Saturday, December 4, 2010

How to Write Alzheimer's, Part The Umpteenth (with a coda)

I'm thinking of Elizabeth Bishop's lines in "One Art":

the art of losing's not too hard to master
though it may look like (Write it!) like disaster.

The imperative to write, so obviously an imperative to make right, says a lot about how we write when we write about disasters. There is an impulse to fiddle, to fix, to make the villanelle work because the keys are lost, the cities are lost, the loved one is gone.

I write Alzheimer's, though I cannot make it right. So how can we who write about Alzheimer's represent it so that others who know (or will know) it have access not just to its ravages, but also to their forms? What is the form a disease takes in literature? This is what I asked myself as I wrote a proposal for a conference on Women and Aging in fiction. At the risk of losing a reader not charmed by the abstraction of abstracts, here goes:

An Ongoing Whose Plot Cannot Find the Door”: Narrative Strategies in Alzheimer's Literature

In The Forgetting: Alzheimer's: Portrait of an Epidemic (NY: Anchor Books, 2001) David Shenk writes: “For better or worse, the strange notion of reverse childhood turns out to be the best map we have to understand the terrain of Alzheimer's” (125). Shenk is hardly the first to think of old age as a “second childhood,” or to note that “Alzheimer's patients in the middle and later stages find a tremendous comfort in children's books and music” (130). In my recent e-book, Old Women Look Like This, I tested this idea by placing Alzheimer's sufferers inside the plots (and language) of well-known children's books, including Anne of Green Gables, Are You My Mother?, and Pippi Longstocking. When the translation is made, the comic hero of the children's book becomes a tragic one. What is a forward-looking genre—the child looks forward to having more power than she does now—cannot sustain the narrative of a backward-looking disease. In my earlier book, Dementia Blog, I preserved the backwards order of the blog (where one reads from present back into the past) in order to evoke the confusions of Alzheimer's for the sufferer and her family members. Hence, effects precede causes; what one sees today seeming to influence what one sees tomorrow. The question I would like to pose in my talk is this: what narrative strategies best convey structures of perception in Alzheimer's, for patients, their relatives and caretakers? I will argue that linear, diachronic narrative strategies assume a logic that the disease has already destroyed, and that we need to use other forms to get at the illness's chaotic thinking.

That last sentence, as one reader informed me, is polemical--there's "need" in my argument, as well as description. That's the writer in me, trying to justify my means, if not my ends (or end). Joe Harrington has blogged a couple of times on What Old Women Look Like; what has struck him as most powerful about the e-book is something that bothers me about it. He calls it tragedy. He writes: "While it would be an overstatement to say that Old Women Look Like This makes me want to slit my wrists to avoid growing old, let me put it this way: if I were the sort of person who liked to get drunk and drive real, real fast, this book would not be an argument for changing ways." I wrote him to say that was not what I had intended! In thinking through his response, he writes later: "But I still think that the power of Old Women comes from its unwillingness to try to give a happy ending to a process that resists it - a rare resistance to the forced optimism of American culture."

So the pieces, based as they are on children's books into which I poured Alzheimer's patients (my mother Martha becomes the little bird of Are You My Mother?, Juanita Goggins becomes Pippi Longstocking, Anne of Green Gables resides in Manor Care Gables) undo the children's narratives of power, independence, heroism. Where Pippi lives alone happily, Juanita Goggins dies of hypothermia. Where the little bird finds his mother, my mother looks but cannot find hers. The method do the tragedy in different voices, a lot of them.

But I pull up short. I do not want them to do that. Is it my own surrender to "the forced optimism of American culture"? Do I want an Hollywood ending, in which there's a cure and my mother and her fellow residents walk off into the sunset on their own two feet, singing the multiplication tables? Or is there something else at stake? I think there is, which is why these pieces are only partial portraits of the Alzheimer's epidemic.

Alzheimer's endings are often not happy or sad, but mixed--mixed up. An ending is not a crash, though it may seem to be, if your relative has Alzheimer's, especially in the later stages. An ending, which is literary, can also point to a spiritual sense of opening. There is more to the Alzheimer's home than tragedy. Even if "reverse childhood" doesn't return us to the joys of childhood, but only its incapacities, it can return us to notions of community, care, fellow feeling. Am I romanticizing? I hope not, because the kind of care I'm talking about is often banal. It amounts to helping someone who can't wield a fork to eat. It amounts to teasing someone who doesn't understand the joke. But it reflects back on those who can.

This is the subject for another post, I'm sure, but in my work on master's and doctoral dissertations in fiction (short story, flash fiction, novels), I've noticed over the past few years that when the writer addresses spiritual matters, he or she does so as a joke. We have the yoga enthusiast who is type A; we have the seeker who goes shopping; we have a repeated series of failures to connect to anything greater than ourselves, because we are hypocrites and so easily mocked. (Let me add that these theses and dissertations were damn good.) But we do not have the difficult work of finding that "ordinary affect" that is more than ordinary, is luminous.

I have only started to read a new novel by one of our doctoral students, Joseph Cardinale, The Size of the Universe, but I find it a brave venture into the world where something is possible beyond the one so many of these narratives seem to demand (or to fall into). Cardinale also tells a kind of children's tale, or fable. His subjects are over-determined in ways that could be dangerous for a young writer. "The Great Disappointment" begins this way: "After the flood began I was alone with Mother in the house from before. Neither of us knew what to do" (15). Uh oh, one mutters. We've got both Mother and a flood. It's the full Freudian: mother and monotheism all in one sentence. Then we get fish and Christ. Not just Freud, but also Faulkner stalks this story. (And you thought it was hard to write about love!) And then the Savior comes, caught on a fish hook, and he is an orangutan. It's a long story, but in it the speaker comes to free his Savior, rather than the other way around. The end of the world, where we are situated, requires stillness, rather than a forward narrative.

He [William Miller] had discovered a new strategy for searching for Christ. His strategy was to stop searching, to remain where he was in the forest and wait for God to find him. His mistake, he decided, was to believe that he had to hunt for the Savior, when in fact the Savior was hunting for him and would only appear in the moment his mind grew still and silent as the stars . . . . Let us then go backward, he wrote on the final page of his journal. It is death to go forward; to go backward can be no more. (40)

The story ends with the savior searching, the narrator knowing that "I was all around him all the time" (51). This blog post is leading me to an ending, an ending that I'm coming to believe is about form (the fable, the children's story), about searching (for the Savior, for meaning), and about ending (not happy or sad, but something more mixed up). It's an ending where the searched for becomes the seeker, where the Alzheimer's patient becomes the heroine of a children's book, where American culture is at least tinged with another--more ambiguous--sense of an ending. It's a heroism of the bedpan, or the blown nose. Our savior may be an "ape," but he has at least found us.


[A bit later] Blogging an essay is as much a temporal as a logical form, moving as it does by accretion more than rhetorical superstructure. The narrator of Joseph Cardinale's chapter, "Proportions for the Human Figure," which concludes The Size of the Universe, has a fascination with astronomy. He watches TV shows about the stars. "The astronomer drew a circle on the blackboard. Inside the circle he wrote Black Hole. The border of the black hole was called the accretion disk" (110-111). Some particles stay inside the disk, while others are thrown out of it.

This narrator is also fascinated by his wife's decline--her de-creation--into Alzheimer's. Joseph Cardinale wrote to alert me that the book I had not finished, but had already blogged on, fit more neatly into my ideas about it than I yet knew. He noted: "In certain ways the entire book is about memory and identity, stillness and movement, particularly the final three stories, and in all of them, too, I was aiming for just the the kind of mixed-up endings you discussed in your post (particularly in final sentences). In the last story, though, the narrator's wife is literally suffering from Alzheimer's. Most of this story was based on the relationship between my grandparents -- my grandmother died after a long period of dementia a few years ago. And some of the dialogues and details in the story are drawn directly from the journals my grandfather kept during that period, which I wove together with a lot of other themes and texts." Historical and fictional time thus are braided in ways that family members of Alzheimer's patients recognize. While our histories accrete, theirs are thrown outward, lost.

The story is as much about origins as ends. The universe is formed, an orangutan (whom we met before in another incarnation) learns to say "Papa Cup," the narrator vividly remembers a children's story about a turtle written by his wife, Marie, many years before. The turtle lived along in "a time before Eden" (111). He sees a hawk, who tells him he is entirely alone (well, except for the hawk). This leads him to remember a box turtle named Harry who had lived in their garden years before, who was accidentally injured by a lawn mower. Amid these past memories, which are his alone--he has become the turtle of his own stories--Marie says "I want to go home." Stories accrete, but they also dissipate in the mind of one of their tellers.

When I was in Vancouver, Fred Wah and I talked briefly about the concept of "home" for people with Alzheimer's. It seems a constant, at least at some point in the disease. My mother wanted to be home for a long time, except home was not where I had ever known her, rather the place where she had known her mother and her brother in Ohio.

And so the narrator tells his wife that she has shared a home with him for nearly 60 years. But the home she alludes to more approximates heaven. When told that her mother and father are in heaven, she responds that she wants to go there. "But it has been a long time, and I don't know when this is going to end." In middle Alzheimer's metaphor and fact cannot be divorced. Home is a house and it is also heaven. (Middle Alzheimer's gives its sufferers unconscious access to Emily Dickinson's brain.) It's a shell that finally breaks.

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