“It’s an isolating subject,” Ann Hedreen said Saturday night, referring to Alzheimer’s disease, dementia, and other memory disorders. As organizer of a reading at Overflow Coffee Bar called “Brain Trust,” Hedreen brought together writers who have dealt with the isolation and sadness that comes from caring for someone suffering through such a disease. It was her hope that in doing so, they might make the private catharsis they had achieved through writing a shared experience.
“It’s a very scary disease,” says Hedreen, a writer, filmmaker, and first-time participant in the national conference of the Association of Writers and Writing Programs (AWP). “Brain Trust” was one of the many off-site events that was held during the conference last weekend. Hedreen found writers through the AWP off-site events page, and secured the venue through an old friend. Hedreen is particularly concerned about the fear and silence surrounding Alzheimer’s disease, which affects 5.1 million American families, and wanted to reach out to other writers who are addressing memory loss in their work.
The readers at “Brain Trust” came from around the country to attend the AWP conference. Drawn by Hedreen’s advertising on the AWP page, they decided to dedicate an hour to readings on the difficult topics of Alzheimer’s and dementia. The readers and the audience were excited to meet each other, heartened by the discovery of a community. And though the room buzzed with caffeine and conversation, the atmosphere was more subdued at “Brain Trust” than at the typical AWP reading. Not only were the readers generally a bit older–there were as many professors as MFA students–but the subject matter demanded serious treatment and had affected almost all of the writers’ lives. Sporting sweaters, nice scarves, and an air of solemnity, for the scheduled hour they read memoirs, poems, and novel excerpts. They all seemed to know the physical details of this terrible disease, which affect the brain’s ability to think, plan, and remember. They are also cognizant of what it feels like when a beloved relative’s memory has deteriorated so far they can no longer remember the names of those closest to them.
They are all part of a sort of tribe, one reader said, “a club they shouldn’t have to belong to.” Each of them had a family member affected by Alzheimer’s or dementia, and many served as caregivers. Their writing was informed by the experience: one poem expounded on the fast-slow pattern of memory loss shown in an Alzheimer’s patient, and an excerpt from a novel used clumps of text to reproduce what goes on in the mind of an Alzheimer’s patient.
The featured writer for the night was Alice LaPlante, who just finished her first novel, titled “Turn of Mind.” When her mother was diagnosed with Alzheimer’s, she tried to cope with the disease’s effects on her and her family by writing. “I couldn’t really get anywhere with my private writing until I started fictionalizing it,” she said. Her novel, a murder mystery told from the point of view of an Alzheimer’s patient who is the primary suspect in the case, attempts to “push the reader in the space” of an Alzheimer patient’s brain. While her book jacket describes the novel as “unputdownable,” LaPlante says that the plot is only incidental. LaPlante’s novel, instead, helped her to connect to the mind of her ailing mother, making bearable through fiction what was unbearable in reality.
The readers all discussed coping strategies, both pragmatic and spiritual. One reader suggested trying to fill in a patient’s memory working from the edges in, like a puzzle. Another reclaimed medical jargon by describing the plaque that forms around the neurons of a brain affected by Alzheimers as “twisted like morning glory vines.”
While the styles and formats of each of these works differed, the authors reached a kind of communion in words. These writers, together, translated a painful experience of loss into the world of literature. One poet described how, in her attempts to see a silver lining in caretaking, she imagined that her dad’s memories weren’t leaving him, but instead going to be kept somewhere else, on some hidden planet. Another, reflecting on the manner in which Alzheimer’s patients seem to be stuck repeating the same moments over and over, suggested that maybe they were just repeating it until they got it right.