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.
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?
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