2nd Global Conference
The End of Life Experience
Dying, Death and Culture in the 21st Century
Saturday 13th April 2019 – Sunday 14th April 2019
ABSTRACT AND PAPERS
The Hidden History of Dying in the West
-no abstract available-
Being with the Dying: Taking Off our Coat(s) Before Entering the Room
King’s University College
wonder, palliative care, presence, attention, clinical practice wisdom
When we first begin working in end of life care we are alert, present, fearful of making a mistake, or misunderstanding something that is central to the lifeworld of the dying individual, their family and friends. We are often struck with wonder at the beauty of the moments we are privy to in palliative care, times of sacrifice, deep abiding love and even conflicts that arise at the bedside. Our work is all new, endlessly fascinating and frequently fills us with awe.
As time goes by and life intervenes, politics in the workplace become more apparent, the stress of balancing a caseload with administrative duties, the complete engagement of those early days can wane. We may enter the person’s room with many conflicting responsibilities and worries, both professional and personal, that draw us away from giving our full attention, finding wonder and using it clinically like we did as new graduates. We often fail to add elements of wonder and beginner’s mind to our growing practice wisdom in ways that would complement our empathy, compassion, and ability to connect deeply at this critical juncture in peoples’ lives.
This presentation will examine wonder in the clinical encounter, stepping in to each room with a renewed sense of the sacredness of our involvement and offer ways to rekindle professional wonder. We will discuss being fully present, grounding, self-care, mindfulness, and ways of leaving other concerns and prejudices at the door before entering the persons’ room. We will elicit from the participants ways they rekindle wonder day to day and offer other methods to add to their professional toolkit in order to offer exemplary palliative care. We will invite people to take their personal and professional coats off.
Death Becomes You
Academic College of Tel Aviv-Yafo
Health systems, medical psychology, disenfranchised grief
The lecture will focus on the experience of psychologists working in health care systems encountering death loss and grief daily until death becomes them. I will describe the relatively small body of knowledge on psychologists experience and aim to formulate their experience as disenfranchised grief (Doka, 1989; Kouriatis & Bown 2011; 2013). I aim to elaborate on the forces shaping the psychologist’s experience of disenfranchisement using examples from my own personal experience. First of all he is alone with a patient, using his own personal coping mechanism and facing challenges to his sense of competence, hope and compassion fatigue. Secondly, working as a psychologist in a medical setting creates an environment in which there is little time and space to process these losses and share with others. And thirdly, and professional norms and training curriculum are often ambivalent addressing these aspects. Accordingly I will suggest an integrative theoretical working model taking into account these aspects aimed to help psychologist throughout their professional course. Highlighting the need to create institutional formal spaces aimed to facilitating enfranchisement for psychologists (Adelman & Malawist, 2013; Attig, 2004). This may help increase psychologists’ ability to move away and towards death and loss in medical settings.
Bettering End Life Experiences through Design
Bern University of the Arts
Every day we read, see and hear about death and yet the reality of dying is so strange to us. We don’t ‘do’ death any more. The experience of death has been left out of our lives to the point that most people may not even encounter a dead body until they are in their late-middle age. When a loved one is dying, we feel lost and helpless. We find ourselves in a situation unknown to us and this often in an unfamiliar setting. What is expected of me? How can I help the dying person and how can I also help myself in this situation?
Often a taboo subject in past decades, death has recently become a subject of interest not only for the public but for designers. Therefore the question is, how can design improve the support during the end of life. In the last few months, weeks, days of people’s lives, design can have an important role in improving the quality of life of any aspects of daily life.
How can I as a designer help to cover the needs of the dying and their relatives in end of life care. How can design contribute to deal with these sensitive situations? How can it help relatives find a way to connect with their loved ones and care for them? The goal is to improve the quality of life at the end of life.
In the proposed workshop the participants are invited to image a world in which death and dying have become as normal in our lives as birth. The beginning of life is present everywhere, in shops and in society in general. Products for the newborn and the hospital maternity wards represent colourful and cheerful objects and spaces respectively. In contrast, the end of life finds scarce representation.
Participants of the workshop will look at products for death and analyse and discuss their design. By applying design methods they will envision alternative products and services, which improve the quality of life at the end of life.
Design for End of Life Lab
Medical technology, due to its increasing power to prolong life, obliges us to be pro-active in deciding how we want to die. How do we envision the final stage of our life: are we going to fight to extend our lives as much as possible? Or are we going to choose for quality over quantity in the final stage of our life?
Palliative care, and hospice care, acknowledge death and dying as an integrated, meaningful part of life. Care in the final stage of life is concerned with providing comfort in the different domains of care: the physical, the social, the emotional and the existential. The care aims to support patients to live a life worth living to the end.
However, addressing mortality, death and dying in care as well as in individual private lives, is a difficult task; In professional as in personal settings, we tend to avoid the subject. Due to this ‘taboo’, we often don’t live the last stage of our lives the way we would have wanted to. Moreover, ‘a good death’ implies a good communication between all those involved, which is often not the case.
Design can play a powerful role in improving the quality of death and dying, by developing interventions in the different domains of palliative care: providing physical comfort for patients, taking care of, and facilitating the social interactions that matter, taking care of the emotional well being and supporting people in addressing the existential aspects of their life. Next, Design can be a powerful means to support the caregivers in the demanding task of taking care of the dying, and to facilitate the discussion about the desired Quality of life in its final stage.
Due to the potential of Design for the End-of-Life care, the Delft Design for End Life Lab was developed. In this lab design students and design researches join forces to explore how design can contribute to the quality of death and dying, thereby to the quality of life in its final stage.
Dead Souls Symbology as the Discursive Construction of Memory in Barnes and Gogol
University of Lisbon
Gogol, Barnes, Memory, Soul, Life, Death, Literary Representation
In his letter to Pletnyov (1842), Gogol reported the censor’s opinion, regarding Dead Souls, as follows: “After this, not a single foreigner will come to visit us”. Since the soul is immortal, there can be no such thing as a dead soul, moreover with the price set on it. Curiously, such a disturbing literary scenario, performed in Dead Souls, has been thoroughly revisited in Julian Barnes’s novel The Noise of Time (2016), in which the symbology of a dead soul is directly connected with one who lives, remembers and is only at the start of his remembering. Paying tribute to Pushkin’s idea of a long poem, Gogol’s mastery in conceiving Dead Souls lies in his strategic mixture of seemingly incompatible styles and literary genres. Resting upon carefully depicted juxtaposition of unrelated phenomena, such as death and a living soul, this poem pursues a density of texture, a complexity of structure, and a variety of narrative techniques that give it a rather novelistic feel. Shaking generic boundaries, Gogol incorporates an impressive thematic ambivalence into stylistic representation of a “fully living human being” (Gogol,1847), in Dead Souls, in this way: “…what was all this dead souls nonsense, anyway? There was no logic in dead souls, how could one buy dead souls? Was anyone fool enough to do so?” (191). Writing about Shostakovich, Barnes regards an equally ambivalent theme, the death of the soul, as a central narrative device in depicting his main character’s inner dilemma. This dilemma is based on Pushkin’s philosophical inquiry if genius and evil can really coexist. This paper aims to explore the existing intertextual connection between Gogol’s dead souls and Barnes’s death of the soul, in order to show how death symbology may contribute to the discursive construction of memory process in English and Russian literatures and cultures.
“Unveiling the Corpse in the 21 st Century”
Postmortem photography, death, Sally Mann, decomposition, body farm, corpse
Twenty-first-century Western culture finds itself in the midst of a paradigm shift regarding social attitudes toward death. Where better to gauge this shift than art – that timeless barometer of social and cultural upheaval and understanding? Sixty years ago, representing death was considered problematic and attitudes toward death had changed so radically over the centuries that the previously social and public event had become, by the mid-20th century, an exceedingly anti-social and private experience. The work of American photographer, Sally Mann, which is explored in this paper, provides a measure of insight into the fragile relationship between visual culture and mortality.
Mass media consumption in the 20th century decoupled representation from reality – perhaps even the corpse from the body – and culminated in what Hans Belting has observed in the 21st century: “Though our image consumption today has increased to an unprecedented degree, our experience with images of the dead has lost its former importance altogether.” Working outside this image overload pathology are a number of contemporary artists exploring their own relationships between the corpse, mourning, loss and denial, on the one hand, and art practice, aesthetics and public presentation on the other. The photographs of corpses by Sally Mann, for example, offer personal approaches and insights into our changing journey to the end. The viewers ‘exhume’ their own meanings from the images discussed in the paper, recognizing an emerging twenty-first-century attitude toward death and acknowledging Julia Kristeva’s words, “But what use is art if it can’t help us look death in the face.”
Kotodama Applications for End of Life
Shintaido of America
The use of sound combined with body movement crosses all cultures, languages and religions to provide a physical means for spiritual growth that for end of life purpose can provide a way to express grief and connection with the deceased. When the voice is added in Japanese martial arts such as Shintaido, the sound can be a spiritual basis for teaching. The Japanese word for sacred sound or word spirit is Kotodama. The Japanese belief system is that mystical powers dwell in words or names and that ritual word usages can influence our environment. The Japanese martial arts body movement is Tenshingoso, with specific attention to the sounds “Ooo”, “Uumm”, and “Aaa”. This presentation will bring the results many years of weekly practice and instruction for use in celebrations of life.
Dyalogues & Wishes
Game, Embrace mortality, Live fully, Stay in control, Conversation, Wishes
We know that sharing what we love with the people we love is one of the greatest joys in life, We also know that when things get hard, figuring out how to talk about what matters most in life, gets even harder. Declaring what is most important to us while we are well, gives us the best opportunity to live life fully. What is essential becomes magnified and everything else begins to melt away. We invite you to contemplate, articulate and realize your vision of the life you wish to live now and though your final exhale. Join us for an entertaining and interactive session, where you’re invited to learn how to play a game of a lifetime for a lifetime. A game designed to start a conversation exploring what matters most in life, uniquely simple and powerful. Leave inspired and empowered to continue these meaningful and life-changing conversations with family, community and health-care providers, now and well into the future.
During this 60 minute interactive presentation, participants discover how easy it can be to engage in end-of-life conversations. Our format revolves around storytelling and game playing. The stories work to highlight the importance of having “the conversation” before it’s too late. The game playing helps participants begin to contemplate and articulate their end-of-life-care wishes. (And because life is dynamic, no matter how many times the game is played, it is never the same.) This special workshop is designed to help eliminate the fear, uncertainty, regret, and avoidance, so often associated with navigating end-of-life conversions, and to connect people with what matters most to them now and to each other.
Tools and resources to continue the conversation with loved ones, medical providers, and other critical advisers are provided.
Charlie Gard, Alfie Evans and Jahi McMath: What, if Anything, Do We Need to Learn from these Deaths? Perinatal End of Life Care
Montefiore Medical Center, NY
In December 2013, thirteen year old Jahi McMath underwent elective surgery to correct a sleep apnea condition. The surgery was completed without incident. In the post anesthesia care unit, the girl awakened, talked and laughed with her mother and grandmother. She was later transferred to a surgical unit for routine post-operative care. At some point she coughed. The coughing triggered post-operative hemorrhaging that quickly devolved into a medical emergency during which time frame she became anoxic for a period of time such that she sustained severe brain damage. Within days, she was diagnosed by various pediatric neurologists as brain dead. She was pronounced dead and a death certificate was issued. Her family refused to accept this diagnosis. They refused to remove her from life support or to permit others to do so. Court interventions, news and social media exposure ensued. The girl was transferred clandestinely from California to a private hospital in New Jersey and then to a private apartment not far from the hospital where she languished for 4 years succumbing irretrievably on June 22, 2018. What should have been from the outset in these difficult but straightforward medical cases became medical, management, ethical, legal and political fiascos fueled by a social media frenzy. This paper tackles the issue of the best interest of the child standard in chronic care environments by examining technologies and interventions that become hindrances rather than facilitators of contemporary patient care management through a comparison of events pertaining to McMath, Evans and Gard.
Ending Life on One’s Own Terms: Kelly Johnson’s Story
Kelly Johnson spent the last 40 years of his life working, playing, dancing and making music in his third floor walk-up apartment on San Francisco’s busy Fillmore Street. The locals all knew him; most joined him regularly or occasionally for coffee at the Peet’s a half-block away.
As a child Johnson performed with his sister on the vaudeville circuit, as a tap dancer and contortionist. In the 1960s he moved to California and started the San Francisco Dance Theater on Fillmore. His career would later include stints as executive director of the Berkeley Symphony, as a concert pianist and composer. This lively existence colored his outlook as he faced life’s end.
Pulmonary disease and severe arthritis overtook Johnson in his early seventies. “I reached a point where people were coming and dragging me down to Peet’s,” he said. “There was nothing left of me. I got about three or four steps from my house and I just wanted to die. I wanted it to be over.”
Johnson turned to California’s End of Life Options Act, which went into effect in 2016. Under that law, a terminally ill adult may request life-ending drugs from his physician. There are extensive restrictions: no physician is required to participate; the individual must be mentally competent, and must make several written advance notifications; the medications must be self-administered.
Local newspaper editor Thomas Reynolds, a longtime friend, arranged for a professional videographer to accompany Johnson in his final weeks. The resulting documentary, “A Dance With Death,” premiered at the theater across from Johnson’s apartment in the spring of 2018 and has since been shown at several festivals. My presentation will include the showing of a 13-minute clip from the film, followed by a discussion of questions raised.
Learning from seasickness on the journey from life towards death
Julia Rose Lewis
Interdisciplinary, medical humanities, palliative care, hospice, poetry
Ghazal Mosadeq’s Supernatural Remedies for Fatal Seasickness; Highly indivisible but nevertheless in nineteen sections (GAnG PrESS 2018), offers an extended metaphor for the experience of hospice care. Attending to death, requires that the patient and carer learn to communicate in new languages; they will need to make clear their wishes using the unfamiliar diction and syntax of medical discourse. They will be haunted by their partial understanding of these languages. Supernatural Remedies for Fatal Seasickness mimics the cognitive dissonance of motion sickness by combining the conceptual metaphor life is a journey with the villanelle form; each of the nineteen sections represents an expansion of the same number of lines in the traditional villanelle form. Death is the obvious conclusion to life as the second refrain of the villanelle is the the conclusion to the poem, and yet, it is through English, Latin, Mathematics, and Persian that we get there from here that matters. Mosadeq’s utilization of mathematical summations is an elegant way problematize attempts to draw an individual life to a conclusion; the variables in the equation represent the variable ways in which one life effects others. The patient and carer must navigate through multiple languages: medical discourse, social care, religion, grief, legal, etc, the end of life might be best characterized by the practice of interpreting multiple overlapping maps. The patient and the carer must interpret conflicting fragments of information. This motion sickness corresponds to the movement between the two refrains of the villanelle; the motion between the origin and end of the journey, between life and death that patients and carers experience. When Mosadeq performed the poem at the Writers’ Centre Kingston Event, she invited multiple poets to read from the poem with her, giving a range voices to move the poem towards its conclusion.
Love Letters from the Other World”: Channeling Literary Influence in James Merrill’s The Changing Light at Sandover
National University, Riverside, California
Relationships Between Death and Culture, Death in literature, Death and the telephone, Death and radio.
“Love Letters from the Other World”: Channeling Literary Influence in James Merrill’s The Changing Light at Sandover.
From 1959 to the 80’s, material produced from award-winning poet, James Merrill and David Jackson’s séances moved increasingly to the center of Merrill’s poetic output, leading to a three-volume poem cycle with a “coda” called “The Changing Light at Sandover.”
In literary criticism and theory, Avital Ronell’s The Telephone Book (1989) springs immediately to mind in this connection. In her well-known book, Ronell addresses the appearance of the telephone in the literary works of authors such as Duras, Joyce, Kafka, Rilke, and Strindberg (a European canon to whom we can now add the American Merrill). She examines Freud’s remark that the unconscious is structured like a telephone, how the technology of the telephone marks the “place of an absence,” and “telephonic logic” raises fundamental questions about the constitution of self and other, the stability of location, systems of transfer, and the destination of speech. She observes the historical fact that Alexander Graham Bell’s assistant, whom Bell famously summoned in the first phone call, Thomas A. Watson, used to communicate with spirits, and saw the telephone as a way to link technology with phantoms and phantasms. Ronell’s theoretical interest in “haunted writing” from her first book on Goethe and remote control in writing (Dictations: On Haunted Writing ) would clearly have a bearing on the material in Merrill’s CLS and other material in this book, but it is a different and possibly less immediately obvious theoretical tradition I would like to open up this material to: the German one of the Öffentlichkeit, the public sphere, most notably expressed in Jürgen Habermas’ book The Structural Transformation of the Public Sphere – An Inquiry into a Category of Bourgeois Society (1962; trans. 1989).
One might pose the question of how the Ouija board in Merrill’s opus connects not just with the telephone switchboard of Ronell, but with the coffee houses, cafes, public squares, correspondence, books, theater, and works of art outside of the state or market exchange that mediated public opinion and consensus that led to political action in the German tradition of the “public sphere”. Both the literal setting of the seance sessions in CLS, and the character of Merrill’s opus as a literary salon, have been frequently pointed out by its scholars and critics.
To entertain this connection would be to expand the public sphere to include communicative action between the living/dead; a life world that opens up to and interacts symbolically with the after-life world: in the words of Sandover’s Ephraim: the dead are “the surround of the living.”
‘The New Approach to Organ and Tissue Donation in England’: A Faith-Sensitive Proposal?
Kartina A. Choong
University of Central Lancashire, United Kingdom
Organ donation; transplant; England; opt-out; faith; religion; brainstem death; definition of death
The UK Department of Health issued a document entitled ‘The New Approach to Organ and Tissue Donation in England’ on 5 August 2018. This embodies the government’s response to the public consultation launched in December 2017, when it sought views for its proposal to change the organ donation policy in the UK from an opt-in to an opt-out system. As many as 17,000 responses were received and considered. In this report, the government proposed that from 2020, everyone will be deemed to have consented to be a donor unless they have expressed on the Organ Donation Register that they do not wish to donate their organs.
Interestingly and importantly, there were a number of references to faith in this document. Foremost is the government’s pledge to make the Register more inclusive by providing the option to state that faith is important to one’s organ donation decision and that family members and/or faith leaders should be consulted if organ donation is a possibility on one’s death so as to ensure that any religious considerations are observed. Faith training would also be enhanced for relevant healthcare professionals. However, it stated firmly that the new arrangements from 2020 will not be changing the way death is confirmed, namely brain stem death. This paper explores whether the latter compromises the government’s avowed sensitivity to faith issues in the new approach.
“How lucky we were came home to me”: Intergenerational Memory and Hybrid Subjectivity in Graphic Narratives of End-of-Life Care
University of Winnipeg, Canada
graphic narrative, comics, caregiving, intergenerational memory, memoir, spiritual practice, end-of-life
My proposal is for a 20-minute paper that could be adapted to a variety of interactive formats (e.g. seminar discussion, workshop, etc.). The paper explores graphic narrative’s unique capacities for representing the complexities of end of life, with a particular focus on caregiving, the caregiving function of intergenerational memory work, and the (re)animation of spiritual practices in otherwise secular lives. Graphic narratives’ generic demand – that readers access a story by simultaneously deciphering multiple graphic elements and navigating tensions between individual panels and page layouts (Candida Rifkind and Linda Warley, eds., Canadian Graphic: Picturing Life Narratives 10) – and their unique capacities to mimic “procedures of memory” and to represent hybrid subjectivities (Hillary L. Chute, Graphic Women: Life Narrative & Contemporary Comics 4-5) enable especially evocative representations of: selves in multiple and shifting relationships over time, including relationships of caregiving and care-receiving; the cognitive, psychological, and emotional work of assessing what a life has been and what a life has meant; and the exploration of multiple, simultaneous planes of experience, and forms of existence after death.
This paper examines five recent visual memoirs of aging – Joyce Farmer’s Special Exits: A Graphic Memoir (2010), Sarah Leavitt’s Tangles: A Story about Alzheimer’s, My Mother and Me (2010), Roz Chast’s Can’t We Talk about Something More Pleasant (2014), Rebecca Roher’s Bird in a Cage (2016), and Dana Walrath’s Aliceheimer’s: Alzheimer’s Through the Looking Glass (2016) – each of which deploys graphic resources in distinctive ways to explore caregiving and care-receiving, the power of intergenerational memory to recapitulate a life at end of life, and the possibilities of forms of existence after death. To adhere to a twenty-minute timeframe, I will establish my working terms via brief references to Chast’s and Farmer’s texts and devote the main presentation to the particularly powerful effects that Leavitt’s, Roher’s, and Walrath’s texts achieve.
The Voice of the Wounded Body in Harriet Scott Chessman’s Lydia Cassatt Reading the Morning Paper
Frank William Arthur opens the first chapter of his book, The Wounded Storyteller, with patient and friend Judith Zaruches’ intimate letter about her internal struggle with chronic fatigue syndrome. Upon reading those personal lines, one learns about a woman’s journey in rediscovering her map, her way back home. What is “home”, and why does one need a “map” to get there?
Home is not the familiar social environment filled with family and friends, nor the house that fosters our beloved childhood memories. It is but the body and its connection to the external world. Illness can sometimes sever these ties between the self and the body causing one to feel alienated from his or her surroundings. Life becomes empty and the body ceases to desire. Therefore, such a map that can help reintegrate oneself into the community and reassess his or her role and position in society, is more than crucial. Without it, patients remain cornered in a dark, frightful place. The paramount question now follows: How does one find himself such a new map? This is where storytelling comes into play.
This paper aims to examine Harriet Scott Chessman’s fictional memoir as an illness story showcasing the hardship of Lydia Cassatt in her final stages of Bright’s Disease. Seeing as the book itself also incorporates into its narrative structure physical images of Mary Cassatt’s paintings of her sister Lydia, the paper will also analyze the manner in which the verbal and the visual dimension function as means of storytelling. Thus, it will be an attempt to understand how literature and painting can serve as mediums in which a voice is regained, a body is reclaimed and hence a story (identity) is shaped.
‘How easy it is to make a ghost’: Death’s Triumphant Silence in Keith Douglas
In his 1940 ‘On the Nature of Poetry’, Keith Douglas (1920-1944) proclaims that: ‘every word must work for its keep, in prose, blank verse, or rhyme’. Such statement is further elaborated upon in the 10th August 1943 letter to J. C. Hall, when he declares: ‘(…) my object (and I don’t give a damn about my duty as a poet) is to write true things, significant things in words each of which works for its place in a line. (…) I see no reason to be either musical or sonorous about things at present.’ This final ars poetica bares Douglas’s unrelenting quest for creative detachment and control; his honest, sharp, consistently brutal presentation of the vulnerability of the living. Wholly aware of the Great War poets’ legacy, Douglas declines to repeat them. In his war writings, his perceptive encounter with futility nonetheless engages in elegiac dimensions as well as in self-irony. War as reported by this young tank commander reveals an understated style, an intensely visual focus and physicality. He wanted to fight, viewed his participation in the Second World War as inevitable and, as a soldier poet of the North African desert, he compares the desert’s magnificence with the hopelessness of the human condition.
Once neglected, Douglas has come to be read, particularly after Ted Hughes first championed him in the early 60s, as the most significant poet of the Second World War. Hughes considered him ‘a renovator of language. (…) in the way he renews the simplicity of ordinary talk (…) by infusing every word with a burning exploratory freshness of mind (…).
Since time will take good care of turning into dust everything we believe in, Douglas tries to understand death – death he regards as the only certainty, the only permanence. He is a poet of death, waste and loss.
NDE and Afterlife as Plausible Phenomena in Jungian Memoir
Mirella Pintilie Jaber
literature; memoir; NDE; afterlife; atonement; change and transformation; Jungian archetypes; mind-body relationship; nature of consciousness
Within the category “Relationship between death and culture” I intend to tackle the subject of NDE as explored in some academic studies and different panel-discussions by specialists in this area, to then support it with my personal testimony for afterlife, this belonging to the literature category.
I would like to present the current state of things known from the scientific and medical research as a lead-in to my memoir (currently on its way to publication in the US by a Penguin branch) From the Belly of the Whale – a Jungian Memoir dealing with the psychological aspect of death and afterlife.
The memoir is journaling the transformative events that had happened during the one month I got to spend at my parents’ home before the least probable event of our lives, that of losing my father to cancer, the emotional roller-coaster we all embarked on, the incredible transformation in the course of one month of a man who was many things, a Patriarch, an immense intellectual, an OCD, narcissistic and hoarder who’d seen himself as immortal, and also the events that happened after his death.
After reading it, people will become more familiar with the process of losing someone near, possibly more prepared for the process than I was. The close relation between the personal experience and Jungian archetypal psychology in this book will help anyone gain perspective and find meaning, together with embracing the human emotions that naturally emerge during the process of losing a dear one, like denial, helplessness and hopelessness, fear, frustration and anger. My book helps mobilize both intellect and emotion to make people accept the wisdom in the natural processes; it helps us feel The Pathos of the Transience of Things (Japanese concept “mono no aware”) leading to the acceptance of change and transformation, together with opening an unsuspected door, if not leading to the belief in the afterlife, at least to start questioning.
Dead Celebrity: Real Person Fanfiction in online Fan Communities
fandom, celebrity, death studies, fan fiction, internet, online communities, abuse, suicide.
Since the birth of the internet and online fan communities, fanfiction has enjoyed an increasingly prominent role in fandom. Whereas traditional fanfiction has dealt exclusively with the expansion and/or crossover of existing universes, a relatively new sub-section of the genre has moved away from character narratives, employing real celebrities in its construction. This is known as Real Person Fanfiction (RPF). In the case of deceased celebrities, there is a morbid undercurrent to RPF. Frequently, the deceased is posed in a time, place and context outside of the real, becoming an avatar to serve the needs of the fandom which idolizes them. The outcome of this worship is not always positive for or complementary to the celebrity.
My focus is Kurt Cobain and his appearance in RPF. Cobain has long held a prominent position in the celebrity world as tragic rock-star and poster child for Generation X and the Grunge movement. In his RPF however, he is transformed from rock star, junkie, husband and father, into a victim of sexual and physical abuse. When we consider that it has been over 25 years since his death, we must question why does this fandom want to write the celebrity as victim? In the case of Cobain, while there are many biographical and auto-biographical accounts which exists, we must consider what role his RPF plays in defining his posthumous image.
I draw on the fan studies work of Henrik Linden and Sarah Linden, along with biographical work on Cobain by Charles R. Cross. Additional source material will be drawn directly from RPF archives. My goal is to highlight the way in which fan groups continue to “speak about” dead celebrities and the impact of these discussions on the legacy of celebrities like Cobain.
Dying of Love
Joe Felipe Jr. passed from this life on January 29, 2019 in Chico, California at the age of 71. He was my brother. Joe lived with severe schizophrenia for around a half century. In his life he bore countless infirmities, came close to death more than once, and suffered from many serious ailments and conditions, but in his later life none of this mattered to Joe. He was constantly and continuously filled with intense faith, gratitude, hope and even joy. “I love everything God’s got. I love everything God’s got. Now I’ll pray,” he used to say.
Joe said he talked to God as he would talk to you or me. After decades of listening to him, and being with him, I am convinced that Joe did talk to God, just as he claimed. The miracles of Joe’s life are so numerous and frequent that I came to take them for granted. It is a sense of the miraculous in my brother that prompted me to write about him—an effort now eight years in the making.
This final essay about my brother Joe is a reflection, a song, about his life and death, a process I will call, quite unoriginally, ‘dying of love’. Abandonment, trust, gratitude, purpose, audacity, playfulness, self-giving, joy—these are a few of the ‘traits’ of dying of love, betrayed in the very utterance of their being.
I do my best to speak as my brother would have me speak, about who he was, and who he is, in the littleness of his life with God.