Inside the O'Briens by
Lisa Genova
This book was incredible--very well-written, wonderful characterization, and informative, all at the same time.
I bawled until I nearly sobbed.
Huntington's disease, an inherited neurodegenerative disease, sounds absolutely horrid. Terrifying.
I really liked Still Alice by Lisa Genova, and Left Neglected was also quite good. But Inside the O'Briens was an out-of-the-ballpark home-run.
My poor husband reminded me more than once, as I presented my tear-stained cheeks to him when he interrupted my reading, that the O'Briens "aren't even real people", but Genova made Joe, Rosie, JJ, Meghan, Katie and Patrick real to me. Genova is a Harvard-educated neuroscientist, so I enjoy reading her very informative books, but I appreciate even more the way she paints the picture of who the people are behind the disease and the many ways it affects them and their families.
Inside the O'Briens shows us how a man receives the news that he will lose control of his body, experience uncontrollable movements of his body and face and extreme mood swings, progressively lose the ability to speak clearly, swallow, formulate words at all, or walk, all while retaining comprehension, memory, and awareness. He would be literally trapped inside his body, unable to provide for his wife, express his love, or even control himself from hurting those he loves. At the same time, she helps us experience the emotions of his loving wife as she comes to terms with her future of watching the deterioration of the man she loves. We see the various responses of the children first to the news of his disease, and then to the shock that they have a 50% chance of inheriting the same disease. Meanwhile, she paints the picture of a family with all the normal family dynamics--tensions between mother and daughter, or between sisters, or a wild-running sibling, or the developing relationships of young adults. And she does it all with beautifully phrased words, such as the following examples of her figurative language:
"The air in the house is a thick swamp, today's heat and humidity already elbowing in on what was trapped inside yesterday" (3).
"The wind feel like an angry woman who won't shut up--relentless, caustic, making an already uncomfortable situation kiss the feet of unbearable" (232).
She also slips astute observations throughout the book, my favorite of which is this rumination about the television:
"The room does feel strange, oppressive even, with the TV off. In fact, Katie can't remember ever being in this room without it on. It's as if they're missing their fifth sibling, the one who never shuts up and demands all the attention" (119).
I loved this reassurance from Katie's boyfriend. I love the way he acknowledges what she's experiencing and offers to hold her hand and go through it with her.
"I know what you're going through is terrifying and unfair and really hard. But you have to go through it. Right now, you're just standing still. You're sinking in it. Let me hold your hand and go through it with you" (255).
And these two quotes really stood out to me as I considered what it would be like to have Huntington's disease in the family.
"We don't know anyone else with HD. You're the only example we have. We're going to learn how to live and die with HD from you, Dad" (273).
"To the uneducated or unloving eye, Joe is horrifying, unacceptable, and then invisible" (212).
I didn't agree with every choice the characters made, of course, so I would recommend this book to a more mature reader. Some of the characters make immoral choices, although there is no explicit detail, and there is a lot of discussion of yoga and its worldview, as well as some serious discussion of suicide. But this is still a wonderfully-written book, very interesting and informative, and I must heartily recommend it.