Tuesday, May 25, 2010

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.]


Redheaded Stepchild said...

I stumbled on this via facebook and am very grateful. My mom has late stages Alzheimer's and my dad is her primary caregiver at home. My chapbook of poems "Lessons in Forgetting" was just published. I connected so deeply with what you wrote here: "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." I look forward to reading "Dementia Blog".
Best, Malaika

Ua Dear said...

I found out about Jill Bolte Taylor in one of my art classes last semester. she did an TED talk 2 years that i thought was amazing. http://www.ted.com/talks/lang/eng/jill_bolte_taylor_s_powerful_stroke_of_insight.html

-ua :)

bobbi said...

Susan, Anny Ballardini told me about your blog and I thank her for that. I wish I had met you and your blog when our experiences were more simultaneously. That would surely help, I am certain. I wrote a long reply to your post earlier but I guess it didn't post because I went back to check it and it is not there and what I will write now I fear will be much less significant since I am so tired. What I will say is: I never felt there was an end to Alzheimer's. I have published 3 poetry collections, they are the only books I have published, and all of them contain parts of my mother's descent into Alzheimer's. Unfortunately, I am unable to read your post as I write this. My memory is poor and I worry about that at times though I am under great stress now so I'll leave it at that and I guess I won't cross that bridge when I come to it---someone else will have to though I don't have a daughter and daughters seem to do these things. I never felt an end to the process of Alzheimer's. Even after my mother's death, I held on. I think that was my loneliest time. No one cared about my mother during the entire disease. She became a non-person to them though never to me. No one called. No one visited. But at the funeral everyone but me remembered her as a 40 year old woman. After 5 years, I still can't gather up a single memory from childhood or after. I only remember the illness. Unlike you, I never felt Alzheimer's was a lonely disease. My mother was a loner in her life but during Alzheimer's, while she was still speaking at least, she created, not only close friendships with the other "inmates" (as I started calling them) but an alternative universe, one which made her happier than she had been during her unhappy life. After she had been unable to speak for years I remember her blurting out spontaneously one day, quite shockingly for me, "I'm still myself"--this struck me so deeply. I believed her and ever since I wonder about what this self is.
I dare not read what you wrote about the book about strokes. This runs in my family. I was hospitalized two weeks ago for a fairly serious T.I.A. I am too young for this, I feel, but, as a cancer patient, the risk of this rises so...I am just filled with superstition. I look forward to reading your blog and writing more responses to you. I need more of a clear head to respond appropriately. I do ask what it is that makes us human. I hope your visits with your mother turn out well. You can write me at the email address listed if you like though I fear this message not going through as well as the first one I sent. I am a neophyte with the computer so I lack confidence in everything I do on the computer. I hope this works. best, bobbi

susan said...

thanks for writing, bobbi. I just arrived in Virginia after the long trip from Hawaii, so more soon. Hang in there. aloha, Susan

Anonymous said...

Hi Susan--I really loved reading your posts on your mother's Alzheimer's. They are both interesting and moving. On another note, I am currently writing about Charles Bernstein and am finding your essay about Bernstein, gender, and clothing very helpful. You seem to be the only person to have written on Bernstein and gender. Is that true? Take care, Kimberly Lamm

susan said...

Kimberly--it's been a while! But I suspect that Bernstein and gender is a wide open space. I see you wrote something on Lewis & Clark. Just saw them neck high in the Big Muddy . . . thanks for reading. aloha, Susan