Every once in a while I read something that makes me look at myself, my family and my patients differently because it demonstrates something critical about human nature, disease and/or diagnosis. Works by Oliver Sacks and Abraham Verghese, among others, have honored spots on my bookshelf because they do exactly this. I have recently added another valuable text, Still Alice, by Lisa Genova to that canon.
In the author's own words, from the readers guide at the end of the novel,
Still Alice is about a young woman's descent into dementia through early onset Alzheimer's disease. Alice is a fifty –year-old psychology professor at Harvard when she starts experiencing moments of forgetting and confusion. But, like most busy, professional people her age, she at first attributes these signs to normal aging, too much stress, not enough sleep, and so on. But as things get worse, as things do with this disease, she eventually sees a neurologist and learns she has early onset Alzheimer's.
As Alice loses her ability to rely on her own thoughts and memories, as she loses her cerebral life at Harvard, where she'd placed all her worth and identity, she is forced to search for answers to questions like, “Who am I now?” and “How do I matter?” As the disease worsens and continues to steal pieces of what she'd always thought of as her self, we see her discover that she is more than what she can remember.
Many of us know how challenging it can be to help a patient or loved one navigate the changing landscape of Alzheimer's. What is remarkable about this story is that it is told from the perspective of the person with Alzheimer's and not the caregiver. In this novel, Genova, a Harvard educated neuroscientist and columnist for the National Alzheimer's Association (www.alz.org), demonstrates how it feels to be on the other side of the stethoscope. With integrity and dignity she reveals the person cloaked inside this devastating diagnosis. The reader truly understands what it is like to run in Alice's shoes. For a clinician and a daughter, there is no better education.
Amy Klingler practices primary care at the Salmon River Clinic in Stanley, Idaho.