The Return of _Dementia Blog_

 

FB posts:

1) I had a good lunch yesterday with the writer Mark Panek (look him up) at the Kurtistown Cafe. We talked about our mothers, about grieving for them before they died. Then today, Jordan Davis put this up on twitter (for which thanks). There's also a second volume, _"She's Welcome to Her Disease: DB, Vol. 2_, also from Singing Horse. I found the books necessary to write, more difficult in the end to read.

 

2) The cover, and the later cover, were by Gaye Chan.

 

3) Since this was posted, oh 15 minutes ago, I've received a poem by Aryanil Mukherjee in response to volume two and then a request for information by Katie Stewart about the symposium Losing It at the U of Chicago that we were in in 2011. It's coming up dementia this morning.

Dementia Blog

	Jan 14
to FairOaks

Dear Fair Oaks people--my mother Martha was at Arden Courts for several years before her death in 2011. Everyone there treated her well, and was kind to me during my infrequent, but intense, visits.

On behalf of my mother, who would agree with me if she could, I want to say how much I abhor Trump's words about "shithole countries." So many of you who work there are from Africa, the Philippines, and other places that he would so categorize. You are beautiful people. And he is not.

So again, thank you for your care for Martha.

aloha, Susan

Being Mortal: Atul Gawande, a moped death, and my mother's Alzheimer's

[Photo taken on 11/1/16]

When I embarked on teaching Atul Gawande's Being Mortal in my Honors Research class for freshmen, I thought perhaps it was a stretch. The thesis of the course is that we are often driven by our experiences to do particular kinds of research. So we're reading a series of memoirs by people who do research. Among them we've read Timothy Denevi's HYPER, the autobiography of his ADHD, along with a history of the condition; Ta-Nahisi Coates's Between the World and Me, which combines journalism about black men killed by the police with a memoir of his growing up in Baltimore; and Hope Jahren's Lab Girl, which is about everything, including being a woman scientist with bipolar disorder who studies the inner lives of trees. These are all beautifully written, accessible books, but they are also difficult. 

When I started lobbying my university's administration two years ago to communicate transparently about deaths of students, faculty and staff, I was told in several meetings that such information would prove "disturbing," "cause prurient interest," "would wear students out," and so forth. Report of a suicide, they claimed, would inevitably cause contagion. As I became an inadvertent expert in the ways that colleges and universities handle deaths, I realized how many universities have comprehensive death protocols (with places to report deaths on-line), and how many of them have adopted a "best practice" of Student Intervention Teams or even, as they do at the University of Arizona, a place for students to go who are worried about a friend: http://friend2friend.health.arizona.edu/  The University of Northern Iowa (I choose them because they come up first on google) launched their Intervention Team in 2006: https://www.uni.edu/deanofstudents/sit  The mission of this team, according to their website, is to "promote students' physical and mental wellness, a safer campus community, and the retention of students who can be successful when treatable issues and behaviors are addressed and managed."

My father died 24 years ago, almost to this day (November 4, 1992). He was a religious man who had kept his faith to himself, because my mother was an aggressive agnostic. As he was dying, he began to talk about God and his own practice of prayer again (if that is the word for what he seemed to do for the first time in my knowing him). He died in the hospital surrounded by neighbors, my mother and me. After he died, I suggested putting an obituary in the newspaper. My mother said no. I asked about a service. She refused. I screamed at her. My father’s sister came from Michigan with a first cousin of mine I hardly knew. My mother would not speak to them. I performed an awkward translation. The neighbors had a lunch for us. My mother did not attend. We went to Arlington National Cemetery to put his ashes in the columbarium (that had been another fight between her and me—I won that one). My mother did not come. She went only years later when my husband, who never met my dad, insisted that we all go. She started to break down and then turned and walked away. She was unable to grieve. I half believe her Alzheimer’s emerged out of this trauma at being unable to release my father or any other of her losses (there were many in her childhood). My fury was that she would not let me grieve either, or his friends, some of whom began calling the hospital when they heard he was dying. She controlled the information and, so long as no one else knew, she was somehow someway still holding things together.

I had no experience with death as a child or a young adult. I had no experience with old age, save what my parents provided me as they grew older. I lived in a world of the young or the less old and, until my father passed, I had never witnessed a death. What a luxury that might seem to reside exclusively with the living. But also what a handicap. My mother’s refusal to grieve came back to me as I talked to this or that administrator who said that reporting on deaths would only cause more trouble. So what a surprise to find, when I began to teach Gawande’s book about end of life issues, that my honors students (18 years olds, almost all of them) were prepared. This is Hawai’i, after all, where extended families retain coherence even in this fractured time. My students have grandparents, either alive or recently deceased. In addition, two of them took a course a Iolani School on hospice; one of them works at an assisted living facility; another volunteers at a hospice; yet another works in a nursing facility that treats the dying. Many of them had already filled out Advance Health Directives as exercises for classes in high school. They were more prepared—by far—for our discussions of death and dying than they were for those on ADHD or on being black in America or on being a woman scientist.

Yesterday, I asked my students to talk about differences between individualism and communitarianism. They are community-oriented, like most local students in Hawai’i. So is Gawande, who presents Josiah Royce’s 1908 argument against individualism in a positive light. Here’s Royce: “The selfish we had always with us. But the divine right to be selfish was never more ingeniously defended.” Here’s Gawande: “Consider the fact that we care deeply about what happens to the world after we die. If self-interest were the primary source of meaning in life, then it wouldn’t matter to people if an hour after their death everyone they know were to be wiped from the face of the earth.” (126-7). So Gawande argues that, “The only way death is not meaningless is to see yourself as part of something greater: a family, a community, a society” (127). He overstates his argument here, as his examples of community builders, namely Karen Wilson and Bill Thomas, are both individualists, capable of seeing past culture’s myriad inertias. “Culture strangles innovation in the crib,” Thomas tells Gawande (120). What is culture if not community? What is the breaking of that culture other than the act of an individualist? So Thomas, thought to have oppositional disorder as a child, is the one to figure out who to make life more meaningful for his nursing home charges. He fills the home with animals and plants.

My mother increasingly lost focus after my father died. She was certainly anxious—she had always been anxious—and depressed. And then, ten years on, she started to confuse herself with me, my husband with hers, and to refuse to tell the stories she had loved to tell. She was probably forgetting them, my husband suggested later. She began to wander. Once in the middle of the night she knocked on the neighbors’ door to inform them that the sun had not come up that day. The extent to which her wandering can be seen as an embodiment of grief is probably not great; after all, she was losing her brain, not simply her mind. But I wonder, as I look back, how much of her distress came out of her inability to deal with the suffering she’d experienced as the child of a broken, alcoholic family who had had to cut herself off from her past (she thought) in order to create a future worth living in. She created that, but then it fell away from her under the stresses of the past. Gawande uses Ronald Dworkin to argue that, even if we lack independence near the end, we can hold onto some measure of autonomy. That autonomy amounts to self-authorship, the authority we retain to write our own narratives: “All we ask,” writes Gawande, “is to be allowed to remain the writers of our own story. That story is ever changing. Over the course of our lives, we may encounter unimaginable difficulties. Our concerns and desires may shift. But whatever happens, we want to retain the freedom to shape our lives in ways consistent with our character and loyalties.” Obsessed with independence from age five until she descended into Alzheimer’s in her 80s, my mother lost her authority to that disease. The marvelous story-teller lost her sentences, then her words, then her voice. There’s something horrible about that, because it suggests that she lost meaning. But there’s also something better about it; she survived so long that she even survived herself.

One week ago, there was a fatal moped accident on Dole Street, which runs through the University’s campus, cutting between the Law and Engineering Schools. It’s the road on which students trudge back and forth to the dorms, if they live in dorms. The cross-walk is very close to the bus stop where I stand at least once a week to catch my first of two buses home. It’s a very public place. Two hours after the accident, members of the community received an email from the Department of Public Safety that Dole was closed due to an accident. Hours after that, we were informed that the road was again open. Never were we told by the administration that the accident had been fatal to the 22-year old moped driver (who turned out not to be a student, but who knew?), or that counseling was available to anyone who witnessed the event. A student newspaper reporter I know told a colleague of mine that he had come upon the accident while the young man still lay on the road. The students in my Honors class are writing in their blog posts about the young man who died. I wrote to the President of UH, who is also currently the interim Chancellor of Manoa, to ask that he communicate with us; I was not the only one to do so. I wrote to two members of the Board of Regents, and then submitted a version of that email to the local newspaper. Here is what they printed:

UH should speak out about campus deaths

If you drive down Dole Street, you will see a memorial to the young man who died on a moped on Tuesday (“1 dead after mopeds crash near UH Manoa,” Star-Advertiser, Oct. 26).

That memorial was made by the young man’s friends.

While the story has been covered by the media, the University of Hawaii at Manoa has not uttered a syllable, except to say that Dole was closed and later re-opened.

Nothing about how students may have witnessed a fatal accident, nothing to express condolences over the loss of life on our campus.

This is not unusual. UH-Manoa never says anything about deaths on campus; it leaves that to the rumor mill. Students should know they can find counseling if they were traumatized by events like this one. They should know someone in administration cares enough to send an email.

The morning after the accident, we got an email telling us that a moped had been stolen at one of the dorms.

Susan M. Schultz

Professor of English

University of Hawai’i-Manoa

Silences. I wrote a book of literary criticism about them. It began as a book about poets who got writer’s block, and ended as a book about poets who wrote through the cultural constraints that threatened to silence them. It also led me into considerations of silence as a spiritual state, one healthier than the silences that squash. These silences are those that we experience when we grieve. A friend says her mother termed the year after her second husband’s death to be the most exciting of her life. Grief is like that; it’s difficult, but it’s also an invitation to think about what we find meaningful in this life. If we can’t grieve, or are not permitted to grieve, we cannot find meaning. A colleague in another department told me that she’d been unable to grieve over someone she knew (not well, but she knew her) who had died on campus because the death was kept quiet. What protects some people cuts others to shreds. The silences I experience while meditating can sometimes be difficult, but they are never meaningless. Perhaps I hold too closely to meaning to be a “good Buddhist,” whatever that means, but that is my soul’s nutrition. As Gawande makes clear, death is the not the real problem; it’s our unwillingness to acknowledge it. In his Epilogue he writes: “We [in medicine] think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being. And well-being is about the reasons one wishes to be alive” (259). Yesterday on NPR’s Fresh Air, Kerry Egan, who has just written a memoir of her life as a hospice chaplain, spoke to the happiness she feels among the dying. Paradoxical, perhaps, but as she said, death is part of life, and life can be joyful, as well as difficult.

My mother, before she got Alzheimer’s, was a big talker. She told stories, and she waxed philosophical about life issues. She also brought sometimes savage silences along with her; when angry, she wouldn’t speak to me, sometimes for days. Clearly, there were things she couldn’t say to herself, either. She couldn’t say that she hurt, or that she grieved, or that others could do what she could not, if she could help it. It’s the talking quietly that matters more to me now. To listen while speaking one’s grief, and to send information that is tethered to compassion, can be (write it!) the work of institutions. We need to hear others' words, and we need to speak our own.

NOTES:

Thank you to Ian Lind for writing this blog post about the latest death on the UHM campus: http://www.ilind.net/2016/10/31/uh-silent-on-dole-st-fatality-condolences-seem-to-be-in-order/comment-page-1/#comment-216382

Books referred to, however obliquely, in the text:

Kerry Egan, On Living, New York: Riverhead Books, 2016.

Atul Gawande, Being Mortal: Medicine and What Matters at the End, New York: Metropolitan Books, 2014.

Susan M. Schultz, A Poetics of Impasse in Modern and Contemporary American Poetry, Tuscaloosa: U of Alabama P, 2005.

---.  Dementia Blog, San Diego: Singing Horse Press, 2008.

---. "She's Welcome to Her Disease": Dementia Blog, Vol. 2, Singing Horse Press, 2013.

Against Revision

"What is the longest it's taken you to write a poem?" (Tom Gammarino)

"17 years." (Tim Dyke)

--Hawai'i Book and Music Festival Q&A

 a. To look or read carefully over (written or printed matter), with a view to improvement or correction; to improve or alter (text) as a result of examination or re-examination. Also intr.with object implied.

 b. To examine or re-examine (something, esp. a law, code, plan, or the like) for the purpose of improvement or amendment; to alter so as to make more efficient, apposite, or effective.

--Oxford English Dictionary

This exchange between Tom and Tim was the second such that I heard during the Book & Music Festival this Spring. The first, at a Bamboo Ridge panel, featured writers praising revision as the most important part of the writing process. I had begun to get ornery, so I spoke up during the Tinfish event, defending (my own) lack of revision. Tim's remark is truer, perhaps, insofar as it takes a lifetime to write any of our lines of poetry and prose.

Now, this isn't to say I never revise; when I write an essay I approach, avoid, return, and rewrite often. When I write a poem, I intervene, adjust, erase, and then await the ending. If revision is a kind of thought, then it's not to be dismissed utterly. But when I write a poem, I want to inhabit the moment of writing the poem as the poem. To revise is to alter, and what I want is the unalterable moment, insofar as such a thing exists. This is the fruit of my meditation practice, but also of my years of observing my mother in her Alzheimer's. Alzheimer's is a disease that cannot be revised, let alone cured. It is the nearly pure de-construction of a life. To revise one's record of that process of losing--memory, speech, the ability to walk and take care of oneself--is to suggest it can be altered. The person with Alzheimer's is being altered, but not revised. The writer, if anything, is being revised, but her words remain faithful to the process (or unraveling of), however horrible it seems.

And so I wrote what I saw into my blog. When I prepared the blog posts for publication as books, I did a lot of editing. Editing is certainly a part of revision, but less complete. As I noted when I was editing my manuscripts, grieving seems to be a form of editing, and vice versa. I took out what I thought was not of interest to potential readers. I fixed sentences so that they scanned better (yes, prose needs to scan, too). I tried for an absolute economy of thought and feeling. But I did not ever add anything to the blog posts. Nor did I re-arrange their elements. To add or re-arrange would have been to suggest that alteration was possible, that the moment was not complete in and of itself. To add would have been to create a narrative (probably), one that works toward making sense. What I wanted to do was to record non-sense, not to make a false front.

In the memory cards that have preceded and followed the two books on Alzheimer's I've tried to be true to the process of making sense of the world, without fixing it in place. Hence, each day I write an entry is a day in which I arrive at--or stumble onto--meaning. Meaning is not edifice but mandala, or sand castle. To revise is to hold onto meaning, try to make it permanent, accessible to others as container not as hourglass.

John Ashbery says that he learned to revise as he wrote. Write long enough and you know what moves to make (which is why I still encourage my young poets to revise), which will work and which not. You know which serves to spin and which to hit flat. Which balls to hit to right and which to left field. When to dunk and when to lay-up. How to change key at the right moment to keep the improvisation conversational, rather than petroglyphic (though the unreadability of the petroglyph re-introduces interpretation as a kind of improv into the equation).

So yes, on the level of the sentence, you revise, even if the computer allows you to erase the memory of those shifts and tacks across the page. The ability to move back and forth in a document on the computer means a constant forgetting exists at the center of the memory cards I write. That's part of it, perhaps what joins my obsession with memory with my obsession about forgetting. To revise inside the poem/meditation/memory card, however, is not to alter the moment, but usually to replace it with another one, more apt for the occasion (and its quick flickering away). It is not to create a "good poem," though one hopes they're good enough, like many mothers. It is to make sure that the record of the moment works. Not a question of efficiency, but of haphazard stumbling into a meaning that will cohere, even as it's let go. The shifting ground of questions and answers, of difficulties and temporary solutions. Burke's situation strategy without a clear situation or strategy.

But more important to me is the sentence I wrote just up the page from here: "The writer . . . is being revised." That old visionary company of love might have tanked in the 19th century, along with the sublime ambitions of poetry. But a re-visionary company comes after Objectivism (in a poetic sense) and after disappointment, brutality, and age in the "real life" sense. When I write, I do not re-shape the world under the tremendous power of my pixellated thoughts; rather, I am re-shaped by it. As my experiences wear away at my expectations and ambitions and desire to alter the text that is my life, my writing records the process. And this may be why I find myself writing more and more lately. As my ambition to write poems wears down, my delight in recording the process of being lived (if I can put it that way) increases. Robert Frost's adage about form, that without it you're playing tennis without a net, transposes for me into a sense that without writing my life would have no form. No net to catch me. I can mend a net, but I cannot re-vise it. It alters me. Where alteration finds.

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.

On returning from a trip to Seattle where I talked about documentary poetry

Sent via Certified Mail by the County of Fairfax, Office of the County Attorney, notice that I am delinquent in sending my annual report of my mother's condition. I remember ignoring one of these last year. So I will send in news that she died in June of 2011, and ask them to please stop sending me these notices.

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.

Meditation: On My Mother's Ashes

Life is a pure flame, and we live by an invisible Sun within us.

--Sir Thomas Browne, "Urne-Burial"



I picked up my mother's ashes from the post office the other day; they came in a priority mail box, certified (not registered, as the post office employee told me was mandatory). "It's because they need to be under lock and key at all times," my own mail carrier told me later. The man at Georgetown University's Anatomical Donor section told me on the phone that UPS and FedEx do not deliver cremains. He was checking my address, which he (like everyone who calls with from another time zone) could not pronounce. According to a certificate, which came in a plain envelope, my mother's body--she died on June 14, 2011--was cremated on September 2, 2012. Her remains arrived, then, a full year later to the Kāne`ohe Post Office.

The lead story in the Star-Advertiser on September 16 was "Rights clash amid dispute over mural." The mural, "Forgotten Inheritance," by Hans Ladislaus, was installed at the Convention Center 16 years ago. Since the 4th of September of this year, it's been covered over by a black cloth. Native Hawaiians, including those who protect bones against construction, asserted that "they were offended by the depiction of bones in the sand [left exposed to the elements] at the edge of the mural." According to Native American Legal Corporation lawyer, Moses Haia, "iwi [bones] of our ancestors provide us with our foundation. It's what makes us who we are."

A few weeks ago, an artist at Na Mea Hawai`i told me about a group of native Hawaiians who very secretly bury the iwi in isolated locations on the Islands. In the old days, the person who hid the bones was killed, so that his secret could never be revealed. Many of these iwi are repatriated from museums, others from sites where rampant development is taking place--hotels, highrises, highways. In his law review essay on the iwi, Matthew Kekoa Keiley describes the burial of a young man's bones, and explains that "Nā iwi kūpuna represent the immortality of our ancestors. After the flesh decays, the bones remain. The bones of our Native Hawaiian ancestors symbolize an important link between our past, present, and future." From the sublime to the ridiculous, my google search also locates an episode of the new Hawaii 5-0 called "Ka Iwi Kapu (The Sacred Bones).

When my friend Charmaine Crockett, who has a beautiful new website on issues of death and dying, saw the date on my mother's ashes (I sent her the photos that were posted to this blog yesterday), she said that the delay is grounds to sue, that there has been disrespect paid to my mother's remains. When I tell a non-native colleague that my mother's ashes arrived, he says most people apparently never pick them up. Never could there be a starker difference between cultural notions of human remains and the way they represent (or fail to) our connections to the past, and to each other. She notes that I do not sound upset by this, but reminds me that remains are sacred to native Hawaiians. I respond that I'm not upset by the delay, that what is sacred in these remains is my memory of my mother. My sense of ancestry resonates not as belonging to a larger community, but of the small unit of daughter and mother.

My mother was never one to hold anything sacred; she would not have had much interest in her own remains, or anyone else's for that matter. A vicious combination of cynicism and fear, along with a healthier dose of realism, governed her notion of death, though occasionally she'd let on that she believed in reincarnation. That belief, such as it might have been, came divorced from any spiritual tradition and seemed to be the least of what she could take from traditions she otherwise admired not. "Can Martha go to heaven?" her Catholic school friends had asked of their one proto-Protestant class-mate. I gather the answer had been no, and that no had decided her against that spiritual path.

__________

My mother's ashes. There's pathos in the apostrophe. She's no longer in possession of them. She never was in possession of them. "How the bulk of a man should sink into so few pounds of bones and ashes, may seem strange unto any who considers not its constitution, and how slender a masse will remain upon an open and urging fire of the carnall composition": Sir Thomas Browne. Their weight is literal; there appears to be no spiritual heft to these ashes as they sit on the floor beside my computer desk. Proust describes the world of Celtic belief as one where material objects hide spirits that escape when someone walks by later. He shifts that magic to memory in his study of how the past emerges (like new life) from odd encounters with the material world (a tea cup, a madeleine). So I might say that these ashes, sitting as quietly as my mother did in the years before she died, contain memories yet to be dislodged.

Her ashes sit beside me, not in the suburban chair she sat in at Arden Courts Alzheimer's home, her elbow slipping off the arm rest, right shoulder slumped lower than her left, but in a black box inside which a plastic bag holds visible gray ash. The box's label tells me where the remains were cremated (Beltsville, MD), when (9/2/12), her name (Martha J. Schultz) and includes a "cremation ID": 026518. The last line reads "Georgetown University School of Medicine." This is her epitaph.

My husband wonders why I did not have the ashes sent to Arlington National Cemetery, where my father's ashes are interred (after quite a fight between my mother and me). That would have been more practical, I admit. But to have them here, not quite knowing how to feel about them; not yet summoning involuntary memories; unsure of what to do with the undifferentiated material that was my mother's body; this means something. Meaning must await its unfolding. Perhaps it will be stored in a warehouse with other boxes of latent memory, or maybe it will never unfold. But these ashes, if not quite sacred to me, if not quite the Christian "dust to dust," sit still as possibility, containing a future not of their own making, but of ours.



"If we begin to die when we live, and long life be but a prolongation of death, our life is a sad composition; We live with death, and die not in a moment."

--Sir Thomas Browne

"Firewood becomes ash. Ash cannot turn back into firewood again. However, we should not view ash as after and firewood as before. We should know that firewood dwells in the dharma position of firewood and it has its own before and after. Although there is before and after, past and future are cut off. Ash stays at the position of ash and it has its own before and after. As firewood never becomes firewood again after it is burned and becomes ash, after person dies, there is no return to living. However, in buddha dharma, it is a never-changing tradition not to say that life becomes death. Therefore we call it no-arising. It is the laid-down way of buddha's turning the dharma wheel not to say that death becomes life. Therefore, we call it no-perishing. Life is a position at one time; death is also a position at one time. For instance, this is like winter and spring. We don't think that winter becomes spring, and we don't say that spring becomes summer."

--Dogen


With thanks to Jeneva Burroughs Stone for introducing me to Sir Thomas Browne's essay (after hearing John Ashbery recite part of it) and to Charmaine Crockett, for offering another perspective on human remains, and for her beautiful virtual talking circle on death and dying.

Later in the day, I received this "breaking news" from the newspaper: "The mural, 'Forgotten Inheritance,' by Hans Ladislaus will be unveiled again for public viewing at the Hawai'i Convention Center after having been shrouded in black cloth since Sept. 4."

My mother arrives in Hawai`i

Pam Brown's review of _"She's Welcome to Her Disease": Dementia Blog, Vol. 2_

Australian poet Pam Brown wrote a lovely review of my new book on her blog.  You can find it here.

If you search the Tinfish Editor's Blog site, you'll find that I've written about her work, too. Most recently, I wrote about her and Maged Zaher's new books.

From "weird reading" to "demented reading"; or, finding the appropriate in appropriation

          [photograph by Maggie Steber of her mother's hand]

I haven't read the essay, mind you, but my eyes strayed to this long sentence of Eileen Joy's this morning: "Whereas traditional literary criticism often seeks to reveal the psychic-cultural-historical orders in which texts play an important part (and thereby, for all of contemporary critique's disdain for what is 'universal,' texts are often subsumed, whether as willing or more subversive actors, into larger and supposedly totalizing orders of meaning, referred to, with some suppleness, as 'context'), a speculative reading practice might pay more attention to the ways in which any given unit of a text has its own propensities and relations that might pull against the system and open it to productive errancy (literay, 'rambling,' 'wandering'--moments of becoming-stray)" (29).

Or: “An Alzheimer's patient,” writes Catherine Malabou, “is the nemesis of connectionist society, the counter-model of flexibility. He is presented as a disaffiliated person: errant, without memory, asocial, without recourse.”

I've thought a long time about writing Alzheimer's, the most effective ways in which to honor the person who carries the illness (I'm avoiding "who is the illness") rather than scribbling about being the person who has to live with the person who carries the illness.  But I've not thought about what it might mean to read Alzheimer's, to do as Joy suggests, namely "wander" through texts, as I strayed through hers. Wandering is one of the major symptoms of middle-Alzheimer's. We found my mother several houses down from her own one day, seated on someone else's porch, staring at the empty street. Another day she wandered and fell.  One morning, according to a neighbor, she arrived at their door at 3 or 4 a.m. and announced that the sun had not come up that day. While this last presents an instance of inaccurate reading (she thought it was 10 a.m., when it was 3), in the hands of a reader it could have been an imaginative one. In fairy tales or science fiction, such things do happen.

Which gets me, in a round about way, to the question that sometimes comes up, and comes up today because I'm about to go a-reading on the continent (Denver, Philly, DC) from my latest Alzheimer's book, "She's Welcome to Her Disease." The title of the book comes from one of many monologues I wrote down in my mother's Alzheimer's home. My friend Vera loves the section called "NO CHEESE," which is likewise a "found poem." Reduced to the dimension of paper (or screen), that section records events in the Alzheimer's home around lunch time, when one of the residents always yelled out "NO CHEESE," lest someone might serve her some. While this section, like others, reads like avant-garde writing, it is utter realism, the recorded speech of several residents and of voices from the television, which always played counterpoint (or fugue) with the living voices. (Here's a version of that episode on the blog.)

After I read this section in Honolulu months ago, one of my graduate students came to ask me about it. She wanted to know about the ethics involved in using peoples' voices without their permission--permission that could not be had, in any case, because the residents are beyond permission. At a university where "human subject" forms are required for many projects, including those in oral history and the humanities, this is a live question. And it's a border crossing, this move from writing as oneself to writing as someone else (who is not the someone else they once were). At one point in my blogging life, someone from Manorcare wrote to ask me not to use names (I only used first ones) when I wrote about my mother's home, owned by that corporation. She, the writer, understood that I had done no harm, but she, the employee of "Corporate," simply had to do her duty. If she still has that job, she may read this entry, too.

I was, as Malabou would say, "flexible."  I reduced names to first letters, at least for a time. I kept going, but I stayed out of trouble, whatever trouble could have come of that. The question of medical privacy is real, but so is the problem of bad secrecy. How many Alzheimer's sufferers does an ordinary person see during the course of a day? Probably none, as they are hidden away, especially if they tend to wander. They are at home, or they are behind locked doors that require codes to enter. We do not see them, as if they are not there. We cannot read them. Names unlock some of these doors. There's an ethics of uncovering, as well as an ethics of retaining borders. But I get ahead of myself. 

These are conversations about borders. When is a walk actually a wander? When is wandering meditative and when does it amount to straying? (When is a dog a pet, and when a stray?) When is the record of a voice appropriate, and when is it appropriation? I talked to Hank Lazer about these issues when he was last in Honolulu. He said when he used to write about his grandparents, he considered what he was doing an act of honoring them, not one of doing them harm. That the conversation has moved in another direction from there, away from honor and into hurt, as if writing down the words of one's family or friends could (only?) wound them. In a place like Hawai`i, which is so small and where so many people know one another, the question is even more loaded. Consider, however, that borders can be crossed in the way that languages are translated. Something is always lost, but there is contact. Only in contact zones can we find each other, if our languages and cultures are not the same. Alzheimer's is that: another culture, with another lexicon.

Here is Maggie Steber, from the Leica camera blog (see direct links below):

--MS: That’s a great question. Of course in some ways I was desperate to make images for myself of moments and things that would remind me of my mother and the experiences we were sharing. But I also tried to distance myself when I could, in both caring for her and photographing her, to make images that showed in a more clinical documentary way what this process of forgetting looks like. It’s important to understand what someone with dementia goes through. I wanted others to have a better understanding of the process, to dissect the process so it doesn’t seem so scary, and that it passes. I want to encourage people to be the warriors for their loved ones and participate in their end of life experience because it is such a gift.

"What this process of forgetting looks like" requires a person to look at, to be with. We cannot do that in the abstract, it requires documentation. I can hear the question to Steber about whether or not her mother would want to be seen in this way or whether or not she is invading her mother's privacy or what right she has to "take" these photos (the verb does have an edge, does it not?). The intimacy of this looking requires distance, as Steber points out, and it's perhaps that distance that most disturbs the listener or the reader. To be confronted with utterly intimate detail, but to know that it requires distancing, is a vertiginous feeling. A disturbance. We're used to the gesture toward intimate detail, if not the detail itself. We assume that to move toward the detail is a form of pornography. Wandering covers surfaces, as does pornography. Alzheimer's porn to go with photographs of Detroit. Steber has heard this question, it becomes clear, when she points out her mother's own (former) habit of mind:


--MS: I also thought it was important, because my mother was a scientist, to take this more scientific, clinical approach so the images might have value beyond the emotional ones. Sometimes I made images because it was the only way I could be close to my mother when she didn’t know me and could no longer speak. Some days I would just photograph her face over and over. That was for me, to help me get through it, to imprint her face on my mind. In that way photography was therapy for me.  Instead of being heartbroken, I would photograph and it gave me comfort. The experience made photography something very visceral for me — it held my hand through this long process.

The photograph at the top, of Maggie Steber's mother's hand, is beautiful. The hands of the very old are topographical maps of histories we cannot know, especially if they no longer have the words to say them to us. They are ridged, purplish, dry, sometimes cracked, artifacts. They often do not work well, either because bones are arthritic or because the mind that made them move is no longer up to that task. Our hands alone are not up to the task of witnessing our parents' declines. So we reach out for the hand that Steber describes as photography, or as writing, or as any form of art. Holding hands with art is a lovely, weird, image. But when we read from our books, we hold those books in our hands; we hold them.

To write "art form" once one has lived with Alzheimer's is to know how fluid form can be, how boundaries shift, and how wandering assumes the form we might have assigned to the word "walking" before. This is why we write others' voices, take others' photographs, to offer them and us form within the wandering. This is how it gets easier, not more difficult, to find intimacy. As Steber says in words I almost thought were my own: "An even more important reason, as I expressed earlier, was that for the first time in my life, a rather contentious relationship as often occurs between strong-willed mothers and daughters, could be set aside or even forgotten. I became liberated from the memory of that." This is why the Ashbery poem hanging in the midst of the New Yorker article on dementia care was so significant, in part. It provided a counter-wandering for the content of the article. A context of wandering. As Joy writes: "This [her notion of 'weird reading'] will entail being open to incoherence as well" (30). She's writing about academic writing and reading practices, but why not explode them (with the plastique of demented reading) into a larger, floating, framework of Alzheimer's?  She advocates putting two unlike texts next to one another, then wandering over them. That is what the New Yorker (alas there's a pay wall part-way through) asked us to do when they (for whatever non-reason to do with layout) placed those pieces on the same page. That is what we do when we spend time with Alzheimer's, running the constant border between sense and non-.

Here is a photograph of my mother, who died two Junes ago (on the 14th). It's her hand that I see, even more than her eyes, which in this photograph seem more playful than they usually were in those last years.

NOTES:

The interview with Maggie Steber is in two parts.  Part one.  Part two. Thank you to Jonathan Morse for sending the link my way.

Synchronicity: Meadville, Pennsylvania is everywhere

[Bridge on the Allegheny College campus]

The second volume of my Dementia Blog, "She's Welcome to Her Disease," (Singing Horse Press) is off to the printer today, after several computer pratfalls.  First, this book about Alzheimer's disappeared from the publisher's computer and had to be re-designed.  Then, the version that I proofed seemed not to be corrected, although there was a corrected version on his computer. The book itself seemed to have acquired the disease.

My mother was born in Meadville, Pennsylvania; she lived in Canton, Ohio as a child, but returned to Meadville to attend and then graduate from Allegheny College (class of '39). When I google the town, I find that there are just over 13,500 residents. I hardly ever thought about Meadville until recently, even though my mother gave faithfully to her college every year during my childhood and received their alumni magazine.  I have early childhood memories of visiting Meadville and seeing the bridge on the college campus (above). The father of a college friend of mine, it turned out, had gone to Allegheny with my mother.  But still, not much about Meadville, even if I did drive through the town in graduate school with a boyfriend on the way to visiting Garrettsville, Ohio, where Hart Crane grew up, and was promptly forgotten. That changed shortly after my mother died. The lawyer who helped me with Tinfish's non-profit status, which dragged on for a while in the mid-2000s, introduced me to a new friend of hers, someone who had moved to Honolulu recently, someone whose daughter knew her son. We met at Starbucks. Vera Lee, as she turned out to be, is a poet and novelist. After our mutual friend, Melissa, left the cafe, I asked Vera where she grew up.  She told me I wouldn't have heard of the small town in Pennsylvania, that there was a small college there.  Meadville!  (Vera's first book of poems is just out this week from Tinfish, by the way.)

Since then, Vera and I have found out that one of my colleagues, also someone she knows by way of her son's basketball league, had a mentor in Meadville.  Then Vera met someone from Meadville who is renting a house in Mānoa Valley. And today, when a former colleague of mine wrote to ask if J. Vera Lee might be a former student of his, by name of Julia, I responded that no, she was not, but there was a story in there about how I met Vera.

His response? To my "further astonishment," he wrote, he had lived for four years in Meadville, and attended Meadville High School in the early 1950s.

My mother's brother and mother lived in Wooster, Ohio until they died many decades ago.  In my mother's dementia, she once called to say she was in Afghanistan and needed a ride to Wooster to see "Joe and Mother." On another occasion, perhaps, I'll write about the ways in which Wooster has been entering my life lately . . .