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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.
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?
Lisa Genova is the New York Times bestselling author of Inside the O'Briens, Love Anthony, Left Neglected, and Still Alice. Her first novel, Still Alice, has been adapted into a 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 travels worldwide speaking about Alzheimer’s disease, traumatic brain injury, and autism. She has appeared on Dr. Oz, The Diane Rehm Show, CNN, Chronicle, Fox News, and Canada AM and is featured in the Emmy Award–winning documentary film To Not Fade Away. She lives with her family in Massachusetts.