By James Kinsella
Angie Genova, who lived in Waltham, wasn't a complainer.
So when she began experiencing forgetfulness in her mid-80s, she didn't say much about it.
By the time she was diagnosed with Alzheimer's, the disease had significantly progressed.
"She just became a different person to be around," said her granddaughter, Lisa Genova, who was close to her grandmother.
Though Lisa was a trained neuroscientist, her expertise wasn't in Alzheimer's. She read what science she could find on the disease, as well as books on how a patient's family could help, which were written by clinicians and caregivers.
Nowhere did she find literature written from the point of view of someone who had the disease.
"That was the seed for [a] book," Genova said. "What does it feel like to have this?"
Ten years later, a multitude of readers have a good idea, having read Genova's first novel, Still Alice.
Originally self-published, and later picked up by Simon & Schuster, the book debuted at Number 5 on the New York Times best-seller list.
For Genova, 38, who lives in Chatham, the book's stunning success and her arrival as abest-selling author is the outcome of an improbable personal adventure.
"I wasn't even consciously dreaming of this until recently," she said Wednesday. "I was a good neuroscientist. I was a good strategy consultant."
But now, speaking of life as a novelist, she said: "I feel at home here."
Still Alice tells the story of Alice Howland, 50, a Harvard professor with a happy marriage, three grown children and a second home on the Cape.
Forgetfulness begins to creep into her life, followed by confusion and memory loss. Howland has begun a sudden descent into early Alzheimer's.
In Alice Howland, Genova has created a character who begins to experience the disease in the midst of a successful intellectual career, so as to show her fall into dementia "from this very lofty cerebral height."
Still Alice, Genova said, also is about what happens when you put all your identity into a job, and then find you can no longer perform that job.
Genova's neuroscience background, she said, "allowed me to ask the right questions when I was doing research."
One such question concerned the velocity of the disease. She discovered it was monthly, so that's how she structured the book.
Experiencing disease from Alice's point of view
In Genova's eye, the most powerful choice she made in the book was to tell the story through Alice's point of view.
While that structure leaves out the inner thoughts of Alice's colleagues, children and husband, Genova said, "We rarely get to sit in the seat of someone having Alzheimer's."
The depiction of reality gets less reliable as the book goes along, reflecting how the disease is taking away Alice's ability to be a reliable observer.
"But you're sitting right up against her Alzheimer's.... What we gain is so much more important, so much more compelling," she said.
Still Alice has connected with critics and readers. In a glowing March 2008 review in the Boston Globe, Beverly Beckham wrote, "After I read 'Still Alice' I wanted to stand up and tell a train full of strangers, 'You have to get this book.'"
If the publishing industry had its way, however, Still Alice still would be unpublished.
Even the decision by Genova, right, to begin writing the book involved a personal leap of faith.
When she first had the idea of writing a book from the point of view of someone experiencing Alzheimer's, she was working 60 hours a week as a strategy consultant. Novel writing wasn't much of an option.
In 2000, she quit her job to give birth to her daughter. When her then-marriage became troubled, she separated in 2003 and was divorced in 2004.
Along with the pain, Genova said, came a huge feeling of relief: "It was an opportunity to start anew, to live the life I wanted to rather than going along with my head down."
That summer, as Genova was contemplating going back to work part-time to accommodate her daughter's pre-school, a thought occurred to her: What if she embarked on her novel about Alzheimer's instead?
"I felt at the time it was a very bold move," she said, not to mention "crazy" and "irresponsible."
Over the next two years, she put the book together. Then she began sending query letters to literary agents allegedly willing to sign new clients.
Most never got back to her. Others sent her a standard rejection letter. Four agents turned her down by e-mail. Of those four, two said no thank you, a third said the novel was too much about Alzheimer's, and the fourth said it didn't work as a novel.
The decision to self-publish
Discouraged, she sent a message to one of the agents, saying she was thinking about self-publishing the book.
He immediately replied. Don't do it, he said. You'll kill your writing career before it starts.
But Genova said her new husband, Chris Seufert, "fearlessly" self-publishes.
If the book is good enough, he told her, it will get pushed through the appropriate channels.
Genova decided to go for it. She spent a few hundred dollars with iUniverse, a firm that produces books with a professional appearance, and that also will list a book with Internet booksellers.
Still Alice was published in July 2007. Genova sold copies out of the trunk of her car.
Word, however, began to spread in the Alzheimer's community about the novel. Independent Cape bookstores also began backing Still Alice, sponsoring signings and recommending the book by hand to customers.
Then came encouragement from previously self-published writers who had found publishing success, not to mention Beckham's key piece in the Globe.
At long last, Genova acquired an agent. Then, in the space of a day and half, the book drew three offers from publishers. She signed with Simon & Schuster.
Genova was traveling with her publicist on a Connecticut highway when she learned Still Alice had debuted at Number 5 on the Times best seller list.
"I screamed," she said. "We screamed and laughed."
The book's success also comes in the midst of a revolution, driven by technology and the Internet, that effectively is opening self-published to mass market success. A Jan. 21 piece in Time, "Books Gone Wild: The Digital Age Reshapes Literature," observes how William P. Young's The Shack, originally self-published, has had a long run on the Times best seller list, and how William Morris has given Brunonia Barry, author of the self-published novel The Lace Reader, a $2 million two-book deal.
At present, Genova is working on her next novel, "Left Neglected," the story of a woman whose car accident results in a brain injury that creates a known condition called "Left Side Neglect." In that condition, the brain doesn't see or process anything on a person's left side.
A treasured life in Chatham
Genova also treasures her life with her husband, 8-year-old daughter and 1-year-old son at their home in Chatham.
"I love it," she said of Chatham. "I'm so glad I moved here. I love the community. I love the pace."
Initially, she said, she wondered how she would deal with the quiet of the Cape's off-season. But she already looks forward to the last week of summer, when the bulk of the visitors leave, and "we have it all back again."
To Genova, Still Alice connects with readers in two basic ways.
One is the exploration of Alzheimer's.
"We all are aware of it, and yet most of us don't understand it," she said. For people who are reluctant to look directly at the disease in the people they know, the book is a direct and compassionate look at Alzheimer's.
The second concerns the broader questions about life that Alice's experience poses for anyone.
"We are more than we can remember, more than what we do for a living," Genova said.
"How do we connect with the people that we love with all that we have while we're here?"
(Lisa Genova with her 1-year-old son, Ethan.)
(The novel, originally rejected by the publishing world, that has reached the New York Times best seller list.)