This summer my aunt sent me a copy of Lisa Genova’s Still Alice, a novel about a 50-year-old Harvard professor diagnosed with early onset Alzheimer’s. Scanning the back cover my eyes rested on the phrases “searing spotlight” and “dread disease,” tempting me to set the book on the bookshelf unread. My own dread disease of stage IV cancer already dominates much of the landscape in my life—why devote precious summer hours to another tale of grief? Breezy novels about beaches and sunsets seemed a more attractive option.
But the book was a gift, so I decided to give it a few pages. It didn’t take long to be drawn in to Genova’s chronicling of the cracks in Alice’s wonderful life. A thriving professional woman at the height of her career, Alice’s life was rich with things we in academia covet: smart students, speaking engagements in lovely locales, always-engaging campus environment. Amidst the loveliness of her life, the forgetting begins slowly, almost undetectably, building to a silent roar that only Alice can hear. She initially hides her diagnosis from everyone in her life, hoping that if she doesn’t say the words “early onset Alzheimer’s” out loud she can prevent the disease from taking control. But take control it does, and the rest of this first-person narrative walks the reader down the treacherous path that Alice must take as her life becomes increasingly dictated by the disease.
But even as we stand with Alice, time after time, at the edge of hopelessness, we catch glimpses of the grace suggested by the book’s title. Without a whiff of sentimentalism, Genova subtly, insistently nudges the reader toward the realization that even in the midst of catastrophic loss of self, Alice remains a self worthy of respect, love, and care. Even when she can only identify her daughters as “the two women in my kitchen” she still is capable at marveling at the beauty of her infant grandson. Even though by book’s end she barely resembles the witty, articulate psychologist we meet in the book’s first pages, Alice is nevertheless, at some deep level, still Alice.
How did I go from a resistant reader of this haunting story to seeing this book as a gift? First there were the resonances with my own story. As I’ve written in Hoping for More, before my cancer diagnosis, I had the “95 percent ideal life” as a professor teaching what I love; as a wife and mother of people I adore; as a forty one year old who ate right, exercised and slept eight hours a night. Similar to Alice, the cracks were not clearly visible at first—a quietly nagging backache, a broken vertebra deemed a fluke. Then, as with Alice, the diagnosis is spoken out loud and life is irrevocably changed. Grief takes over as life switches suddenly from wonderful to traumatic; and as the consequences of the diagnosis settle in, just like Alice, I have a gut-level conviction that I won’t be able to handle the irreversible dismantling of my life by the disease.
And yet this is where Still Alice offers readers in a gift: a reframing of life dominated by disease. For those of us with life-threatening diagnoses for which there is no cure, grace can come in new ways of thinking about how this story will end. I’m sure I’m not alone when I imagine the despair that’s waiting for me when the cancer in my body invades new places where it can no longer be contained. Alice imagined a similar future, and like many of us, assumed that she would not want to live such a compromised life. And while each of our journeys down this path toward sickness and death is distinct, the picture given us by Genova is that Alice’s life is still hers and—remarkably—still worth living, even when the loss is catastrophic.
Three years ago, it seemed I was dying. All signs pointed to the cancer’s invasion as too pervasive for any medication to contain it. And as awful as that time was, and as terrified as I am now of returning to that horrible place, I have to admit that there still were moments of grace, of beauty, of hope. Mostly they were fleeting. But they were still there. Still Alice reminds me of those moments. After finishing Genova’s exquisitely painful first novel, the terror of my possible future has not diminished, but the book has helped me to remember that when that time comes, I can hope for still more than simply a life dominated by disease.