The Story of Still Alice

January 27, 2013

Lisa Genova, neuroscientist and bestselling author of Still Alice (2008), Left Neglected (2011), and Love Anthony (2012), presented the Arthur Curley Memorial Lecture on Saturday morning, January 27. Although her more recent novels focused on autism and hemispatial neglect, Genova chose to talk about her first book, which revolved around a 50-year-old woman, Alice Howland, who develops early-onset Alzheimer’s.

After getting her PhD in neuroscience from Harvard University, Genova decided to find out as much as she could about Alzheimer’s when her grandmother was diagnosed with the disease. She knew about the sticky proteins that prevent neurotransmission from brain cell to brain cell and lead to dementia, but this only helped “the scientist in me, not the granddaughter in me.”

Genova said she decided to write a story about Alzheimer’s when she realized that most self-help books were written “from the outside looking in.” Perhaps a novel could help others understand “what it really feels like from the standpoint of the patient.”

Only in 2003, when she was taking time off to raise her child and going through a divorce did she decide to sit down and write the book. “Scientists don’t write novels,” she worried. “I felt completely crazy not doing research.” However, her Harvard experience opened doors for her that usually remain closed for other writers. Genova was able to talk to leading neurologists about their experiences, and she was invited to join an online group of early-onset Alzheimer’s patients who called themselves PWD (“People With Dementia”). The group nicknamed her TAB (“Temporarily All-Brained”). “I resolved to learn as much as I could about the truth about living with Alzheimer’s, then launch into fiction,” she said.

It took one-and-a-half years to write the book, and “then came the literary agents,” Genova remembered. “I had to self-publish it because all the agents thought a book about Alzheimer’s was too sad, depressing, and scary. But in 2008 it was picked up by Simon & Schuster and it spent 41 weeks on the bestseller list.” And now a movie based on Still Alice will be filmed in the fall of 2013, starring major Hollywood actors (though she could not give any names).

“5.4 million Americans have Alzheimer’s,” Genova said. “We can learn about the science and the statistics, but with a story we can see how we are all similar and gain compassion and empathy for what a character is going through.” She added that library book events are her favorite, because they are “packed” with interested readers.

She is now working on a novel about Huntington’s disease, a genetic disorder that affects muscular coordination and cognitive abilities.


2013 ALA Midwinter Meeting – Highlights So Far

A video compilation of the events of Midwinter so far, including Steven Johnson, Maureen Sullivan, Rich Harwood, Lisa Genova, Gregg Olsen, Terry Brooks, Ruth Ozeki, and ALA Presidential Candidates Courtney Young and Barbara Immroth.