Lisa Genova's Blog - Posts Tagged "als"
Beginning Book 5
After many months of research, and writing bits of this and that, I need to start chapter 1, the legit beginning of this next book. SO much resistance here. I feel like I don't know these people well enough to get started. But you're not supposed to, remember? That's how this relationship starts. You don't know them yet. You can only know them by writing them. So how do you solve this dilemma, Lisa? You begin writing.
You can (and will) adjust whatever doesn't work, right? Right. You've done this before, so don't panic. What is this book about other than ALS? Regret. Forgiveness. Feeling trapped. Letting go. Communication. Connection. Death. Freedom. BOOM. There it is, the whole book. Trust that you have it. Your job is to show up to the page/computer and allow it to come, word by word. The story and details will unfold as they come.
You don't get to know the whole thing before you begin--like any relationship, right? You agree to leap in not knowing everything about the person, not knowing how the journey will unfold, how it will end. This is how it must begin. Beginnings take courage.
So get to it, girl. Pour your heart and soul into this one. Don't hold back. Let it heal you.
You can (and will) adjust whatever doesn't work, right? Right. You've done this before, so don't panic. What is this book about other than ALS? Regret. Forgiveness. Feeling trapped. Letting go. Communication. Connection. Death. Freedom. BOOM. There it is, the whole book. Trust that you have it. Your job is to show up to the page/computer and allow it to come, word by word. The story and details will unfold as they come.
You don't get to know the whole thing before you begin--like any relationship, right? You agree to leap in not knowing everything about the person, not knowing how the journey will unfold, how it will end. This is how it must begin. Beginnings take courage.
So get to it, girl. Pour your heart and soul into this one. Don't hold back. Let it heal you.
Why did Stephen Hawking Live So Long?
When Stephen Hawking was diagnosed with motor neurone disease (ALS) at the age of 21, he was told he had two years left to live. Astoundingly, he lived another 55 years with this disease. Average life expectancy with ALS is 3 years. About 20 percent of people live five years after their diagnosis, 10 percent live ten years after diagnosis and 5 percent live twenty years or more.
How did Hawking live so long with ALS? This disease typically strikes between the ages of 40-70. Some physicians theorize that Hawking’s younger onset might reflect a version of the disease that proceeds more slowly and plateaus.
Yet, his ALS did proceed. The motor neurons that fed his voluntary muscles degenerated. He lost the ability to walk, type, chew, swallow, speak, and eventually breathe. Without a trachestomy, invasive mechanical ventilation, and 24/7 life support, he would’ve died of respiratory failure 33 years ago.
Invasive ventilation can, in theory, allow someone with ALS to achieve an unabbreviated lifespan, but living on a vent is typically fraught with difficulties that make a long life improbable. Mucus accumulates and regularly forms a plug that blocks the airway and needs to be vigilantly detected and suctioned else the patient will suffocate. Pneumonia, bed sores, infections, and human error are persistent threats. Life on a ventilator must be constantly monitored and tended to, and so, unless a family member like Stephen’s first wife Jane Wilde, has devoted her or his life to this role, it is expensive, costing $200-400,000 per year in private care. Only 7% of people with ALS choose to go on invasive ventilation, and of those, very few live as long as Stephen Hawking.
So aside from the possibility of slow-moving neurodegeneration and top-notch care, what kept him going for 55 years? I think it had something to do with the will to live a meaningful life.
Most people with ALS become prisoners in their paralyzed bodies, only able to participate in life as passive passengers. A life of adventure, productivity, and inspired purpose is not easily imaginable or achievable.
But Stephen Hawking didn’t need his body. He flourished in his mind. I touch on this in my new novel, Every Note Played, in which the main character is a concert pianist with ALS:
Stephen Hawking is a theoretical physicist and a genius. He can live in the realm of his mind. Richard can’t. He looks down at his dangling hands. His world, his fascination, his reason, was the piano. If he were a brilliant theoretical physicist with ALS, he might hope for thirty more years. As a pianist with ALS, he’s not buying any new calendars.
75% of people with ALS remain intellectually intact. A quarter develop symptoms of frontotemporal lobe dementia. Here, Hawking caught a break. He trained his mind to think without the use of pen and paper, chalk and board.
He did the mathematical equations that led to his discovery of Hawking radiation in his head. In his quest to find a single complete theory that would explain the beginning and the laws of universe, he contributed to ideas, conversations, and advancements in thought on the singularity theorem, black holes, wormholes, baby universes, and more. His extraordinary imagination, curiosity, and brilliance were unaffected by the ravages of ALS, and he found great meaning in living, leaving his mark in space and time far beyond the confines of his wheelchair.
How did Hawking live so long with ALS? This disease typically strikes between the ages of 40-70. Some physicians theorize that Hawking’s younger onset might reflect a version of the disease that proceeds more slowly and plateaus.
Yet, his ALS did proceed. The motor neurons that fed his voluntary muscles degenerated. He lost the ability to walk, type, chew, swallow, speak, and eventually breathe. Without a trachestomy, invasive mechanical ventilation, and 24/7 life support, he would’ve died of respiratory failure 33 years ago.
Invasive ventilation can, in theory, allow someone with ALS to achieve an unabbreviated lifespan, but living on a vent is typically fraught with difficulties that make a long life improbable. Mucus accumulates and regularly forms a plug that blocks the airway and needs to be vigilantly detected and suctioned else the patient will suffocate. Pneumonia, bed sores, infections, and human error are persistent threats. Life on a ventilator must be constantly monitored and tended to, and so, unless a family member like Stephen’s first wife Jane Wilde, has devoted her or his life to this role, it is expensive, costing $200-400,000 per year in private care. Only 7% of people with ALS choose to go on invasive ventilation, and of those, very few live as long as Stephen Hawking.
So aside from the possibility of slow-moving neurodegeneration and top-notch care, what kept him going for 55 years? I think it had something to do with the will to live a meaningful life.
Most people with ALS become prisoners in their paralyzed bodies, only able to participate in life as passive passengers. A life of adventure, productivity, and inspired purpose is not easily imaginable or achievable.
But Stephen Hawking didn’t need his body. He flourished in his mind. I touch on this in my new novel, Every Note Played, in which the main character is a concert pianist with ALS:
Stephen Hawking is a theoretical physicist and a genius. He can live in the realm of his mind. Richard can’t. He looks down at his dangling hands. His world, his fascination, his reason, was the piano. If he were a brilliant theoretical physicist with ALS, he might hope for thirty more years. As a pianist with ALS, he’s not buying any new calendars.
75% of people with ALS remain intellectually intact. A quarter develop symptoms of frontotemporal lobe dementia. Here, Hawking caught a break. He trained his mind to think without the use of pen and paper, chalk and board.
He did the mathematical equations that led to his discovery of Hawking radiation in his head. In his quest to find a single complete theory that would explain the beginning and the laws of universe, he contributed to ideas, conversations, and advancements in thought on the singularity theorem, black holes, wormholes, baby universes, and more. His extraordinary imagination, curiosity, and brilliance were unaffected by the ravages of ALS, and he found great meaning in living, leaving his mark in space and time far beyond the confines of his wheelchair.
Notes from My Writing Journal: Walking with Elise
Chapter 7, baby!!
Okay, what happens next? We need Karina and Richard in the same room again. Actually, I probably need a chapter about her and her life—home, teaching, with Grace. What is unsettled in her and why is seeing Richard again such a necessary risk? What does she want?
I need to work more on her backstory, make her three dimensional, more believable. How does she spend her days? Who is her best friend? A neighbor? What would this person lend to Karina and the narrative—would she push Karina toward a career in jazz? A new relationship, moving on past Richard? Would she be a voice/opinion about Richard? Comedic relief?
The neighbor teaches at Berkeley School of Music and has no classes on Fridays. She and Karina always meet for a coffee or a walk. She’s always treated Karina as a colleague, like a real musician, a status of equality Karina doesn’t feel she deserves.
She and Richard moved to Boston, and then she was pregnant and on bedrest with pre-eclampsia, and Grace was five weeks premature. Richard was always traveling or practicing. She didn’t know anyone in Boston—she had no family to help her with Grace. She had no time for piano, for finding a footing in her career. She blames Richard, Grace, her religion, Boston. But in truth, she was afraid.
Richard’s career rocketed into the stratosphere so fast, a dot in the sky. She felt that no matter what she did, she’d never reach that height. She could see no possibility of success for herself as a jazz pianist that could match his, so she never even tried.
That her own career had to be in comparison to his is ridiculous. The shadow he cast left her in perpetual shade, cold. His huge success made her feel small.
Making a career in music is next to impossible. It’s a fringe undertaking—most people end up playing weddings, bar mitzvahs, in schools, private lessons. But what Richard achieved—it’s the holy grail, winning the lottery, like saying you’ve been to the moon. He’s in an elite crowd. His success intimidated her. Every opportunity felt too miniscule, too unimpressive, too rinky-dink to bother. She convinced herself that her time was better spent raising Grace, supporting Richard, being the good wife.
Okay, so write a chapter with Karina walking with her neighbor, Elise, around the reservoir.
Okay, what happens next? We need Karina and Richard in the same room again. Actually, I probably need a chapter about her and her life—home, teaching, with Grace. What is unsettled in her and why is seeing Richard again such a necessary risk? What does she want?
I need to work more on her backstory, make her three dimensional, more believable. How does she spend her days? Who is her best friend? A neighbor? What would this person lend to Karina and the narrative—would she push Karina toward a career in jazz? A new relationship, moving on past Richard? Would she be a voice/opinion about Richard? Comedic relief?
The neighbor teaches at Berkeley School of Music and has no classes on Fridays. She and Karina always meet for a coffee or a walk. She’s always treated Karina as a colleague, like a real musician, a status of equality Karina doesn’t feel she deserves.
She and Richard moved to Boston, and then she was pregnant and on bedrest with pre-eclampsia, and Grace was five weeks premature. Richard was always traveling or practicing. She didn’t know anyone in Boston—she had no family to help her with Grace. She had no time for piano, for finding a footing in her career. She blames Richard, Grace, her religion, Boston. But in truth, she was afraid.
Richard’s career rocketed into the stratosphere so fast, a dot in the sky. She felt that no matter what she did, she’d never reach that height. She could see no possibility of success for herself as a jazz pianist that could match his, so she never even tried.
That her own career had to be in comparison to his is ridiculous. The shadow he cast left her in perpetual shade, cold. His huge success made her feel small.
Making a career in music is next to impossible. It’s a fringe undertaking—most people end up playing weddings, bar mitzvahs, in schools, private lessons. But what Richard achieved—it’s the holy grail, winning the lottery, like saying you’ve been to the moon. He’s in an elite crowd. His success intimidated her. Every opportunity felt too miniscule, too unimpressive, too rinky-dink to bother. She convinced herself that her time was better spent raising Grace, supporting Richard, being the good wife.
Okay, so write a chapter with Karina walking with her neighbor, Elise, around the reservoir.
ALS Film Review
Have you seen The Theory of Everything? It's Not Yet Dark? Imber's Left Hand? I review 6 films about ALS here....
So Much, So Fast
This was the first documentary about ALS that I watched. An inspirational and heartbreaking story about architect/builder Stephen Heywood, diagnosed with ALS at age 29, and his brilliant brother Jamie, who became obsessively driven to find a cure. I fell in love with the Heywoods. I wanted to be part of their family and Jamie’s renegade quest.
Jamie founded ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company, a place I came to know well while writing EVERY NOTE PLAYED. I met with Jamie and Stephen’s other brother, Ben, in doing the research for my book. They shared the brutality and intimacy, the reality and the hope in loving someone with ALS. If, like me, you can’t get enough of these brothers, Jonathan Weiner pens their story in His Brother’s Keeper. Stephen died in 2006.
Imber’s Left Hand
I LOVED this documentary about artist Jon Imber. As ALS paralyzes his right hand, he learns to paint with his left, and then with both hands held together at his waist. He painted more than 100 portraits in 4 months like this. His determination to keep painting, to keep seeing, to keep loving and growing in the presence of crippling physical demise is awe-inspiring and heroic. His wife Jill said, “What you do at the end of your life is an interesting doorway.� Wow.
The Theory of Everything
I saw this movie about theoretical physicist Stephen Hawking about a week before the Golden Globes in 2015. I was mesmerized by Eddie Redmayne’s portrayal of Hawking with ALS, how he embodied the changes in physicality that accompany increasing paralysis with such authenticity and believability. A few days later and the night before the Golden Globes, I attended a swanky party for Still Alice in Beverly Hills. Before walking through the front door, I told myself to be cool. But the first person I met was Eddie, and cool laughed at me as it flew right out the window. I gushed all over him. I was horrified with myself as I was gushing but couldn’t stop myself. When I was done vomiting compliments, Eddie very graciously thanked me and asked, “Who are you?� I unassumingly answered, “Lisa Genova. I wrote Still Alice.� And then, Eddie Redmayne gushed all over me. :-) PS. The next day, Eddie won Best Actor. #truestory #mindblown
Transfatty Lives
Patrick O’Brien (not Katie’s older brother in Inside the O’Briens) was DJ Transfatty and a filmmaker, 30 years old and living in NYC when he was diagnosed with ALS. He turned the camera on himself, making this extraordinary, darkly humorous, thought-provoking, and inspiring documentary about his journey. “What if my diminishing physical abilities can be inversely proportional to my journey inward? And, more importantly, will there be bacon and unicorns once I get there?� I met Patrick at the Leonard Florence Center for Living in Chelsea, MA where he now lives--unable to walk, talk, or breathe, his creative mind still alive and well, typing with his pupils.
Gleason
This documentary about former New Orleans Saints safety Steve Gleason stirred many big emotions in me. Shot with handheld cameras, this film gets up close and personal, yanking back the curtain, exposing an extremely intimate view of the realities of living with ALS. Both Steve and his wife Michel are amazing, beautiful human beings, determined to live and love with courage and purpose. While Steve is portrayed as a “no white flags� heroic public figure, and he is, I found Michel to be the real hero of their story. My heart broke hard and in many places for her, and I have wondered and worried about her often since seeing this film. Caregivers will definitely identify with her. With his eyes, Steve wrote, “I cannot move or talk or breathe on my own, but because of evolving eye-tracking technology, which I use in conjunction with a tablet, I can do anything an ordinary person can do: text, talk, play music, watch movies, conduct online meetings…� And he can do these things because Michel and other caregivers devote their time, energy, and love to washing, dressing, toileting, and feeding him.
It’s Not Yet Dark
I didn't see this film until after I finished the final draft of EVERY NOTE PLAYED. Narrated by Colin Farrell, IT'S NOT YET DARK reveals the story of Irish filmmaker Simon Fitzmaurice who was diagnosed with ALS at the age of 34. It’s an intimate portrayal of a young family hurled into the unthinkable and unexpected crisis of ALS. Simon’s steadfast and optimistic determination to live, to not give up on love or his dreams is inspiring and uplifting. Because ALS never happens to just one person, this is also the story of Simon’s wife, Ruth. As I watched her take care of him and their five young children, I kept wondering what she wanted, what her dreams were. We don’t see either of them ask or answer those questions. Arms, legs, breath, and voice paralyzed, Simon amazingly continues to live a productive and meaningful life, writing the book upon which this film is based and directing his first feature film through eye-gaze technology.
So Much, So Fast
This was the first documentary about ALS that I watched. An inspirational and heartbreaking story about architect/builder Stephen Heywood, diagnosed with ALS at age 29, and his brilliant brother Jamie, who became obsessively driven to find a cure. I fell in love with the Heywoods. I wanted to be part of their family and Jamie’s renegade quest.
Jamie founded ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company, a place I came to know well while writing EVERY NOTE PLAYED. I met with Jamie and Stephen’s other brother, Ben, in doing the research for my book. They shared the brutality and intimacy, the reality and the hope in loving someone with ALS. If, like me, you can’t get enough of these brothers, Jonathan Weiner pens their story in His Brother’s Keeper. Stephen died in 2006.
Imber’s Left Hand
I LOVED this documentary about artist Jon Imber. As ALS paralyzes his right hand, he learns to paint with his left, and then with both hands held together at his waist. He painted more than 100 portraits in 4 months like this. His determination to keep painting, to keep seeing, to keep loving and growing in the presence of crippling physical demise is awe-inspiring and heroic. His wife Jill said, “What you do at the end of your life is an interesting doorway.� Wow.
The Theory of Everything
I saw this movie about theoretical physicist Stephen Hawking about a week before the Golden Globes in 2015. I was mesmerized by Eddie Redmayne’s portrayal of Hawking with ALS, how he embodied the changes in physicality that accompany increasing paralysis with such authenticity and believability. A few days later and the night before the Golden Globes, I attended a swanky party for Still Alice in Beverly Hills. Before walking through the front door, I told myself to be cool. But the first person I met was Eddie, and cool laughed at me as it flew right out the window. I gushed all over him. I was horrified with myself as I was gushing but couldn’t stop myself. When I was done vomiting compliments, Eddie very graciously thanked me and asked, “Who are you?� I unassumingly answered, “Lisa Genova. I wrote Still Alice.� And then, Eddie Redmayne gushed all over me. :-) PS. The next day, Eddie won Best Actor. #truestory #mindblown
Transfatty Lives
Patrick O’Brien (not Katie’s older brother in Inside the O’Briens) was DJ Transfatty and a filmmaker, 30 years old and living in NYC when he was diagnosed with ALS. He turned the camera on himself, making this extraordinary, darkly humorous, thought-provoking, and inspiring documentary about his journey. “What if my diminishing physical abilities can be inversely proportional to my journey inward? And, more importantly, will there be bacon and unicorns once I get there?� I met Patrick at the Leonard Florence Center for Living in Chelsea, MA where he now lives--unable to walk, talk, or breathe, his creative mind still alive and well, typing with his pupils.
Gleason
This documentary about former New Orleans Saints safety Steve Gleason stirred many big emotions in me. Shot with handheld cameras, this film gets up close and personal, yanking back the curtain, exposing an extremely intimate view of the realities of living with ALS. Both Steve and his wife Michel are amazing, beautiful human beings, determined to live and love with courage and purpose. While Steve is portrayed as a “no white flags� heroic public figure, and he is, I found Michel to be the real hero of their story. My heart broke hard and in many places for her, and I have wondered and worried about her often since seeing this film. Caregivers will definitely identify with her. With his eyes, Steve wrote, “I cannot move or talk or breathe on my own, but because of evolving eye-tracking technology, which I use in conjunction with a tablet, I can do anything an ordinary person can do: text, talk, play music, watch movies, conduct online meetings…� And he can do these things because Michel and other caregivers devote their time, energy, and love to washing, dressing, toileting, and feeding him.
It’s Not Yet Dark
I didn't see this film until after I finished the final draft of EVERY NOTE PLAYED. Narrated by Colin Farrell, IT'S NOT YET DARK reveals the story of Irish filmmaker Simon Fitzmaurice who was diagnosed with ALS at the age of 34. It’s an intimate portrayal of a young family hurled into the unthinkable and unexpected crisis of ALS. Simon’s steadfast and optimistic determination to live, to not give up on love or his dreams is inspiring and uplifting. Because ALS never happens to just one person, this is also the story of Simon’s wife, Ruth. As I watched her take care of him and their five young children, I kept wondering what she wanted, what her dreams were. We don’t see either of them ask or answer those questions. Arms, legs, breath, and voice paralyzed, Simon amazingly continues to live a productive and meaningful life, writing the book upon which this film is based and directing his first feature film through eye-gaze technology.
From a cucumber to a cure
I met Arthur Cohen and his wife Janet at last year's Compassionate Care ALS gala in Boston. We sat next to each other and chatted throughout the night. I adored him immediately. He told me about being a photographer, seeing Hamilton, and his PickALS project to raise money for ALS--"From a cucumber to a cure." We kept in touch through FaceTime and email, Arthur typing with his eyeballs.
Here's an email from me to him after that gala:
Hi Arthur,
I just said the same thing--how lucky I am to meet and know the most wonderful people through my writing journeys. Spending time with you was the highlight of the gala for me. You have such an enormous, joyful, loving spirit--You are love, and it bursts beyond the boundaries of your body. Loved every second that I got to hang with you! And watching you and Janet--makes me happy teary as I type. I've never had that kind of love, Arthur (I'm still hopeful!). You both are so beautiful to watch.
Ron Hoffman (from CCALS) is an angel and a hero--I'm so grateful that you found each other.
And I love the PickALS! I'll spread the word on social media about them. You do the pickles, I'll write the book, and together we'll make a difference, right? And get to know and love and help people along the way....
XO,
Lisa
PS. If you get more tix to Hamilton, bring me! :)
-----
Arthur died in August 2017. This weekend, while signing books at the Annapolis Book Festival, a reader gave me a jar of PickALS. The reader was Arthur's sister. It was such a beautiful moment and unexpected gift. Here is a link to my favorite video of Arthur and more about PickALS;
Here's an email from me to him after that gala:
Hi Arthur,
I just said the same thing--how lucky I am to meet and know the most wonderful people through my writing journeys. Spending time with you was the highlight of the gala for me. You have such an enormous, joyful, loving spirit--You are love, and it bursts beyond the boundaries of your body. Loved every second that I got to hang with you! And watching you and Janet--makes me happy teary as I type. I've never had that kind of love, Arthur (I'm still hopeful!). You both are so beautiful to watch.
Ron Hoffman (from CCALS) is an angel and a hero--I'm so grateful that you found each other.
And I love the PickALS! I'll spread the word on social media about them. You do the pickles, I'll write the book, and together we'll make a difference, right? And get to know and love and help people along the way....
XO,
Lisa
PS. If you get more tix to Hamilton, bring me! :)
-----
Arthur died in August 2017. This weekend, while signing books at the Annapolis Book Festival, a reader gave me a jar of PickALS. The reader was Arthur's sister. It was such a beautiful moment and unexpected gift. Here is a link to my favorite video of Arthur and more about PickALS;
