Though Much Is Taken, Much Abides: Fifteen Years of Literature & Medicine

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Teaching Tennyson’s poem “Ulysses” in my Mythology and Literature class last week, I was struck by a phrase I’d never paid much attention to before: “Though much is taken, much abides.” The new resonance of those six words derived from many sources. Two sources that come to mind are the long and now perhaps tapering Covid pandemic and the landscape, both diminished and enhanced, it may be leaving behind; and also the recent death of my teacher and mentor Edmund Keeley, who always thought of life as a voyage with, one hoped, faithful companions. Indeed, I wondered, what didn’t that seemingly simple phrase apply to?

The application I want to explore now is the other course I’m teaching this spring, a course called Literature and Medicine. Or maybe I should call it a variant of Literature and Medicine, for the course I’ve been teaching since about 2007 has changed over the years. Parts have fallen away, parts have been added, something stays the same. Tracking the evolution of the course is a way to remember how all these alterations happened. “Evolution” is the wrong word if it implies that the course has been developing from a simple organism into something more complex; that’s not necessarily the case. Still, though its name remains the same, Literature and Medicine has undeniably changed—as has the culture of academia; as has the technology associated with teaching; as have the students; as have I.

How did it begin? Early in 2005, my husband George, then sixty-one years old, was diagnosed with a fairly advanced dementia. In the next couple of years, starting from zero, I learned a lot about neurodegenerative diseases—not only Alzheimer’s but frontotemporal dementia, a new term for me.  I learned about the world of caregiving and about support groups, in particular a group run by an organization called Well Spouse. I read books I wouldn’t have read before—What If It’s Not Alzheimer’s? and Ambiguous Loss are only two of many. And I read poems that I’d read many times before, except that now many of them had different and darker meanings.

It was crucial during these lonely early years of George’s illness that I kept teaching—many of my social interactions took place at work. But the courses I was teaching then, courses in children’s literature or American poetry or the Romantic poets (the English Department at Rutgers-Newark, where I teach, had lost its Romanticist, and I had the luck to take his place for a semester), had nothing to do with the other, and increasingly absorbing, track of my life.

As George’s illness worsened and took up more and more of my attention, my daily experiences as a caregiver and the learning curves I found myself negotiating began to resemble a course I was taking. In 2006 I attended my first-ever medical conference, on frontotemporal dementia. That same year, at a Well Spouse conference, in a session run by Dr. Barry Jacobs, a family therapist,

where we were encouraged to write down some of our memories of caregiving, I produced a sketch which became an early chapter in a memoir I completed some four years later. I’d never stopped writing poetry, but this was a different kind of writing. Strange Relation: A Memoir of Marriage, Dementia, and Poetry was published in 2011.

Another conference, one I attended twice, was The Examined Life, devoted to medical humanities  and initially sponsored by the University of Iowa Medical School in conjunction with the University of Iowa Writing Program. Reading, writing, going to conferences, running a support group—it was natural that my life as a well spouse, or a caregiver, or whatever term one chooses, should eventually spill over into the classroom. For a few weeks in 2007, supported by the New Jersey Council on the Humanities, I taught a seminar at UMDNJ (the University of Medicine and Dentistry of New Jersey) in Newark, attended by doctors, nurses, medical schools, janitorial staff—whoever was interested.  My rather vague memory is that we read a few poems and that we wrote. It was the following semester that I began teaching Literature and Medicine at Rutgers-Newark.

What did the students read, in those early years of the course? Often, canonical works like The Death of Ivan Ilyich or Ethan Frome or Virginia Woolf’s essay “On Being Ill.” Woolf’s essay had recently been reissued by Paris Press in an elegant little volume together with an essay by Woolf’s mother, Julia Stephen, “Notes from Sick Rooms,” with an introduction by Dr. Rita Charon of Columbia University, a pioneer in narrative medicine. Once or twice, we read Camus’s The Plague. Once, Plath’s The Bell Jar. Often, poems, many of them from the time of the AIDS epidemic, such as Thom Gunn’s powerful sequence in his 1992 collection The Man with Night Sweats. other poems I chose from Unending Dialogue: Voices from an AIDS Poetry Workshop, an anthology I had edited in 1992-3 when I was running a workshop at Manhattan’s Gay Men’s Health Crisis.

From early on, I invited guest lecturers to speak to the students. Some of these were people I’d met at The Examined Life: Dr. Paul Gross, who created and edits the online weekly Pulse: Voices from the Heart of Medicine; and Celia and Bernard Bandman, who created and run a nonprofit, Speak Sooner, about negotiating difficult medical conversations. Ann Burack-Weiss, a social worker who, like me, had volunteered at GMHC in the late Eighties, came to speak to us about aging and dementia; and Joseph Cady, whom I had met when we were both fellows at the Cullman Center at the New York Public Library, lectured on The Plague and talked about the concept of the wounded healer.

Writing was also a crucial part of the course. Party influenced by my Rutgers colleague Bruce Franklin’s practice, I always assigned a medical memoir as the final project; the students worked on their memoirs for much of the semester. These memoirs often fed into the personal statements students were writing for their medical or dental school applications. I hadn’t planned this conjunction; it was a benign unintended consequence.

After a few years, former students in the course who were now medical students came back to visit the current class and to talk about their medical memoirs. I remember a Nigerian student whose sports injury had hobbled him for a year but had also kindled his interest in the human body; I remember an Egyptian student, also an athlete, whose successive surgeries had only increased his determination. One student wrote an eloquent memoir about her struggle to find diagnosis and treatment for what turned out to be Ehlers-Danlos Syndrome. She wasn’t headed to medical school, but the fact that her memoir was published in Pulse proved helpful in her career as a software engineer.

As the course became more and more popular—sometimes up to eighty students enrolled—it got harder for me to supervise all those medical memoirs. During the later years of George’s illness, from 2008-2011, I’d begun hiring MA or MFA students as assistants, understudies in case I was called to some emergency.

George died in 2011. Among the many larger changes his death brought about, the way I ran the course shifted a little: graduate assistants, still invaluable, rather than taking my place in the classroom now helped students with their writing. Sometime around 2014, the course was reclassified as a writing -intensive course which also fulfilled a general education requirement. Writing-intensive courses at Rutgers-Newark cap at twenty-five students, so each semester I had to turn people away, but the quality of the students’ experience improved.

Occasionally I taught Literature and Medicine at the graduate level, for a mix of MA and MFA students. In this version of the course, we did more reading and thought more about theory. My New Brunswick colleague Ann Jurecic visited the class to talk about her thoughtful book Illness as Narrative, which tracks, among many other topics, both the explosive expansion of medical memoirs during the AIDS epidemic and the uneasy fit of literary theory—what Jurecic terms “the hermeneutics of suspicion”—with this new genre. In the graduate course, the memoirs the students wrote were often long and eloquent.  Eliza Minot, an MFA fiction student, wrote an account of her four experiences of giving birth— remarkably, in the second person. Her memoir later won an award. Another student wrote about his experience falling from a lawnmower, which crushed his ankle. The scene as I recall it was harrowing but also pastoral and meditative, as he lay in a meadow hoping help would arrive.

“Don’t all these tales of suffering depress you?” asked my husband Shalom a few years ago. Oddly, they don’t—any more than working on poems with men suffering from AIDS had depressed me back in 1989 and 1990. All those men were to die within a year or two of our workshop, but their poems still speak loud and clear. My Rutgers students, on the other hand, were and magically remain young and hopeful, year after year. I’d say they’re also healthy—but reading fifteen years’ worth of medical memoirs by twenty-year-olds has revealed a range of ailments and accidents that doesn’t appear on the surface. It also reveals a lot of strengths: intense and nourishing family ties; determination; courage. All these qualities would serve my students well during the years of the pandemic.

By about 2016, the Literature and Medicine course, in its undergraduate version, stressed writing as much as reading. We still read The Death of Ivan Ilyich and Ethan Frome; we also read more recent and shorter pieces, such as selections from the anthologies Paul Gross had compiled from Pulse: Voices from the Heart of Medicine. Dr. Gross, faithful visitor to the classes, encouraged students to submit their memoirs to Pulse; to date, two have been published. We also read chapters from Frank Huyler’s books The Blood of Stranger and White Hot Light, both terse accounts, hard-hitting and lyrical, of Huyler’s experiences as an ER doctor in Albuquerque, New Mexico. And always—inspired, I hoped, by what they read, and gradually learning the art of revising—the students worked on their medical memoirs.

More changes were in store. In March of 2020, Covid forced us to pivot (the verb one saw everywhere) to Zoom. I assigned Thucydides’ account of the Plague of Athens, and in April I conferred with students by phone about their memoirs, many of which were now accounts of their experience in lockdown or as front-line workers. The students’ desire to go to medical school, to help people, was, if anything, stronger than ever. Outside the classroom, or rather the Zoom screen,  the genre of medical memoir spilled over more and more often into guest essays in the New York Times or accounts in The New Yorker of life in New York and elsewhere during the terrifying spring of 2020, and in the succeeding months and years as well.

Continuing to teach remotely in the fall of 2020 and the spring of 2021, I leaned more and more heavily on Zoom guests, many of whom would in any case have been too busy, or who lived too far away, to have joined us in person. Danielle Ofri spoke about her experiences at Bellevue, and the students became acquainted with Bellevue Literary Review. Frank Huyler Zoomed in from Albuquerque, New Mexico, and Celia and Bernie Bandman from Bennington, Vermont. Dr. Jonathan LaPook, medical correspondent of CBS News, had been scheduled to visit in person in April of 2020; instead, he Zoomed in both in the fall 2020 and the spring 2021 semester, talking about his videos for the Empathy Project, which he used as teaching tools at NYU-Langone.

My current assistant now had the double task of not only helping me with the technological tasks associated with Canvas software, but also of helping students with their writing. Canvas made it easier to comment promptly on student work, but (perhaps in accordance with the principle of “much is taken, much remains”) my responses were becoming less detailed. In the spring of 2020, my husband and I had decamped from New York to our chilly house in Vermont, where, hunched by the wood-burning stove, I had long phone conversations with my students about their medical memoirs. In September, still in Vermont, sitting on the porch or out on the lawn, I had similar conversations with the next crop of students. But these exchanges tended to dwindle; in the spring of 2021 and even more in the fall, I had less patience for going over student papers sentence by sentence. I could blame Canvas, I could blame the weariness of Zoom; but it was also just me. “You’re getting two pairs of eyes for the price of one,” I told my students. It was true in a way, but John’s eyes were becoming more useful than mine. John was in his early thirties; in the fall of 2021, I turned seventy-three.

The course was still useful to students—perhaps more useful than ever, but in a slightly different way. Increasingly it was coming to feel like a pre-professional course. A few of our guest lecturers were writers, but many were not. Inevitably, the visiting doctors brought the world of medicine into the Zoom room with them; they answered questions about their careers, their professional lives, their balance of work and family, their experience of the pandemic. All this was inspiring and timely; it was also at a remove from literature. And it was inevitably at a remove from the experience that had originally set me on the path of teaching this course. October 2021 marked a decade since George’s death. The public trauma of the pandemic was replacing the private trauma of his illness and death as the motivator, the sometimes unseen but omnipresent original motivator of the course.

This semester (Spring 2022), for the first time in several years, I’m teaching Literature and Medicine on the graduate level, and I find that the emphasis of the course has shifted again. Not surprisingly, we’ve read more about plagues: Thucydides and also Defoe’s Journal of the Plague Year and Camus’s The Plague, in Laura Marris’s new translation. We’ve read various selections in John Stone’s rich anthology On Doctoring. We’ve read Frank Huyler’s new book White Hot Light. Other texts I’ve taught from time to time in the past—Woolf’s essay “On Being Ill”; Jurecic’s Illness as Narrative—will make comebacks. Zoom guests keep coming; Huyler has visited and Jurecic will visit next month. We’ll be reading selections from Pulse, and Dr. Gross will visit the class, perhaps even in person. New Zoom visitors this time around will include Sara Grossman, a poet and scholar (and a graduate of our MFA program), who works at the intersection of ecopoetics and disability studies; Sienna Craig, an anthropologist with a special interest in Tibetan medicine; and Philip Alcabes, who specializes in epidemiology and public health and who has asked us to read Tony Kushner’s Angels in America.  My son Jonathan, an herbalist and acupuncturist who has Zoomed into undergraduate iterations of the course in the past, has tuned in this semester as well.

So, a mix of old and new texts and guests. And once again, the students will be writing medical memoirs. Predictably, the students have all been affected by the pandemic. All have medical tales to tell; all are curious about the intersection of literature and medicine. So far, perhaps, there’s not a great difference between this small group, composed of MFA poetry students and MA students in English, and the undergraduates I usually teach. Yet however nuanced, the differences between the undergraduate and graduate students, and hence how I teach the course at each level, are unmistakable.

First, the graduate students are much better read, and they certainly write better, than my undergraduate Literature and Medical students, who are overwhelmingly pre-med. Virtually none of the latter group are English majors; many are ESL students. Beyond this, the graduate students show greater interest in issues like genre, authenticity, and authorial privilege. The complex issue of genre came up in the first meeting of the graduate seminar, and it has never gone away. Rightly so; I’ve long bristled at seeing Frank Huyler’s work, for example, described as fiction. The students pounced on William Carlos Williams’s piece (is story the right word?) “The Use of Force.” Genre is an issue in Defoe; Journal of the Plague Year reads like, well, journalism, but is it?

This hyperawareness of genre was accompanied by what Ann Jurecic, as I’ve already mentioned, might call “the hermeneutics of suspicion.” These students don’t necessarily doubt the truth of what they’re reading, but they often pose challenging questions like “Why include this and not that?”  What is the author’s motive and prerogative? In a set of questions they developed early on, which we agreed would be posed to each visitor to the class, two overlapping queries stand out: “How do you tell medical stories without disrespecting or hurting any of the people involved?” was one. A similar question was: “How do we carry language about illness with care, so as to reduce harm but still produce an honest account?”

If not suspicious, these students are wary and cautious. An oral report early on in the semester anatomized the ways empathy has been presented in medical school education in recent decades. Week after week, we chewed on the problem of empathy. We uncovered layers of confusion (what’s the difference between sympathy and empathy? It turned out almost no one knew. And how much did that matter?). We scrutinized the idea that reading canonical literature can inculcate empathy. There were far more questions than answers, but every teacher knows that questions are often more illuminating than answers.

It’s probably not a coincidence that all the members of this graduate seminar are more interested in literature than in medical careers. But beyond that, I’ve come to feel that this small cohort represents something of a sea-change in the reception of the course material. In earlier years, for example, the concept of empathy, like the notion of bearing witness to the stresses of being a doctor or caregiver as well as a patient, had struck the students—as once it had struck me—with the force of revelation. Now everything seems more complicated. For this group of students, empathy is valid, it’s real, but it isn’t a panacea. How can it be? In the world of Covid, empathy will get you only so far. “Empathy isn’t the only thing to talk about,” my son observed drily when we were discussing this change. The lively and entertaining and sometimes moving videos in The Empathy Project, which my undergraduates had seemed to love (of course it’s a lot easier to watch a short video than to read), struck some in this group as …“well, corny,” said one student carefully. And I found that I didn’t disagree with them.

So maybe I’ve changed too. Whether as cultural critique or as microcosm of the United States in the Covid era, the emphasis of the course has shifted in the past few years from the issues of social justice the pandemic has laid bare to concerns which, while related, are a little more abstract: power, privilege, gender. Hadn’t all these themes had been present in embryonic form from the beginning of the course? Yes, probably. But caught up, in the early years of teaching Literature and Medicine,  in my own struggle to achieve a balance between my role as teacher and my role as wife and caregiver, I hadn’t been paying so much attention. The pandemic taught us all a great deal; but there was always more to discover, and I’m in the process of learning from this group of students.

The passage of time is also a teacher. George began to show cognitive deficits before he was out of his fifties. I was four years younger; and I now realize that during the long years of his decline, I felt artificially exempt from time. The people I met and made friends with in various support groups, or at the facility where George spent the most time, shared this sense. Our spouses were prematurely aged, so we were—we almost had to be—preternaturally youthful and vigorous. Developing and teaching Literature and Medicine was one more way of maintaining my agency, of not being overwhelmed by events.

But now, into my seventies, with a loving husband, I’m allowing myself to feel, if not overwhelmed, then at least a little tired. I’m allowing myself to remember that the personal and pedagogical adventure of developing and teaching this course has been only one strand in my career at Rutgers, let alone in my life. It’s something I have loved doing and have continued to learn from, but I wouldn’t want to go on doing it forever, even if that were possible.

Tennyson again:

Though much is taken, much abides; and though We are not now that strength which in old days Moved earth and heaven, that which we are, we are…

Perhaps, when I’m no longer around to teach Literature and Medicine, someone else—maybe one of my numerous former students—will take on that job and move earth and heaven a few centimeters. Inevitably, they’ll teach the course differently. Maybe I’ll even get to listen in.


March – May 2022