Lynn Young's _Where's My Rispick?_ is out from Tinfish Press

 
This beautiful, and beautifully hand-made, chapbook comes in a limited edition of 100 copies. "Ritspick" is Alzheimer's English for "lipstick." Please see here for more details, and a button to push to purchase the book for the very low price of $16:
http://tinfishpress.com/?projects=wheres-my-ritspick

A short essay on Alzheimer's & Aliens

ka mate ka ora: a new zealand journal of poetry and poetics includes an essay by me on Alzheimer's. (Please click to see the essay!) This issue comes out of a conference held earlier this year in Auckland on poetry and social action.

Christopher Parr has a response to the conference that includes a critique of my work--not the essay but the documentary writing--to which I intend to respond soon (though I'm very happy to see it).

Here is that section of Parr's essay:

The speaker I heard most willing to push the envelope for social change through poetry was Susan Schultz, in her explication of texts generated in part by her mother’s verbal disorientation because of Alzheimer’s disease. Perhaps appropriately, she presented a serious challenge to me-as-audience or reader. By appropriating scrambled sayings and disjointed speech patterns from her mother and others with that debilitating disease, Susan was certainly expanding the range of what ordinarily gets included in poetry, and in regular language use, so she was again questioning the boundaries of ‘the social’ and what constitutes social action in communication. I found myself made uncomfortable by this source of practice, without being sure I should be. The problem had to do, I thought at the time, with whether her mother could and would truly choose to consent to her mis-speaking being used like this.

On reflection, I think it may really have to do with appropriating unintentionally impaired speech from someone else. I am myself a fan of appropriation strategies and have indeed used found speech and language, and I readily concede that in most if not all instances we writers use such found language without the consent of the initial utterer or writer. But usually the utterer has a choice whether to have said or written what we appropriate, no matter how discombobulated their utterance might have been.

In the case of an Alzheimer’s victim – or, I reflected, of my own mother who has survived a bad stroke but has serious though not total aphasia and at times gets words very scrambled – we can see brain impairment causing them to say something which is not what they would want or mean to say, were they not impaired. Yes, such utterances are thus language in the world. But poetry as art is (by definition) a form of display. So does one honour the person whose scrambled speech, caused by brain impairment, one displays in texts presented as poetry? Or, since they may not truly identify themselves with what is coming out of their mouths, is something less than honourable going on in this appropriation? I am raising this as a genuine question, definitely not as an accusation, since I see a number of variables involved in getting an accurate picture of what the practice is, including seeking consent. Happily too, I know I am raising issues that arise in the avant-garde, a context that exists as much as anything to highlight discomforting matters, especially about boundaries and acceptable or admirable practices. Susan’s work takes its cues in this regard from those like the Dadaists – both in the derangement of language and its ways of making sense, and in terms of what experiences we humans have and pay attention to, in order to be aware of our capabilities for awareness. My own anxiety is that the issues Susan raises for me are moral ones, more than aesthetic – but then, that would surely come with the territory of ‘social action.’  



Thank you to Michele Leggott, Lisa Samuels, and Murray Edmond for making this possible, and to Pam Brown for being herself in Auckland, as she everywhere. She was one of the featured speakers at the conference. Here's to you, Pam. The ad for Ryan Higa ain't bad, either.

The dream course I neglected to send: Literature of Alzheimer's

Curious that I hadn't heard a verdict on the graduate course proposal I thought I'd put in several months ago, I was told that I'd not sent it in.  Found it in my "drafts" folder, unsent.  The course is on Alzheimer's and literature. Might re-tool it for an honors course next year, or simply frame it. Posting it here, in case anyone might want to cannibalize it for their own purposes. Courses like this one are needed, at every level and in many departments.

Graduate Course Proposal

Prof. Susan M. Schultz

October, 2013

Literature of Alzheimer's

According to the Alzheimer's Association, five million Americans are living with Alzheimer's disease or other dementia. One in three seniors dies with the disease. By 2050, the disease will cost the USA (alone) over one trillion dollars a year. Recognition of Alzheimer's as a disease has inspired a literature of and about it, including novels, poetry, and memoirs. But it also provokes the reader of Modernist and Postmodernist literature to reconsider works of literature by Gertrude Stein, Samuel Beckett and other writers whose use of language often resembles that of someone suffering early to mid-Alzheimer's. It asks readers to consider how different cultures approach the disease. It provokes the consumer of popular culture to take a close look at television shows, movies, and advertising that engages with Alzheimer's. It demands that the citizen look at parallels between the ways in which Alzheimer's sufferers and “illegal aliens” are described in similar terms, and similarly (in some ways, if not others) are put in “homes” for their and society's “safety,” and to prevent them from “wandering” across “borders.” It asks questions of the scholar of life writing about how best to write about the illness. And it asks questions of all of us about identity issues: what makes us human? Is there a point beyond which we are no longer ourselves? Why are most of us so afraid of acquiring Alzheimer's? Are we the sum total of our memories, or are there another bases to our being human?

This course will address these issues by engaging with literature (and film) of and about Alzheimer's. Students of literary history and creative writing will be invited either to work toward a final critical project on literary works, or toward a creative project (poetry, fiction, memoir) that uses Alzheimer's either as content, as theme, or as manifested in language use. We will have visitors from Gerontology and Disability Studies, as well as a field trip to an Alzheimer's home. There will be a final project of 20 pages of writing, as well as blog posts every week, and a significant amount of reading. Students will be asked to lead discussions and to report on Alzheimer's related writing they find in the mainstream media and on-line.

Readings will include books (or selections) by Daniel Schacter on how memory works and files; Jesse Ballenger on the history of Alzheimer's in the United States; Gertrude Stein (and an essay on her work by Michael D. Snediker); Samuel Beckett's Rockaby; Don DeLillo's Falling Man; Thomas DeBaggio's Losing My Mind (a rare memoir by a journalist who had Alzheimer's); David Chariandy's Soucouyant; Lawrence Cohen's No Aging in India: Alzheimer's, the Bad Family, and Other Modern Things; Poetry/Shi (Korean film with Alzheimer's theme) and other video projects; B. S. Johnson's experimental novel, House Mother Normal; Catherine Malabou's philosophical projects, The New Wounded: From Neurosis to Brain Damage and What Should We Do With Our Brain? While, as a rule I do not teach my own work, I would consider asking students to read one of the volumes of my two volume mixed genre series, Dementia Blog.

AMOUR & emotional memory

The man of the couple in AMOUR, which I watched on a tiny seatback screen on the flight from Dulles to Honolulu the other day, tells his wife a story. Neither he nor I can remember the content of that story. But he tells her that what he does remember are his emotions then, emotions that carry over to the brief present-tense of the scene.

I spent a week on the east coast this month, mostly in D.C. and Virginia, where I grew up, and where my mother's Alzheimer's home was and is. Bit part stories floated up as I drove here and there, mainly stories of childhood set in places that resembled where I was now, but have changed considerably. White people in NE DC? Metro being built out to Tyson's Corner? The very maps had altered, as had I, though my experience of the place was like a palimpsest of old and new tenses. Less narrative than emotional. Cycle and recycle of feeling.

My mother's Alzheimer's home has changed, too. Decor less Ethan Allen furniture store-like than before, more contemporary. Colors more vivid, wall installations to touch and make sounds with, a mock hobby shop in one corner, and a new name for Country Lane, where Martha lived not in room 9 (as I wrote in my book) but in room 11. Never was good with numbers. Sylvia now uses a walker; she's still playful and can read (though what content there is to the sounds we can't know), but she's more frail, less fiesty. No more asking for cab fare out. No more talk about da stoah. No more handbag bursting with fruit. Gone are Florence, with the lovely sweaters and the constant non-narrative, and Estella, who yelled "NO CHEESE" at every meal. Gone are others I can hardly remember. Present still is Thea, whose daughter was pleased to hear of her mother's compassion when mine died, two years ago almost to the day of this visit.

A death fantasy that is not my own. Proviso that one would need not to have family responsibilities, just oneself. Buy a boat, fill it with drink and smoke, fill the tank with gas, and drive it as far as the fuel would take you. Enjoy a last party. Make sure not to leave a mess. Go off, before dementia came to meet you, came to steal your fantasy.

At the Hirschhorn a large installation in a small room with a very high ceiling. Inspired by a man in Philadelphia who pinned notes to himself all over his house. The room's floor is waxed, but there are slips of paper underneath the wax. Don't wear shoes. The walls are covered with notes, most too high to read, some too low to get at. Each note the size of an index card, but on slighter paper, pinned to the wall with a single steel pin. A fan at the entrance, one that moves back and forth. The slips of paper move with the air, make the sound of an auditorium full of students with thin papered Nortons when the professor gives them a page number. The slips I read, which were at eye level, were about a strike, labor. Others were quotations, one from Proust.

I left the room, put on my shoes.  "Miss Tina, Miss Tina" a guard kept saying. He was looking at me. He thought I was his English professor from Temple. We talked, sensing the connection that so often comes of accident. It seemed we were both going to Philly that weekend, he to play basketball, me to read from my work about losing memory.

Rachel Blau DuPlessis and I walked Philly, talked Philly (with Brian Teare and Bob Perelman/Francie Shaw and others) and I read from DB2 at the Penn Book Center. Then the return to DC to read in the In Your Ear series, and to see friends again.

I'm now on Maui with my daughter and her soccer club (yesterday she had a breakaway goal and a fine assist). Back in the present tense, albeit on another island. Emotions yanked back to now, which is not to say they are any stronger. The emotions involved in time travel seemed more intense, as they were so involved with what was not there. We are here, now. The mynas are screaming, the weed whacker has gone, children's voices fill the hallway.

The man in AMOUR smothers his wife after telling her a story from his childhood, stroking her hand as he does.  On-line comments from "he's a Nazi" to "what an act of love." He grows more and more isolated in his caregiving. His wife loses more and more of her spite, which seems a large part of who she was. There are no judgments to be made. Should have could have doesn't exist in such extremity.

de

"You see I've always been a rather dull-spirited winch": Ashbery & Alzheimer's

The link between Alzheimer's and Ashbery is sonic and metonymic, not actual. This week, Rebecca Mead has an essay in The New Yorker (May 20, 2013) about dementia care. Her article focuses on a retirement care facility in Arizona called Beatitudes, in particular on the director of education and research, Tena Alonzo, who practices compassion in her work with dementia patients. The article complements Norman Fischer's new book on Lojong, the practice of compassion, which he adapts from the Tibetan tradition into his own teaching of Zen. Alonzo's practice, as one might call it, is beautiful: she herself underwent a public bath in front of caregivers at Beatitudes. Another time she had staff members spoon food into each others' mouths to show them how discomfiting this is for residents. If compassion comes of discomfort, then Alonzo is its guru. But there, hanging in the midst of the page that begins with the comment of an Alzheimer's expert about Beatitudes is a new poem by John Ashbery, "Breezeway." "What was most impressive was not what was going on, but what wasn't going on--the absence of palpable distress," says the Alzheimer's expert. "Alas, it wasn't my call," responds Ashbery. "I didn't have a call or anything resembling one."

To the left of Ashbery's poem, a skinny column tells us about "a bird-like woman" who seems inconsolable. The staff tries everything, to no avail.  Perhaps chocolate will help, they say. Or lollipops. Demented patients often suck on their gums, like babies. "The days go by and I go with them," reads one of Ashbery's lines. "We have to live out our precise experimentation." The poem wanders, like an Alzheimer's patient still possessed of a cocktail of memory and imagination, and ends up with a divine Batman (he is a Him). 

We've been watching old sci fi episodes the past few evenings: The Outer Limits ("Paradise"), Eureka ("You Don't Know Jack"), and a Star Trek episode in which the crew succumbs to very quick aging, dementia. In each of these shows, the primary fear seems to be of sudden onset Alzheimer's. Characters in their 20 or 30s suddenly resemble 80 or 90 year olds. (Make-up workers had steady jobs for a time.) In the first two of these shows, the episodes end with the birth of a baby; in the third, Kirk is brought back from the certain death of the entire Enterprise (an incompetent captain takes over when Kirk loses his memory) through an adrenaline-based serum. It's part of a new hunch of mine that aliens and Alzheimer's are often yoked together, whether in science fiction (which I know precious little about) or in the way we talk about those among us who wander (the homeless, the "alien"). That last perception comes of Catherine Malabou's political and economic reading of what she terms "flexibility" and "plasticity" in conjunction with Alzheimer's. If the powers that be demand our flexibility (flex-time, the willingness to move, to change jobs, and so on), then our own plasticity (change that comes often of destruction) may point a way out of this late capitalist nightmare.

Sci fi television is hardly about compassion, but there are moments in these episodes where compassion seems almost to cure Alzheimer's.  This is especially true in the "Paradise" episode where only the old couple who really loved one another can create a baby (from an alien's egg); the other old women who appear as young vixens, instigate one night stands, return to old age and die rather suddenly. (Yes, there's also some old-fashionized moralizing under the surface here.) Mother hands her daughter (incapable of having children) a baby, then returns to her old age, now clear of the Alzheimer's. Of course this is compassion in the service of entertainment--having just read David Shield's Reality Hunger, I reminded of my own love of meaning over entertainment value--but it's an act of love that pulls us back from Alzheimer's.

That is a moment of fantasy.  Alzheimer's, through the machinations of science fiction, where imagined things happen in real life, is really cured. In our real life, that cannot happen. Ptolemy Grey cannot find his and his culture's past by way of a magic (and ultimately deadly) pill. The story, insofar as it remains story, becomes one-sided. Caregivers go along with stories, play with them, until even story fades. Then the narrative is that of the caregiver and someone for whom time has fled.  In the best case scenario, that narrative is one of compassion made of simple acts, like a kiss in the photograph at the top of the Meade article. The article shows us how we can care for people who can no longer care for themselves. Or, as Daniel Tiffany wrote on my facebook page, where I linked to the article, it shows us "how to care for anyone."

"Otherwise there's no dying for anybody,
no crisp rewards."  [JA]

NOTE:

A 2005 link informs me that Scotty, from Star Trek, was diagnosed with Alzheimer's. He died July 20th of that year.

Define "dignity"

I'm becoming obsessed with the word "dignity." Look up the terms "Alzheimer's and dignity" on amazon.com and you get three pages of publications on the subject, many with a more euphonious use of "dementia" with "dignity." Google the terms and you get more pages about dignity. Talk to a social worker about dementia and the word dignity is bound to appear. Talk in our new class (with me and Prof. Lori Yancura of Family Resources) at UHM about dementia and--lo and behold!--that word enters the room again. To have dementia with dignity is, of course, the state of being before you finally "die with dignity." That's probably another kettle of fish.

My earliest memories of the word come out of the 1960s, I suspect, when "dignity," like "articulate," was often used to praise African Americans who, if they carried themselves well (as it were) and spoke with ease, were both dignified and articulate. So my suspicion of the word "dignity" may come from the association I have been the word and a paternalistic (Joe Bidenesque) expression of approval. Dignity means you're "clean"--more on that soon.

As I tell my students to do, I go to the Oxford English Dictionary for assistance. There I find definition "1.a. The quality of being worthy or honourable; worthiness, worth, nobleness, excellence," and "1.b. the quality of being worthy of something; desert, merit. Obs. rare." I can see the corridor get longer: what then is "worth," is "excellence"? Does "being worthy" come from within, without, or is it a combination of the two? Must we earn our worth, or is it inherent, as Jefferson wrote? And why is it crucial to preserve it in the face of dementia and death?

When I click on an article entitled, "Preserving the Dignity of a Person with Alzheimer's Disease," by Kim Warchol, I find another version of this definition, this one from Merriam-Webster, followed by a neat section on "sense of self," used to explain the term further. The author posits that having a "strong sense of self" provides one with dignity, whereas losing that "sense of self" (as one inevitably does in dementia) leads to a loss of dignity; dignity based on one's own sense of self yields to dignity based on another's sense of oneself. "Therefore, if the quality of the interactions between this person and their family, care partners and community members are all negative, the person will not feel worthy of esteem or respect, thereby losing dignity." But whose dignity is lost? Is it the dignity of the person with dementia, or the dignity offered by the person without? And whose dignity might that be?

In the introduction to the special feature of EOAGH on dementia, I wrote (by way of Fred Wah) on the desire expressed by Alzheimer's patients to "go home." Home is the spatial equivalent of the time one felt at home, or one was young, or one still remembers. When she first entered the Alzheimer's home, my mother considered her home to be Wooster, Ohio, where her mother had lived out the end of her life, though I'd never heard her speak of Wooster as home before the onset of her dementia. Canton, maybe, or Meadville. This article on dignity in Alzheimer's joins the notion of "dignity" with that of "home" in an intriguing, if not exactly believable, way.  Under the subtitle, "Elopement," Warchol writes: "If the person with ADRD [dementia, in short] feels unimportant, lost and misplaced they may 'seek to go home'. Remember the person is often not seeking the bricks and mortar of home but the feeling of home. Home is a place of dignity and respect." Never once did my speak of her relationship with her mother as one of "dignity and respect," so already I'm wondering at this neat bringing together of notions. The writer also attributes swearing to this lack of dignity, though contact with dementia patients makes it seem more likely that loss of inhibition in language sometimes comes with the disease, rather than a perceived "lack of dignity."

I'm hardly opposed to the proposed solutions to the lack of dignity this author writers about. Showing respect, loving the person with Alzheimer's, positive feedback, learning the person's life story, all of these are "worthy" and serve to create better care-giving (a double positive, that word). But it seems to me that the emphasis on "dignity" belongs more to the family-member than to the person with the illness, more to the outside than to the inside. I think suddenly of Allen Ginsberg jumping up and down to the screams of The Clash, how it occurred to me that I was witnessing the act of a man who had completely forsaken "shame," how liberating that can seem. So, while the solutions are noble, nay dignified, they also strike me as based on a concept that becomes more dubious, or at least less necessary, the harder we look. Dignity covers a lot of ground, from a good carriage to a lack of poop in the pants, from strong self-regard to all those bodily functions we consider to be private. Dignity and privacy might well be put in contact with each other. Or dignity and secrecy. I will not show you how I feel and I will not show you how I poop, and that will lend me dignity.

Or will it?

 Cambodia, 12/12: this man, who works in computers, got his shirt from a member of an NGO.