'Still Alice' Author: In The Absence Of A Cure, Empathy Is Key
Author Lisa Genova takes her readers into the minds of other people. In “Still Alice” it's the mind of an accomplished neuroscientist diagnosed with early onset Alzheimer's Disease. Genova’s readers experience Alice’s struggles with daily life as routine tasks such as finding her way home suddenly become unfamiliar. Eventually, Alice loses bigger things – the names of family members and knowledge of relationships.
Bethany Chafin spoke with the author of WFDD's Fall Book Club read, “Still Alice.”
On the inspiration for "Still Alice," and why she chose fiction to tell this story:
When my grandmother had Alzheimer's I found that I had a really hard time staying connected to her. And she lost access to all of the history that connected us. She didn't know who I was. She didn't know who any of us were.
She had nine children and thirty-something grandchildren, and she didn't remember her married name, she didn't remember who we were. And while I could have great sympathy for her and us - I felt bad for her, I was heartbroken, it was frustrating and upsetting - there's a big difference between sympathy and empathy. Sympathy is feeling for someone, and there can be a great distance between us. You know, 'she has Alzheimer's and she's sort of way over there and I can feel for her and we're separated. I don't really see myself in her.' But with empathy you feel with someone, and it collapses all that distance.
And then I can put myself in her shoes. I had that intuitive "aha" moment of, 'Oh! Fiction is a place where you can explore empathy and walk in someone else's shoes.'
Empathy is the key. In the absence of a cure, this is what we want. We want to stay connected to our loved ones. We want to bring people sort of back into community, back into relationship. We don't want to lose that connection.
On what she learned as a neuroscientist while writing "Still Alice:"
My focus as a neuroscientist was primarily on the molecular neurobiology of drug addiction. So I could read everything about the current knowledge of what we understand about the neuroscience of the disease [Alzheimer's], but beyond that I didn't really know much of anything, and it was in the research for the book that I shadowed neurologists and sat in on neuropsych testing and interviewed genetic counselors and general practice physicians. And then I came to know 27 people living with early-stage and early-onset Alzheimer's.
And so I really gained a sort of 360 degree view of this disease which most people don't have.
And the goal the whole time was to try and understand what it feels like to live with Alzheimer's from the perspective of the person who has it. And that was something that really wasn't available in the literature.
On the importance of "emotional memory:"
I come across so many people who are really disheartened. It's a marathon of a journey when you love someone with Alzheimer's, and oftentimes toward the end of this disease your mother or your father or your spouse ends up in an assisted living facility. And I often hear people say, 'Well, you know, I haven't been to visit my dad in a while but you know he doesn't remember who I am anymore and so you know it doesn't really matter if I go or not. He doesn't know who I am and won't remember that I was there.'
And I get that. And yet what I try to help people understand is that while he might not remember what you said when you visit with him and he might not know your name or the history of who you are in relation to him, he'll remember how you made him feel.
And we all go through this, this idea that your emotional memory sort of outlasts what was said. And the examples I often give people are if you've ever had a fight with someone in the morning and you're really upset. It can be hours later or the afternoon and you're still really upset and you might not even remember exactly what was said.
And on the flip side if you have a very loving, amazing exchange with someone in the morning, you can still be, you know, your heart full and flying high through the whole day.
...I call that the emotional memory. The physiological emotional response of being connected to someone with Alzheimer's still matters.
And that feeling isn't wasted and isn't forgotten when you have that emotional connection with someone.
Lisa Genova will be speaking at the Greensboro Coliseum on Wednesday, October 25th as part of the Guilford College Bryan Series.