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The controversial ending(s) of Still Alice.

I added Lisa Genova’s Still Alice to my TBR list last year, but didn’t read it until a few weeks ago. My free Oyster trial gave me the nudge I needed to read it now instead of someday.

I was hesitant to read this novel, which has been described as uncannily realistic: the novel tells the story of Alice Howland, a 50-year-old Harvard professor who is diagnosed with early-onset Alzheimer’s disease. Because of my family’s history with Alzheimer’s disease, I was afraid it would hit too close to home and be horribly depressing.

(I had similar fears about The Sweetness of Forgetting and The Geography of Memory, both of which I loved. That helped.)
The controversial ending(s) of Still Alice

Still Alice wasn’t depressing. Terrifying, yes, but not depressing, and surprisingly beautiful. In fact, the book ends on a hopeful note.

But there’s controversy surrounding that hopeful ending.

The story begins with the book’s path to publication. Still Alice almost didn’t get published. Genova, who holds a Ph.D. in neuroscience from Harvard, was advised not to write the novel at all, or at least not to publish it. Her colleagues said writing fiction would be career suicide.

Genova completed her novel anyway, then spent a year shopping it to literary agents and editors, who all told her it wouldn’t sell. She didn’t believe them: she self-published Still Alice in 2007, and set out to find her market.

Genova was inspired to write Still Alice because of her grandmother’s experience with Alzheimer’s; she was convinced the story would resonate with the millions touched by the disease. She reached out to the National Alzheimer’s Association, who loved it, endorsed it, shared it on their website, and asked Genova to blog for them. In the meantime, Lisa started her own blog and took to social media.

The controversial ending(s) of Still Alice

Lisa Genova and Julianne Moore at the Sony Pictures Classics dinner the night before the Oscars (photo source)

The book sold. Not even a year later, Genova signed with Simon and Schuster. The book was released on January 6, 2009, with an initial print run of 250,000 copies. (That’s a lot.) In 2014, the book became a major motion picture; Julianne Moore just won an Oscar for her portrayal of Alice.

The book was ready to go; Genova had been selling her self-published edition for over a year. But before she inked her deal, Genova was asked to do one thing: write a new ending.

(If you want to remain 100% spoiler-free, stop right here—though it’s not much of a spoiler, given the topic.)

Genova describes it like this:

In the self-published edition, the book ends with John in the coffee shop. Before I signed with my literary agent, she asked me to write a new ending. I wrote what is now the epilogue, and I love it. I’m so grateful she asked me to do this, and the book got this sort of second chance at having the right ending.

Readers vehemently disagree about which is the “right” ending. Some prefer the original ending with John sitting in the coffee shop, tears running down his face as he reads about the failed trial of Alice’s Alzheimer’s medication. They claim the new, hopeful ending is false: she shouldn’t have been asked to inject hope into a hopeless disease.

Some prefer the revised ending, as I do. I don’t think it’s false: I’m reminded again of The Geography of Memory, whose opening line is “I wrote this book because I believe the news about Alzheimer’s is more hopeful than what we hear on the street.”

Make no mistake: Still Alice is devastating. But Genova’s epilogue—a mere 1200 words or so—gently altered the novel’s portrayal of Alice’s quality of life, and shifted its themes from from despair to love.

Some readers applaud the shift. Some readers still think it’s a mistake.

Now you know the story: decide for yourself. 

I’d love to hear your thoughts on this, especially if you’ve read Still Alice

A big tip of the hat to Heatherly, whose comments sent me down this rabbit trail.

Books mentioned in this post:

Still Alice

Still Alice

This is one of my '7 books that will make you a better human'. Oliver Sacks wrote, "In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with disease, we gain wisdom about life." That's what Genova offers in this uncannily realistic novel about Alice Howland, a 50-year-old Harvard professor who is diagnosed with early-onset Alzheimer's disease. The story resonates with the millions touched by the disease, and nurtures empathy in those who are fortunate to have no firsthand experience with it.

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About the Book

Publisher’s description:

From New York Times bestselling author and neuroscientist Lisa Genova comes the definitive—and illuminating—novel about Alzheimer’s disease. Now a major motion picture starring Oscar winner Julianne Moore! Look for Lisa Genova’s latest novel Inside the O’Briens.

Alice Howland is proud of the life she worked so hard to build. At fifty years old, she’s a cognitive psychology professor at Harvard and a world-renowned expert in linguistics with a successful husband and three grown children. When she becomes increasingly disoriented and forgetful, a tragic diagnosis changes her life—and her relationship with her family and the world—forever. As she struggles to cope with Alzheimer’s, she learns that her worth is comprised of far more than her ability to remember.

At once beautiful and terrifying, Still Alice is a moving and vivid depiction of life with early-onset Alzheimer’s disease that is as compelling as A Beautiful Mind and as unforgettable as Ordinary People.

Details
Author:
Series: 7 books that will make you a better human
Length: 352 pages
ASIN: 1501106422
List Price: 7.99
Audiobook Price: 12.99 (Whispersync)
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35 comments

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  1. Cathy Armour says:

    Ditto this: “Make no mistake: Still Alice is devastating. But Genova’s epilogue—a mere 1200 words or so—gently altered the novel’s portrayal of Alice’s quality of life, and shifted its themes from from despair to love.” (Well said.)

    • Amy Patton says:

      I agree. Well said. My grandmother also had Alzheimer’s. Reading Still Alice was incredibly hopeful. And I needed that. It reminded me that the beautiful, loving and wise woman I always knew still existed beneath the disease. It gave me the awareness that should I ever have to watch or care for another in this situation to always treat them as though they are Still _______.

  2. Sarah says:

    I’m glad you wrote about this. I’m waiting on my audio copy to come in from the library, but I was hesitant because it seemed depressing. Not that I won’t read depressing books, but maybe right now in my life isn’t the best. However, I am looking forward to reading it. I think I got the author narrated edition. (I could be wrong – hard to tell on the library’s website).

  3. Dawn Reiss says:

    I read this a week ago. I’m pro-epilogue. The book was really good, very readable, with moments of beautiful writing that surprised me. I didn’t find it c depressing either. I loved the relationship between Alice and her youngest daughter.

  4. Hannah says:

    I’m commenting, not because I read the book, but because I’m fascinated by the fact that this author felt extremely passionate about her topic–and her work–but was humble enough to listen when others felt she needed another (nuanced, different) ending. I think this artistic flexibility is essential in order to create something good. You have to have a certain faith in what you’ve made, but also a willingness to listen to quality feedback while ignoring useless feedback. And you have to develop a certain discernment to recognize the difference between the two.

  5. Amy says:

    As the in-town daughter caring for my mother who has Alzheimer’s, I did not care for The Geography of Memory at all. Hoping to get the courage to read Still Alice, or at least see the movie. The perspective sounds good.

  6. Anne says:

    I’m glad to hear it’s not depressing. I’ve been hesitant about reading it. I’m curious to read it even more now that you’ve shared about the epilogue. And what an interesting story about her self-publishing journey.

  7. Belinda says:

    I loved the epilogue. It turned her children into true champions and illustrated the fact that the only way through a disease as devastating as Alzheimers is together!

  8. Heather says:

    I read the book five years ago and I couldn’t remember the ending, so I guess that it didn’t stand out that much to me, but I also didn’t know that Genova was asked to write a new ending so I most likely wasn’t focused on the ending (I just Googled the ending and I do like how it ended). I liked the book and I thought that the movie was also good.

  9. Ellen says:

    I think the epilogue is wonderful. It’s still heart-wrenching; it’s still messy. It’s still real life. But the beautiful way in which her family wraps around her is something I’ll never forget. And Alzheimer’s is a present threat in my family, too.

  10. Jeannie says:

    I actually didn’t know that Genova originally had a different, sadder ending. We read this book for our book club a few years ago and had a great discussion of it. (The woman who chose the book had 2 parents with dementia so it was a topic close to her heart.) My feeling then was that the ending was moving, but a bit contrived and (now ironically) Hollywood-like. But I can see why the publishers would ask her to change the ending — and why she agreed. The book’s popularity would probably not have been the same without the change.

    • liz n. says:

      I also found the ending to be contrived. It’s perfectly fine for a book to end on a sad note, especially when dealing with topics such as Alzheimer’s. It was touching, but I felt as though, as a reader, I was being handled with kid gloves after having been run through the mill, and I just didn’t buy it. The second ending doesn’t take away from the rest of the book, but I still find it unnecessary.

  11. Karen says:

    I’m like Heather ^. I read the book several years ago right as both my mother in law and father were diagnosed with Alzheimer’s. I saw the movie about a month ago. Interestingly, I was totally depressed by the movie, but not by the book. Perhaps that can be attributed to where I am in my own Alzheimer’s experience. I did not know Lisa Genova was asked to rewrite the ending. I think the addition of an epilogue is appropriate. Life with Alzheimer’s is a winding path with daily mountains to traverse. No one ending is right or wrong. Some days there is hope….other days feel hopeless. I’m just glad she wrote the book, regardless of the ending, because it gave me so much insight into what may have been going on in the brains of people I loved who were lost before they were gone.

  12. joanna says:

    I have not read the book or seen the movie. My mother of 70 years old is in late stage of it. Let me tell you this disease is devastating. I am hopeful for myself down the road if I end up with it too. There is no hope for my mom but to take one day… one hour at a time.

    • liz n. says:

      My utmost sympathies, Joanna. My grandmother is in the late stages, and what the worst of it is changes day to day. I am wishing moments of peace for you.

    • Anne says:

      Joanna, I’m so sorry to hear it. My grandmother died of Alzheimer’s several years ago; I can’t imagine what it must have been like for my mom, and for you. Wishing peace and grace for you and your mother.

  13. Lisa says:

    I am a speech pathologist who has worked with patients with dementia for over 20 years, and I absolutely loved Still Alice because I thought it was very real. I have since recommended it to numerous families. I never knew about the different endings but appreciated the epilogue. I thought it was realistic that the husband and children reacted to the late stage so differently.

    I didn’t like her other book Left Neglect as much because in my experience I hadn’t seen a person with head injury present with just left neglect, but Love Anthony had me sobbing like a baby at its ending. So realistic and beautiful. Lisa Genova has an amazing gift for making neurological impairments relatable.

    Another good book about dementia but with an entirely different view point of a granddaughter is The Quiet Roar of a Hummingbird by Catherine Gentile. The person with dementia is much older and is placed in a nursing home. The author wrote the book after caring for her mother.

    • Anne says:

      Lisa, thanks so much for sharing your thoughts out of your own professional medical experience. And I appreciate the book recommendation: I haven’t heard of the Gentile book before.

  14. Byrd says:

    Yet another enjoyable, non-depressing book about dementia: Elizabeth is Missing. In this one, it’s a mystery where the main character has dementia, yet is clearly the hero solving the mystery. It’s told from her POV and is really brilliant. I just wanted to give her a big, confusing hug.

  15. Rachel says:

    I read the S & S edition years ago, and the epilogue sticks with me more than the rest of the book. It was sweet to see Alice continuing to find joy so far past the point in her disease where she thought life would no longer be worth living, and to see her daughters finding ways to connect with her even Alice didn’t remember who they were. It’s such a contrast from the confused fear and suspicion I’ve seen in Alzheimer’s characters in movies and TV. She trusts her daughters and feels safe with them, despite not having the capacity anymore to know exactly why she should. Plus my inner linguist was totally geeking out at the narrative – Alice’s drastically reduced vocabulary didn’t stop her from having a descriptive inner monologue.

    “John in the coffee shop” didn’t ring a bell – I had to pull my copy off the shelf and re-read the last chapter. If the story had ended there, I don’t think I would have loved it as much as I did.

  16. Carol says:

    I enjoyed reading all the thoughtful and diverse comments……I completely agree with Rachel’s comment above! While I certainly understand Alice’s fear and desire to end her life under her control, I loved the hopeful ending where Alice could enjoy a certain quality of life with support and care from her loving family. (I loved this book more than Me Before You for that reason: I thought his suicide was depressing …. although he couldn’t live life on his own terms, he could still enjoy a high quality of life with someone who supported and loved him.) I realize that even with hopeful endings that under the best of circumstances Alzheimers (and complete paralysis) is devastating, cruel, and difficult for everyone.

  17. Tonya says:

    I really appreciated the epilogue! While I am not caring for those with dementia, I am caring for aging parents. The beautiful point of the ending for me was that even though an individual is no longer who they used to be, they still have value! This book came at such a perfect time for me. I was discouraged thinking of specific things that my father in law used to do and could no longer do and my frustration with him. This prompted such a change in my focus! I loved the ending which for me made the book memorable and beautiful and applicable to my life!

  18. Bob Hankes says:

    I’m a retired high school English teacher who has read all the classics and taught some of them. My father died of complications from Altzheimer’s and Dementia. The two endings are different but only slightly so, to my mind. There’s much more hope at the end of the movie than in the epilogue to the book. But read it all and watch it all – this is the stuff of great art. The book is well-written and the acting in the movie is exceptional.

  19. Judy Wallace says:

    Thank you for this insight. I saw the movie when it was released, and just recently found the book and could not put it down. I wish that I had had the opportunity to read this book when first my dad, and then my mom, struggled to get through each day, and were forced to cope with the terrifying changes as the disease progressed. As a caregiver, I often felt at a loss to understand what they were feeling, or how their perceptions had altered … this book gave me a sense of that. Highly recommend this to anyone whose life is affected by Alzheimer’s.

  20. Laura Lynn says:

    I wanted to comment, but was curious to see where my opinion fell in the midst of others’. I find that I identify mostly with Belinda. My great grandmother died with dementia, and then her daughter, my grandma, died with dementia. My mother and I have discussed the possibility we may walk that same path one day. I felt the book ending to be plausible and probably in almost every case accurate. I did not find the movie to give false hope. What I found from the movie was the reminder that, even in the midst of devastation and deterioration, love can always intercede, supersede, and bring blessings to everyone involved.

  21. Joanna Foster says:

    I loved reading Still Alice a second time years later…(White cover with blue writing) I feel just a little confused..In the first paperback, I remember towards the end John going to visit Alice in a Seniors home, where she is caring for an elderly man and mostly ignores John. John feels very sad observing this on multiple visits.
    In the newer version, there is no mention of this scenario, and eventually in the Epilogue, I am delighted to read that Alice lives with her children and didn’t have to move to New York with John. Moving a person with Alzheimer’s to a new environment can be very upsetting for them…Please clarify and Thankyou for adding this wonderful ending to the book…

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