In brief: The O’Briens are your normal, loving Boston family. Patrick is looking forward to retirement in ten years or so, but his dreams are cut short when he is diagnosed with Huntington’s disease. What does this mean for his wife and their four adult children?
The good: Emotive and powerful, this book is full of tears, laughter and the shock of a deadly disease.
The not-so-good: Some might say the ending, I say that it ended.
Why I chose it: Thanks to Simon & Schuster Australia for the ARC and the introduction to a new-to-me author.
Pages: 343 (ARC)
Publisher: Simon & Schuster
Setting: Boston, USA
My rating: 10 out of 10
I haven’t read (or seen) Still Alice, so I was completely in the dark when this ARC arrived from Simon & Schuster. Mentioning it to friends and family evoked a kind of reaction that I thought was generally reserved for One Direction/Backstreet Boys/Robbie Williams (depending on your generation), so I had an inkling that Inside the O’Briens
was going to be good. What I didn’t realise was how gripping this book was. It’s so real, it feels like the O’Briens have come to life and you’re in their living room watching their lives unfold in a way that none of them expected. Lisa Genova has done an incredible job bringing the human face of Huntington’s disease to the fore beyond the chorea and the psychiatric effects. I feel kind of ashamed now that when I’ve met people with this disease, I haven’t stopped to consider and appreciate that beyond the symptoms there’s a normal, loving human inside.
But let me get back to the story. The O’Briens are a normal Charlestown, Boston family. (They’re Townies, not Toonies – i.e. the originals before the neighbourhood became super cool). Joe and Rosie married young and had four children. Now JJ is married, Meghan is a ballet dancer, Katie teaches yoga and Patrick…well, nobody really knows what he does between bar work and fights. Joe is a police officer and is looking forward to retirement in about 10 years, hoping to enjoy life with the grandkids while he’s still young. But in his early 40s, Joe begins to change. There’s the weird, violent mood swings. He can’t sit still or stop twitching. He occasionally slurs his words. Rumours fly that he’s on drugs or an alcoholic. No way would Joe go there after his alcoholic mother died a horrible, lonely death in the state hospital. Reluctantly, he goes to the doctor and is later diagnosed with Huntington’s disease. Not only will the incurable disease kill him in about 10 years, but it’s genetic. Each of his children has a 50% chance of developing Huntington’s. They can find out with a blood test – but what will each of them do?
The O’Brien children find themselves in a quandary, particularly as they all have loves and careers that depend on their ability to move. Each respond in a different way to the decision to get tested or not, but the narrative focuses on Katie. She has a new lover. Is it fair to bring Felix into a life that could come crashing down? Is her dream of her own yoga studio doomed? Does she even want to know? Through each of the children, Genova explores the different reactions to finding out you might have a deadly disease. She also keeps the thinking reader on their toes – does Meghan’s wobble en pointe mean something? Does Patrick dropping a beer mean drugs or juvenile Huntington’s? Or is it all a tortuous coincidence? Genova also keeps things interesting for the scientist in me by describing symptoms, gene testing and results in an easy to understand fashion that is interesting. (Really, if she didn’t write such great novels she should write textbooks. There are not enough interesting neurology texts in this world). I didn’t know the limitations of the tests and the potential grey areas before reading Inside the O’Briens. As I love books that teach while they entertain, I’ve recommended this to some of my colleagues because this reminds us that under the disease is a person who deserves our respect.
The emotional pull of Inside the O’Briens is great, but it’s also balanced with warm and funny family moments. It brings the adult children back together as a unit as they decide what to do in regards to testing and the effects on their father. Joe’s pain at losing his job in a humiliating fashion is palpable and what makes it worse is the love he has for it. Watching this lively, devoted man lose the things he loves is like pulling a Band-Aid off slowly. It hurts, but you can’t stop doing it. The characters are what make this book such a gripping read – it’s a sad story, but one that offers hope amongst the questions.