We’re delighted to visit with Lisa Genova today as she shares about her latest novel, INSIDE THE O’BRIENS. Newly released in paperback, it is another heartbreaking, illuminating, beautiful look at a life-altering disease. If you loved STILL ALICE, you’ll adore this one as well.
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 Huntington’s Disease. I remember getting very still, with goose bumps 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 23 years later, and we still don’t have a treatment or a cure.
I believe that fiction is a powerful way in. Stories are accessible. Unless you’re a geeky neuroscientist like me, you’re probably not going to read the Journal of Neuroscience to learn about Huntington’s disease. But you might read a novel called Inside the O’Briens (and I hope you do!). My role is to tell the truth under the imagined circumstances of my novels, to write informed fiction, to give you real medical information, but to package it in a human story that we can all relate to. I wrote Inside the O’Briens to hopefully create some much needed awareness about a disease most people know little about.
And I’ve found that awareness and conversation are critically necessary steps in the march toward treatments and survivors. Historically, we’ve seen this with cancer and HIV. Awareness, open conversation, lifting the shame, secrecy, and stigma, acknowledging that the disease exists are essential to developing treatments that lead to survivors. It’s impossible to cure something that seemingly doesn’t exist. A sense of urgency is needed. We’re seeing this urgency happen with Alzheimer’s, a disease we’ve all been terrified to openly talk about. Still Alice is playing a role in this, acting as a vehicle for conversation, for breaking down isolation and fear.
Inside the O’Briens is about Huntington’s, but it’s also about what’s inside us and what gets passed down through the generations—not just our DNA, but also our faith, humor, resilience, love, gratitude. 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.
From award-winning, New York Times bestselling author and neuroscientist Lisa Genova comes a “heartbreaking…very human novel” (Matthew Thomas, author of We Are Not Ourselves) that does for Huntington’s disease what her debut novel Still Alice did for Alzheimer’s.
Joe O’Brien is a forty-three-year-old police officer from the Irish Catholic neighborhood of Charlestown, Massachusetts. A devoted husband, proud father of four children in their twenties, and respected officer, Joe begins experiencing bouts of disorganized thinking, uncharacteristic temper outbursts, and strange, involuntary movements. He initially attributes these episodes to the stress of his job, but as these symptoms worsen, he agrees to see a neurologist and is handed a diagnosis that will change his and his family’s lives forever: Huntington’s disease.
Huntington’s is a lethal neurodegenerative disease with no treatment and no cure, and each of Joe’s four children has a 50 percent chance of inheriting their father’s disease. While watching her potential future in her father’s escalating symptoms, twenty-one-year-old daughter Katie struggles with the questions this test imposes on her young adult life. As Joe’s symptoms worsen and he’s eventually stripped of his badge and more, Joe struggles to maintain hope and a sense of purpose, while Katie and her siblings must find the courage to either live a life “at risk” or learn their fate.
Praised for writing that “explores the resilience of the human spirit” (The San Francisco Chronicle), Lisa Genova has once again delivered a novel as powerful and unforgettable as the human insights at its core.