100 Books in a Year: Still Alice by Lisa Genova
My aunt, who passed away a few years ago from cancer, once looked at me during one of her chemo treatments and said, "Alzheimer's is the cruelest disease. There's no way to fight it." I was a little stunned that someone as sick as she was could be thinking of someone else, but that was just her. I should have paid attention at the time.
Alice Howland is a well-respected professor of psychology at Harvard University who begins to notice that she's forgetting things. She chalks this up to her busy schedule as a teacher and world-wide lecturer, the stress of her career and empty-nest syndrome, and what she assumes to be the approach of menopause -- she is 50, after all, and these things happen. Then one day, taking her daily run, she becomes lost a few blocks from home. She knows that the buildings are familiar and that she's supposed to know where she is, but her mind is blank. She is dazed and terrified, and when she comes back to herself a few minutes later, she tries to brush it off but can't.
After a visit to her primary and then another with a neurologist at Mass General, Alice is diagnosed with early-onset Alzheimer's. Genova, who has a Ph.D. in neuroscience from Harvard herself, does a masterful job of portraying the devastation, despair, and loss that Alice begins to experience from the moment of diagnosis. While focusing on Alice and charting her steady, heartbreaking decline month by month, Genova also explores how this changes the dynamics of every relationship in Alice's life -- with her husband John, a fellow professor; with her three grown children; with her colleagues; most importantly, with herself. Alice knows that there is going to come a time when everything that she has worked and fought toward is going to be washed away, like a sandcastle on a beach, and as a professor who wrote groundbreaking papers and conducted milestone research in the area of psychology and linguistics, the idea of losing the ability to communicate is shattering.
One of the best things about this book is that Genova chose to write it in the third person but it comes across as a first person voice. It's almost an eerie sense of Alice's story, told by Alice as an onlooker. The eloquence of the first half of the novel begins to fade into a more simplistic fashion as the disease marches on. One plot point that jabbed at my heart, again and again, was this: Alice, who has come to rely entirely on her BlackBerry for tying her to who she is, sets an alarm to ask her five questions every day. If the day should come when she cannot answer the questions, she instructs herself to go to her computer and open a certain file and follow the instructions. It just made my heart ache that she knew she was going to reach a certain point and wanted to leave an escape hatch. As the story progressed, and she could answer the questions with less and less certainty, I found myself crying. I tried to tell myself that it was only a story, but by the end I couldn't pretend anymore. It's not just a story. It's the story of every person with this horrible illness and no cure in sight. It's my grandmother's story.
My grandmother was diagnosed with Alzheimer's over 10 years ago. Since then, I watched her slip away, bit by bit, until she wasn't my Nanny anymore. Now she lives in a nursing home, and I never go to visit her. I'm a terrible person, and there's most likely a spot reserved for me in hell, but I just can't do it. My Nan was fierce; you didn't cross her and you didn't question her no-nonsense Pennsylvania German ways. She raised eight kids as a working mother, tag-teaming with my grandfather (he was on days while she did nights) and had the unwavering respect and love of her clan. She beat my ass on more than one occasion, and I deserved it. She helped my mother raise me and my sister when my father took off when we were babies, and when she and my grandfather moved to Idaho in the eighties for their health I missed them like crazy; I was thrilled when they moved back in 1996 and we didn't have to wait months between visits anymore. This is the woman who taught me how to scrub a floor on my hands and knees, make a bed (with hospital corners), and cook a roast. Her recipe for hobo bread is legendary. She used to pass steaming baked potatoes out with her bare hands and wash dishes in scalding water without gloves. She called me "Lady Jane" when I was in trouble, and "honey" when I wasn't. We spent a Christmas together in Aruba. She would tell me not to sit on her davenport in my dirty dungarees. She wore starched blouses and slacks in the winter, and pressed t-shirts and khaki shorts in the summer, with her hair always combed, lipstick fresh, and jewelry well-placed. She passed her middle name to me. She's been gone for a long, long time. In her place is a stranger who doesn't know me, or anyone for that matter. She can't speak. She wears a diaper. She's fed by an aide. The staff at the nursing home is wonderful, and they take extremely good care of her, but she's really just an elderly infant in a wheelchair, and I'm a useless excuse for a granddaughter. My Aunt Judy was right; it is the cruelest disease.
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