Interview with Lisa Genova

March, 2018
Lisa Genova
Neuroscientist and author Lisa Genova has forged a singular path with her bestselling novels about conditions including Huntington's disease, autism, and, most notably, Alzheimer's, the focus of her 2007 debut, Still Alice, which took readers into the mind of a 50-year-old Harvard professor battling early-onset Alzheimer's.

Now the Cape Cod, Massachusetts-based Genova, who herself holds a Ph.D. in neuroscience from Harvard, turns her attention to the devastating degenerative disease ALS. In Every Note Played, her fifth novel, Richard Evans is an egotistical 45-year-old concert pianist whose joy and identity reside in his fingers. After he's diagnosed with ALS and starts to lose the use of his limbs, his ex-wife, Karina, becomes his reluctant caregiver. As the pair grapple with Richard's rapid decline, they must also face the toxic legacy of their failed marriage and try to find peace before it's too late.

With her signature attention to both the molecular and human aspects of disease, Genova takes us through the harrowing reality of ALS while simultaneously noting the "beautiful moments" that can accompany terminal illness. She tells Goodreads contributor Catherine Elsworth about her inspiration for the book, why she writes fiction, and what's next.


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Goodreads: In your acknowledgements, you say Every Note Played began with Richard Glatzer, the co-director of the film Still Alice, who had ALS and died in 2015, just after Julianne Moore won a Best Actress Oscar for her role in the film. Was he the inspiration for the book, or did you know you wanted to write about ALS before that?

Lisa Genova: He was absolutely the inspiration for the book. Like a lot of us, I hadn't known anyone personally with ALS. My familiarity with it was basically Stephen Hawking and then the ice bucket challenge, which I'd participated in. Of course, I knew the overview of the neuroscience of ALS, but I had no idea about the experience of it, what it feels like to live with ALS or to care for someone with ALS. So it was meeting Richard Glatzer and the experience of being on the set with him.

He and his husband [Wash Westmoreland] codirected the film, and Richard, even though he was silent from ALS—he had bulbar ALS, and his voice was the first thing that went—he wasn't quiet in his direction. He was typing with one finger on an iPad and was very insightful; when he had something to say, it was like "boom," precisely what was needed to adjust the scene perfectly. He was fully intact cognitively. After we were done filming, I asked him if it would be OK if I wrote about ALS next in his honor and he said, "Of course." So he was the first person [with ALS] I spent time with, and then we emailed a lot about his ALS because at that point he couldn't travel and he was typing with his big toe because his arms were paralyzed.

GR: You did a lot of additional research speaking to other sufferers, and in the acknowledgements you reveal a lot of them have since died. This must have been quite a devastating journey in many ways.

LG: Yes. It's interesting because I've written about fatal neuro-degenerative diseases before such as Alzheimer's and Huntington's. And yet with those diseases I wasn't confronted with death the way I was with ALS. In our culture, we don't like to look at the dying and death; it's become very medicalized. But ALS, unlike other diseases, gives you a front row seat to dying. Eight of the 12 people I became close to on this journey died before I finished the final draft. The speed of this disease is literally breathtaking.

It was hard to lose folks, hard to witness that kind of grief and loss. And it was also such a humbling privilege to get to know and love and honor someone in their last moments of life and to witness people leaving behind their loved ones in such a beautiful way. Not everyone was able to do this, but for some, they really got to take care of everything in terms of their relationships before they went. So while you don't want to romanticize or minimize the heartache, there are beautiful moments that can come along with the journey that people go through with this disease when they have the chance to really recognize how their lives are meaningful.

GR: How did you decide on the characters and plot for Every Note Played? Did it all come at once?

LG: No. I don't outline my books, and this is an exciting and somewhat terrifying way to write because I don't know necessarily what's going to happen and how it's going to fit together. I decided early on that I wanted the main characters to be concert pianists. Interestingly, when I was doing research, reading medical textbooks and memoirs and getting to know people who have ALS, I was struck early on by two main things. One is the massive fear around being totally paralyzed and unable to move any part of your body. Then I thought of all of the ways the rest of us who don't have ALS are paralyzed by fear or blame or excuses and don't live the life we want to. I thought the story might be around someone like Karina, who had decided she couldn't live the life she wanted to live and had all these reasons and excuses as to why she couldn't.

The second thing I was struck by was that the biggest fear people have with ALS is that while it's awful and terrible to not be able to walk or feed yourself, not being able to speak is the most terrifying thing for most folks. We rely so much on language. So I thought again, How many of us who are perfectly capable of saying anything we want, of repairing our relationships with "I'm sorry" or "I love you," just don't go there. So I thought it might be interesting to explore a relationship that had been ruined, full of blame and words unspoken, against this disease that is 100 percent fatal and see if there are other aspects of your human being that can be healed despite all of that.

I chose a divorced couple who had all this unfinished business—I've been divorced twice, so I had some personal material to draw from. I can't remember exactly how I decided they should be pianists, but I wanted someone whose identity resided in his physicality. Like Alice in Still Alice, her identity resided in her ability to think as a professor and then she gets Alzheimer's and can't be that, so Richard in Every Note Played, if he can no longer play the piano, this thing where all his passion and purpose have been funneled, then who is he now? It's a crisis of identity.


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GR: In the book you show us some really intimate details about life for both patient and caregiver and how this relationship transforms them.

LG: To care for someone with ALS, or if you're Richard with ALS, it is very intimate. I wanted to portray the experience with dignity and respect, yet I felt that to not portray those delicate, somewhat embarrassing, not necessarily polite moments would have been avoiding the truth.

Also, in any story I'm writing, I'm always looking at how people are changed by what happens. So the story was about how would Karina change because of this and how would Richard change because of this before he dies? And there is literally a ticking clock—will they be able to do this before he goes?

GR: Another interesting thing is at the beginning of the book neither Richard nor Karina is particularly likable; we're very critical of both of them, their choices, their stubbornness.

LG: I was nervous about that. My agent and my editor read the first couple of chapters early on, and they were both like, "Brava for choosing that, and we're crossing our fingers and hope you pull it off!" Because we have to be able to sympathize with someone dying from ALS, and if he's so horrible, it won't work.

It's funny—I'm not interested in writing about perfect people. We're all flawed despite the best of intentions. I think that for Richard, if the ALS crisis hadn't happened to him, then he would have continued on a very lonely path. So this chance at reconciliation was very important for both of them. ALS was the disruption that allowed the two of them to find some peace with what had happened and who they were.

GR: It must be an intimidating role as both a neuroscientist and an author in that, even though you're writing fiction, your readers must look to you as a kind of guide to, or expert on, this disease. Does that responsibility weigh on you?

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LG: I take it very seriously. I feel a massive responsibility. I don't think there are any other neuroscientist-novelists out there, and I know that at this point I'm so honored that my books are also used as educational resources for nursing students, medical students, and occupational therapy students. So I feel enormous responsibility to do my homework.

In addition to reading the medical textbooks and the scientific research papers, I shadow neurologists, I go to the ALS clinic and sit in with the patients. I'm regularly in touch with the chief of neurology at Mass General, who is the head of the ALS Clinic. In fact, I asked her to read the entire first draft for accuracy.

The dialogue is particularly important, as I am in some ways presenting an opinion with the choices Richard makes. I wanted readers to bear witness to the kind of choices sufferers face.

GR: Reader Lynda asks, "Each time I read one of Lisa Genova's books I have the same question: How does she manage to write about serious, often very depressing subject matter, yet when I read her books, I do not find them depressing?"

LG: There's definitely a conscious awareness around that for me in writing because my goal is to reveal the human experience, the humanity behind these illnesses that people tend to either ignore, fear, or misunderstand. People aren't going to go and read the journal of neuroscience to learn about ALS, and they might not read a nonfiction book about it because that, again, could be too heavy and grim. I want to engage readers in a way that they want to finish the story and come away familiar with something that was unfamiliar to them. People with these diseases tend to be excluded from community, but once we're familiar with something, it dissolves those barriers.

I'm also always trying to tell the truth under the imagined circumstances; I don't want to sugarcoat or gloss over the tragic and the grim. But I also regularly witness the beauty. While it's fiction, I'm drawing from experience that's real. I am in those bedrooms and living rooms and nursing homes with people with ALS, and it is not always doom and gloom and dying every moment. People are often living right up until their last breath.

I'm always looking for, While a disease like this can't be cured, where are the pinholes of hope? Where can the light get in the darkness? We're looking for the triumph of the human spirit, and I witness that over and over again. While I cried a lot in the journey of writing this book and I lost some really good friends and beautiful human beings, I feel really lucky to have known them.

GR: What got you interested in neuroscience in the first place?

LG: I'd always been interested in biology and how our bodies work, but when I got to college, I took a course on physiological psychology, which is basically the biology of the brain, and I was blown away. At the same time, I happened to read The Man Who Mistook His Wife for a Hat by the neurologist Oliver Sacks. It's a series of fascinating case studies of people with wacky and weird neurological diseases and disorders. And it wasn't just a clinical textbook. He really brought the humanity to these diseases. These were stories about how the brain can go wrong but also how people manage, cope, and walk through the world with that. That was equally as fascinating to me, so I think I've always been equally fascinated by the molecular and the behavioral.

GR: And then how did you start writing fiction?

LG: It was definitely not a plan. When my grandmother was diagnosed with Alzheimer's in her 80s, I was in my late 20s. I was very close with my grandmother, and I was also a neuroscientist, so I figured I'd learn as much as I could about Alzheimer's and that would help me and my family stay connected to her.

But while learning about the molecular biology of Alzheimer's was fun for the neuroscientist in me, the granddaughter in me was still stranded not understanding how to be with her when she didn't know who I was. I really didn't know how to handle that, and I wasn't able to find anything in the literature that could help me get to empathy or feel with her. At the time, there were no books written from the perspective of someone with Alzheimer's. They were all written from the point of view of an outsider looking in—the clinician, the scientist, the caregiver, the social worker. I thought, Well, that's the perspective that's missing, so what if I could write a story about a woman with Alzheimer's and tell it from her perspective?

But I didn't because I didn't know how to write. I wasn't a writer. I was working as a strategy consultant for biotech and pharmaceutical companies at the time. The reason I wrote the book is that in 2004, I was separated and then divorced. I was heartbroken and terrified not knowing what my future was going to look like. I was an unemployed single mom, and the rational, sane, reasonable choice would have been to go back to work. Instead I was so scared about what my life was going to look like, I said, "Well, if I could do anything I wanted to do, what would that be?" and the answer was "try to write that novel."

I did a very unreasonable thing and gave myself the time to write Still Alice, and here we go. It was interesting, too, because I didn't know anything about making a career as a writer. I didn't know how hard it is to finish a book or to get a book published. All I knew is that it was a big undertaking, and I had a Ph.D. in neuroscience and that had meant working alone for many years. But I'm lucky in some ways that I didn't know how hard it was because that complete naïveté kept me from being overwhelmed and intimidated.

GR: Was that partly why you didn't give up and self-published Still Alice after it was rejected by literary agents?

LG: I had some colleagues and friends and family read the book who I know would have told me it was garbage if it was garbage. But everyone liked it. So while all my query letters ended up in dead ends, I thought, Well, these literary agents rejected the query letter, they didn't read the book, so maybe it still has a chance?

Although self-publishing is kind of acceptable now, it was avant-garde back then and still carried tons of stigma—I get why. But I also looked to the musicians who had no problem forgoing the Columbia record deal to put out their own album or the filmmakers who put out their own films. So I thought, Why not? Again, it was a little bit of naïveté; I didn't know any better, I just wanted to give the book a shot. So I gave myself a year, and if it didn't work, I was going to go back to neuroscience. But it accumulated enough word of mouth that I was led to an agent, and two months shy of my deadline, the book landed with Simon & Schuster.

GR: What was the experience of making the film of Still Alice like?

LG: I am so grateful to the actors in this film. It was a very low-budget film and they weren't paid very much, but they really gave their best selves to this. I think it was Kristin Stewart who said it best. She said it was a risk to be in this film because if it wasn't done well, it could be really awkward to watch. But if it was done well, the film had the chance to be important, so she wanted to take the chance and be a part of that.

Richard [Glatzer] was there with ALS for 12 hours a day, putting in everything he's got, so again that was inspiring for everyone. The whole thing was trippy; it was beautiful and surreal, and it was a wonderful opportunity to go beyond the book in terms of dragging Alzheimer's out of the closet and into a conversation. Because, again, this disease has so much stigma and taboo attached to it. Nobody wants to talk about Alzheimer's, and yet how are we going to cure something if we don't have a sense of urgency and public demand to do something about it? So the movie really helped facilitate a global conversation about Alzheimer's.

GR: Reader Christine asks, "Do you write every day? Describe a typical writing day in the life of Lisa Genova."

LG: When I begin a book, I usually front-load with about four to six months of research. Then once I start writing, I write every day. I typically write in the morning, and I begin with a notebook and a pen. I feel more free to allow it to be imperfect with a pen. Sometimes it's almost like a diary. I'll write, "I have no idea what happens next" and then I'll write a note to myself—"don't freak out, don't panic, you'll find it!" So a lot of times it's a pep talk, too, but after three pages of handwritten stream of consciousness, I've always found my way into the story, and then I switch over to the laptop.

I write at Starbucks because there's just too much distraction at home. So I go there and stay in the seat and I commit to writing, and I allow myself to get the words down, however horrible. So I typically write for about four hours every day once I start a book and try to do about 1,500 words a day.

GR: Who are your favorite authors, or what are some great books you've read recently?

LG: I read a lot of nonfiction, more nonfiction than fiction, but right now I'm reading Little Fires Everywhere by Celeste Ng. I'm loving it and am so blown away by Celeste's writing and choices I've never seen anybody make. If people are interested in the geeky neuroscience stuff, David Eagleman wrote a book called Incognito: The Secret Lives of the Brain, which I think is a really cool layman's neuroscience book about how our brains do trippy, neat things; he's really interesting.

I read all the time. I'm always reading two, three, four books at once, so right now I'm also reading Tim Ferriss' Tribe of Mentors, which is great inspirational reading. I tend to always have some inspirational, self-improvement book going. I love Gabrielle Bernstein. I'm always trying to read a novel and then another book that's probably more science or medical or psychology.

GR: Reader Anna asks, "If you were not writing about debilitating illness, what other theme would you like to try, and why?"

LG: I've been asked this before, and I really don't have a desire to leave what I do. Here's the thing: I don't know if there's another neuroscientist-novelist out there, and so this is the unique thing that I get to do, and I love it. I feel a sense of responsibility as well. It's so rewarding, and I feel so lucky to live now with the connectivity we have that I can be aware of how my books have impacted people's lives and appreciate how it has helped people.

I always say, With my nana, I wish I had understood then what I know now, and I can see that my book has helped give people what I didn't have with my nana. So while I'm sure I'm capable of another kind of story, I want to stick to this. I love neuroscience, and it's an opportunity to help people who are ignored, feared, and misunderstood be seen and heard in a human way. And there are so many mental illnesses and neurological diseases where people are in the darkness, in the shadows. I feel like I am in some ways uniquely positioned to tell their stories. So, for example, I want to write about bipolar disorder next. And every time I mention that to someone, they usually say, "Oh yes, I know someone who struggles with that, and it is in the shadows, people are ashamed of it." So I don't think there's a shortage.

GR: Is that what you're working on at the moment?

LG: I'm not quite there yet. Firstly, I'm gearing up to support Every Note Played and help it reach as many people as possible. But, also, before I turn my attention to that, I'm writing a nonfiction book about memory. I've been talking about Alzheimer's and dementia and the way our memory works and doesn't work to audiences for about ten years now [Genova's 2017 TED talk What you can do to prevent Alzheimer's has been viewed 2.6 million times]. There's a lot of confusion and a lot of interest in how memory works and how it fails, why we forget, and how can we improve our memories. Is this normal forgetting or is this forgetting due to Alzheimer's? I'd like to give people some easy-to-understand insight as to what we know about how memory works.

Comments Showing 1-32 of 32 (32 new)

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message 1: by Patricia (new)

Patricia Ferguson I have read all your books except the newest one and have learned a lot from each one. My newest strongest interest is Alzheimer's since I was told I have APOE4 gene variant when I took a 23andMe DNA test several years ago before the FDA stopped them from doing the health segment of the test. My sister also has that gene variant and we both have only about a 12.5% chance of developing the disease. I have volunteered for a clinical trial of a drug called JNJ-54861911 and am taking either placebo, 5 mg, or 25 mg per day. Blind study, of course. I was diagnosed as having amyloid in my brain by PET scan. Have been taking meds since January 8, 2018, so no results yet. Also just finished "Aging with Grace" to which you referred in your talk at TED and have procured another copy of "Still Alice" to reread it. Just thought I would let you know that you have a novice advocate out here who is supporting Alzheimer's research the best way she knows how and is genuinely interested in preventing the progression of the disease. My main downfalls are a sedentary lifestyle and poor sleep hygiene. Need work on both of them as well as better control of blood glucose (yes, I have diabetes too). Thank you for enlightening us about these diseases.


message 2: by Dana (new)

Dana MOORE My husband died of ALS four years ago. This was so well written relative to the disease and the care giving aspect, as he stayed at home, we cared for him at home and he died at home. Thank you. DM


message 3: by Carol (new)

Carol You are a wonderful writer and I have enjoyed each of your books about neurological disorders or diseases. I am a retired nurse and always medically interested. I have personal family-in-law experience with Huntington's as well as clinical and have had experience with all but the left neglected disorder. I read a lot of fiction and am so thankful to see that readers are getting true facts about these problems. Thank you so much.
I have two more topics of interest to suggest. The first that was "new to me" is transient global amnesia. I was recently in a group where two of the 15 had experienced this. I know you could handle this quite well. The other is the problem of adult ADD and dealing with it psychologically and medically. Keep writing and I look forward to each of your books.


message 4: by Kinser (new)

Kinser I love all of your books, Lisa. Especially Inside the O'Brien's, as you know why. Can't wait for the movie and hope to hear more about it soon! Waiting for Every Note Played .... I always say that each book is better than the last. Can't wait!
Would love, some day, to be able to write . Such a gift.
Thank you, Lisa!


message 5: by Lisa (new)

Lisa Patricia wrote: "I have read all your books except the newest one and have learned a lot from each one. My newest strongest interest is Alzheimer's since I was told I have APOE4 gene variant when I took a 23andMe D..."

Patricia!! You're in the A5 study. You are a hero! Seriously. In order for us to see a prevention or cure for Alzheimer's, we need amazing people like you to give your time, courage, and hope to these kinds of studies. BRAVA! And you're right, with APOE4, you may never get Alzheimer's. But to better your odds, get movin'! Sleep more. Take care of you as if you're the best, most favorite thing you own. Cuz it is!

Have you read The Inheritance by Niki Kapsambelis? It follows the DeMoe family who has the inherited form of early onset. Forget Marvel comics--this family is made of real heroes.

Thank you for reading my books! I hope you love Every Note Played. I hope it does for ALS what Still Alice has done for Alzheimer's. And thank you again for being part of the progress that will lead to the end of Alzheimer's! You're amazing!

xo,
Lisa


message 6: by Lisa (new)

Lisa Dana wrote: "My husband died of ALS four years ago. This was so well written relative to the disease and the care giving aspect, as he stayed at home, we cared for him at home and he died at home. Thank you. DM"

Dana,

I'm so sorry you lost your husband to ALS. Thank you for having the courage to read Every Note Played. I hope this book generates an awareness that goes beyond the ice buckets...

xo,
Lisa


message 7: by Kalin (last edited Mar 06, 2018 01:57PM) (new)

Kalin Thank you, Lisa, Catherine, Lynda, Christine and Anna, for the insightful interview. I have not read any of Lisa's books yet, but being bipolar (and a fellow writer, who sometimes tries to capture the terrors and beauties of the bipolar condition), I'll definitely be looking forward to her next novel.


message 8: by Lisa (new)

Lisa Carol wrote: "You are a wonderful writer and I have enjoyed each of your books about neurological disorders or diseases. I am a retired nurse and always medically interested. I have personal family-in-law experi..."

Hi Carol,

Thank you so much. And thank you for all you've done in your life as a nurse, for caring for people at their most vulnerable. Yes, I take my homework seriously here. These books are fiction, but the medical information is accurate. I want readers to be able to use my novels as resources--whether they be physicians, nurses, OTs, psychology students, patients, caregivers.

Transient global amnesia is the first condition I ever studied back in my undergraduate days! It's on my list. And I touched on ADD in Left Neglected, but only in Charlie the son, not adult.

Thank you and hope you love Every Note Played!
xo,
Lisa


message 9: by Lisa (new)

Lisa Kinser wrote: "I love all of your books, Lisa. Especially Inside the O'Brien's, as you know why. Can't wait for the movie and hope to hear more about it soon! Waiting for Every Note Played .... I always say that ..."

Thank you, Kinser. Inside the O'Brien's is so special to me, too. The families. I was in touch with the producer for the movie today--no news that we can share yet. It was like this with Still Alice. Nothing happened for what seemed like forever, and then BAM--it was a freight train from day one of shooting straight to the Oscars!

xo,
Lisa


message 10: by Donna (new)

Donna Muldoon I love your writing, Lisa. Caregivers of loved ones with neurological diseases grieve and cope in different ways. As caregiver to my mom, I regroup by reading and hope to gain courage to write one day too. You can add social worker to your list of titles as you help so many. Thank you!


message 11: by Elissa (new)

Elissa L. I look forward to reading your new book and thank you for all the books you've written. I have enjoyed every one!


message 12: by Nancy (new)

Nancy My mother and aunt both died from myotonic dystrophy which I always describe as the slower moving version of ALS. I have not read your book, but I would like to. There are not too many books with the characters having ALS. It's always difficult for me to read about ALS sufferers. I'm always in tears and my heart breaks.


message 13: by Sweet (new)

Sweet Pea I was hesitant to read "Still Alice" because I thought it'd be depressing. But after reading your interview and these comments, I look forward to it now and this new book as well. I've been reading "The End of Alzheimer's" by Dale E. Bredesen, MD and he offers the first program to prevent and reverse cognitive decline. It's very interesting and gives hope. Curious if you've read it and what you think of it.


message 14: by Joelle (new)

Joelle I am a huge fan of your books! I was happy to read that you are planning a book on bipolar disorder. I was diagnosed 20 yrs ago and after much trial and error, have been stable for more than half of that. Sadly, my daughter has just been diagnosed with the same. I'm looking forward to that book which will explain bipolar disorder to a wide audience, as your other books have done. I've keep my diaries of my illness for 20 yrs now. I'm glad you are bringing them to life.


message 15: by Dle (new)

Dle Dear Lisa.
I’ve read all of your books and always eagerly await your next.

My husband, a Harvard Law School Graduate, died recently of pancreatic cancer. It was three months from his diagnosis to his death with no early warning signs that he was ill. It is an aggressive, cancer that shows no mercy to the individual with the diagnosis or their loved ones who are rendered helpless.

Perhaps it will be a disease you will explore and write about one day and I hope I will be around to read it. Best to you always.


message 16: by Gene K. (new)

Gene K. Garrison I am a narrative non-fiction writer who avoids reading fiction because I usually forget it promptly after I finish reading it. Not so with "Still Alice." I read it years ago but still remember it. It touched me deeply.

Gene K. Garrison


message 17: by Donné (new)

Donné Black All I can say is that I love all your books Lisa! I am a huge fan and cannot wait to read the next one. Thank you for all your books and the wonderful way you write! Thank you thank you thank you!


message 18: by Lisa (new)

Lisa Donné wrote: "All I can say is that I love all your books Lisa! I am a huge fan and cannot wait to read the next one. Thank you for all your books and the wonderful way you write! Thank you thank you thank you!"

Thank you so much, Donne! I hope you love Every Note Played!
xo,
Lisa


message 19: by Lisa (new)

Lisa Gene K. wrote: "I am a narrative non-fiction writer who avoids reading fiction because I usually forget it promptly after I finish reading it. Not so with "Still Alice." I read it years ago but still remember it. ..."

Thank you, Gene. This is a high compliment. All best with your writing!
xo,
Lisa


message 20: by Lisa (new)

Lisa Dle wrote: "Dear Lisa.
I’ve read all of your books and always eagerly await your next.

My husband, a Harvard Law School Graduate, died recently of pancreatic cancer. It was three months from his diagnosis to ..."


I'm so sorry for the loss of your husband to pancreatic cancer. That is stunningly fast. While I write about diseases and disorders that affect the brain, I hope we're both around to see a cure for cancer.

My love to you and your family,
Lisa


message 21: by Lisa (new)

Lisa Joelle wrote: "I am a huge fan of your books! I was happy to read that you are planning a book on bipolar disorder. I was diagnosed 20 yrs ago and after much trial and error, have been stable for more than half o..."

Hi Joelle!

I'm so encouraged to read that you've found stability inside this disorder--I don't know much about bipolar yet, as I haven't begun researching it yet. But from what little I know, most people struggle for way too long trying to achieve stability. Hopefully, you'll be able to guide your daughter with what you've learned--what we all hope to do for our kids. Thanks so much for sharing here.

My love to you and your family,
Lisa


message 22: by Lisa (new)

Lisa Sweet wrote: "I was hesitant to read "Still Alice" because I thought it'd be depressing. But after reading your interview and these comments, I look forward to it now and this new book as well. I've been reading..."

Thanks for giving Still Alice and Every Note Played a chance. I haven't read The End of Alzheimer's, so I can't weigh in on it. But I talk about ways to prevent Alzheimer's in my TED talk: https://www.ted.com/talks/lisa_genova...

Thanks and all best,
Lisa


message 23: by Dle (new)

Dle Lisa wrote: "Dle wrote: "Dear Lisa.
I’ve read all of your books and always eagerly await your next.

My husband, a Harvard Law School Graduate, died recently of pancreatic cancer. It was three months from his d..."


Lisa wrote: "Dle wrote: "Dear Lisa.
I’ve read all of your books and always eagerly await your next.

My husband, a Harvard Law School Graduate, died recently of pancreatic cancer. It was three months from his d..."


Lisa wrote: "Dle wrote: "Dear Lisa.
I’ve read all of your books and always eagerly await your next.

My husband, a Harvard Law School Graduate, died recently of pancreatic cancer. It was three months from his d..."


Lisa wrote: "Dle wrote: "Dear Lisa.
I’ve read all of your books and always eagerly await your next.

My husband, a Harvard Law School Graduate, died recently of pancreatic cancer. It was three months from his d..."


Lisa,
Thank you for your kind words. I look forward to your book on bipolar disorder. I am the Education and Outreach Director of our local National Alliance on Mental Illness (NAMI). Every day I am touched by an individual , family member or friend diagnosed with bipolar disorder. I am also on the Board of Visitors of a Psychiatric hospital and a liaison to mental health court. There will be much you will learn as you research this disorder. I wish you well with many blessings on your journey.
My love to you for all you do
Dle


message 24: by Lisa (new)

Lisa Dle wrote: "Lisa wrote: "Dle wrote: "Dear Lisa.
I’ve read all of your books and always eagerly await your next.

My husband, a Harvard Law School Graduate, died recently of pancreatic cancer. It was three mont..."


Thank you, Dle, for all that you do to help others and for this lovely note. Yes, I look forward to learning with every book I write--both about the disease/condition and about how to live and love better.

xo,
Lisa


message 25: by Lisa (new)

Lisa Kalin wrote: "Thank you, Lisa, Catherine, Lynda, Christine and Anna, for the insightful interview. I have not read any of Lisa's books yet, but being bipolar (and a fellow writer, who sometimes tries to capture ..."

XO and best wishes with your writing!


message 26: by Lisa (new)

Lisa Donna wrote: "I love your writing, Lisa. Caregivers of loved ones with neurological diseases grieve and cope in different ways. As caregiver to my mom, I regroup by reading and hope to gain courage to write one ..."

Thank you so much, Donna. I'm honored that you think of me that way. Social workers are beautiful souls.

Caregiving is can be rewarding, draining, meaningful, exhausting, loving, isolating. It can lead to depression, chronic fatigue, PTSD. I think everyone goes through the stages of grief. And, it can be profoundly connected and intimate. I think the journey is different for everyone.

If you want to try writing, I recommend Julia Cameron's The Artist's Way and The Sound of Paper; Stephen King's On Writing; Natalie Goldberg's Writing Down the Bones; Anne Lamott's Bird by Bird.

My love to you and your family,
Lisa


message 27: by Lisa (new)

Lisa Elissa wrote: "I look forward to reading your new book and thank you for all the books you've written. I have enjoyed every one!"

Thank you so much, Elissa! XO


message 28: by Mary (new)

Mary Ranganathan My mother was diagnosed with ALS in May 2014. Her doctor put her on riluzole, letting her know there was no cure but the medication might provide her a few more months of delayed symptoms. ALS progresses at different rates and affects different body parts first. My mother, being 80 at the time, fell into a category of what they call "fast progression" (older female). Her arms weakened first, then her hands, her mouth, and throat, and finally her lungs. Throughout her two-and-a-half-year ordeal, she was able to walk with assistance. All the while she continued to take the riluzole. If it bought my mother any time, we will never know. Her neurologist told us that if she couldn't afford it, there was no real need to take it. She lost touch with reality. Suspecting it was the medication I took her off the riluzole (with the doctor’s knowledge) and started her on the ALS natural herbal formula we ordered from GREEN HOUSE HERBAL CLINIC, We spoke to few people who used the treatment here in Canada and they all gave a positive response, her symptoms totally declined over a 7 weeks use of the Green House ALS disease natural herbal formula. She is now almost 83 and doing very well, the disease is totally reversed! (Visit their website www . Greenhouseherbalclinic . com) I am thankful to nature, herbs are truly gift from God. I will keep sharing more awareness, Share with friends!!


message 29: by Sheryl (new)

Sheryl I have loved all of your books and am so excited to read your new book. Many on my TBR list will have to step aside for me to read yours sooner. I really enjoyed Left Neglected. At the beginning I was googling left neglect to see if it was real. You have a great way of teaching. My mom's close cousin recently died from Parkinson's. I'd like to understand it better and hope you will consider that for a future book. But whatever you choose, I'll be reading it.


message 30: by Ruby (new)

Ruby Schuberg I've had a front row seat to the devastation of ALS as a caregiver to my husband who died 5 years after the initial diagnosis. He couldn't live the life we had envisioned, but he experienced family joys accepting the moment and not projecting the future. I've read all of your books and appreciate the way you bring the hardships and family dynamics to these struggles. Thank you for keeping the general public informed and aware.


message 31: by Tina (new)

Tina O'reilly Still Alice is my favourite all time book. I was entranced by it from the very beginning, so well written and revealing. Before then I had never considered anything but as disease of the elderly. I loved that it was written from the sufferers perspective, quite different, perhaps a gamble of an idea to do that. Love to hear of another book by Lisa Genova - can't wait to get to read it soon.


message 32: by Barbara (new)

Barbara I have read every book you have written with the eye of both a psychotherapist and a person with bipolar disorder. I am thrilled that your next book will tackle an illness that I have battled for 22 years. The lack of understanding and the stigma surrounding mental illness is difficult to deal with. My husband has Parkinson’. Did you ever consider a book about that?


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