Inside the O’Briens by Lisa Genova (♦♦♦♦)
The O’Briens are an Irish Catholic family who live in Charleston, Massachussetts. Joe O’Brien, the patriarch, is a police officer with the Boston PD. Rosie, the matriarch, is a part-time worker. The O’Briens have four children between the ages of twenty-one and twenty-five.
At the age of forty-five, Joe O’Brien starts experiencing unexplained rage, jerky involuntary movements, loss of coordination and balance…After a genetic test, Joe is diagnosed with Huntington’s Disease. Life as the O’Briens knew it, is over because HD is a hereditary disease and every one of Joe’s kids has a fifty-fifty chance of being gene positive and start developing symptoms ten to twenty years into the future.
Two of the siblings are gene positive. Another one is ambivalent about wanting to find out her health status, and the remaining sibling doesn’t want to find out. As HD progresses on their father, the family must come to terms about how the next few years will be lived; whether they face life head on or they succumb to fear.
Inside the O’Briens is as much a medical tale with meticulous description of symptoms at various stages, as it is about the uncertainty the sufferers feel and how devastating the diagnosis of an incurable, fatal disease is for patients and their families.
I had to take breaks from reading every once in a while because the story is overwhelmingly heartbreaking and I became emotional several times while I read. Fortunately, Lisa Genova concludes her novel with a positive note. Some, even most of the O’Briens may die, but everyone dies eventually of something, so they decide to live their remaining years with optimism and hope that a cure may be found before they are due.
I didn’t know anything about Huntington’s Disease and that’s not a coincidence. Millions of people are affected in the U.S. by any form of cancer, or other terrible diseases. In contrast, the total sum of HD patients in the U.S. is 37,000 (Fenway Park filled at full capacity). Lisa Genova makes the point that for pharmaceutical companies is big business to focus their research effort on a disease like cancer due to the staggering number of sufferers than it is to focus on finding a cure for Huntington’s Disease, and that’s simply sad and repugnant.