Title: Inside the O'Briens
Author: Lisa Genova
Publisher: Gallery Books
Read: May 2015
From award-winning, New York Times bestselling author and neuroscientist Lisa Genova comes a powerful new novel that does for Huntington’s Disease what her debut Still Alice did for Alzheimer’s.
Joe O’Brien is a forty-four-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. Each of Joe’s four children has a 50 percent chance of inheriting their father’s disease, and a simple blood test can reveal their genetic fate. 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. Does she want to know? What if she’s gene positive? Can she live with the constant anxiety of not knowing?
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” (The San Francisco Chronicle), Lisa Genova has once again delivered a novel as powerful and unforgettable as the human insights at its core.
Wow – what an emotional rollercoaster ride!
The O’Briens are a happy and close-knit Irish-American family of six all living under one roof of an old triple-decker at the “Bottom of the Hill” in Charlestown. At 44, Joe O’Brien, patriarch and head of the family next to his devout Catholic wife Rosie, is enjoying the fruits of his labours after spending 25 years as a cop on the Boston Police Force and raising four healthy children into adulthood. He is thinking that after another ten years of working the job he loves he may be able to retire with a good pension and spend his autumn years watching his grandchildren grow up and having some quality time with his wife and family uninterrupted by the constant demands of his job. His plans are cruelly interrupted though when he starts developing some strange neurological symptoms – muscular twitches and temper outbursts he cannot control and can no longer ignore.
After Rosie forces him to seek medical help and have some tests done, the doctor delivers devastating news: Joe has Huntington’s Disease, an neurodegenerative disease passed down from his mother who died when Joe was only a child. There is no cure, only temporary control of symptoms, and sufferers face a cruel fate as they progressively lose all muscle coordination. Instead of retirement, Joe may be facing a cruel death in ten years’ time after having lost total control over all his bodily functions. But worst of all: there is a 50% chance for each of Joe’s children to have inherited the disease. A simple blood test is all that is required to show whether Katie, Meghan, Patrick or JJ also carry the gene mutation causing Huntington’s. But is it better to know and be prepared or live life in the moment not knowing what cruel fate awaits?
I have read all of Lisa Genova’s novels, but Inside the O’Briens was definitely the one that touched me most – once I started reading I couldn’t stop! Genova’s neuroscientist background is obvious from the in-depth knowledge of the disease and its effect not only on sufferers but also on their immediate family, friends and neighbours. The reader watches in horror as the tight-knit O’Brien family slowly implodes and everyone faces their worst demons – their own mortality and that of the people closest to them. As Joe struggles to come to term with his own mortality and guilt about potentially having passed on a cruel deadly illness to his children, his wife Rosie is struggling with her faith, which in the past has given her strength and hope. Each of their children also face a horrible choice – would they prefer to know their fate or live life not knowing? There is anger, guilt, fear and despair, and each member of the O’Brien family deals with it in a different way.
Inside the O’Briens is written from the perspectives of Joe and his 21-year old daughter Katie, which gave a wonderful insight into family dynamics whilst not overdoing the psychological aspect of the story (as may have happened had Genova given each family member a voice). I really felt for Katie as she is struggling to make decisions regarding her future. How will not knowing if she is a carrier affect her? Will she be paranoid that each trip, each stumble or slip is a sign of Huntington’s? But would going through genetic testing be any better? Would knowing she had the disease stop her from having a relationship, planning a family, embarking on a career? As a yoga teacher Katie tries very hard to live in the moment and look after her health. But she knows that if she is gene-positive for Huntington’s, there is nothing she can do to make any difference – her fate is in her genes, it would just be a matter of time for the symptoms to manifest themselves.
There are so many impossible and heart-breaking choices in this book that it was difficult to fully comprehend the depths of despair a sufferer must face. And yet Genova manages to explore the topic with the family’s sense of hope, humour and love and support for each other. All the characters feel real and genuine, and it is impossible not to feel for them. Genova offers explanations of different aspects of the disease, reflecting the way in which Joe and his family find out the details themselves – the preview copy contained some textbook-type explanations (which may or may not be in the final edition of the book) which provided some background information on this cruel disease. Despite the serious topic, the overall feeling after reading it was positive, engendering a deep and instant gratitude for the health we take for granted. As a mother, I did not even want to imagine some of the horrible choices and devastating emotions experienced by the parents and would-be parents in this novel.
Inside the O’Briens is a complex and layered story of the emotional effects of a cruel genetic disease on a family, which cannot be done justice in a review, so I will leave it at that. I think that Genova has done an outstanding job exploring this topic. Very highly recommended. Definitely a novel to go on my favourites list and one whose ethical dilemmas will stay on my mind for some time to come.
Thank you to Netgalley and the publisher for providing me with a free electronic copy of this novel in exchange for an honest review.