Illuminating the Twilight
Carol L. Rizzolo, PhD
Smashwords Edition
Copyright 2011 Carol L. Rizzolo
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The style used throughout this dissertation is in accordance with the MLA Style Manual and Guide to Scholarly Publishing (3rd Edition, 2008), and Pacifica Graduate Institute's Dissertation Handbook (2010-2011).
Table of Contents
Chapter 2. Epic Poiesis in the Stories of the Dying
Chapter 3 .Angels, Time, and God: What We Can Learn from Abrahamic Faith Traditions
Chapter 6. The Voices of Children
Chapter 7. Conclusion and Implications
Appendix A: Dream reports included in end of life dream series
Appendix C: List of Chapter Subsections
Chapter 1
~ Introduction ~
When [swans] perceive approaching death they sing more merrily than before, because of the joy they have in going to the God whose servants they are. Though indeed mankind, because of their own fear of death, malign the swans, and say that they sing their farewell song in distress, lamenting their death; they don’t reflect that no bird sings when it is hungry or cold or suffering any other distress.
- Socrates (qtd. in Plato, Phaedo)
Those who have the strength and the love to sit with a dying patient in the silence that goes beyond words will know that this moment is neither frightening nor painful, but a peaceful cessation of the functioning of the body. Watching a peaceful death of a human being reminds us of a falling star; one of the million lights in a vast sky that flares up for a brief moment only to disappear into the endless night forever.
- Elisabeth Kübler-Ross, On Death and Dying
The motif of storying by the dying recurs from the earliest known cultural mythologies and literature to the present day. King Gilgamesh, for instance, suffers the loss of his best friend Enkidu in an ancient Sumerian story inscribed in clay sometime between 2750 and 2500 BCE (Tablet VII). As Enkidu approaches his death, Gilgamesh sits by his side and listens to the narration of his friend. In ancient religious literature, the Old Testament Book of Deuteronomy is traditionally understood to be composed of stories told by Moses to the Israelites after God had informed him that he would die without ever setting foot in the Promised Land (Num. 27.13). In more modern times, The Death of Ivan Ilyich, by Leo Tolstoy, is one of literature's great examples of a man storying towards his death.
Gilgamesh bears witness to the dying Enkidu, the nation of Israel hears the words of Moses, and Gerasim attends to and witnesses Ivan's journey through the landscape of dying. Many works of literature focus on the wisdom found in the words of the dying, yet little research focuses on seeing through the stories to the depth psychological themes which emerge from the dying body in this physiologically unique state.
At the end of the life trajectory, the entire human being, both psyche and soma, are engaged in the dying process. In The Psychoanalytic Century, researcher Allan Schore explains: “From the beginning Freud posited that affective stimuli also arise ‘from within the organism and reaching the mind, as a measure of the demand made upon the mind in consequence of its connection with the body’” (65). In his essay “Psychological Factors Determining Human Behavior,” C. G. Jung writes, “The separation of psychology from the basic assumptions of biology is purely artificial because the human psyche lives in indissoluble union with the body” (CW 8: 232-262). In 1998, University of California researchers Marta Kutas and Kara Federmeier published an article in the Journal of Psychophysiology titled “Minding the Body” in which they claim:
Throughout human history, people in many cultures have sought to more fully understand the mind by understanding its relationship to the body. In so doing, philosophers and scientists have associated the mind with nearly every major internal organ. (135)
Kutas and Federmeier discuss the problem created when one begins to study the mind as a part of the brain without acknowledging that the brain itself is a part of the greater whole of the entire body. They write: “In the process of landing the mind in the brain, however, we sometimes appear to have forgotten that the brain is both responsive to and responsible for the body in which it is housed” (135). Using functional magnetic resonance imaging (fMRI) and positron emission tomography (PET scans), these researchers and others have demonstrated how “we take in information and interact with the world through our bodies, and our bodies change with - and in some cases change - cognitive and emotional processing” (135).
The Physiology of Dying
The human body is a complex biological system that is able to maintain life through a series of complicated metabolic processes. This homeostatic1 state includes a series of positive and negative feedback cycles integrated with each other and in communication with the rest of the body chemistry. A positive feedback cycle can be understood to be a system in which an increase in A leads to an increase in B, which leads to an increase in C, which feeds back to A and causes continued increase in A, such that A > B> C >A > B > C > A >B >C ad infinitum. In other words, a positive feedback cycle can be thought of as a physiological snowball effect. An example of a positive feedback cycle is milk production in a lactating mother. After the birth of a child, the body of a woman produces breast milk. As her child begins to suckle, the mother’s prolactin level, a hormone necessary for lactation, increases, thus increasing milk production and enabling the nursing mother to accommodate the increasing nutritional demands of her growing child. However, if the child was to stop nursing and the milk production of the mother were to continue to increase, a physiologically unchecked positive feedback loop would result, indicating that a pathological process was in play.
Fortunately, the body of a lactating woman, and indeed all human bodies, have negative feedback loops coupled to positive feedback loops. Thanks to this physiologic coupling, as the demands of the nursing child decrease, the production of milk by the nursing mother also decreases. The negative feedback loop responds to an increase in “A” with a biochemical system of checks and balances, causing A to either remain stable or decrease production. In this way, the level of A is maintained within a physiologically acceptable range for maintaining life. As in the above example, feedback cycles operate throughout the human body and the human life cycle and play a part at the time of dying. The homeostatic mechanism is a physiologic or cellular way of knowing, a cellular wisdom of sorts that exists in the body at a cellular level.
To maintain homeostasis, myriad negative feedback cycles within the body must be coupled with positive feedback cycles and; together, they must function in such a way as to sustain the life of the body. In his article “On the Dynamics of Dying,” physiologist Joseph Engelberg explains,
Homeostasis is brought about by the network of negative feedback cycles that pervades hierarchical structure of every organism. While negative feedback cycles preserve constancy, positive feedback cycles threaten organismal survival since they tend to drive physiologic variables toward abnormally high or low levels. An organism can only survive, therefore, as long as the positive cycles that are latent within it are held in check. (144)
In other words, life can only be maintained if the positive and negative feedback cycles in the body maintain a state of balance. However, as Engelberg explains, in the time of dying the negative feedback cycles become less effective, allowing the positive feedback cycles to cycle out of control and ultimately push the body beyond its capacity to sustain life (145).
During the dying process, many people experience pain, shortness of breath, digestive problems, incontinence, skin breakdown, and fatigue. Writing for the Merck Manual Online Medical Library, Dr. Joanne Lynn includes depression, anxiety, confusion, unconsciousness, and disability in the list of signs and symptoms that may also occur during the terminal phase of a fatal illness. (“Symptoms”). Individuals who are not actively dying may experience many of these symptoms at different times over the course of their lifetime; however, medical professionals recognize that this constellation of symptoms in conjunction with a fatal illness often indicates the imminence of death.
Modern science has done much to delineate the physiologic changes that universally occur in a dying body. And the field of biochemistry can explain many of the chemical changes observed in a dying body. And yet as clear as the science may be regarding the biological and chemical manifestations of the body at the end of life, studies that focus on the integral nature of the mind and the body of a dying individual remain rare. Using the lens of modern physiology, this project will examine the stories told of the time of dying as they have been written and mythologized in literature over the course of human history. I argue that the stories told by those who are dying are both mythic and epic in scope and are nothing less than works of art emanating from a unique source, in this case the dis-integrating body. I will demonstrate that one’s mind can be nothing other than completely involved in and affected by the myriad physiologic changes occurring as one’s body closes down.
An Argument for the Epic Nature of End-of-Life Narratives
In his book, Descent from Heaven, Yale University Professor Thomas Greene explains that all action in the epic genre takes place in a particular setting and that the setting itself has agency on the action (11). He terms these background themes arch-images. In the same way that the storm in Homer’s Odyssey affects the action of the story or the Trojan War affects the action of the Iliad, the arch-image is “the epic image in which scenery and symbol merge” (11). Greene explains that in the epic genre:
[T]he characters, rather than remaining outside [the arch-image], are contained by it, help to define it, and indeed to comprise it. The arch-image becomes inseparable from the action it contains. The experience of whoever moves through it colors the image just as the image controls the experience. (11)
The physiologic process of dying creates such an arch-image within which one’s individual life trajectory comes to an end. Yet, while the terrain is shaped and defined to some extent by the location of the individual traveling through it (e.g. a hospital or a home), as well as by those individuals who accompany the dying individual on this journey, indeed, the dying individual and his or her entourage are being shaped in some way by the terrain through which he or she is traveling.
In her introduction to The Epic Cosmos, Founding Fellow of the Dallas Institute of Humanities and Culture Louise Cowan writes:
If the determining form of a work is, as I am arguing, an inner disposition, there can be no prescribed structure for it, no privileged medium, nor any preferred external characteristics. In this sense, genre is not a logical category but an ontological image, a state of being, an ideal topography. Furthermore, one ought to be able to recognize it, as a world that one has stepped into in entering any literary work of art - and to find the recognition of the territory an aid rather than a hindrance to interpretation. (3a)
There is a reciprocity to the journey and this study explores and illuminates what informs and impacts the arch-image of dying in twenty-first century America. I argue, as Cowan does, that as with any work of narrative art, the recurring mythic and epic themes inform and aid those seeking to understand the twilight of life. There is much individuality in this journey, yet at the depth psychological level, this study shows that the time of dying has remained essentially unchanged for millennia and is, by nature, universal.
The Importance of this Study
In his work, The Psychology of Death, psychologist Robert Kastenbaum writes of the important role of psychological processes in dying:
It is true that perception, cognition, motivation, instrumental and expressive behavior, and interpersonal relations have been subjected to increasingly refined investigation. But the relationship of these processes and of ‘the whole person’ to death has seldom been considered. (1)
People living and dying in the United States in the twenty-first century include a wide range of culturally diverse individuals. Indeed, data released in 2009 by The Hospice Foundation of America enumerates that in 2008 there were 46.7 million Hispanics living in the U.S., 41.1 million black residents, and 15.5 million Asians. These figures do not include the Muslim population or other religious and spiritual traditions that one is likely to find in this incredibly diverse land.
There is no doubt that minority populations are under-represented in literature and will likely be under-represented in this work. Acknowledging that I am not within a minority community should make it clear that this study has limitations; my perspective as well as access to translations is limited by my own shortcomings. To address this problem, this project will incorporate the writings of those whose work has been presented and discussed in the sixteenth annual Living With Grief ® teleconference presented by Hospice Foundation of America, the topic of which was Diversity and End-of-Life Care (April 30, 2009).
At no time in human history has the need for understanding “the other” been so urgent. Fear and aggression have, in many instances, become the rule of law. But death and the religious practices which surround it have been a part of our shared humanity for millennia. Witness the Christmas Truce held on 24 December 1914, on a German battlefield in the midst of World War I. Although the truce was to honor the shared Christian holiday, it was a time when the opposing troops were able to give their fallen comrades a decent and respectful burial, even in the midst of war. This moment brings to mind the sacred text of the Bhagavad Gita - the importance of the pause before war and the importance of proper rituals attending the end of life. If only a small bit of understanding of America’s global neighbors emerges from this work, then I will consider my research to have been a success.
Review of the Literature
Scholarly discussion regarding end-of-life narrative is scattered throughout several disciplines. This section includes academic scholarship from the natural sciences (e.g. medical literature) and the social sciences (e.g. philosophy, sociology, and psychology); distinctions between these fields blurs at the edges. Sherwin Nuland is a surgeon and a historian of medicine who has authored several books. Alan Mermann is both a physician and a minister. And of course, both Freud and Jung were both physicians and patriarchs of the fields of psychiatry and psychology. Although each field is considered to be a distinct area, an interdisciplinary approach to the study of dying is necessary to satisfactorily explain the many different voices involved in end-of-life dialogue.
Medical literature. During medical training, clinicians are taught to pay close attention to a patient’s history. We are taught that 85% of the diagnosis can be made from the history alone. Yet, in current medical practice, there is little time allotted for careful and attentive history taking. In his book How Doctors Think (2007), Chair of the Department of Medicine at Harvard University Jerome Groopman writes, “Most doctors, within the first 18 seconds of seeing a patient, will interrupt him telling his story and also generate an idea in his mind [of] what's wrong”(17). Groopman argues that little can be learned from the patient when a clinician listens in this fashion (17).When the dying process occurs over time, rather than traumatically, the medical world is given the opportunity to study the particular nature of stories which emerge from actively dying patients.
Writing in the late 1960s, psychiatrist Elisabeth Kübler-Ross was a pioneer in the field of listening to the words of dying patients. Working in the Department of Psychiatry at the University of Chicago Billings Hospital, Kübler-Ross is among the earliest physicians to highlight the needs of the patients in the time of dying as being unique and specific to that time of life. In the preface to her seminal work, On Death and Dying, she writes of her extensive engagement with dying patients. Her work, she explains,
is simply an account of a new and challenging opportunity to refocus on the patient as a human being, to include him in dialogues, to learn from him the strengths and weaknesses of our hospital management of the patient. (i)
This extraordinary statement implies how far the world of Westernized medicine had moved away from a patient-centered ethic by the mid-1960s.
Kübler-Ross challenges the medical profession to let the patient be “our teacher so that we may learn more about the final stages of life with all its anxieties, fears, and hopes” (i). The work of Kübler-Ross is considered by many to be foundational in the work of end-of-life care. Her studies drew a great deal of lay public as well as medical attention.
As confounding as it may be for many to conceive, by the mid-1960s in the United States, it was indeed a radical notion in the medical world that the narrative of the patient was a necessary component of quality medical care. It was Kübler-Ross who began to bring into relief the universality of emotions and feelings she found to be present in both the dying individual and those traveling the landscape accompanying the dying person. She describes five stages of dying: denial and isolation, anger, bargaining, depression, and acceptance (38-137). In her work, she wrote extensively about the hope displayed by these patients and the important role of the patient’s family in the dying process. Throughout her work, Kübler-Ross highlighted the importance of listening to the narratives of the patient.
Rita Charon, Professor of Clinical Medicine and Director of the Program in Narrative Medicine at the College of Physicians and Surgeons of Columbia University, writes, “By telling stories to ourselves and others - in dreams, in diaries, in friendships, in marriages, in therapy sessions - we grow slowly not only to know who we are but also to become who we are” (vii). Charon holds a medical degree from Harvard University and a PhD in English and Comparative Literature from Columbia University. In her book Narrative Medicine: Honoring the Stories of Illness, Charon describes Narrative Medicine as “medicine practiced with the narrative competence to recognize, absorb, interpret, and be moved by the stories of illness” (vii). For over two decades, Charon has lectured, taught, and written extensively on the relationship between literature and the practice of medicine. She explains:
Ultimately, narrative medicine may offer promise as a means to bridge the current divides between doctors and patients, between doctors and doctors, between doctors and themselves, illuminating the common journeys upon which we all are embarked. (viii)
The Department of Narrative Medicine is unique to Columbia University; however, the trend towards teaching physicians to listen more carefully to the narrative of patients is the essential focus of the work of physician Rachel Naomi Remen. Remen began her career as a pediatrician at Stanford Hospital. Currently, Remen is a Clinical Professor of Family and Community Medicine at the University of California San Francisco School of Medicine and co-founder and director of the Commonweal Cancer Help Program, a program which focuses on the healing nature of sharing one’s stories during illness. In the 1960s, Remen worked extensively with mythologist Joseph Campbell, and later created a medical school curriculum entitled “The Healer’s Art,” a fifteen hour long course directed and taught by Remen to first and second year medical students. The course has several course goals, including the following:
Trust the power of listening and presence to heal others.
Develop greater comfort with death and the death beliefs of patients.
Develop an expanded definition of death. (“The Healer’s Art”)
Objectives include:
Experience the power of listening and being listened to.
Share their unanswered and unanswerable questions about death.
Learn skills of grieving loss.
Recognize the power of death to clarify life values.
Identify personal qualities that serve dying patients.
Expand ideas about the physician's role in the area of death. (“The Healer’s Art”)
Originally created and taught in 1993, this course is now integrated into the curricula of over sixty medical schools around the world. In her article “A Revolution in Health Care,” published in July of 1999 in Shambala Sun, Remen writes:
For the past hundred years the goal of health care has been the curing of the body. Restoring the concept of healing to the heart of health care is no small thing. It requires rethinking the assumptions on which medical relationships are based, rethinking the goals of every health care interaction. It will require a revolution. (24)
Remen runs bi-annual workshops for medical clinicians with the intention of introducing the participants to the importance of the healing qualities of what Remen calls generous listening: “Generous listeners engage in conversation with an attitude of curiosity and attentiveness and are able to listen in a non-judgmental fashion. Doing so creates a space in which trust and openness of dialogue are encouraged to emerge” (“Listening Generously”)
On June 5-7, 2008, I had the good fortune to attend a workshop designed for clinicians with Remen titled “The Healing Power of Story: Opening to a Deeper Human Connection.” In a personal discussion of this project, Remen suggested that perhaps the soma of the individual becomes more transparent as one is dying, thus making the expressions of the psyche more visible.
In 1994 Sherwin Nuland, medical historian, surgeon, and professor at Yale University School of Medicine, published his book, How We Die: Reflections on Life’s Final Chapter. As noted on the book jacket, in this work Nuland “offers a portrait of the experience of dying that makes clear the choices that can be made to allow each of us his or her own death.” Nuland writes: “The greatest dignity to be found in death is the dignity of the life that preceded it. This is a form of hope we can all achieve, and it is the most abiding of all. Hope resides in the meaning of what our lives have been” (242). From Nuland’s work, it is clear that both hope and dignity are essential aspects of the depth psychological themes integral to the landscape of dying. Nuland further attests:
“A promise we can keep and a hope we can give is the certainty that no man or woman will be left to die alone” (243). Loneliness is yet another one of the many emotions which adorns the landscape of dying.
The work of physician-researchers Allan Schore, Daniel Siegel, and their colleagues at the Mindful Awareness Research Center, based at the University of California, Los Angeles Medical Center, have made major strides in scientifically demonstrating the connection between the workings of the brain and the mind of the individual. Although this connection may seem self-evident, to date there has been a paucity of scientific support for this notion. Using arguments based in the embryonic development of the human brain and utilizing the most modern of medical techniques (e.g. functional magnetic resonance imaging2) these researchers have been able to identify the role of life experience as it affects the development of the brain and thus the mind in an individual.
In his work, The Mindful Brain, Seigel explains:
‘Experience’ for the nervous system involves the activation of neural firing in response to a stimulus. When neurons become active, their connections to each other grow and supportive cells and vasculature proliferate. This is how experience shapes neuronal structure. (30)
This work is indeed groundbreaking in that these researchers have found academically valid and scientific proof to support Freud’s contention that a mind/body connection exists throughout the body at a neuronal level. Seigel writes of a neuronal3 plasticity which exists in the brain, the ability of the neuronal structure of the brain to change in some fashion relative to one’s bodily experience. His work supports the notion that the experience of living in a dying body exerts a neuronal influence on the brain and thus the mind of the dying individual. This runs parallel with my argument that the stories that emerge from the dying body are necessarily unique in that the stories emerge from a dying corpus.
Twentieth-century author Alan Mermann practiced as a physician for decades before becoming an ordained minister and chaplain to the Yale University School of Medicine. Published in 1999, Mermann’s book, To Do No Harm: Learning to Care for the Seriously Ill, bridged the gap between the detached concern taught to medical students and the importance of spiritual engagement in the care of the seriously ill patient. Mermann writes, “During this past decade, questions about how we die increased dramatically. A topic considered taboo since the Victorian Age is now a subject of open discussion, theological pronouncement, ethical argument, and legislative debate” (9). Although it is clear that the discussion of dying has begun to enter into many circles, it is the experience of this researcher that there exists a cultural and universal resistance to entering into discussions about death and dying. Kübler-Ross and others address the prevalence of this resistance in Western culture. Cultural resistance is undoubtedly present in the arch-image landscape that defines the terrain of the dying.
Mermann explains that for the physician/patient dyad to work successfully, the two must understand the patient’s frame of reference (12). In a medical article entitled “Reassurance,” psychiatrist Neill Kessel claims: “The patient’s terms of reference embody what he is actually going through and he will not be reassured unless he believes that the doctor is sensitive to, and understands, that” (“Reassurance” 1128, 1131). From this statement, one can add the theme of “being heard” to the list of mythic and epic themes which wallpaper the space-time of the dying vessel.
Thus far, the themes which can be shown to emerge from the field of medicine include the healing nature of telling one’s stories and having one’s stories be heard, as highlighted by Charon, Remen, and Mermann. The experiences of anger, isolation, denial, bargaining, depression, acceptance of one’s own fate, hope, cultural resistance to discussions of death, and relationships to others (e.g. family, community, clinician) are each discussed in the work of Kübler-Ross and Nuland. The importance of respect for the dignity of the patient in the time of dying is especially highlighted in the work of Nuland.
Social Science literature. Sociologists Barney Glaser and Anselm Strauss’s book, Awareness of Dying, was originally published in the 1960s and re-released in 2005. While the medical community confronts death in a very personal way on a daily basis, Glaser and Strauss write:
American perspectives on death seem strangely paradoxical. Our newspapers confront the brutal fact of death directly, from the front page headlines to the back page funeral announcements. Americans seem capable of accepting death as an everyday affair - someone is always dying somewhere, frequently under most unhappy circumstances. (3)
Although seemingly aware of death, there is a palpable hesitancy among Americans to discuss death or to actively plan for the inevitability of one’s own death, and indeed the topic is often considered taboo. Glaser and Strauss believe, “Americans are characteristically unwilling to talk openly about the process of dying itself; and they are prone to avoid telling a dying person that he is dying” (3). This unwillingness is intertwined in the medical care of the dying patient. Nuland explains:
Of the many ways to die alone, the most comfortless and solitary must surely take place when the knowledge of death’s certainty is withheld. Here again, it is the “I couldn’t take away his hope” attitude that is so often precisely how a particularly reassuring form of hope is never allowed to materialize. (243)
Nuland argues passionately for the importance of telling the dying patient that he or she is dying, yet the prevailing mythos feeds the taboo. Others in the medical field disagree as to whether or not to tell the dying patient of his or her imminent demise. Whether or not the patient is informed of or is indeed consciously aware of this imminence is not the subject of this project. Nuland asserts that left unaware of our own dying condition, “we cannot share any sort of final consummation with those who love us” (243). “Without this consummation,” he argues, “no matter their presence at the hour of passing, we will remain unattended and isolated” (243).
As mentioned in the writing of physiologist Joseph Engelberg, most people can tell the difference between the four stages of healthy, ill, dying, and dead. Glaser and Strauss explain that the hesitancy around telling a patient that he or she is dying is, at least in part, “a moral attitude: life is preferable to whatever may follow it, and one should not look forward to death unless he is in great pain” (3). Unwillingness to discuss death can be quite problematic for the patient or the family of the dying patient. Glaser and Strauss highlight the lacuna as emanating from the training of medical students. “Medical students,” they write,
Learn to not kill patients through error, and to save patients’ lives through diagnosis and treatment, but their teachers emphasize very little, or not at all, how to talk with dying patients, how - or whether - to disclose an impending death or even how to approach the subject with the wives, children and parents of dying patients. (4)
In his book review of “Awareness of Dying,” published in 1966 in The Annals of the American Academy of Political and Social Science, Leonard Reissman, professor of sociology at Tulane University, writes:
In the Preface, the authors report: “A group of eminent physicians hearing of our analysis before its actual publication . . . remarked flatly that sociologists have nothing useful to offer physicians.” After reading this book, I must agree with the physicians. (202)
How extraordinary that in the second half of the twentieth century in America, engagement with dying process has been so completely relegated to the medical world. Given the somewhat obvious statement that death and the time of dying affects everyone in all walks of life, it is extraordinarily narrow-minded to insist that the work of caring for or assisting fellow humans through their dying processes be limited to trained medical professionals. Indeed, many literary examples describe many individuals from all walks of life caring for the dying. Reissman concludes his critique as follows:
The authors obviously are dedicated and serious sociologists who are concerned with developing guides for those professionals who are regularly involved in living with the dying. Dedication, alas, is not enough. (203)
In 1972, Sociologists Richard Dumont and Dennis Foss waded into the discussion regarding the American way of dying. Although their work was done over thirty years ago, little has changed since they published their observations in their book, The American View of Death: Acceptance or Denial. They write:
Twentieth century man prides himself on his ability to control his world; while he has exhibited substantial mastery over his physical and social environments, he cannot control his own death. True, he is currently able to delay it and to reduce its misery, but all of his cleverness and ingenuity have thus far been of no avail in eliminating it.(1)
Dumont and Foss continue: “The taboo on death conversation may be due in part to the somewhat superstitious feeling or belief that if we do not talk about something, it does not exist” (36). This book focuses a great deal of attention on the American denial of death and the many behaviors in society which attempt to make death and the dying process invisible to the living (37).
Fortunately, by the conclusion of the twentieth century, many scholarly fields felt compelled to add their voices to the discussion of end-of-life care. University of Calgary sociologist Arthur Frank authored several books on the subjects of illness and medicine. In his work The Wounded Storyteller, published in 1997, Frank explains that it is his goal to “shift the dominant cultural conception of illness away from passivity - the ill person as ‘victim of’ disease and then recipient of care - toward activity” (xi). He continues, “The emphasis of contemporary writing is less on the wounded storyteller than on the complementary figure of the wounded healer” (xi).
Frank turns away from the traditional focus of clinician as healer:
As wounded, people may be cared for, but as storytellers, they care for others. The ill, and all those who suffer, can also be healers. Their injuries become the source of the potency of their stories. (xii)
Charon highlights the role of the physician in the healing process; Frank turns that idea around and stresses the healing of the caretaker by the patient: “Because stories can heal, the wounded healer and the wounded storyteller are not separate, but are different aspects of the same figure” (xii).
Through the image of the wounded healer and storyteller, the relationship between the dying storyteller and listener can be seen as an embodied yin/yang. Although the body of the dying storyteller is in a passive, or yin posture (often impaired in his or her mobility in this phase of life), the storying faculties of the patient can be quite active, or yang. The listener enters into the room exhibiting a yang aspect of mobility, yet as the listener he or she enters into yin, a passive and receptive posture that allows the listener to receive the stories of the other. Together, there is a deeply profound reciprocity that develops in this relationship. The dying individual is complete in living both a yin and yang aspect, while the listener is able to experience both as well. Indeed, I feel that together they create yet a third yin/yang relationship - the relationship between the story listener and the story teller.
Frank begins his book with a quote from Judith Zaruches, a woman who suffered with Chronic Fatigue Syndrome. She says, “The destination and map I had used to navigate before were no longer useful” (Zaruches, qtd. in Frank 1). Frank goes on to write, “Serious illness is a loss of the ‘destination and map’ that had previously guided the ill person’s life” (1). He claims, “Stories are a way of redrawing maps and finding new destinations” (53). I would venture to say that the terrain of dying is indeed a time when dying individuals have lost their maps. The goal of this study is to provide a generic map of the terrain of dying - a map that is as basic as any road map might be. I argue that, although one may travel the road towards death in fair or stormy weather, the essential aspects of the landscape have remained unchanged since the dawn of time.
Frank writes, “The voice speaks the mind and expresses the spirit, but it is also a physical organ of the body. The mystery of illness stories is their expression of the body: in the silences between the words, the tissues speak” (xii). Frank proposes three types of narratives that emerge from the wounded storyteller. First is the restitution narrative, in which the plot or basic storyline is: “Yesterday I was healthy, today I’m sick, but tomorrow I’ll be healthy again” (77). Frank explains that this type of narrative is filled with “reflexive reminders of what the story is about: health” (77). The second style of narrative that Frank has identified is the chaos narrative. He writes, “Chaos is the opposite of restitution: its plot imagines life never getting better. Stories are chaotic in their absence of narrative order” (97). The chaos narrative is one in which “the body is imprisoned in the frustrated needs of the moment. The person living the chaos story has no distance from her life and no reflective grasp on it. Lived chaos makes reflection, and consequently story-telling impossible” (98). It is easy to imagine the institutionalized dying individual as one so caught up in the chaotic and unfamiliar landscape as to be living in the prison described by Frank.
Lastly, Frank writes of The Quest Narrative:
Quest stories meet suffering head on; they accept illness and seek to use it. Illness is the occasion of a journey that becomes a quest. What is quested for may never be wholly clear, but the quest is defined by the ill person’s belief that something is to be gained through the experience. (115)
The literature of sociology has added Frank’s three narrative styles to the landscape of the dying. Dumont and Foss add the theme of societal fear and the societal taboo regarding discussions of death and dying to the terrain of dying. As the dying individual travels this landscape, he or she interacts with and is changed by the landscape as the landscape interacts with and is changed by the traveler. So, to the themes within which one is dying in modern America, one must add the themes of societal fear and taboos regarding death, as well as Frank’s three narrative styles.
Depth Psychology literature. Sigmund Freud, a pioneer in the field of depth psychology, was a neurologist with extensive training in biology and physiology prior to focusing on the workings of the human mind. In his book, The Psychoanalytic Century: Freud’s Legacy for the Future, Director of the International Psychotherapy Institute David Scharff writes, “[Freud’s] theory of the biological basis of mind was first developed in 1895 in the unpublished Project for a Scientific Psychology” (xv). Published as chapter 7 in Freud’s Interpretation of Dreams, Freud claims:
All our psychic activities proceed from (inner or outer) stimuli and terminate in innervations. We thus ascribe to the apparatus a sensible and a motor end; at the sensible end we find a system which receives perceptions, and at the motor end another which opens the locks of motility. (426)
Freud hypothesizes, “[T]he psychic apparatus must be constructed like a reflex apparatus. The reflex act remains the model for every psychic activity” (426). He suggests that all psychic activities have their basis in the neurophysiologic workings of the body. In his work, Beyond the Pleasure Principle, Freud writes of the aim of death as the goal of every living being:
For a long time, perhaps, living substance was thus being constantly created afresh and easily dying, till decisive external influences altered in such a way as to oblige the still surviving substance to diverge ever more widely from its original course of life and to make ever more complicated detours before reaching its aim of death. . . . (38-39)
Freud argues: “What we are left with is the fact that the organism wishes to die only in its own fashion” (39).
In twenty-first century America, in a world where the medical world seeks to isolate and control all aspects of the dying process, one wonders where the instinct to die in one’s own fashion can be found. I argue that the stories told by dying patients are the place in which the patient, who is often immobile and physically at the mercy of others, has the power of psychic expression to die in an individual way - if one is willing to listen to the stories told. In true interdisciplinary fashion, the ability to listen enlists the work of sociology, medicine, and depth psychology to hear and understand the stories being told in this unique physiological state.
Max Schur, Freud’s personal physician and close friend, shared the passionate belief that the body and the psyche are intimately intertwined. In an article published in the American Journal of Psychiatry in 2002, physicians Stephen Wittenberg and Lewis Cohen write that Max Schur’s “pattern was to find opportunity in adversity, explore new areas in psychiatry and medicine, and champion the crucial connectedness of psyche and soma” (216).
C. G. Jung also wrote and argued strongly for the interconnectedness of psyche and spirit to soma. Trained as a psychiatrist, Jung became the founding father of the Jungian school of analytical psychology. Writing extensively in the first half of the twentieth century, Jung explored the mind-body connections in the time of dying in a different way. He states clearly that he believes there to be no other option than for the psyche to be intimately tied in some way to the body. Regarding the inevitable telos of the life trajectory, in his essay entitled “The Soul and Death,” Jung writes:
Life is an energy-process. Like every energy-process, it is in principle irreversible and is therefore directed towards a goal. That goal is a state of rest. In the long run everything that happens is, as it were, no more than the initial disturbance of a perpetual state of rest which forever attempts to re-establish itself. Life is teleology par excellence; it is the intrinsic striving towards a goal, and the living organism is a system of directed aims which seek to fulfill themselves. (CW 8: 798)
Jenny Yates has compiled many of Jung’s writings on death and dying in her work Jung On Death and Immortality. She begins her book with the following quote:
Death is psychologically as important as birth and, like it, is an integral part of life. . . . As a doctor, I make every effort to strengthen the belief in immortality, especially with older patients when such questions come threateningly close. For, seen in correct psychological perspective, death is not an end but a goal. (Jung, qtd. in Yates 3)
Writing in the Foreword to the Marie-Louise von Franz’s book On Dreams & Death, Jungian Analyst Emmanuel Kennedy-Xypolitas explains that Jung believed dreams which emerge from the time of dying are in some way unique in the trajectory of human life:
In 1948, C. G. Jung sketched out a picture of the future development of analytical psychology, which he saw as an attempt to formulate “a scientific psychology” based upon immediate experience with human beings. To the list of possibilities for further investigation, he added the task of collecting and evaluating death dreams, that is, dreams occurring before accidents, illness, and death, as well as during severe illness and narcosis. (vii)
Von Franz explores the dreams of death and dying in her work On Dreams & Death.
In 1978 she published an article in Quadrant titled “Archetypes Surrounding Death.” In this article, von Franz discusses archetypes in the dreams of the dying (e.g. felling of trees and cutting of wheat) which appeared in some way to be predictive of the impending death of the individual. She closes this paper with a dream of her own which she dreamt as she was coming to the end of writing. Von Franz describes that “mist closed in again and you could see no more” (22). She writes:
I feel that that is just what I have tried to convey to you in this paper: just a few glimpses of an utterly unknown country which is covered for us with mist for most of the time as long as we still live in the body, but of which one gets from time to time amazing glimpses. These glimpses seem to confirm Jung’s view that the process of individuation is also a preparation for death and that the latter is not an end but an amazing transformation of some kind. (22)
Jungian analyst Jane Hollister Wheelwright wrote the book Death of a Woman, giving an extensive account of her own psychotherapeutic work done with a woman who was dying of cancer. In the author’s note, Wheelwright explains that her book was based on work she had done with a patient in the early 1960s, yet it was not published until two decades later. Wheelwright opens the book with an explanation of this delay by explaining the nature of the psychologically taboo subject of death in the earlier days within the psychotherapeutic community. She writes, “Only within the last decade has there been a widely recognized effort among psychotherapists to help terminally ill patients face death and to be psychically up to date when they die” (7).
Wheelwright’s work with Sally broke many techniques of conventional psychotherapy (7), and by doing so, Wheelwright was able to enter into a therapeutically healing relationship with her patient in a way that allowed Sally to live to her death, to explore her world from within her dis-integrating body. Wheelwright was able to act, in some ways, as a mythic threshold figure and guide for Sally in the terrain of the dying. As Gilgamesh did for Enkidu, Wheelwright remained emotionally by Sally’s side throughout much of Sally’s dying process. In her book, Wheelwright extensively explores and discusses the depth psychological themes which emerged in Sally’s dreams. These themes will be discussed later in this dissertation, in the chapter on dreams.
In his seminal work, The Psychology of Death, published in 1972, psychologist Robert Kastenbaum explicates the presence of fear in the dying process and the role it plays in the process:
There is reason to believe that important differences exist in the “object” or “stimulus” of death fear. Philosopher Jacques Choron has offered a particularly cogent analysis of death fear and related topics. As a part of this analysis, he distinguishes three types of death fear. One may be afraid of a) what comes after death, b) the “event” of dying, or c) “ceasing to be.” (44)
Kastenbaum continues to reassure his reader: “Of course, one does not really have to choose among these fears; we can have them all, or in any combination” (44). In addition to fear, Kastenbaum adds the themes of death anxiety, sorrowing, overcoming fear and anxiety, and participating to the psychological factors in play when one “faces the thought of death” (101).
Robert Bosnak, in his 1989 work, Christopher’s Dreams: Dreaming with an AIDS Patient, describes in painful detail the embodied dream work that he engaged in with a patient who was diagnosed with AIDS soon after the beginning of the therapeutic relationship. Bosnak gives transcripts of the dreams and discusses them in detail in the work:
In a life threatening illness, the resistance to a direct, stark awareness of one’s condition is often stronger than the ability to remain conscious of what is going on with us emotionally. . . . Dreamwork provides a rare window into the depth of the soul where unacknowledged feelings live their unexamined life, profoundly influencing everything we experience in our day-to-day existence. (vii)
Bosnak describes his book: “It tells the story of a man with a deeply Christian love of God in his heart, at odds with his church, searching for solace and meaning” (viii). The deeply psychological and epic theme of searching for solace and meaning is yet another theme that paints the terrain of the dying.
From Bosnak’s work, one can conclude that there is no question that there is a great deal of insight to be gained from studying the mythemes and epic themes which emerge in the form of story and dream from the dis-integrating body. Bosnak maintains:
Anyone who has followed someone through illness or in their dying days knows that as the spirit goes, so goes the body. In the face of a dangerous illness, strong spirits - not, necessarily, feeling good - are usually a necessary condition for experiencing existence as valuable, and not just as meaningless torture. (viii)
Bosnak stayed by Christopher’s side for as much of the dying process as he was able. Neither Bosnak nor Christopher was traveling this landscape alone. The book is the story of Christopher’s life and his dream world as he traveled the landscape, accompanied by a guide brave enough to stay by his side throughout the journey, towards the inevitable horizon of death. This work will be re-visited in the chapter on dreams of the dying.
Irvin Yalom, MD, Professor Emeritus of Psychiatry at Stanford University, has written extensively on the topic of death and dying. In his book Staring at the Sun: Overcoming the Terror of Death, Yalom argues that
[s]elf-awareness is a supreme gift, a treasure as precious as life. This is what makes us human. But it comes with a costly price: the wound of mortality. Our existence is forever shadowed by the knowledge that we will grow, blossom, and, inevitably, diminish and die. (1)
In their book Myth and the Body, physician Stanley Keleman and mythologist Joseph Campbell speak of the song of the body. Campbell writes: “Mythology is a song. It is a song of the imagination, inspired by the energies of the body” (xiii). Keleman adds:
For me, mythology is the poetics of the body singing about our cellular truth. Myth is a poem of the experience of being embodied and of our somatic journey. It is the song of creation, the genetic experience that has organized a way to sing, to dance, to paint, to tell stories that transmit that experience to others. (xiii)
I argue that the end-of-life narratives which emerge from dying individuals are nothing less than mythopoetic singing, or what Keleman calls the song of creation (xiii), creating an epic cosmos all their own, and deserving of a place of honor and respect in our cultural repository.
This project describes the landscape of the dying, the terrain which we must all travel as our individual lives come to a close. It is my hope that by studying the mythic and epic themes which emerge in end-of-life narratives, the reader will have more information to add to the interdisciplinary discussion regarding the terrain of dying.
Organization of the Study
Beginning with a discussion of the epic nature of end-of-life narratives, chapters are organized in temporal fashion, highlighting the time of dying as it has been imagined in extant literature dating from 2750 BC to the present day. Due to the enormous quantity of material, I have narrowed the project to focus particularly on the themes that inform the time of dying in twenty-first-century America.
-Chapter 2, “Epic Poiesis in the Stories of the Dying,” establishes that the stories told by dying patients are epic in nature, constellating an entire cosmos that is recognizable as belonging to the archetypal realm of dying. To make this argument, I compare and contrast the relationships between stories told by those who are dying and four epic works of fiction: The Odyssey by Homer, Moby Dick by Herman Melville, Beloved by Toni Morrison, and most extensively The Gilgamesh Epic.
-Chapter 3, “Angels, Time, and God: What we can learn from the Abrahamic Faith Traditions,” begins the exploration of ancient stories which more directly inform the time of dying in twenty-first-century America. Through an in-depth analysis of the ancient text The Testament of Abraham, this chapter explores the end of the life of the patriarch of the Old Testament as it was imagined in the first century AD. Abraham is significant in that he is recognized by each of the three Abrahamic faith traditions (Judaism, Christianity, and Islam) as modeling the ideal man. Thus, one can recognize that his dying process informs many of the religious practices carried out in modern day America.
-Chapter 4, “A Study of the Neuroscience of Fear and Compassion: the Landscape of Dying Seen Through a Buddhist Lens,” continues the theme of dying in twenty-first- century America. The very earliest roots of the widespread practice of Buddhism are based in the experiences of the young prince Shakyamuni as he observes aging, disease, and death. This section explores the neuroplastic nature of the brain and demonstrates the ways in which Shakyamuni was able to use meditational techniques to alter his relationship to senescence and death. The next section of this chapter highlights the age- old Japanese tradition of writing poetic verses moments prior to one’s own death. This stylized art form known as jisei has existed for over one thousand years and is widely available in the popular press. A study of jisei gives the modern reader insight into the ways that Japanese culture conceives of and honors the time of dying. The final section of this chapter describes the ways in which the architecture of a traditional hospice building in Branford, Connecticut encourages the acceptance of dying as a natural event. The placement of the building on the seashore and the liberal use of windows in its architecture bathe those who enter in a calm acceptance of the end of life as a natural and beautiful time, an acceptance of death that is inherent in the Buddhist tradition.
-Chapter 5, “End of Life Dreams: An Examination Of The Relationship Between The Sleeping Body, The Dreaming Mind, And The End Of Life,” takes the reader away from the stories of great beings such as Gilgamesh, Abraham, and the Buddha and explores the end-of-life dream experiences of common men and women. This chapter establishes the fact that human physiology has remained essentially unchanged since the earliest extant dream recordings and contends that there is value to be found in explication of end of life dreams ranging from antiquity through to modernity. Through the study and comparison of thirty end-of-life dreams, this chapter identifies imagistic and interactional themes which are unique to end-of-life dreams.
-Chapter 6, “The Voices of Children,” uses the story of a young boy dying of leukemia in a midwestern hospital in 1975 to demonstrate the reciprocity between a child’s physiology and his experiences and emotions. This chapter closes the project by reminding the reader that our society has a long way to go to improve end-of-life care for terminally ill children.
A Brief Restatement of the Problem
A great deal of medical and social science research focuses on the healing nature of narrative during illness. Physicians explain to other physicians how they might become better listeners in order to provide better medical care. Caregivers explain to other caregivers how they might provide more comfort when dealing with the chronically ill and dying. Religious literature focuses on passing on religious wisdom that might otherwise be lost to future generations. Each of these disciplines is an aspect of caretaking the dying, caretaking the caretaker, and caretaking religious traditions. Although each of these fields captures an important aspect of the dying process, there continues to be a paucity of interdisciplinary literature focusing on the act of narration during the time of dying. Using mythic and epic themes, this study seeks to elucidate the depth psychological nature of the narrative which emerges at the end of life. I argue that a study of the creative narrative process, the process of myth making which emerges from the dying patient lends significant insight into this enigmatic time of life and that illuminating the twilight of life in this fashion will improve end-of-life care as it is experienced in our society.
Discussion
It is my experience that clinicians write for clinicians, and the bereaved write for the bereaved - each writing as though the dying person were merely a passive participant in the process of his or her own dying. Although inactivity may accurately describe the state of the body at this time of life, I argue that the psychological process in the dying person may be quite active and is able to find expression in the narrative process. I argue that a study of the narrative poiesis which emerges from the dying patient lends significant insight into this enigmatic time of life and that illuminating the twilight of life in this fashion will improve end-of-life care as it is experienced in our society.
Chapter 2
Epic Poiesis in the Stories of the Dying
So, I must go beyond this natural faculty [bodily life] of mine, as I rise by stages towards the God who made me. The next stage is memory, which is like a great field or a spacious palace, a storehouse for countless images of all kinds which are conveyed to it by the senses. In it are stored away all the thoughts by which we enlarge upon or diminish or modify in anyway the perceptions at which we arrive through the senses, and it also contains anything else that has been entrusted to it for safe keeping, until such time as these things are swallowed up and buried in forgetfulness.
- St. Augustine, Confessions
Each week, I have the honor and the privilege of going to a local hospice to spend an afternoon. Although my medical background is woven into the fabric of my being, my role at the hospice is not that of a medical caregiver. My role there is officially a researcher and story listener. What I do in that afternoon is listen to and record the stories of the dying. The stories are recorded digitally, compact discs are created which contain the stories, and the finished product is then returned to the patient and his or her family. Regardless of the background of the patient, in our time together the patient becomes a storyteller and I a rapt listener.
Each story from hospice is a poetic expression of the life of individuals as they look back and re-member themselves. Often, the story told is of the person they once were, the person they were before the day when they learned that their life would soon draw to a close. The epic poiesis of the human mind is strongly in evidence as these people weave their stories into the world, and in doing so, re-weave themselves into their own memories as well.
Umberto Eco, in his book, Six Walks in The Fictional Woods, writes of the charm and value of taking the time to linger in “the fictional woods”:
There are two ways of walking through a wood. The first is to try one or several routes (so as to get out of the wood as fast as possible […]; the second is to walk so as to discover what the wood is like and find out why some paths are accessible and others are not. (27)