Reviewed by Nancy
4 out of 5 stars
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.
Alice Wexler’s brilliant scientific memoir, Mapping Fate, made me want to further explore the horror that is Huntington’s disease, so I decided to check out Lisa Genova’s fictional account of a Boston-area family who is affected.
Joe O’Brien, a Charlestown police officer, finally agrees to see a neurologist when his symptoms begin to affect his job performance. Not only does his diagnosis change his life, it also affects the lives of his wife, Rosie, and their four children, who have a 50% chance of inheriting this incurable and crippling disease.
While this story explores the disease and its devastating impact on Joe, it also, through the perspectives of his children, explores what it means to live a life at risk.
I loved getting to know the O’Brien’s, with all their quirks and flaws. I would have liked some deeper insight into the family’s relationships, particularly between the two sisters, Katie and Megan, and Joe’s relationship with his own sister, who moved across the country. I wanted to know more about what it was like for them growing up with a sick mother and not understanding what was wrong.
It must be difficult to watch a parent deteriorate from a disease knowing that there is a 50% chance a child may or may not get it. Though predictive testing is available for those at risk for Huntington’s, results from testing can have a major impact on every aspect of one’s life and the decision must be thought through carefully.
Lisa Genova does a wonderful job portraying the human, personal side of Huntington’s disease and the difficulties surrounding the decision to be tested. This is not the best fiction I’ve ever read. The prose, while not dazzling, is light, functional and accessible. I cared deeply about the O’Brien’s and appreciate the author’s efforts to raise awareness about this rare neurogenetic disorder while avoiding excessive sentimentality and melodrama.
I very much look forward to her other novels.