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.

CODA

[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.

OLD WOMEN LOOK LIKE THIS: notes toward a talk

The announcement goes like this:

Susan Schultz on Writing Alzheimer's

September 23, 12:00pm - 1:15pm
Manoa Campus, Henke Hall 325

---

The University of Hawai‘i at Manoa Center for Biographical Research Brown Bag Biography presents a lecture, "Old Women Look Like This": Writing Alzheimer's," by poet, publisher, editor, and UH-M English professor Susan M. Schultz

The talk will go something like this:

I was invited to talk about my recent e-book, Old Women Look Like This, which is available through Lulu, and was published by the Argotist Press, edited by Jeffrey Side out of Liverpool, UK.

Quala-Lynn Young, at the Contemporary Museum, organized a tour for writers last year, which was followed a couple of months later by a reading of poems based on the work of four artists. Having written Dementia Blog, I was most taken by the portraits of old women by Elizabeth Berdann, for their fidelity to their subjects. Here are some of her paintings. Edna is the woman whose face appears on the "cover" of my e-book. Each portrait bears the first name of its subject, along with her age. Edna is 91. (Old people, like children, are quite concerned with their ages; "I'm 86!" one of my neighbors said to me recently. Her dog is 12, she also told me.)

Elizabeth Berdann's paintings of old women

The poem I wrote for the museum event was based on several of these paintings. As I thought about the ways in which old women are seen in our culture, I thought to do a google search, "old women look like." When I did it, the results were (of course) profoundly strange. I found sites on how to appear younger, sites on how to appear older, pornographic sites, and sites about men who look like old lesbians. So I decided to write the poem by alternating brief descriptions of Berdann's faces with text I culled from my google searches. Here is the search: note that the current search includes the e-book itself, which is at once flattering (if anything computer-generated can be said to be so) and odd.

This method of writing takes something from a poetic movement that has grown in the past ten years from a joke to the subject of conferences, papers, and loud arguments among poets. It's called Flarf. For some writing about flarf, see this link, Flarf.

Some significant moments in the verbiage about flarf:

--Gary Sullivan's definition of "Flarf" as a verb: "To bring out the inherent awfulness, etc., of some pre-existing text." He brings up heavy use of Google.

--Mike Magee: "The use of Google being extremely common, the flarf method resembles in some sesen: a) the use of a thesaurus; b) eavesdropping and quoting; c) sampling; d) collage / cut-&-paste . . . What makes the flarf methodology different, to my mind, is the willful democratization of the method: the EXTENSIVE and even sole use of Googled material."

The best book of Flarf, to my mind, is K. Silem Mohammad's Deer Head Nation, which uses this method toward a (farcical) critique of American culture, focusing on the deer heads that people put over their fireplaces. But I didn't want farce so much as a commentary on the way old women are looked at, so the tone of my poem alternates between the google search's shtick and my own rather less absurdist takes on the women's faces. Part of the poem came out in the Honolulu Weekly; you can see it here:

and a snippet here: "She floats there, her neck rooted to the soil of its own shadow. Women talk openly about their sex lives after 60; I passed two women who held hands the way I imagine widows do. There are men who look like old lesbians on [cracked.com], but on the plus side, I look a lot younger than my age, or those who become senior before their time. Rose (90) has wide astonished eyes, hair a white nest; absence where her neck should be; she is all heart at the heart of her frame."

The move is from a Romantic poem image ("the soil of its own shadow") to the on-line source material, and then back again to hearts. (Berdann's frames are hearts and diamonds, so the play is on the frame, as well as on the literary frame/cliche of "heart.") Some of my lines are less Romantic (one is about the frame creating a baseball diamond out of the woman's face), but they are never "flarfy," in the ways the google materials are.

[read the entire poem at the talk]

I began to think less about image than about narrative, the stories we tell about old people, the way in which our narratives often fail to fit their lives, because our stories are more about children and about younger people. When I remembered that Sandra Day O'Connor's husband had fallen in love with another woman in his Alzheimer's residence, and that O'Connor was pleased because her husband seemed so happy about it, I turned to the computer again and found a soap opera generator. I took some of the short scenarios offered up by the generator and shifted them into the Alzheimer's home to see what would happen. The poem begins with an old woman stalking an old man (there are so many fewer of them in Alzheimer's care than women) and ends with a shotgun wedding based on the birth of a grandchild. The ways in which so many of our narratives depend on biology (who is the parent of whom is assumed to be a question about DNA and not about adoption) is made clear in this odd intervention. (Another of the poems is based on lists of children up for adoption, except that I substituted Alzheimer's patients for the orphans.)

[I just checked my email and found an ad for Botox, to get rid of the dark circles under my eyes, RISK-FREE. I'm told that 89% of those who use this product get compliments from their friends about their lack of wrinkles and bags.]

Another kind of narrative of old age and death is the elegy, which celebrates a life as it passes on, substituting a transcendent truth for the transient messiness of a life. One of my favorite elegies is Wallace Stevens's "To an Old Philosopher in Rome," a poem for George Santayana. An honors student of mine, Gizelle Gajelonia, had written nearly an entire thesis out of poems by writers such as Stevens, which she willfully "revised" into poems about TheBus on Oahu. Her take on Stevens is "13 Ways of Looking at TheBus," after his own "13 Ways of Looking at a Blackbird." Unlike Gajelonia, Stevens never mentioned Mufi Hannemann and his rail system in his poem! So I thought I might do a revision of Stevens myself. Here's Stevens's poem about the dying philosopher; I'll read just the beginning and the end, but you can hear the high seriousness and beauty of his language.

I hollowed his poem out and replaced much of the language with parts of a recent report by the Alzheimer's Association (2010). To Stevens's "The threshold Rome and that more merciful Rome / Beyond," I countered with: "The threshold, ManorCare, and that more // merciful ManorCare beyond" and with lots of statistics about Alzheimer's sufferers and their caretakers. My poem ends:

monthly check (to the tune of $6,000) for room and board and hair styling

and medical care. It is a kind of total disruptiveness at the end with every

visible thing diminished and yet there is still a bed, a chair, a common room

for conversation, a nursing station, and a nook with benches for sitting on:

The moving walkway is now ending. Watch your step.

Stevens is also obsessed with the ordinary things: the bed and the chair come from him, as they also come from my mother's Alzheimer's home. But his "total grandeur at the end" becomes "total disruptiveness," and the threshold of heaven is reduced to a "moving walkway," or a kind of temporal treadmill that the very old move on in their own version of timelessness. Not transcendence, but a different (imitative, fallen, non-Platonic) version of eternity.

The poems that work the best for me are those I wrote in response to the standard comparison of old age to childhood. I have a mother who is 92, and children who are now 9 and 11, so I feel qualified to test the simile. So I began rewriting the children's stories I encountered as if their heroines were not children, but very old people, people with dementia. One such piece I based on Are You My Mother?, a book about a small bird who is looking for its mother. The bird asks all sorts of animals if they are its mother, but they all tell the baby bird that they look different. "I'm a cow, not a bird," would be one response. So the bird finally finds its mother bird, and all is well. A Mother for Choco revises that story for adoptive children. In this story, it matters not who resembles whom, but who loves whom. So the orphaned baby finds that her mother is a bear and that mama bear has other children, including a pig. I made my own mother the central figure in this piece, which I'll now read. "Are You My Mother?"

Another of these pieces is based on a news story about the first black woman elected to the South Carolina legislature (in 1974) who died alone in her house of hypothermia. She was suffering dementia, but would not allow anyone to help her. So I rewrote the opening to Pippi Longstocking to be about her. Here's a description of Pippi, for anyone who might conceivably have missed her. Pippi is all those things we admire: she's independent, naughty, answers only to herself, and she has lots of fun in her solitude. She's like a wacky pig-tailed Henry David Thoreau in a way, except that she also has friends.

My rendering of Pippi changed drastically when I moved Juanita Goggins into Villa Villekula, Pippi's residence. Here's that piece; much of the language comes from the Pippi book. As you can hear, the narrative of joyful self-reliance goes bad when Pippi is replaced by this old woman who suffers dementia. She needed to rely on others, but could not. They refused to knock her door down, and so she died in her house, the good American's castle.

I don't necessarily want to end on a despairing note, although there are plenty of those in the world of Alzheimer's patients and their families. But I hope that the playfulness of the poems, their forms, the waywardness of their narratives, also gestures toward the humor that can be found in a day at the Alzheimer's home. It's a humor based on the play of minds that can do nothing except play. The last time I spoke here, about my book on my mother's dementia, I made a bad metaphor. I said that Alzheimer's was like a neutron bomb, which destroyed everything but the body of the building or the person. Someone came up afterwords to remind me that Alzheimer's patients are persons. I hope that this project has gone some distance in reaffirming that sentiment.

I would love to hear responses to the work, and to take questions about it.