I haven’t read any of Lisa Genova’s previous novels, but having seen (and sobbed over) the film adaptation of Still Alice, I knew that I was likely in for a heart-wrencher when I started Inside the O’Briens. I received a ARC copy from Netgalley (hooray!) and was excited to dive in. The first section is background on Huntington’s Disease (HD) which is well done especially for those who are not familiar with HD (it is a relatively rare disease, but the prognosis is awful – a breakdown of the nerve cells in the brain which leads to loss of functional abilities – and symptoms usually appear in a person’s 30s or 40s).
Even though I KNEW this was a book about HD and it is clear from the beginning that the patriarch of the O’Briens, Joe, will be diagnosed with the disease, I still hoped and was in denial, along with Joe himself, that it might not happen. But when he was finally diagnosed, the honesty and realistic responses Ms. Genova created were beautifully touching. Joe deals with the inevitable loss of his job as a Boston cop while reflecting on the death of his mother, who he had been told was an alcoholic, but in reality had HD. Joe’s wife of 25 years, Rosie is shaken to her core and loses her life long faith in Catholicism, at least for a moment. Each of Joe and Rosie’s four children struggle and make their own personal decisions about whether or not to get genetically tested (they each have a 50/50 chance of testing positive for the gene and if they are positive they are destined to get and likely die from HD). The questioning, the doubting, the watching for any peculiar behaviors is exhausting and you could feel the stress the O’Briens kids faced.
Genova explores the youngest O’Brien child’s response in the most detail. Katie is a yoga instructor with big dreams to move away from her childhood home in Charlestown, MA. She wants to live her own life surrounded by a diverse group of people, but her commitment to her family and fear over her HD status paralyzes her from making any choices. You get insight into her deliberation and her reliance on positive quotes include her mantra “You are either Now Here or Nowhere.” Genova also makes excellent use of the juxtaposition of the solace Katie finds in her yoga practice and what her mother finds from Catholicism.
While personalizing the disease through the story of the O’Briens, Genova also does an excellent job of educating the public about Huntington’s. In one chapter, Joe, his sons and buddies go to a Red Sox game and Genova excellently uses Fenway to put the impact of HD into perspective. “Fenway seats just over thirty-seven thousand, about the same number of people as have Huntington’s in the United States. Thirty-seven thousand. It’s a faceless number, and when it comes to diseases, it’s also a small one.” A few paragraphs later “And without a cure, everyone with HD will die. Joe pictures an empty, silent Fenway, the game still playing without any fans to witness it, and Joe’s heart breaks for every single seat here. The thought is overwhelming, haunting.” I was overwhelmed and haunted as well. Luckily, Genova also mixes in humor, making it possible to continue reading and staying within the O’Briens story.
Genova seemed to quickly resolve some issues that could have been bigger plot points, but that also felt realistic, as facing a terminal illness puts everything in perspective. In the end, you can have enough information to imagine the ultimate fate of Joe and some of his children but it ends without a definitive sense of how it all turns out. But I was left with a sense of hope despite the prognosis for HD and the O’Briens. Hope for a family, for lives lived with intention and purpose, but overall with love.