Lisa Genova's Blog - Posts Tagged "every-note-played"
The Oscars
It's Oscars season. I love movies and try to catch as many of the Oscar-nominated films as I can before the Academy Awards. So far, I've seen Lady Bird, Three Billboards Ouside of Ebbing, and The Post (all great, but my vote goes easily to Three Billboards). And I can't help but get a bit nostalgic now, thinking back to Oscars night three years ago. I still smile as I remember clutching onto producer and dear friend James Brown, holding our breaths, waiting for Matthew McConaughy to open that envelope and then hugging, laughing, and crying after he read, "Julianne Moore for Still Alice." I think I almost passed out when Julianne Moore included thanking me in her acceptance speech. It was magical, surreal, thrilling, beyond compare.
As I get ready for the release of EVERY NOTE PLAYED next month, I've been going through my emails with Richard Glatzer, the co-writer/director of STILL ALICE who had ALS. Unfortunately, he was in the hospital the night Julianne won her golden trophy. Even though he wasn't able to be in the theatre with us, I'm so grateful he was still here to see that happen, to have that moment, to know what he--and all of us together--helped make happen.
Here's an email I sent the morning of the Academy Awards, Feb 22, 2015 to Julianne Moore, directors Richard Glatzer and Wash Westmoreland, producers James Brown, Lex Lutzus, Elizabeth Gelfand Stearns, and Pam Koffler:
On 22 Feb 2015 08:03, "Lisa Genova" wrote:
GOOD LUCK today! Was thinking last night--if we were all born 100 years ago, none of this would've happened. We are all HERE, NOW. I hope you all enjoy every moment of today, of being here now. SO amazing!
I've been getting an overwhelming number of beautiful notes from people all over the world about your film--too many to send. But this one, from a lovely woman named Beth, came in today, and I thought you might all love to see it.
My love and gratitude to you all! xoxo
Here's the note:
Just came home from seeing Still Alice. For me, this was very close to home. From seeing the familiar face of Lisa Genova in the theater scene, to my mother having the same pillowcases that were at the beach house, to the improving relationship between mother and daughter.
Then the speech - the game changer - for all to hear. That people with AD still have feelings and are able to love and cherish their lives. It was poignant, understandable and relatable.
With my husband seated by my side, I hoped he was taking it all in. Just in case. After all, we have a strong family incidence.
Then, when she found the butterfly video, she was functionally happy, communicating with her daughter, etc., living life. I loved the line in the yogurt shop, "I'm not done yet, do we have to go?" I live that question every day with my mother.
I saw the faithful daughter come home just as I have done - a savior masked in a daughter's willingness. I used to read my writing to my mom just as she did. It felt safe sharing with her. "Nothing is lost." My time with momma has been an investment. The payoff is love.
At some point I reached behind me to the next row and took the hand of a friend who had moved home to care for her mom. For six years. We share a common bond. Just how Lisa Genova reached out her hand to embrace all of us by opening the door of awareness by writing the book. By the way the film was produced to touch each one of us.
This movie will make a huge difference for understanding life with dementia. And hopefully, change the perception of people with dementia. Go see it.
As I get ready for the release of EVERY NOTE PLAYED next month, I've been going through my emails with Richard Glatzer, the co-writer/director of STILL ALICE who had ALS. Unfortunately, he was in the hospital the night Julianne won her golden trophy. Even though he wasn't able to be in the theatre with us, I'm so grateful he was still here to see that happen, to have that moment, to know what he--and all of us together--helped make happen.
Here's an email I sent the morning of the Academy Awards, Feb 22, 2015 to Julianne Moore, directors Richard Glatzer and Wash Westmoreland, producers James Brown, Lex Lutzus, Elizabeth Gelfand Stearns, and Pam Koffler:
On 22 Feb 2015 08:03, "Lisa Genova" wrote:
GOOD LUCK today! Was thinking last night--if we were all born 100 years ago, none of this would've happened. We are all HERE, NOW. I hope you all enjoy every moment of today, of being here now. SO amazing!
I've been getting an overwhelming number of beautiful notes from people all over the world about your film--too many to send. But this one, from a lovely woman named Beth, came in today, and I thought you might all love to see it.
My love and gratitude to you all! xoxo
Here's the note:
Just came home from seeing Still Alice. For me, this was very close to home. From seeing the familiar face of Lisa Genova in the theater scene, to my mother having the same pillowcases that were at the beach house, to the improving relationship between mother and daughter.
Then the speech - the game changer - for all to hear. That people with AD still have feelings and are able to love and cherish their lives. It was poignant, understandable and relatable.
With my husband seated by my side, I hoped he was taking it all in. Just in case. After all, we have a strong family incidence.
Then, when she found the butterfly video, she was functionally happy, communicating with her daughter, etc., living life. I loved the line in the yogurt shop, "I'm not done yet, do we have to go?" I live that question every day with my mother.
I saw the faithful daughter come home just as I have done - a savior masked in a daughter's willingness. I used to read my writing to my mom just as she did. It felt safe sharing with her. "Nothing is lost." My time with momma has been an investment. The payoff is love.
At some point I reached behind me to the next row and took the hand of a friend who had moved home to care for her mom. For six years. We share a common bond. Just how Lisa Genova reached out her hand to embrace all of us by opening the door of awareness by writing the book. By the way the film was produced to touch each one of us.
This movie will make a huge difference for understanding life with dementia. And hopefully, change the perception of people with dementia. Go see it.
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.
