A matter of life and death: Imploring film to elucidate the relationship between chronic illness and death

Abstract

Despite chronic illness being widespread and increasing in prevalence, curricula largely avoid preparing learners to navigate chronic, often life-threatening, conditions in their daily lives or to prepare learners for the implications of these conditions. In this paper, I begin by discussing an exchange about chronic illness and death that I recently had with a student I called Maya (a pseudonym). I consider how my conversation with Maya reoriented my thinking on the relationship between chronic illness and death. I next illustrate that reorientation in thinking by discussing death’s representation in film, which I propose as a viable means forward for elucidating the relationship between death and chronic illness for others.

Keywords:

• Arts-based research
• death-centered pedagogies
• chronic illness

When I listened to her talk about her fears of her own mortality—knowing what would probably kill her and wanting to be remembered, I felt like I was staring back at 20-year-old me. My heart crumbled, and I wanted to embrace her and tell her that all these plans may fall apart, but that it’s going to be okay.

The excerpt above is extracted from my analytic memos, taken after a conversation with a young woman who wished to be called Maya during a series of interviews that I conducted with chronically ill¹ college students in fall 2022. Chronic illness has been a salient part of my life for as long as I can remember, and for me, college became the first place where I started to seriously consider what it means to live my life with serious medical conditions that are not going away. This project, a study that investigated chronically ill college student experiences at a four-year postsecondary institution (Ball & Tuckwiller, 2024), provided an opportunity for me to talk with this group of people that I have cared so much about and been part of for so long. My head flooding with academic literature on “barriers and facilitators” of college student well-being, I crafted a series of interview questions to investigate how we might improve higher education to better support this unique group of students. Midway through the interviews, however, Maya issued me with a stark wakeup call through her unanticipated reflection on mortality and chronic illness. It was not access to disability services or a chronic illness club on campus that interested her the most, though she was intrigued by both ideas. Rather, she confronted me with the awareness that her diagnosis gave her a window of clarity into what her death will be like, and she needed someone who had walked in her shoes to teach her what to do with that knowledge.

In this paper, I begin by reflecting on how my conversation with Maya reoriented my thinking on the relationship between death and chronic illness. I note how considerations of disclosure played a role in how the topic surfaced during our conversation, as well as how Maya’s describing the relationship between death and chronic illness specifically resonated with my own sentiments toward that relationship. To consider how this relationship may manifest in different ways across students, I juxtapose my encounter with Maya to an encounter I had with a student who wished to be called Ian during the same series of interviews. In considering how I might help students like Maya and Ian navigate the complex relationship between chronic illness and death, as well as how other postsecondary educators may in turn do the same for their students, I turn toward examples of the death and chronic illness’ representation in film as a promising teaching tool.

A note on terminology

Previous literature has noted wide variation in the use of the term “chronic illness,” with some definitions including both physical and mental illnesses while others only include physical illnesses (Ball et al., 2024; Bernell & Howard, 2016). For the purposes of this study, I refer to chronic illnesses as sustained physical impairments, given the study’s emphasis on the physical trajectory of chronically ill lives. Further, it is important to note that not all chronic illnesses are terminal (e.g., likely to result in death in the near future). Yet, as I will discuss in this paper, even illnesses that do not have immediate implications for one’s death do not preclude those illnesses from influencing our conceptions of what our deaths may be like (e.g., when and how our deaths will likely occur, based on the history associated with our illnesses). Therefore, I use terms like referring to terminality or illness severity in exchange with chronic illness when referring to the implications of chronic illness on our perspectives regarding death. Terms like “mortality” and “finitude” are used in reference to awareness of life’s temporality or our subjection to death.

Meeting Maya

This paper stems from a conversation I had with a chronically ill college student during a series of 20 interviews I conducted with self-identified chronically ill undergraduate students during fall 2022, my second year of doctoral program training. Notably, the study represented the first moment in my academic training where I would be able to directly speak with chronically ill students, who were the primary reason why I decided to pursue a graduate program focused on education and inequality in the first place (see Ball & Tuckwiller, 2024 for full study manuscript). Leading up to the series of 60-to-90-minute interviews that I would conduct (18 via Zoom and two in-person on a university campus), I carefully constructed questions around the asset- versus deficit-based binary that curriculum and disability scholars alike have embraced over the past several years (see Lin, 2020; Lundberg, 2023; Scheese, 2018; Symeonidou, 2019; Waitoller & Thorius, 2022). I expected to hear about the power of community, students’ individual strengths, and the social barriers standing in the way of their success. For the most part, participant responses aligned with my expectations. Midway through the interviews, however, I met a bubbly, perky girl who I called Maya. Maya used smiley face emojis in our email correspondence. We got sidetracked during the interview and talked about our mutual love of baking, from KitchenAid mixers to the need to “treat yourself” after a tough day.

Our sidetracked conversation represented the first of many moments during the interview where our words veered from the centered questions toward something other—unbidden conversation, discourse, and modes of reflection. Before we even began discussing chronic illness, I found that Maya’s upbeat presence struck a chord with how I perceive my own. Nearly as soon as we began speaking, I felt attached to this stranger in a way that differed from how I generally felt about participants. She was like me. My research project, and my broader desire to pursue graduate school to study a group of people I identify closely with, was driven largely by a need to understand my purpose in life. As Maya spoke, I quickly realized that my perception of our close proximity to one another could help me move toward achieving that goal, a feeling that intensified once she started talking about her illness’ relationship with death. I have long thought about the issues surrounding death that Maya raised, but I needed her to help me give words to my unspeakable sentiments around it.

As we neared the end of our conversation, I asked Maya: “What does the word life satisfaction mean to you?” I had asked this same question to every participant, and they had each met it with a broad, general idea of what it means to live a good life. Catching me off-guard, however, Maya responded,

This is very morbid. I never wanted to have a funeral until I watched John McCain’s funeral when I was 16 or 17. And I just remember, like, listening to the Navy College choir sing. They were singing the Navy hymn and I can’t remember off the top of my head now. But I just remember like seeing, hearing them, and then listening to Renee Fleming singing and then seeing like this cathedral full of people, and then like John McCain, and thinking to myself, like, “Wow. Like, he died. And people… and we have this to like, prove what a legacy he had.” And that was the first time that I was like, “No, I want a funeral. And it better be televised.” I mean, it was John McCain’s funeral. Like it was a, it was a whole day event. It was like, I woke up, and there were live streams, like his body leaving Arlington and the whole day. And I remember being on the treadmill at Planet Fitness and looking at one of the screens and just walking for an hour watching this happen. I was like, “Yeah, this, like I better, you know.” And that was the first time that I was like, “Okay, maybe this isn’t like the worst thing ever.” And so ever since that my biggest fear has been failure that I would, you know, that I would… And so that’s a really big part of like, my happiness, and my plans for the future is riding on doing well in school and being able to go to grad. school, and being able to get into programs and then getting a job. And like all of that.

In this moment, Maya made her keen awareness of death and the importance of leaving a legacy clear. She never paused as she recalled specific details from John McCain’s funeral, from the type of hymn to the name of the person singing, to the piece of gym equipment she was on at Planet Fitness when she saw it. As I observed Maya’s swift, nuanced recollection, I began to suspect that she was verbalizing a memory she had encountered numerous times before speaking with me. She knew this memory so well that she barely had to think as she recalled it. Toward the end of the passage, however, as she started to connect the memory of the funeral to her own vision for leaving a legacy, I noticed that the words stopped flowing as smoothly. When she recalled, “And so ever since then my biggest fear has been failure that I would, you know, that I would…” she did not finish her sentence for the first time since she had begun speaking. Rather, she moved directly into talking about the implications of how that awareness of the need to leave a legacy when she dies has impacted her goal-orientation. The context around the passage suggested to me that Maya was thinking about the fear that she would die without a legacy in the sentence she did not finish.

As I nodded profusely during this moment of hesitation, I wanted Maya to know that I understood the unspeakable emotions she could not utter; I wanted to validate her choice to leave that fear of dying without a legacy unspoken. Although it is impossible for me to know with certainty why her words stopped flowing so smoothly toward the end of the passage, it appears as if withholding talk could be a form of Maya’s silent attending that may enable greater authentic attention to her finitude. Withholding talk around the subject of her life’s finitude appeared to serve to give such a complex, sacred topic the dignity that it deserves.

Struggling to hold back tears in the face of Maya’s retelling of the funeral, I yearned to verify our connection through a pointed follow-up question that would help me better understand Maya’s connections between her chronic illness and her considerations of death. Her voice never changed from its dynamic, upbeat tone as she described her recollection of how she wanted to be remembered. As Maya discussed death in the passage above, she never made any explicit remarks that signified that her considerations of death were embedded within her awareness of her chronic illness. Yet, I started to piece together some of the reasons I had come to feel so attached to this total stranger—from our mutual perkiness to our planning every detail of our personal and professional lives at a young age, I felt comforted by the idea that this person and I might share a similar orientation toward our illnesses. I suspected that Maya thought about her death the same way I think about mine, and for me, that perception of death is inextricably bound to my chronic illnesses.

Remembering this moment alongside the rest of Maya’s interview, I cannot pinpoint with certainty the factors that led Maya to talk about the funeral. She knew that the response would be unusual from the moment she started speaking, as she began her answer with the caution, “this is very morbid.” Earlier in the conversation, we had established that we were both Catholic while joking about her choice between her college and a Catholic institution. That moment of spiritual connection struck me, and judging by the way Maya’s eyes perked up when I revealed that I was also a practicing Catholic, I believe it may have struck her too. Within my higher education circles though, I hear of most people proclaiming that they were “raised” Catholic when the topic arises in conversations. For both Maya and me, however, we both firmly proclaimed that we “are” Catholic. We both subscribe to a religious faith, which lends toward our contemplating questions about life’s purpose on a spiritual level regularly (not to suggest that non-religious people do not also contemplate purpose in terms of spirituality, but rather that practicing an organized religion prompts us to think about it every time we attend services). I wondered if that shared identity in faith, and perhaps her not expecting to find such a shared identity at her secular higher education institution, made her more comfortable in talking about death with me during that moment.

Likewise, she brought up the fact that her grandmother lived with her family while she was growing up, and that she thought about the process of aging through watching her grandmother often. I wonder if being surrounded by her grandmother as a sort of symbol for aging made talking about death and funerals feel more natural to Maya than it may have for other participants. These two factors may well have contributed to Maya’s response to the life satisfaction question, and neither factor appears to stem directly from her experience with chronic illness. I could have attributed the response to several factors related to Maya’s life and followed up around those, or I could have forgone a follow-up and moved on to the next interview question.

Yet, some type of follow up felt warranted, in light of the powerful information Maya had just shared. My academic grounding in the disability studies literature had not prepared me for a follow up, as Maya was not referring to a form of social death or marginalization, but rather her capital “D” death. To some extent, Pinar’s (1992) guidance from the field of curriculum studies provided useful information in the call to discuss death associated with chronic illness more openly in curriculum. Yet, that guidance still left lingering questions for a one-on-one student interaction like this one—How much do I push her to explicitly discuss her feelings toward her death? Should we be discussing death more openly on a societal level within classrooms, or in individual cases of students like the one here? As a social science researcher, I felt that my primary task was to gather relevant information about Maya’s college experiences that could inform policy and practice in the least intrusive ways possible. As a chronically ill person who wanted to help other chronically ill people navigate the most pressing challenges associated with illness, however, venturing into these more uncomfortable connections between chronic illness and death felt necessary when Maya introduced the topic.

Feeling unprepared by training to adequately address this connection between death and chronic illness, I leaned into my personal experience as someone who is also chronically ill. I asked her, “Do you think about your mortality a lot?” Neither of us flinched, exchanging subtle smiles of what felt like further shared recognition. I briefly disclosed my chronic illnesses at the beginning of each interview in an effort to build trust and to help participants better understand why I was undertaking this work. In that moment, I wondered if she had already connected the dots, the unspoken recognition that we would both be on the same page about considering death in the context of chronic illness. In one moment out of several where she referenced death in our conversation, she responded,

I think a lot about like, you know people will wonder if they’ll die in a tragic accident, and I’m like, no, I feel like my death is going to be long and slow and painful. Because that’s what, like that’s, that is what I feel like I’ve been sought out for.

With that response, Maya illustrated how chronic illness informed her conception of her death. Although she did not know for sure, the phrase, “I feel like” suggested that Maya had a strong inclination of her fate that was to come. Her seamless effort as she spoke, coupled with her burgeoning grin, suggested that she was not necessarily upset over her likely fate. She had clearly given it a lot of thought and knew what she was talking about, and her facial expression toward me during this moment of complex intersubjectivity (Benjamin, 2018) made me think that she realized I knew too.

After we finished the interview, I sat alone in my apartment and cried. I continued crying for most of the day, tears welling up into my evening class. I did not cry because Maya’s story was news to me. I had thought about the specific manner and timing of my own death from the moment I got a diagnosis that allowed me to clearly visualize it. Crying became my response in a moment of helplessness, where I knew that I could not protect Maya from the path she was heading down as she raced to establish her legacy. I felt like I knew the heartbreak that trying to speed through life in anticipation of death can cause, but I also understood her choice and felt an urge to validate it.

My inclination to both protect Maya and validate her choices were both mutually animating and simultaneously in tension with one another. When I consider the term “protect” from a pedagogical standpoint, I think about teaching others to do something that will minimize risk for pain or stress in the future (e.g., similar to the phrase “protective factors” meant to mitigate risk; American Psychological Association [APA], 2023). From a disability studies perspective, I considered the need to protect capable chronically ill young adults from social structures that relegate them to lesser on the basis of their disabilities (Davis, 2016). Yet, this concern for protection from society could not in itself protect chronically ill young people like Maya from the window of insight into death that their illnesses offered. In this regard, there also exists a subjective dimension that infuses my memory of being in a position like Maya’s and reflecting on what I would have wanted someone to do to help me navigate the particular window into death that came with my own chronic illness diagnoses.

Death-centric pedagogies in disability studies/curriculum literature

As I grappled with the notion of chronic illness informing Maya’s conceptions of death, I shifted from my initial inclination of trying to protect chronically ill college students like Maya from death toward focusing on how to prepare them to make sense of it via my pedagogical practices in the classroom as an aspiring university professor. I turned to disability studies as a means for helping her to make sense of her unique experience with illness, and to curriculum studies as a means of teaching her what she might do with these considerations that seemed to be at the forefront of her mind. Although scholarship in the fields of curriculum and disability studies do not often contend with notions of death and illness, some articles have begun to consider how we can prepare students to meaningfully engage in conversations around death and, in doing so, prompt students to consider the experiences of illness in helpful ways.

For example, Pinar’s (1992) “Cries and Whispers,” a chapter in Understanding Curriculum as Phenomenological and Deconstructed Text, introduced the notion of death as part of curriculum, stating that,

My own view is that the concepts and realities of death need to be integrated in everyday conversation, in everyday curriculum, not treated as exotic topics of extreme anxiety. I think it is when death is treated as distant that it becomes terrible and provokes fear. Life leads to death. And while one ought not to tempt death, perhaps one ought to make friends with it. Until we parents and teachers have confronted the fact of our impending deaths, we cannot aspire to impart a sense of the presence of death in life to our children. (Pinar, 1992, p. 99)

In this passage, Pinar introduces the idea of demystifying death within curriculum literature as a means of easing anxiety around it. Although the passage does not specifically refer to death in association with chronic illness, the broader lessons about how we teach chronically ill and other youth about death may lead to a better understanding of the foreseeable deaths associated with certain many chronic illnesses. To teach about death, Pinar points toward the need for reflexivity on the part of educators. If one understands a teacher’s primary job as passing down what they know through their pedagogies, death becomes a challenging topic to incorporate into curriculum literature, as no living person fully knows what it means to die. Pinar notes that a death-oriented curriculum requires that teachers confront their own mortality. Similarly, he suggests that educators must be transparent about their own grappling with death as they engage with their students.

Despite the challenges associated with teaching about death in the classroom, Pinar clarifies why this inquiry is so vital. He explains that evasion of death can lead to dismissal of the chronically ill, writing that, “Just as we evade our deaths, we look the other way at the dying among us. We hide them, in nursing homes, hospitals, even on the streets, where we look the other way as outstretched arms and voices beg for life” (Pinar, 1992, p. 93). In this sense, it becomes apparent why conversations around experiences with chronic illness must engage with death in curriculum. Pinar urges us to ask vital questions in response to how we treat death and the dying in education—Whose deaths can be mourned? What lives are considered potentially vibrant, alive, or meaningful? To ignore these concerns is to perpetuate educational structures that do not value chronically ill lives where considerations of the nature of one’s death may be at the forefront, but instead cast them to the periphery of education (e.g., consider the lack of place for chronic illness in both standard and special education at the K-12 level).

To emphasize the importance of considering death in curriculum, Downey (2022) argues for incorporation of the human corpse as a means for teaching about death and, by extension, life beyond the individual. Downey describes this “deadagogy” lens as considering, “death’s potential for resistance, experimentation, revolt(ing) protest, and other educative commitments” as the basis for using the corpse as a means for bringing about life, or a revitalizing understanding of the world outside of the structures that currently govern it (Helmsing & van Kessel, 2020, p. 141). By focusing on death in this way, classroom instructors can begin to elucidate meaning in the connections between illness and death in a way that transcends the physical body (and thereby falls in line with disability studies’ decentering of innate deficits), thus making life more relevant beyond the anticipated expiration date associated with many chronic illnesses.

Although deadagogy is anchored in political resistance to structures that govern social life, it is important to consider these constructs with attention to how they might be leveraged to account for groups of people (e.g., the chronically ill) whose lives depend on modern medical advances. While numerous chronically ill college students I interviewed discussed their participation in student activism and inclination toward political resistance, many also expressed a keen awareness of their dependence on modern medicine. Take Ian (a pseudonym), for example, who talked to me about being involved in hemophilia advocacy organizations since he was a young child. Ian knew a remarkable amount of specific terminology and history surrounding hemophilia, which he attributed to his long-standing participation and advocacy work as a member of the “hemophilia community.” When he transitioned from discussing hemophilia’s history to his own relationship with death, Ian calmly recalled that, “100 years ago, I’d be dead.” Much like Maya, Ian did not seem bothered as he discussed the relationship between his chronic illness and death. It seemed that Ian had given the matter serious thought. As he continued to describe the medical advances that made his life possible, it became clear that Ian understood his life’s fragility, namely that modern medical advancements were responsible for his being able to live. Although Ian never ventured into the details of how he might one day die due to complications associated with his illness, as Maya did, he clearly understood that the distance between Ian’s life with hemophilia and his death would quickly be removed in the absence of the medical advances he mentioned.

In his work on death in curriculum, Downey advances a notion of affirmative ethics that “asks us to be both highly critical of and willing to work with (to move beyond) the constraints of advanced capitalism; the affirmative aims to be both realistic and hopeful, critical and creative” (Downey, 2022, p. 27). Indeed, affirmative ethics appears to provide a feasible framework for working with people like Ian, who seek to change systems that oppress chronically ill individuals with creative, advocacy-rooted solutions, yet who possess a strong sense of realism about the nature of their conditions and the medical advancements that have made their continued existence possible. Through such a lens, we can move closer toward death-centered pedagogical practices that better account for experiences of chronic illness in various curricula.

The concept of affirmative ethics might allow for us to account for different manifestations of one’s awareness about the relationship between chronic illness and death without necessarily prioritizing certain ways of being over others. For example, consider Ian and Mays, two college students at the same institution who both appeared highly aware of the relationship between their chronic illnesses and death. Ian had been part of hemophilia advocacy organizations since he was a child. Unlike Maya, a music major who had a vested interest in the arts, Ian’s interests appeared to be a balance between social advocacy (through his hemophilia work) and capitalist-driven pragmatic considerations, as exemplified through his own business major and concerns about insurance and income earning potential. Whereas Maya appeared to yearn for validation of her life in a more spiritual sense, Ian appeared more concerned with leveraging the knowledge about his chronic illness’ association with death as a means to drive more tangible social change. Yet, both Ian and Maya presented powerful awareness of the relationship between chronic illness and death and used that awareness toward broader purposes that yearned for some form of affirmation. In this sense, affirmative ethics presented a promising concept for working with both of them to validate how they operationalized their awareness of the relationship between death and chronic illness.

Until this point of the paper, I have discussed multiple college students’ expressed awareness of the relationship between their chronic illnesses and death, as well as how curriculum scholars might begin to content with that awareness using theory. I am not the first to consider illness’ role in relation to curriculum, as others have raised chronic illness and disability’s lack of representation in curriculum and have attempted to bridge that absence through autobiographical inquiry (Vaughan et al., 2019). Such work has attempted to bring disability studies, special education, and curriculum studies into conversation with one another through the authors’ recollections of self-discovery. Yet, in considering the purpose of the present inquiry, I note that left my interview with Maya holding a desire to not only learn, but to clearly operationalize at least a glimpse of what I had learned in order to protect students like her in the future via the affordances that curriculum can provide. Like Ian, I have a vested interest in securing concrete social change, which left me considering how I might use what I had come to reconceptualize through these conversations to form a tangible recommendation for educators (at the college level and otherwise) who wish to affirm similar recognitions of the relationship between chronic illness and death in their classrooms.

Examples from films that elucidate the relationship between death and chronic illness

Previous curriculum studies scholarship does not only allow for consideration of one’s subjective experience in educational structures, but instead uses biographical and autobiographical experiences to lend toward imaginative possibilities and insight that shape the information students carry forward from the classroom (Pinar et al., 1995; Slattery, 2012). Understanding the present biographical situation, in this case centering Maya and Ian’s expressed recognition of the relationship between chronic illness and death, becomes a base for introducing these complex topics about the relationship between chronic illness and death into curriculum. To remain authentic to the complexities of the biographic situations presented while simultaneously offering concrete solutions to operationalize the lessons learned through biographical exploration, I turn now to tangible examples of ways that we can introduce these topics into our pedagogies via film.

Existing curriculum scholarship notes that films have historically been useful for attracting students’ attention and interest, as well as helping them connect theory with the real world (Aravopoulou et al., 2017). Indeed, for students and educators alike, films can play a central role in helping us understand experiences of illness. Although other art forms similarly illustrate value in chronic illness, I contend that films carry the ability to distort linearity and thereby directly show viewers the importance of our attention toward the process of life alongside the outcome of death when considering experiences of chronic illness.

First, consider key takeaways from the film Arrival, where Dr. Louise Banks (Amy Adams) has mastered the nonlinear language taught to her by alien lifeforms visiting Earth. The film begins by suggesting that Banks just lost a child to a chronic illness before the aliens’ visit. Throughout the film, she recalls flashbacks of a young girl that intensify as she learns this new, process-oriented language (the language, for example, refers to death as “death process”). In the final scene, it becomes clear that through mastering this nonlinear language, Louise has been remembering a future vision of her daughter, who will die from a chronic illness during adolescence, before Louise ever chooses to conceive the child. This attention toward nonlinearity that enables Louise to incorporate the future alongside the present is consistent with Pinar’s reference to Huebner’s understanding of death in curriculum, which suggests that considerations of death in curriculum “make possible those moments of vision when the student, and/or those responsible for him, project his potentiality for being into the present, thus tying together the future and the past into the present” (Pinar, 1992, p. 99).

As Louise utters the quote, “Despite knowing the journey and where it leads, I embrace it, and I welcome every moment of it,” the screen flashes to images of her daughter, Hannah (a palindrome, meaningful because of the linearity distortion in spelling a name the same way forward and backwards) as Louise bounces the child playfully when Hannah is a baby and later teaching her how to spell her name the same way forward and backward. Upon learning this language, which allows Louise to view her own life in its totality, she can no longer separate Hannah’s life from how it ends. The memories of the “journey,” or the process of Hannah’s life depicted in the flashbacks, become central to the meaning Banks ascribes to her own life in its totality. She will not choose to avoid the painful end to her daughter’s life by choosing not to conceive her, as she cannot do so without wishing away all the good that came from Hannah’s existence.

As I reflected on this film in connection with my conversation with Maya (and to some degree, my conversation with Ian as well), I considered how helpful it may have been to show her these scenes as we discussed the relationship between chronic illness and death as a means to affirm her in a way that was consistent with the notion of affirmative ethics. I wanted to be able to validate her recognition of the relationship between illness and death, but I noted how an explanation alone could not do what the film itself could through its ability to weave in and out of vignettes that illustrated the entanglement of positive moments in Hannah’s life with the difficult ones surrounding her death. To truly grasp the lessons about love and chronic illness “despite knowing the journey and where it leads,” Maya would need to watch the film and know to look for it. I could not convey in words to her alone what it means to see flashes of all the good alongside the sickness and lose the ability to disentangle the two in the same way as that “aha” moment in the film could. But I could plant the idea to watch the film with a chronic/terminal illness-affirming lens for Maya and other students like her.

Although Arrival masterfully highlights the importance of process in assessing life related to chronic illness, it is not the only widely acclaimed film to do so. Films possess a fairly unique ability to clearly depict time in nonlinear ways without the viewer focusing much on the order of events’ progression. Until the final scenes of Arrival, for example, it is not clear that the film ended at a scene long before where the film opened. Pinar et al.’s (1995) call for incorporation of the future into the present understanding of curriculum becomes plain to see here, as Louise’s present and every choice she makes in it are explicitly bound to what she knows about the future. Once she sees the future, her daughter’s chronic illness and subsequent death, her choice to conceive the child becomes especially powerful. Similarly, when we encourage learners to make explicit the futures they associate with chronic illness, their validation of the chronically ill life becomes more meaningful to students like Maya and Ian.

Aside from their ability to distort linearity, films can personify abstract constructs like death and illness. In Collateral Beauty, successful advertiser Howard Inlet (Will Smith) writes letters to Love, Death, and Time following his young daughter’s death from cancer (the child remains nameless through most of the film, as Howard cannot bring himself to say her name out loud). His coworkers pay actors to represent Love, Death, and Time to prove that Howard is mentally unsound and unable to make decisions for their company. The pairing of time with death here mirrors the same call Pinar puts forth in his call for incorporating death into curriculum, stating that, “death brings time into focus. It makes this moment we share together precious, worthy of caring, worthy of presence” (Pinar, 1992, p. 99). As Howard engages with these three figures, he begins to heal while simultaneously growing closer to a woman who viewers later learn to be his child’s mother. At the end of the film, Howard arrives at the woman’s house and the two watch a home video of Howard gleefully playing with their daughter. Howard looks at the child laughing and spinning with him on screen and is finally able to say his daughter’s name, Olivia.

By speaking her name, Howard acknowledges Olivia’s personhood—the intertwined beautiful parts of her personhood and the tragic ending. A final scene cuts to a flashback from Olivia’s mother’s last moments in the hospital. In the flashback, the woman is approached by the same actor who was charged with representing death to Howard earlier in the film (indicating that the figures were not actors but in fact, Love, Time, and Death),

Death: [sitting in hospital hallway] Are you losing somebody?

Olivia’s mother: I’m sorry?

Death: Who are you losing?

Olivia’s mother: [breath trembling] Um, my daughter.

Death: Just make sure you notice the collateral beauty.

As the film ends, viewers see the love and resolution between Howard and his wife. Only when Howard can see the collateral beauty in the process of his daughter’s life, which comes to fruition through watching positive moments of Olivia gleefully playing with Howard on a home video, can he find peace and begin to move on in the aftermath of her death.

This film teaches similar lessons to those presented by Arrival, but a few key differences about the relationship between death and illness that should be noted. First, Collateral Beauty largely focuses on a father’s journey of coming to accept this relationship, whereas Arrival focuses on a mother’s journey. For people like Ian, who talked about his father as being a central figure in his care, illustrating these types of lessons through a father’s perspective may be important. Second, Arrival never names the illness that illness that ultimately kills Hannah, only that the illness is “rare and unstoppable.” Collateral Beauty, on the other hand, makes it clear that Olivia dies on cancer and that she was only six years old at the time of her death. Although it may be argued that Arrival implied that Hannah also had cancer, the ambiguity around her diagnosis might be helpful for generating lessons that are more applicable to chronic illnesses more broadly, as opposed to terminal illnesses alone. Hannah’s age at the time of her death, which appeared more similar to Ian and Maya’s ages as college students, may further be a point of resonance that is useful to consider when determining which film(s) to select when using film to teach about the relationship between chronic illness and death. Finally, it should be noted that I never collected racial demographic information during our interviews, but that Maya and Ian both presented as being white. Arrival’s key actors also present as being white, whereas the key actors in Collateral Beauty present as people of color. These types of racial considerations may play a substantive role in selecting films where students can see themselves in the characters beyond chronic illness alone.

Films like these illustrate how authentic affirmation of the relationship between chronic illness and death can incorporated into curriculum. In both films, central meaning is assigned to moments where the lead actors recall positive memories from their children’s lives in process, memories that cannot be detached from their children’s illnesses and subsequent deaths. Notably however, neither film focuses on beauty in the life after an illness is acquired, which creates problems for addressing illness in terms of people like Maya—the chronically ill who can clearly visualize their deaths but know that death remains at a distance for the time being. Still, by offering a means for understanding the value in perceiving life as a process despite death being known from the beginning of the narrative, we can meet chronically ill students with a means for teaching them to understand value in their lives despite their “knowing the journey and where it leads.”

A path forward for engaging with film to elucidate the relationship between chronic illness and death

Our lives do not end with a diagnosis, nor do they end at the initial moment where chronic illness becomes physically disabling. As Maya reminded me, we live on—to go to graduate school, to get jobs, to build a life with a partner and have children of our own (all aspirations that Maya expressed during our conversation). In his recalling of how he would have been dead 100 years ago, Ian reminds us that numerous chronically ill people are living far longer post-diagnoses than they have in the past, and they are not spending that extra time in hospital beds waiting to die. To the contrary, these participants demonstrated that they are fully engaged in the process of living, and that their lives matter despite their potentially being able to see where their journeys may end via their chronic illness diagnoses.

Although my study focused on college students, the need for consideration of the relationship between chronic illness and death extends beyond higher education alone. Maya, for example, went through the process of having an undiagnosed chronic illness all throughout high school, while Ian has never known his life without hemophilia and Crohn’s Disease. Chronic illness can come into our lives at any moment, and with it can come the increased awareness of the future one’s life will hold. In a curriculum that truly values chronically ill students, it becomes educational institutions’ ethical responsibility to account for such students’ awareness of their futures and to draw out how that awareness shapes how students experience curriculum in the present (Pinar et al., 1995). I consider the operational means through which we can teach learners to engage with their own and others’ experiences of chronic illness in relation to death as being essential to crafting a curriculum that values these students, and I contend that film may be a tangible way to move toward that aim.

Indeed, if we hope to truly prepare individuals for life (which may well include the acquisition of a chronic illness at some point) through any level of formal education, curriculum must account for the relationship between chronic illness and death. Films like the ones noted above represent a viable path forward for engaging with chronically ill students who seek to better understand the windows of insight into death that their illnesses may provide, thereby suggesting that such modalities must be incentivized and valued within curriculum more broadly. By incentivizing educators to incorporate death-centered pedagogies, we can pave a pathway for affirming the relationship between chronic illness and death as being a truly worthy of curricular attention.

Acknowledgments

I would like to acknowledge the unwavering support and contributions of Dr. Brian Casemore.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Notes on contributors

Karly B. Ball

Karly B. Ball is an incoming postdoctoral research associate at Michigan State University. Her work focuses on disability/chronic illness in postsecondary contexts, higher education disability policy, and mixed methods research.

Notes

1 I acknowledge the validity of both person-first and identity-first language when referring to chronic illness and/or disability. Given Maya and Ian’s use of identity-first language during our interview discussions, identity-first language is used throughout this paper.