Bestselling author talks about Alzheimer’s and aging

By Stephanie Novak and Brooke Workneh

Harvard-trained neuroscientist Lisa Genova broke into fiction after watching the progression of her grandmother’s Alzheimer’s disease. In a talk at Northwestern University Tuesday, Genova discussed Alzheimer’s and aging and the inspiration behind her bestselling novel, “Still Alice.” Before the program, we spoke with the author about the book she based on her grandmother’s illness. Genova continues to merge neuroscience and fiction in her novels, she said. Her lecture, followed by a panel discussion, was sponored by the Chicago Council on Science and Technology. Genova lives in Cape Cod with her husband and three children.

Q: What is the link between Alzheimer’s and “Still Alice,” your first novel?
A: I am here to talk about why I care about Alzheimer’s and why writing fiction was a way to understand Alzheimer’s better. My background is in neuroscience, I used to do brain research and my grandmother had Alzheimer’s. I found that understanding the neuroscience of Alzheimer’s didn’t do nearly enough to help me understand what my grandmother was going through, and what I really wanted to understand was what it felt like to have this from her perspective. And that was really the seed for the book.

Q: Could you elaborate more on your grandmother and talk about your inspiration behind the book?
A: My grandmother was in her 80s when she developed symptoms of dementia and I think that we were like a lot of families in that we assumed that her forgetfulness was a normal part of normal aging and so we let go, ‘Oh, Nana’s just getting old.’ Then, as things do with Alzheimer’s, they get worse and as it got worse we realized, ‘Oh my God. This could not possibly be normal forgetting or normal aging, something’s really wrong.’ And, in fact, it was Alzheimer’s. I lived near my grandmother when she had Alzheimer’s and I was around to witness this disease, sort of systematically disassemble her. It was heartbreaking and baffling and unnerving and really difficult especially for my aunts who were her primary care givers to continue to as the ground keeps shifting, because it’s a disease that keeps moving, it doesn’t really stabilize for very long typically. It was hard to stay connected to my grandmother and for her to stay connected to us. As she forgot her personal history and the ways in which she knew all of us how could we still have a relationship with her where she understood that we loved her and that she could trust us and love us even if she didn’t know who we were.

Q: Would you consider the final act of completing the book an act of advocacy for Alzheimer’s patients and helping people to understand what they’re going through?
A: I set out to write a story to better understand my grandmother, sort of in her honor. I began the book in 2004 and she passed away in 2002. But as I did the research for the book and was writing it and came to know so many people with early on-set and early stage Alzheimer’s, because that was part of the research, getting to know the real experts, the people who are living with Alzheimer’s, I realized that if I did a good job, if I listened well and wrote a really compelling story that captured the essence of what it feels like to have this, then the book would have an opportunity to help people better understand this disease that everybody’s terrified of, and to start talking about it.
I recognized early on that this was a way in to get people to start talking about this thing that they’re terrified to talk about, sort of dragging Alzheimer’s out of the closet and into people’s living rooms where they can discuss it over book club and a glass of wine. And suddenly everyone in the room realizes that they all know someone with this disease. They’re all struggling with it alone instead of collaborating and talking and having empathy for each other, and realizing that this is a huge problem that’s affecting tons of people. We need to start letting Washington know that this is a huge problem and that we don’t all have to empty out our individual savings accounts to help our individual family members. There are ways we can get resources and support through places like the Alzheimer’s Association, [and other support groups]. It’s been [an] amazing vehicle for allowing people [to] have sort of the courage to begin to talk about this really scary topic.

Q: What would you hope that your book achieves to help Alzheimer’s patients, or those who are afraid to talk about it, as you’ve mentioned?
A: For that one person who picks up the book and realizes my God, my dad’s still in there and if I show up to see him and he recognizes the love in my eyes or the sound of my voice, that it’s a caring one and that I make that hour an enjoyable one for him, he might forget it when I leave, but that doesn’t mean that hour didn’t matter. If I can give that to each individual person through the book, that is a huge accomplishment, in and of itself.
On a bigger scale I hope the book is part of what brings us to a cure. We should be able to cure all Alzheimer’s. We understand the molecular criminals that cause this disease and scientists are really closing in on how to make treatments that are safe and effective and specific enough to stop the progression of this disease. I hope the that the book with its million plus copies floating out there and everybody lending theirs out to everyone they know, that it’s spreading the word in a way that people are starting to sort of express the urgency of this problem.

Q: Your degree is in neuroscience, but now of course you’ve forayed into writing as well. What does the future look like for you in terms of balancing those two things? Will you focus on writing or neuroscience, or both?
A: I don’t do brain research anymore. I’m a full time novelist. All of my books have something to do with the brain. My second book, [“Left Neglected”] was about a traumatic brain injury. My third book [“Love Anthony”] was about a boy with autism. The book I’m working on now is about Huntington’s disease. And so, with all of my books I hope to portray a disease or condition that is typically ignored, or feared, or misunderstood, and bring it into the light and let people learn a little bit about it and hopefully develop some sensitivity and some empathy for those people who are going through that experience.

Q: The common thread is that you seem to humanize a lot of these diseases. You mentioned Huntington’s disease is very disconcerting with uncontrolled movements caused by nerve cells degenerating in some areas of the brain.
A: Absolutely, and most people don’t know anything about it. I saw the power of what “Still Alice” has been able to do and it’s incredibly rewarding to have written this book that is helping so many people understand it in a human way, and it’s really gratifying, so I’m going to keep doing that.

Q: Did you find that your writing is more gratifying than the neuroscience research that you were doing or do they complement one another?
A: The passion begins with neuroscience. How does the brain work? And what’s going wrong when you can’t remember a word or a name? or what’s going on when your brain has had a traumatic brain injury and it’s trying to recover, how does it do that? How does our personality and our memory and our moods and our desires reveal who we are and our identity and our sense of self and consciousness and I am interested in a passionate way in all of that, and so it begins there. It’s a nice fusion between those two very different careers if you will in brain research, and writing fiction. It’s an incredibly rewarding marriage.

Q: Your book has been turned into a stage adaptation and will debut in the spring at Lookingglass Theatre, how did that come about?
A: We’re thrilled! I can’t wait to see it come alive on the stage. Actually while I was writing “Still Alice,” I was training as an actress in Boston in the Meisner technique [a type of acting that develops improvisational skills]. I did that for a year and a half and I acted on stage in Boston for quite a while and so it’s particularly thrilling for me to imagine “Still Alice” on the stage. We sold the stage rights to Lookingglass Theatre, I can’t remember how long ago now, but I’ve seen the script and it’s fantastic. I will be here on opening night.

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