The problem with Alzheimer's narratives, part 2: Rachel Hadas's _Strange Relation_

Let me repeat the problem in writing Alzheimer's, as of my last post: Those from whom one wants to hear word cannot--beyond some point--speak. They cannot describe themselves or the situation in which they exist, just beyond the veil we catch on when we ask those simple questions, like "What's your name?" "Who is the president?" "What day of the week is it?" "Do you want to eat?" Those who write Alzheimer's memoirs, therefore, are not victims, but survivors: children, spouses.

A quick facebook question from Chris McKinney allows me to refine my statement of the problem a bit. If the problem can be explained in terms of literary form, then it is two-pronged. On the one hand, the Alzheimer's memoirist uses the first-person pronoun, which makes him or her, not the person who has Alzheimer's, the central focus of the work. On the other, the form of the work, no matter what the genre, tends to be realist, self-contained, linear. It presumes that stories matter because they make sense, the kind of sense that leads the reader from a beginning to a middle and then an end. Between the first person pronoun, which presumes a singular identity, and the narrative, which presumes development of some kind, the very forms used by most writers about Alzheimer's fail in the face of a condition whose "progress" is regression, degeneration, falling apart. This condition fails-to-work on the level of the sentence, as much as on the level of memory, cognition, physical movement. What these texts offer (sense-making) is consolation. But Alzheimer's defeats literary consolation, as it defeats other forms of it, as well. The elegy demands an ending before it opens; Alzheimer's refuses to offer one. It's like Xeno's paradox, to which there is no apt marker.

My last post engaged Jonathan Franzen's essay, "My Father's Brain," along these lines (or tangles). That essay comes up in the next text I'd like to examine, namely Rachel Hadas's book, Strange Relation: A Memoir of Marriage, Dementia, and Poetry (Paul Dry Books, 2011). Early on, as she thinks about how mysterious is the onset of Alzheimer's, she quotes Franzen's essay. Like Franzen, Hadas has lived with a man (her husband, George Edwards) who never was communicative, warm, friendly; like him, she wonders when that natural interiority became the awful inwardness of dementia. She also cites Franzen's sentence, "I still needed him to be an actor in the story of myself" (21), as a marker of how we fail to see "anyone else's behavior as a whole" (20).

Like Franzen's essay, Hadas's book is written in straightforward (and in her case often beautiful) prose. The book is as much about poetry as it is about Alzheimer's; clearly, Hadas's primary refuge from the awful rigors of living for upwards of a decade with a man who is no longer who he was is to read and write poetry. These poems, like the book itself, are formalist: they follow clear, traditional rules. Even when the lines and sentences are about collapse they do their work. They are sturdy. There is nobility in this sturdiness, but there is also something missing from it. What often seems missing is George, the husband, the (or one) subject of the book. The terrible rawness of her encounter with Alzheimer's is written over, made smooth--even as the information she relays is awful. Too often (but oh so understandably) this poet who loves similes uses it to leave behind the situation she has thrown us in: "The one-way road, the slow train, the uncertain sky: all these helped me, if not to understand what was going on, then to understand how little I could do about it, and, with this understanding, to manage the ups and downs, the fitful bursts of sunshine succeeded by more clouds" (48).

On the very next page, Hadas tells us that George "virtually never used the pronoun 'I,' as in 'I'm tired,' 'I'm hungry,' 'I want...'" (49). Whether or not the lack of a personal pronoun indicates lack of agency or self is a debate I'll leave to the experts (linguists? psychologists? neurologists?), but this fact--his lack of an "I"--is moving. I feel an emotional and intellectual tug here. I want to stop, absorb this news, let it settle. But instead, this news leads to perhaps the most problematic passage in the book, where Hadas and her sister develop "similes" for George. "George silently drifted in from the living room and sat down opposite her at the table, eyeing her plate (as she said later) 'like a cow coming up to the fence'" (49). Hadas thinks this simile worthy of Homer; more in the Disney vein is the comparison of George to a "'giant hamster'" (49). "But everyone who heard it laughed," she reports; "it was funny, and right, and helpful. In the world of dementia, a laugh, like a simile, is something they don't write prescriptions for" (49). Let me tread softly here, because I also know how funny Alzheimer's patients can be, how laughter among the caretakers can ease many a traumatic moment. But in this paragraph, which I take to be well-meaning, "the world of dementia" exists for those who retain their "I's," not for those who do not. While the paragraph begins with George's lack of self, it ends with the humorous assertions of the non-demented self, making similes of the demented one's dis-ease. George is not literature; he suffers. I've told this story before, but when I gave a talk on Dementia Blog at the Center for Literary Biography in 2008, I said that Alzheimer's is like a neutron bomb; it destroys everything inside the body, but leaves the shell. The old woman who called me on that metaphor was right. There is more than shell, more than bumbling, to an Alzheimer's patient.

Hadas is honest in her admission that the book is as much--or more--about her struggles with the illness than with her husband's: "Much has been written about dementia as an insidious disease. Few writers, however, talk about the insidiousness of the way a person living alongside the disease is first blind to it and then grows used to it" (115). She is also honest in expressing the "bad" feelings she has toward his silences, his inabilities, about her own loneliness, and the doubts she begins to feel about their earlier, happier, life together. This aspect of the book, its raw honesty, reminds me of Jana Wolff's Secret Thoughts of an Adoptive Mother, a book that lays out an adoptive parents' fears in ways that most of us bob and weave to avoid saying out loud. Hadas says it by extending her simile: "There's the one-way road and the changeable sky; the cow at the fence and the tall hamster; and the prison house called marriage . . . Be careful what you wish for: Here I am, immured alongside him" (52).

The form of Hadas's life becomes one of confinement, not chaos. As a poet friend said to me the other day, we see the world in the forms that are most natural to us. And so Hadas sees the world in poetic forms that I am suspicious of, forms that contain rather than forms that open out. She still believes--wants to believe--that poetry can contain the pain she feels. In describing the end of a summer vacation, through the words of Frank Kermode, she expresses her belief in patterns, forms: "People 'in the middest,' as Kermode observes, 'make considerable imaginative investments in coherent patterns which, by the provision of an end, make possible a satisfying consonance with the origins and the middle" (168). Hence, "No person could hold these strong feelings in suspension, give them a shape we can grasp, an articulation we can remember. No one person could. But sometimes poetry can" (121). The kind of poetry Hadas reads for meaning is graspable; its meanings come in boxes, containers, rooms (like the stanza's). There is not even the instability of the sonnet sequence, in which each poem only stays our confusion until the next poem re-opens the paradox, problem, wound, and tries--again--to solve or salve it. Perhaps closest to the tradition that makes sense (ironic, eh?) of this perplex is Dickinson's poetry. Hadas quotes the poem that contains this stanza:

Ruin is form--Devil's work
Consecutive and slow--
Fail in an instant, no man did
Slipping--is Crash's law.

But how devious is Dickinson here. Crash has a law, yes, but "law" only half-rhymes with "slow." The discomfort left by the near-rhyme evokes the discomfort one feels in thinking about Ruin or the Devil. Hadas reads this poem as capturing "the theme of the extreme insidiousness of the loss" [of dementia]; what strikes me is that the "failure" of the rhyme (deliberate as it may be) evokes insidiousness rather than merely conveys it.

This idea that the text should evoke and not convey thought and feeling leads me to the two moments in Hadas's book that I find most powerful. The first, which offers a half-rhyme to Jonathan Franzen's citation of a letter his father wrote to a grandson, but never sent, is a "stray sheet of yellow legal paper somewhere in his room" (160). She writes, "I seem to need to keep this piece of paper near me. Sometimes when people ask how George is doing I have the impulse to show it to them. If they are people I like and trust, sometimes I do show it to them" (160). And then she shows it. I would like to think that her trust in this one reader she does not know is earned:



As I proof-read this post, I realize that I have said nothing about this page. What is moving about it is that the composer of it has asserted himself (his name is at the top), despite great difficulty holding the pen; that he is trying with great, graphic, difficulty to get out thoughts he cannot compass ("in in a a less more sens sense in more less the less morre the my more the producte..."); that his language IS still eloquent (think Gertrude Stein, think the residents of my mother's Alzheimer's home, whose words I did my best to transcribe here); that he is still making something. I accept Hadas's gift of this page with tenderness and not a little anxiety. More than the rest of the book, this is mine to deal with as I can; I'm set out on the same skiff she's on, and I'm not sure how to steer it, if it can be steered. So it's not simply the form (yellow legal pad with writing on it) or the content (which cannot be ascertained), but some combination of them both that pierces through the narrative voice and the reader's eye/ear.

The other moment occurs at the end of the book. This is the final paragraph:

George tries to catch some of the bubbles we're blowing, and laughs. Other bubbles land with a silent plop on the pages of the coloring book I've brought out again with the paints, brushes, and a glass of water. I've just about finished the fish mandala, and for a change of pace I open the medieval tapestry coloring book Amy passed on to me. I choose a picture of Death riding a pale horse. I think I'll paint the sky an ominous, apocalyptic red. But for now, I twirl a small brush first in the green paint, then in the yellow, and begin to color in the leaves on the greens of the forest through which Death is riding. (199)

Bubbles, coloring book, mandala. All of these are beautiful, and none of them lasts. I can see George blowing bubbles, coloring; I can hear him laugh. He exists for me on this page in a way he has not lived on any page before this. Each object--bubble, coloring book, mandala--arrives at a form and then loses it. Each loss is as it should be. (Remember the little boy who destroyed a mandala in Kansas City, and the monks who then simply set about making it again, so that it could again be dissolved?) Death is riding, but that's an active verb, and the poet's attention is, in any case, not on him but on the "leaves of the trees of the forest" (199). Just after quoting Frank Kermode on "coherent patterns," (see above) Hadas writes, "Absent these imaginative investments in patterns, endings are always problematic." In this last paragraph of her book, she has found a way to invest in patterns, while accepting the problematic non-ending of her husband's illness. Form and formlessness, coming into being and leaving it, these mark the oscillations that will perhaps offer Hadas another beginning, another leaf on the tree that the horseman will, inevitably, pass by.



Next up: Alzheimer's and the editor

The problem with Alzheimer's narratives

This is the first of at least three forthcoming posts on Alzheimer's and narrative, which work toward a conference paper in London in early April at Brunel University for the New Cultures of Ageing Conference.

Problem:

Those from whom one wants to hear word cannot--beyond some point--speak. They cannot describe themselves or the situation in which they exist, just beyond the veil we catch on when we ask those simple questions, like "What's your name?" "Who is the president?" "What day of the week is it?" "Do you want to eat?" Those who write Alzheimer's memoirs, therefore, are not victims, but survivors: children, spouses. Between the silence imposed by the illness and the very real problem of how to engage with an unengageable fact, Alzheimer's narratives (non-fiction, fiction, even poems) can't get at the disease. Most devolve into memoirs of living with the disease, rather than experiencing it; they are about the disease, not the person suffering the disease. If I am the person constantly talking about my relative with Alzheimer's, then she becomes nothing more than a cover for the illness. The illness, one might say, does all of the not-talking. Even more troubling, the fact of non-response inspires festivals of the first person, discursive accounts that put the spectator between the reader and what she reads about. As I (ah, the dreaded first person) read these memoirs, I want to swat the spectator away. It's like watching a great baseball game and being constantly interrupted by prattling announcers whose minds and mouths are elsewhere. But enough editorializing, for now.

In a Ph.D. examination defense recently, one of my colleagues asked the candidate what he thought of contemporary fiction's reliance on the first person. There's not much student fiction, on any level, he said, that isn't written from that solitary viewpoint. The test taker agreed, and responded that it was easier to circumscribe the world through a single view than through a more comprehensive (we, they, the omniscient guy) view. That it was a case of "write what you know" gone monotone. This got me to thinking about how memoirs suffer from this problem, too. Of course one assumes that a memoir will be told in the first person, but if the memoir is actually about someone else, the person with an illness that renders them mute, then how to jump-start a "we," when "we" is a concept known only to the writer and not to the subject of her writing? It all begins to feel like higher math, but math that describes terrible loss, the loss of one or more pronoun-selves. Some sort of null-set in words.

The New Yorker of September 10, 2001, oh day before the day we're told the world changed, contained an essay by Jonathan Franzen called "My Father's Brain"; it's collected in his 2003 essay collection, How To Be Alone. This essay, which runs approximately 30 pages in the book, tells the story of Earl Franzen's last years, those during which he (and his wife) suffered through his Alzheimer's. Never a terribly communicative man, Earl Franzen became less and less talkative, and finally died in the hospital in the mid-1990s. The son who writes the story came and went, trying his best to help out his mother. In the style of creative non-fiction, Franzen writes into his own narrative that of Alois Alzheimer's discovery of the disease. He has done his research, drawing from David Shenk's The Forgetting and other sources. He also draws from family letters--letters to him from his mother, letters from his father, when he could still write. Like all Alzheimer's tales, the story causes its teller pain early, and ends late.

The most moving part of the essay is a transcription of the letter Earl Franzen wrote to a grandson in 1992, but left in a drawer, rather than send it. "I know that my writing will not be easy to read, but I have a problem with the nerves in my legs and tremors in my hands. In looking at what I have written, I expect you will have difficulty to understand, but with a little luck, I may keep up with you," he writes (35). The letter ends with a brief report on the weather and a P.S. thanking the boy for "gifts." How very hard to understand a letter that is not even sent. The not-sending adds to the reader's feeling in reading the letter the boy never received. There's also something powerful in the phrase "I know that my writing will not be easy to read," as one imagines how difficult it was to write such a simple sentence. As John Emil Vincent noted about Ashbery's "difficulty," it simply goes with the territory, whether that territory is queer or demented. There's more than one difficulty here, and they're both difficult to absorb.

So why is Jonathan Franzen's essay so difficult to read? It's not the prose, which flows easily, gathers narrative momentum and then stops when Earl Franzen's heart does. It's not that Franzen is overly sentimental, because he is not; he recognizes the difficulties in his parents' marriage and in his own actions toward them. But it's difficult to read because there's so little of the father in the essay (despite its title, "My Father's Brain") and so very much of the narrator. Over the course of the 30 pages in the book, Franzen uses the first person pronoun, I, 172 times. That's not counting the "me" and "my" that often accompanies the "I," as in "my father." Despite the several pages of facts, on which there are very few references to Jonathan Franzen, he is using the first person, on average, between five and six times per page.

Now some of these "I's" are inevitable in such a story. But what is most striking is that the I-count rises precipitously just as Franzen senior dies. The story of the father nearly disappears in the shadow of the son's first person. But let me begin from the problem of story and return to the first person issue later. In such a story, which follows a linear narrative, the narrator must set forth his stake in the story, and then lead us from incident to incident; he must make sense along the way, because stories make sense. (That Alzheimer's does not, at least not in the way we usually think of sense, is a big problem.) But Franzen thinks a lot about story; he tells his stories a lot. He tells stories about telling his stories. Of the February day when he received the report of his father's autopsy from his mother, along with a greeting card, two Mr. Goodbars, and a heart on a loop of thread. "But the fact that I've re-remembered that February morning countless times since then, I've told the story to my brothers, I've offered it as an Outrageous Mother Incident to friends of mine who enjoy that kind of thing, I've even, shameful to report, told people I hardly know at all" (9). One wonders if we readers, the ones he "hardly know[s] at all" still provoke shame, if he keeps telling the story about the story to mitigate that shame. Or if his recursiveness is more about addressing that shame than getting at the meaning of his father's dying and death.

The storyteller cannot control his story. That bothers him. As he writes a couple pages later, even before he tells us that his father took "a narrative interest in life" (12): "This was his disease. It was also, you could argue, his story. But you have to let me tell it" (11). This is not an invitation; this is an order, akin to Whitman's "what I assume you shall assume," if not so eloquently ordained. The reader must hear it from Jonathan Franzen. It must be mediated through this narrative that moves forward into a future that will end with the father's death. His father will not tell the story, except in that one letter. As if to reinforce this new order, Franzen continues: "Indeed, I'm somewhat appalled by how large I loom in my own memories, how peripheral my parents are" (11). He figures that this self-looming is due to his absence from his parents' lives, the fact that he only enters the scene every so often as "a U.N. peacekeeping force" (12). When the younger Franzen comes to help his mother deal with her own surgery and the decline of her husband, on a page that contains 14 first persons (the moments of crisis elicit the most I-statements), he notes: "In a similar way, I think I was inclined to interpolate across my father's silences and mental absences and to persist in seeing him as the same old wholly whole Earl Franzen. I still needed him to be an actor in my story of myself" (15).

Another of these moments of crisis occurred, for Jonathan Franzen, when he had to come to terms with the very concept of Alzheimer's disease. For a long time, he had refused to acknowledge his father's steady, but slow, decay, and had been suspicious of the "illness" (as are many of us when first confronted by mental illnesses, our own or others'). When he does realize that the something that is wrong is biological, he gets there in a flurry of "I's": "They point to the brain as meat. And, where I ought to recognize that, yes, the brain is meat, I seem instead to maintain a blind spot across which I then interpolate stories that emphasize the more soul-like aspects of the self" (19). The blind spot is productive, because it generates stories, and stories mean more than biology can offer. (I know that one well, myself.) That Franzen acknowledges that his "sense of private selfhood turns out to have been illusory" (20) is wise. But it does not have any effect on the form of his telling the story. He has arrived at a recognition that ought to recast story itself, but the story marches on, like Wily Coyote who's gone off the cliff, but still runs as per usual.

Wisdom occurs in bursts of first persons, then. "I found that watching my father lose all three [intelligence and sanity and self-consciousness] made me less afraid of losing them myself. I became a little less afraid in general. A bad door opened, and I found I was able to walk through it" (25). Or "I can't stop looking for meaning in the two years that followed his loss of his supposed 'self,' and I can't stop finding it" (30). But how can the notion of "supposed self" sustain a straightforward narrative? And what of Mr. Franzen, the elder? He is teacher, but who else might he be?

And then Earl Franzen dies. Over the course of the two pages of his dying, his son uses the first person 30 times, 11 on page 36, when he goes into the hospital to see his father, and 10 on page 37, when Earl Franzen passes on. His death is long: "And still he didn't die. . . . my mother and I sat in the dark. I don't like to remember how impatient I was for my father's breathing to stop, how ready to be free of him I was. I don't like to imagine what he was feeling as he lay there, what dim or vivid sensory or emotional forms his struggle took inside his head. But I also don't like to believe that there was nothing" (37). Even his father's death is announced by the son, as it happened, and as it happens again for us: "when I noticed that he was drawing his hands up toward his throat, I said, 'I think something is happening'" (37). That something is happening marks the ending. Death is what happens for the son, even as death is what begins the long non-happening for the father.

And so the story of the father's loss of self, first through illness and then in death, is met by constant assertions of the son's/author's self. There's an almost too-clear conjunction between loss and recompense, where that recompense is insisted upon, nearly shouted out, on every page. To acknowledge the author's own unraveling as he gazes in the mirror of his father's dying would be to acknowledge the lack of power of story in the way he tells it. So there's a double anxiety here. I am, and I tell stories. Damn it!

And if one were to answer the story's unraveling with an unraveling story?

Solution? Stay posted. There isn't one certain, but there are strategies to consider.