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The Boston Phoenix Memory Served

Charles Pierce's Alzheimer's saga.

By Julia Hanna

JULY 17, 2000: 

Hard To Forget: An Alzheimer's Story by Charles Pierce (Random House) 213 pages, $25.

It happened in 1985, Memorial Day weekend, the holiday for remembering. On Friday, John Pierce drove to the store to buy geraniums for the family graves. It was a tradition he and his son, Charles, had kept for nearly 16 years, but this year was different. Instead of returning from his errand, John turned up two days later in Montpelier, Vermont. When Charles and his wife, Margaret, arrived to take him home, he greeted them politely: "Nice to meet you." On the drive back to his home in Shrewsbury, John pointed to his son in the car ahead and told Margaret, "He's a great little fellow for helping us out." After this episode, Charles Pierce could no longer pretend that his father (who died in 1989) was merely forgetful.

In Hard To Forget: An Alzheimer's Story, Pierce etches with painful precision the effect of Alzheimer's disease on his family -- the fear, anger, guilt, and denial that does its own insidious damage as surely as any progressive disease. In addition to Pierce's father, three uncles and one aunt have been diagnosed with or show symptoms of Alzheimer's. Despite significant advances in research, the disease remains incurable. The recently completed map of the human genome will no doubt lead to an understanding of and a solution to Alzheimer's. Until then, Pierce lives with the knowledge that one day he, too, could lose his mind.

It's the least likely fate imaginable for a man so full of vim and vigor, both in person and on the page. When I meet Pierce at a coffee shop near his office in Watertown Square for an interview and comment on the disturbingly graphic metaphors that he uses to depict Alzheimer's throughout the book, he fires off a quick response. "It's a real and terrifying disease. In its own crazy way it's a very literary disease because it takes away the qualities that make you a good writer: memory, cognitive skills, and personality.

"There's a great Alzheimer's novel out there, but it's going to take a Joyce or a Pynchon to write it. It's not a Hemingway disease, it's not a simple, declarative-sentence disease by any stretch of the imagination. It's operatic, vast."

It seems difficult to imagine now, but 15 years ago many Americans hadn't heard of Alzheimer's disease. It was first diagnosed by German neuropathologist Alois Alzheimer, who in 1907 published a paper on the "plaques and tangles" found in a patient's brain tissue. When John Pierce disappeared and went off to Vermont, aluminum was thought to be one cause of the disease; hardening of the arteries and a mysterious virus had also been fingered as culprits, and "premature senility" was often leaned on as a stop-gap diagnosis. It was a condition fogged over with misunderstanding and shame, one all too easily ignored since patients can be adept at mimicking normal behavior.

"They're very good at constructing reality out of what's left," Pierce remarks. "That's one of the tragic things, because they can fool other people, too."

It doesn't help that those closest to the Alzheimer's patient often refuse to acknowledge that the person they once knew no longer exists. The biggest battle in Hard To Forget is not between John Pierce and the disease destroying his brain; it's between the loved ones he's left behind. Charles's mother, Patricia, denies reality to the point of neglecting her husband. Caught in the middle, Margaret exhausts herself trying to run two households at the same time. It isn't until Charles threatens his mother with a court fight that Patricia allows her husband to be placed in a nursing home, something she says they promised each other they would never allow.

Hard To Forget developed out of a 1995 article Pierce wrote for GQ. "The real fight was to keep it from becoming an exercise in catharsis. A lot of the work I did with my editor involved wrestling the material into shape, keeping the horror story of it without making the whole thing a primal scream." Pierce estimates he wrote through nine drafts of the material. "I guess you're your own best grist, but that's a lot of time trudging through your own guts."

In counterpoint to his family's story, Pierce chronicles the equally dramatic race among scientists (or "genome cowboys," as he calls them) to discover the cause of Alzheimer's. It's an engrossing story that covers ground from the Amazon rain forest to an Amish community in rural Indiana. The accompanying clash of egos and ethical standards is part Dynasty, part Nova. "I've spent a lot of time around athletes, who are very competitive people, but I had no idea what this was like," Pierce says of the rivalry among research factions.

Meanwhile, the caretakers and support groups carry on with getting everyone through another day. "So many of the people who deal with the disease do so because they've had some contact with it," Pierce comments. "Even after the person dies, they stay with it -- it just doesn't let you go. I think in my own way, that's what the book is for me."

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