Inside the O'Briens
A Novel
By Lisa Genova
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Table of Contents
About The Book
A New York Times bestseller ▪ A Library Journal Best Books of 2015 Pick ▪ A St. Louis Post-Dispatch Best Books of 2015 Pick ▪A GoodReads Top Ten Fiction Book of 2015 ▪ A People Magazine Great Read
From 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” (San Francisco Chronicle), Lisa Genova has once again delivered a novel as powerful and unforgettable as the human insights at its core.
From 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” (San Francisco Chronicle), Lisa Genova has once again delivered a novel as powerful and unforgettable as the human insights at its core.
Excerpt
Inside the O'Briens
CHAPTER 1
Damn woman is always moving his things. He can’t kick off his boots in the living room or set his sunglasses down on the coffee table without her relocating them to “where they belong.” Who made her God in this house? If he wants to leave a stinking pile of his own shit right in the middle of the kitchen table, then that’s where it should stay until he moves it.
Where the fuck is my gun?
“Rosie!” Joe hollers from the bedroom.
He looks at the time: 7:05 a.m. He’s going to be late for roll call if he doesn’t get the hell out of here pronto, but he can’t go anywhere without his gun.
Think. It’s so hard to think lately when he’s in a hurry. Plus it’s a thousand degrees hotter than hell in here. It’s been sweltering for June, in the high eighties all week, and barely cools down at night. Terrible sleeping weather. The air in the house is a thick swamp, today’s heat and humidity already elbowing in on what was trapped inside yesterday. The windows are open, but that doesn’t help a lick. His white Hanes T-shirt is sticking to his back beneath his vest, pissing him off. He just showered and could already use another.
Think. He took a shower and got dressed—pants, T-shirt, Kevlar vest, socks, boots, gun belt. Then he took his gun out of the safe, released the trigger lock, and then what? He looks down at his right hip. It’s not there. He can feel the missing weight of it without even looking. He’s got his magazine pouch, handcuffs, Mace, radio, and service baton, but no gun.
It’s not in the safe, not on his dresser, not in the top drawer of his dresser, not on the unmade bed. He looks over at Rosie’s bureau. Nothing but the Virgin Mary centered on an ivory doily. She sure ain’t going to help him.
St. Anthony, where the fuck is it?
He’s tired. He worked traffic detail last night over at the Garden. Friggin’ Justin Timberlake concert got out late. So he’s tired. So what? He’s been tired for years. He can’t imagine being so tired that he would be careless enough to misplace his loaded gun. A lot of guys with as many years on the force as Joe grow complacent about their service weapon, but he never has.
He stomps down the hall, passes the two other bedrooms, and pokes his head into their only bathroom. Nothing. He storms into the kitchen with his hands on his hips, the heel of his right hand searching for the top of his gun out of habit.
His four not-yet-showered, bed-headed, sleepy teenagers are up and seated around the tiny kitchen table for breakfast—plates of undercooked bacon, runny scrambled eggs, and burnt white toast. The usual. Joe scans the room and spots his gun, his loaded gun, on the mustard-yellow Formica counter next to the sink.
“Mornin’, Dad,” offers Katie, his youngest, smiling but shy about it, sensing that something is off.
He ignores Katie. He picks up his Glock, secures it in its holster, and then aims the crosshairs of his wrath at Rosie.
“Whaddaya doin’ with my gun there?”
“What are you talking about?” says Rosie, who is standing by the stove in a pink tank top and no bra, shorts, and bare feet.
“You’re always movin’ my shit around,” says Joe.
“I never touch your gun,” says Rosie, standing up to him.
Rosie is petite at five feet nothing and a hundred pounds soaking wet. Joe’s no giant either. He’s five feet nine with his patrol boots on, but everyone thinks of him as being taller than he is, probably because he’s barrel-chested and has muscular arms and a deep, husky voice. At thirty-six, he’s got a bit of a gut, but not bad for his age or considering how much of his life he spends sitting in a cruiser. He’s normally playful and easygoing, a pussycat really, but even when he’s smiling and there’s that twinkle in his blue eyes, everyone knows he’s old-school tough. No one messes with Joe. No one but Rosie.
She’s right. She never touches his gun. Even after all these years of his being on the force, she’s never grown comfortable with having a firearm in the house, even though it’s always in the safe or in his top dresser drawer, where it’s trigger-locked, or on his right hip. Until today.
“Then how the fuck did it get there?” he asks, pointing to the space next to the sink.
“Watch your mouth,” she says.
He looks over at his four kids, who have all stopped eating to witness the show. He narrows in on Patrick. God love him, but he’s sixteen going on stupid. This would be just the kind of knucklehead move he would pull, even after all the lectures these kids have endured about the gun.
“So which one of you did this?”
They all stare and say nothing. The Charlestown code of silence, eh?
“Who picked up my gun and left it by the sink?” he demands, his voice booming. Silence will not be an option.
“Wasn’t me, Dad,” says Meghan.
“Me either,” says Katie.
“Not me,” says JJ.
“I didn’t do it,” says Patrick.
What every criminal he’s ever arrested says. Everyone’s a fuckin’ saint. They all look up at him, blinking and waiting. Patrick shoves a rubbery slice of bacon into his mouth and chews.
“Have some breakfast before you go, Joe,” says Rosie.
He’s too late to have breakfast. He’s too late because he’s been looking for his goddamn gun that someone took and then left on the kitchen counter. He’s late and feeling out of control, and he’s hot, too hot. The air in this cramped room is too soupy to breathe, and it feels as if the heat from the stove and six bodies and the weather is stoking something already threatening to boil over inside him.
He’s going to be late for roll call, and Sergeant Rick McDonough, five years younger than Joe, is going to have a word with him again or maybe even write him up. He can’t stomach the humiliating thought of it, and something inside him explodes.
He grabs the cast-iron skillet on the stove by the handle and sidearms it across the room. It smashes a sizable hole in the drywall not far from Katie’s head, then lands with a resounding BANG on the linoleum floor. Rusty brown bacon grease drips down the daisy-patterned wallpaper like blood oozing from a wound.
The kids are wide-eyed and silent. Rosie says nothing and doesn’t move. Joe storms out of the kitchen, down the narrow hallway, and steps into the bathroom. His heart is racing, and his head is hot, too hot. He splashes cold water over his hair and face and wipes himself dry with a hand towel.
He needs to leave now, right now, but something in his reflection snags him and won’t let go.
His eyes.
His pupils are dilated, black and wide with adrenaline, like shark eyes, but that’s not it. It’s the expression in his eyes that has him arrested. Wild, unfocused, full of rage. His mother.
It’s the same unbalanced gaze that used to terrify him as a young boy. He’s looking in the mirror, late for roll call, glued to the wretched eyes of his mother, who used to stare at him just like this when she could do nothing else but lie in her bed in the psych ward at the state hospital, mute, emaciated, and possessed, waiting to die.
The devil in his mother’s eyes, dead for twenty-five years, is now staring at him in the bathroom mirror.
CHAPTER 1
Damn woman is always moving his things. He can’t kick off his boots in the living room or set his sunglasses down on the coffee table without her relocating them to “where they belong.” Who made her God in this house? If he wants to leave a stinking pile of his own shit right in the middle of the kitchen table, then that’s where it should stay until he moves it.
Where the fuck is my gun?
“Rosie!” Joe hollers from the bedroom.
He looks at the time: 7:05 a.m. He’s going to be late for roll call if he doesn’t get the hell out of here pronto, but he can’t go anywhere without his gun.
Think. It’s so hard to think lately when he’s in a hurry. Plus it’s a thousand degrees hotter than hell in here. It’s been sweltering for June, in the high eighties all week, and barely cools down at night. Terrible sleeping weather. The air in the house is a thick swamp, today’s heat and humidity already elbowing in on what was trapped inside yesterday. The windows are open, but that doesn’t help a lick. His white Hanes T-shirt is sticking to his back beneath his vest, pissing him off. He just showered and could already use another.
Think. He took a shower and got dressed—pants, T-shirt, Kevlar vest, socks, boots, gun belt. Then he took his gun out of the safe, released the trigger lock, and then what? He looks down at his right hip. It’s not there. He can feel the missing weight of it without even looking. He’s got his magazine pouch, handcuffs, Mace, radio, and service baton, but no gun.
It’s not in the safe, not on his dresser, not in the top drawer of his dresser, not on the unmade bed. He looks over at Rosie’s bureau. Nothing but the Virgin Mary centered on an ivory doily. She sure ain’t going to help him.
St. Anthony, where the fuck is it?
He’s tired. He worked traffic detail last night over at the Garden. Friggin’ Justin Timberlake concert got out late. So he’s tired. So what? He’s been tired for years. He can’t imagine being so tired that he would be careless enough to misplace his loaded gun. A lot of guys with as many years on the force as Joe grow complacent about their service weapon, but he never has.
He stomps down the hall, passes the two other bedrooms, and pokes his head into their only bathroom. Nothing. He storms into the kitchen with his hands on his hips, the heel of his right hand searching for the top of his gun out of habit.
His four not-yet-showered, bed-headed, sleepy teenagers are up and seated around the tiny kitchen table for breakfast—plates of undercooked bacon, runny scrambled eggs, and burnt white toast. The usual. Joe scans the room and spots his gun, his loaded gun, on the mustard-yellow Formica counter next to the sink.
“Mornin’, Dad,” offers Katie, his youngest, smiling but shy about it, sensing that something is off.
He ignores Katie. He picks up his Glock, secures it in its holster, and then aims the crosshairs of his wrath at Rosie.
“Whaddaya doin’ with my gun there?”
“What are you talking about?” says Rosie, who is standing by the stove in a pink tank top and no bra, shorts, and bare feet.
“You’re always movin’ my shit around,” says Joe.
“I never touch your gun,” says Rosie, standing up to him.
Rosie is petite at five feet nothing and a hundred pounds soaking wet. Joe’s no giant either. He’s five feet nine with his patrol boots on, but everyone thinks of him as being taller than he is, probably because he’s barrel-chested and has muscular arms and a deep, husky voice. At thirty-six, he’s got a bit of a gut, but not bad for his age or considering how much of his life he spends sitting in a cruiser. He’s normally playful and easygoing, a pussycat really, but even when he’s smiling and there’s that twinkle in his blue eyes, everyone knows he’s old-school tough. No one messes with Joe. No one but Rosie.
She’s right. She never touches his gun. Even after all these years of his being on the force, she’s never grown comfortable with having a firearm in the house, even though it’s always in the safe or in his top dresser drawer, where it’s trigger-locked, or on his right hip. Until today.
“Then how the fuck did it get there?” he asks, pointing to the space next to the sink.
“Watch your mouth,” she says.
He looks over at his four kids, who have all stopped eating to witness the show. He narrows in on Patrick. God love him, but he’s sixteen going on stupid. This would be just the kind of knucklehead move he would pull, even after all the lectures these kids have endured about the gun.
“So which one of you did this?”
They all stare and say nothing. The Charlestown code of silence, eh?
“Who picked up my gun and left it by the sink?” he demands, his voice booming. Silence will not be an option.
“Wasn’t me, Dad,” says Meghan.
“Me either,” says Katie.
“Not me,” says JJ.
“I didn’t do it,” says Patrick.
What every criminal he’s ever arrested says. Everyone’s a fuckin’ saint. They all look up at him, blinking and waiting. Patrick shoves a rubbery slice of bacon into his mouth and chews.
“Have some breakfast before you go, Joe,” says Rosie.
He’s too late to have breakfast. He’s too late because he’s been looking for his goddamn gun that someone took and then left on the kitchen counter. He’s late and feeling out of control, and he’s hot, too hot. The air in this cramped room is too soupy to breathe, and it feels as if the heat from the stove and six bodies and the weather is stoking something already threatening to boil over inside him.
He’s going to be late for roll call, and Sergeant Rick McDonough, five years younger than Joe, is going to have a word with him again or maybe even write him up. He can’t stomach the humiliating thought of it, and something inside him explodes.
He grabs the cast-iron skillet on the stove by the handle and sidearms it across the room. It smashes a sizable hole in the drywall not far from Katie’s head, then lands with a resounding BANG on the linoleum floor. Rusty brown bacon grease drips down the daisy-patterned wallpaper like blood oozing from a wound.
The kids are wide-eyed and silent. Rosie says nothing and doesn’t move. Joe storms out of the kitchen, down the narrow hallway, and steps into the bathroom. His heart is racing, and his head is hot, too hot. He splashes cold water over his hair and face and wipes himself dry with a hand towel.
He needs to leave now, right now, but something in his reflection snags him and won’t let go.
His eyes.
His pupils are dilated, black and wide with adrenaline, like shark eyes, but that’s not it. It’s the expression in his eyes that has him arrested. Wild, unfocused, full of rage. His mother.
It’s the same unbalanced gaze that used to terrify him as a young boy. He’s looking in the mirror, late for roll call, glued to the wretched eyes of his mother, who used to stare at him just like this when she could do nothing else but lie in her bed in the psych ward at the state hospital, mute, emaciated, and possessed, waiting to die.
The devil in his mother’s eyes, dead for twenty-five years, is now staring at him in the bathroom mirror.
Reading Group Guide
This reading group guide for Inside the O’Briens includes an introduction, discussion questions, ideas for enhancing your book club, and a Q&A with author Lisa Genova. The suggested questions are intended to help your reading group find new and interesting angles and topics for your discussion. We hope that these ideas will enrich your conversation and increase your enjoyment of the book.
Introduction
As a police officer from an Irish Catholic neighborhood in Boston, Joe O’Brien has always prided himself on his self-control. And with four adult kids still living under his roof, he needs it. There’s JJ, the upstanding fireman hoping to start his own family; Patrick, the rowdy bartender; Meghan, the accomplished but uptight ballet dancer; and Katie, the restless yoga instructor just trying to get them all to take her seriously. Joe loves being their rock, but when he begins to experience bouts of disorganized thinking, temper outbursts, and strange, involuntary movements, his fiercely protective wife, Rosie, drags him to a neurologist. There, they are handed a diagnosis that will change their family forever: Huntington’s disease.
Each of the O’Brien children has a 50 percent chance of inheriting this lethal neurodegenerative disease. A simple blood test can reveal their genetic fate. As Katie observes the devastating symptoms in her once invincible father escalate, she struggles with the questions this test will impose on her future. She and her siblings must reach deep inside for the courage to reexamine their values and their dreams as they learn to lead lives defined by gratitude and love. With Inside the O’Briens, Lisa Genova has once again delivered a novel as powerful and unforgettable as the human truths at its core.
Topics and Questions for Discussion
1. In chapter 1, Joe mentions the “Charlestown code of silence.” Discuss how Boston acts as a kind of character in the novel. How does its unique culture seep into the O’Brien family relations and how they interact with their community? How is your community different?
2. In the beginning of the novel, Joe is horrified to recognize his mother, Ruth, in his reflection. Why do you think that is such a painful realization? How do his feelings about Ruth change? Discuss the complex ties we all have with our parents.
3. Joe is fiercely proud of his job as a police officer, but admits that he sometimes feels constrained by the uniform and the trappings that come with assuming that identity. How do you think that internal conflict ripples through his children and their professional choices? Who do you think is most like him? Who is most different?
4. Katie is compelled to leave, yet still feels tethered. Discuss the role that family and tradition play in the novel. When is tradition helpful, and when does it hold us back?
5. In the ways they can see, through external physical traits and personality, Katie and JJ come from their dad. Does this mean they also have his Huntington’s? Discuss the interplay of nature versus nurture in the narrative. How does each sibling define themselves in both relation and opposition to their family?
6. Even in their darkest moments, the O’Brien family finds reasons to be grateful. Name some of them. Do these reasons change over the course of the story? How? Do you specifically relate to any?
7. As a cop, it is essential that Joe make split-second decisions in high-stress environments. He takes pleasure in it. But later into his diagnosis, as his body goes to war with his mind, we see him starting to think in the long-term. Discuss the dichotomy of instinctual versus analytical thinking in the novel. When do they contradict each other? When do they complement each other?
8. Joe is a born storyteller but Rosie is “intensely private” about her family, especially when it comes to difficult topics. How do they compromise these two opposing impulses throughout the narrative?
9. Ultimately, Joe becomes an unreliable narrator. He can’t predict his moods or even his movements. How does he use the reflections of people and his surrounding environment to monitor himself? Who do you think he depends on most, and why?
10. Discuss what Catholicism means to the O’Brien family, specifically the theme of purgatory as it attends to the implications of the Huntington’s genetic test. Do you think religion informs their decision-making? How?
11. Joe is well versed in both the immediate and reverberating effects of trauma, having served in the aftermath of the Boston Marathon terrorist attack. He is aware that every day on the job might be his last. How is that specific dread different from the terrible anticipation of a Huntington’s diagnosis? How is it similar? Do you think Joe can still find honor in death from his disease? If so, how?
12. The O’Brien and extended Charlestown community is incredibly tight-knit. But when does that closeness cross the line into exclusivity? Discuss Katie’s relationship with Felix. Why do you think she hesitates to introduce him to her family? How does their reaction surprise her?
13. In chapter 31, Katie guides her dad through a yoga routine and tells him to “be the thermostat, not the temperature.” What do you think she means? And how does it influence Joe’s decision to change his mantra from “stay in the fight” to “stay in the pose”?
14. In the novel, we learn one HD symptom is “chorea”–jerky, involuntary movements–and is derived from the Greek word for dance. Discuss the role of movement throughout the story, in both its liberating and debilitating forms. Why do you think Meghan decides to leave the Boston Ballet to work with a more experimental dance company in London?
15. In chapter 34, Katie frets about the effect a HD diagnosis would have on Felix’s future. Discuss the feeling of accountability that often comes with living with a terminal illness. At what point do we all have to relinquish the illusion of having control over someone else’s life?
16. Discuss Joe’s realization that his mother, Ruth, communicated gratitude and love to her children when she was in end-stage HD. How does that trickle down through him and onto Katie? Do you think Katie moves to Portland? Would you?
Enhance Your Book Club
1. Katie lives by certain mantras, both her own and those given to her by her family. What are your personal sayings? Share them with one another and say what they mean to you. At your next meeting, you could write them down on a few note cards and participate in a mantra swap.
2. Raise awareness for Huntington’s disease by organizing a fund raiser to support research efforts. Lisa Genova has set up a donation site here: http://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=677
Or go to www.LisaGenova.com and visit the “Readers in Action: Huntington’s” section.
3. Explore the novel’s theme of movement by taking a yoga or dance class with your book group.
4. Sunday supper is a time-honored tradition in the O’Brien family. Discuss who would be around your ideal Sunday dinner table and how you show those people gratitude and love in your daily life.
A Conversation with Lisa Genova
In the book, you note that 90 percent of people at risk choose not to know. Why do you think that is?
I’m still surprised that this number is so skewed. The discovery of the genetic mutation for HD in 1993 made genetic screening possible, and so every generation within a HD family “at risk” is burdened with an incredibly complex question: Do you want to know if you carry the mutation? Many factors play into the decision not to know—denial, fear of depression and suicide, religion, lack of medical treatment, the impression that nothing can be done. Knowing all the people I now know who are at risk, I can appreciate this choice and realize nothing about this decision is black and white, right or wrong.
You have explored a number of neurodegenerative diseases in your previous novels. Why did you choose to focus on Huntington’s for this book?
My first year out of college I worked as a lab technician in a neurobiology lab at MGH East (in the Charlestown Navy Yard), researching drug addiction. I was twenty-two 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, having goose bumps on my arms, knowing I was witnessing a historic moment in all of science. Only one thing causes HD, and these scientists had just discovered it. Surely, there would be a cure for HD. It is now twenty-two 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.
Tell us about some of the key people who informed your research. What would you say was your most valuable resource?
I interviewed scientists, neurologists, and genetic counselors. I interviewed four police officers and came to know a Boston police officer extremely well. We were in touch almost every day for the year I was writing this book. I interviewed dancers from the Boston Ballet, Townies and Toonies, and yoga instructors. I came to know people affected by HD—people who are HD positive and asymptomatic; people who have early-stage, middle-stage, and end-stage HD, people who are HD negative; people who are at risk but don’t want to know their gene status; husbands and wives, siblings and children of people with HD.
The families living with HD were my most valuable resource. They are the real experts on this disease. In addition to teaching me about symptoms, genetic testing, and disease progression, they taught me about hope, resilience, courage, living in the moment, love, and gratitude, that there is more inside all of us than the DNA we inherit.
Katie is a yoga instructor and a big believer in inspirational quotes. How did your own yoga training inform her character? What did you learn?
I’ve been practicing yoga since 2001 and have been part of the beautiful Power Yoga of Cape Cod yoga community since it opened in 2009. I’d been hoping for a reason to take Jill Abraham’s teacher training, and Katie O’Brien gave me the perfect excuse! The 200-hour training deepened my connection to the spiritual aspects of yoga and meditation, and this was exactly what Katie needed to ultimately face living her life at risk.
There are eight limbs of yoga designed to bring harmony in mind, body, and spirit. The first limb of yoga, called yamas, are rules about our attitude toward others. The first of the yamas is ahimsa, which means compassion for all living things. I believe this is one of the purposes of my books, to create opportunities for readers to feel compassion for others, to see the ways in which we are all connected.
For me to authentically write about compassion for all and connection with everyone, I have to know, feel, and embody it. I don’t automatically have this at the start of every book. My grandmother had Alzheimer’s, and her dementia scared me. I became disconnected from her. My cousin’s son has autism. Many times I thought, How can she love him as much as she loves her daughter when he causes her so much pain, when he’s so hard to reach? With every story I write, I discover the compassion, the kindness, the connection, the love. I learn it, too. My capacity for loving people as they are, for seeing and connecting to the same whole spirit that is in all of us despite neurological disease or any outward difference, grows with each book I get to write. I learned so much through the yoga teacher training and Katie.
You are a celebrated author, but also a Harvard-educated neuroscientist. Do you approach creative writing and thinking differently than you do scientific thinking and analysis? How are the two mind-sets similar?
The research phase of writing a book feels analytical to me, much like scientific thinking—understanding all the information from the science to the medical to the lived experience, knowing what questions are relevant to ask and how the answers might fit together in a narrative. And I’ve often said that brain research was great training for the day-to-day life of a writer. You have to show up every day. You won’t know how it all turns out for about a year. You work alone with no feedback, with no one saying, “Great job today!”
But then the actual writing itself feels completely different from scientific thinking and brain research. Brain research involves following protocols, repeating procedures enough times to have sample sizes large enough for statistical analyses. I write without an outline. No protocols. I don’t refer to my notes or spend time Googling. I trust that I know what I’ve learned and let it go. I get present. I stay in the seat and allow what happens to happen, following the sensory moment-to-moment details. For me, writing feels more like yoga than science.
Joe’s mother, Ruth, also had HD but was treated very differently than he was. Why was this?
Many people diagnosed with HD today didn’t realize Huntington’s ran in their family. Their mother, uncle, and grandfather were never diagnosed. Due to shame and secrecy, a lack of public awareness about the disease, the puzzling constellation of physical, emotional, and cognitive symptoms, and a lack of proper diagnosis by physicians who weren’t then equipped to recognize the symptoms, many people with HD in previous generations were thought to be drunks, schizophrenic, crazy. The stigma attached to this person’s behavior and appearance along with the assumed causes led these people to be marginalized, outcast, often sent away to live in state hospitals.
Things are better today than they were for Ruth’s generation, but we still have a long way to go. Compassionate awareness is the key. I hope Inside the O’Briens plays a role in this.
Joe’s perspective is crucial to giving the reader insight into the real-time effects of HD. But why did you choose Katie over her other siblings as the alternate narrator?
Because of the genetic nature of this disease, it’s often called a “family disease.” All four O’Brien children have to wrestle with being 50 percent at risk and the decision of whether or not to do genetic screening. So, in the interest of accurately portraying life with Huntington’s, it was necessary to include this generation’s point of view. I chose Katie to represent the voice of her siblings’ generation because as a yoga teacher, I felt she was uniquely equipped with the spiritual wisdom to face this grim situation and to possibly give her father the tools he would need to find honor in living and dying with HD.
In chapter 10, Katie admits she is a big “someday talker.” Can you relate to this habit? What is still on your “someday” list?
I’m not like Katie in this respect at all. I’m not a procrastinator, and I’m increasingly fearless. I know I’m not guaranteed old age. If there’s something I want or need to do, I get to it.
Do you have a next book in mind? Can you tell us anything about it?
It will be about ALS.
Introduction
As a police officer from an Irish Catholic neighborhood in Boston, Joe O’Brien has always prided himself on his self-control. And with four adult kids still living under his roof, he needs it. There’s JJ, the upstanding fireman hoping to start his own family; Patrick, the rowdy bartender; Meghan, the accomplished but uptight ballet dancer; and Katie, the restless yoga instructor just trying to get them all to take her seriously. Joe loves being their rock, but when he begins to experience bouts of disorganized thinking, temper outbursts, and strange, involuntary movements, his fiercely protective wife, Rosie, drags him to a neurologist. There, they are handed a diagnosis that will change their family forever: Huntington’s disease.
Each of the O’Brien children has a 50 percent chance of inheriting this lethal neurodegenerative disease. A simple blood test can reveal their genetic fate. As Katie observes the devastating symptoms in her once invincible father escalate, she struggles with the questions this test will impose on her future. She and her siblings must reach deep inside for the courage to reexamine their values and their dreams as they learn to lead lives defined by gratitude and love. With Inside the O’Briens, Lisa Genova has once again delivered a novel as powerful and unforgettable as the human truths at its core.
Topics and Questions for Discussion
1. In chapter 1, Joe mentions the “Charlestown code of silence.” Discuss how Boston acts as a kind of character in the novel. How does its unique culture seep into the O’Brien family relations and how they interact with their community? How is your community different?
2. In the beginning of the novel, Joe is horrified to recognize his mother, Ruth, in his reflection. Why do you think that is such a painful realization? How do his feelings about Ruth change? Discuss the complex ties we all have with our parents.
3. Joe is fiercely proud of his job as a police officer, but admits that he sometimes feels constrained by the uniform and the trappings that come with assuming that identity. How do you think that internal conflict ripples through his children and their professional choices? Who do you think is most like him? Who is most different?
4. Katie is compelled to leave, yet still feels tethered. Discuss the role that family and tradition play in the novel. When is tradition helpful, and when does it hold us back?
5. In the ways they can see, through external physical traits and personality, Katie and JJ come from their dad. Does this mean they also have his Huntington’s? Discuss the interplay of nature versus nurture in the narrative. How does each sibling define themselves in both relation and opposition to their family?
6. Even in their darkest moments, the O’Brien family finds reasons to be grateful. Name some of them. Do these reasons change over the course of the story? How? Do you specifically relate to any?
7. As a cop, it is essential that Joe make split-second decisions in high-stress environments. He takes pleasure in it. But later into his diagnosis, as his body goes to war with his mind, we see him starting to think in the long-term. Discuss the dichotomy of instinctual versus analytical thinking in the novel. When do they contradict each other? When do they complement each other?
8. Joe is a born storyteller but Rosie is “intensely private” about her family, especially when it comes to difficult topics. How do they compromise these two opposing impulses throughout the narrative?
9. Ultimately, Joe becomes an unreliable narrator. He can’t predict his moods or even his movements. How does he use the reflections of people and his surrounding environment to monitor himself? Who do you think he depends on most, and why?
10. Discuss what Catholicism means to the O’Brien family, specifically the theme of purgatory as it attends to the implications of the Huntington’s genetic test. Do you think religion informs their decision-making? How?
11. Joe is well versed in both the immediate and reverberating effects of trauma, having served in the aftermath of the Boston Marathon terrorist attack. He is aware that every day on the job might be his last. How is that specific dread different from the terrible anticipation of a Huntington’s diagnosis? How is it similar? Do you think Joe can still find honor in death from his disease? If so, how?
12. The O’Brien and extended Charlestown community is incredibly tight-knit. But when does that closeness cross the line into exclusivity? Discuss Katie’s relationship with Felix. Why do you think she hesitates to introduce him to her family? How does their reaction surprise her?
13. In chapter 31, Katie guides her dad through a yoga routine and tells him to “be the thermostat, not the temperature.” What do you think she means? And how does it influence Joe’s decision to change his mantra from “stay in the fight” to “stay in the pose”?
14. In the novel, we learn one HD symptom is “chorea”–jerky, involuntary movements–and is derived from the Greek word for dance. Discuss the role of movement throughout the story, in both its liberating and debilitating forms. Why do you think Meghan decides to leave the Boston Ballet to work with a more experimental dance company in London?
15. In chapter 34, Katie frets about the effect a HD diagnosis would have on Felix’s future. Discuss the feeling of accountability that often comes with living with a terminal illness. At what point do we all have to relinquish the illusion of having control over someone else’s life?
16. Discuss Joe’s realization that his mother, Ruth, communicated gratitude and love to her children when she was in end-stage HD. How does that trickle down through him and onto Katie? Do you think Katie moves to Portland? Would you?
Enhance Your Book Club
1. Katie lives by certain mantras, both her own and those given to her by her family. What are your personal sayings? Share them with one another and say what they mean to you. At your next meeting, you could write them down on a few note cards and participate in a mantra swap.
2. Raise awareness for Huntington’s disease by organizing a fund raiser to support research efforts. Lisa Genova has set up a donation site here: http://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=677
Or go to www.LisaGenova.com and visit the “Readers in Action: Huntington’s” section.
3. Explore the novel’s theme of movement by taking a yoga or dance class with your book group.
4. Sunday supper is a time-honored tradition in the O’Brien family. Discuss who would be around your ideal Sunday dinner table and how you show those people gratitude and love in your daily life.
A Conversation with Lisa Genova
In the book, you note that 90 percent of people at risk choose not to know. Why do you think that is?
I’m still surprised that this number is so skewed. The discovery of the genetic mutation for HD in 1993 made genetic screening possible, and so every generation within a HD family “at risk” is burdened with an incredibly complex question: Do you want to know if you carry the mutation? Many factors play into the decision not to know—denial, fear of depression and suicide, religion, lack of medical treatment, the impression that nothing can be done. Knowing all the people I now know who are at risk, I can appreciate this choice and realize nothing about this decision is black and white, right or wrong.
You have explored a number of neurodegenerative diseases in your previous novels. Why did you choose to focus on Huntington’s for this book?
My first year out of college I worked as a lab technician in a neurobiology lab at MGH East (in the Charlestown Navy Yard), researching drug addiction. I was twenty-two 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, having goose bumps on my arms, knowing I was witnessing a historic moment in all of science. Only one thing causes HD, and these scientists had just discovered it. Surely, there would be a cure for HD. It is now twenty-two 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.
Tell us about some of the key people who informed your research. What would you say was your most valuable resource?
I interviewed scientists, neurologists, and genetic counselors. I interviewed four police officers and came to know a Boston police officer extremely well. We were in touch almost every day for the year I was writing this book. I interviewed dancers from the Boston Ballet, Townies and Toonies, and yoga instructors. I came to know people affected by HD—people who are HD positive and asymptomatic; people who have early-stage, middle-stage, and end-stage HD, people who are HD negative; people who are at risk but don’t want to know their gene status; husbands and wives, siblings and children of people with HD.
The families living with HD were my most valuable resource. They are the real experts on this disease. In addition to teaching me about symptoms, genetic testing, and disease progression, they taught me about hope, resilience, courage, living in the moment, love, and gratitude, that there is more inside all of us than the DNA we inherit.
Katie is a yoga instructor and a big believer in inspirational quotes. How did your own yoga training inform her character? What did you learn?
I’ve been practicing yoga since 2001 and have been part of the beautiful Power Yoga of Cape Cod yoga community since it opened in 2009. I’d been hoping for a reason to take Jill Abraham’s teacher training, and Katie O’Brien gave me the perfect excuse! The 200-hour training deepened my connection to the spiritual aspects of yoga and meditation, and this was exactly what Katie needed to ultimately face living her life at risk.
There are eight limbs of yoga designed to bring harmony in mind, body, and spirit. The first limb of yoga, called yamas, are rules about our attitude toward others. The first of the yamas is ahimsa, which means compassion for all living things. I believe this is one of the purposes of my books, to create opportunities for readers to feel compassion for others, to see the ways in which we are all connected.
For me to authentically write about compassion for all and connection with everyone, I have to know, feel, and embody it. I don’t automatically have this at the start of every book. My grandmother had Alzheimer’s, and her dementia scared me. I became disconnected from her. My cousin’s son has autism. Many times I thought, How can she love him as much as she loves her daughter when he causes her so much pain, when he’s so hard to reach? With every story I write, I discover the compassion, the kindness, the connection, the love. I learn it, too. My capacity for loving people as they are, for seeing and connecting to the same whole spirit that is in all of us despite neurological disease or any outward difference, grows with each book I get to write. I learned so much through the yoga teacher training and Katie.
You are a celebrated author, but also a Harvard-educated neuroscientist. Do you approach creative writing and thinking differently than you do scientific thinking and analysis? How are the two mind-sets similar?
The research phase of writing a book feels analytical to me, much like scientific thinking—understanding all the information from the science to the medical to the lived experience, knowing what questions are relevant to ask and how the answers might fit together in a narrative. And I’ve often said that brain research was great training for the day-to-day life of a writer. You have to show up every day. You won’t know how it all turns out for about a year. You work alone with no feedback, with no one saying, “Great job today!”
But then the actual writing itself feels completely different from scientific thinking and brain research. Brain research involves following protocols, repeating procedures enough times to have sample sizes large enough for statistical analyses. I write without an outline. No protocols. I don’t refer to my notes or spend time Googling. I trust that I know what I’ve learned and let it go. I get present. I stay in the seat and allow what happens to happen, following the sensory moment-to-moment details. For me, writing feels more like yoga than science.
Joe’s mother, Ruth, also had HD but was treated very differently than he was. Why was this?
Many people diagnosed with HD today didn’t realize Huntington’s ran in their family. Their mother, uncle, and grandfather were never diagnosed. Due to shame and secrecy, a lack of public awareness about the disease, the puzzling constellation of physical, emotional, and cognitive symptoms, and a lack of proper diagnosis by physicians who weren’t then equipped to recognize the symptoms, many people with HD in previous generations were thought to be drunks, schizophrenic, crazy. The stigma attached to this person’s behavior and appearance along with the assumed causes led these people to be marginalized, outcast, often sent away to live in state hospitals.
Things are better today than they were for Ruth’s generation, but we still have a long way to go. Compassionate awareness is the key. I hope Inside the O’Briens plays a role in this.
Joe’s perspective is crucial to giving the reader insight into the real-time effects of HD. But why did you choose Katie over her other siblings as the alternate narrator?
Because of the genetic nature of this disease, it’s often called a “family disease.” All four O’Brien children have to wrestle with being 50 percent at risk and the decision of whether or not to do genetic screening. So, in the interest of accurately portraying life with Huntington’s, it was necessary to include this generation’s point of view. I chose Katie to represent the voice of her siblings’ generation because as a yoga teacher, I felt she was uniquely equipped with the spiritual wisdom to face this grim situation and to possibly give her father the tools he would need to find honor in living and dying with HD.
In chapter 10, Katie admits she is a big “someday talker.” Can you relate to this habit? What is still on your “someday” list?
I’m not like Katie in this respect at all. I’m not a procrastinator, and I’m increasingly fearless. I know I’m not guaranteed old age. If there’s something I want or need to do, I get to it.
Do you have a next book in mind? Can you tell us anything about it?
It will be about ALS.
About The Author
credit to Greg Mentzer
Lisa Genova
Acclaimed as the Oliver Sacks of fiction and the Michael Crichton of brain science, Lisa Genova is the New York Times bestselling author of Still Alice, Left Neglected, Love Anthony, Inside the O’Briens, and Remember: The Science of Memory and the Art of Forgetting. Still Alice was adapted into an Oscar–winning film starring Julianne Moore, Alec Baldwin, and Kristen Stewart. Lisa graduated valedictorian from Bates College with a degree in biopsychology and holds a PhD in neuroscience from Harvard University. She is featured in the documentary films To Not Fade Away and Have You Heard About Greg. Her TED talks on Alzheimer’s disease and memory have been viewed over eleven million times.
Product Details
- Publisher: Gallery Books (January 5, 2016)
- Length: 368 pages
- ISBN13: 9781476717791
Raves and Reviews
"This heartbreaking book tells the whole story of how a major illness affects a family. Genova’s gift is to show that things do work out, in a sense. Her very human novel teaches us to keep living, to lean on each other and be there to be leaned on.”
– Matthew Thomas, New York Times bestselling author of WE ARE NOT OURSELVES
"This novel of siblings rocked by their father's Huntington's disease is a total tearjerker, but ultimately it's a tribute to family love."
– Glamour
"An intimate, heartbreaking look at life with Huntington's disease."
– Marie Claire
"Genova...compassionately details how an illness—this time Huntington's disease—can destroy not only the afflicted, but those who love them as well."
– People Magazine
“An unsparing, heart-piercing portrait…compelling.”
– The Washington Post
"A moving drama."
– US Weekly
"A gut-wrenching and memorable read."
– Library Journal, Starred Review
"Compelling and masterful."
– NYJOURNALOFBOOKS.com
"Inside the O'Briens is...about resilience and hope."
– Bookreporter.com
“Genova’s book will move readers as well as demystify a condition sometimes called ‘the cruelest disease known to man.’”
– Publishers Weekly
"Sympathetic, absorbing, multifaceted characters compel the reader's compassion. While Genova's background in neuroscience allows her to portray medical issues accurately, the heart of the O'Briens' story is human....Poignant and painful, warm and redemptive, Inside the O'Briens displays Genova's established strengths in bringing neuroscience to the lay reader, and portraying the power of love."
– Shelf Awareness
"A gut-wrenching and memorable read."
– Library Journal, Starred Review
"Compelling and masterful."
– NYJOURNALOFBOOKS.com
"Inside the O'Briens is...about resilience and hope."
– Bookreporter.com
“Genova’s book will move readers as well as demystify a condition sometimes called ‘the cruelest disease known to man.’”
– Publishers Weekly
"Sympathetic, absorbing, multifaceted characters compel the reader's compassion. While Genova's background in neuroscience allows her to portray medical issues accurately, the heart of the O'Briens' story is human....Poignant and painful, warm and redemptive, Inside the O'Briens displays Genova's established strengths in bringing neuroscience to the lay reader, and portraying the power of love."
– Shelf Awareness
"Inside the O'Briens . . . promises to do for Huntington's disease, what Still Alice did for Alzheimer's."
– Huffington Post
"Lisa Genova’s deep empathy for her characters shines through this poignant and uplifting story about family, grief and the resilience of the human spirit. Kudos to this amazing writer for showing us—once again—the transformative powers of even the most devastating events. Do not miss this fabulous novel."
– Barbara Shapiro, author of THE MURALIST and THE ART FORGER
"For the characters in a Lisa Genova novel, there is no way out, for genetic destiny has sealed their fate. And yet, for us as readers, there also is no way out, for we have no desire to look away. In his fear and courage, Joe O’Brien is an American hero. Huntington’s disease will claim his life, but not his capacity to love. This is Genova’s genius. A bold, skillful writer at the height of her narrative powers, she makes us long to hope for the hopeless and comfort the condemned. In their hard journeys, we find the small shining promise of every single ordinary day."
– Jacquelyn Mitchard, author THE DEEP END OF THE OCEAN and TWO IF BY SEA
"Lisa Genova’s subtle, finely tuned prose gains momentum until you don’t know whether to laugh, cry, or give thanks. Like all of her work, Inside the O’Briens is brimming with candor, pathos, and deeply human characters. I didn't want the book to end!"
– Vanessa Diffenbaugh, author of THE LANGUAGE OF FLOWERS and WE NEVER ASKED FOR WINGS
Awards and Honors
- Paradies Lagardere Fiction Airlines Pick
Resources and Downloads
High Resolution Images
- Book Cover Image (jpg): Inside the O'Briens Trade Paperback 9781476717791
- Author Photo (jpg): Lisa Genova credit to Greg Mentzer(0.1 MB)
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