to do with the fear around Alzheimer's that people might not want to read this because it's too scary to even think about Alzheimer's and so that was fortunately the misconception and so I ended up having to self-publish this book originally and sell it out of the boot of my car for almost a year. We have to tell this story, so you learned about where to get it published, you self-published it and then you literally stood at street corn snrz I always carried a box of books around and, yes, I would give them away to people in book clubs and say, "If your book club reads this and enjoys it, would you please post a review somewhere online, either a blog or Amazon or somewhere," and independent book sellers would take a copy or two and various people might buy a copy or two. I sold about 1,000 copies in 10 months so it wasn't, you know, feeding my kids. You must have felt really committed to this piece of work that you'd done in order to go out - because that involves potential humiliation, that could have been quite difficult. Yeah, you know, I wanted the book to have a chance at least and I did have the fear of you know that show - do you guys have 'American Idol' or something similar? Yes. The beginning of the season with the contestants who are auditioning and they're the ones who really believe they can sing and they are tone deaf. It's horrible. I had a little of that fear so maybe I think my book is good and it's just awful and I should go back to science but I suspected the book was well written and good and I had a enough people I trusted who would have told me I was kidding myself so I thought I'd give myself a year and see if it would happen and if it didn't take off I was willing to go back to doing something I was traineded and educated to do. My goal has always been to make a contribution and I didn't know it would be through literature. This was not a planned career. And when eventually an agent looked at it and I think it sold to a publisher for about half a million US dollars, what went through your mind? Did you just go, "I knew it!" No, and there was never this sense of, "I'll show them." It wasn't indignant and there was no - it just was sort of - I was surprised when it didn't happen with the literary agents initially. I was like, "I thought this would be the way the book would get published." I knew I didn't want to make a career as a self-published author. That was not the path I wanted to stay on. I knew to reach a global audience I needed a legit publisher and I was thrilled when it happened, just elated. Like, OK, great, I've done it. Here we go, now readers will get the book. Did you suspect at the time, too, that you might have had a film in there? No. Again y think all - even before I self-published it there's that sort of giddy fantasy of, well, who would you cast? And I think all writers do this and certainly my family who had been reading the book were happy to play that game, like who would be Alice and who would be John but it wasn't based in reality at all and even after it was originally published - and I understand this now, it's a miracle that movies get made and any authors that I would meet out on book tours like this would say - we'd talk about film options a little bit and they'd say just what a ridiculous long shot it is and even if it's optioned it is very likely never to get made so don't get your hopes up so ah! It happened. So live in the moment y tell myself. It's really all I can do. Live in the moment. I'd like to talk a bit about your life and your writing and you've written that your writing career in a sense was instigated by two events - one was divorce and one was your daughter starting preschool, as well as your grandmother's Alzheimer's diagnosis. How easy was it to, I guess, reinvent yourself in amidst this, I suppose, challenging part of your life into a writer? Um, so here's what happened - so my grandmother was diagnosed in 1998, I was a strategy consultant for a biotech pharmaceutical and medical device company at the time. In 2000, my daughter was born and I kit my job intending to be out for about a year. - quit my job. The job was intense hours and travel and I just really wanted to start her out on the planet in a sane way and in the course of that year my marriage really started to unravel which was surprising to me and heartbreaking to me and I was trying to fix the marriage and didn't go back to work. I was sort of paralysed in this state of "this isn't working and I don't know what to do" and a level of shame because I knew my marriage was failing and I had never failed at anything and that's how I looked at it and framed it at first. And when my daughter was 3 I was separated and then just before she turned 4 I got divorced so now I'm a divorced unemployed single mum and should have gone back to any number of jobs I could have gotten at the time. I was living right near Boston so there's biotech, there's pharmaceutical, there's neuroscience a labs, there's consulting, there's plenty I could do and yet what I was most struck with was the fear of not my life would look like because I could always predict what I would do and then the tone of the question changed and instead of the fear that fall offed the question of I don't know what my life is going to look like t was a cure yosdy - if I could do anything I wanted and didn't have to care about what anybody thought of me, what would I do? The answer was writing write the book. The book was the idea I had in 19 nalth when my grandmother was recently diagnosed and I would like to write a navel about a woman are-W Alzheimer's and tell it from had perspective. Everything I read was non-fiction and I couldn't get this answer and this answer was really about empathy and fiction is the place where we can walk in someone else's shoes but I'd never written anything before so I figured this would be a hob hy when I was refired some day. Suddenly I'm 33, newly divorced and unemployed and instead of doing the reasonable, responsible thing of going back to work where I would actually be paid and everybody around me would be OK with that because everybody was sort of scratching their head and worried I'd gone crazy when I decided instead not to and I dropped my daughter off at preschool and began writing a novel instead. What an amazing story. Thank you.In writing that novel, you've now written four novels, you've published four novels, the latest one about Huntington's disease - the issues that you raise in this book are fascinating because it doesn't just involve the person Joe who discovers he has Huntington's disease; it is about his children, grandchildren, who has the gene? A lot of people are facing this now with the huge documents in genetic science. Is it something, I suppose, we relate to more than the initial disease? So the story has to be multigenerational because Huntington's is 100% genetic so if mum or dad has this, every kid has a 50-50 shot of getting and because of the advancements in science, because we've discovered the genetic mutation that causes Huntington's, everyone at risk can get a blood test to find out if you're going to get it so there's this genetic crystal ball we have for things like Huntington's, breast cancer, cystic fibrosis. We can find these things out and we haven't, as a world, faced this before so it's an incredibly complex question of, you know, you're 22 years old and your dad has Huntington's, do you want to find out if you're going to get this in your future? You can get an answer to that. It's incredibly complicated, the ramifications to that, the relationship you have with your siblings who may or may not be gene-positive. The relationship you have with your parents, your father who has the disease you're going teat good in the future if you're gene-positive. It is a really tough thing to be saddled with. You're all going to die of something and it's likely that whatever we get is partially inherited through the cocktail of genes we got from mum and dad, whether it's cancer or heart disease or Alzheimer's, something is going to take us out at some point and we don't sit in a seat when we're 20 years old and get told approximately how and when you're going to die. Everyone with Huntington's is faced with this question. Can you tell us a bit about what Huntington's does to somebody because you say in the book it's a particularly cruel disease? It's been called the cruelest disease known to man. It is a neurodegenerative disease that begins - the symptoms typically begin in your 30s and 40s, typically after you've already had kids, so you've either passed it on or not already. It begins typically, the hallmark symptoms have to do with movement so you have loft involuntary movement, moving that you cannot control and didn't decide and it can be quite violent in fact so it used to be called Huntington's chorea which is Greek for 'dance' and so I also have a loss of control in voluntary movement y can't even do what I intend to do. Muss take on a life of their own. If you have this you will have lot of twitching and grimacing in your face, my arm might fling up, I might move around a lot in the seat. Your tongue is a muscle so you slur your words, eventually you're tripping as you walk and falling down, you can't feed yourself, you won't be able to walk anymore, won't be able to speak anymore, you will be totally dependent on others to take care of you. You also have psychiatric and behavioural cognitive components so you'll have paraparanoia, obsessive compulsive disorder, disinhibition of rage which is awful for families to live with, so many calls to the police. It's really tough to manage this disease and it kills you in 10 to 20 years.That's awful. And the solutions for how do you live with this don't come from the hospital or the pharmacy, they really come from you've got to find something within you to live with this so that you're not dying from it every day. The families I came to know who have Huntington's have extraordinarily had heroic ways of approaching their lives which have been shortened and are difficult and become about how do I love the people I love intensely now? How do I make my life matter now? It's really about getting super present right now.Is that really the message, the end point of all the things you write about, that life is about what is here present in front of you? Some of it. I think all of my books also are about love, like ultimately the why we're here thing always boils down to unconditional love, like how can we get to that? I think that so few of us love someone unconditionally. It's a really - we love with limitations and a lot of the people I've met going through these various journeys, whether it be with autism or Alzheimer's, Huntington's, brain injury, motor neurone disease, these crises really - some people are able to become truly heroic and figure out how to love unconditionally and it's inspiring, yeah.Lisa, before I let you go, I heard that you studied acting to help your writing and also you studied yoga to get the idea of one of the characters in the book, Katie, because she was also a yoga instructor. Do you have to really walk in someone's shoes to that extent? Do you have to be expert in what people do in order to write about them? No, you don't have to do that but as much as possible I really believe in the research which puts you in front of folks who have these disease those I've met other writers who have written about Huntington's or Alzheimer's, for example, and I've met writer whose have written about Huntington's and have never met a person with Huntington's disease and that shows in their writing f you ask me, and does a dis service to the possibility and the responsibility of educating your readers because this is not a Google search, this is - if you can get in front of people and learn from them, is an opportunity to breathe 3-dimensional life into your stories. That's really where you can write from a place of empathy. And the acting, I mean that's surely because you're hoping to get a part in your next movie. Exactly. Exactly. The acting actually, I didn't appreciate that acting was going to teach me how to write, that acting would teach me how to get emotionally honest because as grown-ups we're socialised to not be emotionally honest. How does it do that? So, as an actor - if you watch Julieanne Moore in 'Still Alice', she's not pre tending to be grief-stricken, she's not pre tending to be in a rage, she's not pretending to love, she's able to call up these emotions spontaneously in the moment in response to what happens and we don't do that because our parents told us not to. They're like, "Sh! Don't scream. Be quiet. Don't cry here." Especially boys, "Don't cry," and as you become a teenager, like, "Don't lust after the first attractive boy that walks by. Keep it neat and tidy." In acting class you learn to get disinhibited, to get rid of that voice in your head that sounds like one of your parents that says, "Don't do that. What will people think?" And allows you to just be authentic and not plan it and I would do those exercises in acting class and then come home and write and I found my writing could be emotionally honest. Lisa Genova, thank you so much for joining us on 'One Plus One'. It's been a great pleasure. So much fun. Thank you.

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