“The message is that we are being stalked by a disease that steals our minds and instigates a monstrous Jekyll-and-Hyde transformation,” says Marlene Goldman, a literary theorist who is working to reframe the story of Alzheimer’s Disease. One way to do this, she says, is by “moving away from this genre of high Gothic, which pits non-diseased individuals, most often youth, against aged people who have succumbed to AD.”
Dr. Goldman is the principal investigator of the Jackman Humanities Institute Working Group on Aging, Old Age, Memory and Aesthetics, at the University of Toronto. She believes that we can start telling a different story about AD by understanding how disease concepts are created and change over time.
Even Alois Alzheimer didn’t believe he had discovered an isolated disease, distinguishable from normal aging, she recounts. In the book, Self, Senility, and Alzheimer’s Disease in Modern America: A History, the author Jesse Ballenger “explains that Alzheimer’s boss, Emile Kraepelin, created an entity he called AD to distinguish the rare cases in which dementia developed before the age of 65 (pre-senile dementia), even though pathological hallmarks, clinical symptoms and progression of both pre-senile and senile dementia were virtually identical.” She cites Ballenger’s theories as to why Kraeplin did this. One is that Kraeplin hoped to make this new entity a second mental disorder (after syphilis) with a clearly defined pathological substrate.
Dr. Goldman doesn’t minimize the real suffering associated with AD, but she believes that a literary analysis of it might help us to see vulnerability and dependency as part of life, not as things to make us cower in fear.
Stories like Mordecai Richler’s Barney’s Version and Alice Munro’s “The Bear Came over the Mountain” (made into the film “Away from Her”) highlight how memory loss affects everyone. In Munro’s story, Grant refuses to accept that his wife no longer remembers him and wonders whether Fiona is playing an elaborate trick on him. Is her transformation the result of her illness or a commentary on his past infidelities? This uncertainty forces him to view Fiona differently.
“As readers, we never feel as if the person afflicted with AD is utterly devoid of a sense of self.” This offers comfort, as does the way such stories question our obsession with cognitive abilities, as if they define our humanity. “We are all aging. I don’t like the idea that the story has to be solely one of decline,” says Dr. Goldman.