“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.
Excellent curtain raiser to the challenges of a terrorising disease that puts all family members in a constant state of dis-ease. I think Sharon Hunt captured the essence of Alzheimer’s — the sheer “unreality” of it where the loved one often demonstrates unbelievable behaviour. Many of us have great expectations from Prof Marlene Goldman’s group. Literature certainly is throwing light on a monsterous disease of our times and as more and more narratives come to light, we will hopefully begin to accept and perhaps even begin to understand it a little. My mother, 92, and a brilliant anaesthesiologist,was diagnosed with AD five years ago. Our “perfect” family was completely savaged since, and my father bore the brunt of her violent and unexpected behaviour for all these years from a med school sweetheart who was his partner and best friend or 63 years. I teach literature at U of Toronto, and I know and feel that a significant revelation through fiction is the next big a-ha moment that will help us to confront this terrible condition that is unalterable and indescribable. Many thanks, Sharon, for what I hope is a first of many unveilings.
Thanks Sharon.
What an interesting article. It’s good to see people approaching the disease differently and trying to humanize those with it. For although we have lost some of who they are, there’s still a person beneath the disease and that is who we should always be seeing.
Thank you Ryan and Julie for your lovely comments. This article was such a pleasure to research and to write. It’s wonderfully exciting to think that the conversation on Alzheimer’s can be reshaped into something much more positive for everyone. Best wishes.