Friday, April 26, 2013

Alzheimer's, a visit & some exercises

Yesterday, Lori Yancura and I took our small class of three to the Hi`olani Alzheimer's wing of the Kāhala Nui Retirement Home in Honolulu.  They call what they do "memory support," though of course there are few memories left to support. Our course is almost over, so it seemed time to meet some of the people about whom our literature and Family Resources essays were written, those behind the statistics, the sentences long and short, the words whole or incomplete.  Preston Kim, the head nurse, showed us around; we saw the long corridors, the lanai where some residents are able still to garden, the dining area, and finally the common area, where residents had been playing a game called "horse race." We entered a "serenity room," featuring "stars" on the ceiling, and a slide show (not on) to calm residents during sundowning periods. Several residents sat in a circle, broken by a large glass area in which a parrot named Queenie lives; Queenie chattered quite a bit and at one point knocked on the class with her(?) beak. Most of the residents were taciturn: the Colonel who told me he wasn't a colonel any more, because he's not in the Army.  His lips quivered with the effort to make words move from his mind into the short space between us. Another vet (not from The War, he told me) promptly got up and left the room, leaving his bag of chips behind. A woman eating her chips alternated between saying she didn't want them, holding them in front of her to look closely, then chewing slowly. A man called Papa, incredibly knock-kneed, entered with a walker, his left arm bruised from hand to elbow. He did not use this arm when he hit the yellow "ballooney ball" back to the caregiver. A woman who was clearly the trouble maker poked her neighbor, later teasing him with the bright yellow ballooney ball, before tossing it to the young woman in green uniform. Then there was the talkative woman, seated next to Lori, who carried on a conversation for the entire 40 minutes we sat in the group. Lori called Kapena Landgraf over, thinking that she was at UH at the same time as Kapena's grandfather, about whom he wrote his M.A. thesis.  Kapena noted later that his heart sank when he heard the woman lose her focus on memories of her life and lapse--repeatedly--into stanzas of the UH alma mater, stanzas that she couldn't finish. Residents of the home are overwhelmingly Asian, a cultural and economic marker in Hawai`i for sure, but no matter their wealth or culture, they are typical (in the dispassionate form of the word) Alzheimer's patients.


When next I write at length about Alzheimer's--and it seems there is more to write, if not about my experience with my mother--I will devote part of the book to an examination of Alzheimer's and the avant-garde.  But I hope not only to write critically about that relationship, but to offer exercises that can be used in workshops of writers and caregivers and family members to illustrate the effect of the illness on language.  Let me note a few of these exercises here:

--You are looking for the refrigerator in your house, but you can't remember where it is. The word "refrigerator" has also disappeared from your mind.  Write a brief passage about your search.

--Assume that more language has gone away; not only have you forgotten the word for "refrigerator" and the lay-out of your house, but you've also lost the ability to form a complete sentence. Write a passage in which you begin sentences, but get lost in others as you go.

--Take this last passage and erase most of the words, as well as parts of words, until you have only a few fragments of language on the page.  (B.S. Johnson's Rosetta Stanton is a model for this exercise.)

There will be many more.

Wednesday, April 24, 2013

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 . . .