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Seeing
the Difference
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is this project about? What questions does it address? Excerpts from "Conversations on Death and Dying" |
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Regina Barreca has given us a stark dichotomy. She gives us death as "separation," as "difference." But so too do we, in our various disciplines, view death "differently." Dying bridges a "no man's land" where the unfathomed and the unknowable confront the scientific and the humanistic imaginations. While death may be the vanishing point of medical knowledge and representation, it is also a point of mediation. Neither doctors nor humanists, nor artists or policy makers can provide all the answers where death is concerned; any inquiry into its cultural, scientific, and perhaps even spiritual contours must be a plural one. "Seeing the Difference"
brings together three angles of perception: those of clinicians, humanists,
and artists. These conceptual frameworks offer in turn different ways
of understanding the dying body: the medical view of the body as literal
text for implementing physical and psychological change; the humanist's
view of the body as the site of complex layers of meaning to be explored
through a range of interpretive strategies; and the artist's creation
of the body in terms of alternative explanatory systems that may mediate
between the physical and the metaphysical, that may confront an "unknowable"
or "inexplicable" and give it form. Our project is in one sense about what cannot be figured: it is about absence, "negative space," "silence," and the liminal. But it is also about "making meaning" of what seems a paradox. Its purpose is to take up the challenge offered by psychiatrist and anthropologist Arthur Kleinman when he emphasized--in a residency at Berkeley in 1997--that when we address severe illness and the processes of dying and death, meaning cannot be made in medical settings alone. |
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II.
Technology, Time, and Consciousness in the Dying Process III.
An Engaged Seeing |
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Sandra
Gilbert, Ph.D., English, University of California, Davis
… When my daughters and I were led into the small, pale, shiny hospital cubicle where Elliot lay after what must have been a terrible six-hour battle to survive the surgery that killed him, we found ourselves at first, as we stared at the silent stone version of himself that he had become, in a space that was bleakly filled by corporeal substance. This death that had suddenly, gigantically, opened around us—opened perhaps rather more like a huge black umbrella rapidly unfurling, than like a stately black tree unscrolling its branches— this death was hardly the soothing presence that Walt Whitman describes in "When Lilacs Last in the Dooryard Bloom’d," his great elegy for Abraham Lincoln, as a "dark mother always gliding near with soft feet," a "strong deliveress." Serious and material rather than maternal, this death forced me, horrifyingly, to confront the metamorphosis of a body I had loved into a dead thing that now appeared to be the material of fate itself. … To readers who have never mourned, the elegist’s intimacy with death must seem like ghoulishness. Such apparently unseemly intimacy may be what frightened the Church about Samhain, with its welcoming rituals of lanterns and soul cakes. But those who mourn, those who summon the dead while intuiting and perhaps resisting their calls into death, know that it is essential to speak of death and the dead because if those who have died are still part of us even while they are part of death, then death is part of us too." -- Sandra Gilbert "An embalmed body is sanitary, and therefore not threatening to the living; an embalmed body can be preserved, made to fit into the hectic schedule of people traveling long distances to attend the funeral; but most significant to funeral directors, an embalmed body must be seen in order to have value as a source of familial and communal healing. Contrary to the common, familiar critiques against the industry, these ritual specialists argue that the cosmetic aspect of what came to be known as "restorative art" does not lead to the denial of death, but rather to a safe, humane confrontation with its undeniable reality. Embalming allows survivors an opportunity to look death square in the face and in its still silence, recognize the finality without experiencing the terror and dread typically associated with corpses and the processes of dying. One writer cooly and rationally gave the following explanation for embalming: "Humanity, being socially and sentimentally minded, derives a great deal of mental satisfaction from mental images. The last view of a departed one may bring consolation if evidences of disease and suffering have been eradicated." For this and other reasons, embalming is often identified as a "healing art" by many within the industry." -- Gary
Laderman "…what do we want? And I would suggest we do need a kind of acknowledgment. When we imagine our own dying, there is something we want. We want some form of acknowledgment, some form of recognition.... So in thinking about what we need, I’ve suggested not just to be seen, not just to be heard–we’re ambivalent about those things–but there is this kind of acknowledgment that art talks about. And I think it’s extremely interesting to think about the tradition of embalming, and how important it is for people to be seen as beautiful in some way. And it’s easy to be critical of that, but it’s also very interesting to think about how different is it to need to have the dead do our mourning, in which case, we really are using our fantasy, our imagination of connection with the dead, as a way of empathizing, rather than starkly seeing our loss. But putting a maternal–there was this comment about that too–putting on cold death maternal arms, by empathizing vicariously with the one we love. Of course, we may not always love the dead, but I’m just using that, that bestowal of meaning, through projection, through empathy, in this sense, allows us to take something back in. And in a sense that is not necessarily a beautification, but is an aesthetic and emotional transformation, rather than a stark recognition. And so is it that different or that hard to understand why the American public, in general, need to see an embalmed other face restored, a disfigured face restored. I mean, it’s very interesting to think about the meaning of that kind of restoration." -- Jodi Halpern "I’m not so sure that I would agree that dying ends a conversation. That a lot of what I was picking up from Sandra, her meditations, personal narrative, was something along the lines of death ends a lack of a better relationship, that it’s absolutely essential for the living to make meaning and come to terms with and memorialize and reword those relationships as long as they are alive. So that suggests in a way that when we think about issues of embalming, and whether or not that fits the denial of death, that perhaps the old idea of the denial of death just meant the denial of death as if it were some kind of external reality that’s out there in the world. But we all know that that’s not true, that death is as much a fact of our imaginations as it is of any existential or objective reality. So keeping the conversation going, I think, is really essential." -- Thomas Cole "…it seems that in some ways we are a culture obsessed with death, but obsessed with producing the idealized death. For example, this Tuesdays With Morrie book. I thought it was wonderful that Morrie got to die in such a nice… you know, in a way that he was coping, he was humorous, he made dying easy with his family, so on and so forth. And yet our culture’s celebration of this type of death implies that there’s a good death versus a bad death. And that if you’re dying and you’re bitching and moaning all the time, and you’re complaining, or if you don’t want to talk, you don’t want to open up, somehow you’re not doing it right, you’re not dying. And that we have sort of culture ideas of the ‘good death’ versus the ‘bad death.’" … He died in the way… in his terms, which is fine. But having his terms apply to everyone else seems to be wrong. And so maybe what the dead want is the recognition they want is to be seen an individuals, not at some sort of there’s one way to die and this is it." -- Sarah Liu "… what is it that the dying need? And I certainly don’t claim to have the answer to that, but one of my thoughts is that I don’t believe based on my experience and my research that it’s so much death that people fear oftentimes, it’s the dying. And it’s the process of dying that your photographs portray that sometimes can be so painful and so ugly, and it’s not beautiful always. But I think in our society that sometimes we fear or we avoid anything that is ugly. I’m not sure we’re obsessed with death, I think we’re obsessed with beauty, the beautification of things. And so when people are dying, they become ugly in a physical sense, they become helpless, they suffer. And then people are grieving, they become ugly, physically ugly–their faces contort, they feel the pain, and they express that pain. And that’s what we avoid is that discomfort with that ugliness that’s just part of life. We talk about death… maybe to accept death is part of life. I think we need to accept ugliness as part of life, that that’s how it is, and we’re not always happy and beautiful, and we can’t be. …And so your work, I think, portrays that, it portrays some of that ugliness. And when people are old and helpless and ill and ugly, what it seems to me they need is someone who can overlook that, somehow learn to deal with the repulsion that we feel when we see that, and still be there. -- Elizabeth Davies "… [this] is really quite profound because it struck me in all the talks, that we’re really dying as we live. And I was struggling to find the insight that you just provided, and that is, that virtually all our life rituals are built around idealizations, that we’re always prettying up life, whether it be at birth, at birthdays, at weddings and so on. The ugly parts of our lives, we have found no medium to portray. We don’t photograph divorce proceedings, we don’t, as far as I know, ritualize the ugly moments in our lives. So this is not a plea, somehow, for the beautification of those ugly events, quite the contrary. It would be to find some aesthetic that does not rely on beauty alone, but honestly confronts and represents, say, through photography, poetry, that which in our day-to-day lives we’re not facing either, so in some sense, we’re very practiced at this perfectionism, at this idealization. And it’s not at all surprising to find that at the end of life to be so well honed and so problematic." -- John Gillis "Today, death is now regarded as the enemy. We are mostly considered as isolation. Those who were hoping for miracles, also feel it as a betrayal. To die is perceived not as something inevitable, a moment to be treasured, but it’s an avoidable mishap. ‘If only the person had the strength of character to hang on a little longer, until the inevitable miracle drug came along.’ Death in this secular age is rarely promoted as an opportunity, rather as a defeat." -- Larry Schneiderman "So I’m going to start with an anecdote. … When I saw [Mr Reggie], he was in the ICU, the Intensive Care Unit, in a coma, on a ventilator, with his family around the bedside. We all agreed that he would not want to continue like this if there were not a reasonable chance for some recovery. After reviewing his brain CAT scan with a radiologist and a neurologist, it became apparent, quite clear, actually, that he didn’t have such a chance. So Mr. Reggie’s family and I decided that we would all meet at his bedside the next morning and turn off the ventilator, ‘pull the plug,’ in common parlance. We planned his death. The next morning, Mr. Reggie’s wife and children and minister met me as planned at the bedside. I explained that I was going to turn off the ventilator, pull out the so-called endotracheal tube that had been inserted into his throat, the equipment that was delivering air or oxygen to his lungs. Since I believed that he would not be able to breathe on his own, I said that this would result in his death. I proceeded to do as I described and, indeed, Mr. Reggie never took a breath on his own. He was dead by one very old criterion. But something unusual then happened at his bedside. Mr. Reggie’s heart’s EKG, electrocardiogram monitor, the one that Dr. Schneiderman spoke of earlier, was on, just above and to the left of his head. And we all stood there transfixed by this electronic representation of his life, watching the ever-slowing tracing of the electrical activity of this man’s dying, or what we thought was this man’s dying, but not dead yet heart, and listening to its soft beeping accompaniment. Mr. Reggie was in some strange liminal state, as were we, for what felt like a very long time. Then somehow… something broke the spell, and I turned off the monitor, announcing at that time, as doctors are want to do, that the patient had died. The family then turned their gaze and attention to their beloved …" -- Guy Micco "…Can one learn compassion in the anatomy lab? I’ve been a teacher of the medical humanities for about 18 years now. And when we teach first-year medical students, I’ve always been very uncomfortable with the lack of humanistic education that goes along with gross anatomy. And for years, I said, ‘Well, we need to have a memorial service. We need to talk to them about how they’re feeling, we need to help them imagine these people.’ And my colleagues just looked at me like I was nuts, especially the anatomists. And I am nuts, so that’s nothing new there. But I basically decided that the most effective way to try to explore this was through the medium of film. And I have long been convinced that there’s a deep relationship between the donor and the dissector. Although, your idea about not life and death but life-death, makes me sort of reconsider just the very language here. So the basic idea of a film is to explore this relationship between the donors and the dissectors, with a notion that there’s a lot that we can learn as mortals, as students, as teachers, and as donors." -- Thomas Cole "Let me, first, take seeing in an entirely literal sense. Thus, I should interpret the meaning of seeing death, as, rather, seeing the dead. This is always a complex act, subject to various interpretations, stemming from different motives, and yielding diverse perceptions. The sight of a cadaver is both avoided and sought. It exerts a unique, ambivalent fascination. It attracts and repels at the same time. The sight of a dead person hands us an obscure premonition of our own future dissolution. Thus, the presence of a cadaver carries that morbid fascination that one experiences at the edge of a precipice. Our instinct is to flee, but there is also a pull towards the void. The result is an ambiguous sensation of double valence, an anguishing kind of contradiction, a sort of metaphysical vertigo. The sight of a cadaver poses a riddle. It has been said, using a technical and somewhat pretentious language, that the corpse remains as an empty signifier devoid of its phenomenal causation. In plain English, we see a presence that remits us to an absence. For we see someone who is no longer there, who has already departed. But perhaps we should correct this statement, and say that we see not someone, but something." -- Frank Gonzalez-Crussi "I was very moved by Jim Goldberg’s picture, in the very last hours with his father, with the picture of the bed and the chair. And I understand that chair as being symbolic of the capacity to dwell. Even when you’re reduced to bed and chair could be a place to dwell. And a longing to move, even from the bed to the chair as a last act is really profound. And then the chair is empty and he cannot get his father to the chair. And that sounds like, smells like, feels like many deaths I’ve observed." "… I was struck by in Jim [Goldberg’s] comments about Fran, the love object, the intimate stranger, the compassionate stranger, who comes in, in this free relationship to laugh and to joke and to pay attention to favorite drinks and positions and the very physical world, in a way that sometimes family cannot do simply because they are losing their world. And there is a bit of anger, there is a real tug of war of letting go, and we have this incredible cultural invention of the compassionate stranger, who would come and who would talk about ordinary things. And for me, this is Mr. Baker, when I was 19 years old. And I had known his wife very well, worked with her in the office, and here I was learning to be a nurse. And he said, ‘Well, because you’re a nurse you can bear this.’ I was 19, give me a break! And I thought, ‘How can I be with Mr. Baker, and I love Mrs. Baker.’ And I knew I had nothing to offer. And it was in the early death awareness era, when we were going to not keep it a secret anymore. And what Mr. Baker taught me was that he still liked his coffee really hot. He liked his bed where he could see the sunset. He wanted a flower where he could see it. He wished he could go home one more time. And he still liked a good joke. So there is this thing about what it is to have a world that we confront in facing death and being with the dying." "From a contractual vision of meeting autonomous strangers, we do not think of ourselves as being constituted by others, and tend to think of the moral self as that which is owned by the self and freely chosen. Care, connectedness, responsiveness, and interdependence are signs of a moral lapse and are sources of embarrassment for the strictly autonomous atomistic vision of the individual, of this individual who is this self-possession. For the autonomous choice maker, care and caring practices can seem as yet one more set of choices until the position of caring and needing care intrude because care always implies situated or bounded choice. I mean, it is bizarre that much of the language of death and dying is so colonized by choice language, as if it is a choice or we’re really ever able to confront it as a choice. In intimate spheres, loving a child or a parent, such relationships preclude freely choosing to stop caring about the parent or the child, though one may physically separate from the other. In less intimate spheres, when one is vulnerable or incapacitated, choices about being cared for and receptivity to care are constrained. Care, publicly and privately, are bound up with the human condition. And the thing that I would like to bring as a nurse to the conversation is the way that our care both holds open and closes down worlds. And I think what you were finding in the situation, Jodi, that you described as social death before physical death, or social death being so powerful that a life couldn’t be reconstituted. And the instrument of death was really the social community, the husband, the very sophisticated ethicist who had learned to honor autonomy above all." "Now, I don’t imagine that any of us can get by without the skills of disengagement. But I think that what we want to also learn more about are the skills of engagement, you know. And those are very tricky–not to be over-identified, not to be over-involved. It’s incredibly difficult to be the intimate stranger and compassionate stranger in a way that doesn’t leap in and take over or get control and go on imagined powers that you don’t have as a helper, to learn how to be there and be helpful, to learn the holding spaces that are not intrusive, and to have a kind of likeness to them. So it seems like we need to be able to talk both about appropriate disengagement but the positive project, the skills of engagement, the skills of involvement."-- Patricia Benner |