BPL Book Discussion: Still Alice

Way back on October 15th, the BPL Book Discussion Group met to have our monthly book discussion on Still Alice by Lisa Genova.  I have 2 reasons for being so late with this.  The first is I just kept putting it off for other deadlines.  The second is once it got to be really late, I waited because I am also discussing this book with my class tonight, so I figured I would save the write up for my weekly class preparation.

Also, please note that Still Alice was recently named on of the 30 books to be giveaway on World Book Night.

No matter which way you look at it though, I am seriously delinquent on this post.  So here goes...

Here is the publisher's description:

Still Alice is a compelling debut novel about a 50-year-old woman's sudden descent into early onset Alzheimer's disease, written by first-time author Lisa Genova, who holds a Ph. D in neuroscience from Harvard University. Alice Howland, happily married with three grown children and a house on the Cape, is a celebrated Harvard professor at the height of her career when she notices a forgetfulness creeping into her life. As confusion starts to cloud her thinking and her memory begins to fail her, she receives a devastating diagnosis: early onset Alzheimer's disease. Fiercely independent, Alice struggles to maintain her lifestyle and live in the moment, even as her sense of self is being stripped away. In turns heartbreaking, inspiring and terrifying, Still Alice captures in remarkable detail what's it's like to literally lose your mind.

As it states above, Still Alice was a first novel for Genova and became a huge best seller.  Genova has a PhD in Neuroscience and all three of her novels feature characters with diseases of the brain.  However, the most striking thing about Still Alice as you will see, is that we watch the downfall of one brilliant person as early onset Alzheimer's claims her brain all from her perspective only!  This narrative choice by Genova is the key to this novel's success as a book discussion choice.

On to our specific discussion:

• I used the same ice breaker as always, asking for likes, dislikes, so-so votes
• 10 liked, no disliked, and 4 so-sos.
• The like people began by talking about how they saw loved ones get Alzheimer's and watched their downfall.  These participants talked about how seeing the disease from the other point of view was helpful and enlightening. The so-sos were because the book was "emotionally difficult to read" and too rosy.  One person said she felt as though she was eavesdropping on someone's life.  Others chimed in that the personal nature of the book was why they enjoyed it.  Also 2 of the so-sos wanted to see other perspectives, but the likes chimed in that this is why they loved the book.
• Overall, this ice breaking discussion showed how this tactic can work wonders for getting a group warmed up.  We moved directly into a detailed and interesting discussion right from here.
• John, Alice's husband came up right away.  I think this happened for 2 reasons.  First, Genova writes him as a polarizing character, but second, for my group at least, since they are mostly mature, long time married women, they felt emotionally connected to his reluctance to Alice's disease. Here is some of what was said about John
• Horribly selfish: took job in NYC and left Alice to be cared for by nurses and children.  But someone asked if maybe John told her he was going and they had a discussion about it and she forgot.  Remember, we only get everything though her eyes and as Alice's doctor tells her (and us) early on, she is not a reliable person to tell others what is going on in her life since she will forget.
• But on the other hand, he obviously did a lot of research into her disease and tried to get her into studies.
• Also, it was hard to remember how young they really were (50) and Alice would probably not have wanted John to give up her career and successes for her.  They were both driven  scientists and academics. 
• It is also made clear that they had drifted apart years ago and although they loved each other, their careers were both first in their lives before her illness.
• But, said others, when you marry it is for better or worse.
• The scene at their vacation house when she strips and goes for a swim, thinks about drowning herself but realizes she has too much to live for was memorable for many.  And then John appears and comes into the water to join her.  This scene says so much about their love and commitment to each other.
• I want to bring up Alice's plan to kill herself if her disease got bad right away because the group did.
• People were not surprised to find out that Alice had created an elaborate plan to alert herself when it was time to end her life.  She made the directions and computer file when she was not very ill.  As a practical scientist it made clinical sense.  But when she put her Blackberry in the freezer as her disease got worse, the daily reminder to ask herself key questions ended.
• When John found the computer file we learn a lot about him as a person.  Since we know about the file from Alice, when John starts to ask her the questions she had set up for herself, we know he found it too.  We were torn about how he handled the knowledge that she had wanted to end her life when she couldn't remember key things.  Some felt that he wasn't respecting her wishes; in fact for one person, John became the villain of the story because of this.  Others felt the rules had changed--she was going to have grandchildren to enjoy and since one of the daughters had a 100% chance of getting the same disease, he was setting a good example for her; that she could still have a good life.
• This led to a discussion of the heredity issues here.  Someone said this was one of the novel's biggest strengths--dealing with the issue so directly. Since we are dealing with a disease that if you possess the gene you have a 100% chance of developing early onset Alzheimer's, Genova can provide 3 choices through 3 characters.  Not only does she offer the three choices directly, she includes a discussion about why each makes this difficult choice for themselves:
• Anna chose to find out because she wanted to have children, so her status will effect the lives of unborn children.  It turns out she tests positive, but the good news is that her husband and her can preselect fertilized eggs that do not have the gene, guaranteeing that she does not pass the disease on to another generation.
• Tom, a doctor decides to get tested because his scientific mind simply needs to know.  He is negative.
• Lydia, the actress with no family of her own feels like she has nothing to lose either way at this point in her life.  She chooses not to find out now because she will get it whether she is tested or not.
• People really liked Alice's narration.  I mentioned above how the doctor tells Alice (and the reader) how she is not the best person to talk about how she is doing since her memory is slowly going.  As readers we were totally caught up in Alice's mind.  We, like her believed what we were seeing through her eyes, but unlike her, we remembered the things she forgot and realized that she didn't tell us everything.  We enjoyed stepping back and looking at situations with this knowledge, and discussed a few from this point of view.  The novel presents an interesting take on the unreliable narrator. Normally, the unreliable narrator is unreliable for nefarious purposes.  Here it was innocent, but just as effective.  We were impressed with the skill Genova had in creating this complex narration in a first novel.
• Also, by seeing things from Alice's perspective only, we could see how painful it was for her to go from a professor at the top of her game, someone who studies the use of language, and then turn into someone who cannot find the right word.  It was heartbreaking, but since Alice had the intelligence and knowledge to explain to us what this felt like, it made the story even more powerful.
• Although in our group this did not come up, the negative reviews on Amazon talk about how clinical this book is as a flaw, but I think they are not understanding the structure of the book.  Since the entire book is supposed to be from Alice's pov and she is a scientist, this is probably how she would look at it--in a clinical emotionless way.
• Another complaint is that the kids seem too rosy and happy about it all, but again this is a limit of Alice's narration.  We are only seeing the reactions she sees and can remember.  They may be putting up a brave fight in front of her and only delving into their personal sadness when away from her.  As readers we would never know. These complaints are not valid in the way the book is structured.
• We discussed the irony of the scene when Alice went into the neighbor's house.  For a few participants, this scene was a perfect example of what was happening in Alice's brain.  She goes "home" and enters the kitchen.  She is with it enough to understand that the cabinets are not arranged how she would like them and goes about reorganizing the kitchen.  However, it turns out things are out of order because she is in her neighbor's kitchen. This scene illustrated what was going on in her head more than scientific explaining could do.
• We talked about Alice's increased connection to her dead mother as the story went on.  While it was heartbreaking to watch Alice relearning that her mom and sister had died years ago over and over again, it was nice to see her renewed attachment to her mother's butterfly necklace. As Alice got sick and lost her identity as a professor, she began to live her life more.  Her mother's saying that butterflies may only live 2 days but their life is so beautiful, really began to hit home for Alice.  Someone else pointed out that when you are sick, you want your mom, which explains why Alice's thoughts turn to her mother so often.  Alice is also finally able to cry at her mother's grave as her disease gets worse.
• We talked about Alice's children a bit, but it was Lydia who took up the most time.  Lydia and Alice conflicted the most before the early onset Alzheimer's  Lydia, a brilliant student, did not want to go to college; instead, she moved to LA to be an actress.  As Alice got sick. Lydia checked in with her daily and was the one who could see the little changes in Alice as they piled up.  Someone commented that actors are students of human behavior so it made sense that Lydia reacted the best to Alice's demise.  Another person said that since they had had the most antagonistic relationship before the illness, they actually understood each other the best.  Still it was heartbreaking to watch Alice enjoy Lydia's performance in a play and then not know she was her daughter.
• One of the most interesting things about Alice is that she is frustrated by the lack of support for the Alzheimer's patients themselves. Since most Alzheimer's patients are elderly, it is most often the caregivers and family who need support.  But with early onset, the patients themselves are young, fit, and still able to care for their own physical needs. Like Alice, they are quite often all too aware of what is going on and even more isolated because their peers are out in the workforce or in the community still.  With the elderly patients, they were already more withdrawn from society.  We liked seeing this group meet and the confidence leading it gave to Alice.  But it was upsetting to see how unresponsive the system was to Alice's request to create this group, and to see how fast Alice's downward spiral went.
• We wrapped up the discussion talking about the book's final scene which also happens to be the only scene NOT from Alice's point of view.  We see John reading a newspaper report that the experimental drug study which Alice was a part of was being discontinued because the drug did not appear to be working.  Why end here.  We came up with a few reasons:
• This showed that John had changed and matured; he had finally given up the denial and the fight for science to win out and save his wife.
• It gave him closure
• It lets us know that John can mourn the old Alice and gives us hope that he might finally embrace the new Alice
• Finally, it is closure for us a the readers too.  This was an emotionally draining book and we can now let Alice move on also.
• As usual we ended with words or phrases to sum up this book:
• heartbreaking
• inspiring/inspirational
• terrifying
•  educational
• scary
• painful
• family
• transformative
• emotionally draining
• informed by science
• great characters
• anxiety

Readalikes:  There are many different directions you can go in terms of readalike suggestions here.  The publisher's reading group guide suggests three titles, the info in parentheses are mine though:

• A Beautiful Mind by Sylvia Nasar (for readers who liked following a brilliant character who has to come to terms with the fact that his greatest asset, his mind, is failing him)
• Ordinary People by Judith Guest (for readers who liked the family dealing with tragedy angle of this novel)
• The Curious Incident of the Dog in the Night-time by Mark Haddon (for readers who liked seeing a brain disease through the eyes of the person who has it; also here are some of my thoughts when I read this novel back in 2007)

Of course, many readers will want to know more about earl onset Alzheimer's.  For these readers I direct you to two different books:

• Losing My Mind: An Intimate Look At Life with Alzheimer's by Thomas DeBaggio (for readers who want to see a nonfiction account of one 58-year-old man as he chronicles his own struggles with early onset Alzheimer's)
• Forgetting Alzheimer's: Portrait of an Epidemic by David Shenk (for readers who want to get away from the intimate look at the disease and get more of a big picture view)

For a look at other neurological diseases, Oliver Sacks' The Man Who Mistook His Wife For a Hat is a classic collection of clinical tales on the topic.

Finally, although I did not see this connection anywhere, I found reading Still Alice to be a similar experience to reading Before I Go To Sleep by S.J. Watson.  Click here for my review and to see why.