15. Alice’s doctor tells her, “…you may not be the most reliable source of what’s been going on”. Yet, Lisa Genova chose to tell the story from Alice’s point of view. As Alice’s disease worsens, her perceptions indeed get less reliable. Why would the author choose to stay in Alice’s perspective? What do we gain, and what do we lose?
Enhance Your Book Club
1. If you’d like to learn more about Alzheimer’s or help those suffering from the disease, please visit www.actionalz.org or www.alz.org.
2. The Harvard University setting plays an important role in Still Alice. If you live in the Cambridge area, hold your meeting in one of the Harvard Square cafés. If not, you can take a virtual tour of the university at www.hno.harvard.edu/tour/guide.html.
3. In order to help her mother, Lydia makes a documentary of the Howlands’ lives. Make one of your own family and then share the videos with the group.
4. To learn more about Still Alice or to get in touch with Lisa Genova, visit www.StillAlice.com.
A Conversation with Lisa Genova
What is Still Alice about?
Still Alice is about a young woman’s descent into dementia through early-onset Alzheimer’s disease. Alice is a fifty-year-old psychology professor at Harvard when she starts experiencing moments of forgetting and confusion. But, like most busy, professional people her age would, she at first attributes these signs to normal aging, too much stress, not enough sleep, and so on. But as things get worse, as things do with this disease, she eventually sees a neurologist and learns that she has early-onset Alzheimer’s.
As Alice loses her ability to rely on her own thoughts and memories, as she loses her cerebral life at Harvard, where she’d placed all her worth and identity, she is forced to search for answers to questions like “Who am I now?” and “How do I matter?” As the disease worsens and continues to steal pieces of what she’d always thought of as her self, we see her discover that she is more than what she can remember.
What inspired you to write Still Alice?
There were a few things, but the main one was my grandmother had Alzheimer’s in her eighties. Looking back, I’m sure she’d had it for years before our family finally opened our eyes to it. There’s a level of forgetting that’s considered normal for aging grandparents, so you let a lot go by. By the time we were caring for her, she was pretty far along into the disease. And it hit us hard. She’d always been an intelligent, independent, vibrant, and active woman. And we watched this disease systematically disassemble her. She didn’t know her kids’ names, that she’d even had them (she had nine), where she lived, to go to the bathroom when she needed to, she didn’t recognize her own face in the mirror. I used to watch her fuss over these plastic baby dolls as if they were real babies. It was heartbreaking. And yet, I also found it oddly fascinating. I was in graduate school at the time, getting my Ph.D. in neuroscience at Harvard. And so the neuroscientist in me wondered what was going on in her brain. We could see the results of the destruction on the outside. I wondered about the chains of events that were causing the destruction on the inside. And I wondered what it must be like when those parts of the brain that are responsible for your own awareness and identity are no longer accessible. I kept wondering: What is having Alzheimer’s disease like from the point of view of the person with Alzheimer’s? My grandmother was too far along to communicate an answer to this question, but someone with early-onset, in the early stages, would be able to. This was the seed for Still Alice.
Did your professional background help in the writing of Still Alice?
Yes, it did. I think the most important way it helped was, over and over again, it gave me access to the right people to talk to. The Ph.D. in neuroscience from Harvard was like a golden, all-access pass. From the clinical side—the chief of neurology at Brigham and Women’s Hospital in Boston, neuropsychological testing at Mass General, genetic counselors, caregiver support group leaders, and the world’s thought leaders in Alzheimer’s research, to the patient side—people living with disease and their caregivers, my professional background and credentials gave people the assurance they needed to feel comfortable letting me in and revealing what they know.
And, in my conversations with physicians and scientists, having an understanding of the molecular biology of this disease certainly gave me the knowledge and the vocabulary to ask the right kinds of questions and the ability to understand the implications of their answers.
How did you get involved with the National Alzheimer’s Association?
Before Still Alice was even published, it seemed to me that I’d created a story that, although fictional, was in fact a truthful and respectful depiction of life with Alzheimer’s. And it was unique in that it presented this depiction from the point of view of the person with Alzheimer’s, rather than the caregiver. The lion’s share of information written about Alzheimer’s is from the point of view of the caregiver.
So I thought the Alzheimer’s Association might be interested in the book in some way, perhaps endorsing it or providing a link to it from their website. I contacted their marketing department and gave them the link to the book’s website, which I’d also created before the book was published. They responded by saying that they don’t normally consider “partnering” with books, but they asked for a copy of the manuscript. Soon after that, their marketing rep contacted me, saying they loved the book. They wanted to give it their stamp of approval and asked if I would write the blog for the nationwide Voice Open Move campaign they were launching at the end of that month.
That really forced me to make a decision about the book. Still Alice wasn’t published yet. It could take years for it to find a publishing house and become available to readers. Realizing that I’d created something that the Alzheimer’s Association thought was valuable, that could help educate and reassure the millions of people trying to navigate a world with Alzheimer’s, I felt an urgent responsibility to get the book out immediately. So I said yes to the blog and yes to the affiliation. I then self-published Still Alice. It was an opportunity I couldn’t pass up.
How did you decide what information was crucial to include in Still Alice?
I knew I’d never be able to capture everyone’s experience with Alzheimer’s. But I knew I could capture the essence of it. And I checked in regularly with people who have early-onset Alzheimer’s to make sure it all rang true. They were my litmus test. The earliest symptoms were important to portray, to show how they are deflected and denied. I felt a duty to show what the diagnosis process should look like. For so many people with early-onset, the road to a diagnosis of Alzheimer’s is long and incredibly arduous, the symptoms often mistaken for other potential culprits, like depression, for years. This is probably the only place in the book I deviated from representing the truth as it plays out for most people. I gave Alice a straight-and-narrow shot to diagnosis, both in the interest of providing an example of what should happen and of creating a story that wasn’t five hundred pages long. I also felt it was important for Alice to consider suicide. I thought long and hard about the decision to include this. As with the death penalty or abortion, people have very strong opinions about the right to end your own life when faced with a terminal illness, and I didn’t want to alienate any readers. But I found that everyone I knew diagnosed with Alzheimer’s under the age of sixty-five had considered suicide. That’s extraordinary. The average fifty-year-old doesn’t think about killing himself, but every fifty-year-old with Alzheimer’s does. This is where this disease forces you to go. So I felt Alice had to go there as well.