Ask Lisa Genova! discussion
Welcome!
I am a member of a wltham book club and we are meeting to discuss left neglected next monday. Did you base story on actual person?
I'm reading Left Neglected currently and enjoying it. Wondering how common this disability is and why you chose it?
Marsha wrote: "I'm reading Left Neglected currently and enjoying it. Wondering how common this disability is and why you chose it?"Hey Marsha:
Brain injury is considered the "invisible illness" people are sometime mistaken for drunk, stupid, or slow...when really it is a head injury that is causing the problem. These people are NOT slow, and are NOT dumb, as a brain injury causes the connections in your brain to be severed or twisted. As a result, the individual must form new pathways to get to the same information, which obviously takes longer. Think of everything in your brain as a filing cabinet, when you have a head injury, the files are all dumped out and shaken around, it's now harder for you to find all the information.
As someone who works with people to rehabilitate after car accidents, is that Lisa Genova didn't protray how much cognitive difficulties persist, it felt like it was the physical that really only lasted for her, which isn't completely accurate. Many of my clients require YEARS of therapy to get cognition working well, and most don't return to their pre-accident cognition levels.
Hope this helps answer your question a little.
As for numbers, think of all the accidents you have seen, even a small "fender-bender" can cause head injury.
Hi Lisa, I read Still Alice for my bookclub and thoroughly enjoyed it, so when Left Neglected came out, I read it pretty much straight away. I enjoyed it very much, and was/am fascinated at how you write about such indepth topics. They must be hard to research, as the brain injury in Left Neglected doesn't appear to be very common? Have you any idea about your next book, and the topic you will choose for it yet?
Lisa, Kerri T. here, from Denver. So glad to have a chance to say hello, and tell you how i loved this book... When you were at Tattered Cover, someone asked why pts rarely if ever have Right Neglect... your answer made so much sense - ( i am a critical care nurse), but i couldn't "translate" it well to my fellow neuro-nurses... Would you please explain it again?
Thank you again, as well for Still Alice. As my Dad has Alzheimer's, it is my "go to" book for people who need an understanding of the process for patient and their families. Both books, to me, are fabulous. Thank you.
kt
Lisa,Illness is becoming more common as an important element of contemporary literature, Still Alice and Left Neglected being among them. The arts are the only place where certain important issues about illness can be explored. You explore the family debate around moving Alice to NYC in Still Alice, Lionel Shriver in So Much For That explores the family debate around whether it makes sense to spend money the family doesn't have on last ditch, futile treatments, Walter Mosley explores the trade off of a few lucid days before death or a longer life in dementia in The Last Days of Ptolemy Grey. These are important discussions because the depict real situations people face and cannot get insights on from Biomedicine or from the political sphere lest people be labeled death panel members. Do you see a role for literature in helping people imagine different ways of dealing with their illness experiences, and are you consciously attempting to do that in your novels?
Hi, I read Still Alice, and loved it and posted my thoughts on my blog if you are interested, at http://susansliterarycafe.blogspot.com. I also enjoyed reading Left Neglected, and was a lucky reader to recieve it from the publisher. What I loved from both books, was how Ms. Genova made Alice a Psychology professor, with someone with Alzheimer's Disease. Also, she linked in Left Neglected, with Sara's hectic life, and her son's hyperactivity in the beginning of the story. Toward the end, her son was able to better cope with the behaviors, and Sara's life slowed down, I thought the contrast was interesting in the book. I can't wait for her next one, and I understand she is writing it as we speak.
Hi Lisa, I just finished Just Alice, saw in the back that you wrote Left Neglected and found this discussion, all in a week!I want to thank you. I'm helping take care of my best friend who has senile dementia, and it helped me understand what she's going through. SHE asked to read it, and as a result, she "came out". She called all friends and relatives. It was hard for her, but not being in denial will help all of us make the preparations that have to be made.
sally
PS: I too love Oliver Sachs. An amazing man with an amazing mind and a love for neurology that is quite catchy.
Lisa wrote: "Hi Everyone!So looking forward to chatting with you about LEFT NEGLECTED. Feel free to post questions and get involved in the conversation.
See you here soon!
Lisa Genova"
Lisa, It is both an honor and a pleasure to meet you through this group discussion of your new book. I bought a copy of it just the other day, after finishing Still Alice. I will be reading it soon. As for Still Alice, it was incredible. My father died of Alzheimers just two years ago. I followed Alice,as I did my Dad, from the time they both realized they were losing their memories, through the fist time they both missed the bathroom, forgeting where it was, to forgeting family names, and onward to the end. Thank you for obviously putting your heart and soul into writing this. My heart and soul were right there with you as I read along.
I loved "Still Alice." I actually was unaware of "Left Neglected" till I got an email from Goodreads about this group, but I plan to read it now. My son's father-in-law had a brain tumor 15 years ago and still suffers from side effects similar to that caused by a brain injury, so I look forward to some insights into what he has gone through. He recently suffered a major stroke at age 50, so if you're looking for your next book topic...
Lisa - I loved Still Alice and look forward to reading Left Neglected soon. I saw on your facebook page that you received many rejection letters in the past. What was that like, and how did you overcome those obstacles? Also, is it true that Still Alice was self-published? If so, that's awesome! I mean, it's an awesome book either way. Thanks for your time!
Lisa, I think it's very generous of you to share your time with us. Thank you.I picked up Still Alicefrom the Browser's Corner shelf at my libray and immediately noticed the inscription "For Alena." Since it's unusual to run across anyone who shares my name, I took the book home. 24 hours later, I sat stunned and deeply moved by your portrayal of Alice and her life-altering condition.
I immediately went to find Left Neglectedand also tore through that book.
I am curious about what led you down your particular writing path. Both protagonists are strong-willed, pwerful women at their peak who face extremely unusual disabilities. Is it the conditions you wanted to explore? Or is it something about women's roles?
Lastly, what do you have planned next?
Two words for your two books: compelling and unforgettable! In Left Neglected, the fascination for me was the adaptive ways of living that differently wired brains require. And, if we are to be honest, we are all differently wired in one way or another, although some with far greater challenges. Still Alice gripped my heart and didn't let go, as my beloved father-in-law suffered from Alzheimer's before he passed away. I always wondered, "what's he thinking, what does he still know or remember?" Lisa, your books invite the reader to reflect on so many important issues in life. I am grateful to you in advance for sharing with us in this discussion group. Thank you.
Lisa, thank you so much for Still Alice. It was an excellent read and one of the most terrifying books I have ever read. Two of my grandparents have Alzheimer's - one on each side - and I finished this book one week before one of them passed away. I find that the best books are the ones which stay with you for months after you have read them...this was definitely one of those. Thank you again! I am certainly looking forward to Left Neglected.
I read Just Alice because I wanted to learn more about Alzheimer's Disease. I'm not a caregiver or in any way in the health field but I found the book incredibly valuable and found myself crying a few times as I read about the trials that Alice and her family went through as they coped with the changes. It was a real eye-opener. I do have one question though and I suppose I could Google this to find out the answer but I'm not sure I could trust the answers I might get. I've read accounts and heard stories about people who die from Alzheimer's. I hope you don't think this is stupid or crass but what is it that makes this fatal?I loved the book and think you did an awesome job with it. I learned a lot.
Lisa, in reference to Kristi's question, isn't it usually physical factors which actually cause death? I know my father-in-law had heart problems and undiagnosed lung cancer. Can someone die just from Alzheimer's? Would it be like losing the will to live?
Kathy wrote: "Lisa, in reference to Kristi's question, isn't it usually physical factors which actually cause death? I know my father-in-law had heart problems and undiagnosed lung cancer. Can someone die just..."Kathy, I also believed that one may be affected with Alzheimer's for a number of years, but would actually die because of a secondary reason such as pneumonia, cancer, etc. Looking forward to hearing from you, Lisa! I think I just might just read the book again!
My dear mother-in-law had Alzheimer's and was in care and eventually died. I think the disease eventually destroys enough of the brain that it can be the cause of death, but I don't really know.
Loved both Still Alice and Left Neglected! As a Speech Language Pathologist that treats primarily adults in a rehab setting, I truly enjoyed Left Neglected. I am actually working with a patient that suffered a stroke and has Left Neglect Syndrome. I treat my pt for both Dysarthria and Dysphagia. I know the patient in the novel suffered a TBI, but I was wondering if in your research you had found patients with Left Neglect to have different levels of success with rehab therapy from a TBI vs. Stroke?I look forward to your next novel. I hope to read soon maybe about Aphasia :)
Lisa, I enjoyed "Still Alice", especially reading it as an audio book because you narrated it yourself. My mom and grandma had Alzheimer's but were both pretty old before it kicked in. Hearing about it regarding a younger woman was both more scarey and encouraging as you promoted ways, like a support group, for Alice to deal withit. With both books, you seemed almst to be speaking from experience. Did you work with patients with these diseases? id you have relatives with these two conditions?
I tore through Still Alice, and will read Left Neglected next. Alice and the other characters are believable and moving. The book increased my understanding of Alzheimer's and scared me. I've only known it in the old. My mother-in-law was 82 when she first began showing signs. She and my father-in-law were doing well with a wonderful home help caregiver, even though E would hold a book upside down to read it and would try to put on two right shoes. But the volatility I've read is associated with Alzheimer's victims emerged, just a bit at a time, until finally she hit the caregiver. The hospital would not send her home again, so she spent several years in an Alzheimer's care facility, always seeming miserable and barely responsive, until her death at 89. My own mother lived independently and drove until well into her nineties, when she chose to move into an assisted living facility at the lowest level of care. Her mind deteriorated abruptly, and she was asked to leave. My sister found a place for her in the locked part of a care facility, where she was able to have a spacious bright private room with some of her own furniture, excellent attentive care, was put on hospice, and within the year had a seemingly peaceful death. I visited her both when she moved and shortly before her death. While she was diagnosed as having Alzheimer's, I doubt that, and the treatment is the same in the very old regardless of what kind of dementia they have. She actually became more mellow after she was allowed to become bedridden.
Looking forward to reading more of your titles. Loved Still Alice very much. What an insight you gave me, the reader, how an Alzheimer patient might feel. We recently had a retired teacher in the community (small town) have a stroke and his days consisted of returning many times to the post office to collect his mail. The post office would stick random junk mail in his box so he would not panic if no mail was in box and many individuals would take him home if he had wander to far from his comfort zone. It's rough to see this happen, but awesome when a small town pulls together to make his day seem normal.
I can't imagine what it would be like to forget the layout of my home, or the children I bore or the husband I married. I wish and pray that we can find a cure for this one.
My own father-in-law is dealing with a super nuclear brain palsey that makes it impossible for him to communicate except in one word answers. He can understand us, but cannot fully participate in a conversation.
I read this book in a lunch/book club group through the Iowa Western College non-credit program. We meet once a month at lunch time. We all enjoyed the book and had a great discussion hour especially since one of our readers is a nurse.
Mod
Wow, thanks so much for all of these amazing comments and questions!! I'll be here all week, starting now--feel free to jump in on any of my answers, questions asked by others, or to ask new questions. This will be great fun!
And on a personal note--today is my baby girl's 1st birthday (my youngest of 3 kids). So a Happy Birthday to my Stella!
Here we go!
Lisa
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Did you base story on actual person?"
Hi Julie,
Do you know I grew up in Waltham, MA? How did the book discussion go?
The story is not based on an actual person. I came to know 9 people who are living with Left Neglect, and they helped me understand as best I could what it feels like to have this condition--and all the kinds of adaptations that go along with it. But Sarah Nickerson is purely a fictional character.
Mod
Hi Marsha,
Thanks for your questions. How common is Left Neglect?--Interestingly, this would be the very first question I'd have to answer when I worked as a strategy consultant for biotech and pharmaceutical companies. We'd be asked to size the market potential for a new drug for renal failure or a gene therapy for cardiovascular disease or a new way to deliver insulin for diabetes. What's the incidence and prevalence? I tried many times to get an answer to this question for Neglect but couldn't come up with any number I was confident in. About 40% of strokes occur in the right hemisphere, but anywhere from 10-70% of those patients have symptoms of neglect. And there are TBI patients and hemorrhages who have Neglect, but no one is keeping track of this information. It's not a "well-organized" condition, meaning that there aren't any National Left Neglect associations or support groups. It's not well-studied. That said, I thought prior to writing this book that Neglect was quite rare, and I worried about finding people who have it. But if you call any rehabilitation hospital in the country, they will say that they have someone with Left Neglect there right now. So, without knowing the actual numbers (like we know with Alzheimer's), it's more common than I'd thought.
Mod
Okay, so why did I choose to write about someone with Left Neglect?
The seed for this book came more out of a pure curiosity than a personal place (like STILL ALICE). Before I began writing Left Neglected, I’d never met anyone with this condition. Over the years as a neuroscientist, every now and then I’d come across a quick case study or mention of a patient with Left Neglect in a clinical journal. The information was almost always limited to pen and paper test examples of the symptoms of this condition: copying a picture of a face or a clock, circling all the letter A’s on a page, or naming all the items shown in a picture. The patients always neglected to include the left eye, the numbers 7–11 on the clock, and the A’s and items on the lefthand side of the page. And while I thought this was all quite fascinating (I am a nerdy neuroscientist after all), what captured my attention and imagination even more was wondering how these patients live with unilateral neglect. What is life like outside the doctor’s office? How does someone with this condition get dressed, go to work, cook a meal, eat a meal, function in a relationship? Can people with Neglect live productive lives? How does someone navigate a whole world while only paying attention to half of it?
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Hey Marsha:
Brain injury is considered the "invisible illness"..."
Hi Tracey,
Thanks so much for posting. You're absolutely right--often people with head injuries have many problems to deal with at once. Memory, cognition, physical, emotional. While this is true, it can also be true for a patient to have a "discrete insult" resulting in pure Neglect. I met several people whose cognition is entirely intact, and the only real issue they're dealing with (and still dealing with every day now 10, 12, 15 years after the injury) is Neglect.
One of my goals is to tell the truth under the imaginary circumstances I've chosen (something I learned when I trained as an actress!). So you're right, I could've made Sarah's truth be one of facing Neglect and cognitive deficits. But it can also be keeping with the truth to give her pure Neglect and no other deficits--and that's what I went with!
Mod
Julie wrote: "I am a member of a wltham book club and we are meeting to discuss left neglected next monday.
Did you base story on actual person?"
Hi Brenda,
Thanks so much for reading both books and for taking the time to post here!
I did a lot of research for this story. I interviewed both men and women who have Left Neglect, their husbands and wives, their neurologists, acute care nurses, occupational therapists, physical therapists, speech therapists, rehabilitation specialists, physiatrists, and research scientists. Talking to people who actually live with Left Neglect – this is where the gold is. This is how you learn all the real details you simply can’t find in the text books.
My next book is called LOVE ANTHONY. It's about a boy with severe autism, and it's about his mother and another woman who becomes connected to them in an expected way. I believe it will be published in January 2013. You can find out more details about the book in progress at www.lisagenova.com or at my facebook page: www.facebook.com/authorlisagenova.
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Kerri T. here, from Denver. So glad to have a chance to say hello, and tell you how i loved this book... When you were at Tattered Cover, someone asked why pts rarely if ever have Right Ne..."
Hi Kerri,
This is one of my favorite questions because I get to teach some neuroanatomy! (Don't be scared everyone--I'll be gentle!).
Why there is no Right Neglect:
Most of our brain is what we call "bilaterally symmetrical"--what's on the right is also on the left. But some of our brain anatomy and functions are specialized. For example, you might already know that our language center is located primarily on the left side of our brains.
Well it turns out that the ability to pay attention to what's around us is also specialized. Our "right attention center" pays attention to the whole world, everything on both the left and right. But our "left attention center" only pays attention to what's on the right. So if you have damage to your Left Attention Center, it stops paying attention to everything on the right---but you don't notice a deficit, because the Right Attention Center is still paying attention to the whole world. Whereas, if you damage the Right Attention Center, it stops paying attention to the whole world, and the Left Attention Center can only pay attention to what's on the right, and no one is paying attention to what's on the left--and you have Left Neglect.
Best wishes to your family and your Dad. Thank you for letting me know that STILL ALICE is helping your family to better understand what he's going through.
Such a pleasure to have a chance to interact you, Lisa. I really loved both of your books. I work in the medical field and love how informed and detailed your books are. I just wanted to let you know that Left Neglected inspired me to go skiing for the first time in 20 years. As a busy mother of two who works full time, the book totally inspired me to enjoy what I have. My son and I played hooky one day and enjoyed a fabulous day on the slopes together. I think it is a day we will both never forget. Thank you so much for that!!!! Mandy, NY
Hi Lisa. I really enjoyed reading Still Alice and was so excited to see that you had self-published at first (I loved the Q&A at the end of the book). I saw that you were endorsed by the Alzheimer's Association and was wondering how you were able to do that. I've self-published a fictional book on grieving the loss of a child and was thinking about contacting some grief groups. I'm just curious how you went about it. Thanks!
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Illness is becoming more common as an important element of contemporary literature, Still Alice and Left Neglected being among them. The arts are the only place where certain important issues..."
Hi Russell,
Thanks so much for this great comment and question. I think fiction is powerful place to explore conditions like Alzheimer's, traumatic brain injury, autism. And here's why. If I wrote a non-fiction book about Alzheimer's (instead of STILL ALICE), then that book would mostly be read by only the Alzheimer's community (caregivers, doctors, people with dementia). But if I explore what it feels like to experience Alzheimer's, and I instead put that information in a fictional narrative, then we have a book that will be read by people BEYOND the Alzheimer's community. If it's a novel, then it has the chance to reach, move, enlighten, inform people who might otherwise not know anything about Alzheimer's. Likewise with Left Neglect and autism. If I don't have a son with autism, I'm probably not going to seek out a self-help or nonfiction book about this topic. But I might read a novel about a boy with autism, and then, while I'm hopefully being entertained by a compelling story, I'll also have the chance to gain a sensitivity and better understanding of people who are living with autism.
Hi Lisa!I am an aspiring author. I wanted to know, what does it take to be a good author?
-Taylor
Lisa wrote: "Russell wrote: "Lisa,Illness is becoming more common as an important element of contemporary literature, Still Alice and Left Neglected being among them. The arts are the only place where certain ..."
You are so right about the power of fiction. I finished Still Alice and am about halfway through Left Neglected. Both are amazing depictions of the experience of the victim.
Thanks, Lisa, Very Much! FYI- i used the "cotton-ball" situation from Left Neglected to demo in our Neuro ICU class... it was a GREAT visual, and now this info will help explain it further- I had everyone read the book as well... Amazing to help raise consciousness. Thanks, and Happy Birthday to Stella! Enjoy!
Happy Summer Lisa,Hope you and the kids have been enjoying some down time. My question is this, in both Still Alice and Left Neglected you have the woman suffering through Alzheimers or brain injury. Why?
(I encouraged our book club to think how the books would be different if the illness had occurred to the men.)
This is so great that you're doing this chat, Lisa. I wish all the authors of the books I read would do the same.
Tracey said, "Many of my clients require YEARS of therapy to get cognition working well, and most don't return to their pre-accident cognition levels."That's right. My car was hit by a drunk driver in 1977, and I suffered a head injury. I was in a coma for two months and have been handicapped ever since.
I tried to edit my post above, but something's wrong with goodreads.com today. So I'll just add here that my handicap also includes left neglect. So I'm anxious to read the book.
Beth, I hope I'm not prying too much, but I'm curious to what extent you left neglect affects your life, for example reading. How do you have to adapt with your handicap to reading? Thank you for sharing this information about your life. I am constantly amazed at the courage of people.
Kathy, I get your comment often (I am constantly amazed at the courage), but you do what you have to do. Honestly, that's all there is to it.My left neglect/brain injury affects so much more than I could remember to tell you! As far as reading, very much. I read half as fast as I did before because I have to really try to stay on the right line and go to the next line. I have double vision now but have learned to tell the correct from the crooked. So I can read and drive.
Beth wrote: "Kathy, I get your comment often (I am constantly amazed at the courage), but you do what you have to do. Honestly, that's all there is to it.My left neglect/brain injury affects so much more th..."
So glad you can read and drive, Beth. Thanks for sharing with us about your personal experience. And, I still say that you're amazing.
Saw you this evening on CNN discussing Coach Summitt having ALZ. You did great in the interview! Hope all is well.
Janelle wrote: "Saw you this evening on CNN discussing Coach Summitt having ALZ. You did great in the interview! Hope all is well."Wish I'd seen that. Will have to google it.
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Hi Bailey,
Yes, I received A LOT of rejection responses for STILL ALICE. I sent out 100 query letters to literary agents back in 2006. I'm still waiting to hear back from some! I mostly heard, "Dear Author, No thank you." Funny, I thought I'd thrown out all of those rejection letters years ago (it was a BIG pile, at least 50), but just the other day when I was cleaning out my desk, I found a folder with 19 more rejections. I snapped a photo and posted it to www.facebook.com/authorlisagenova.
Four literary agents wanted to read the manuscript--one I still haven't heard back from, two thought Alzheimer's was too depressing a subject/no one will want to read about this, and the last thought, given my scientific background, that I should write non-fiction instead.
So after about a year of this and with no other real option other than sticking STILL ALICE in a drawer and doing something else, I self-published it. This was July 2007. I paid $450 to iUniverse and began selling the self-published edition of STILL ALICE out of the trunk of my car. I did this for 10 months before I signed with an agent--who then quickly sold it to Simon & Schuster. It's been quite a crazy ride!!
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Hi Susan,
Thanks so much for your kind comments and for you blog review! Great to see you here! Yes, I'm writing the next book, LOVE ANTHONY, today. I'm on chapter 7--looking forward to school starting, getting my oldest back in school, getting back into the routine.
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I want to thank you. I'm helping take care of my best friend who has s..."
Hi Sally, Thank you for posting this. I can't tell you how rewarding this is to hear, to know that STILL ALICE is having such a positive impact on people who are going through something so difficult. Best wishes to you and your best friend.
You might also like going through some of my old blog entries (www.lisagenova.com)--I posted a lot of stories about living with Alzheimer's and include interviews with people who have it. These might help as well.
Mod
Thank you, Janelle! It was a great opportunity--I so admire and respect Pat Summitt for being so open and candid about her Alzheimer's. She'll help so many people dealing with this disease who are afraid to talk about it, who feel embarrassed or ashamed or alone.
Ask Lisa Genova!
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Still Alice (other topics)Still Alice (other topics)
Left Neglected (other topics)
Still Alice (other topics)
Left Neglected (other topics)
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So looking forward to chatting with you about LEFT NEGLECTED. Feel free to post questions and get involved in the conversation.
See you here soon!
Lisa Genova