Monster at the door cannot destroy Alice

The Boston Globe

Beverly Beckham

After I read "Still Alice" I wanted to stand up and tell a train full of strangers, "You have to get this book."

I'd taken it with me to New York along with the newest Stephen King, which I was smack in the middle of - a thriller, a potboiler, a "please, please, please don't talk to me now" book. And I was looking forward to three and a half hours of uninterrupted reading time.

I settled into my seat, but before diving back in to the King thriller, I picked up "Still Alice" - only to glance at it. It had arrived in the mail a week before; I'd promised to take a look and that's all I was doing - just looking.

But I couldn't put it down.

It is the antithesis of a King book, quiet and lean. And yet it's the same, too, because in the end, there's the monster breaking down the door and there's no place to run because there's no place to hide.

The monster in "Still Alice" isn't an invention. It's real. It's Alzheimer's disease and some 5 million people in the US are living with it, half a million younger than 65, just like Alice Howland, the fictional 50-year-old Harvard professor, whose world is all words and lectures and intellect. Alice lives with Alzheimer's and ignores it and battles with it and tries to tame it and outrun and outwit it.

And she does. For a while.

But the monster at the door does not go away.

When Lisa Genova, who has a PhD in neuroscience from Harvard University, went looking for an agent for "Still Alice" she was told that it would appeal only to people who had Alzheimer's or were involved with that community, that it would never be a bestseller, and that with her background, she should consider writing nonfiction instead.

But "Still Alice" was the book Genova had written, the book that her life had led her to write. She'd long been interested in how the brain works, and when she was at Harvard researching this, right down the hall were other scientists trying to break Alzheimer's genetic code. After she graduated, her 85-year-old grandmother was diagnosed with Alzheimer's disease. And later, when she was taking acting courses, the truths she learned in class were the impetus for the writing that led her to "Alice."

And so after being rejected by every agent she approached, Genova tried going directly to publishers. "But they wanted nothing to do with me, either."

What does an unpublished author with a rejected book do?

Many give up. Even Stephen King dumped his first book, "Carrie," in a kitchen wastebasket. It was his wife, Tabitha, who rescued it and told him it was good.

Genova knew her book was good. Every day for more than a year, she'd e-mailed back and forth with people who had early onset dementia. "They let me in and shared with me their most vulnerable selves." She'd shadowed neurologists from Massachusetts General Hospital and Brigham and Women's Hospital. "We role-played. I sat in on neuropsychological testing. I talked to social workers."

Plus she had lived with the disease. "My grandmother used to care for plastic baby dolls as if they were babies. She went to a bowling alley in the middle of the night. But she had the same sense of humor she always had. I felt I had the facts."

So she e-mailed the National Alzheimer's Association. "If you'd be interested in partnering ..." she wrote. "We don't partner," they wrote back.

But then a marketing rep who loved the book got in touch with her and wanted to distribute it.

But Genova didn't have a published book. "I thought then I could put the book on hold. Wait for a publisher. Wait a few years. Or I could put it out now, self-publish, and increase awareness."

She self-published. And with no regrets.

The main character is not old, like Genova's grandmother was, when she begins to forget things. Genova made her just 50 when the disease intrudes. There is no writing off her memory loss to what happens with old age. "When someone is young and forgetful, you notice," says Genova.

"Still Alice" is written not from the outside looking in, not from the point of view of a caretaker or a husband or a friend, but from the inside looking out. This is Alice Howland's story, for as long as she can tell it.

Every 72 seconds another American develops Alzheimer's disease. The literary agents who said Genova's book wouldn't sell are wrong. Because "Still Alice" isn't only about dementia. It's about Alice, a woman beloved by her family and respected by her colleagues, who in the end, is still Alice, not just her disease.