The First Wave in a Long Goodbye
On Saturday, The New York Times unveiled a 20,000-word story — published in a separate section — that takes an unusual look at Alzheimer’s disease. Rather than focusing on the end stages of the illness, as many such narratives do, the story’s author, N.R. Kleinfeld, follows Geri Taylor, a woman who learned only a few years ago, when she was 69, of her diagnosis.
It is an expert piece of science journalism that goes well beyond memory lapses and explores the slow but relentless loss of the brain’s executive function. “Operating a car, finding the buttons, gets me mixed up,” Taylor is quoted as saying. “I can’t figure out how to turn on the air-conditioner. I’ll put my coffee down and go to the bathroom and come out and make coffee all over again. And then wonder, Where’s my mug?” And Taylor doesn’t just forget. She loses steps in everyday processes, putting on just part of her makeup, for example, but not all of it. “There is a sequence,” Kleinfeld writes. “She had problems with sequences.”
The New York Times went deep on the early days of an Alzheimer’s diagnosis. Visual by wildpixel/iStock.com
The piece, headlined “Fraying at the Edges,” joins a long tradition of chronicling a disease that millions of Americans have confronted, either in themselves or in a loved one. Among the predecessors to Kleinfeld’s effort is investigative reporter Greg O’Brien’s in-depth journey into his own gathering experience with the disease, documented in his 2014 book “On Pluto: Inside the Mind of Alzheimer’s” — a public odyssey he continues this month in video form at Nautilus magazine. Diana K. Sugg of the Baltimore Sun, won a Pulitzer Prize for beat reporting in 2003 for her coverage of scientists seeking to understand how certain proteins “gum up the brain mechanisms needed for memory.” And there was Michael Regnier’s eloquent piece in Mosaic two years ago, which looked at the history of Alzheimer’s diagnoses, and the ongoing hunt for clues into its origins.
But even set against these and other fine examples of journalism on a wrenching topic, the Times’ piece stands out. “I believe this is one of the most important articles ever written about persons living with Alzheimer’s,” said Bob DeMarco, who writes and maintains the web site Alzheimer’s Reading Room, in an email message. DeMarco cared for his own mother, who struggled with Alzheimer’s for more than eight years. “This article knocks home one of the most important lessons that caregivers and their families must come to learn,” he added. “Persons living with Alzheimer’s are capable of more than we can imagine.”
In a follow-up piece for The Times on how the story came about, Kleinfeld says that it was his editor, Michael Luo, who pushed the idea, and who suggested following someone newly diagnosed. “The disease crouches everywhere, but I didn’t have much interest in writing about it,” Kleinfeld wrote. “After all, Alzheimer’s was famous. Everyone knew its brute outlines, knew how drip by drip it transformed someone into someone else.”
Revealing that his mother, too, had struggled with Alzheimer’s prior to her death, Kleinfeld said that he came around to believing that there was still much journalism to be done. “The pace of the disease is unpredictable, but the first stage can last years,” he wrote. “I thought it would be illuminating to write a story that, in its entirety, examined the particularities of that introductory stretch, when you meet the disease, decide how to accept it and learn how to work with its evilness. Perhaps it would suggest a road map for others.”
Kleinfeld — a very capable writer — slips slightly when he tries just a bit too hard to be creative in his storytelling. He writes of a “sun-smacked day,” and “the early fumes of the disease,” for example, or of Taylor striving not to be “some spackled-over person,” and of her mind being a mess — “as if a windstorm had upended its contents.”
But better these attempts than relying on clichés — and they do little to detract from the formidable and moving journalism that Kleinfeld and his editors have undertaken on a complex and still mysterious disease. “Thank you for writing this story,” wrote one reader among a growing conference of people sharing their own experiences in comments attached to The Times piece. “It puts a human face on something that I carelessly think of as simply a terrible disease. Through the story, I can hear the human being who is suffering and what they are going through in their closed world.”