Lisa Genova's Blog, page 3
September 4, 2013
People with Alzheimer's still matter
My contribution to Maria Shriver's Conversation on Alzheimer's this week on NBC news.
Famous faces of Alzheimer's : 'People with Alzheimer's still matter'
NBC News collected stories of people caring for their loved ones battling Alzheimer's. Share your own stories on Twitter, Facebook or Google+ using the hashtag #AgeofAlz.
NBC News
Lisa Genova: What does it feel like to have Alzheimer's?
How has Alzheimer’s Disease had the greatest impact on your life?
My grandmother was diagnosed with Alzheimer’s when she was 85. Everything I read about Alzheimer’s was scientific, clinical, all viewed from the outside looking in, and the information lacked an answer to the one question I desperately wanted to understand. “What does it feel like to have Alzheimer’s?” I rearranged my life to answer that question. I’m a neuroscientist who became a novelist, an advocate and a speaker, sharing what I’ve learned, helping others better understand what it feels like to live with Alzheimer’s.
What is the one thing about the disease you think people should know that they may not be aware of?
You are more that what you can remember.
If I have Alzheimer’s, and we have a conversation, I might forget the verbal content of that conversation in five minutes. But that doesn’t mean I won’t continue to feel the emotional connection. It doesn’t mean the conversation wasn’t important or that it didn’t affect us. I might forget you and what you said, but that doesn’t mean that our shared experience wasn’t meaningful. We are more than what we remember.
People are terrified of Alzheimer's. People come up to me all the time and tell me, "I'm too afraid to read your book." "I don't want to think about it." I understand. Alzheimer's is scary. It's easier to look away, to not talk about it, to pretend it doesn't exist. But it's awfully hard to cure something that doesn't exist. Fighting Alzheimer's is going to take courage.
There is so much fear, shame, stigma, alienation, and isolation surrounding Alzheimer's. It reminds me a lot of how people viewed cancer 40-50 years ago. People didn't even say the word "cancer." Instead they called it "the big C" in hushed voices. But something changed. People began talking openly about cancer. They began wearing looped ribbons and walking to raise awareness and money, and communities began rallying around their neighbors with cancer, offering dinners and carpools and support. And now we have treatments for cancer. We have cancer survivors.
Right now, we have no Alzheimer's survivors. We need to drag Alzheimer's out of the closet and show everyone how big and urgent this problem is. We need to be brave enough to talk about Alzheimer's. And we need to change the image of this disease, which tends to show only an eldery person in end stage, someone dying from Alzheimer's. This leaves out the millions of people LIVING with Alzheimer's, people newly diagnosed in their 40's, 50's, 60's, 70's. What about those faces and voices? They don't typically get included in what gets talked about when we talk about Alzheimer's. It's time we hear and see them. Alzheimer's is not a statistic, a faceless number, or a hopeless image of someone whose life has already been lived. Alzheimer's is my grandmother, your father, her sister, his best friend. They deserve our attention, our compassion, and a cure. People with Alzheimer’s still matter.
Lisa Genova is the New York Times bestselling author of "Still Alice."
Leeza Gibbons: The heart never forgets
NBC News
Leeza Gibbons and her mother
This disease won't wait for you to be ready. You can't delay the emotional, physical and financial burden while you get prepared. It breaks in, takes a hostage and then steals from the family and loved ones while they try to negotiate a way out, but there is NO way out - it's only by going right through it that you can ever learn to cope and survive. The sooner you can name and claim your new reality, the better things will be. I lost the two most important women in my life, my mom and grandmom to Alzheimer's, but I learned that a heart never forgets and even as they were forgetting, they were not forgotten . It is possible to hold on to yourself and show up for your own life, even while letting go of someone you love who is disappearing from theirs.
Leeza Gibbons is Founder of Leeza's Place and host of the daily syndicated news magazine America Now.
Famous faces of Alzheimer's : 'People with Alzheimer's still matter'
NBC News collected stories of people caring for their loved ones battling Alzheimer's. Share your own stories on Twitter, Facebook or Google+ using the hashtag #AgeofAlz.
NBC News
Lisa Genova: What does it feel like to have Alzheimer's?
How has Alzheimer’s Disease had the greatest impact on your life?
My grandmother was diagnosed with Alzheimer’s when she was 85. Everything I read about Alzheimer’s was scientific, clinical, all viewed from the outside looking in, and the information lacked an answer to the one question I desperately wanted to understand. “What does it feel like to have Alzheimer’s?” I rearranged my life to answer that question. I’m a neuroscientist who became a novelist, an advocate and a speaker, sharing what I’ve learned, helping others better understand what it feels like to live with Alzheimer’s.
What is the one thing about the disease you think people should know that they may not be aware of?
You are more that what you can remember.
If I have Alzheimer’s, and we have a conversation, I might forget the verbal content of that conversation in five minutes. But that doesn’t mean I won’t continue to feel the emotional connection. It doesn’t mean the conversation wasn’t important or that it didn’t affect us. I might forget you and what you said, but that doesn’t mean that our shared experience wasn’t meaningful. We are more than what we remember.
People are terrified of Alzheimer's. People come up to me all the time and tell me, "I'm too afraid to read your book." "I don't want to think about it." I understand. Alzheimer's is scary. It's easier to look away, to not talk about it, to pretend it doesn't exist. But it's awfully hard to cure something that doesn't exist. Fighting Alzheimer's is going to take courage.
There is so much fear, shame, stigma, alienation, and isolation surrounding Alzheimer's. It reminds me a lot of how people viewed cancer 40-50 years ago. People didn't even say the word "cancer." Instead they called it "the big C" in hushed voices. But something changed. People began talking openly about cancer. They began wearing looped ribbons and walking to raise awareness and money, and communities began rallying around their neighbors with cancer, offering dinners and carpools and support. And now we have treatments for cancer. We have cancer survivors.
Right now, we have no Alzheimer's survivors. We need to drag Alzheimer's out of the closet and show everyone how big and urgent this problem is. We need to be brave enough to talk about Alzheimer's. And we need to change the image of this disease, which tends to show only an eldery person in end stage, someone dying from Alzheimer's. This leaves out the millions of people LIVING with Alzheimer's, people newly diagnosed in their 40's, 50's, 60's, 70's. What about those faces and voices? They don't typically get included in what gets talked about when we talk about Alzheimer's. It's time we hear and see them. Alzheimer's is not a statistic, a faceless number, or a hopeless image of someone whose life has already been lived. Alzheimer's is my grandmother, your father, her sister, his best friend. They deserve our attention, our compassion, and a cure. People with Alzheimer’s still matter.
Lisa Genova is the New York Times bestselling author of "Still Alice."
Leeza Gibbons: The heart never forgets
NBC News
Leeza Gibbons and her mother
This disease won't wait for you to be ready. You can't delay the emotional, physical and financial burden while you get prepared. It breaks in, takes a hostage and then steals from the family and loved ones while they try to negotiate a way out, but there is NO way out - it's only by going right through it that you can ever learn to cope and survive. The sooner you can name and claim your new reality, the better things will be. I lost the two most important women in my life, my mom and grandmom to Alzheimer's, but I learned that a heart never forgets and even as they were forgetting, they were not forgotten . It is possible to hold on to yourself and show up for your own life, even while letting go of someone you love who is disappearing from theirs.
Leeza Gibbons is Founder of Leeza's Place and host of the daily syndicated news magazine America Now.
April 16, 2013
Misconceptions
Love Anthony is now in paperback, which means, among other things, that it has a new cover design. I love the new cover. I think it’s eye-catching and aesthetically pleasing, and the image is even highly relevant to the story. Books covers are so important. It’s the first thing a potential reader sees and can be the singular, pivotal reason why someone picks that book up and decides to see what’s inside or alternatively decides to walk away and choose something else. The entire content of book can be deemed desirable or undesirable based on a quick glance at the cover. So many unspoken assumptions are made about the story on the inside based on the cover on the outside.
This has me thinking about autism. I’ve been speaking about autism at book events since September, and there are a lot of false assumptions circulating out there, especially among people not directly affected by autism—so many misconceptions based on a quick glance at someone’s “outside cover” with little or no experience with the “inside story.” Many of these misconceptions have been told and retold for so long, they’ve reached an almost urban myth status.
· Nonverbal people with autism don’t understand language.
· People with autism are cognitively impaired, or less nicely put, mentally retarded.
· People with autism don’t feel love.
Most people I talk with who aren’t directly affected by autism often admit to me that the sum total of what they know about it was gleaned from Dustin Hoffman’s performance in Rain Man.
So let’s “open the book” and debunk these myths.
Myth #1: Nonverbal people with autism don’t understand language.
It’s possible that for some nonverbal autistic people, language is not intelligible. But what if it is? Can you know for sure? I think it’s safer and far more humane to assume that all nonverbal people with autism have inner voices. They understand what you’re saying. And they are listening.
I’d like to share a couple of examples here of nonverbal autistic people, heroes really, who have battled and broken through the silence to reveal their inner voices.
Carly Fleishman: “I want people to understand that autistic people are people and we all have an inner voice.”
http://carlysvoice.com/home/
Elizabeth Bonker: “On the dark side is the traditional belief that we have no language. Free your minds from disbelief.”
http://www.youtube.com/watch?feature=...
Myth #2: People with autism are cognitively impaired.
Some people with autism do have some additional cognitive challenges, but IQ tests that rely on expression of language or pointing, outputs that can be unavailable or severely impaired in some autistic people, aren’t going to be sensitive enough to reveal to the intelligence that might lie within.
Autism does not equal unintelligent. Autism does not equal unable to learn. In fact, some of the smartest people living on the planet today have Asperger’s--Temple Grandin and Daniel Tammet, to name two. It’s been speculated by many that if Albert Einstein, Thomas Jefferson, and Wolfgang Mozart were alive today, they’d be diagnosed on the spectrum. A pretty smart crowd, if you ask me.
Myth #3: Autistic people don’t feel love.
I recently did a book event with Andrew Solomon, author of Far from the Tree, on World Autism Day in Toronto, and he admitted to having this misapprehension prior to doing the research for his book.
It’s easy to see where this preconception comes from, especially if viewed from a distance, “from the cover” so to speak. If a child can’t say “I love you,” if he doesn’t like to be hugged, if he can’t make eye contact and exchange all the magic that can happen in a shared gaze, if love can’t be reciprocated in the ways we traditionally show and feel it, is love there?
It is. Without question.
All of the parents I know and spoke with about autism love their autistic kids and feel loved in return. And I’ve witnessed it—in a knowing smile, in an exuberant hand flapping, in an unspoken energy, in how hard these kids work to please their parents.
Myth #4: People with autism are poor social communicators.
Wait, you’re thinking, this one can’t be a myth. This is the actual clinical description of autism. According to DSM IV, autism is characterized by difficulties in social interaction, verbal and nonverbal communication, and repetitive, restrictive behaviors. Even people with autism who can speak have trouble communicating, especially with comprehension of double meaning, facial expression, and body language. This deficit in social communication is a DEFINING symptom of autism.
So if it’s a defining symptom, how can it be a myth?
In March, I attended the Tucson Festival of Books to promote Love Anthony. In addition to the two panels I was on with other fiction writers, I was scheduled to be on a speaking panel with John Elder Robison. John has written three books—Look Me in the Eye, Be Different, and Raising Cubby. John has Asperger’s.
About ten minutes before our scheduled time to begin, the room was already filled to capacity (300) with people standing in the hall, willing to stay and only listen. John arrived, and I introduced myself. He said hello, gave me a courtesy, fleeting moment of eye contact, and then he paced.
We were supposed to sit side-by-side at a table before set microphones and cards bearing our names and next to a moderator, but John wasn’t going to be able to sit still. He needed to stand and move. The organizers adjusted, and I decided to join him and stand, too. Meanwhile, John continued moving, touching everything on the table as he passed it.
I do a lot of speaking, and I like to think I’m pretty good at it. One of the challenges in speaking in front of an audience of 300 is to make everyone feel included, like they’re part of an intimate conversation. It involves not just getting up and talking but talking TO PEOPLE, engaging them in what you have to say, sharing an experience together. In short, it involves social communication.
And here is John, pacing around with Asperger’s.
So I thought to myself, “Okay, Lisa. You’re probably going to have carry this hour. He’s not going to be able to do this.”
I couldn’t have been more wrong. He was AWESOME! He was smart, funny, dynamic, and incredibly entertaining. HE was the one who could’ve carried the whole hour (and pretty much did). After our presentation, the line of people waiting to connect with him personally and have books signed far exceeded the line of people in front of me.
So there you go. John has autism, AND he’s an exceptional communicator. Myth busted.
The great lesson in all of this has been told to me over and over by parents of children with autism. “If you’ve met one child with autism, you’ve met one child with autism.” Or, put another way—please don’t judge a book by its cover.
This has me thinking about autism. I’ve been speaking about autism at book events since September, and there are a lot of false assumptions circulating out there, especially among people not directly affected by autism—so many misconceptions based on a quick glance at someone’s “outside cover” with little or no experience with the “inside story.” Many of these misconceptions have been told and retold for so long, they’ve reached an almost urban myth status.
· Nonverbal people with autism don’t understand language.
· People with autism are cognitively impaired, or less nicely put, mentally retarded.
· People with autism don’t feel love.
Most people I talk with who aren’t directly affected by autism often admit to me that the sum total of what they know about it was gleaned from Dustin Hoffman’s performance in Rain Man.
So let’s “open the book” and debunk these myths.
Myth #1: Nonverbal people with autism don’t understand language.
It’s possible that for some nonverbal autistic people, language is not intelligible. But what if it is? Can you know for sure? I think it’s safer and far more humane to assume that all nonverbal people with autism have inner voices. They understand what you’re saying. And they are listening.
I’d like to share a couple of examples here of nonverbal autistic people, heroes really, who have battled and broken through the silence to reveal their inner voices.
Carly Fleishman: “I want people to understand that autistic people are people and we all have an inner voice.”
http://carlysvoice.com/home/
Elizabeth Bonker: “On the dark side is the traditional belief that we have no language. Free your minds from disbelief.”
http://www.youtube.com/watch?feature=...
Myth #2: People with autism are cognitively impaired.
Some people with autism do have some additional cognitive challenges, but IQ tests that rely on expression of language or pointing, outputs that can be unavailable or severely impaired in some autistic people, aren’t going to be sensitive enough to reveal to the intelligence that might lie within.
Autism does not equal unintelligent. Autism does not equal unable to learn. In fact, some of the smartest people living on the planet today have Asperger’s--Temple Grandin and Daniel Tammet, to name two. It’s been speculated by many that if Albert Einstein, Thomas Jefferson, and Wolfgang Mozart were alive today, they’d be diagnosed on the spectrum. A pretty smart crowd, if you ask me.
Myth #3: Autistic people don’t feel love.
I recently did a book event with Andrew Solomon, author of Far from the Tree, on World Autism Day in Toronto, and he admitted to having this misapprehension prior to doing the research for his book.
It’s easy to see where this preconception comes from, especially if viewed from a distance, “from the cover” so to speak. If a child can’t say “I love you,” if he doesn’t like to be hugged, if he can’t make eye contact and exchange all the magic that can happen in a shared gaze, if love can’t be reciprocated in the ways we traditionally show and feel it, is love there?
It is. Without question.
All of the parents I know and spoke with about autism love their autistic kids and feel loved in return. And I’ve witnessed it—in a knowing smile, in an exuberant hand flapping, in an unspoken energy, in how hard these kids work to please their parents.
Myth #4: People with autism are poor social communicators.
Wait, you’re thinking, this one can’t be a myth. This is the actual clinical description of autism. According to DSM IV, autism is characterized by difficulties in social interaction, verbal and nonverbal communication, and repetitive, restrictive behaviors. Even people with autism who can speak have trouble communicating, especially with comprehension of double meaning, facial expression, and body language. This deficit in social communication is a DEFINING symptom of autism.
So if it’s a defining symptom, how can it be a myth?
In March, I attended the Tucson Festival of Books to promote Love Anthony. In addition to the two panels I was on with other fiction writers, I was scheduled to be on a speaking panel with John Elder Robison. John has written three books—Look Me in the Eye, Be Different, and Raising Cubby. John has Asperger’s.
About ten minutes before our scheduled time to begin, the room was already filled to capacity (300) with people standing in the hall, willing to stay and only listen. John arrived, and I introduced myself. He said hello, gave me a courtesy, fleeting moment of eye contact, and then he paced.
We were supposed to sit side-by-side at a table before set microphones and cards bearing our names and next to a moderator, but John wasn’t going to be able to sit still. He needed to stand and move. The organizers adjusted, and I decided to join him and stand, too. Meanwhile, John continued moving, touching everything on the table as he passed it.
I do a lot of speaking, and I like to think I’m pretty good at it. One of the challenges in speaking in front of an audience of 300 is to make everyone feel included, like they’re part of an intimate conversation. It involves not just getting up and talking but talking TO PEOPLE, engaging them in what you have to say, sharing an experience together. In short, it involves social communication.
And here is John, pacing around with Asperger’s.
So I thought to myself, “Okay, Lisa. You’re probably going to have carry this hour. He’s not going to be able to do this.”
I couldn’t have been more wrong. He was AWESOME! He was smart, funny, dynamic, and incredibly entertaining. HE was the one who could’ve carried the whole hour (and pretty much did). After our presentation, the line of people waiting to connect with him personally and have books signed far exceeded the line of people in front of me.
So there you go. John has autism, AND he’s an exceptional communicator. Myth busted.
The great lesson in all of this has been told to me over and over by parents of children with autism. “If you’ve met one child with autism, you’ve met one child with autism.” Or, put another way—please don’t judge a book by its cover.
April 9, 2013
Making a Contribution
I’ve had the good fortune to see many of my “old” neuroscientist friends over the past year through book tour and speaking event travels or through the research I’m doing for my next book. I love listening to them talk passionately about their research, and I especially love that I can still understand it all, as I now spend my time writing novels rather than scientific research grants or papers.
Alzheimer’s, anxiety, bipolar, Huntington’s, autism, schizophrenia, Parkinson’s.
Cytokines, glutamate receptor upregulation, gene expression, caudate nucleus, amygdala, CAG expansion, GABA.
These brilliant scientists are making exciting and significant contributions to the body of knowledge that will someday lead to medical treatments and cures. While I still love hanging out with scientists and learning about their latest research results and next set of hypotheses, and I always leave feeling awed and inspired, I also invariably leave feeling a bit stirred up.
I used to do what they do! I have a Ph.D. in neuroscience from Harvard. I used to do brain research at prestigious places such as Mass General, McLean Hospital, and the NIH. I still could, but I’ve chosen to dedicate my career to writing novels instead. At times, this feels like a really strange choice. My former colleagues are making critical contributions to science. What am I doing?
I write about people living with neurological diseases or conditions who are ignored, feared, and misunderstood. I write novels. Not scientific research papers, not clinical review papers, not even non-fiction. Why on earth do I do this? What is the value in a neuroscientist writing fiction? What is my contribution? Is it to science or literature or something else entirely?
I’ve spent considerable time pondering these questions. Here’s what I’ve come up with.
Fiction is accessible. Unless directly affected, most people aren’t going to read a scientific research article about Alzheimer’s, brain injury, or autism. Most people probably aren’t going to read a non-fiction book about these topics either. Those texts tend to be too dry, too clinical, too technical, too impersonal, too intellectual. They’re often filled with facts and statistics.
Every 68 seconds, someone in the US is diagnosed with Alzheimer’s.
1 in 88 children in the US is on the autism spectrum.
The science is necessary (and fascinating to neuro-geeks like me), and the facts and statistics are staggering, but numbers aren’t what we’re all looking for. Five and half million Americans have Alzheimer’s Disease. They and all the people who love them are all in desperate need of learning more about this disease, but they want to understand it in a way that’s accessible. They want to understand it with their hearts, not just their heads.
What does it feel like to have Alzheimer’s, a traumatic brain injury, autism? Most of us don’t know, and reading the clinical literature is either too daunting or too scary or both.
Fiction is a powerful way in. Most people aren’t going to read the article about autism in the April issue of the Journal of Neuroscience. But they might read a novel about a family living with autism. Fiction gives us access to what might otherwise be too overwhelming to consider. Fiction can give us the humanity behind the science and the statistics.
If you read my novels, you will learn some real science and clinical information (yes, I sneak it in). But beyond intellectual knowledge, what I think and hope most readers take away from my books is a compassionate awareness.
Compassionate awareness. This is my contribution. And I believe it’s an important contribution because it is this kind of awareness that can help break down the stigma and alienation imposed on families affected by these diseases and conditions. It is compassionate awareness that says to the world, “I see you. You exist, and you matter. We care.”
While I’m proud of this contribution, I’d like to do more, and I’d like to ask for your help.
This month is Autism Awareness Month. My third novel, Love Anthony, is about autism. If you’ve read Love Anthony, and it’s made you more compassionately aware of autism as you walk through the world, if you finished it and felt educated, entertained, inspired, if you feel like you now have more sensitivity and empathy for families living with autism, then I’m asking you to get involved.
I’m asking you to take that compassionate awareness you now have and donate something to Autism Speaks or an autism organization of your choice. It doesn’t have to be much to make a big impact. I think it’s fair to guesstimate that at least two million Americans have read Still Alice. Imagine if each reader had donated $1 to the Alzheimer’s Association. That would’ve made a powerful and amazing contribution to Alzheimer’s care and research. Let’s do that for autism. Let’s see how powerful and amazing this readership can be.
Please consider making a contribution to Autism Speaks though this link:
http://www.autismspeaks.org/ways-give...
And if you do, please comment here or shout it out on Facebook or Twitter. Let others know, and maybe you’ll inspire them to contribute, too.
Thank you,
Lisa Genova
Alzheimer’s, anxiety, bipolar, Huntington’s, autism, schizophrenia, Parkinson’s.
Cytokines, glutamate receptor upregulation, gene expression, caudate nucleus, amygdala, CAG expansion, GABA.
These brilliant scientists are making exciting and significant contributions to the body of knowledge that will someday lead to medical treatments and cures. While I still love hanging out with scientists and learning about their latest research results and next set of hypotheses, and I always leave feeling awed and inspired, I also invariably leave feeling a bit stirred up.
I used to do what they do! I have a Ph.D. in neuroscience from Harvard. I used to do brain research at prestigious places such as Mass General, McLean Hospital, and the NIH. I still could, but I’ve chosen to dedicate my career to writing novels instead. At times, this feels like a really strange choice. My former colleagues are making critical contributions to science. What am I doing?
I write about people living with neurological diseases or conditions who are ignored, feared, and misunderstood. I write novels. Not scientific research papers, not clinical review papers, not even non-fiction. Why on earth do I do this? What is the value in a neuroscientist writing fiction? What is my contribution? Is it to science or literature or something else entirely?
I’ve spent considerable time pondering these questions. Here’s what I’ve come up with.
Fiction is accessible. Unless directly affected, most people aren’t going to read a scientific research article about Alzheimer’s, brain injury, or autism. Most people probably aren’t going to read a non-fiction book about these topics either. Those texts tend to be too dry, too clinical, too technical, too impersonal, too intellectual. They’re often filled with facts and statistics.
Every 68 seconds, someone in the US is diagnosed with Alzheimer’s.
1 in 88 children in the US is on the autism spectrum.
The science is necessary (and fascinating to neuro-geeks like me), and the facts and statistics are staggering, but numbers aren’t what we’re all looking for. Five and half million Americans have Alzheimer’s Disease. They and all the people who love them are all in desperate need of learning more about this disease, but they want to understand it in a way that’s accessible. They want to understand it with their hearts, not just their heads.
What does it feel like to have Alzheimer’s, a traumatic brain injury, autism? Most of us don’t know, and reading the clinical literature is either too daunting or too scary or both.
Fiction is a powerful way in. Most people aren’t going to read the article about autism in the April issue of the Journal of Neuroscience. But they might read a novel about a family living with autism. Fiction gives us access to what might otherwise be too overwhelming to consider. Fiction can give us the humanity behind the science and the statistics.
If you read my novels, you will learn some real science and clinical information (yes, I sneak it in). But beyond intellectual knowledge, what I think and hope most readers take away from my books is a compassionate awareness.
Compassionate awareness. This is my contribution. And I believe it’s an important contribution because it is this kind of awareness that can help break down the stigma and alienation imposed on families affected by these diseases and conditions. It is compassionate awareness that says to the world, “I see you. You exist, and you matter. We care.”
While I’m proud of this contribution, I’d like to do more, and I’d like to ask for your help.
This month is Autism Awareness Month. My third novel, Love Anthony, is about autism. If you’ve read Love Anthony, and it’s made you more compassionately aware of autism as you walk through the world, if you finished it and felt educated, entertained, inspired, if you feel like you now have more sensitivity and empathy for families living with autism, then I’m asking you to get involved.
I’m asking you to take that compassionate awareness you now have and donate something to Autism Speaks or an autism organization of your choice. It doesn’t have to be much to make a big impact. I think it’s fair to guesstimate that at least two million Americans have read Still Alice. Imagine if each reader had donated $1 to the Alzheimer’s Association. That would’ve made a powerful and amazing contribution to Alzheimer’s care and research. Let’s do that for autism. Let’s see how powerful and amazing this readership can be.
Please consider making a contribution to Autism Speaks though this link:
http://www.autismspeaks.org/ways-give...
And if you do, please comment here or shout it out on Facebook or Twitter. Let others know, and maybe you’ll inspire them to contribute, too.
Thank you,
Lisa Genova
March 14, 2013
Connecting with Lisa Genova, author of "Love Anthony"
Beautiful blog post by Kelly Gryglewicz, a woman I interviewed when researching autism for Love Anthony. Thank you again, Kelly. So truly grateful for our connection.
Connecting with Lisa Genova, author of "Love Anthony"
Kelly Gryglewicz, a staff member at the Autism Alliance of Metrowest and the mother of a son with autism, was interviewed by bestselling author Lisa Genova for her most recent book, Love Anthony, a novel about autism, motherhood, and loving without condition. In her blog post, Kelly reflects on that experience as well as the early days of her family's journey with autism and her reaction to the book. Lisa Genova will be discussing Love Anthony at an event to benefit the Autism Alliance of MetroWest on April 6th.
By Kelly Gryglewicz
In early 2011, a friend contacted me after meeting this great local author, Lisa Genova, at an Alzheimer’s event. In the course of their conversation, the author disclosed that she was currently writing her third novel and the topic was autism. As part of her writing process, she mentioned that she was looking to connect with families that live with autism. My friend recommended that she contact me, since my oldest son is diagnosed on the autism spectrum.
Soon after, in early March, I received an email from Lisa Genova and I gladly accepted her invitation to speak on the phone. Though I had spoken with many people over the years about our journey with autism, including television and newspaper reporters, I will admit I was a bit nervous to speak with Lisa. Her credentials were so impressive—a Harvard graduate, PhD, neuroscientist and New York Times best selling author. I was a stay-at-home mom who used to work in advertising; not exactly intellectual peers.
However, within a few minutes of our phone conversation, I immediately felt at ease. She was so NICE. I hadn’t expected her to be so nice. I guess I expected her to be much more clinical in her line of questioning. I had expected to answer the typical questions about autism that I had become accustomed to—What were the signs? When did you know? Does your son speak? What types of therapy does he receive? But instead, Lisa delved into the deep questions that most people are afraid to ask: Describe how you felt when you received the diagnosis of autism? How did you and your husband deal with this? What did it do to your marriage? Your friendships? Your extended family? Did it affect your career? How did the autism diagnosis affect your feelings toward your son? Your other children?
Instead of the thirty minute conversation I envisioned in my head, we talked for about two and a half hours. I cried when reflecting back on those dark days of initial diagnosis and the 30-40 hours of autism therapy in our home. I described a feeling of imprisonment that enveloped me. Our lives were ruled by this diagnosis and the quest to get our son help so that he could get “better” before the window of opportunity closed. It was a deeply personal conversation and I ended up disclosing feelings to Lisa that I had never even shared with members of my own family. She was nonjudgmental and understanding, having the unique experience of watching her cousin’s son—whom the book is inspired by—from birth, to autism diagnosis, and beyond.
When our conversation ended, I remember feeling as though I had just had a therapy session over the phone. I felt drained and uplifted at the same time. I hoped that I had given her a glimpse into what our lives were like—just one family living with autism, of the hundreds of thousands of stories out there. I knew in my heart that Lisa understood autism and how every individual with autism is different. I waited with anticipation for the book’s completion.
I began following Lisa on Facebook and was able to receive updates on her progress with Love Anthony. With the success of her other two books (Still Alice and Left Neglected), I knew that Love Anthony was going to be amazing.
In August of 2012, I received an advance copy of Love Anthony from Lisa in the mail. I could hardly wait to dive in. From the very first page, I was captivated—though admittedly I had a bias for this book. I laughed and cried as I read each page, connected with the characters, felt their pain and elation, and tried to understand this boy Anthony. This fictional Anthony was different from my son, yet alike in so many ways.
When I finished the book, I felt similar to how I felt after my long phone conversation with Lisa back in 2011, both drained and uplifted. The experience of reading the book mirrored my roller coaster experiences with autism. I immediately felt the need to connect with Lisa, so I wrote her an email with my thoughts and feelings about the book. I thanked her for writing the book and for allowing me to have a small voice in its development.
The underlying theme of Love Anthony is unconditional love and how we, as human beings, are all connected. The journey of how I came to know Lisa Genova certainly reinforces that notion for me—we are all truly connected.
Connecting with Lisa Genova, author of "Love Anthony"
Kelly Gryglewicz, a staff member at the Autism Alliance of Metrowest and the mother of a son with autism, was interviewed by bestselling author Lisa Genova for her most recent book, Love Anthony, a novel about autism, motherhood, and loving without condition. In her blog post, Kelly reflects on that experience as well as the early days of her family's journey with autism and her reaction to the book. Lisa Genova will be discussing Love Anthony at an event to benefit the Autism Alliance of MetroWest on April 6th.
By Kelly Gryglewicz
In early 2011, a friend contacted me after meeting this great local author, Lisa Genova, at an Alzheimer’s event. In the course of their conversation, the author disclosed that she was currently writing her third novel and the topic was autism. As part of her writing process, she mentioned that she was looking to connect with families that live with autism. My friend recommended that she contact me, since my oldest son is diagnosed on the autism spectrum.
Soon after, in early March, I received an email from Lisa Genova and I gladly accepted her invitation to speak on the phone. Though I had spoken with many people over the years about our journey with autism, including television and newspaper reporters, I will admit I was a bit nervous to speak with Lisa. Her credentials were so impressive—a Harvard graduate, PhD, neuroscientist and New York Times best selling author. I was a stay-at-home mom who used to work in advertising; not exactly intellectual peers.
However, within a few minutes of our phone conversation, I immediately felt at ease. She was so NICE. I hadn’t expected her to be so nice. I guess I expected her to be much more clinical in her line of questioning. I had expected to answer the typical questions about autism that I had become accustomed to—What were the signs? When did you know? Does your son speak? What types of therapy does he receive? But instead, Lisa delved into the deep questions that most people are afraid to ask: Describe how you felt when you received the diagnosis of autism? How did you and your husband deal with this? What did it do to your marriage? Your friendships? Your extended family? Did it affect your career? How did the autism diagnosis affect your feelings toward your son? Your other children?
Instead of the thirty minute conversation I envisioned in my head, we talked for about two and a half hours. I cried when reflecting back on those dark days of initial diagnosis and the 30-40 hours of autism therapy in our home. I described a feeling of imprisonment that enveloped me. Our lives were ruled by this diagnosis and the quest to get our son help so that he could get “better” before the window of opportunity closed. It was a deeply personal conversation and I ended up disclosing feelings to Lisa that I had never even shared with members of my own family. She was nonjudgmental and understanding, having the unique experience of watching her cousin’s son—whom the book is inspired by—from birth, to autism diagnosis, and beyond.
When our conversation ended, I remember feeling as though I had just had a therapy session over the phone. I felt drained and uplifted at the same time. I hoped that I had given her a glimpse into what our lives were like—just one family living with autism, of the hundreds of thousands of stories out there. I knew in my heart that Lisa understood autism and how every individual with autism is different. I waited with anticipation for the book’s completion.
I began following Lisa on Facebook and was able to receive updates on her progress with Love Anthony. With the success of her other two books (Still Alice and Left Neglected), I knew that Love Anthony was going to be amazing.
In August of 2012, I received an advance copy of Love Anthony from Lisa in the mail. I could hardly wait to dive in. From the very first page, I was captivated—though admittedly I had a bias for this book. I laughed and cried as I read each page, connected with the characters, felt their pain and elation, and tried to understand this boy Anthony. This fictional Anthony was different from my son, yet alike in so many ways.
When I finished the book, I felt similar to how I felt after my long phone conversation with Lisa back in 2011, both drained and uplifted. The experience of reading the book mirrored my roller coaster experiences with autism. I immediately felt the need to connect with Lisa, so I wrote her an email with my thoughts and feelings about the book. I thanked her for writing the book and for allowing me to have a small voice in its development.
The underlying theme of Love Anthony is unconditional love and how we, as human beings, are all connected. The journey of how I came to know Lisa Genova certainly reinforces that notion for me—we are all truly connected.
March 4, 2013
Still Alice THE PLAY
A few words from the director of Still Alice THE PLAY, opening this April at the Lookingglass Theatre in Chicago
Christine Mary Dunford on Still Alice
I was interested in adapting and directing the book Still Alice, by Lisa Genova, for two reasons: one was personal; the other professional.
Personally, I have a quirky memory. Since as far back as I can remember, I have been able to rely on my memory failing me at fantastically inopportune times. Because of this I have a deep interest in memory, and great empathy for others who cannot rely on their memory to feel anchored in day-to-day life.
Professionally, I started working with people with Alzheimer’s disease, and noticed that a lot of discussion about the disease was about loss, or focused on people dying from Alzheimers. I am interested in thinking about living with memory loss. Still Alice was one of the first books I read that presented a person with Alzheimer’s disease, Alice, as a whole person working, like all of us, to stay connected.
Early in the development of the script, a friend cautioned that there was no clear antagonist in my story—except Alzheimer’s—and that without an antagonist there could be no drama. This observation helped me realize that the antagonist in the play is not Alzheimer’s, but something much closer to all of us. Something very scary to most of us. Change, and especially change that we cannot control. Still Alice is a play about a woman who uses her creativity and humor to stay connected to herself and to her family in a world changing must faster then she expected. I could not be more thrilled about working with an amazing cast of actors and incredibly ingenious designers on Still Alice this Spring.
Christine Mary Dunford on Still Alice
I was interested in adapting and directing the book Still Alice, by Lisa Genova, for two reasons: one was personal; the other professional.
Personally, I have a quirky memory. Since as far back as I can remember, I have been able to rely on my memory failing me at fantastically inopportune times. Because of this I have a deep interest in memory, and great empathy for others who cannot rely on their memory to feel anchored in day-to-day life.
Professionally, I started working with people with Alzheimer’s disease, and noticed that a lot of discussion about the disease was about loss, or focused on people dying from Alzheimers. I am interested in thinking about living with memory loss. Still Alice was one of the first books I read that presented a person with Alzheimer’s disease, Alice, as a whole person working, like all of us, to stay connected.
Early in the development of the script, a friend cautioned that there was no clear antagonist in my story—except Alzheimer’s—and that without an antagonist there could be no drama. This observation helped me realize that the antagonist in the play is not Alzheimer’s, but something much closer to all of us. Something very scary to most of us. Change, and especially change that we cannot control. Still Alice is a play about a woman who uses her creativity and humor to stay connected to herself and to her family in a world changing must faster then she expected. I could not be more thrilled about working with an amazing cast of actors and incredibly ingenious designers on Still Alice this Spring.
January 28, 2013
Inside scoop - The story of Still Alice
American Libraries Magazine
By George Eberhart
The story of Still Alice
Lisa Genova, neuroscientist and bestselling author of Still Alice (2008), Left Neglected (2011), and Love Anthony (2012), presented the Arthur Curley Memorial Lecture on Saturday morning, January 27. Although her more recent novels focused on autism and hemispatial neglect, Genova chose to talk about her first book, which revolved around a 50-year-old woman, Alice Howland, who develops early-onset Alzheimer’s.
After getting her PhD in neuroscience from Harvard University, Genova decided to find out as much as she could about Alzheimer’s when her grandmother was diagnosed with the disease. She knew about the sticky proteins that prevent neurotransmission from brain cell to brain cell and lead to dementia, but this only helped “the scientist in me, not the granddaughter in me.”
Genova said she decided to write a story about Alzheimer’s when she realized that most self-help books were written “from the outside looking in.” Perhaps a novel could help others understand “what it really feels like from the standpoint of the patient.”
Only in 2003, when she was taking time off to raise her child and going through a divorce did she decide to sit down and write the book. “Scientists don’t write novels,” she worried. “I felt completely crazy not doing research.” However, her Harvard experience opened doors for her that usually remain closed for other writers. Genova was able to talk to leading neurologists about their experiences, and she was invited to join an online group of early-onset Alzheimer’s patients who called themselves PWD (“People With Dementia”). The group nicknamed her TAB (“Temporarily All-Brained”). “I resolved to learn as much as I could about the truth about living with Alzheimer’s, then launch into fiction,” she said.
It took one-and-a-half years to write the book, and “then came the literary agents,” Genova remembered. “I had to self-publish it because all the agents thought a book about Alzheimer’s was too sad, depressing, and scary. But in 2008 it was picked up by Simon & Schuster and it spent 41 weeks on the bestseller list.” And now a movie based on Still Alice will be filmed in the fall of 2013, starring major Hollywood actors (though she could not give any names).
“5.4 million Americans have Alzheimer’s,” Genova said. “We can learn about the science and the statistics, but with a story we can see how we are all similar and gain compassion and empathy for what a character is going through.” She added that library book events are her favorite, because they are “packed” with interested readers.
She is now working on a novel about Huntington’s disease, a genetic disorder that affects muscular coordination and cognitive abilities.
By George Eberhart
The story of Still Alice
Lisa Genova, neuroscientist and bestselling author of Still Alice (2008), Left Neglected (2011), and Love Anthony (2012), presented the Arthur Curley Memorial Lecture on Saturday morning, January 27. Although her more recent novels focused on autism and hemispatial neglect, Genova chose to talk about her first book, which revolved around a 50-year-old woman, Alice Howland, who develops early-onset Alzheimer’s.
After getting her PhD in neuroscience from Harvard University, Genova decided to find out as much as she could about Alzheimer’s when her grandmother was diagnosed with the disease. She knew about the sticky proteins that prevent neurotransmission from brain cell to brain cell and lead to dementia, but this only helped “the scientist in me, not the granddaughter in me.”
Genova said she decided to write a story about Alzheimer’s when she realized that most self-help books were written “from the outside looking in.” Perhaps a novel could help others understand “what it really feels like from the standpoint of the patient.”
Only in 2003, when she was taking time off to raise her child and going through a divorce did she decide to sit down and write the book. “Scientists don’t write novels,” she worried. “I felt completely crazy not doing research.” However, her Harvard experience opened doors for her that usually remain closed for other writers. Genova was able to talk to leading neurologists about their experiences, and she was invited to join an online group of early-onset Alzheimer’s patients who called themselves PWD (“People With Dementia”). The group nicknamed her TAB (“Temporarily All-Brained”). “I resolved to learn as much as I could about the truth about living with Alzheimer’s, then launch into fiction,” she said.
It took one-and-a-half years to write the book, and “then came the literary agents,” Genova remembered. “I had to self-publish it because all the agents thought a book about Alzheimer’s was too sad, depressing, and scary. But in 2008 it was picked up by Simon & Schuster and it spent 41 weeks on the bestseller list.” And now a movie based on Still Alice will be filmed in the fall of 2013, starring major Hollywood actors (though she could not give any names).
“5.4 million Americans have Alzheimer’s,” Genova said. “We can learn about the science and the statistics, but with a story we can see how we are all similar and gain compassion and empathy for what a character is going through.” She added that library book events are her favorite, because they are “packed” with interested readers.
She is now working on a novel about Huntington’s disease, a genetic disorder that affects muscular coordination and cognitive abilities.
January 3, 2013
Creativity, Fear, and Flying -- Notes from My Writing Journal, 4/16/11
I'm in Cranston, RI, early for my very first anti-gravity yoga class. SO excited! I love this feeling--trying something new, opening up to a new experience. It reminds me of the year when I was writing STILL ALICE--acting, dancing, dating again after my divorce. I hope this class opens up the parts of me having to do with creativity and fearlessness. I need to call on both of these qualities to write LOVE ANTHONY.
I haven't really started writing yet. I've done a TON of research on autism, much more than I did for Alzheimer's even and much more than for Left Neglect. There's so much more written about autism--and oddly, really less is known about it. I've talked to about a half dozen parents so far--raw, honest, incredibly moving conversations that still play in my head. Lisa, you've done enough to get started. Go to Nantucket next week, then begin.
Creativity and fearlessness. I love this combination. So powerful, so ALIVE. The ingredients of powerful, alive writing. I need to feed this as much as possible through things like this yoga class. Maybe also an improv class in Boston? That would awaken an old muscle, a part of my soul I've been ignoring. What else? A dance class would be great. Make the time.
How else can I feed creativity and fearlessness? Maybe rock wall climbing? Maybe go to Italy in November for Ann Hood's writing retreat. The energy of the writers, the scenery, the FOOD--talk about feeding creativity, feeding the soul!
And I will have two weeks in the Margo Gelb Dune Shack in September, which does scare me a bit, to be totally alone, especially at night (plus no electricity, no plumbing)--that should help with fearlessness, making me feel powerful, giving me the courage that I need to write this book. And it will give me the quiet space and time to create.
Okay, it's time for class. I'm scared but excited--ready to fly!
I haven't really started writing yet. I've done a TON of research on autism, much more than I did for Alzheimer's even and much more than for Left Neglect. There's so much more written about autism--and oddly, really less is known about it. I've talked to about a half dozen parents so far--raw, honest, incredibly moving conversations that still play in my head. Lisa, you've done enough to get started. Go to Nantucket next week, then begin.
Creativity and fearlessness. I love this combination. So powerful, so ALIVE. The ingredients of powerful, alive writing. I need to feed this as much as possible through things like this yoga class. Maybe also an improv class in Boston? That would awaken an old muscle, a part of my soul I've been ignoring. What else? A dance class would be great. Make the time.
How else can I feed creativity and fearlessness? Maybe rock wall climbing? Maybe go to Italy in November for Ann Hood's writing retreat. The energy of the writers, the scenery, the FOOD--talk about feeding creativity, feeding the soul!
And I will have two weeks in the Margo Gelb Dune Shack in September, which does scare me a bit, to be totally alone, especially at night (plus no electricity, no plumbing)--that should help with fearlessness, making me feel powerful, giving me the courage that I need to write this book. And it will give me the quiet space and time to create.
Okay, it's time for class. I'm scared but excited--ready to fly!
December 27, 2012
Author Interview with Lisa Genova on her book, Love Anthony
Thank you, Kelli, for this great interview!
1. Tell us about you and your book
I’m a neuroscientist turned novelist, and the stories I write portray people with neurological conditions who are misunderstood, feared, or ignored. My newest book, Love Anthony, is about the intersecting journeys of two women and what they learn through the life of a boy with autism, one rediscovering herself and the kind of love she’s capable of and the other finding peace in the realization that the love and connection she felt for her autistic son mattered.
2. How do you find time to “do it all”?
I don’t! Truly. And this is a conscious decision, to not do it all. I have three children (ages 12, 4, and 2), a husband, a house, a book deadline, and at times like now, a book tour. Each day I make deliberate choices in an effort to stay in balance and sane, and this always means leaving many, many things undone. When I’m not on book tour, I typically write in the morning (8-12) and go to yoga at noon. I’m home with the kids from 1:00 on. I don’t talk on the phone much (and never in the car). I usually don’t answer any work-related emails on the weekends (this begins Friday at 5 pm). The house is not as neat and clean as I’d like it to be, the garage is embarrassingly disorganized, the local burrito place makes our dinners a couple of nights a week, and I can only hope to paint the baby’s bedroom before she’s out of diapers. Although my philosophy is to say ‘yes’ whenever possible, I also know it’s sometimes necessary to say ‘no,’ which means I decline book event opportunities if it means being away from my family and real life for too many days. My days are full and fulfilling because I purposely don’t do it all. At the end of the day, I’ll always choose to sit on the couch with my husband and a Moscow Mule than clean the garage.
3. Do you have pets? Tell us your favorite pet story!
No pets.
4. What would you tell your 17 year old self if you could?
Hang in there, keep doing what you’re doing. And dance more.
5. Describe yourself in only 3 words.
Curious. Fearless. Learning.
6. It is 9 pm on a typical weekday evening. Where are you and what are you doing?
Our oldest child has just gone to bed. My husband and I are sitting on the couch, talking about the day.
7. Why did you take on this project? Does it hold special meaning for you?
The book comes from a deeply personal place. My cousin Tracey and I were both pregnant in 2000. She had twins, a boy and a girl, and I had a girl. We became new mothers at the same time, and it drew us close. Our children are twelve now. Her beautiful son, Anthony, has autism, and he still doesn’t speak. I wrote this book for her.
1. Tell us about you and your book
I’m a neuroscientist turned novelist, and the stories I write portray people with neurological conditions who are misunderstood, feared, or ignored. My newest book, Love Anthony, is about the intersecting journeys of two women and what they learn through the life of a boy with autism, one rediscovering herself and the kind of love she’s capable of and the other finding peace in the realization that the love and connection she felt for her autistic son mattered.
2. How do you find time to “do it all”?
I don’t! Truly. And this is a conscious decision, to not do it all. I have three children (ages 12, 4, and 2), a husband, a house, a book deadline, and at times like now, a book tour. Each day I make deliberate choices in an effort to stay in balance and sane, and this always means leaving many, many things undone. When I’m not on book tour, I typically write in the morning (8-12) and go to yoga at noon. I’m home with the kids from 1:00 on. I don’t talk on the phone much (and never in the car). I usually don’t answer any work-related emails on the weekends (this begins Friday at 5 pm). The house is not as neat and clean as I’d like it to be, the garage is embarrassingly disorganized, the local burrito place makes our dinners a couple of nights a week, and I can only hope to paint the baby’s bedroom before she’s out of diapers. Although my philosophy is to say ‘yes’ whenever possible, I also know it’s sometimes necessary to say ‘no,’ which means I decline book event opportunities if it means being away from my family and real life for too many days. My days are full and fulfilling because I purposely don’t do it all. At the end of the day, I’ll always choose to sit on the couch with my husband and a Moscow Mule than clean the garage.
3. Do you have pets? Tell us your favorite pet story!
No pets.
4. What would you tell your 17 year old self if you could?
Hang in there, keep doing what you’re doing. And dance more.
5. Describe yourself in only 3 words.
Curious. Fearless. Learning.
6. It is 9 pm on a typical weekday evening. Where are you and what are you doing?
Our oldest child has just gone to bed. My husband and I are sitting on the couch, talking about the day.
7. Why did you take on this project? Does it hold special meaning for you?
The book comes from a deeply personal place. My cousin Tracey and I were both pregnant in 2000. She had twins, a boy and a girl, and I had a girl. We became new mothers at the same time, and it drew us close. Our children are twelve now. Her beautiful son, Anthony, has autism, and he still doesn’t speak. I wrote this book for her.
December 13, 2012
Fiction author delves into the mind
A great review of Love Anthony from The Vancouver Sun on December 7, 2012
Lisa Genova, author of Love Anthony and Still Alice, holds a PhD in neuroscience from Harvard.
Lisa Genova is a powerhouse author — ever since she scared the living daylights out of me with Still Alice, I’ve been impressed with her ability to take a scientific, medical topic and turn it into a fascinating human story filled with insight and understanding.
Still Alice told the story of a university professor’s descent into early-onset Alzheimer’s disease, and it told it with great authority since Genova holds a PhD in neuroscience from Harvard. She knows what she is talking about when it comes to the brain.
Genova’s second book Left Neglected told the story of a traumatic brain injury that left the victim unaware of the left side of her body.
This time around, she brings readers Love Anthony, a very unconventional book that takes us into the mind of a young boy with autism. Genova uses a storytelling technique to express Anthony’s perspective that will require readers to suspend their disbelief somewhat, but it’s worth it.
The novel tells the story of Olivia Donatelli, whose autistic son Anthony died when he was eight years old. Anthony was unable to speak, he hated to be touched and he hardly ever made eye contact. Olivia and her husband split up after Anthony dies and Olivia moves to Nantucket, where she crosses paths with Beth Ellis. Ellis has recently split up from her husband as well, and has started to write again after a long absence. The strange thing is that when she sits down to write, it is Anthony’s voice that lands on the page.
“I’m always hearing about how my brain doesn’t work right. . . . But it doesn’t feel broken to me,” Anthony writes through Beth as she begins to tell his story. Anthony understands what everyone around him is saying, he just can’t explain himself because he says his voice is broken.
Aside from the compelling autism sections and insights, the parallel stories of Beth and Olivia are easy to read and enjoyable, although there is some unnecessary and somewhat mundane description in parts of the novel.
If you’re interested in autism, however, this book is a must read. As Genova writes in the author’s note at the end of the book, “ ... the neuroanatomical, neurochemical, and neurophysiological underpinnings of autism are poorly understood.” She writes that in the time it took to write the book, the incidence of autism rose from one in 110 children (in 2010) to one in 88 in March 2012. She says every person with autism is unique and that she is not trying to represent all autistic people.
“The spectrum is long and wide, and we’re all on it,” Genova writes. “Once you believe this, it becomes easy to see how we’re all connected.”
Lisa Genova, author of Love Anthony and Still Alice, holds a PhD in neuroscience from Harvard.
Lisa Genova is a powerhouse author — ever since she scared the living daylights out of me with Still Alice, I’ve been impressed with her ability to take a scientific, medical topic and turn it into a fascinating human story filled with insight and understanding.
Still Alice told the story of a university professor’s descent into early-onset Alzheimer’s disease, and it told it with great authority since Genova holds a PhD in neuroscience from Harvard. She knows what she is talking about when it comes to the brain.
Genova’s second book Left Neglected told the story of a traumatic brain injury that left the victim unaware of the left side of her body.
This time around, she brings readers Love Anthony, a very unconventional book that takes us into the mind of a young boy with autism. Genova uses a storytelling technique to express Anthony’s perspective that will require readers to suspend their disbelief somewhat, but it’s worth it.
The novel tells the story of Olivia Donatelli, whose autistic son Anthony died when he was eight years old. Anthony was unable to speak, he hated to be touched and he hardly ever made eye contact. Olivia and her husband split up after Anthony dies and Olivia moves to Nantucket, where she crosses paths with Beth Ellis. Ellis has recently split up from her husband as well, and has started to write again after a long absence. The strange thing is that when she sits down to write, it is Anthony’s voice that lands on the page.
“I’m always hearing about how my brain doesn’t work right. . . . But it doesn’t feel broken to me,” Anthony writes through Beth as she begins to tell his story. Anthony understands what everyone around him is saying, he just can’t explain himself because he says his voice is broken.
Aside from the compelling autism sections and insights, the parallel stories of Beth and Olivia are easy to read and enjoyable, although there is some unnecessary and somewhat mundane description in parts of the novel.
If you’re interested in autism, however, this book is a must read. As Genova writes in the author’s note at the end of the book, “ ... the neuroanatomical, neurochemical, and neurophysiological underpinnings of autism are poorly understood.” She writes that in the time it took to write the book, the incidence of autism rose from one in 110 children (in 2010) to one in 88 in March 2012. She says every person with autism is unique and that she is not trying to represent all autistic people.
“The spectrum is long and wide, and we’re all on it,” Genova writes. “Once you believe this, it becomes easy to see how we’re all connected.”
December 6, 2012
Notes from My LOVE ANTHONY Writing Journal, 11/30/11
Just realized I'm on chapter 20. Sounds substantial, doesn't it? I'm at about 46,000 words and 200 pages, so it's getting there, baby. I go back and forth lately between thinking it's brilliant to thinking it's an absolute mess. I'm worried that Beth's story doesn't tie in strongly enough to Olivia's, that it's like--SO WHAT? Why not just tell Olivia's and Anthony's story?
I think because their story is too internal. Beth's story provides the movement, the action and immediacy. But why not tell Olivia's story in that way--tell the story of this mother who has a son with autism, how she first suspects it, then the diagnosis, living with it, etc--and make it linear? Because that's too predictable. It's been done. Mother has a child, expects a "normal" life, then there is a diagnosis and a deviated development, a deviated life. This mother's point of view has been told.
I'm hoping that this story offers something new and unexpected, that readers will learn about the experience of autism from the more severely affected end of the spectrum without feeling like they're reading a clinical manual, without being hit directly over the head with it. I want to tell a great story and give a voice to this voiceless child. How does he experience the world, emotions, relationships? How does his life matter? I want readers to experience what it might feel like to have this kind of autism. I think a straightforward, linear story of only Olivia and Anthony without Beth doesn't hold as much power somehow.
So finish the first draft, Lisa, and if there are ways that you can tighten Beth's ties to autism in metaphor, do it then. You've planted the seeds. Make sure that elements from each Anthony and Olivia chapter tie in to elements of Beths' chapters--illustrate that the spectrum is long and wide, and we're all on it. And then it will be brilliant, my dear. And when the first draft is done, have Tracey read it, and listen with an open heart to her feedback.
For now though, you are writing chapter 20. So what happens next?
I think because their story is too internal. Beth's story provides the movement, the action and immediacy. But why not tell Olivia's story in that way--tell the story of this mother who has a son with autism, how she first suspects it, then the diagnosis, living with it, etc--and make it linear? Because that's too predictable. It's been done. Mother has a child, expects a "normal" life, then there is a diagnosis and a deviated development, a deviated life. This mother's point of view has been told.
I'm hoping that this story offers something new and unexpected, that readers will learn about the experience of autism from the more severely affected end of the spectrum without feeling like they're reading a clinical manual, without being hit directly over the head with it. I want to tell a great story and give a voice to this voiceless child. How does he experience the world, emotions, relationships? How does his life matter? I want readers to experience what it might feel like to have this kind of autism. I think a straightforward, linear story of only Olivia and Anthony without Beth doesn't hold as much power somehow.
So finish the first draft, Lisa, and if there are ways that you can tighten Beth's ties to autism in metaphor, do it then. You've planted the seeds. Make sure that elements from each Anthony and Olivia chapter tie in to elements of Beths' chapters--illustrate that the spectrum is long and wide, and we're all on it. And then it will be brilliant, my dear. And when the first draft is done, have Tracey read it, and listen with an open heart to her feedback.
For now though, you are writing chapter 20. So what happens next?
