NO CHEESE: June 1 in the Alzheimer's home

Monday. Common area: television, on. Music in background.

Act One: 10 a.m.

My mommy's having a baby! A baby, a baby, a baby!

G & P sit on the sofa.
P's eyes dark, deep, her face white as powder.
G has her head on P's right shoulder.

Look! Two babies. Twins! The babies, the babies, the babies!

"I can't hear a word you're saying."

"I said get out!"

"It's hard for her because she dddddd." [Hands flutter at waist]

P tries to stand up.
G tries to kiss her right arm.
P falls back.
They resume their position.

A vicious German defense brought the Allied advance to a halt at Casino.
People say I look 10 years younger; I look 10 years younger.

"Do you remember, World War II, mom?"
"No."

P begins to cry. She embraces K, who starts to take her for a walk.
"Where are your shoes? You need shoes to walk. You need to stop
crying or we can't go for a walk."

P & G resume positions on the couch.

I've been looking for a long time for someone to talk to and you're it because you can't understand one word I say to you. I want to talk about my girl back home. You I can tell the truth to

s s s s s s s - v v v v v v v v - s s s s
guh guh gonna go
There wasn't much time to think about women

P is cold, she's cold. She crosses her arms over pink & white striped blouse and a pink cross on a pink necklace. She wipes her cheeks on the bottom of her shirt.

"Marvelous! Good. Nothing." This woman, also in stripes, runs off with my mother's elbow straw from her can of Ensure. "How do you do your air?"

The luckiest people in the world


Act II: 4:30 p.m.


"Yer not talkin to yerself--I'm listenin'." [F to self]

Why oh why can't I
They love everyone but you on top of this f__ hill.

"She's a witch, I tell ya--that's what she is."

"Are you with the police again? Your mother asks me out for beers, but I think I'm too young for her. We had a luau the other day, the hula dancers had their tops on, very disappointing. When you go back to Hawai'i, send me a shrunken head, ok, but make sure the eyes are closed."

F: "He showed us that, I was wanting to go to the 5th floor; didn't know how to, must be the 1st floor where they cook stuff."

"They don't care about us."

"What's your first name?" Susan
"What's your name?" Susan
"Susan, and I still don't know it."
tangerine -- [gunfire] -- across the pond, yes she has
"Ruth, what is your name?"

"I'm Martha's daughter."
"I guess not."

"I'm going to do half a bugle,
Shiloh fast--
Is she going to win you, too?
But they'll be all right.
What we're going to do and have Ann's lot."

"I'D KICK HER ASS."

"They're all happy on this side
I got enough enough
Disquella, disk-la
That's the porty of the way."

"NO CHEESE!!!!"

"The name of the name of someone who is very cloned?
How is your doing?"

Mom: "don't bother me, don't bother me."

"Is your mom and dad doing it?"

"I'll make a noise."

J weeps over dinner. Her neighbor says:
"You're one of my favorite people."

"I lost my keys."
"That was peas, too."

"4 5 5 5 5 5
Her story is see you in a better place."

"You're the classiest gal in the whole world.
Don't be frightened."

Maybe this time I'll

"I want to go to the police
yes yes yes
to do something."

"Please don't throw us out.
Don't shut us off, please."

"I want to GET OUT,
what they're doing to me
NO NO."


ACT III: After dinner

"Have you heard the one about the mushrooms?"

"Have you heard the one about the two carrots?"

'The key is in the sunlight at the window in the bars the key is in the sunlight.'

--Your mother was in the common room after dinner on Tuesday, wasn't she? I was surprised to see her there, says the new resident's relative. The new resident is Io, who screamed help! the day my mother died.

--No, she died at 6 p.m. She couldn't move.

--My mother always asked why her husband never visited after he died. She had psychic powers. She worked on them. I have them, too, but I'm scared to push; you can get to the dark side so quickly. Your mom was sitting in that chair. She would usually greet me, if only with her eyes. But this time there was no response.

--I don't usually tell people, she adds, so they don't think I'm loony.


--I left deliberately, says the gentlest caregiver. I pray for you, you know. You're always here alone. Be strong. Yes, I heard the story from R. about your father's voice. He told me.


The lawyer says it doesn't matter about the will if you're an only child. There's some hierarchy, her assistant tells me, before she arrives. Marriage, children, unless you remarry and there are more children, or earlier ones. I get lost in the possibles.


--No, there's no funeral, I tell the cook, who asks about a bewing. She gave her body to science, and then I'll get the ashes. Never wanted a funeral anyway.

--I can see that! I'd love to have my remains spread in the ocean waters.

--Let me do it for you. We have lots of ocean.


She will rest in peace, the old neighbor writes from his Android. Everything an ad, an alert, a pointer toward. The lawyer says her niece, the one going to Vandy, loves Walmart. Let me tell you, she said to her niece. How you spend your money.


I always get lost in Arlington. I plot out my route, and I follow it. Up to a point. The Washington Monument appears and it's not what I want. Circle back, find the lawyer. Are you lost, too? asks S, when I say good-bye to her. She carries two purses, full of apples, oranges. No, not this time, I say.


I say good-bye to Mrs. L, to whom I gave mom's orange dog, the one with alien eyes. I kept the rabbit she held when she died. Mrs. L. looks at me and laughs. I say good-bye again. She laughs.


I say good-bye to F, the woman who talks, even if sentences are not plotted against a graph of sense. I'm tired, she tells me. So droopy. She was fighting the caregivers the other day, didn't want the girls to have to help her in the bathroom. Her white narrow-cabled sweater has a stain on the front, like my mom's when I left it in her room to be given away.


I thank T for her kindness. She says her daughter brought her here, holds out her hand, as if her daughter were seven or eight years old. She turns the wrong way. G. says they haven't served lunch. Only a cracker. Only cheese and a cracker. She's hungry. Walks to the clock in the right corridor, where I've led them. Two hours until they feed us!


M practices telling time over dinner, looks at the hands, the every other number on her father's watch. Her brother walks us through his trilogy. Templars, an Academy, children being misused to violent purpose. He and a friend infiltrating to save them. A hole in the wall that's meant to look like a hole in the wall, though it isn't.


I say good-bye to them, too. There's no reason to return, if you take family as the baseline, "blood relation" as trump card, though blood thins. That's odd, her pulse is normal, just weak, said the nurse, a minute before mom passed.


She fought so hard to stay alive. It was time, L tells me.

Amazing how they know when it's time to die, says E. Shook her head. No food. No more. Willed it.


"Strange to think of you, gone without corsets & eyes, while I walk on the pavement of Greenwich Village."


Whom to believe, the one who saw her struggle to live, or the one who saw her choose her exit? She was in her bed when she was in the chair after dinner. She was a ball of light in my hotel room. She was whatever was intended.

__________

Two lines of poetry from Allen Ginsberg's Kaddish and Related Poems (1959-1960) from his Collected Poems.

Thank you to Josh & Gini, Sam & Meera, to Kyle, Pia, & Esben, & to Steve, Ellen & Max for three mind-lifting evenings of good & loving company this week. To Jerry, who gave me back my father's voice so soon after my mother died. To Elizabeth Wildhack, Esq. & the adroit accountant, Arlene Millican. And to everyone who called, wrote, facebooked, emailed, took time. Thank you to the caregivers, the hospice workers, the doctor (Hermes!) who arrived at mom's door the very moment she died, the compassionate people who populate this world that I leave, for now, & to which return is required, but not always to be feared.

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.

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

Memorial Day at the Alzheimer's Home

[on television around the corner from the lunch room: The Devil's Brigade]

The speaker of most lines is an old woman with a New England accent. There is music in the background.

"I want to see my two younger rooms."

"You wouldn't expect her to pick your feet, would you?"

"Everyone has feelings."

"Just forget it!"

"My place--there--they didn't give you--gauze--because she didn't really want to do it--maybe it was her daughter--which would be who--give it all back to her and . . . house, yeah, had it described, especially."

"I think legally they can't do that."

P enters on the arm of a social worker. P's face is blue, her shirt is blue. P still moans, though more quietly than last time. The swelling's gone down, I'm told. Are you upset about something, the social worker asks her, after they sit at the window.

"Every boy that you are."

Don't eat the ice. She eats the ice. Moves a cube from one plastic glass to another, her fingernails pink, like mom's. Her neighbor who doesn't speak indicates there's something wrong. She pushes back the table cloth, lifts her glass, tries to place it in her neighbor's bowl of pear slices.

"Candy. We've been a single and a diamond. Have to get a new job. A sensitive person. They have squares and they have one place to another."

Children. Children who need other children. And yet letting our grown up pride. Like children.

"That jacket, 12, try to change, 18 is it?"

People who need people are the luckiest people in the world. One very special person, your soul, half and now you're whole, the luckiest people in the world.

"Look over that car talking."

"NO CHEESE!"

I'm in love again and the feelings. Yes. And I know what to do.

"Pay for it--cash.
Another one she did. I know she made she seemed to travel 7. Yes she said, just the one."

My love went to London, left not returned, I'm going to London.

"The first guy. After I, you were, yes I was surprised.
Avoid 5.
1, 2, and then oy 5.
They get I don't"

There's a story told
To love easy to learn women promise
She never sighed or cried.

Think so I put that on before I finished it
Her engine and I think it's moving" (regards sweet potato from above, below).

Every rolling stone
Home sweet home
I'm a rolling stone until today

"That's what it was they, they told her
We did we saw it
8 books 8 hours the time we spent.
They were forced to visit
50 of age."

Railroad track
Taken on back
Why did I decide to go?

Mrs. L is Korean, translated from Japanese, lived in China. Speaks no language now. Her son a doctor, comes on the weekends, not this one.

WHY DO I ALWAYS GET THE SMALL PART?

"Sadie's pastor.
Werner's yeah."

ICE CREAM!!

God bless the child that's got his own.

"I haven't got a pan.
If I can get in 6 towns.
By color except by or black
I know she think she had her
(laughs) came up & says"

Something's bound to begin

I remember
My mother was at Anzio.

Art and Poetry at The Contemporary Museum, Honolulu, April 18, 2010

[I cannot turn this program right-side up, so in the spirit of a piece Elizabeth Berdann sent me on email the other day (I said, "it's fine, but it's sideways," and she responded, "I wanted it that way"), I am presenting it as a rectangle. Turn your head and/or your screen, the better to read it.]


At 2 p.m. on Sunday, April 18, 2010, in the city of Honolulu in the neighborhood of Makiki, poets gathered to read work they had written in response to the Words Off the Wall exhibition at the Museum. I wrote an earlier post about the pre-write tour of the exhibition organized by Quala-Lynn Young. The post-write tour included "teams" of poets who had written on particular artists, chosen because of their concern for the body.


Team Fay Ku included Christina Low, Jade Sunouchi (seen above with the artist), Julie Tanji, Amalia Bueno, and No`u Revilla.




Team Elizabeth Berdann consisted of Neomary Soriano-Calderon (a 9th grader at Mililani High School), Susan M. Schultz, Jaimie Gusman, and Rachel Wolf. Allison Schulnik's team was made up of Tayla Yogi, another 9th grader, and Evan Nagle, a post-MFA newcomer to Hawai`i, by way of his girlfriend, Jaimie Gusman. Judy Fox provoked a poem from Jeff Walt, a Goddard MFA discovered at the reception desk of the museum, where he volunteers once a week.

I was unable to take down full accounts of the poems, but registered some single lines:

--Christina Low, from "Mer": "Make me a stone that sinks to the bottom of the sea"; later she said she saw the painting, "Alarmed Mermaid," once and then worked off her memory of it.

--Jade Sunouchi, from "Birdfeed": "wings partitioned into fingers," a fine image for metamorphosis. Here is the painting she and Julie and Amalia wrote about.

--Julie Tanji, who carried Japanese characters with her and held them up, yelled, "I am not invisible!"

--Amalia Bueno used Prometheus as her mythological reference for the Fay Ku painting that three poets chose to write on;

--No`u Revilla performed her poem about four young women braiding a horse's mane, largely from memory, and repeated the refrain, "I am your mother." She said she wrote about this painting because the one young woman seemed not to fit, belong, seemed outside the emotional energy of the poem. That was the woman on whom she focused her care.

--Jaimie Gusman wrote about Elizabeth Berdann's wall of 31 tongues, considering the tongues to be a map. Her speaker put the tongues on, over her head. As usual, Jaimie's work featured quick cuts between pathos and silliness, lyric and faux advertising copy.

--Rachel Wolf wrote about Berdann's "Ghost," the painting of an old person upside down on cloth. Among her zingers was the phrase "chamois shaman."

--Tayla Yogi, one of Steve Schick's 9th graders from Mililani, wrote a poem of various pronouns, "she/her/me/myself/I" to go along with the melting hobo of Allison Schulnik's video. Everyone was impressed by how bravely she and Neomary performed their poems.

--Evan Nagle took that video and made text values for the pixels, found phrases through webcrawler, employed a spam/poetic filter, and ended up with phrases like "save a puppy from the pound or something." His was the least representative of the poems--it was not in the least so--but an eye opener for the audience.

The reading was followed by a reception that featured cheese sticks, hunks of cheese, and fruit, mingling, and much photography before we dispersed and I, for one, returned to the Sunday "night" baseball game between the Cardinals and the Mets, which the Cardinals won.



[from left to right: Jeff Walt, Quala-Lynn Young, Jaimie Gusman, Evan Nagle, Christina Low, Rachel Wolf, Julie Tanji, No`u Revilla, Susan M. Schultz, Jade Sunouchi, Amalia Bueno, Neomary Soriano-Calderon; not in the picture because she had a softball game to play in was Tayla Yogi)

Many thanks to Quala-Lynn Young for organizing the event and to Shantel Grace for writing about it, over and again.

Dementia meditation, bike ride 6/21/10

The problem is not dying; the problem is not dying. The phrase has run through my head for days now, like a prosody exercise with bite (over-bite).

Startled four good-sized tan and black piglets along Kam Highway before He`eia Pier. They turned and ducked into the brush, wagging their little tails.

One small blue sandal on the shoulder of Kahekili. Left or right?

Google search that lands on this blog: dementia patient does not know difference between 2 hours and 2 minutes; a second wonders about links between cheese and Alzheimer's.

Birds singing from a monkey pod at the corner of Kahekili and Hui Iwa as the light waits to change. Where's the change? my Republican interlocutor demanded on the plane. Said environmentalists were to blame for the Gulf disaster; they forced the oil companies to drill in deep water. Otherwise, they'd drill on land. Our mothers-with-dementia stories matched.

Katy Butler writes in the NY Times about how she and her mother turned off her father's pacemaker. Demented, the pacemaker kept him alive, a kind of perverted fountain of youth. Teresias with a tiny engine in his chest. Sudden death is out of fashion these days. We insist that our good-byes go on, and on.

No one has found the line between what we are willing to concede and what we cannot any longer resist. It's the border between legal and alien territories, between the place where they do not ask for ID and the place where they will not accept it. It's somewhere before or after the keys are taken away or the 3 a.m. wanderings begin or the CIA has implanted a mic in your forehead. When you reach the border, you are no longer capable of refusing yourself entry. Fantasies of carbon dioxide forgotten. You cannot remember to have killed yourself.

The verbs peel away, as if you are slowly forgetting French, volume by volume of grammar exercises. The past is not simple or conditional or subjunctive. It cannot be conjugated. There is absence in the present tense before that, also, ducks away. Scattershot nouns, processed with unaffiliated verbs, pesto of pine and saw dust.

The cat turns on the phone by lying on it. Sangha called 911 when he was 15 months old. Someone at your number called. Is there an emergency? She found joy in noticing the stones, the daffodils. She found joy in noticing them again. She found joy. There was an instant, unremembered. Past that now, she "dwindles," dies passively.

"Mom," I wanted to say, I'm ready to give up if you are." Instead, I asked if I could kiss her cheek. She said yes. Soft.