Joe O’Brien is a 44-year-old Boston cop. He and his wife, Rosie, live with their four adult kids in a triple-decker in Charlestown, along with his oldest son’s wife.
Joe starts to notice that he’s having some slight problems: He drops a pitcher while pouring water, he trips on stairs, and it seems to take him longer than usual to fill out his reports at work. And his temper is getting out of hand — so much so that Rosie urges him to see a doctor.
Rosie was right to insist. A neurologist diagnoses Joe with Huntington’s disease. The nerve cells in his brain are progressively breaking down. He will have increased problems with movement and thinking. He can expect psychiatric problems, too.
There is no treatment and no cure. And to make matters worse, each of his children has a 50 percent chance of inheriting the disease, which typically develops in a person’s 30s or 40s. There’s a test they can take that will tell them if they are gene positive.
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Inside the O’Briens, a novel by Lisa Genova, takes readers into the uprooted lives of a family struggling to deal with a lethal disease. While Joe tries to cope with his rapidly declining health, his children struggle to decide if they should learn what the future holds for each of them, too.
Genova is a neuroscientist who became a New York Times bestselling author with her first book, Still Alice, the story of a woman with Alzheimer’s. That book became a movie, which debuted this past January and won Julianne Moore an Oscar in February.
This is Genova’s fourth novel. Her second and third — Left Neglected and Love Anthony — also became bestsellers. She travels the globe as a speaker, bringing awareness to the topics of her novels — Alzheimer’s, traumatic brain injury and autism — and raising money for research.
The Cape Cod, Mass.-based author, who also appears frequently on television and radio, including The Dr. Oz Show and The Diane Rehm Show, took time out of her busy schedule to talk with us about her newest book, her work, stress relief and what it’s like to walk Hollywood’s most famous red carpet.
You have a Ph.D. in neuroscience from Harvard and you’re also a bestselling novelist. Your first novel, Still Alice, was on The New York Times bestseller list for 41 weeks, and of course, was recently made into a movie starring Julianne Moore. How did you make the leap from science to creative writing? Where did that original inspiration come from?
My grandmother was diagnosed with Alzheimer’s when she was 85, but she had likely been living with the disease for many years before this. Like a lot of families, we erroneously expected a certain amount of forgetting to be a normal part of normal aging. So we brushed off her symptoms of dementia to “Nana’s getting old.”
It was heartbreaking to watch this disease disassemble her — to watch her forget who we were, to see her not recognize her own home, her own reflection in the mirror.
I did a lot of reading to better understand what she was going through, to better understand what it must feel like to have this. But everything I read, from highly scientific research articles to self-help books, was written by a scientist, a healthcare professional, or a caregiver.
They were all views from the outside looking in. I wanted to understand this disease from the inside out. What does it feel like to have Alzheimer’s? That question was the seed for Still Alice.
What was it like having Still Alice made into a major motion picture? Were you part of the script-writing process? And what was the red carpet experience at the Oscars like?
Thrilling and surreal. I’m not a screenwriter and have the humility to know I don’t yet possess that skill set. I gave feedback on many drafts of the script, but I didn’t write it.
The script was written by Wash Westmoreland and Richard Glatzer. They did a brilliant job. They were incredibly faithful to both the narrative and the subjective point of view of Alice. I’m so grateful and proud of them.
The Oscars — I still keep saying to myself, “That happened!” Being there was magical. I kept thinking of my nana all night. This all started with her. And now Julianne Moore has an Oscar! So unbelievable.
In Inside the O’Briens, you tell the story of a family that learns that they have a genetic history of Huntington’s disease. Why did you decide to focus on HD? (And when was HD discovered? I feel horrible that I didn’t know anything about it before I read the book.)
HD was once called “the magrums” and then “St. Vitus’ Dance” and then “hereditary chorea” by George Huntington in 1872. In 1972, the name was changed from Huntington’s chorea to Huntington’s disease.
Why did I decide to write about HD? 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 erupting into celebration. 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.
Joe O’Brien is just 44 when he learns he has Huntington’s and that each of his four children have a 50 percent chance of inheriting this untreatable, incurable fatal disease. Each of the children tries to decide if they want to be tested. Can you explain why this was an important part of the plot?
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? HD is a family disease. Telling only the story of the person diagnosed wouldn’t be telling the whole story.
This book had me weeping and laughing — I really felt a connection with Joe’s 21-year-old daughter, Katie. What kind of research did you do to try to get inside the minds and emotions of people who are grappling with this illness in their families?
As with all my books, I do a lot of research with the goal of writing informed fiction, telling the truth under imagined circumstances. I came to know a lot of people, many families living with HD, and they shared their experiences with me.
Katie finds a way to center herself through yoga, which she teaches. You note in the acknowledgments that you enrolled in 200 hours of yoga teacher training while working on the book so you could understand your character better. Please tell us about why you chose yoga and about this process of understanding Katie.
I’ve been practicing yoga since 2001. The practice of being present, quieting the mind’s worried chatter, the metaphors within the physical practice that teach surrender and strength — without an effective medical treatment or cure, these are the kinds of tools Katie uses to face HD.
This book is also about Boston and its police force and emergency responders. The reader is immersed in the world of the Irish Catholics in Charlestown. How or why did you choose to put the story in this corner of the world?
I chose to set the story in Charlestown as a nod to the scientists who discovered the HD gene.
You’ve traveled across the globe speaking about Alzheimer’s disease, autism and traumatic brain injury and undoubtedly will now be speaking about Huntington’s. At the end of the novel, you give readers a call to action, asking them to join you in raising awareness and donating money to HD research. What kind of response have you gotten?
The response has been enormous and deeply moving. It’s exciting to give readers something actionable to do after finishing the book, a way to get involved and make a positive difference in the lives of people living with Alzheimer’s, traumatic brain injury, autism or HD.
Have you started your next novel, and if so, what will the focus be?
I haven’t started yet, but it will be about ALS.
You’ve taken on a lot of wonderful, big causes. What do you do for your own stress relief? What keeps you centered and happy?
Yoga, dance, the love of my family and friends, and a good night’s sleep.
Inside the O’Briens
by Lisa Genova
Gallery Books, $26
Audiobook: Simon & Schuster Audio, $34.99; narrated by actor Skipp Sudduth.