Tag Archives: health humanities

Audre Lorde, Thirty Years Later

Our seminar readings this week include Audre Lorde’s The Cancer Journals. I’ve written about that book many times. Here are my current thoughts.

I feel like writing “Dear Audre”, because her/your work speaks to me directly, as a dialogue. Lorde’s writing makes Anatole Broyard’s Intoxicated by My Illness seem like a performance—a brilliant performance and one he desperately needs to believe it—but still a performance. Broyard needs his audience in a way that Lorde doesn’t. She’d like to move us, sometimes, and other times to persuade us, but she doesn’t need us. She knows who she is in a way that leaves me wondering whether Broyard really does. He knows who he’d like to be, and he mostly pulled off being that, but the quality of work in his writing differs from hers.

To go back to the beginning of my relationship to this book, simply getting a copy of The Cancer Journals wasn’t straightforward in the early 90s. I’d heard about the book a long time before I found a small feminist independent bookstore in downtown Calgary that would order it for me. The publisher, spinsters/aunt lute, had limited distribution. Holding a copy, when it finally arrived, felt like a hard-won treasure. 

My reading was continually interrupted by my compulsion to run to wherever my wife was and read a passage to her. She’d stop and look at me, hearing it, and we both felt like somebody out there had experienced cancer the way we had. That connection is what illness narratives, memoirs, are.

The line that spoke to us first was: “Your silence will not protect you” (20). There had been so many silences during my cancer, and even more during the months between my mother-in-law coming out of her last remission and her death. So many silences, and far from anyone being protected, relationships were so fractured by those silences. Some finally were repaired, others never were or have been. On our account Lorde could have said: Your silence will corrupt you, impairing your life worse than the effects of disease itself.

The work of memoir truly is “reclaiming of that language which has been made to work against us” (22). Has anyone since Lorde ever claimed, so compellingly, her right to speak, to fill the silences with her need to use language to speak of what happens truly? The question she raises is crucial: what are the languages that work against ill persons and their families? We need a list, possibly beginning with medical languages, then extending to all sorts of evocations of health.

When I read The Cancer Journals, the memoir I had written, At the Will of the Body, had had some success (if not the sales that the publisher imagined in his dreams), but I was unsure what followed. Alongside what Lorde said about silence, what she said about work was crucial to me. Her most non-rhetorical question, “because I am myself, a black woman warrior poet doing my work, come to ask you, are you doing yours?” (21), went straight into me. Thirty years later, it’s what I still ask myself: am I doing the work that I, given who I am, can do?

Cancer on Lorde’s account is not an experience, as in “the patient experience”. It’s a calling to a work. Are you doing yours? Albert Schweitzer wrote, after his own critical illness following World War I, of the fellowship of those who bear the mark of pain. Lorde would, I think, have understood that phrase, and Schweitzer would have understood what she meant by work.

Broyard observes that doctors discourage our stories. Lorde would the expand the scope and raise the intensity of that. The point of her most specific stories—especially the nurse who demands she wear a prosthesis, a “form” (58-9)—is that medicine demands that patients participate in enacting a particular narrative, which I later called the restitution narrative. For Lorde, that narrative legitimates the demand to consider breast cancer as a problem of public appearance, and one that is readily solved with the proper prosthesis. “Her message was, you are just as good as you were before, because you look exactly the same” (42). That’s written about the Reach for Recovery volunteer, whom Lorde sort of likes personally, but who represents a toxic narrative. The nurse is more explicit when she tells Lorde, “Otherwise [not wearing a form] is bad for the morale of the office” (59). Never have I read such a clear example of how healthcare workers impose their needs on patients, redefining those as the patients’ needs. The nurse’s speech is language being made to work against Lorde, from which she needs to reclaim a language of her own. I have sociological reservations how far any language can ever be ‘our own’, but Lorde sweeps those aside; she compels me to believe she speaks for herself.

What I’ve said–what she says–crystallizes a tension that needs to be kept alive when we place illness narratives under the rubric of medical humanities or some such. What’s the work that such rubrics imply? Reading Lorde, the work seems to be this: How do we help ill people’s narratives do their work of reclaiming experience in the person’s own terms, which is often reclaiming from institutional medicine? I imagine how Lorde might have spoken at some of the healthcare conferences where I’ve given plenary lectures. I feel the guilt of wondering whether I was doing my work.

How far is it possible, I’ve asked myself for years in multiple contexts, for healthcare to recognize the dimension of illness that lies beyond the disease, what Lorde calls “the whole terrible meaning of mortality as both weapon and power” (53). Doctors don’t just discourage stories. The whole healthcare complex is organized to blunt the weapon and power that Lorde is pointing toward. That blunting is enacted in the nurse’s demand to wear a prosthesis. It’s the point of waiting rooms: not only to optimize physicians’ time by having patients always ready, but to induce passivity in those patients by wearing them down, teaching them to devalue their time, to be the supporting actors who sometimes come on stage to be a foil to the lead, but mostly sit waiting in the wings.

Lorde’s line, “In order to keep myself available to myself” (65) is for me a found version of a Zen koan. What does it mean, to be available to yourself? Lorde recognizes this complexity early in her book when she asks herself: “And which me was that again anyway?” (24). There is never a singular self, transparently self-knowing. But, that doesn’t mean that people should cease asking whether they are available to themselves, and what is the currency of that availability? For Lorde, it seems to be a currency of friendship in life as she lives it among women, and writing, as her work. I hope that circle can then expand to others of us who ask her questions, seeking to participate in her work.

Here’s a tentative definition of the work of memoir: As the author makes themselves available to themselves, the effect is to allow readers greater availability to themselves. In hearing Lorde’s stories, we can reclaim our own, as weapons that are a source of power. Lorde’s chosen words, weapons and power, would not be my choice of metaphors; for me, weapons especially have too many other connotations and memories. But Lorde reminds me, all these decades later, what it was about, what the work should be, and what remains.

Returning to Illness Narratives

The first iteration of this blog ended an embarrassingly long time ago, two year plus. My focus had been on how to do “vulnerable reading”, with Shakespeare as my exemplary text. At least for me, that series of postings was useful. I quit writing the blog when I began writing the book that is scheduled to be published in August by Oxford, as one title in their new “My Reading” series: King Lear: Shakespeare’s Dark Consolations. I’m now doing final corrections on the galley proofs, which has the effect of making Shakespeare the last thing I want to write about, but … he’s become part of my thinking.

The occasion of the series of blogs that I now start is my participation with my colleague Danielle Spencer teaching the seminar on narratives of illness and disability in Columbia University’s graduate program in Narrative Medicine. I have had various involvements with the program since Rita Charon initiated it, and it’s wonderful to have an opportunity to co-teach this seminar, especially to work with Danielle. But pretty obviously, that means reengaging with writing that I have, mostly kind of, stayed away from for the last few years.

These blog postings will be directed specifically to students in the Columbia seminar and will, after today, refer to reading we’re doing, but I want to write in a way that I hope will interest other readers. The word challenge has become inflated in overuse, but deciding to do the course is a challenge for me. One level of this challenge is whether I still–twenty-seven years after writing The Wounded Storyteller–have something to say about narratives written by people who are a generation younger than I am. Another level of challenge is what first-person stories always confront us with: What’s our tolerance for staying the room, continuing to listen, and opening ourselves to what we often don’t want to hear, because it threatens us. If you don’t feel threatened when you read an illness narrative, either you or the writer isn’t doing their job, and I tend to think it’s me, the reader, who’s failing.

When I began reading illness narratives after my own critical illnesses were (mostly) resolved, the threat in what they described–that bodies unexpectedly and inexplicably fall apart, people have to endure multiple sufferings, many die, and even for those who live on, survivorship is complicated–that threat felt to be a kind of homeopathic remedy. I already felt so threatened that someone else’s trouble helped me get on with my life. In the word I’ve used a lot in the last years, the writers of illness narratives became my companions; we were in this together. Some I eventually met or corresponded with; others died or dropped off my radar. But in their troubles I found ways through my troubles, or at least companionship in troubles there is no way through.

I return to illness narratives with those memories, which may also be expectations, but also as someone who has enjoyed a long period of remarkably (given my age) good health. The metaphor of going home seems inescapable: reading these books is like revisiting a place I once lived and knew well, a place that formed who I am today, but a place I haven’t visited in some years, and it has changed as much as I have. So the challenge is: in what sense is this still home, or where else is it, for me now; what work do I have to do here?

Who’s there? is the famous first line of Hamlet, and it’s a question that characters in King Lear keep asking; it becomes a refrain. In context, speakers of that question literally can’t see who approaches, but that’s the superficial occasion of the question. Characters realize, more or less, that they don’t know each other, and the most interesting characters realize their own uncertainty about who they are themselves. When Lear’s world is falling apart, he cries out: “Does any here know me? This is not Lear. / Does Lear walk thus? Speak thus? Where are his eyes?” (1.4.199-201, RSC edition). When I read illness narratives today, that’s the question I hear the writer asking, and it’s the question that the narrative calls me, as a reader, to ask about myself.

Who’s there, both as the writer and as the reader–that’s the first question. The second question is how we need each other. Writers, whether writing in a position of current illness, or tenuous survivorship, or anticipation of dying, try to find, in the words, who they are. Reading these stories, readers are called to ask who they are. Zen master Dogēn’s words describe the relation well:

“To study the Buddha Way is to study the self;

to study the self is to forget the self;

to forget the self is to be confirmed by the ten thousand things.”

To study–in a zen sense of engagement–your own illness as a writer, or to study an illness narrative as a reader, is to see yourself looking back at you. Writers see themselves in the words they offer to readers; readers see themselves as they recognize the parameters of how they respond to these words–what response each is capable of. Writers and readers are each is asking, from different but mutually dependent perspectives, Who’s there?

When Lear asks, “Who is it that can tell me who I am?” (1.4.203), the Fool answers: “Lear’s shadow?” That, I believe is the fear of the ill person: am I the shadow of who I was? And it is the challenge to the reader: in my response to this suffering Other, am I a shadow of the person who could respond fully, openly, holding nothing back, defending nothing.

Far be it from me to offer a gloss on Dogēn’s last line, but pretty clearly it recommends that the self can find itself only outside itself, “ten thousand things” being the figure of speech denoting all material presence, without distinction. To write an illness narrative is to bring into being a new thing, call it the ten thousand and first thing. The appropriate zen response to such creation is to bow; how do we read as an act of bowing? To read an illness narrative asks us to give up a sense of threat and feel confirmed, but that’s an immediately inadequate verb, because what is confirmed is that there is no subject to be confirmed. There are only so many things, now present, moving toward absence that is a form of return.

Just as we speak of the fog of war, we should never just say illness, but always instead the fog of illness. We–clinicians, family members, those who are ill, those who hear and read these stories–are all in that fog. We ask, “Who’s there?” and in that question, we always ask about at least two.

Wild, in Shakespeare and Health Humanities

I’ve been preparing to offer a workshop on King Lear next week in Tromso, Norway, and at the same time starting to read David Hinton’s new book, Awakened Cosmos (Shambhala, 2019). Hinton returns to and revises one of his earliest translations, Tu Fu (a.k.a. Du Fu in other translations; see especially David Young’s book). Each chapter presents one poem in Chinese characters with literal English translations of each, then Hinton’s translation, and finally a commentary of several pages. It’s a wonderful book, saying again what was said in Hunger Mountain (2012) and Existence (2016), but–and this is the point–there isn’t really that much else to say. What matters is how the poems, and the visual arts in Existence, might allow us actually to hear or see how little needs to be said, or can be said. Paradox is one of Hinton’s themes, as a crucial device of Ch’an teaching: how do you say something about what language cannot express? That idea exists in multiple forms in different traditions, from theology to Wittgenstein.

But my concern is reading Lear alongside Tu Fu, and the key word to that juxtaposition may be Hinton’s usage of wild. Hinton does not attempt to define wild but allows our sense of what he means develop through accumulated usages. In one passage that seems especially important, he writes of “wild forms” that “are not themselves part of our systems of human meaning.” That’s an idea we find elsewhere, but then Hinton adds a layer: “and since our linguistic human meaning-making is just one more of these forms, it too is wild and meaningless”–which seems another paradox. “Hence,” he concludes, adopting an uncharacteristically (ironically?) philosophical turn of speech, “the human is wild, and meaning is meaningless” (42). Tu Fu, at least one aspect of Ch’an, and Hinton’s own work, are about getting us not to nod in agreement at this reasoning, but internalize what wild implies, where it leads us, as a lived practice.

Lear is a terrifying play. It’s not just what humans are shown capable of doing–people do horrible things to each other in other plays. But in Lear there’s no bottom to it. Horatio calls upon flights of angels to sing Hamlet to his rest. No angels at the end of Lear, only the echo of Lear’s dying words: “Thou’lt come no more. Never, never, never, never, never” (V.3.326). No wonder the play was presented in rewritten form for 150 years, with Cordelia living to marry Edgar. The wild had to be tamed. That’s the issue we have to confront.

Maynard Mack, whose King Lear in Our Time I find most valuable, quotes approvingly Winifred Nowottny (1960), who writes: “The play is deeply concerned with the inadequacy of language to do justice to feeling or to afford any handhold against abysses of iniquity and suffering” (99). Wild, indeed. Lear is Shakespeare’s dark enigma, which is Hinton’s translation of the emptiness of mind that recognizes emptiness is itself a description, a form, an act of meaning making that is–in my understanding–an evasion of what is. Not what is as Presence, but what is before Presence divides from Absence.

This week I was also writing a blog posting for The Hastings Center and so thinking about bioethics, and I was engaged in conversations about health humanities. So I take these thoughts back to those pursuits. My recurring, comically recurring, objection to much of bioethics as well as much of social scientific research is its failure to reflect on how it positions itself in relation to the wild. Especially the banality of the policy or clinical practice recommendations with which research articles conclude. Well intentioned and often desirable as such recommendations are, they protect writers and readers from the wild that the observations risk opening up. In this denial, they obscure what they ought to make observable: the abysses of iniquity and suffering. Take abyss seriously, in what the word seeks to convey.

My current work depends on the hope that by bringing either Lear or Tu Fu into the conversations, bioethics and health humanities can at least resist acting to repress the wild. I seriously doubt if bioethics could be bioethics–could do its job–if it were, itself, wild. But I also don’t think it can do its job responsibly if it represses the wild, because human life at its extremes tips into the wild; it’s where we end up. That’s what Lear and Tu Fu’s poetry both show, in utterly different ways. Health humanities could be where the wild receives recognition, if we can learn wild reading. Perhaps, in the form of critical response to literature that is distinctive to health humanities, the crucial gesture is silence. But I’m an old man, and it’s winter.

Age as Illness, Illness as Tragedy

When my father was about my present age, he used to ask me whether I thought that old age was an illness. We went round on that question, which doesn’t admit an easy answer. Old age is heavily medicalized, and health care is organized around categories of pathology. In the last few weeks of caring for my father, and trying to arrange for others to care for him, one of my most consistent problems was that his ongoing need for professional care is not based on illness; he’s not sick. But on the threshold of turning one hundred, he is increasingly vulnerable and in need. At least in the United States, that puts him outside the categories that qualify a person for insurance and other benefits, or at least on the margin of qualification.

That raises a second question. Old age is not a tragedy, but rather it’s an expected stage of life. Not reaching old age is conventionally described as a tragedy. But I constantly felt the tragic dimension of my father’s situation. Now, the world is good in the sense that help comes to us when we need it, and on returning home, I began reading Simon Critchley’s Tragedy, The Greeks, and Us (2019). Critchley has written about topics that always interest me, but I admit never being able to connect with his earlier books. With Tragedy, it’s as if Critchley had been watching me for the last weeks and writing the commentary that I could not articulate without his help. That, I believe, is what health humanities ought to do: Give people words that articulate what they feel but cannot yet say for themselves. It’s the work that this blog tries to do.

Among the many voices that keep clamouring in my head from the last weeks, the most poignant is that of someone whom I never saw. When my father was in the hospital, we heard, all day and I gather most of the night, some lost soul who as far as I could tell was in a room diametrically opposite to my father, on the other side of the circular corridor of the hospital floor. I can’t imagine being a room closer to his. His main cry was “Help me”. He was too exhausted to scream it, but loud enough for the whole unit to hear him. Sometimes he would say a bit more, including calling out a woman’s name. My father claimed he simply tuned out that voice after a while, and I think he did. So, I think, did the medical staff. What I now want to ask is the cost of that tuning out. Because you don’t select one voice for tuning out; you tune out a category of unhearables. You tune out part of the reality around you, and you pay a price, because what you tune out you still hear, on some level. It’s still there.

Simon Critchley would call that voice lamentation. He tells us that ancient Greek had at least thirteen different nouns for grief, lamentation, mourning. Our language is comparatively impoverished. Critchley as a philosopher is interested in how the project of philosophy defined by Plato has been about silencing lamentation. Philosophy, he writes, “appears to be committed to the idea and ideal of a noncontradictory psychic life”. Where he writes philosophy, I read medicine. Medicine also is “premised on the exclusion of a range of experiences that we can call tragic”. As I watched so many different healthcare professionals interview my father and interact with him, only the lowest paid and least credentialed seemed able to recognize the fundamental sadness of his plight, which is being someone who does not fit.

Critchley articulates my father’s situation most perfectly when he writes that “tragedy is the art form of between times, usually between an old world that is passing away and a new world that is coming into being”. My father’s sense of how things should be–of rightness as I’ve used that term–is grounded in a world that was already passing away fifty years ago. He is being cared for according to the values and customs of a new world that is coming into being, although much of it was predicted by Marx and Weber with prescient accuracy, although they didn’t realize quite how far it would go. For my father as for Hamlet, time is out of joint. His lamentation is quieter than the fellow around the corridor, but he too is saying help me, and the terms in which help is conventionally offered don’t fit.

These weeks with my father took me back to where I started in this work in the late 1980s after my own illnesses. We need to witness what happens to people–how care is sometimes generous and how it is often indifferent or denied. We also need to change the parameters in which people construct and utilize categories such as illness and old age. We need a health care that dares to be tragic, to hear and to join with the voices of lamentation.

Shakespeare’s Lessons About Care

My travelling companion during the last couple of weeks was Marianne Novy’s 1984 book Love’s Argument: Gender Relations in Shakespeare. Novy has many insights into how Shakespeare positioned men and women in the comedies and the tragedies. She is especially sensitive to moments when one character acts as the audience to another’s performance. In the comedies, “characters of both sexes can be alternatively actors and audience, cooperating in a relationship of mutuality” (83). Mutuality is Novy’s ideal for gender relations; she reads the plays as forming a continuum from mutuality achieved to failed mutuality. The failures tend to occur in the tragedies; that failure is both a cause and an effect of things turning tragic.

In the comedies, the male heroes enjoy women being actors in the dual sense of both active agents and role players. In the tragedies, “The heroes’ suspicion of female pretense darkens their view of the women, whether the women actually pretend or not. The men’s own acting–whether deed or pretense–discourages female participation….Thus, the tragic women are often confined to being audience to the hero, mediating the offstage audience’s sympathy with their own, as Ophelia does for Hamlet, Desdemona for Othello, and even Lady Macbeth for Macbeth” (82).

All this is interesting enough, but it becomes especially relevant to vulnerable reading in Novey’s later comments. She quotes Stanley Cavell’s essay on Lear, in which he writes that in both tragedy in a theatre and tragedy in actuality, “people in pain are in our presence”. What, he asks, is the difference? Cavell then makes what I consider a crucial comment on the ethics of responding to suffering: “In actuality acknowledgement is incomplete … unless we put ourselves in their presence, reveal ourselves to them” (90). That’s where I start thinking of clinical professionals responding to their patients’ pain and also family members responding. Novy’s commentary on Cavell seems to speak directly to the dilemma of response for clinicians, maybe especially hospital workers: “For the theatre audience … no self-revelation to those they see suffering is expected or possible” (90). That last phrase resonates heavily in my experience of hospital care.

Clinical professionals care, often deeply. But here’s the problem: “Many of the examples of sympathy expressed by the women discussed previously have been more like that of a theatre audience–incomplete by the standards of actuality–because they have been expressed in the hero’s absence”, Novy writes (90). Again her examples are Ophelia and Lady Macbeth. Cordelia is a significant exception, because she does express herself directly to Lear in their reconciliation scene.

Care, that most over burdened word, involves both doing and expressing. Those who are cared for often experience the expressing to be as important as the doing, and health humanities is about pulling up the expressive side of clinical practice. I remember a moment in a hospital rounds that I was invited to attend. The discussion was about a patient who was making demands that were upsetting because, in my view, everyone knew they were fully legitimate was embarrassed by not being able to admit that. At one point, someone in audience said, in a tone I heard as indignant, “Doesn’t he know how much time has been spent talking about him?” That line sticks with me because it expresses so much of what patients experience as lacking in care, and how professionals don’t get the problem. That audience member self-positioned like one of the women in a Shakespearean tragedy or the theatre audience member who can only express sympathy in the hero’s absence. The “Nothing about us, without us” thing hadn’t registered. Or in this instance, maybe it should be: nothing for us, except to us.

Ophelia and Lady Macbeth end up mad, then dead. Cordelia ends up dead, but we believe that in her last moments, she felt the redemption of being where she had chosen to be, having said what she needed to say. Getting killed is not, in itself, a tragedy.

Clinical care, especially in hospitals, is all about the duality Novy identifies between acting-as-doing and acting-as-role-playing, and I understand what she calls pretense as a neutral description of an actor’s proper work. It’s not about dropping the pretense; that’s not the goal that Novy imagines for Shakespeare’s women or I imagine for clinicians. What it’s about is achieving the mutuality in clinical care that Novy seeks in gender relations. The comedies are lessons in achieving mutuality; Novy even manages to rescue Taming of the Shrew from the oblivion of irredeemable sexism. The tragedies are cautionary tales of what happens when mutuality fails.