From the NICU
A borderland between womb and world,
incubation threshold in which you are slowly and softly eased into this new life.
She sits, staring at the wires and tubes
emerging from her baby’s body,
coupling machines, pouches, and alarms.
Time interminable in this place.
You create memory pathways of hot and cold, pain and bliss,
milk and mucus, blood, shit, and tears,
all, a wonder to you.
The children’s hospital’s pediatric palliative care team (PPCT) is giving reports in their team meeting. Their first report is about the family from Puerto Rico. Their daughter Blanca is 11 years old. She has leukemia. “Mom seems to be accepting what’s happening,” the social worker, Sarah says. She pauses. “Mom hopes Blanca is going to get better. Yet, Mom also knows, ‘God’s going to do what he’s going to do.’ She told me, ‘I pray for the strength to accept what God brings.’”
Suzanne, the music therapist, reports. “I saw Mom yesterday. She was emotional. She made me cry. She wants Blanca to live. She doesn’t want her to suffer.”
“I saw Mom this morning,” Dr. Forsyth—Mary—reports. “She’s tearful today. She got some bad lab results back.” Mary’s voice takes on a harder edge. “She’s got a short window. They’re going to try to extubate soon—take out her breathing tube; she might get worse.”
“Mom wants to hold Blanca so badly,” Suzanne says. “We need to let her be able to hold her.”
“The bone marrow team will talk to Mom today to let her know what’s going on,” Mary responds. “I’ll talk to them, ask them to give Mom opportunities to hold her.”
“That will mean a lot to her,” says Suzanne.
I talk to Mom later with the assistance of an interpreter. I find her outside Blanca’s room. She places a finger to her lips. “Shhhh,” she says. “Blanca is sleeping.” I notice the deathly quiet in the hallway, and it occurs to me that cancer is fought in bruising silence.
Mom explains how she came from Puerto Rico with her husband and two children, uprooting their entire family because their doctor at home told them this hospital was their daughter’s only hope. I think of everything they gave up for this fraught campaign. I think of how it must feel fighting for a stricken daughter so far from home, in an alien culture, with a different language and different customs. I think of the team’s comments. She’s got a short window.
I turn to the interpreter. I wonder if I should ask, but I have to know. “Ask her,” I say. “Was it worth it?”
She translates, “¿Valió la pena?” and I immediately see the tears well up in Mom’s dark eyes. I feel the sting in my eyes as Mom answers. I know what she’s saying before the interpreter utters a word.
“Sí,” she says, “Yes.”
“Pase lo que pase, sabremos que hemos hecho todo lo que pudimos.”
“Whatever happens, we will know we have done everything we could.” I know what the team thinks will happen. I cannot return her gaze.
* * *
The power is out, and I’ve dug up a flashlight. I’m reading by its focused ring, deep in my book as thunder crashes. I savor each word and turn the pages slowly as my skin prickles in twisted sympathy with the words on the page as eerie flashes of lightning spider through the night.
The feeling of the virals was stronger here: she was headed toward something … . Then she saw it: a gaping maw of blackness, set in a bowl-like depression. The opening was a hundred feet tall or more. Curved benches, like an amphitheater, carved from the rocky face of the mountain, were situated at the cave’s mouth. Bats were flicking through the sky. It was a door to hell.
(Cronin, 2012, pp. 11–12)
Suddenly, a flash lights up the sky and a clap of thunder booms. I jump. The semi-darkness plunges to black.
“Damn!” I think. “This book comes with special effects!” I flick the light switch behind my head. Nothing. The power is still out. I have no spare batteries for the flashlight. I shudder involuntarily. I don’t want to be trapped in the dark.
* * *
In this book, we address issues of life and death across a wide-ranging body of interdisciplinary research to articulate points of convergence interlacing the field of medicine with ethnographic and narrative inquiry, thanatology, psychology, and cultural studies. To facilitate the description of these significant conjunctions coupling nominally distinct arenas of knowledge production in medicine, social sciences, and the humanities, we highlight the dialectical interplay between fictional accounts of death and the ordeal of death as experienced in a hospital setting.
In so doing, we draw upon indelible representations of death and dying as depicted in various media registers and death as it is experienced in a state-of-the-art hospital caring for acutely ill children in tandem with custodians, support staff, physicians and families, to plumb the complex intersections of life and death. With detailed reference to the tangled skeins of concrete, palpable experience and salient fictional accounts, we aim to more fully limn the discursive forces that shape the meaning and phenomenological substance of mortality. Situated at the vanishing point on the horizon where life and extinction converge, as death is always in-bound, always scheduled to arrive and spirit life away, we seek to understand the compound relationships that govern the symbolic exchange between the quick and the dead, the failing and the healthy.
In his classic and widely influential work lamenting the failure of most modern men and women to squarely grasp the full import of our impending mortality, Ernest Becker forcefully argues in The Denial of Death (1973) that the looming prospect of death demands our complete, sustained attention. For Becker, the meaning and tenor of our collective and individual experience of life cannot be understood without a corresponding comprehension of what it means to die. The inevitability of death brings value to life, argues Georg Simmel (2007), who asserts that life has no form apart from the closing punctuation of death. Death is the marker that makes life and our conscious appreciation of existence absolutely priceless. Death makes fleeting moments of joy all the sweeter as they are so achingly transient; it provides us with the sacred and utilitarian knowledge needed to fathom the absolute meaning of human existence. Or, as Alberto Tenenti affirms,
[Renaissance savants and the enlightened moderns who follow in their wake] were led by the experience of pain, and the resulting awareness of their organic destiny, their physical transformation, to affirm a love of life and to proclaim the preeminent value of worldly existence.
(as cited in Ariès, 2000, p. 128)
Because we are terminal, our brief stay in the realm of the senses has value. It is this oxymoronic mystery that makes death a transcendental ambiguity of the first order—it is both the animating engine of pleasure and sustenance as well as the dark vehicle that carries it all away. As stinging negation and vital affirmation, it is this enigmatic combination that makes death our absolute Other. The heaviest of all burdens for self-aware creatures to shoulder, the ubiquitous presence of death brings with it a special significance for the communal meaning of what it means to be (fatally) human or as Sallie Tisdale (2018) has it, a future corpse. Howsoever we make our way through life, there is one thing we all share—each of us has death as our life-long companion.
Proposed by social psychologists Greenberg, Pyszczynski, and Solomon (1986) in order to further Becker’s original insights, Terror Management Theory (TMT) asserts that in the face of our certain end, humans invest in cultural worldviews that endow the world and our short time in it with grave significance. TMT suggests that humans are universally motivated by the desire to overcome their fear of death by constructing meaning in their lives in various ways, including the production of fictional works intentionally fabricated to offer some answer to the mystery of corporeal being and its final negation. To date, TMT has found support across hundreds of empirical research studies designed to measure the role mortality salience—our awareness of our own death—plays in regulating the serpentine relationship between our experience of self and world cast against the event horizon of our death and the deaths of those we hold close. It is this search for meaning as a response to the shared awareness of our demise that influences various perceptions and actions that validate one’s worldview—including social judgments (Taubman-Ben-Ari, 2011), media preferences (Taylor, 2012), and political decisions (Winerman, 2005). Communication scholars have used TMT as an explanatory metatheory to illuminate a multitude of symbolic, cultural, and interpersonal behaviors (Miller & Landau, 2005; Salzman, 2001). For example, TMT has been used to explain the attraction to violent films by suggesting that an intense engagement with cinematic mayhem provides context, meaning, and significance to one’s life and death (Sullivan, Greenberg, & Landau, 2009). Sullivan and colleagues submit that the theme of death in these grim stories offers compelling, culturally specific accounts for the sense and substance of mortality, immortality, humanity and our all too tenuous “animality” (p. 196).
In furthering our understanding of this universal enterprise in which “all men and women are mere players” and all are dispatched to “oblivion” (Shakespeare, 1988, p. 638), our account extends the utility of TMT by canvassing a motley collection of qualitative data to bolster and deepen the heuristic value of TMT. Specifically, we examine the experience of embodied transience through a macroscopic view of popular culture as text and context, framing and detailing the collective pageantry of death, complemented by a granular, ethnographic engagement with the lived experience of loss and mortality. Along with furthering our understanding of the macabre dance that forever partners life with death, we aim to demonstrate that methodological hybrids produce robust research findings, illustrate the power of holistic understanding of embodied knowing, advance the catholic comprehension of human experience, and further the sweep of the considerable insights already generated by TMT.
To augment empirical accounts of how humans manage the psychic toll of individual and collective extinction, we employ two related strata of analysis. The first stratum is a cultural examination of media artifacts including films, television shows, song lyrics, and books centered on themes of death and dying. In this pursuit, we use cultural narrative and storytelling to understand death. Our second stratum counterpoints stories and cultural accounts of death’s unceasing labor and consists of reflexive ethnography and autoethnographic narrative accounts generated from extensive fieldwork conducted in conjunction with a pediatric palliative care team at a large, Southeastern hospital serving critically ill children and their parents and extended families. Both layers of narrative analysis address the intertwined aspects of cultural understanding in relation to mortality that are not easily probed by even the most ingenious and sound modes of quantitative inquiry.
* * *
In Season 2 of The Walking Dead (Ferland & Darabont, 2012), a young boy, Carl, must help his mother through a Caesarean section without anesthesia or conventional medical gear and usher his infant sister into their zombie-infested world. This is a well-worn, narrative set-piece from apocalyptic dramas as the young must grow up fast if they are to secure a place in a challenging dystopia. Just as common in these primal scenes, mother perishes as soon as the babe departs the sheltering womb for the dangerous world. Tightly coupling life and death in this fashion works to boldly highlight the entangled ties of the yoked pair and demonstrate how life and death are bonded inversions. These parturition crises also carry some hard-won uplift as humanity soldiers on in the face of menace and the future is peopled. Of course, since this is a horror show, the young boy has one more onerous task to complete after birthing his blood. If Carl’s mother is not to return as the reanimated undead, Carl must send a bullet rocketing through her brain. On paper, this reads like cruel, gallows humor fit for the callous and immature. As drama, the moment the final shot sounds is devastating.
* * *
Even a cursory examination of popular movies of the last decade yields the realization that almost all films have death as some part of the plot. Of course, there is the corpus of films with death as the explicit focus: horror and mondo films (e.g., Night of the Living Dead (Broadstreet, 2006; Cullen, Meyette, Zuver, & Zuver, 2014; Hardman, Streiner, & Rome...
