A few pages from the end of Still Alice, the main character, a 50-year-old Harvard professor struggling to retain as much of her life as possible in the face of Alzheimer's disease, sits with the man she can't recognize as her husband and reads a book that she declares after a few minutes to be familiar. He tells her that's because she had written the book with him.
After a few moments of consideration, the confused muddle of neurons in her brain allows her to remember him, the book and herself.
"I miss myself," she then says.
"I miss you too," is his response.
It's an extremely real scene from Lisa Genova's first novel, full of heartbreaking believability and told, unusually, from inside the mind and heart of a person with the disease.
Genova got it right because she's a neuroscience PhD, and because she watched her grandmother's life diminish through Alzheimer's. The combination of her knowledge of brain function and curiosity about what this progressive disease actually feels like while it's happening is the seed of this book, and also the reason it's so powerfully resonant.
The story opens with Alice Howland helping her forgetful husband, John, find his reading glasses. They are a high-functioning, busy professional couple with three adult children: one a lawyer, one a medical student and another an aspiring actor.
Both Alice and John put their intermittent brain freezes down to too much multitasking. Who wouldn't? When Alice, a renowned international lecturer, forgets words during a speech she has successfully delivered plenty of times before, and then gets utterly lost a few blocks from home during her daily run, she begins to worry, tries to put it down to approaching menopause and then finally relents and sees a specialist. The frightening and unbelievable diagnosis of early-onset Alzheimer's is something she keeps to herself for as long as she can.
When she finally does tell her family, they are predictably devastated, for Alice and for themselves. But no matter how much support they give, she is overwhelmed by the knowledge that as their career-striving, family-building lives move forward, hers is gradually disappearing. She can't bear to think that she will one day be a shell of her former intellectual, successful, thriving self. She makes a pact with herself to end her life should it get too difficult. In order to remember her promise, she writes a note with instructions about where to find the pills she will use and how to use them, and places it in a computer file called Butterfly.
She then decides that while she's still cognitively able, she will share her experience with other early-onset Alzheimer's sufferers, but has difficulty finding support groups for this disease cohort. So she begins her own, and also delivers a keynote speech at an Alzheimer's conference, where she appeals for more early-onset diagnoses and asks families, caregivers and professionals to remember to "look us in the eye, talk to us directly," and to not take it personally when they forget who their loved ones are.
"My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I'll forget that I stood before you and gave this speech. But just because I'll forget it some tomorrow doesn't mean that I didn't live every second of it today. I will forget today, but that doesn't mean that today didn't matter."
When looking for a publisher for this story, Genova was often told that it would only appeal to the Alzheimer's community. So, she self-published and self-marketed. Word of mouth spread about the universal appeal of Still Alice, and she gained an agent, a publisher, a top-10 spot on The New York Times and Globe and Mail bestseller lists, and some high praise for her compassionate page-turner. It's well deserved.
Through her depiction of real-life situations and their impact on a close-knit family coping with this tragic disease, Genova shows us that when you lose your mind, you still have your heart, your default emotional responses and your essential self. Something for all of us to remember.
Carla Lucchetta is a Toronto-based writer and television producer.