Lisa Genova's new novel tackles Huntington's Disease (HD), a hereditary neurodegenerative disease that is 100% fatal. Physical symptoms usually begin in the mid-30s to mid-40s, but personality changes and cognitive problems occur before any of the physical signs are present. My first patient in my second year nursing clinicals was a woman in the end stages of Huntington's, and it is still one of the most harrowing experiences of my career.
The O'Briens are an Irish Catholic family living in Charlestown, Boston. Joe , Rose, and their four adult children live in the same house Joe grew up in. Joe's a Boston cop, proud of it and proud of his family. JJ is a fireman, and he and his wife Colleen are trying to get pregnant. Meghan is a ballerina, the pride of Charlestown. Katie teaches yoga, and dreams of having her own studio. Patrick is still finding his way, but they have faith. Rosie is Joe's heart, and she's every Irish Catholic mother I've ever known. Everyone still gets together for Sunday dinners, no exceptions.
When Joe's symptoms begin, he thinks he's aggravated an old knee injury or is overly tired. He has no reason to believe he has a fatal and progressive illness. His mother died young, but she had been institutionalized for years because of her drinking. Or so Joe was told.
Joe's diagnosis is devastating. It means he can't be cop, can't take care of Rosie like he had planned. Everything he is, all that defines him, is taken away by Huntington's. And the devastation continues as they realize that the children may have this gene and develop the disease.
The impact of the diagnosis on the family goes beyond dealing with Joe's progressing symptoms. Each child has to decide if they want to take genetic testing, which will tell them if they will eventually develop HD. I don't think anyone can know what they would do in that situation until they're in it. Is knowing worse than not knowing? Will the outcome change the immediate future, event though the disease is years away?
This was an emotional read, but it didn't have the impact for me that Still Alice did. Still Alice was a punch in the gut. I read it just a couple of years after losing my grandmother to Alzheimer's, and I couldn't read it straight through. It was too difficult. Inside the O'Briens is real, its portrayal of the disease is accurate, and it asks questions that we could all ask ourselves.This would be a great book club book.
Thank you to NetGalley and Gallery, Threshold, Pocket Books for a free copy of this book in exchange for an honest review.
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