Ten years ago Lisa Genova self-published her novel Still Alice, because as recently as 2007 no establishment publisher would touch a story about a woman with early-onset dementia. Then Still Alice became a best-seller and a popular film, and actress Julianne Moore won an Oscar for her empathic portrayal of Alice. The success of Still Alice opened the door for more stories of people dealing with dementia, scores of them. The author of one such memoir, Martha Stettinius, coined the term “dementia lit” to describe this growing body of work. Ten years ago, nobody would touch dementia narrative. Now, it has its own name as a literary genre.
This is good news. Stories and storytelling humanize us, creating virtuous cycles of empathy. When we find ourselves believing in story characters, we practice empathy, which we can then translate into empathy for real people. And the more of us who are willing to step into the shoes of others the better. When empathizing with persons with dementia, we can learn to put aside imagining them as shells or husks and instead see them more like geodes — opaque on the outside but radiant within.
Among the dementia narratives I’ve read, one stands out as especially radiant. The Long Hello: Memory, My Mother, and Me, by Canadian writer Cathie Borrie is not just a should-read memoir for those of us with a personal or professional interest in dementia. It’s a want-to-read work of art because reading this work is—can I even say this about a dementia book?—so damn pleasurable.
“What are the birds saying?”
“In a language?”
“In their language. In an upside-down language.”
The Long Hello consists of short dialogues like this one, which Borrie recorded and transcribed while caring for her mother, Jo, during the last years of her life with dementia. Borrie approaches these dialogues as collaborative poems. Embracing the rules of both improv theater and Dementia-Caregiving 101 (really, the same thing), Borrie does her best to enter Jo’s world, not only accepting her version of reality, but playfully—sometimes, impishly—embellishing it. It would be enough for the dutiful caregiver to smile and say, Yes, Mum, a bird. How nice. But for Borrie, real communication begins when they can build image and story together: “What are the birds saying?”
In the hands of a less insightful writer, the practice of sharing these conversations with the public could become a moral minefield. The author would be tempted either to treat the utterances of a demented person as oracular communiqués from the Great Beyond or, going to the other extreme, to put her mother’s words on display as accidental profundities, the way parents write posts on FaceBook of unintentionally clever things their children say. Borrie makes no attempt to right her mother’s “upside-down language,” like one rights a picture that’s come off its nail. Rather, Borrie chooses — and invites her reader — to turn oneself to see things from this new angle. The contortions the reader does to see the picture tone our muscles for feeling empathy.
Borrie has an ear always perked to hear the poetry in her mother’s expression. Earlier in life Jo was a musician, a wordsmith, and a lover of nature, especially the sea. Borrie is in love with the music of Jo’s thoughts:
“How was your day?”
“Today I was down at the horse barn. It came with lots of blessings.”
“Oh, my. I love listening to you talk.”
“You love what?”
“Listening to you talk.”
“Oh, I thought I heard you say, I love looking into your voice.”
“I love that, too.”
The poetry that mother and daughter create together becomes — or continues to be — their place to meet, the garden from which their relationship continues to flower. Borrie’s “improv” with Jo isn’t merely the former’s way of keeping the latter engaged and calm; it is a daughter’s way of continuing to respect, admire, and emulate her mother.
Most dementia lit narratives consist of moments of “Oh no!” and “Aha!” Their plots track a gradual reckoning with the awful truth—“Oh no! I have dementia!”—accompanied by cold-comfort consolations—“Aha! This is hard, but I can still find a way to live with it.” Borrie forgoes this pattern, choosing instead to explore life’s longer arc: the trauma of having to leave one father and adopt another, the death of a brother at thirteen and his imprint upon her life, the search for self meaning in work. If you’re looking for a memoir about life going well until dementia shatters everyone’s happiness, this is not it. Jo’s dementia is not a rupture from Borrie’s life; rather it is a draining and frustrating, but fruitful opportunity to take stock of life’s meaning.
You don’t need a special interest in autism to admire Faulkner’s The Sound and the Fury, whose narrator probably would fit that diagnosis. Nor do you have to have an interest in developmental psychology to appreciate The Catcher in the Rye’s Holden Caulfield. The same goes for Cathie Borrie’s The Long Hello. The diagnosis isn’t what makes the book; rather, it’s the voice. What makes The Long Hello a triumph is that it is not just “dementia lit.” It is “literature.”