Still Alice by Lisa Genova

Why I Recommend This Book

This is a book that impacted me deeply. This novel puts you in the shoes of an accomplished and educated woman facing early-onset Alzheimer’s disease. It deepened my empathy and understanding of those facing this disease that does not have a cure. Even a year after reading this book, I find myself thinking about it often.

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Summary

Alice Howland is a cognitive psychology professor at Harvard and a world-renowned linguistics expert with three grown children and a successful husband. Her life takes a turn when she goes on a run around her neighborhood and forgets where she is. Soon she finds herself trying to grapple with the changes in her life, work and relationships as she learns she is suffering from early-onset Alzheimer’s disease at 50-years-old.

Quotes And Info About The Author

• Lisa Genova graduated valedictorian, summa cum laude from Bates College with a degree in Biopsychology and has a Ph.D. in Neuroscience from Harvard University.
• She is known for writing fiction with characters dealing with neurological disorders. She has been acclaimed as the Oliver Sacks of fiction and the Michael Crichton of brain science.
• Still Alice is her debut novel which she self-published in 2007. It was later acquired by Simon & Schuster and published in 2009. It was on New York Times Best Sellers List for more than 59 weeks and has been translated into 37 languages.
• Still Alice was adapted into a film in 2014 and Julianne Moore won an Oscar for Best Actress for portraying the main character, Alice Howland.
• Lisa Genova lives in Cape Cod, Massachusetts with her family.
• For more information about Lisa Genova, you can visit her website here.

In response to the question, why did you write Still Alice: “While I was in graduate school, we discovered that my grandmother had Alzheimer disease. She was in her mid-eighties at the time, and she’d probably been living with the disease for a while. It’s sort of accepted in our culture that 80-year-olds forget things. My grandfather had died, and she was living alone. I think she, her children, and grandchildren looked the other way for a while. So by the time we figured out that she had Alzheimer’s, she was pretty far along in the disease. I was around a lot while she was sick and being cared for. She has nine children and a lot of grandchildren. We cared for her, but there was little we could do but watch this disease systematically disassemble the woman I knew as my grandmother. She didn’t know her kids’ names. She didn’t even remember that she had any children. She didn’t know where she lived. She couldn’t remember to go to the bathroom when she needed to. I would watch her looking at her own face in the mirror and not understanding the image she saw reflected back. She would care for these little plastic dolls as if they were real babies. It was heartbreaking.

At the same time, as a neuroscientist I found it fascinating. We could see the results of the destruction of her brain, and I wondered about the events that were going on inside—the molecular mechanisms that had gone wrong to produce these deficits. I wondered what it must feel like when those parts of the brain that house your personal history—your sense of self and identity—start to deteriorate. What sort of compensatory mechanisms might be going on? And what does it feel like to go through that? Unfortunately, my grandmother was too far along in the disease to be able to communicate what was going on. I thought it would be interesting to talk to someone about his or her own Alzheimer’s who is at the very beginning stages. I understood at the time that this wouldn’t be a conversation with someone in their eighties. This would be someone with early onset Alzheimer’s. And to my knowledge, the story of people with early-onset AD hadn’t really been told.” (Lisa Genova,From an interview with alzforum.org)

Concerning issues diagnosing Alzheimer’s: “I think it is. I’ve talked to a lot of people who’ve been through the process and are now diagnosed with Alzheimer’s. It is typically a long and arduous journey to diagnosis, and for lots of good reasons. Of course, people and physicians want to point to something that is curable first. They want to say, “You need to get more sleep.” They want to say, “I think you’re depressed; we’re going to put you on Prozac.” They want something that’s manageable. But the people I know with Alzheimer’s knew a long time before they arrived at diagnosis that this wasn’t depression. They’d known depression perhaps earlier in their lives, and this is something different. They’ve got a good level of energy. Or they aren’t just apathetic about things. It’s something else. They know they’re tired but not unusually so. Or they’re going through menopause but the changes that are occurring aren’t what’s happening to any of their friends. They know that something is not right. And it takes a long time, often, to get the diagnosis because general practice physicians often aren’t prepared to ask the right questions or to refer them to neuropsychological testing and a neurologist who can really tease out the problem.” (Lisa Genova,From an interview with alzforum.org)

“People diagnosed with this disease early are spending lots of time advocating for earlier diagnosis because it makes a big difference. First, to get the diagnosis provides a lot of relief for people who’ve spent maybe a year or more trying to figure out what the heck is going on. So, oddly enough, being told that they’re not crazy, that they actually have a reason for the cognitive changes that have been going on—although it’s heartbreaking and devastating in some ways, in others I’ve heard over and over again that it’s a relief to finally know what’s going on, that they can now do something, which is to get on drugs like Aricept (donepezil) and Namenda (memantine). While these don’t cure the disease, people tell me they make a world of difference, especially if taken in the early stages. Over and over again, I hear people say, “If I weren’t on these drugs, I wouldn’t be able to talk to you right now. I wouldn’t be able to recognize the letters on my keyboard to write you this e-mail. I wouldn’t be able to dial the numbers on the phone to talk to you.” (Lisa Genova,From an interview with alzforum.org)

For more on diagnosis, see EOAD Diagnosis and Diagnostic Odyssey Interview.

Major Characters

• Alice Howland: cognitive psychology professor at Harvard, expert in linguistics and diagnosed with early-onset dementia at age 50.
• John Howland: Alice’s husband, a scientist at Harvard
• Anna & Charlie: Alice’s oldest daughter and her husband.
• Tom: Alice’s son, single and in medical school.
• Lydia: Alice’s youngest daughter, living in LA to become an actor.
• Dan Maloney: Ph.D. student that Alice is mentoring

Book Club Discussion

1. When Alice gets lost on her run in Harvard Square, why do you think she doesn’t tell her family, especially her husband John, right away?
2. How do Alice’s family members differ in their reactions to her diagnosis? Did any of their reactions frustrate you? Could you relate or sympathize to any of their reactions?
3. How do Alice’s relationships change with her family members as her Alzheimer’s advances? Were you surprised by which family members became her advocates?
4. Discuss Quote 3 from Quotes From The Book and how those who are facing mental challenges are treated in society. How can society and we as individuals do better to have more compassion for individuals facing mental hardships whether Alzheimer’s or other mental illnesses?
5. Butterflies are a symbol of the change Alice must face with early-onset dementia. Discuss Quote 4 from Quotes From The Book and how this comforting thought applies to Alice.
6. Discuss Quote 10 from Quotes From The Book and how Alice decides to spend her remaining time. Did it surprise you that her work she loved so much didn’t make the list?
7. Out of Alice’s three children, Lydia is the only one who decides not to be tested for the genetic mutation that causes Alzheimer’s. What do you think her reasoning was? If you were in a similar situation, would you want to be tested or not? Why?
8. Do you think Lydia goes to college just to please her mother or because she wanted to or both?
9. How did you react to Alice’s plan to overdose on sleeping pills when she wouldn’t be able to answer her five questions? Do you feel like this plan came from a place of love for her family, or of fear and desperation? How would her family respond if they knew her plan?
10. Do you agree or disagree with John’s decision to keep working as Alice’s Alzheimer’s disease progresses? How did you feel about his decision to seek work in New York City? Do you think he is correct that Alice wouldn’t want him to sacrifice his work or do you see his motives as more selfish?
11. How did you feel about the story being told from Alice’s perspective? What do we gain from hearing from her perspective and what parts of the story do we lose?
12. In what ways is Alice still Alice as she goes through the effects of Alzheimer’s?
13. What were your views of Alzheimer’s disease before you read this book? How did your views change or did they change after reading Still Alice?

Quotes From The Book

Quote 1: “‘Please stop this,’ she whispered.

She opened her eyes. Just as suddenly as it had left her, the landscape snapped snugly back into place. The Coop, Cardullo’s, Nini’s Corner, Harvard Yard. She automatically understood that she should turn left at the corner and head west on Mass Ave. She began to breathe easier, no longer bizarrely lost within a mile of her home.”

Quote 2: “She thought about the books she’d always wanted to read, the ones adorning the top shelf in her bedroom, the ones she figured she’d have time for later. Moby-Dick. She had experiments to perform, papers to write, and lectures to give and attend. Everything she did and loved, everything she was, required language.”

Quote 3: “She’d always been addressed with great respect. If her mental prowess became increasingly replaced with mental illness, what would replace that great respect? Pity? Condescension? Embarrassment?”

Quote 4: “Plus, she liked being reminded of butterflies. She remembered being six or seven and crying over the fates of the butterflies in her yard after learning that they lived for only a few days. Her mother had comforted her and told her to not be sad for the butterflies, that just because their lives were short didn’t mean they were tragic. Watching them flying in the warm sun among the daisies in their garden, her mother had said to her, See, they have a beautiful life. Alice liked remembering that.”

Quote 5: “She wished she had cancer instead. She’d trade Alzheimer’s for cancer in a heartbeat. She felt ashamed for wishing this, and it was certainly a pointless bargaining, but she permitted the fantasy anyway. With cancer, she’d have something that she could fight. There was surgery, radiation, and chemotherapy. There was the chance that she could win. Her family and community at Harvard would rally behind her battle and consider it noble. And even if defeated in the end, she’d be able to look them knowingly in the eye and say good-bye before she left.”

Alzheimer’s disease was an entirely different kind of beast. There were no weapons that could slay it. Taking Aricept and Namenda felt like aiming a couple of leaky squirt guns in the face of a blazing fire.”

Quote 6: “She’d come to recognize the difference between days that would be fraught with difficulties finding memories and words and bathrooms and days that her Alzheimer’s would lie silent and not interfere. On those quiescent days, she was her normal self, the self she understood and had confidence in. On those days, she could almost convince herself that Dr. Davis and the genetic counselor had been wrong, or that the last six months had been a horrible dream, only a nightmare, the monster under her bed and clawing at her covers not real.”

Quote 7: “‘Mom, what does it feel like?’

‘What does what feel like?’

‘Having Alzheimer’s. Can you feel that you have it right now?’

‘Well, I know I’m not confused or repeating myself right now, but just a few minutes ago, I couldn’t find ‘cream cheese,’ and I was having a hard time participating in the conversation with you and your dad. I know it’s only a matter of time before those types of things happen again, and the times between when it happens are getting shorter. And the things that are happening are getting bigger. So even when I feel completely normal, I know I’m not. It’s not over, it’s just a rest. I don’t trust myself.’”

Quote 8: “After a few minutes, Alice noticed that every seat at the table was occupied except for the one next to her, and people had begun taking up standing positions at the back of the room. Seats at the table were highly coveted, not only because the location made it easier to see the presentation but because sitting eliminated the awkward juggling of plate, utensils, drink, pen and notebook. Apparently, that juggling was less awkward than sitting next to her. She looked at everyone not looking at her. About fifty people crowded into the room, people she’d known for many years, people she’d thought of as family.”

Quote 9: “You’re so beautiful,” said Alice. “I’m afraid of looking at you and not knowing who you are.”

“I think that even if you don’t know who I am someday, you’ll still know that I love you.”

“What if I see you, and I don’t know that you’re my daughter, and I don’t know that you love me?”

“Then, I’ll tell you that I do, and you’ll believe me.”

Quote 10: “Accepting the fact that she did indeed have Alzheimer’s, that she could only bank on two unacceptably effective drugs available to treat it, and that she couldn’t trade any of this in for some other, curable disease, what did she want? Assuming the in vitro procedure worked, she wanted to live to hold Anna’s baby and know it was her grandchild. She wanted to see Lydia act in something she was proud of. She wanted to see Tom fall in love. She wanted one more sabbatical year with John. She wanted to read every book she could before she could no longer read.”

She laughed a little, surprised at what she’d just revealed about herself. Nowhere in that list was anything about linguistics, teaching, or Harvard. She ate her last bite of cone. She wanted more sunny, seventy-degree days and ice-cream cones.”

Quote 11: “And I have no control over which yesterdays I keep and which ones get deleted. This disease will not be bargained with. I can’t offer it the names of the US presidents in exchange for the names of my children. I can’t give it the names of state capitals and keep the memories of my husband.

…My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today doesn’t matter.”

Quote 12: “But will I always love her? Does my love for her reside in my head or my heart? The scientist in her believed that emotion resulted from complex limbic brain circuitry that was for her, at this very moment, trapped in the trenches of a battle in which there would be no survivors. The mother in her believed that the love she had for her daughter was safe from the mayhem in her mind, because it lived in her heart.”

Quote 13: “She’s said she doesn’t want to. Go ahead and ask her. Just because she has Alzheimer’s doesn’t mean she doesn’t know what she does and doesn’t want. At three in the morning, she wanted scrambled eggs and toast, and she didn’t want to go back to bed. You’re choosing to dismiss what she wants because she has Alzheimer’s”

Additional Activities

Some things Lisa Genova recommends is better sleep, healthy diet, and aerobic exercise. As a book club or friends, you could make goals to help improve these different areas of your life. Here are a few items that could encourage you with these goals.

Visit the National Alzheimer’s Association’s website. There are articles, support groups, information on the latest research and a place where you can donate to the cause.

Refreshments

With more serious and somber books, sometimes I fear posting refreshments seems too light-hearted. However, I feel that food is one way to remember and even honor others as well as highlighting important scenes in the book. Here are a few important foods from Still Alice.

• Black Coffee for John (Alice’s husband) and Tea with lemon for Alice
• Ice Cream. For the first half of the book, Alice always chose peanut butter and chocolate. For the second half of the book, Alice chose vanilla and chocolate fudge brownie ice cream.
• Bagels with cream cheese, jam, butter, and peanut butter. There is a moment where Alice forgets the word for cream cheese at breakfast, but it leads to a tender conversation with her daughter, Lydia, about how having Alzheimer’s feels. (See Quote 7 under Quotes From The Book.)