"I wandered lonely as a cloud": Lyric Selfhood and Alzheimer's

In their 1992 article, "The Construction and Deconstruction of Self in Alzheimer's Disease," Steven Sabat and Rom Harre assert that so long as "the [dementia] sufferer can be shown to employ first person indexicals coherently in his or her discourse . . . the sufferer has displayed an intact self." According to Jesse F. Ballenger, in whose excellent book I found this quotation, "The authors considered the possibility that the appropriate use of pronouns could simply be a habit . . . but they argue that the competence displayed is too high an order for this to be the case" (169). How odd to claim that selfhood exists if one can say "I" and fails to exist when one cannot. When I visualize the common area of my mother's Alzheimer's home, then, should I separate those who still speak (my mother uses what I call "language lab English," which employs statements that begin with the first person pronoun) from those who do not? On the one side selves, and on the other what? Bodies that eat, that sit, that suck? But not persons?

Turn from this odd (but generationally appropriate argument--in 1992 deconstruction was still in circulation, still had its "I" about it) to Gary Mex Glazner's edited collection, Sparking Memories: The Alzheimer's Poetry Project Anthology, to find these questions posed differently. For Glazner's collection--of poems that many Alzheimer's patients remember from their childhood--is heavy on the lyric, the poem most associated with the "I." In the brief introduction, Glazner calls up the memory of a man to whom he recited Longfellow's "The Arrow and the Song." "When I said the line, 'I shot an arrow in the air,' he looked up and said 'where it lands I know not where.'" Glazner takes away the idea that "he was able to reach back to some part of his psyche that was not damaged by the disease" (12). But how is the "I" used, first in the poem, and then by the man with Alzheimer's? The "I" does not belong to Longfellow, but to his character. OK, so Longfellow's use of the "I" gives evidence of the poet's self. But the man who furnishes the second line? Is the "I" his own, that of the poem's mechanism, or both at once? And why should it matter?

I gave a talk at the Biography Center at UHM about my book shortly after it came out. I don't like to read talks, so I ad-libbed from a sketch and found myself comparing Alzheimer's to a neutron bomb, which destroyed life, but left buildings behind. Afterwords, an older woman approached to chide me for using that metaphor. "They are people," she said. And she was right. It does matter.

Jesse Ballenger's book is a well-researched and written history of the way our culture perceives dementia; by extension, he addresses our fears of old age, of dependency, of our inability to earn a middle class living, of everything anti-Emersonian. If self-reliance is an American desire (so rarely performed as intended), then the reliance on others brought about by Alzheimer's inspires terror in us. How can we depend? (And not on Depends, the ironic moniker for an elder diaper.) How can we imagine ourselves as our selves when we have forgotten what we know, the furnishings of our everyday lives? (That the furnishings in Alzheimer's units are relentlessly American middle-class only emphasizes the economic anxieties that Barrenger points out. Alzheimer's patients who are not middle-class are even more hidden from the world.)

Glazner's book is full of lyric selfhood, assertion, jars in Tennessee that organize the wilderness around them--even if the poems are all from the 19th century or earlier. "Shall I compare thee to a summer's day?" "How do I love thee?" These questions, while rhetorical, assert agency. The speaker can compare, can love, can use rhetoric to perform these actions. "My heart leaps up when I behold / A rainbow in the sky." "I remember. I remember." The verbs are active, the "I"'s coherent and in relation with others, whether with other selves or with rainbows or daffodils.

No one reads poems to residents of my mother's home, although those who are still able to visit the large common room often sing songs from old musicals or out of their patriotic childhood classrooms. My mother's memory was never superb, unlike my father's--he recited many lines of "Snowbound" quite frequently--but she had a Master's degree in Drama and Speech and loved to read Whitman's "O Captain, my Captain" out loud. She especially treasured the concluding lines to "Invictus," by William Ernest Henley (1849-1903). Once I was diagnosed with depression and unable to live up to them, I came to abhor the lines. In recent years, I have found them moving and sad in relation to my mother's life:

It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.

When my mother was badly hurt at a very young age, she promised herself that she would never again in her life be hurt that badly. She would master her family's chaotic life (alcohol, probable mental illness); she would captain her own soul away from the rocks. The last two lines, I need hardly note, begin with that indexical first person pronoun: "I am the master of my fate: / I am the captain of my soul." I and the. I am. I am my. When does this pronoun mark form and content, and when does content fall away, no matter how it's sounded? (Odd analogue at the right margin: drawing of a blonde woman in bikini with the seemingly hand-written tag, "Trick of a tiny belly.") And so self-reliance becomes a scheme to lose weight, fall away quite literally. Self magazine, anyone?

As I looked for the poem on-line, google informed me that Timothy McVeigh handed the poem entire to the prison warden just before he was executed; his last statement, then, was an extended quotation from "Invictus," rather than anything "in his own words." So that his "I"--one that asserted its absolute power--was borrowed from the speaker of a poem, just as my mother's "I" had been. While there are no other direct comparisons I can, or want, to make between McVeigh and my mother, they both came out of a tradition of stoic individualism (albeit expressed in a British poem). "In the fell clutch of circumstance," goes the second stanza's opening, "I have not winced nor cried aloud." What happens when the speaker can no longer wince, remember these words, utter the "I" and mean it as a marker of the self? When is control ethical? When is it demented, in the metaphorical sense?

Elsewhere in his final chapter, Barrenger quotes Kathleen Bredin and Tom Kitwood as they perform a turn on the question of dementia, suggesting that it is not they who are demented, but the we who are. Perhaps the poem, and the sentiment it puts forth, displays as much dementia as do the residents of the Alzheimer's home. "In some respects . . . we [the normal ones] might be considered more problematic than they [those suffering Alzheimer's]." And then, "What is more, it is arguable that the general pattern of everyday life, with its hypocrisy, competitiveness and pursuit of crass materialism is, from a human standpoint, deeply pathological . . . when the inter-personal field surrounding the beginnings of 'dementia' is looked at in this way, the problem is by no means focused on a single person whose brain is failing. Those others who have face-to-face contact are also involved; and in the background, so also is the prevailing pattern of social relations" (184).

Several posts back I found parallels between the language of the Alzheimer's patient and that of Modernism, in particular Gertrude Stein and Samuel Beckett. I do not mean to push these parallels in any way except as analogy, but I was struck, in reading Barrenger's review of memoirs by Alzheimer's sufferers (in the early stages) by this quotation from Cary Smith Henderson. "The one thing I know is the dog is with me and when the dog is with me I at least have some solace, even if I don't know the way" (180). "I am I because my little dog loves me," echoes Stein. No need for human care; any living response to an Alzheimer's patient affirms their living, their being, stands in for the personal pronoun, if it has been lost. For what is the "you" except a way in which we give another person an "I," a self?

As I return to this post, Ghana and Uraguay begin World Cup overtime. "Regular time" has ended and "overtime" begun; if overtime fails to find a winner, there will be penalty kicks, or "sudden death." Demented time is overtime without sudden death, is a game seemingly without goal. Our attitudes toward demented time reflect our fears of death and of a life not devoted to the "pursuit of happiness," but to sheer survival. The Alzheimer's patient is a survivor; many display courage in their daily lives. Their efforts to walk, and talk, make sense to others are brave. Even given "the culture of consumer capitalism, [in which] dying increasingly became another means of self-expression, if not self-indulgence" (147), there is expressiveness in their [in]terminable dying.

How appropriate, then, that Glazner's collection of poems contains so many about dying and about surviving death. They are poems of transcendence, not of the day to day. From Blake's "The Tyger" ("What immortal hand or eye / Could frame thy fearful symmetry?") to Shakespeare's Sonnet 18: ("So long as men can breathe or eyes can see, / So long lives this and this gives life to thee") to the perhaps more appropriate line from Milton ("They also serve who only stand and await"), these poems would have taught their students (now these patients) how to think about death.

A second overtime has begun between Ghana and Uruguay, after one minute of "stoppage time," time added on to replace the time that had been taken away.

A couple questions come to mind about Glazner's poetry collection. Those of us who grew up without learning to recite poems will remember what? Popular songs? If Bob Dylan can no longer remember his own lyrics, how will we? And what will be their mood about death? Will they celebrate our overcoming of it, or will they lament our passing without the gift of transcendence? How will these sounds, these intonations, affect the Alzheimer's sufferer of a decade or two hence? And what of people raised outside the English-American tradition that Glazner's book offers up? Will residents in Hawai`i remember "Hawai`i Pono I?" What other poems will have proven memorable to people raised and educated in this state or in others where literature has been stretched to include more cultures? It would be a valuable project to find which poems and songs could be used in Hawai`i's Alzheimer's units.

Uruguay has won their match against Ghana, which could have clinched the game at the end of overtime on a penalty kick. And so time ends; we have a winner, a loser, memories to carry with our selves into the time beyond overtime.

____________________

"I think there are some analogies between the experience of Alzheimer's and the Great Plains. There is vacantness of the plains and to this experience. It wasn't uncommon for the first settlers on the plains to get lost, not be able to find their way home." (Peter Beeson, quoted by Glazner, 115.) Beeson suffers Alzheimer's, and writes about it. While a captain has a ship, and a master controls his soul, the settler-wanderer on these plains is rudderless, leaderless. And yet I can't help but sense connections between these poles; the desire for control matching its loss in almost equal measure. This is poetry, I know, not fact. But poetry matters.

"The poetry of earth is never dead." John Keats

Illness & Insight: Nancy Gerber on Alzheimer's & Jill Bolte Taylor on Stroke

Until I read Nancy Gerber's chapbook-sized memoir of her mother's Alzheimer's yesterday, I hadn't thought through my own reasons for ending Dementia Blog at the point I first saw my mother settled into her Alzheimer's home. At the time I thought I would end the blog there because all else would become repetition--not poetic repetition, but dull repetition, like the repeated repetitions in this sentence. (Not insistence, Ms. Stein, just repetition.) But I thought again when I arrived at the last page of Nancy Gerber's My Mother's Keeper. Here is end of the final paragraph:

"When I am with my mother I feel completely alone. In a room filled with people--residents and staff--I am alone. I have entered the crawl space of Alzheimer's."

Her mother is safely in her home, if not at home. And so the narrative ends, not so much with the mother, but with a daughter whose sense of aloneness mimics--in some small way--the solitude of the Alzheimer's patient. (It's worth noting that all three books I'm writing about here, including my own, are about mothers and daughters at the point their roles reverse.)

So is it a mother's safety that causes us to close the page on her? Is it that admission into an Alzheimer's home is itself a marker of her self loss? So hard to write about someone who does not speak or interact or do much more than sit. Is it that without a "self" about whom to write (marked as dramatic, incapable, angry, confused) we stop writing? For Nancy Gerber, the last image of her mother that we have is one of her wearing clothes that had not been hers, but now belong to her because she wears them: "and then I remembered: laundry was done communally, and we had not sewn on nametapes as we'd been instructed. Those were not her clothes when she came in, but they were now." Or is it, less happily, that the Alzheimer's sufferer enters a space past poetry, past narrative, past art? (One student who read my Dementia Blog pronounced it too "aestheticizing" and I suspect this would be a tipping point for him. But for me, the aesthetic is so much a part of it, whatever "it" you mean--writing, losing language, imagining events and people, revising history away from fact and into fantasy, the "it" that remains when nothing else does.)

When I ended my first blog about my mother, it was out of relief that she had a place where she could not set fires or fail to eat or attack a caregiver. It was also out of a sense that I had nothing left to write. That last feeling has since proved false. If Alzheimer's is a long narrative, then it is one that continues well past its denouement; there are fewer moments of drama, fewer crises, fewer places where a writer might find meaning. It is a long farewell, like a film that cannot locate its own conclusion. But true to life, to death, it goes on.

I have continued to blog about my mother outside the book I wrote about her. But the blogging has moved from a direct focus on her, which anchored the book, to readings of documents about her and sketches about the other residents of her home, which appear occasionally on this blog. What moves me, keeps me from feeling the "crawl space of Alzheimer's" with which Gerber ends her story, is the work of the staff that cares for my mother and her peers. In the absence of much connection between her and me, one is found between me and her caregivers and her; we triangulate well. There is much to learn from the interactions of "normal" people with those whose lives are what Stevens called "of mere being," if "mere" is the word.

On a recent episode of Speaking of Faith with Krista Tippett, Dr. Alan Dienstag remarked that he is now less afraid of Alzheimer's than he was before he began treating Alzheimer's patients. While Americans fear this more than any other disease, he finds that his (advanced?) patients are not in pain, they are not anxious; it is their families who suffer. Where repetition may feel deadly to me when I visit my mother, repetition can be seen as a gift to her. She cannot remember that I sent flowers (though she's "sure they must have come"), but each time she sees a flower she smiles. I cannot say what her "now" is, but for her it lasts precisely because it does not stick to memory. The last time I visited I showed her on-line photographs of my in-laws' dogs. She smiled, engaged with the pictures more than she had with me for a couple of days.

In My Stroke of Insight, Jill Bolte Taylor has written more a book of practical Buddhism than of science. Her descriptions of what happens when you have a stroke are vivid, dramatic, doubtless of value to the scientific community. But the story that interests her more is that of losing her self and then revising it, of losing memory and then altering it. Or, more particularly, of maintaining an ability to lose herself anew. While I suspect that her divisions of self into left and right brains are simplistic in a scientific sense (what do I know?), she uses those divisions to map out a self perpetually working out differences between linear time, particularity, boundaries, ego, and work and time that is all present, in which particulars dissolve into universals, the ego gets put aside, and work doesn't get done. By the end of the book I was reminded of a college professor I had named Louis DuPre; he was a Belgian Catholic, a tiny man with little--but very spiffy--shoes. He would draw a line on the board to distinguish between our world and a transcendent one. Up was better than down. He would hector us by demanding to know why it was NOT a good thing to sit on an island and simply be. Between the shoes and the revaluing of time, I was hooked. Now I find him on-line. When asked to define the "spiritual" life, DuPre responds: "Such an attitude originates within the self; it is not derived from the force of inherited habits nor from people's tendency to yield to social pressure. To attain the religious life the believer must be alert to the inner voice."

For Taylor, that inner voice emerged out of the silence of her stroke. Her "left brain's" monkey mind stilled, she could sense a larger wholeness. She could sense this before she could again express it. Left brain now does the bidding of the right by taking notes on that recognition. Now I do not know which brain is left for an Alzheimer's patient, though I do recognize in my mother of a couple of years back the sense of there being a pleasurable "now," the now of flowers noticed over and again in the space of 20 minutes, or even the now that means she could not remember that we were there visiting her. Yes, this is something to fear; but no, it's not the worst that can happen. Those of us who remember become the stenographers of these moments of recognition. We, too, have our places in the Alzheimer's home. We are its visitors from the left brain.

I will be visiting my mother for several days at the end of this week and early the next. She had a bad fall several days ago, and we got the call at 2 a.m. (Hawai`i time . . .). But she recently failed to qualify for hospice care; her simple expression of disinterest in the outside world does not mean she's "actively dying." And so the story continues, or images that might be stories were they connected through histories linking her to her contemporaries, her to me, her to the world. Those flickers are also worth attending to. They may hint at a paradoxical wholeness amid the self's many losses.

[I found Nancy Gerber's book on the fine Alzheimer's poetry website run by Gary Glazner. I have not done it justice here, because it so provoked me into my own meditations, but it's well worth reading; the photographs are also quite moving, obliquely so.]