Suzanne W. Churchill

Selfhood

“It is because of visiting forces that we suffer”

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Sharon Salzberg, a meditation teacher who helped introduced Buddhist practices to the U.S. in the 1970s, offers this lesson from the Buddha in her “On Being” interview with Krista Tippett:

That was a very important image for me, out of the Buddha’s teaching, where he said the mind—your mind, my mind—is naturally radiant and pure. “The mind is shining.” “It is because of visiting forces that we suffer.”

The visiting forces that cause us to suffer are not inherent or intrinsic in us, Salzberg explains; they’re not who we are. When they come knocking at our door (and they will come knocking, sometimes very loudly), instead of trying to ignore them or shut them out, we can learn to open the door, invite them in for a meal, and have a conversation—always remembering they are visitors, not permanent residents.

sketch of a person's head with visitors approaching a house in the brain area.

This idea of welcoming the visiting forces struck a chord with me, because I have learned to think of my anxiety as a pesky little sister, who shows up at the worst possible times and demands my attention. I can’t get rid of her, and as annoying as she is, she makes me a better person. So instead of trying to ignore her or make her go away, I have to say, “Oh, of course you’re here, because this is something I care about, so hold my hand and let’s move through this together.”

Exam period ended this week, meaning it was time for me to start grading student work, an activity that always excites my needy little sister. On the evening after my first day of grading, I started to notice some negative voices knocking around in my head. They sounded too deep to be my little sister, so I decided to try Salzberg’s method, and address them as “visiting forces.” I pulled out a spiral notebook and began writing:

I am entertaining visitors telling me of my inadequacy and uselessness, my lack of skill and knowledge, my inconsequentiality as a teacher and scholar. Why are they visiting today? Let me ask them.

Why are you here? Is it because I’ve been grading and am disappointed in the quality of some of the work? Is it because I got angry and annoyed with a student who, once again, failed to submit assignments? Is it because I’m comparing myself to colleagues who sing the praises of their students’ work on social media? Why can’t I see my students’ work as just as marvelous? And why do flaws in their work reflect on me as a teacher? See how the questioning so quickly turns to my failings and inadequacies.

Dear Visitors:

Thank you for showing up for something I care about: the measure of my students’ learning and achievement. Thank you for reminding me to be humble, to accept less than perfection, in myself and them. Remind me how to evaluate the work, while still loving and appreciating the person who did it. I know you’ll be hanging around this week, casting shadows around the room. Here, have a cookie. You can stay, but please lower your voices. I have work to do.

Grading with Love: an open letter to my first-year writers

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I hate grading papers. This revulsion led me to innovate, so maybe misery is the real mother of invention. My thought process went like this:

Papers:
they hate writing them;
we hate reading them.
What’s wrong with this picture?

So I tried to change the picture. I turned to WordPress, a platform whose beauty and flexibility I hoped would make students more excited about writing, so that I could be more excited about grading.

It’s not a perfect fix, but with with practice, I’ve learned ways to use the platform to motivate students to take more interest in their writing. Your curation essays are a case in point: these are interesting essays because you are interested—not only in what you’re writing about but also in how you’re writing.

But I still hate grading. I can step into an essay and immediately get tripped up by tangled syntax, awkward grammar, and improper punctuation, so that I fail to see the idea straining for articulation.

I’m trying to change this process, too. I asked advice from Dr. Elizabeth Mills, a wise English professor who just retired from Davidson.

Me: “How do you approach grading essays? How do you keep from getting irritated and distracted by bungled grammar, clutter, and clichés?”

E. M.: “I try to see the person behind the essay. I try to think about what he or she is trying to accomplish and get across.”

As I turned that idea over in my mind, like a floury wad of dough between my hands, a realization began to rise: Dr. Mills grades with love.

When I read your curation essays, I tried to look for you and figure out what you were trying to say. Because if you have put something of yourself into an essay, there will be something to love in it. There will also be flaws, which are part of your humanness and your growing as a writer, and are therefore also something to love. Poet and playwright Kevin Kling tells a story about a cracked pot that reminds us why we should love the flaws. Listen:

 

drought-277453_640When I read your essays, I look for you. But when I attach the grade, I don’t grade you, I grade the essay, based on the extent to which it achieves the goals outlined in the assignment. You may not have achieved all those goals, but in attempting to meet them, I hope you have discovered something that more valuable than an A on an essay.

 

The Originality of Ideas and Other Scholarly Myths

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I’ve been sitting with Andrew Rikard (Davidson class of 2017) in a classroom all morning. We’re attending ILiAds (Institute for Liberal Arts Digital Scholarship) at Hamilton College to work on our digital Mina Loy project. We’ve spent most of the week attending presentations, exchanging ideas with other teams, and tinkering with our website.  This morning, we sequestered ourselves in order to write. We wanted to reflect on the collaborative process and on the ways in which digital tools can transform how we teach, learn, research, and communicate. We each decided to write our own blog posts.

Andrew put in his earbuds so that he could focus and not be distracted when I mutter aloud to myself, as I invariably do when I’m concentrating. But every so often, he’d pull out an earbud and ask me a question, wanting to talk through his argument to make sure it made sense. He would say something that would trigger an idea in my mind or echo something I’d been thinking about in another context. I’d listen, take notes on the white board, ask questions, and map out connections and parallels. Andrew was developing a brilliant argument about how digital domains (students designing and managing their own web presences) could transform pedagogical practices in ways that would allow students to have ownership not just of data, but also of the creative production of original ideas.

Here’s a example of our dialogue:

Andrew: I’m starting to think that a “domain of one’s own” is a misnomer, because it implies an ownership over ideas, which isn’t what we’re actually after. We want more of an emphasis on methods, research, exploration, and process.

Suzanne: That’s right, and the metaphors we’ve been using to describe domains emphasize walled, bounded repositories and individual ownership more than creative processes and collaborative exchanges.

Andrew: Yes, because “domain of one’s own” draws upon Virginia Woolf’s A Room of One’s Own, and she’s not really talking about the same thing. But how can I say that when I don’t know enough about her argument?

Suzanne: Woolf was referring to the way, historically, women have been denied access to the material spaces and economic privileges associated with the production of knowledge: they didn’t have access to libraries, offices, or to the quiet and solitude such spaces provided. It’s not that they didn’t have the intelligence or imagination to write, think, and produce knowledge, but they lacked the material resources to do so.

Andrew: Okay, so this situation is different. I want to emphasize that a “domain of one’s own” shouldn’t be an isolated space for individual contemplation, but a space of connectivity and creative exchange.

In this conversation, whose idea is it that the metaphors we use to describe intellectual property are bound by architectural models of walled spaces and by economic notions of individual ownership? Is it Andrew’s or mine? He was first to protest the limitation of the language, “domain of one’s own,” and if he didn’t say that, I wouldn’t have thought to extend his concern to a more general epistemological problem with how we conceive of originality and ownership of ideas.

Here’s the problem as I see it (after talking with Andrew):

share_ideaIdeas do not form in my head, and I don’t think they form in Andrew’s or yours either. They form in the space between us—in the synapses between two (or more) minds at work. Andrew was sitting across the table from me when I explained this idea, pointing to the empty space between our two laptops: that‘s where the ideas happen. Ideas occur not within but between minds. If you’re perceptive and alert, you’ll grab the idea as it spawns and put it in a book, article, or blog post. (If, as Virginia Woolf reminds us, you have the material resources to do so.) But the print or digital document you create is not so much your idea bank, as it is a point of contact between you and other minds. When you grab an idea and put it in writing, you’re putting that idea between two minds. It’s not in your head; it’s in a space between you and your reader(s).

Originality means newness and creativity; it’s tied to the notion of origin or source. But if the origin or source of ideas is the space between minds at work, how can we claim individual ownership of those ideas? Everything I’ve ever thought, said, or written has in some way been shaped by something someone else said or wrote. Even if I have a “new” idea about a Mina Loy poem—an idea no other scholar has published—I wouldn’t have thought of that idea if Loy hadn’t written the poem, and probably wouldn’t have thought of it if I hadn’t read what Roger Conover, Carolyn Burke, and Cristanne Miller, and a host of others have written about Loy, modernism, and women writers.

Academic scholarship, especially in the U.S., is obsessed with the idea of ownership and copyright. When I presented our digital Mina Loy project at a recent academic symposium, I was surprised by the level of fear and resistance. The concerns centered on questions of ownership: What if someone steals your ideas? If published online, will your work be protected by copyright? Those are legitimate concerns that I should think about, embedded as I am in an academic economy where status and value are premised upon the quantity and quality of scholarly publications. But what I really wanted to say was: How valuable are my ideas if they don’t exist where others can interact with them? Or if they appear only in a prestigious, expensive, hardcover book owned only by university libraries and a few scholars? And are they really my ideas in the first place? Or are they ours?

Of course, as Andrew points out, it’s easy for me to promote a collective ownership of ideas when I’m a tenured professor. As an undergraduate, he has a lot more to lose if he doesn’t lay claim to his ideas, or if I run off with ideas from our conversation and publish them without attribution to him.

The whole notion of attribution, so central to the scholarly enterprise, is premised on a notion of intellectual property. An original idea belongs to a particular thinker, so you must attribute it to him or her. Attribution is vital to the scholarly enterprise, but perhaps not because an individual originated or owns an idea, but because the apparatus of citation and attribution reminds us that we are all embedded in a network of ideas. We are always in conversation with the people who came before us, are with us now, and those who will come after us.

I’m all for documenting the conversation. What we write and publish is stronger when we acknowledge its ties to others, not when we claim sole ownership. I’m also hopeful that the digital humanities can broaden our understanding of original scholarship in ways that emphasize the collaborative origins of intellectual thought.

 

Momento Mori, or Motherless Me

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“All hope abandon, ye who enter here,” because you are proceeding through the gates of shameless, narcissistic navel gazing. My mommy has died, leaving me motherless, which seems like good justification for ruminating, even if there’s little reward in it for you, my hapless reader.

I spent the long weekend in Connecticut for Mom’s Memorial Service, which was lovely. I wish she could have been there to enjoy it! Friends and family gathered from as near as the choir loft to as far as the Philippines to celebrate her life. Her childhood friend Jean Kirkham and three of her grandsons offered reflections, coalescing into a harmonious eulogy in four parts. Jean embodied the Canadian-bred elocution, warmth, and grace in public speaking that Mom tried to pass along to all her children, grandchildren, and pupils. Her grandsons spoke with confidence, love, and humor, each exuding his  distinctive personality and reflecting different facets of hers. They began by introducing themselves: Alex, as “her second grandson”; Luke, a twin, as “one of her grandsons”; and Ben, the oldest and agent provocateur, as “her favorite grandson.” Despite Ben’s bravado, it was clear from their remarks that Nana had made each grandson feel like he was her favorite—like he had an especially close relationship to her that no one else could match and a place in her heart that no one else could occupy. Although she was always obsessed with being fair and equal, she somehow made each one feel like they were getting the lion’s share of her love.

A couple of times during the four-day stay at my sister’s house, I lost my temper, snapping at my nephews and brother-in-law, when I felt like their  teasing provocations were unjustified, insensitive, and, well, unbearable under the circumstances. Soon after, when the heat of the minor crisis had dissipated, I made my apologies, admitting that no one would ever accuse me of grace under pressure. No one came to my defense. Nobody took my side or quietly reassured me that I had been justified in my outburst.

That’s when I missed Mom most, of course. Because just as she did with her grandsons, Mom always made me feel like she understood and sympathized with me ABOVE ALL OTHERS. She verified MY feelings and took MY side. Or seemed to. No doubt she was making my siblings feel like she was on their side, too. But no matter. She made me feel like I was her favorite. Now, motherless, I feel bereft. I’m no longer anybody’s favorite.

This feeling is maudlin and self-indulgent, fueled by false consolations and nostalgic distortions. But my Mom just died, okay? So permit me a few indulgences. I’ll get over it eventually.

Already, even as I feel sorry for myself and miss that kind of love that probably only a mother can provide, I also am starting to think: hey, wait, maybe I don’t need to be anyone’s favorite! Maybe I can grow up just a little bit and stop needing to have all my feelings and outbursts justified! Maybe I can start to think, act, and behave based on my own sense of right and wrong, which you’d think would be sufficiently developed after almost a half century!

Ok, probably not a profound realization to you, but a giddily liberating one for me. Which leads me to my hairdresser Chip (a font of wit, wisdom, and fashion advice), who told me that, after the trauma of losing your parents, you may find it’s actually liberating. People don’t want to admit it because it seems so heartless. But you no longer have these authority figures in your life, reminding you of a heritage you must uphold and a set of expectations you must fulfill. You’re free to be whoever you want to be.

This was not actually true for my Mom, who loved her parents with such devotion that she never, ever stopped trying to live up to their standards. They are the main protagonists of the memoir she wrote at age 70, and their deaths still ravaged her, sixteen years later:

The most sad and traumatic times in my life came with the deaths of my parents – my father on his 78th birthday, June 14, 1989, and my mother at the age of 81 on March 22nd, 1992. Nothing that happened before could have prepared me for the pain and emptiness I felt with their loss. It hovered around me for months, the shock and despair attacking suddenly and fiercely at unexpected times and in unexpected places. It sometimes still does that, especially in church where singing their favorite hymns is guaranteed to bring tears.

Mom kept singing her parents’ favorite hymns, carrying on their traditions, even sitting in the furniture they passed on to her, right up until the end.

Familyof3-600x600

There’s a lot of my Mom that I want to carry on—her fierce love of her family, her empathy and curiosity about what makes people tick, her love of reading and dachshunds, her ready laughter. But there are things I want to let go of too—an anxious need for approval, a desperate compulsion to be good, and crises of panicked indecision. “We are always changing” is a truth I’ve tried to embrace in the course of Mom’s Alzheimer’s, more than once. Alzheimer’s changed her, and it changed me, too. Her death has also changed me, in ways I don’t yet fully understand. I’m still learning how to let her go. Maybe the next thing to let go is the need to be justified.

Of Mere Being

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I’ve just returned from a much anticipated, much dreaded three-day sojourn in Connecticut, where I saw Mom for the first time in her new living quarters, an extended care facility called Arden Courts. My family had given me a pretty clear picture of what to expect, but they couldn’t prepare me for the emotional wallop of seeing her, dozing in the common room, wheelchair-bound, listing to the side, head tilted back, arms stiff, legs atrophied, feet puffy in her unused shoes. She rouses when prodded, but mostly stares off in the distance. When she looks at you, her brown eyes seem glazed, as if milk has been added to the coffee she always preferred black and hot.

In past visits, I  found it challenging and even amusing to analyze Mom’s speech as if it were modernist poetry, with its odd juxtapositions and parataxis. I got satisfaction from trying to piece together the associative logic of whatever constellation of phrases she managed to utter. What my poetry reading training didn’t help me with, however, was her performance of the poems. When she strained and grunted to get words out, it was so excruciating that my intellect and imagination failed, and I was wrecked by a complex of grief (desire to hold on) and desire to flee.

IMG_5516But now Mom scarcely speaks at all, and when she does, she is barely audible. There is no longer any trace of associative logic. Just flutterings of weightless words, like dust bunnies that hop away when you try to sweep them into a dustpan. Language eludes her going in as well as coming out: she got no pleasure from listening to me read Jane Austen aloud. She seems remote and distant, like a cuckoo tucked away in an elaborately carved wooden clock. She chirped up when I talked about her grandsons, Luke, Thomas, and Zac, and she sang along to a couple of children’s songs that she used to sing to them at bedtime, “Jack Was Ev’ry Inch a Sailor” and “Edelweiss.” She couldn’t get out all the words, but her sweet, pure voice came through here and there, marred only by my quavering pitch.

Although she said little, she knew who I was. When I told her I loved her on the first day, she replied, “I love you, too, Suze.” On the second day, she didn’t seem to recognize me, but on the third, when I said, “Do you know who I am?” She said, “Of course I do.” “Who am I?” “You’re Suzanne Churchill.” When I cried (admittedly often), she smiled more, as if trying to cheer me up. Her strongest sentence, the one she can articulate most clearly and at appropriate times, is: “I love you very much.” One could do worse for famous last words.

It was hard to see her so altered, hard to realize that her caregivers would never know her as she had been—a lover of books and music; intellectually curious, meticulously dressed, and sociable; an ardent wife, devoted mother, loyal friend, anxious perfectionist.

Mark Olsen and Will Scheffer, creators of the HBO series “Getting On,” talk about these hard losses in an interview with Terry Gross on NPR’s Fresh Air. The show (which I haven’t seen but want to) is set in a women’s extended geriatric care facility, and the writers draw upon their own experiences caring for their aging mothers. Olsen’s description of his grieving process struck a chord:

I had that poetic little moment that was quite narcissistic that, oh my God, there will come a day when she says I love you for the very last time. And that was sort of my self-involvement with it initially.

But over the course of those years, I certainly learned that – that day did come, certainly, but the relationship did not die in any way, shape or form. It continued and progressed and had great value. … but when my mother finally lost the capacity to speak – because she was a very articulate woman, a very verbal woman with a very storied past – when she lost that ability to speak, and she was left with caretakers, it saddened me tremendously.

And it didn’t matter who the caretaker was, good caretaker, bad caretaker. It didn’t matter – that they would never know who this woman was.

That’s the bald reality of dementia: so much just doesn’t matter anymore. Even if her caretakers could know who she was, she wouldn’t know the difference.

You’d think losing language would make it harder to be with Mom, but strangely, I found it easier. My plan had been to visit twice a day, stopping in for a few minutes on my way to do research at the Beinecke Library and again at the end of the day. I thought short visits would be better—and probably all I could bear.

But now that she can barely speak, the only thing I can do is be with her, sitting beside her repeating stories about my life and hers, holding her hand, wheeling her around the halls and courtyard, and breathing with her when she gets agitated. An hour passed yet I had no desire to leave.

I didn’t understand my strange sense of quietude until I heard Will Scheffer’s explanation on Fresh Air:

I think what caring for our mothers really taught us, all the way up through the hospice experience was…that this part of life… that so many people are afraid of, and for good reason, it’s kind of a privilege to be able to be there when you can.

…that act of carrying on conversations with someone who can’t speak to you and being with them as they’re dying, there was a kind of sense of privilege that we began to feel and sort of a sense that gosh, you know, I was so afraid of this, I didn’t want to do it. I didn’t want to be here.

But being here is starting to feel like a good thing, a good part of life, something that we avoid in this culture but that actually is a rich experience, albeit painful. It actually is so much a part of life. And so many people never get to be in it.

I didn’t want to be here either. None of us did. I only get to be in it with Mom for a a handful of visits, a few times a year, so it is a privilege—”a rich experience, albeit painful”—to be with her as she withdraws, as her brain shrinks and the channels widen between its folds. As she diminishes into a state of mere being, all I can do is be with her—just be. That’s what my yoga teacher, Amy Schneider, invites us to do; she asks us to set aside our thoughts and feel “how good it feels to just be.” It’s a kind of meditative state, this mere being, one that makes me wonder what it feels like to be Mom, as she reaches the end of cognition and finds herself on the outskirts of language.

Wallace Stevens tried to imagine this state in his late poem, “Of Mere Being”:

Of Mere Being

The palm at the end of the mind,
Beyond the last thought, rises
In the bronze distance.

A gold-feathered bird
Sings in the palm, without human meaning,
Without human feeling, a foreign song.

You know then that it is not the reason
That makes us happy or unhappy.
The bird sings. Its feathers shine.

The palm stands on the edge of space.
The wind moves slowly in the branches.
The bird’s fire-fangled feathers dangle down.

~Wallace Stevens, 1954~

PiB_PET_Images_AD
PET scan of a brain with Alzheimer’s.

Stevens combines gleaming imagery and gorgeous alliteration to transport us beyond reason and emotion into a realm of pure sight and sound. I try to imagine what it’s like in Mom’s mind—”at the end of her mind,/ beyond the last thought.” She is moving to a state “without human meaning, / Without human feeling,” and it’s a “foreign song,” one I don’t understand and can’t sing. But there is a kind of grandeur to the utter, defiant loneliness of “mere being,” a primal beauty in the isolate calm. When Mom stares out into the distance, maybe she is seeing “fire-fangled feathers dangle down.” Or maybe she sees nothing at all. In any case, it is good to just be with her.

 

Women and Self-Fashioning in Moscow

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Amanda had warned us that women in Russia tend to dress up and dress fashionably. When we first got to Moscow, I didn’t notice the difference, because I was distracted by the wide variety of fashion, ranging from elegant dresses to jeans and even shorts. I couldn’t detect any dress code. But the more I people-watched, the more I was struck by the care and attention the women devoted to fashion and grooming.

The high standards were most clear at MGIMO university where the halls and classrooms were filled with young men and women. While the young men dressed well, the women were positively stunning, many wearing what I would call party dresses. Their makeup was exquisite. Most popular was the carefully lined “cat’s eye,” with the upturned curve at the outer corner of the upper lid, extending the lashes and widening the eyes. Shoes ranged from dainty ballet flats to strapping stilettos.

Back on the streets and metro of downtown Moscow, I realized that nearly every woman I saw, no matter how casually or formally dressed, appeared to have devoted a great deal of time and attention to her clothing, make-up, and hair.

Among women, grey hair is almost non-existent. Shelley and I have both had women who weren’t much younger than we are give us their seats on the metro. Call it vanity, but I could only conclude that they thought we were much older because of our grey hair. When I told Kristi my theory, she thought I said that they gave us their seats “because we have great hair.”  The look of perplexity on her face lasted only until we both dissolved in laughter. Later, when Shelley and Kristi both scored a seat on the metro, I told them they had great hair.

But I digress… Back to the Moscow women, who have great (not grey) hair… Whether the look is catwalk, corporate, goth, or gamine, it is decidedly feminine.  Like grey hair, androgyny has no place in Moscow.

Women seem to have plenty of freedom: they walk on the streets, in the metros, and through the halls of the university. They wear high heels, low heels, and sneakers. They bare cleavage and curves, or cover up. They travel alone and in pairs, with and without men and children (but mostly without). But despite their freedom of movement and wide range of stylistic choices, I can’t help feeling like the standards of femininity are limiting.

imageThis sneaking suspicion surfaced today during our tour of the Tretyakov State Gallery of Russian art. We looked at art spanning the 12th through the 19th century. Every work our guide directed our attention to was painted by a man. When at last we entered the early 20th century wing, just as we were leaving a room, Amanda pointed out a painting that was done by a women. It was a self-portrait by Z. Serebryakova, entitled “At the Dressing Table” (1909). The painting seemed surprisingly bold and modern, yet also distinctly feminine.  Was it celebratory or ironic? Her expression is coy; the hairpins are preposterously oversized. I don’t know enough about Serebryakova (our guide didn’t mention her), or about Russian women, to come to any  conclusion.

Speak to me : Take my hand : What are you now?

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1532116_10202895045715800_602969367_nWhen I FaceTimed with my mom on January 5th—her 75th birthday—she was surprisingly “good.” I put that word in quotations marks because I’m uncomfortable with the moral judgment it seems to place on the natural course of her disease. Yet that’s the word that come to mind, and she was really, pretty good: she knew it was her birthday, she said she was 75, and she asked me (un-prompted), “What’s Matt doing?” The question meant that she not only knew who I was, but also remembered who I was married to. Conversation seemed pleasurable but tiring: by the time I summoned the kids to the screen to wish her a “Happy birthday,” she resorted to echolalia, wishing them “Happy Birthday” back, even though it wasn’t their birthday. She was cheerful and smiley. She seemed to be enjoying herself and the attention, not to mention the chocolate cake.

1557651_10202895045755801_1173266732_nIn our Face-Time encounter today, two weeks later, things weren’t so good. My sister reported last week that Mom had started exhibiting a strange symptom of straining to get words out, as if she had to wrench them out of her throat. I didn’t need to hear the guttural straining to know what my sister meant. I saw an early stage of the symptom in an expression that began appearing on Mom’s face last summer. A shadow would rise up on her face, lifting her eyebrows and wrinkling her forehead in a paralyzed anguish (you can see it happening in the photo on the left). “What does that expression on your face mean, Mom?” I asked, describing and mimicking it for her. She said she knew her face was doing that, but didn’t seem to know why. It was as her face was expressing things that her brain could no longer comprehend or control. Was it anxiety? Pain? Or just a neurological reflex?

Now the facial expression coordinates with speech, or rather, with the anguished effort to produce speech. She strains as if she has tear the words out of her body. Often words won’t come, or when they do, they stop mid-sentence. If you question her about the end of her sentence, or try to suggest a destination, she’s already forgotten it. In these moments, the effort to make conversation is futile, no matter how much we both want it to happen.

Our fragmented conversation reminds me of a fragmented scene in T. S. Eliot’s, The Waste Land, in which two lovers are bound in a fraught, intimate exchange. The first speaker desperately pleads for conversation, and the other lover refuses:

“Speak to me. Why do you never speak. Speak.
  “What are you thinking of? What thinking? What?
“I never know what you are thinking. Think.”
  I think we are in rats’ alley
Where the dead men lost their bones.

When I tried to talk to my Mom today, I felt as if I was silently urging her, “Speak to me. Speak. Speak.” It seemed as if her own mind was urging the same thing, pressing her to “Speak” and “Think.” And her own mind—or some other part of it—was as recalcitrant in refusing to cooperate as the lover in Eliot’s poem. Her mind had become a rat’s alley, and no matter how much she pressed it to speak, it would not give.

But maybe it’s not so bad for her. Psychologist Alan Dienstag, who conducts support groups for early Alzheimer’s patients, offers a reassuring perspective on the disease. Although Alzheimer’s is the disease Americans fear most, he says, it’s actually not the worst way to go, at least not for the patient. He tells this story about a workshop he ran:

There were about 20 people in the room and we were…going around the circle and people with early Alzheimer’s were talking about their lives and what they do to…give their lives meaning, find stimulating things to do, and so on. This man started talking about his experience as somebody with early Alzheimer’s, and he was painting a very…benign picture of it all. He said, “Well, you know, it’s difficult not to be able to remember, but I get up and I can do this and I can do that.” Basically he was just saying he’s fine, he’s OK. And over his shoulder, sitting behind him, was his wife. And she was crying…And I knew just how much he’d lost, how much she had lost.

 

…But there he was. He wasn’t uncomfortable. He really wasn’t. And so I think we project our feelings onto them, and we assume that they are suffering some terrible thing, but in fact that’s not necessarily the experience of it.

Listening to Dr. Dienstag’s interview helped me accept my Mom’s diagnosis: it was comforting to think that she wouldn’t suffer great pain—that for her, the worst was over. But now I’m not so sure. As I watch her on the screen, straining to extricate words, the effort appears agonizing. Maybe it isn’t physical pain. Maybe it’s emotional. Whatever it is, I can’t stand to see that look on her face and hear the words torn from her throat and shredded in the process. I feel like I’m not just witnessing pain, but actually inflicting it. By asking her questions and telling her about our lives, I’m putting her in a situation where she is compelled to speak, but cannot.

Our relationship has always been based on talking. Mom started reading aloud to my older sister and me well before I could understand the words. We spent the hot, humid summer days sitting in the living room in front of the fan as she read and read. When I was older, she would drive me places and tell stories about people’s lives and relationships—about marriage break ups, nervous breakdowns, jealousies and rivalries I was too young to understand but still fascinated by. I would ask questions, and she would always answer. Conversation became the fabric of our relationship.

So when she sees me, she knows, instinctively, that conversation should happen. And she can no longer make it happen. I can chatter on to fill the silence, but I’m not alleviating the pain that comes from the absence of reciprocation. Whose pain is it? Am I projecting my pain onto her, assuming she is “suffering some terrible thing,” as Dr. Dienstag says, when her experience is different? Her expression tells me I’m not projecting pain, though I’m probably mirroring it.

A few months ago, seeing her face on the screen gave me a sense of emotional connection, even when words faltered. But today, the effort of speech is too painful. I want to shut down the screen, to sit next to her and hold her hand, so that she won’t see me and feel like she has to speak.

Thinking about the effort of speech made me think of Muriel Rukeyser’s poem, “The Effort at Speech Between Two People.”  So I looked it up, and in one of those uncanny acts of grace, the poem handed me the very guidance I was looking for. Its recurrent refrain is:

:  Speak to me.          Take my hand.            What are you now?

In juxtaposing these phrases, the poem suggests that speaking to someone is analogous to taking that person’s hand. Both are reciprocal gestures of contact and communication. The poem also delivers a lesson I thought I’d already learned: we are always changing in relation to one another. So as my Mom and I continue to change (she on a more rapid course than I), I’m going to have to let go of speech and take her hand. That gesture may be my only answer to the question, “What are you now?” For now, anyway.

Are You My Mother?

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IMG_1612This photo was taken in October 2013, the last time I saw my mother. She looks just like herself, doesn’t she? That’s because I had just washed and styled her hair for her. (Although Dad had been reminding her to take showers, I’m not sure if or with what she’d been washing her hair.) I also picked out her outfit and helped her put it on in the right order. (She’d put on the wool cardigan without a blouse under it.)

I look like myself, too, if a bit red-nosed and puffy eyed. You see, I’d been crying. We’d just taken Mom on a tour of the assisted living wing, “The Hearth,” where she would be moving next week. I had willed myself to be strong and cheerful, but as soon as I walked through the door the tears brimmed up and over and would not stop. I wasn’t upset by my immediate surroundings. Rather, I was crying backwards, for my godmother Millie who died of Alzheimer’s in 2007, and forward, for my mother, whose Alzheimer’s guaranteed her the same fate.

The last time I visited Millie, she was in the assisted living wing of Whitney Center, sitting vacantly in a wheelchair. I had expected that she wouldn’t recognize me, but I thought she would still greet me with a jaunty, “Oh, hello!” Instead, she was utterly absent. Here, physically, was Millie. Yet she was gone.

At the time of this photo, Mom wasn’t gone yet. She still had her sweet, cheerful, anxiously do-gooding personality. She still recognized me. Speaking coherent sentences was difficult, as was comprehending anything but simple, concrete sentences. But she could still apprehend and communicate feelings: though her facts were often wrong, the emotions were true. Given how disoriented she was in time and space, however, I wasn’t sure she understood that she’d be moving to the Hearth—permanently and without Dad. But she knew that something was up, and she had mixed feelings about it. “I just want to make sure I can leave if I don’t like it,” she said in a jarring moment of clarity. “You’ll like it, Mom,” I replied evasively, more hopeful than confident, “You won’t be lonely here, and you and Dad can enjoy each other’s company again, without so much stress.”

Entering the Hearth with Mom felt like the first step in letting her go. Now, two months later, I feel like I’ve lost her because her new home has terrible cell phone reception and no WiFi. Cell phone service no longer matters: we’re past the point where we can communicate meaningfully by phone. But sitting face to face via Skype, I feel like I can still connect with Mom. No matter how garbled the words, we can still see each other’s expressions, gestures, and emotions. This will change, of course. The last time I Skyped with her, Mom told me I looked different. Meaning: I don’t look familiar to her. Meaning: soon she won’t recognize me.

“Gone” is the language we use to describe the effects of Alzheimer’s. After a bad patch, when Mom didn’t recognize Dad—thought he was the gardener, though we never had a gardener—he cried and said, “she’s really gone.” Then, on an another day, “she was almost like herself again.” But the following day, she chose to stay and finish watching a movie with her new companions, rather than joining him for their ritual glass of sherry. Was she turning down an invitation from her husband of 50 years, or from a strange man who, in that moment, she did not recognize? And if she didn’t recognize him, was it Mom who turned down the invitation, or someone else? Was Mom “gone” again? Will she reappear? When will she resurface for the last time?

These unanswerable questions suggest the inadequacy of our language, both for dealing with Alzheimer’s and for embracing the complexity of selfhood. Alzheimer’s is a disease that, in attacking the brain rather than the body, destroys what we think of as the essence of the self. How much of ourselves resides in memories of our life experiences and in our ability to recognize the people we love? If I can’t remember my life, my lover, or even my own name, am I still myself? If I’m “gone,” but my body still breathes, eats, and sleeps, who has that body become?

This fear of losing the self rests on a false understanding of selfhood as something bounded and constant, rather than permeable and changing. David Hilfiker, who writes a blog reflecting on his own Alzheimer’s, draws attention to this common misunderstanding of selfhood in Western culture:

Buddhist teachings remind us that there is no constant “self.”  (See my “Letting Go of Self.”)  The Western idea that our self stays the same throughout our life just isn’t very accurate.  In fact, our self changes continuously and dramatically throughout our life.  The Buddhist teachings point out that clinging to any particular self-image is sure to bring suffering because the self will not fit the desired image forever.  Let it go!

We change throughout our lives, in mind and body. Twenty years ago, I was not a mother or a professor, now I am both, and someday I will stop being a professor, but keep being a mother. My fear of heights has gotten worse, and my fear of embarrassing myself has lessened, though I’ve had plenty of practice with both. And I used to love chocolate, but hate wine and coffee; now, fortunately, I love them all. Have I mentioned my grey hair?

We are always changing, and Alzheimer’s accelerates the rate of change, rendering it more palpable and volatile. Other degenerative diseases have similar effects, diminishing the capacity of the body rather than of the mind. When a person with ALS wakes up one day and can’t move his arms or legs, we don’t say, “he’s gone.” So when my Mom wakes up one day and can’t recognize me, I won’t say, “she’s gone.”  I will know she’s changed, and so have I.

But the immeasurable ways in which we have changed each other—molded each other’s selves through the impressions (including the bumps and bruises) we’ve left upon each other along the way—cannot be undone. I like to think that, even when she can no longer recognize me, Mom is still carrying me with her, if only in her muscle memory. And I’ll carry her with me for as for as long as I can remember her and as long as my heart beats.