[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):
"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.
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