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.

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.

"She had a dog in the past": Mother news, November 21, 2010

[What follows is today's message from a social worker who visits my mother. An earlier message from this month can be found here.]

__________

Martha was sitting in the living room not doing anything. I came today with a stuffed dog which was quite cuddly. When I offered it to Martha she immediately took it out of my hands and wrapped her arms around it. When I asked her if she had a name she said she did but unfortunately said it so low I couldn't hear it. I stayed for awhile and pet the dog with her. She told me that she had a dog in the past. I hope this gives her some joy.

Martha's weight is stable and she continues to carry on the same.

__________

Yes, she had a dog to whom she had given many names. I wish I could remember them all, and recite them to you with the same delight she once chanted them to me. The sequence of names included a creek in western Pennsylvania (or was it eastern Ohio? as she lived there, too), and ended with "O'Mallary O'Keefe." The portrait of two dogs above is signed with her maiden name, M. Keefe, '38, which would have been the year before she graduated from college. In the dogs' eyes you can see something of her wit.

Just now I googled "creeks in Meadville, Pennsylvania" and then "creeks in "Canton, Ohio," and found nothing so multisyllabic that it could be one of the names she had given to her dog. John Emil Vincent, who studies library science, tells me our very culture has Alzheimer's; no digitized materials last longer than five years, he assures me. Then you have to pour in more money to copy the information, the articles, the books, the archives, into another format. Has google already forgotten the name of the creek, as I have forgotten the dog's name?

I do remember that my mother's mother had her dog put to sleep while my mother was away. The deed was unforgivable. I do not know that it was the same dog, a collie.

__________

[An hour later] I found the creek, by googling "creeks near Meadville." It's the Cussawago. Here's a picture of it in the snow in 1957, the year before I was born.



This image is from the California Museum of Photography. There's place, and then there's the archived place.

So it was, perhaps, Cussawago O'Mallory O'Keefe, except there was yet another name, a first name. I will have to rely on my own memory to retrieve that one.

What we teach when we teach creative writing

Let me share a creative writing success story with you.

I was teaching 273: Creative Writing & Literature, an introductory class where students read analytically and write creatively. We were reading Craig Santos Perez's from unincorporated territory, a book that isn't an easy read at any level. I was having them work in groups with their laptops to look up terms and references, and we were blogging with Craig. Students would ask questions, and he would pop up with answers. Craig is not a pompous guy. When I asked the students what they'd taken away from their exchange with Craig, they responded: "he's like us!" Not what I expected, but a wonderful perception. The poet does not hearken from a different life form; he is one of us.

I've chosen this story, not one about a student's wonderful poem (I get those, too), because many of the successes in my creative writing classrooms--especially on the introductory levels--have less to do with finished products than with perception, what one of my facebook correspondents calls ATTENTION. (My question about what we teach when we teach creative writing elicited a wonderful comment stream on facebook; I'd like to thank everyone who wrote a comment on my wall.) My Foundations of Creative Writing class this past week thought about issues of pedagogy. They were split between those who liked their reading for the week, the experiment-based approach of Hazel Smith's The Writing Experiment. These students took exception to her claim that everyone can be taught to write. One student thought her approach "soulless," and wanted a course that included a basis for compassion.

I began teaching creative writing in the mid-1990s. I was hired as an academic to teach "20th Century Poetry in English," and moved into creative writing several years later. At the outset, I too was worried that creative writing could not be taught, or that the less-than-wonderful-writing I was bound to harvest would somehow influence my own, according to some odd contagious lack of magic. But I've come to love teaching the subject (insofar as it is one), but perhaps not for the reasons I would have expected.

And why have expectations? The terms we use in talking about writing are so ambiguous (even in their earnestness) that they are as hard to hold onto as a greased pig on a pole. Even the seeming certitude of a word like "craft" slips out of its holster as soon as you start looking at poems whose content is cliche. Words like "emotion" and "heart" and "expression" seem to make sense until you use them in a sentence in class to a group of 18-22 years olds, or even to the occasional senior citizens who grace the classroom. The problems are manifold. Here's a list of a few of the problems I (as everywoman CW Pedagogue) have faced:

--Students have not read much literature, poetry, fiction, or drama.

--Students have a notion that creative writing equals "freedom of expression."

--Students themselves believe they are not writers and cannot be taught to be writers.

--Students think that writing is about a very limited set of subjects. In poetry these might be feelings--love, depression--or family or vague ideas.

--Students think in blocks of words, phrases rather than in images, details, particulars, sounds, syllables.

--On the upper level, student assumptions are stronger, harder to contest; there's a lot of resistance. Such resistance can be good or it can simply get in the way of playing around.

--Students have forgotten how to play.

That last item is crucial. As any creative writing teacher knows, students are scared. And why not be? The semester is only so long, and risks often lead to worse grades than do tame attempts to fulfill the assignment and move on to another. For me to say "take risks!" is also to suggest the possibility of jumping off the cliff of assessment, which is also a necessary mystery to creative writing students. "How will you grade our work?" is one of the FAQs.

So if I think through how I present creative writing (at almost every level, but in different ways), I try to do the following:

--Break the ice. Start from an exquisite corpse and keep playing. Have students make collages, get on the floor with scissors and glue, do Bernadette Mayer exercises several times a week, limber up. Make sure the class is loose, laughs a lot. Set that model of compassionate action, if not by approving of everything you read. Challenge students to address their favorite subjects in new ways.

--Begin with the material, which is language. Content is very important in creative writing, but don't start there. Writing block lurks around every corner, or its false antidote, the cliche.

--Move into content by using themes. I've taught several courses in Poetry & the City or Poetry & Place, which channel students into working on subjects they think they know but do not. Having them write about their neighborhoods tends to prove to them that they are not paying close enough attention to what is in front of them at all times.

--Have them read books. Not poems, but books of poems. Or novels. Or memoirs. Something whole, not chopped up. A book that shows writers as perceivers with stamina. Have them write about the reading (on a blog, say) and talk about it at length. Break them into groups and have them "teach" the reading. Insist that they google words they don't know. (I have been putting off a student the past couple of weeks who asks me over and again what the term "eminent domain" means. Every time she asks, I tell her to look it up.)

--Have them talk to authors, however they can, either on Skype or on a blog or in person. Direct contact makes it clear to students that writers are people. It's sometimes hard for them to realize this, when they've been told how great Shakespeare and Milton were. Those guys are dead, and besides, dey wen nevah talk da kine.

--Have them write about familiar subjects in vocabularies not usually associated with them. OK, write a love poem, I might say, but use the vocabulary of a social science class or physics or car mechanics. Write a poem about feeling badly, but never tell us that's how you feel except through the language of the Hawai`i Tourist Bureau. Ah, how cliches can be turned on end and used to good effect! Have them write in other languages they know, are learning, or have partially forgotten.

--Have them walk around the halls of the classroom building, or around their neighborhoods, finding language on the walls and then return to the class to write with these found words. Have them go to a pond on campus and take notes. Tell them to go sit in a public area and eavesdrop. Make sure they realize that all language is up for grabs, not just narrow bands of it that include flowers and clouds.

--Make sure you explain that writing can be offensive, but needs to make a claim on the reader that is not merely shock value. This one's tough, but I learned the hard way in a class of young men who all seemed to want to write about rape and violence. Limits are ok; you just need to explain them and then hold fast.

--Be prepared to argue, especially with graduate students, and to meet resistances. You will remember feeling your own resistances. You still have them, but cannot hold them against your students. If a student wants to write out of a very personal point of view, don't shut him or her down, but suggest ways to speak to an audience of more than one. Even if we write "only for ourselves," we want readers and those readers are not ourselves, so we need to touch something in them that is not ours. That place of not being ours is also sacred.

Above all, since not all of your students will continue to write, make sure that they use their semester with you to discover how to look at the world, really attend to it. (An attendance policy is also recommended.) If all you do is have them write a haiku in which they see--actually see--a frog or a turtle or a lily pad or someone's facial expression, and then make a quick shift to abstract statement, one that may be quite amusing, then you have done something. Then he's not like you so much as you are also like him!

Job opening at University of Hawai`i-Manoa

Please send around.

ASSISTANT PROFESSOR OF ENGLISH, Poet and/or Novelist, full-time, tenure-track position in Creative Writing starting August 1, 2011 (position number _____ ); position dependent upon funding and availability. Teaching Duties: teach introductory composition and literature courses as well as upper-division and graduate-level courses in Creative Writing, as well as courses in literature; 2-2 teaching load first year and at least one other year during probationary period; 3-2 load in other years. Minimum Qualifications: Ph.D. or M.F.A. in English; with strong publishing record. Desirable Qualifications: creative and teaching interest in any of the following areas: Hawaiian and/or Pacific literary traditions, international literature, non-realist writing, gender and sexuality, mixed genres, translation. Salary: commensurate with experience and background. Send letter of application and CV to Professor Jeffrey Carroll, Chair, English Department, University of Hawai‘i at Mānoa, 1733 Donaghho Road, Honolulu, HI 96822. The University of Hawai‘i at Mānoa is committed to equal opportunity and affirmative action. Closing Date: December 1, 2010. Initial interviews will be conducted at MLA in Los Angeles in January 2011

Mother news

Every month I get a note from a social worker who goes to visit my mother and reports back to me. Most of these notes are fairly undetailed: "I went, she seems much the same, hope this helps," is a typical message. But today's note went as follows; it includes the news (is it?) that "Martha when called by her name will answer, but she can't identify herself as Martha."

Dear Susan:

Martha was in the living room sitting next to 2 people. I gave her a hearty hello and when I said "hello girlfriend" she laughed.

One of the people sitting next to her was Janice, the same name as me. Kidding around, I said "her name is Janice, my name is Janice and what is your name?" Martha answered, Janice. A couple of minutes later I asked her her name and she said she didn't know. (She was serious). I think Martha when called by that name will answer, but she can't identify herself as Martha.

I then touched her nails and said how beautiful they looked. She snapped them away. I forgot that she does not like to be touched in any way. I apologized and repeated how beautiful her nails looked.

The aide said that everything is status quo. Martha occasionally goes to an activity but its less than more. Before I left, Martha said everythings fine.

Re-entry: Gerontology, & an email to State Sen. Hee

Yesterday, sandwiched between conferences with my composition students, I went to Fook Yuen restaurant in McCully (for you bilingual punsters, it's located very nearby the Phuket Thai restaurant) to speak to a group of people who work in gerontology and aging. Aside from the organizer, Michael Cheang, the group was mainly older women who had earned their caregiving spurs (as it were) over decades of personal and professional work. As requested, I talked about my writing about dementia, and read a few pages from Dementia Blog. During the reading, diners at the next table down in the restaurant erupted into a loud conversation about root canals. As ever, I was impressed by the density of stories and images, their humor and pathos:

--One woman had just gone on a cruise and discovered that the cruise company now caters to the elderly. You could get dialysis treatment on the Dutch ship and have it covered by Medicaid.

--Another woman had a story about a man who wanted to die and be buried at sea. So as the time approached, he was booked on an around the world cruise. Everyone at the table had the same question: "and did he die?" Yes, he did, and his body was put to sea in a burlap bag.

--"What do you do with the hoarders?" another woman was asked. After saying she used patience and love, she spoke of a woman who lived on a thirty year pile of stuff, naked, surrounded by the corpses of dead cats. Her first effort to engage with her involved organizing a burial for the dead pets. (Again, I wonder about the connection between Alzheimer's and the work of Samuel Beckett, Gertrude Stein: did they have relatives who suffered the disease?)

--Someone talked about a study done on a woman with dementia who had meditated for many years and was aware of what was happening to her. She made a pact with a friend to help her die when she said it was time. The friend could not follow through. The woman with dementia, aware of what was happening, kept begging to die.

--The woman next to me asked a man on one of his clear days what it was like inside his head. "It's like scrambled eggs," he said. Some days thoughts got through the scramble, other days they did not.

--To the families of the demented, one woman suggested saying, "you're speaking to a disease. This is not your mother or father." To which, after a night's sleep, I would respond: "it is your mother and father, but they've changed." It's not only their body, but also some element of them-ness remains, even at the end. But the point remains that we cannot act toward them as we had toward their previous incarnation, as parents, as care-givers, as independent beings.

I appreciated the opportunity to take my work into the community. Kaia Sand and I talked a bit when she was here about getting our poems out into places where poems don't usually travel. Her walks through Portland are an instance of community work. My conversation with care-givers and gerontologists was also, in a much small way than Kaia's, a moment of community outside the world of poems.

I am always humbled by these stories. My book, based as it is on my mother's experience of Alzheimer's, works over long distances. I have never been my mother's caretaker; I have watched others give care. I have been given the freedom to observe, and retain the hope that observation, too, is of assistance--if not to my mother, then to others going through the experience of watching a loved one deteriorate. But caregiving can be an extended act of heroism, even when (as is probably inevitable) the caregivers responses are not always perfectly patient, absolutely loving.

__________

When Secretariat won the Triple Crown, Time magazine put him on the cover. I vividly remember a Letter to the Editor the next week. "Thank goodness you're showing us the front end of a horse for once, not the back end." It was during Watergate, or so my gauzy memory tells me.

Many people associate politics and politicians with horse shit. Little did I realize, as I waved signs for Neil Abercrombie this past Tuesday, that the metaphor would become so literal, so in my face, so smelly. As a few of us were waving our signs and chatting, who should come up the rise but State Senator Clayton Hee on a white horse. As he dismounted, we could see that he wore boots, that his spurs were shining in the hot light of afternoon. He and his horse stood on the street in front of us for a time, and the children approached to pet the horse. Well, the horse (Jessica) pooped. Right in front of us. Hee and his horse disappeared, but the poop remained. So I have written the following email to Mr. Hee. (There's nothing political about this; he and I are both Democrats.)

Aloha Clayton--I was waving signs near Ahuimanu School when you appeared on a white horse. Certainly not what I expected from a day of standing around. But I just wanted to suggest that the next time your horse shits in front of a group of sign wavers, that you pick it up. We stood there for the rest of the day staring at it and smelling it. Of course we could have probably picked it up, too, but it was your horse.

thanks, Susan 

[I received a reponse from State Sen. Hee, as follows:

Hi Susan:

Thanks for your email regarding last week Tuesday afternoon. I actually came by later in the day for the purpose of picking up for the horse. While I wish I could have come back sooner the ride home by horse takes place in its own time. Along the way, several youngsters happily took turns doing what they don't have the opportunity to do - ride a horse.

I apologize to you that I could not come back sooner. I also apologize to you personally that you had to endure the smell of horse manure or "shit" as you call it. Nonetheless, your suggestion is one that I support.

Thanks again for your thoughtful email.

clayton hee]