'Still Alice' views tragedy of Alzheimer's Disease from the inside out

By Margie Reins Smith

Lisa Genova’s debut novel, “Still Alice,” is about a hot topic: Alzheimer’s Disease. Genova’s story, however, is different.

Remember the movies “The Notebook” and “Away from Her?” Both were views of an Alzheimer’s patient from the outside, in. “Still Alice” offers us a look at this heartbreaking disease from the patient’s point of view, from the inside out.

Information about Alzheimer’s Disease is all over bookstore shelves. You can find books on the biology of the disease and its possible causes. You’ll see books full of clinical studies, pharmacological information, tips for caregivers and family members. You can read up on early signs to watch for, patient case studies, and you’ll even find dozens of heartrending memoirs about Alzheimer’s patients, penned by their anguished loved ones.

Hardly any accounts are from the patient’s point of view.

Genova’s book is fiction, but it’s grounded in solid research. It offers a fresh look at Alzheimer’s as experienced by protagonist Alice Howland, a 50-year-old Harvard professor of psychology and an expert in linguistics. She’s smart, successful, happily married, the mother of three grown children, a grandmother-in-waiting. She runs. She travels. She lectures. She writes. She works.

She begins to note unusual lapses in her memory. She can’t find a word; she becomes disoriented in her own neighborhood; she repeats herself; she completely forgets to go on a business trip; she introduces herself to a colleague’s new wife a few minutes after they have already been introduced.

Alice chalks it up to menopause or lack of sleep or the ageing process. Then she thinks it might be a brain tumor. She worries. She makes an appointment with her primary care physician.

The diagnosis comes several months later, after dozens of tests and re-tests: early-onset Alzheimer’s Disease.

Apparently, the current conventional wisdom is wrong. We’ve all been reassured: If you think you have Alzheimer’s Disease, then for sure you don’t have it. Alice knows exactly what she has and exactly what is going to happen to her. The only variable is how long it will take. She’s terrified. She denies. Rages. Bargains. Copes.

The remainder of the novel tells the month by month progression of the disease for which there is no cure, the disease that inevitably leads to loss of memory, personality and identity. During these months, Alice breaks new ground by putting together a support group for patients in the early stages of Alzheimer’s Disease. Caregiver support groups, she discovers, are a dime a dozen. It’s the patients themselves who need groups.

The novel has some lapses. Some of the scenes are predictable and stilted. The dialogue is often stilted or unrealistic. But the reactions of Alice’s three children and husband ring true and her own thoughts and experiences are based on actual cases and offer the reader a new view – more personal and private – of the agonizing deterioration of an Alzheimer’s patient.
Just before she is diagnosed, Alice prepares to make a dessert which had become a Christmas Eve tradition for her family:

“Alice took out the ingredients for the white-chocolate bread pudding and placed them on the counter – vanilla extract, a pint of heavy cream, milk, sugar, white chocolate, a loaf of challah bread, and two half-dozen cartons of eggs. A dozen eggs? If the piece of notebook paper with her mother’s recipe on it still existed, Alice didn’t know where it was. She hadn’t needed to refer to it in years. It was a simple recipe . . . and she’d made it every Christmas Eve since she was a young girl. How many eggs? It had to be more than six, or she would’ve taken out only one carton. Was it seven, eight, nine?

“She tried skipping over the eggs for a moment, but the other ingredients looked just as foreign. Was she supposed to use all of the cream or measure out only some of it? How much sugar? Was she supposed to combine everything all at once or in a particular sequence? What pan did she use? At what temperature did she bake it and for how long? No possibility rang true. The information just wasn’t there.”

Alice reacts to her confusion with anger. She throws the eggs, one by one, in the sink, splattering the wall and the counter and the cabinets.

Months later, after she has deteriorated even more, her husband takes her to a hospital where her daughter has just given birth to twins, Alice’s first grandchildren.

Alice isn’t sure why her husband has brought her to the room and she doesn’t recognize the woman who is asleep in the bed. Then,

"A young man returned rolling a cart carrying two clear plastic, rectangular tubs. Each tub contained a tiny baby, their bodies entirely swaddled in white blankets and the tops of their heads covered in white hats so that only their faces showed.”

The young man asks Alice if she would like to hold one of the babies.

“Alice nodded.

“She held the tiny, sleeping baby, her head in the crook of her elbow, her bum in her hand, her body up against her chest, her ear against her heart. The tiny, sleeping baby breathed tiny, shallow breaths through tiny round nostrils. Alice instinctively kissed her blotchy pink pudgy cheek . . . Alice inhaled deeply, breathing in the scrumptious smell of her beautiful granddaughter, filling herself with a sense of relief and peace she hadn’t known in a long time.”

Genova holds a Ph.D. in neuroscience from Harvard. She spent months on research, reading up on the disease and the neuropsychological tests used to diagnose it. She interviewed physicians, caregivers, facilitators of support groups, Alzheimer’s research experts and dozens of people actually living with the disease.
Genova decided to write the novel in 2004. She quit her job and began the research, then did the actual writing at a local Starbucks while her 6-year-old was in school. She completed it in 2006, then did all the right things to dangle the manuscript in front of agents and publishers. Nobody bit.

She self-published the book in 2007.

Ten months later, she found an agent who immediately sold it to Pocket Books, a division of Simon and Schuster Inc., for slightly more than a half million dollars.

“Still Alice” was released the first week of January. It jumped onto the New York Times Bestseller List on Jan. 25 – in the No. 5 slot.

Genova is an online columnist for the National Alzheimer’s Association. “Still Alice has been reviewed – and generally praised – by Time Magazine, AARP, USA Today, the Boston Globe, The New York Times and more. She’s working on her second novel, “Left Neglected,” the story of a woman who recovers from a traffic accident with normal intelligence and memory, but who has lost the ability to process information coming from the left side of her body.“Still Alice” is reminiscent of Mark Haddon’s novel, “The Curious Incident of the Dog in the Night-Time,” which is narrated by an autistic teenager, 15-year-old Christopher.

“Still Alice” reminds readers that Alzheimers’ patients are still in there, still inside their bodies, living with their pock-marked, deteriorating brains. Alice is still Alice, even though she can’t remember her youngest daughter’s name (she refers to her as “the actress”) or her husband’s name (she calls him “the owner of the house”) or her connection to the newborn infant she cradles on her lap. Alice is foggy on the details, but she still has feelings and connections and pleasures and pain and love. “Still Alice” gives us a new way of looking at the tragedy of Alzheimer’s Disease.

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