Monday, December 27, 2010

Telephone conversations with my mother

--Hello. The weather's fine. I'm eating. Good to hear from you and to know that you're ok.

The breathing, sensing body draws its sustenance and its very substance from the soils, plants, and elements that surround it; it continually contributes itself, in turn, to the air, to the composting earth, to the nourishment of insects and oak trees and squirrels, ceaselessly spreading out of itself as well as breathing the world into itself, so that it is very difficult to discern, at any moment, precisely where this living body begins and where it ends. (46)

--Hello. Good to hear from you and to know that you're ok.

We can experience things--can touch, hear, and taste things--only because, as bodies, we are ourselves included in the sensible field, and have our own textures, sounds, and tastes. We can perceive things at all only because we ourselves are entirely a part of the sensible world that we perceive! We might as well say that we are organs of this world, flesh of its flesh, and that the world is perceiving itself through us. (68)

--Hello. Good to hear from you and know that everything's ok.

The differentiation of my senses, as well as their spontaneous convergence in the world at large, ensures that I am a being destined for relationship; it is primarily through my engagement with what is not me that I effect the integration of my senses, and thereby experience my own unity and coherence. (125)

--Hello, hello, I can't hear you.

Prior to the spread of writing, ethical qualities like "virtue," "justice," and "temperance" were thoroughly entwined with the specific situations in which those qualities were exhibited. The terms for such qualities were oral utterances called forth by particular social situations; they had no apparent existence independent of those situations. . . "Justice" and "temperance" were thus experienced as living occurrences, as events. Arising in specific situations, they were inseparable from the particular persons or actions that momentarily embodied them. (110)

--H e l l o?

In the waters that surge in waves against the distant edge of the land, still stranger powers, multihued and silent, move in crowds among alien forests of coral and stone . . . (49)


[Italicized language from David Abram's The Spell of the Sensuous: Perception and Language in a More-Than-Human World. NY: Vintage, 1996.]

[The other language is that of my mother's typical phone conversation for the past two or three years. In recent weeks, she has begun to drop the phone almost as soon as it's passed to her. Add in the sound of ambient noise: television, caretakers, gathered plates.]

Saturday, December 25, 2010

Blogging Blindly

[photo by Bryant Webster Schultz]

Yesterday, the Affect Theory reader arrived at our doorstep in a manila air-bubbled envelope soggy with the frequent rains of winter on O`ahu. I've hardly opened it, but suspect that it will be a good companion for two other books I've been reading this week, John Elder Robison's Look Me in the Eye, an Asperger's memoir, and David Abram's The Spell of the Sensuous, an argument for finding transcendence inside of nature, rather than without it. I have neither book in front of me now, as they have both migrated to my in-laws' house--one as a gift, and the other as a symptom of my forgetting. So I blog blindly, though "deafly" would be perhaps the better word, as these books are as full of voices as of images. Robison writes about his own voice as one that is recognizable to other autistic people for its flatness of affect, its cadence. His voice does not betray (consider that word!) his emotions when a crisis occurs; to the news of a neighbor's death, he might say "oh," instead of the listener's desired tonal shift upward, outward. Abram's affect is anything but flat, is as mellow as a Steinway's middle register. For Abram wants us to attend to the world as it is, and that involves the recognition that we can touch the world with our hands because our hands can themselves be touched. We are in a reciprocal relation with nature; it, too, has affect. It's a relation of mutual effect.

It would be too easy to say that placing these books next to one another, putting them in a boy-meets-cat kind of staring contest, might suggest that the contemporary world--infinitely mediated, placed at all the distances provided by iPod, iPad, iPhone--creates an autistic field in which we all lose ourselves to abstraction. There is something moving in the persistence Robison displays at learning how to be in the social, natural world. But this feeling becomes one of disturbance when you consider your last walk down a sidewalk where you were the sole unplugged-in traveler. I assigned my freshmen to take the Circle Island bus this semester and to write about it. "Do NOT take an iPod, and do NOT use your phone," I told them, adding with some measure of pedagogical sadism, "and do not even take a friend, unless you intend NOT to talk to them!" I wanted them to experience what Kathleen Stewart calls "ordinary affects," those that are as strong as they are sometimes cushioned in dullness. (I had thought my own ride dull for at least two hours, when the conversation I'd been overhearing for that long turned; the young man being described in such banal terms from Sunset Beach to Mililani became the abuser discussed in hushed tones from Mililani to downtown near Bishop Street.) So, at semester's end, when all the blog posts came flying in, last minute-like, I arrived at one about by a young man who related that he had started by making sure he had his iPod with him. Many of the narratives were curtailed suddenly with an admission that the author had, halfway around the island, fallen asleep. Many of their stories, vivid, annoyed, well told, simply fell off a cliff. And then I slept.

TheBus is a fascinating place because it is both a sealed container from which you cannot touch the outside world and because it is so utterly social (if not sociable) a place. It's like my writing perch, from which I see a sliver of the field behind our townhouse, a mown green lawn, alighted on by white egrets, the occasional dog (black lab, English shepherd), fallen palm frond, boy with bat, girl with soccer ball. Just a sliver of a view. The perch is more peaceful--usually--than a bus seat, and it moves more slowly. But it suggests to me that I can touch the outside world without really allowing me to. And it contains me in a space where my daughter asks me over and again to spell family names to write on packages she's making for Christmas dinnertime. I am inside and outside the game. The one promises peacefulness, the other is as annoying as it is ultimately gratifying (I'm useful; I can spell!). Oh, and there's the constant triangulator, the computer screen and keyboard, on which thoughts about these things form and then dissolve as the blogger box moves up, line by line. "Mom," my son interrupts, "I may have gotten the first cardboard cut in the world, ever," then comments on the cat (asleep), the packages (the visiting student's name is hard to spell), then reads the screen ("spell!") and, when I tell him I'm writing about him "right now," he sits. "Let's see!" he says, then smiles. "Anything?"

Maybe it's parenthood that taught me to write about what's happening at the very moment that it's happening, something a recent Ph.D. said that she absolutely did not want to do, because she wanted time to pass, measuring (in all senses of the word) her experiences of betrayal and loss. (I remember those days.) But it's writing the distractions rather than trying to evade them or even parse them after a decent interval has passed that draws me to blogging and, increasingly, to the activity of daily life. (In those days, daily life seemed dull, an awful Musak that went with the ceaseless search for abstractions that might relieve it.) A mixed state that is neither Abram's full-bodied experience of nature nor Robison's constant act of translation from outward chaos to his internal logic maker. A mixed state that sometimes leaving me wanting either extreme. The full-bodied is harder to achieve, what with the kids and the computer. The logical parsing of moments cannot be done with kids, and cat, and partner, and egrets to attend to. (You should meditate more, the raven says from my shoulder.)

It is perhaps no mystery that this mixed state of perception brings together what is lost (chronologically) in Alzheimer's. First the present disappears into the sometimes invented (collapsed) past, so that the past is what is and the present is what gets abstracted from it (perhaps). Later on, the past itself disappears and only the present exists. My mother looking over and over at a flower, at which she exclaims each time, freshly. Finally, the mind/body shut down until whatever (metaphorically autistic) perceptions are completely closed in and down. It's a wavering between states that is finally the states' withering away.

Where is the mystery in any of this attending to, caretaking the moment? Isn't it mystery that we often want, whether spiritual or plot-based? "So what happened then?" applies equally to God and funny French detectives. Where is the rock we're meaning to turn over to find the bugs and the scary snake? Mystery perhaps becomes less mysterious over time. The mystery is that being in all these things (even in the inability to be there, in Robison's case, or that of the iPod wielding bus rider) seems to make more of them happen. It's the mystery of my one semester of teaching when every book I taught came true in my daily life over the course of about six weeks straight. It's the mystery of love and hostility in the classroom. It's the mystery of how things cluster. Rilke's "you must change your life" becoming "you must apprehend your life," and your recognition (sharp or flat!) that there's as much drama in the second as in the first demand.

Friday, December 17, 2010

Writing Alzheimer's: More on Form(lessness)

My 11 year old son, Sangha, who is dyslexic and so not a great reader, has suddenly discovered Calvin & Hobbes; he follows my husband and me around the house, holding onto whichever volume of C&H he is reading, and performs the book out loud. No dreary droning here; he reads with expression, and then he belly laughs at the child-logic that the comic strip gets at so well. I've never been a reader of the comics, nor have I have read much by the way of graphic novels, of which C&H now seems an antique forerunner. But, on the recommendation of a facebook friend, I purchased Joyce Farmer's new graphic memoir, Special Exits, a formidable hardcover, 200 pages long, 13 years in the making, chronicle of the last years and deaths of her parents. (The video interview I've linked to there is well worth watching.) There is a cat, Ching, who plays the part of the stuffed tiger, Hobbes; Ching even has her own thoughts on occasion. But the book is decidedly not built for laughs. It's a stark rendition of what it means to be lower middle class and poor in this society, but also to have a loving family that throws itself into caregiving. A daughter cares for her parents during the last four years of their lives, as her mother gets Alzheimer's and dies after a fall in a nursing home, and her father dies later of cancer at home.

I know no graphic novel theory, although I assume there's a body of work on the form by now, in or outside the world of drawing. But I'm taken by the word "graphic." Not only does it refer to the

[and how appropriate that I lost what was here to the vagaries of blogger's forgetting so that what follows will be, in part, a reconstruction of missing pieces of last hour's thinking]

pictorial, the vivid, the distinctive, the lineated, but also to what hits the reader as disturbing, unforgettable. What is graphic cannot be easily forgotten. It seems an apt form for writing about old age, self-loss, Alzheimer's. The story works inside a form where moments are caught in boxes, panels, discrete pages with beginnings and endings. For the witness of Alzheimer's, the victim's forgetting is memorable, hence the outflux of memoirs about the subject in recent years.

I've been thinking about writing Alzheimer's in recent blog posts, and especially about formal questions. How do we convey this subject matter in form? How can we use form to evoke the illness's affects and effects? So I sent a link to my recent post to Goro Takano, whose With One More Step Ahead is a novel whose narrator is demented, and asked him to share his thinking with me. He has kindly given me permission to quote from his responses to my questions. (Because I do facebook in French, the temporal markers may appear odd.)


Goro Takano
13 décembre, 04:21 Signaler
Hello again --- To be honest, there doesn't seem to be much left for me to add to your thoughtful post, Susan. All I can think of here is as follows: If I were you, I would strongly argue that a narrative about Alzheimer's should be the one saturated all over with a memory loser's worldview and, therefore, should dare to be vague about everything. It must be a matter of course that the past and the present are mingled with each other in it. Likewise, happiness and sadness should be rather indistinguishable in it ("mixed," in your words). What's more, a caregiver's point of view should be as deeply blended as possible with that of the cared. Even the meaning of a "home" for the cared should be more or less described vaguely --- So, it should seem sometimes heaveny and sometimes hellish. Every relationship among, say, Characters A and B and C should be protean and interchangeable --- "He" has to become "I," "you," "we," "she" and "they" in an instant and without any reasonable prelude. What do you think? Is this suggestion okay with you?
Goro Takano 13 décembre, 04:26 Signaler
In my above comment, I said that "a caregiver's point of view should be as deeply blended as possible with that of the cared," which means that every character in the narrative, whether originally Alzheimer's or not, should be rather seen as a dementia holder.

[And here Goro describes his new work:]

My new story is about a Japanese aged male novelist who realizes that he is gradually falling into a heavy case of senile dementia. He decides to write his "last" novel, and my whole story is actually what he is writing now.

Once he finishes writing the first chapter, he forgets what he has written. And he starts writing another first chapter (which is totally different from the one he has written before), and he repeats this first-chapter writing almost endlessly, assuming that his story is somehow in progress. In other words, every chapter in my novel will be titled "The First Chapter." And each chapter is confusingly self-reflective and linked quite awkwardly with one another. In the early chapters, the relationships among the main characters --- the protagonist (who is an aged Japanese novelist named Goro Takano --- Is this me? Is this the author who is writing this "last" novel? Or, is this the protagonist of the "last" novel?), his "double" (whose name is Fumio Takano, which is also Goro's penname), his wife (Yoko Takano), his editor and others --- seem to be pretty much fixed, but as the story progresses(?), they begin to be weirdly overlapped and the reader wil begin to be awfully confused about who's who. That is partly why what I'm writing now seems to be even beyond me. But this awkwardness may be the story's primary quality. I'm now writing it in Japanese --- Hope its English translation will be someday published and reach you in US...


Where Joyce Farmer's memoir is graphic, Goro Takano's work is anti-graphic. Where Farmer draws unforgettable lines and characters, Takano deliberately makes his forgettable, because his characters are distinguished by their forgetting. Farmer's memoir is very material; she writes about the duties of caregiving, the laundry, the bathing, the taking to the hospital, the anger at authorities, the health system, and so on. Takano's take is immaterial. The contents of the mind in the process of dissolution is something that happens not simply to his characters but also to his readers. The point is to blur the lines, dissolve the squares, unbox the text.

Both these strategies are incredibly effective. I find myself drawn to both in nearly equal measure, as if to a wavering between Reznikoff and Stevens, Rukeyser and Dickinson. In my Dementia Blog I think I attempted both the objective path of the witness and the subjective blurring of story by way of the blog's backwardness. In any case, as Goro writes, we who experience the illness from any perspective are all "dementia holders." How we release our knowledge, whether graphically or anti-graphically, matters less than that we share it with the lucky (and increasingly few) who do not yet have it to hold.


Some good poetry news. My poem, "World Cup," about the slow fall of an Alzheimer's patient to the floor, will be choreographed and danced by the Bellingham Repertory Dance Theater in April, 2011. The poem comes from Old Women Look Like This, a free e-book. The Bellingham Reportory Dance Company can be found here.

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.