Dementia & Avant-Garde Empathies

In his memoir, Losing My Mind, Thomas DeBaggio writes about losing his ability to write: "The disease produces a literary trash pile of butchered words, once recognizable but now arranged in combinations neither I nor the spell-checker has ever seen," he writes (125).  My edition begins with a typo, "Many friends have helped with ths project," and the editions of my students and co-instructor begin with flurries of missing letters. (I'm trying to find out to what extent these omissions are "accidents," or intentions by the editors, and why different printings have different errors.) The passage that sent me back to poetry, however, is this one by DaBaggio:

As I type, my fingers hit unexpected keys and make words with similar sounds or rearrange letters. It began with small words. Recently I discovered the word "will" when I thought I had written "still." Another time the word "ride turned into "rice. . . Sometimes this "dyslectic" alphabet goes unnotced by me for several readings. Eye, hand, mind, the connections are weakening. Typos tell the story of the march of Alzheimer's. (134)

I was reminded of a passage in John Shoptaw's essay on John Ashbery and Charles Bernstein in The Tribe of John: Ashbery and Contemporary Poetry. In that essay, he quotes Ashbery on the deliberate cultivation of "typos": "I just wrote ap oem this morning in which I used the word 'borders' but changed it to 'boarders.' The original word literally had a marginal existence and isn't spoken, is perhaps what you might call a crypt word" (214). Like Garrett Stewart, Ashbery finds meanings between words, though not between material words, as Stewart does, but between homonyms. Shoptaw catalogues many of these crypt words and phrases, which include the shift from "screwed into place" to "screwed onto palace" and "Time stepped," rather than "stopped," both from The Tennis Court Oath. Charles Bernstein takes cliches and transmogrifies them by sonic shift, too:

half a loaf
would be not
so good as

no loaf (half
a boast not
so good as

no boast). (Tribe, 215)

My co-teacher, Lori Yancura, had just found an article by Aagje Swinnen on "Dementia in Documentary Film: Mum by Adelheid Roosen." At the end of this article, Swinnen uses Riffaterre (ah, blast from the critical past!) to read words written by the woman with dementia chronicled in the film, Mum. Mum was not yet mum, still had words and wrote them on a clear plastic "window." Taking what appears to be evidence of illness, confusion, and reading it through the lens of poetry, Swinnen finds important words, and parts of idioms.  She takes the following phrase: "No I don't have to be on the leg, on the dove . . . or on the breaking, but I do want to be free..." reads "breaking" as part of "breaking free" and then speculates that the word "leg" might also be related to "breaking," as in "break a leg."

I created a writing exercise out of these links, connections, breakings of words into other words. The resulting chaotic proliferation of meaning does not net communication or information, but fields of suggestive sounds.  We did a 10-minute automatic writing bout during which any word that could be flipped into another word would be flipped/flopped. My co-instructor, Lori, started writing and laughing.  When she finished and read her piece, which was suitably chaotic, she said she realized that every word she'd written, while it did not "make sense to anyone else," was important to her. Her words, like those of others in the class, came to her out of her recent experiences with cars, with her dog, and so forth.  Some of the material came out of the conversation we'd been having before class began, about Kapena's car, which was lost on the Honda lot, after he took it in for repair. My free write took the word "Cambodia" apart as "come boding in an rise paddy," where Cambodia came to mind based on a verbal/visual memory of the teeshirt I'd seen there that read "iPood," which came from earlier in-class conversation about measuring your health according to the color of your poo (our class is inspiring us to eat healthier food . . . ).

We had written "demented texts," but we were not dementia-sufferers.  We had laughed at our writing, whereas DeBaggio suffered deeply trying to write his. For him, the typo was horrible symptom of his disease; for us, the typo was mental liberation into zaniness.  So what was the point of the exercise?  We had not come to understand the anguish of trying to communicate, but instead writing word salad. When I asked if the exercise helped us to better understand dementia, Lori noted that she wants to use the exercise with caregivers, because this exercise made her more understanding (if not better able to understand exactly what dementia-sufferers say). Knowing that her own words meant so much to her, but couldn't be tracked by us without explanation, meant that efforts at communication by Alzheimer's sufferers likely include words that likely mean a lot to them.  I remember Florence, in my mother's Alzheimer's home, who talked so much about church.  Or Sylvia about her store. A woman who kept saying "baby" over and over again. Their sentences didn't make sense, but their words were meaningful.

The avant-garde poet is not usually looked to as a model of empathy. She's more a Brechtian alienist, setting herself apart from audience rather than creating a moving field of compassion. But this exercise reminded me that those poems that drive their audiences crazy are (linguistically) very like persons with Alzheimer's, and that those persons with the illness can perhaps be better cared for if we recognize in their words the feelings that individual and broken words carry.  Not words as sentences or words as stories, but words themselves, in their own frailty, losing letters here and there, shifting into other words, then wandering into other fields of meaning, getting lost, and only sometimes found.  I read a book called The Alphabet Keeper to my kids; I think I found it in a London bookshop. The alphabet keeper has a big net and keeps trying to capture words, set them down to be still, but they keep shifting into other words. It's a lovely book, and now I see how apt an analogy it is for the language of dementia and for our attempts to capture meaning in it.  The in-class exercise was at once a literary one (make an avant-garde poem) and also an empathetic one (make the poem and hear it as transcript of a possible dementia). Or, as the Riffaterre drenched Dr. Swinnen writes: "The semiotics of poetry is to be understood as the transformation of the signs from the mimetic level to the second, higher level of significance by the reader."

Notes:

Thomas DaBaggio, Losing My Mind: An Intimate Look at Life with Alzheimer's. NY: The Free Press, 2002.

John Shoptaw, "The Music of Construction: Measure and Polyphony in Ashbery and Bernstein," in Susan M. Schultz, Ed. The Tribe of John: Ashbery and Contemporary Poetry (Tuscaloosa: The University of Alabama Press, 1995: 211-257.

Aagje Swinnen, "Dementia in Documentary Film: Mum by Adelheid Roosen," The Gerontologist (53:1): 113-122, 2012.

Mourning is Work, but Grieving is a Business

Dated 6/27/2011, a letter from Heartland Hospice's Bereavement Coordinator begins: "Dear Susan, whenever a loss is experienced, grieving will occur."


But who experiences loss and where will grieving occur? Where in the body do you begin to chart grief? And where does it end? (Or does it have boundary issues)?


The letter continues: "At Heartland Home Health Care & Hospice ®, we understand that grief is a normal experience and takes time."


Grief takes time. "Takes" is the active form of the verb, rather than "is taken," though the person we have lost "is taken" from us, offers us to grief, which then takes time through us. Grief is a commuter, we its H1 or its country road.



With the letter, I received a CareNote called "Grieving the Loss of Your Parent." "Take One--and take heart," it reads. "Give One--and give hope." Shaped like a Jehovah's Witness pamphlet, it comes from One Caring Place, Abbey Press, St. Meinrad, IN 47577. Over 400 "helpful topics" are covered by CareNotes™


This time we don't take time to grieve, we take a pamphlet, and we "take heart," good less tangible than paper folded and bound by two staples. Somehow time seems more tangible than heart, if less so than paper, but I don't know why that's the case. My son is taller than before. Is that not tangible fact? That he has a good heart means something else, something I cannot touch. I see it when he strokes the cat, but it's not the same as the cat stroke itself. Interpretation is what happens when public kindness becomes idea, is rendered private, if not privatized.


This CareNote comes dressed as a story. To the right of a color photograph of the sun setting over mountains beside a lake, I read about a daughter who is bidding her mother farewell. Her mother asks her if it's raining. She says, no, it's beautiful outside--"and it's even more beautiful where you are going."


Does that mean there is no rain in the afterlife? Is rain not consonant with beauty? And where is the where in "where you are going"? I got another letter a few weeks back, offering me condolences and thanks from the Georgetown Medical School, which is where my mother's body went after she died. She was not transported in a carriage, but in an SUV. As ever, my mother's version of the afterlife was literal, rather than figurative. Her body given to science. What comes before the after-life? The during-life. Enduring, in its twin senses of lasting and surviving, where the latter is not easy, is when it rains.


I am advised to do three things. "Find ways to cry and talk." "Forgive yourself for being human." "Grow from your experience with this tragedy."


I am told that my deceased parent understands and forgives me, that my tears, when they form, need to be shed, that I am preparing for my own aging. I am told to turn my losses into gains, to use them as tools to help me grow in my understanding. I am told to take heart. I am told that I am moving to "center stage to leave [my] mark on the world." I am told that I bring who I am which is because of them. I am told my life has new meaning. I am told there will be a heavenly reunion. I am told--by way of the author of the pamphlet--that my mother is my partner now. I am told these things with exclamation marks. I am given a website to find the complete catalogue.


I want to laugh at all this. I want to go all English 101-y on the author. I want to give her a low grade and tell her to rewrite this. But what's the point? They're not going to send me Marcus Aurelius, are they? I find, among his on-line quotations: "Death is a release from the impressions of the senses, and from desires that make us their puppets, and from the vagaries of the mind, and from the hard service of the flesh." That hardly seems consolation--not like "If you have buried one or both parents, use the experience as a lesson in life." Or: "Learn . . . how to express your love for the special people in your life."


At a poetry reading yesterday, Janine Oshiro read a poem against analogy. It posed the simile, "you are like a giraffe," but added (subtracted!), "except you don't have a long neck." Even so, her poems were full of analogies, good ones.


Hence, mourning is work. Freud says so. If you don't do the work, you end up melancholy, and that's Sisyphus's job description. The work analogy is folded into a metaphorical field. If the gravedigger digs the grave, the bereaved digs into emotional earth. The pamphlets Heartland Hospice (subset of ManorCare, subset of Carlyle Group) sends me is what happens when grief is not so much work as business. No longer a mystery (spiritual or otherwise), it involves a process. The uninitiated can be directed through the process, in the way that a driver can be told how to get somewhere on the road. (The journey toward healing is like the road to Honolulu.) Go to the light and take a left. Feel guilt and then forgive yourself for being human. Take Kahekili to the Likelike and go right. Take time for grief, because grieving takes time.

Some analogies follow:

Buy shares in my grief.
Take a tax deduction in my grief.
Inherit my grief (it's like the wind!)
Invest in my grief.
It's capital, my grief.
Get a planner for my grief.
Make my grief your ring tone.
My grief needs a college fund.
My grief shall be your nest egg.
Find me a good grief lawyer.
Sue my grief.
My grief reaps dividends (sic).
My grief offers a high rate of interest.
Take out a second mortgage on my grief.
My grief can be high or low risk.
Mutual funds in my grief are a good buy.
My grief is socially responsible.


But we keep as much as take time in our grieving. Janine Oshiro writes:

I kept the time by her going.
I prayed for her return and I prayed for her
return to the dead.


Keeping time is less industrious than taking it. Keeping time is less business than vocation. Keeping time is holding on to it. Keeping time is not reaping it. Keeping time is singing time.


I want a song not a cash register. I want "give a note" to mean a sound and not a pamphlet.


I'm not sure I like mourning described as work, but at least I'm self-employed. (I feel like I stole that from Charles Bernstein, but I didn't.)


I'm on the same line as before; it's just that the points have shifted.


__________


Post-script. At the end of yesterday's reading, Carolyn Hadfield of Revolution Books got up and told us a story about prisoners at Pelican Bay, where all are kept (different sense of "keeping," more like "taking") in solitary. She told a story about one prisoner's joy. After 20 years during which he had seen only his fellow human beings and the blank walls of his cell, one day he saw a dragonfly. (If this punishment not be unusual, then none is.)


Dragonfly momentary in the sight, wings liquid against the light of a prison library. Fill in the analogy to grief's passage here. As you do, be aware that prisons are big business.

Grieving Manuals / Grieving Manually

Yesterday brought me two manuals on grieving. One was a "Bereavement Publication from Heartland Hospice" and the other a poem of sorts, "Recalculating." The article, "Just Breathe" (which uses "breathe" as both noun and verb) is by CG, Bereavement Coordinator. Another article is titled "What Is the Shape of Your Grief Journey." The poem is by C. Bernstein, BS (Bereavement Saboteur). Herewith a collage, including snips from Wikipedia, followed by a brief quiz for the student of bereavement.

__________

We can go on and on with examples of how the physical losses are manifested. Each aspect needs to be death with in a gentle, healing manner. Grief needs safe people and safe places to be expressed. Again remember to breathe.

__________


HCR ManorCare operates primarily under the Heartland, ManorCare Health Services and Arden Courts names. In 2006, it earned $167 million on sales of $3.6 billion.

__________

Each day I know less than the day before. People say that you learn something from such experiences, but I don’t want that knowledge and for me there are no fruits to these experiences, only ashes. I can’t and don’t want to “heal”; perhaps, though, go on in the full force of my disabilities, coexisting with a brokenness that cannot be accommodated, in the dark.
__________

When we imagine people without books, we think of villagers in places like Afghanistan. But many families in the United States have no children’s books at home. In some of the poorest areas of the country, it’s hard to find books for sale. A study (pdf) of low-income neighborhoods in Philadelphia, for example, found a ratio of one book for sale for every 300 children. Tens of millions of poor Americans can’t afford to buy books at all. David Bornstein

__________

Manor Care began in 1959, when Stewart Bainum, Sr., a former plumber, opened a nursing home in Wheaton, Maryland. The company went public in 1969.

__________

Orphaned by the world, with no home but there.

__________


In 1998, Ohio-based Health Care and Retirement Corporation merged with Manor Care to become HCR Manor Care. The company headquarters was consolidated in Toledo.

__________

We are gathered at a site of dialogue. As chaotic as our discussion may sometimes seem, we are always making patterns with them.

__________

In July 2007, the company agreed to a $4.9 billion buyout offer from the private equity firm Carlyle Group; it will no longer be a publicly traded corporation. Analysts said that Carlyle was interested in the company because it owns, rather than leases, nearly all its own facilities and boasts arguably the best real-estate portfolio in the business, with generally well-maintained, newer facilities in good locations, and little mortgage debt. By borrowing against the property to finance the buyout, Manor Care and Carlyle can carry out the deal on favorable terms. The buyout was completed at $67 per share on December 21, 2007. [For more on the Carlyle Group, see here.]

__________

Inside you recognize that life is not the same, you are changed and life is a little harder right now. Being in shock protects you from feeling everything at once.

__________

The tab for Bernstein's poem reads "Just Out."

__________

The absence of ornament is an ornament.

__________

Finding "You" means taking time with yourself. You have experienced an emotional trauma that needs as much tending to as a physical trauma.

__________

Our inalienable rights are inevitably alienated; in this way, capitalism seems to merge with destiny; or our fate, through a darkened glass, is projected onto the world of which we are sentient.

__________

Simplify your life while you are healing the inside. Get help with your surroundings and make them peaceful and life giving.

__________

I’m talking to you, you motherfucker.

__________

What is the shape of your path? For some, though rare, it is a straight line. For some, it's a path with some curves. For some, a jagged course of extreme up and down, in and out, back and forth. For some, it's a path winding slowly inward, then out again, like a labyrinth. For others, it's a spiral circling around again and again, with each completed circle bringing a new understanding of past experience.

__________

As of the end of 2006, the company had approximately 59,500 employees, including part-time employees. About 7,100 employees were salaried; the rest were hourly employees. About 1,400 employees were members of labor unions.

__________

QUIZ. Answer yes or no.

1. Reading pamphlets, poems, articles, and wikipedia has helped me grieve. YES NO

2. There is an inextricable link between style and substance (bottom line profits) in the selections above. YES NO

3. In refusing to "heal," Charles Bernstein is neglecting the duty of the poet to console us. YES NO

4. Are you a member of a labor union? YES NO

5. Is grieving solitary or collaborative? YES NO

6. How do you calculate the debt ceiling of your grief? YES NO

7. Is your grief single or double dip? YES NO

8. Are you talking to me, motherfucker? YES NO

9. How many children's books does your family own? Poetry books? Grief manuals? YES NO

10. Is this work of collage mystical or Marxist? YES NO

11. Are you, or anyone you know, breathing? YES NO

__________

Ed. note: The workers of Heartland Hospice were unwaveringly professional and kind in my dealings with them, as were the caregivers at ManorCare.

Odd Doc Tuesday: Charles Bernstein meets the DOE Ethnicity Information Form

This form came home with my daughter yesterday after I got a call from the school's counselor, a man with a lovely Irish brogue (he would be an L on the form). As you can see if you click on the document, Radhika's parents (both Ls) had listed her as "Other" in the ethnicity category of a previous document. The school informs us that "Other" is no longer a category (would that this were true!). So we were asked to provide a more appropriate label for her. Mr. Ellis read all of these categories to me over the phone; the only one that applied was (R) "Other Asian." How much more specific that is than "Other" is hard to say, but her Nepalese heritage has no place on the form, so she becomes an (R). Her name is Radhika, so I guess that's appropriate. She is a bit jealous of her brother, Sangha, however, who has a category, (N), or Indo Chinese (Ex. Cambodian, Vietnamese, Laotian). Far be it from me to tell the composers of such documents that the Cambodians and the Vietnamese are traditional enemies, and that Cambodians are mostly of mixed races, Khmer, Chinese, and others. For purposes of the form, they exist as (N).

I was reminded of a poem included in Charles Bernstein's new book from Farrar, Straus & Giroux, All The Whiskey in Heaven: Selected Poems. The poem is "In Particular" and was originally published in a beautiful chapbook by Chax Press, Let's Just Say. Written as a list, the poem catalogues people by their ethnicity (or a feature like dyslexia or addiction) and has them do something; it's very much an update of Walt Whitman's section 15 of Song of Myself, a poem that aims to envelope Americans in the bard's long arms, bring closer President and prostitute. You can click on a site oddly called "Infoplease" to see that poem, here. The poem begins this way:

The pure contralto sings in the organ loft,
The carpenter dresses his plank, the tongue of his foreplane
whistles its wild ascending lisp,
The married and unmarried children ride home to their Thanksgiving dinner,
The pilot seizes the king-pin, he heaves down with a strong arm,
The mate stands braced in the whale-boat, lance and harpoon are ready,
The duck-shooter walks by silent and cautious stretches,
The deacons are ordain'd with cross'd hands at the altar,
The spinning-girl retreats and advances to the hum of the big wheel,
The farmer stops by the bars as he walks on a First-day loafe and
looks at the oats and rye,
The lunatic is carried at last to the asylum a confirm'd case,
(He will never sleep any more as he did in the cot in his mother's
bed-room;)

and it ends this way:  

And these tend inward to me, and I tend outward to them,
And such as it is to be of these more or less I am,
And of these one and all I weave the song of myself.

The inward and outward are one, like Stevens's dog and dachsund, because the poet is large enough to encompass them. Bernstein's poem has less poet and more particularity sans commentary. Here are the first two pages of the four and a half page piece.


There's humor here to deflect what now seems grandiosity on Whitman's part: the mixing of ethnic markers with ethnic activities undermines the notion of category, even as the poem runs solely on the principle of category. Hence the Afghanistani who eats pastrami and Filipino eating a potato and a Buddhist financier and an Armenian rowing to the typo of Amenia. [Editor's note: it's not a typo, but a town in New York State.] Bernstein's "conclusion" resembles Whitman's, in that he brings groups together, but his means of doing it leaves the poet out of it, except as a gatherer and randomizer of categories. So the first two lines of the poem: "A black man waiting at a bus stop / A white woman sitting on a stool" are also the poem's last two lines, but inverted in terms of gender: "A white man sitting on a stool / A black woman waiting at a bus stop." Not all boundaries have (or can?) be crossed, but Bernstein suggests that some can be, sometimes.

But back to Radhika's school form, sent to us by "The Federals," as they are termed, by way of her public elementary school. We can surmise from the fact that "'Other' is no longer a category" that categories do sometimes shift. That they spring back, stronger than ever, we glean from the plea for "your help" in finding "the category they now wish you to choose." There's humor in this letter, too, just peaking through the bureaucratic prose. It belongs to the Irishman (L) who composed it. Is his humor Jewish? Or is Bernstein's Irish?