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Interview: April 8, 2015

Earlier this year, Lisa Genova proudly watched Julianne Moore win an Academy Award for playing the lead in the big screen adaptation of her New York Times bestselling novel, STILL ALICE. Her latest book, INSIDE THE O’BRIENS, sheds light on another disease --- Huntington’s --- and the heartbreaking effect it has on one family. She has a background in neuroscience and is known for her masterful handling of the human aspects of illness. In this interview with’s Norah Piehl, Genova talks about what initially inspired her to write from the perspective of the patient and how she is able to achieve such poignantly empathetic narratives (hint: tons of first-person research!). In your previous novels --- STILL ALICE, LOVE ANTHONY and LEFT NEGLECTED --- your characters have had to deal with early-onset Alzheimer's, autism and traumatic brain injury. Your new novel centers on how a diagnosis of Huntington's disease affects a family. What made you choose to concentrate on Huntington's in INSIDE THE O’BRIENS?

Lisa Genova: My first year out of college, I worked as a lab technician in a neurobiology lab researching drug addiction. I was 22 years old in February 1993 when the scientists down the hall began celebrating. They had just isolated the genetic mutation that causes HD. I remember getting very still, the goosebumps on my arms, knowing I was witnessing a historic moment in all of neuroscience. Only one thing causes HD, and these scientists had just discovered it. Surely, there would be a cure for HD. We are now 22 years later, and we still don’t have a treatment or cure. I wrote INSIDE THE O’BRIENS to hopefully create some much-needed awareness and urgency about a disease most people know little about.

BRC: Issues of genetics and heredity loom large here. Do you find that people are more preoccupied with these concerns as they learn more about the heritability of diseases and the associated risks?

LG: The discovery of the genetic mutation for HD made genetic screening possible, and so every generation within an HD family “at risk” is burdened with an incredibly complex question: Do you want to know if you carry the mutation? A diagnosis of HD in family forces a crash course in genetics upon everyone involved, and so yes, the concern over being HD positive looms large over everyone.

BRC: Your books have taken place in various towns and suburbs around Boston. You decided to set INSIDE THE O’BRIENS in a working-class Boston neighborhood, and your protagonist is a police officer. Why did you choose to focus on this setting and background for the novel?

LG: I chose to set the story in Charlestown as a nod to the scientists who discovered the HD gene. This neighborhood is predominantly populated by the Townies --- generations of blue-collar, Irish Catholics.

BRC: Your novel is written from two points of view: Joe, the middle-aged Boston cop with Huntington's, and his 21-year-old daughter, Katie. Whose perspective was more challenging to capture?

LG: I loved writing both. I came to know a Boston police officer and was in touch with him almost every day while writing the book, so that really helped with hearing Joe’s voice. I loved writing him, from the point of view of a man. It was such fun not having to be polite about anything! Katie was easy in many ways because I’m also a yogi. I’ve been practicing yoga since 2001, and while I was writing this story, I did a 200-hour yoga teacher training. So her yoga tools were also at my fingertips. I grew up in Waltham, MA, which back then was mostly blue-collar Irish and Italian, so I felt right at home with the O’Briens.

BRC: INSIDE THE O'BRIENS isn't just a chronicle of an illness, it's also a portrait of a family in crisis. What kinds of more universal lessons do you think readers might take from the O'Briens' story?

LG: This story is about what’s inside us and what gets passed down through the generations --- not just our DNA, but also our faith, humor, resilience, love. It’s about how to find hope in a situation that appears hopeless. It’s about finding courage when you’re completely vulnerable. It’s about learning to live in the moment. The future is a fantasy --- the present moment is what is real.

BRC: How much research do you need to conduct to write compellingly about your subjects? How do you go about doing the research for your novels?

LG: I read many books on HD and attended the HDSA annual conference. I interviewed neurologists and genetic counselors. I came to know people affected by HD --- people who are HD positive but not symptomatic, people who are symptomatic at different stages, people who are HD negative, people who don’t want to know their gene status, mothers and spouses and sisters and husbands. This is a family disease, so it was important to understand everyone’s perspective.

I came to know Townies and Toonies. I interviewed five police officers. I earned my 200-hour yoga teacher certification. I spoke with dancers at the Boston Ballet.

BRC: In your acknowledgments, you thank Danny Wallace, your consultant in the Boston Police Department. What was it like to get to know him? What was the most surprising thing you learned about the Boston PD? 

LG: Danny Wallace was a total stranger to me in May 2013, and he is now one of my dearest friends on this planet. I really had little understanding or appreciation for what law enforcement officers do before writing this book. My knowledge was based entirely on episodes of shows like “NYPD Blue” and movies. My eyes are wide open now. Like Joe says in the book, “Once you can imagine these things, you can’t unimagine them.” I see the enormous sacrifices officers and their families make. They’re on duty on Christmas and Easter and miss soccer games and dance recitals. They never know what they’re going to encounter on any given day, and they bravely face whatever unfolds to protect us. They endure physical and emotional burdens and abuses that make me want to weep when I think about them. In addition to raising awareness about Huntington’s, I also hope this book gives readers an appreciation for what police officers do.

BRC: Tell us about Readers in Action-HD. How did this project come about? Where can readers find out more about this?  

LG: Readers in Action-HD is a direct way for readers to get involved and contribute, as a readership, to the HD Human Biology Project. If a million people read INSIDE THE O’BRIENS and everyone makes even a small donation, this collective contribution will make a huge impact. Everyone can be part of the progress that will lead to the cure.

BRC: You've successfully used your previous novels to raise awareness and to elicit action around the conditions they depict. As a novelist who's also a scientist, how do you view your own role as educator and activist around these issues?

LG: I could be doing brain research or writing nonfiction, but I’ve found that fiction is a powerful way in. Stories are accessible. Most people aren’t going to read the Journal of Neuroscience to learn about Huntington’s disease, but they might read a novel called INSIDE THE O’BRIENS. So my role is to tell the truth under the imagined circumstances of my novels, to write informed fiction, to give people real medical information, but to package it in a human story that we can all relate to.

BRC: Readers may have a lot of questions about Huntington's disease after finishing your book. What print or online resources would you recommend for them to learn more?


BRC: You have a doctorate in neuroscience. What led you to turn your attention to fiction?

LG: My nana had Alzheimer’s. Everything I read to understand her illness was scientific, clinical, or of the self-help genre. It was all informative, yet everything was written by the perspective of an outsider --- a clinician, a scientist, a caregiver, a social worker. What about the perspective of the person who has it? What does it feel like to have Alzheimer’s? This question was the seed for STILL ALICE. Answering that question has changed my life.

BRC: The movie adaptation of STILL ALICE won numerous awards this year. What was it like to watch Julianne Moore accept the Academy Award for playing a character you created?

LG: Magical and surreal. I was so proud of her, so grateful to the work and talent she dedicated to that role, to all the people involved in making the film. I was, of course, thrilled and teary, thinking of my nana. This all started with her.

BRC: Have you decided on the topic of your next novel? Can you give us some hints as to what it's about and when it might be released?