Genova speaks of empathy as a path to understanding

As a neuroscientist, Lisa Genova’s scientific knowledge of Alzheimer’s disease is naturally much greater than the average person. But last week, in front of a large UB Distinguished Speakers Series crowd, she admitted she lacked a full understanding of the disease when her grandmother was affected by it.

Genova, who graduated from Harvard in 1998 with a PhD in neuroscience, told the audience in the Center for the Arts that she understood what her grandmother was going through from a scientific level, but she didn’t know how to sit in the same room as her.

“Without adding empathy, my understanding of Alzheimer’s was limited,” she said. “Even armed with my PhD in neuroscience from Harvard and all of this education, I still didn’t know how to be with my grandmother. I could relate to her as a neuroscientist, but I had no clue how to relate to her as a granddaughter.”

Finding that empathy for her now-deceased grandmother was a struggle for Genova. As much as she scoured the resources available to her, there was very little that detailed the experience of a person with the disease, which led to her second career as an author.

“For me to really understand the brain, being a neuroscientist wasn’t enough; I had to become a storyteller,” she said. “I’m interested in understanding neurological diseases and conditions like Alzheimer’s, autism or ALS. Learning the anatomy, the physiology and the biology are only going to get me so far. What happens if I take that scientific and textbook knowledge, and add onto it the story of a person living with (those diseases)?”

After writing for more than a year during the most tumultuous time of her life, Genova self-published “Still Alice” in 2007. The novel presented a Harvard professor’s point of view of suffering from early-onset Alzheimer’s. Two years later, the book was picked up by publishing company Simon & Schuster and was a New York Times bestseller for more than 40 weeks. It even received a film adaptation starring Julianne Moore.  

Genova said writing the novel gave her a chance to humanize Alzheimer’s and that she learned how important empathy was to understanding the disease. 

“Going from scientific and medical information to story is like going from black and white to technicolor.

“If we’re willing to learn through empathy, I’ve found that learning about people living with neurological conditions can teach us profoundly meaningful life lessons about our shared human condition,” she said.

She showed the audience what she meant with a pair of examples. First, she gave the exact definition for the word “caregiver” and said it didn’t convey any emotional feeling. She followed that up by showing a Gillette advertisement that focused on the story of a son being a caregiver to his father, who suffered lasting effects from a stroke.

Genova said the advertisement’s story was a powerful one and it gave the audience a chance to walk in someone else’s shoes — it had the magic ingredient of empathy.

She’s written four other bestselling novels since “Still Alice,” portraying characters with conditions ranging from ALS to autism to showcase the importance of showing compassion and understanding of another person’s experiences.

Genova then turned to how the human connection can be maintained once the empathy is there, even if the other person has Alzheimer’s and may never remember the interaction. She learned this when she took acting classes and covered the improvisational comedy tactic of “Yes, and …,” in which the participant accepts the other’s statement and expands that line of thinking.

“Yes and … is a way of taking on their perspective, agreeing to their sometimes admittedly bizarre reality and joining them where they are,” she said. “That way you can stay in a relationship and stay connected.

“Human emotion and connection cannot be destroyed by Alzheimer’s. (It’s not a disease) that wipes out the whole brain. Alzheimer’s does not kill off the ability to feel love, loneliness, joy, sadness, anger or peace.”

Instead of shutting out a false reality, Genova said joining someone with Alzheimer’s and keeping company with them in that scenario can be beneficial for both parties. It’s a feeling that someone with Alzheimer’s won’t forget, even if they forget the specific interaction. 

“We don’t have a cure for Alzheimer’s yet, but we can do something about the alienation, the isolation, the stigma and the shame that is layered onto having this disease,” she said.

As for finding a cure for the disease, Genova is helping to lead the charge. Through the XPRIZE Foundation of Peter Diamandis, last month’s UB distinguished speaker, her team received top honors at the XPRIZE Visioneers Summit. She will now help develop a competition to find a way to detect the presence of Alzheimer’s before symptoms occur.

But for now, Genova encourages people to seek empathy to not only understand those with diseases like Alzheimer’s, but to understand people in general. She also said conversations geared toward understanding people and their backgrounds can fuel social change.

“Empathy and conversation are the tools we can have to understand, to see yourself and the other, to understand someone with Alzheimer’s, ALS or autism,” she said. “It doesn’t just have to be somebody with neurological diseases and conditions. Story, empathy and conversations are seeing yourself in the other, whether that’s someone from another country or culture, or somebody that believes in a different religion or political party.

When you’re trying to understand anything, I invite you to ask, what’s the story? What’s his story? What’s yours?”