Nick Allen was an SOHP field scholar during the 2018-2019 academic year. He recently received his M.A. in English and Comparative Literature at UNC, with a focus on Literature, Medicine, and Culture. Nick recorded many oral histories with narrators focusing on themes on death and dying. Here he shares his final piece from his series on Oral History, Death, and Dying. (We are very pleased to say that we’ve managed to keep Nick onboard at SOHP to continue working on Stories to Save Lives. Stay tuned for more adventures from Nick Allen, SOHP employee.)
In my last post, Carl Henley discussed confronting death hand-in-hand with his wife. Their shared experience of accepting what was happening to them was powerful and serendipitous, but it was also very close to “the end.” In this post, I’d like to share clips from three narrators who face the reality of their deaths somewhat sooner. I hope you’ll share my enthusiasm for their bravery and their candor.
Although we might say that in two of these stories the dying person is compelled to confront death due to terminal illness, we can find countless examples of terminally ill patients who never truly face their deaths. I don’t find that their hand being “forced” detracts from the way that they comport themselves during this last chapter. Their poise in the face of death is laudable. The way that they have decided where the line of “too much care” is speaks to a way of being in the world that we need so much more of.
By articulating our feelings about death and dying with nuance, even if we must engage with existential crises, we also give meaning to life. If we allow the “fallacy of misplaced concreteness” to create binaries in our paradigms of life and death, then we risk devaluing the important moments in life. If we value life as a biological fact above all else, we assert that every moment of life has the same level of meaning and significance because it shares the trait we apparently value most: a beating heart. When we openly express that some degrees of that life/living are unacceptable to us, like brain-death, a life of ventilator support, or perhaps even the inability to watch football on TV, we give more meaning to every moment of life that is acceptable to us. We acknowledge that these moments are temporary and we feel compelled to cherish them.
After reflecting on a career at the bedside of dying patients, narrator Marie Vargo-Flynn said, “The whole thing is, don’t take the day you have for granted! Tell people you love them every day.” To flip this idea into thanatological terms, our inability to engage with death as a concrete thing and necessary, even desirable eventuality for our lives, equates to an inability to fully engage with life’s value. Dying, after all, is for the living.
If you’d like to experience more oral histories of death and dying, please check out my Virtual Reality experience “There at the Bridge” by following this link.
Hello! It’s good to be back!
As many of you know, I spent last semester in Finland on a Fulbright Fellowship. I was based at the oldest university in the country, the University of Turku, a lovely place in the west of the country that hugs the banks of the Aura River, a tributary to the Baltic sea.
While I was there I taught a course called Voices of the U.S. Women’s Movement, which used many SOHP interviews to help students understand the depth and complexity of U.S. feminism in the 1960s and 70s. My students—a wonderful mix of Finnish and foreign exchange students—found the stories deeply compelling, and loved talking about the similarities and differences between the movements in the two countries. Although I had been warned that it is hard to get Finnish students to talk in class, in fact many of them were eager to discuss the issues.
I also had a research agenda; I set out to understand how Finnish scholars approach the field of medical humanities and the role that oral history plays in their research there. As we enter the second year of our Stories to Save Lives project, I was seeking new models, new ways of thinking about the questions we ask and the answers we hear, and I wanted to learn as much as I could from an international and interdisciplinary set of scholars and contacts. I shared our research with many different audiences, and was pleased by the responses I got. While there are historians in Finland who use oral history as a method, they do not have robust centers for oral history like the SOHP and others around the country here—so they were impressed by the scale of the work we can do here. They were also surprised—some, perhaps, even shocked—by the degree to which we share our interviews publicly. The European Union has privacy guidelines for research which Finnish authorities interpret as strictly as possible, making it difficult for oral history interviews to be made public.
I learned a great deal from the many researchers I spoke with, and made many wonderful new contacts and colleagues in Finland, and I am looking forward to the unfolding of new collaborations over time. I am delighted that Kaisa Vehkalahti, a researcher from the University of Oulu, where I visited in April, is already planning a trip to the SOHP this spring. She recently received major new funding from the Academy of Finland for a project called “Rural Generations on the Move: Cultural History of Rural Youth, 1950–2020.” She aims to identify important cultural and social shifts in the construction of rural youth and rural identity formation from World War II up until the present. She was struck by what she called our “innovative approach to oral history sources – particularly the policy-relevant uses of rural oral history collections” and thinks they can “offer a very fruitful model for creating new ways of both collecting and using oral history in Finland.” In addition, two Finnish Fulbright fellows will be on UNC’s campus this year: Anna Koivusalo, a post-doctoral researcher studying “The Culture of Feeling and Historical Change: Emotional Practices and Experiences in the U.S. South during the Civil War Era;” and Nikko Heikkilä, who is working on his dissertation on “The Cultural Politics of the Civil Rights-Era Ku Klux Klan.” I’m looking forward to building on our relationships and increasing the ongoing exchange between our universities.
In addition to the intellectual richness of my experience, of course, I also had a lot of fun! My husband, Benjamin Filene, also had a Fulbright fellowship and was based at the City Museum of Helsinki. We explored the country and also travelled some in Europe. We both kept blogs about what we were learning and experiencing; you can find mine here, and Benjamin’s here.
I’m excited to be back, and am looking forward to a fruitful and productive year at SOHP and with all my colleagues and friends in the Center for the Study of the American South and at UNC. Sara Wood, Hannah Gill, Malinda Maynor Lowery, and Terry Rhodes made it possible for me to take advantage of the amazing opportunity I had, and for all that they did to support me and the SOHP while I was gone, I am profoundly grateful.
Join us for a live listening room with the five finalists of SOHP’s 2019 Sonic South short doc audio competition In Sickness and In Health on Thursday, May 9 at 7PM at the Chapel Hill Public Library. Featuring short audio works from local producers using SOHP archives to explore healthcare, medicine, and illness in the South. For more information visit our Sonic South page.
Celebrate Women’s History Month and learn about pioneering Carolina women. This is the Time walking tour highlights the history and experiences of women connected to Carolina, as captured in Southern Oral History Program collections. The tour is available on Friday, March 29 at 3PM through the UNC Visitors Center. Go here to make a reservation or call 919-962-1630.
Join us for programming commemorating the 50th anniversary of the 1969 UNC Foodworkers Strike at the Wilson Library on Tuesday, March 20, 2019 from 4:30-6:30pm.
On February 23, 1969, after repeated attempts to bring their grievances to the attention of the University administration, food service workers at UNC-Chapel Hill walked out at the beginning of the dinner shift. With the support of the Black Student Movement and other allies, the striking workers highlighted labor and racial inequities on campus. After a month of direct action and negotiation—during which Governor Robert Scott sent the state patrol to campus and mobilized the National Guard in nearby Durham—the strike ended with a wage increase and improved conditions for the food workers. It was one step in the ongoing fight for workers’ rights at UNC.
To commemorate the anniversary of the strike, the North Carolina Collection and University Archives at Wilson Library have commissioned a performance directed by Kathy Williams, a faculty member in the department of dramatic art at Carolina and a member of PlayMakers Repertory Company. Actors from PlayMakers Repertory Company will tell the story of this key moment in the history of labor and activism at the University.
The program draws from the SOHP’s oral history project on the strike, along with contemporary news accounts and archival documents at the Wilson Special Collections Library. It focuses especially on the perspectives of the workers and student activists who led and participated in the strike.
The evening begins at 4:30pm with a reception and viewing of the exhibit, “Service Not Servitude” in Wilson Library’s North Carolina Collection Gallery. The performance begins at 5:30pm at the Pleasants Family Room at Wilson Library. For more information about the program email email@example.com, or call (919) 962-4207.
I have had the pleasure of working with Orange County’s Department on Aging to help bring filmed oral histories about the history of Orange County to its citizens. The idea was first suggested by members of the Project EngAGE Intergenerational Senior Resource Team (SRT). Project EngAGE is a 13-week senior leadership program aimed at training local older adults to become community leaders who help their communities become ideal places to age. After course completion, Project EngAGE graduates join a variety of different SRTs which all focus on community engagement around aging topics. The goal of the Intergenerational SRT’s Speak Out! project is to get high schoolers in conversation with lifelong members of their communities. With the help of community partners, the SRT has recruited four older adults from different areas of the county to tell their stories and share the history of Orange. With ages ranging from 80 to 106, these narrators can give us profound insight into all of the failures, tribulations, triumphs, and joys of our past.
To engage the next generation in learning about the past, Orange County has partnered with Andrea DeGette’s videography students at Cedar Ridge High School. Using the skills they’re currently developing as documentarians, DeGette’s students will work as interviewers, videographers, editors, and directors to create a documentary of these life history interviews to share at two screening events in Orange County’s senior centers in May.
On Friday, February 8th, I had the honor of giving an introductory training on oral history’s methods and best practices, as well as practical interview tips, to these future historians. As we discussed the ins and outs of the interview process, I was ecstatic to witness the curiosity and engagement of the students. To practice the methods we discussed, the students paired up and took on the role of either narrator or interviewer. Their challenge as interviewers was to use one of three provided prompts and to go deep with their narrator on one line of questioning for six full minutes. Using their burgeoning chops of engaged listening and strategic open-ended questions, students got a taste of an afternoon in front of an oral historian’s microphone.
Stay tuned for updates about the Speak Out! Documentary. Special thanks to Bobby Cobb, Betty Myers, Shenae McPherson, Officer Andre Richmond, Andrea DeGette, Cedar Ridge High School Videography Club, and the Orange County Department on Aging for their enthusiasm and dedication to this project and documenting the voices of Orange County.
“As I think back about my taste of death, it is clear that my preparatory thinking enhanced the possibility of a peaceful letting go. Can we ever be sure when our lease is up? Waiting until coda-time may be too late.”
- David Martin, Facing Death page 68
My last post ended with a consideration of death’s long-term trajectory that we observe as we age. Although it has been regarded as a decidedly morose thought, the idea that we’re all slowly dying has some real merit. Perhaps it deserves a chance to re-enter conversations about death without the “I’m-13-and-this-is-deep” associations. One mistake we make in our conception of death is to project binaries onto it. Although we can usually delineate experientially between what is alive and what is dead, pinpointing the exact moment of death has become increasingly problematic as medicine understands physiology with increasing nuance. Degrees of brain death, the mere existence of the Harvard Ad Hoc Committee on Brain Death, and the ensuing legal and philosophical debates demonstrate that death is no black and white matter. Thomas W. Laqueur elaborates in the afterword of Interdisciplinary Perspectives on Mortality and its Timings about how the physiological state of death is negotiated in the modern hospital for comatose patients:
This is what happens: First, doctors use clinical criteria to rule out other reasons for someone being in a deep and persistent coma rather than whole brain death: abnormally low body temperature; evidence of barbiturate poisoning, for example. Then, they administer a battery of neurological tests, dating back to the nineteenth and early twentieth century, that cumulatively show whether the lower brain, the part that controls breathing, is functional. There are many more. All bear testimony to the glorious history of nineteenth-century neurology and, cumulatively, to the destruction of the place in the brain that controls breathing as well as so much else. Only when all of these examinations indicate that the brain stem, and hence the whole brain, is indeed dead is a person eligible for the determinative test for death. The candidate is given a big hit of pure oxygen so that her blood is fully saturated: (10 minutes pre-oxygenation). Then the ventilator is shut off. If she does not breathe within three minutes—in some jurisdictions, five or even eight minutes—she will never never never never breathe again. We know this because the part of the brain that controls breathing is, as the earlier tests had suggested, truly gone. The time of death, to repeat, is recorded not when the patient, already suspected for some time of being brain dead, on the basis of various neurological tests, but when she failed the apnea test and was dead in the old-fashioned way.” (148-149)
Does this medical evidence feel conclusive? Maybe not. According to Laqueur, patients are sometimes hooked back into the ventilator to protect the viability of their organs for transplant after the death is recorded. Our stomachs may still churn at the thought of removing ventilator support in the first place, but somehow replacing it feels like another transgression. The issue is fraught medically, but also from a more pedestrian perspective: we don’t like to have to take control of the threshold between a breathing moment and a subsequent non-breathing moment, and something visceral tells us so when we read the above description. Additionally, a profound reframing of this death moment and the life at stake occurs: comatose patients become “candidates” for death, which becomes “real” only once a series of tests have been passed.
Robert Morison charges us to avoid the “fallacy of misplaced concreteness” when it comes to death.[i] He identifies the danger of squishy, process words like “living” and “dying” being replaced by apparently bounded, static words like “life” and “death.” Similarly, in Cuttin’ the Body Loose, William Gavin argued that “the word death does not have meaning invariance; it has meant different things to different cultures at different times. More strongly put, there is no such thing as death ‘in itself,’ or, if there is, we don’t know anything about it.”[ii] All of these subtleties around our constructions of death lead us away from the so-called objective, biological “facts” and towards the subjective expressions of life, particularly through story. Eric J. Cassell argues that “there are two distinct things happening in the terminally ill, the death of the body and the passing of the person.”[iii] Quantitative measures, however suspect, can measure the death of the body, but the passing of the person relies on narrative for meaning-making. Importantly, meaning-making in death narratives relies on the audience as much as the storyteller. Gavin posits, “the absurd thing is, that one has to do this [address their own mortality], and, that one can never accomplish the task of making death and dying meaningful.”[iv] Importantly, in the work of making meaning for our deaths, the meaning is made for the ones we leave behind. Although this is true for any audience-storyteller relationship, it seems more piquant when the storyteller is gone. What the dying do in crafting an end of life narrative is more for the people who will tell their story than it is for themselves. To shift the perspective (and perhaps state the obvious), in the way we live and die, we take part in the dictation of our legacy and afterlives.
In this week’s sole clip, Carl Henley, a retired professor emeritus from the School of Social Work, describes an unusual experience from the final weeks of his wife’s dementia-related death. Whatever the cause of this final conversation they got to share, it created space for a significant moment of meaning-making. This moment is a story worth repeating and probably a precious thing for Carl to reflect on in the absence of his wife. We can’t count on experiences like this to happen to us or our loved ones, so perhaps embracing dying as an ongoing process rather than a moment in time would provoke more conversations like this in our own lives. Perhaps we would have a greater sense of urgency when it comes to embracing those sweet moments of human warmth and vulnerability when they happen across our path.
[i] See Morison’s piece “Death: Process or Event?” in Death Inside Out: The Hastings Center Report edited by Peter Steinfels and Robert M. Veatch (1975). Quote from page 64.
[ii] Page 32
[iii] See Cassell’s piece “Dying in a Technological Society” in Death Inside Out. Quote from page 45.
[iv] Page 191
The spring semester is underway and flying by, and we’re thrilled to introduce our 2019 spring SOHP interns. They’ll be focusing their research and fieldwork on interviews with North Carolina members of the 2020 Vote Centennial Initiative, leading up to the centennial of the passage of the 19th amendment.
Anne Bennett is a junior majoring in Southern studies and Jazz studies. She plays jazz saxophone professionally, and does comedy both on and off-campus. This past summer, she worked as a production intern at The Late Show with Stephen Colbert. She plans on pursuing a career in comedy production once she graduates and looks forward to finding ways to present archival research and tell women’s stories in new and creative ways.
Jona Bocari is an international Morehead-Cain scholar at the University of North Carolina at Chapel Hill, majoring in economics and history. Born and raised in Albania, she studied at the United World College of the Adriatic, an international high school in Italy before joining Carolina. A native speaker of Albanian and fluent in English, Italian, Spanish and French, she is deeply passionate about global perspectives concerning issues of justice and the power of stories to drive change.
Michael Leydendecker is a senior majoring in history and political science. A native of Winston-Salem, North Carolina, Michael enjoys running and volunteers teaching civics in Durham at a local elementary school. He is looking forward to learning more about oral history, the American South, and giving a voice to a part of its rich history.
Elly Thompson is a junior from Charlotte, North Carolina who is majoring in public policy and minoring in history. She is interested in studying the intersection between historical representation and memory in American policy making. Outside of academics, Elly is a member of the Alpha Chi Omega Fraternity whose main service focus is Domestic Violence Awareness. Through this organization, Elly has helped execute events to support local women’s shelters, including the Chapel Hill Compass Center.
Since May of 2018, I’ve been interviewing a variety of narrators—from nurses and doctors to clergy and academics—about their experiences with medicine. With my own research centering around aging and end of life, death and dying is a natural point of discussion between myself and the narrators I’m interviewing. Through this process and these conversations, I have come to hold a strong conviction that the connotations evoked by using words like “death” and “dying” in our culture are sorely in need of a semantic overhaul. As a result, I set out to further understand how people who have brushed against death (in any sense) talk about it, and I’d like to share a few of those stories with you through a series of blog posts.
In this series, I’ll be posting clips from those interviews and reflecting on them through the lens of death and dying studies, or the study of thanatology. As we reflect upon these interviews, there are a few crucial questions to anchor our discussion:
- What is the state of death in our culture?
- What effect is created when we experience death in oral history?
- How does experiencing death in narrative translate to our own understanding of mortality?
- How do moral judgments of good and bad play into these stories?
As with any kind of story, it is important to consider how we exchange stories of death. We walk a thin line between experiencing a narrative and creating a spectacle of it. An important piece of maintaining respect for the story is holding reverence for the narrator and their narrative. After all, the stories of death that I have helped archive touch on some of the most vulnerable and momentous episodes of each narrator’s life. [i] Sharing in those moments is a privilege and I hope you will join me maintaining an air of respect as you listen to these stories—something like whispering while in an old cathedral.
In this opening clip, Brian Cornell, clergy for the Methodist church and volunteer chaplain for many years, mentions “being there at the bridge,” highlighting how death is a trip between two places. Whatever your spiritual leanings, thinking of the dying process as a journey has very practical implications for our time on this side of life. When we consider death as a journey, we give it a definitive beginning, middle, and end. Drawing these delineations helps us put death in a familiar framework. All successful narratives have beginnings, middles, and ends, after all. But most important to an American death ethic is the beginning. It is our habit to never truly accept that our time is arriving and to fight furiously “that good night,” but time and again we have seen the trauma caused by denial, both in the eventual mode of death (e.g. CPR or loved ones having to unplug life support) and in its effects on the ones left behind. We love to fight death, but we never win. Choosing our battles is an important part of a healthy end of life plan. When the journey of death has a beginning then we have accepted it as a natural sequence, something necessary and free of shame or guilt. There’s a reason Monica Williams-Murphy called her 2011 guide to the other side “It’s OK to Die.”
Death is a ubiquitous experience that is a deeply entrenched part of the American medical experience, yet, despite it being something that everyone will experience, there remains great discrepancies between how we envision our final chapter and how it elapses:
In California, for example, 70 percent of individuals surveyed said they wish to die at home, yet 68 percent do not. Instead, many of us die in hospitals, subject to overmedication and infection, often after receiving treatment that we do not want. Doctors know this, which may explain why 72 percent of them die at home.[ii]
It’s difficult to explain why so many deaths aren’t satisfactory, but Ivan Illich put it this way: “The ritual nature of modern health procedures hides from doctors and patients the contradiction between the ideal of a natural death of which they want to die and the reality of a clinical death in which most contemporary [people] actually end.” [iii] The rise of hospice and palliative care has advanced the experience of dying with bounding strides in recent decades, but there’s still a great deal of work to do in order to rectify our wish to die at home with the reality of that experience.
The Conversation Project posits that increasing our conversations about end of life is a good place to start. [iv] With the rise of projects centered around the medical humanities, such as the Stories to Save Lives Project from SOHP, we can work within a new framework to consider death and dying differently.
In like fashion, I hope that through these blogs posts, you will gain a little more familiarity (and perhaps even comfort) with not just the topics of death and dying, but discussing them—an essential first step towards creating a satisfactory end of life story for yourself and your loved ones.
I’ll leave you with one last thought to ruminate on. In this clip, Brenda McCall, a retired nurse, considers the hard work of sitting with one’s own mortality. She attributes the continuum of declining independence we experience as we age to a fundamental fear of death. Perhaps accepting our own fragility is the first step towards accepting our own mortality. At almost any age we can observe the body’s failures and begin to do the difficult work of accepting our mortality and preparing for our (eventual) deaths.
i See Christine Valentine, Bereavement Narratives: Continuing Bonds in the Twentieth Century (London and New York, 2008).
ii See MacPherson and Parikh, “Most people want to die at home…” https://www.washingtonpost.com/national/health-science/most-people-want-to-die-at-home-but-many-land-in-hospitals-getting-unwanted-care/2017/12/08/534dd652-ba74-11e7-a908-a3470754bbb9_story.html?noredirect=on&utm_term=.ce54fcce6757
iii See “The Political Uses of Natural Death”