WHEN, at the age of 21, I was diagnosed with incurable brain cancer, I discovered how serious illness changes our life story. Following a diagnosis like this, the ways that we previously understood ourselves and our situation no longer make sense. Cancer patients often find that questions like “How are you?”, or even “Who are you?”, become very difficult to answer; a life that may once have seemed like a gradual journey towards a clear destination can be disrupted by the physical and psychological roadblock of cancer.
Medical sociologist Arthur Frank describes this as “the loss of a destination and map” caused by serious illness. Faced with cancer, we can lose sight of where we are going and how we’re getting there, and that is what I experienced.
The story of the cancer that will end my life began when I was 16 years old. While playing football with my father, I collapsed and had a seizure. I was rushed to hospital in an ambulance. At a later appointment, a doctor decided that what had happened to me was a “vasovagal syncope”; in other words, he thought I had fainted.
It is telling that I accepted this unquestioningly. At this point, the story I told about myself was still that of a sporty, active, “normal” teenage boy who was in good health. Many more seizures followed, and with them came a swelling sense of unease, a burgeoning awareness that something was seriously wrong in my body.
After my cancer diagnosis, I gradually discovered that the inspiration and resources I needed to begin constructing a new life story were all around me. Without searching proactively for stories to borrow from, I came across people and narratives that enabled me to begin telling my own story. Often unexpectedly, I discovered stories that helped me to express the impact of cancer on my body, mind, and soul.
I first started to find fragments of a new story in the period after my cancer diagnosis in which I endured seven weeks of radiotherapy, followed by a year of chemotherapy. These treatments were unpleasant and arduous, but they did provide me with something crucial when it came to reconstructing my story: time. The radiotherapy necessitated daily visits to the hospital for treatment sessions, but, within this schedule, there were gaps for rest and recovery, as well as vigils in hospital waiting rooms that frequently stretched for several hours.
The collateral damage caused by the treatments forced my body into a state of permanent healing that left little room for excitement or exertion. This meant that I had many stretches of time to fill with peaceful, undemanding activity in which I felt unable to do anything more ambitious than thinking, reading, watching television, or talking to my family. Yet, what I would eventually discover is that when it came to finding meaning in my experiences of illness, and learning to tell my new story, each of these activities would prove vital.
MY INTEREST in theology had developed into a desire to study how literary fiction can enrich our spiritual searching. The skill and insight with which authors like Dostoevsky, George Eliot, and Primo Levi used their talents to shed light on our spiritual, existential struggles had arrested my attention. Their vivid, thrilling renderings of guilt, doubt, ambiguity, loneliness, and faith became the subject that captured my scholarly imagination.
It is surprising and embarrassing that it took me almost a year of studying before I noticed that my academic interests and personal illness story were converging around a common theme. Whilst my time as a postgraduate student was devoted to trying to understand how stories by remarkable authors could reveal the complexities of our innermost thoughts and feelings, my journey as a cancer patient was being determined by the impact of such stories on my life. Stories and storytelling had become the focus of both my intellectual and spiritual explorations.
Karlee BowlbyEwan Bowlby
But there was an important difference between these two forms of exploration. Whilst my academic study of stories was limited by set texts, recommended readings, and convention, my personal searching could lead in all directions. Academic courses inevitably focused on “classics” and notionally “high” art, but real-life exploration is not constrained by predetermined categories and prejudices. I had found that I was just as likely to come across a story that helped me to understand myself and my illness scrolling through Netflix as I was browsing Penguin Classics.
When it comes to what I’m calling “the arts” or “culture”, I mean that in its widest sense, embracing everything that patients might come across. Since the turn of the century, millions of people have read John Green’s novel The Fault in Our Stars (2012), about love, cancer, art, and spirituality. Tens of millions have watched several series of Breaking Bad on Netflix (2008-13), a direct, uncompromising exploration of the existential turmoil cancer can cause.
Many more of the most successful films, television series, and novels of recent times, such as Fargo (2014-), Cold Feet (2016-), A Monster Calls (2011), The Bucket List (2008), Catastrophe (2015-19), Orange is the New Black (2013-19), Mad Men (2007-15), After Life (2019-), Talk Before Sleep (1994), The Fault in Our Stars (2012), The Kominsky Method (2018-), and Deadpool (2016) have dealt in detail with the impact of cancer upon people’s lives. These artworks are bringing the “big questions” cancer raises to the foreground; so studying how they achieve this, and how people respond will give vital information about the interrelation of cancer, art, and spirituality.
JOHN GREEN’s bestselling novel The Fault in Our Stars is an excellent example of what popular, mass-media artworks can offer a cancer patient in need of spiritual care. One of the most widely read explorations of the problem of suffering ever written, Green’s young-adult novel has become arguably the most famous fictional exploration of living with cancer.
The Fault in Our Stars is a search for spiritual nourishment amidst stretches of time disrupted or truncated by cancer. Green spent ten years working on the novel after leaving his position as chaplain at a children’s hospital ministering to young patients and their families. Overwhelmed by what he encountered in the hospital, Green says that he “found the experience almost too sad to bear”.
Before taking up the post, Green had studied religion and literature, but he explains that the “fancy theological ideas from reading lots of theological books didn’t really matter much when it came to being with kids who were dying.” Yet rather than abandoning the subject, Green says he left the hospital wanting to “write a novel about sick kids”, conceiving The Fault in Our Stars as a means of “trying to understand some of the ways through that [experience]”.
In turning to popular fiction to find meaning in his traumatic tenure as a hospital chaplain, Green set himself apart from many influential theological responses to cancer. Green sought out a wider audience and a new medium. Consequently, The Fault in Our Stars is a fictional narrative that can afford affirmation and inspiration to cancer patients with diverse spiritual perspectives, as they contend with the power of cancer to dictate and damage lives. Both cancer patients and caregivers have specifically identified The Fault in Our Stars as a novel that can accurately reflect real experiences of cancer.
A CANCER diagnosis forces a patient to search for meaning amidst pain, suffering, and a heightened awareness of their own mortality. In a society which is often accused of “weakness” in its dealings with these subjects, it is striking that millions of people have chosen to devote several hours to watching fictional character Walter White struggle with inoperable lung cancer in the television series Breaking Bad.
This Netflix production is the foremost example of “a TV landscape that’s awash with death” says Craig Simpson: several recent series in which characters must “come to terms with their own mortality”. According to James Monaco, the “pervasive influence of television” means that shows like Breaking Bad are now “part of our reality”, and its popularity suggests that people do not simply want to keep matters of death and suffering out of their everyday lives.
I believe this influential, accessible modern medium could be used in spiritual care to enhance viewers’ capacity for imaginative engagement with the theme of cancer and death. The story of Walter White deals directly with this crucial aspect of cancer patients’ experiences.
Victor Frankl writes that a patient’s search for meaning is often hampered by a “lack of skill and language to deal with death” in modern society. Many sociologists, psychiatrists, and cultural commentators have claimed that contemporary Western society is responsible for a dangerous “denial of death”.
Breaking Bad conveys in dramatic form how, for a cancer patient trying to come to terms with the threat to hope and life posed by their disease, denial is not enough. The expansive scale of the series gives its viewers an opportunity for empathetic engagement with characters conditioned to see our human relationship to death as a battle which can never be won: a refusal to recognise the inevitable which leaves little room for a search for meaning.
As well as deepening its audience’s understanding of the dangers of denial, Breaking Bad also uses the unique qualities of TV in unconventional approaches to cancer and mortality. Devices like shot selection, sequence, and editing allow the camera to capture perspectives beyond the fear and confusion characters display, adding a depth of meaning to the drama. This invites viewers to consider the possibility of creative hope found amidst the chaos of cancer.
In my own experience, I found that Breaking Bad directly addresses this area of cancer patients’ experiences, presenting audio-visual imagery which could transform viewers’ attitudes towards the fragility and brevity of human life, giving cancer patients new perspectives on denial, fear, and mortality.
A show like Breaking Bad can introduce patients to paradoxical possibilities of life, hope, and strength found amidst death and disease. Carers can use Breaking Bad to introduce patients to the notion of positive paradox, giving them the “renewed skill set for facing their own mortality that ‘people today require”.
An elderly woman in a cancer ward trying to express her experience of hospital drew a picture of her surroundings. Above the image of the ward, she wrote the words “faith”, “hope”, and “care”, but below it she put “shock”, “wilderness”, and “frightening”. Her drawing became a constructive collection of contradictory reactions: a thoughtful rendering of what John Swinton calls “creative resignation”, which acknowledged fear and shock, whilst preserving faith and hope.
IN AN enigmatic scene towards the end of Hollywood “cancer comedy” The Bucket List, Cole, played by Jack Nicholson, is reflecting on the journey he has made with his friend Carter (Morgan Freeman). As two terminal cancer patients, Cole and Carter decided to use their remaining life to tick off items on an extravagant “bucket list”, leading to a series of adventures full of levity and laughter.
As he tries to understand the significance of these adventures, Cole turns to his colleagues in a meeting and asks: “Have you ever read the Divine Comedy?” Seeking a means of expressing the transformative impact of fun and frivolity on his life with cancer, Cole chooses the example of a theological, “Divine’” comedy.
A failure to take comedy seriously is a feature of many different disciplines, including those tasked with addressing the human problems of death and disease. Both oncologists and patients have identified humour as a means of “spiritual coping” that can improve mental and physical wellbeing, but carers are still searching for what are called “effective humorous interventions”. At the moment a chasm exists between what cancer patients need and desire regarding humour, and the reality of what their care provides.
The Bucket List is firmly focused on entertaining audiences by generating laughter and enjoyment. It sits within a category of films that is frequently accused of being “vulgar”, dismissed by scholars as “mindless” entertainment. Certain critical responses to The Bucket List characterised it as a “popcorn picture about death”.
There’s even an implicit sense in a few reviews that those who enjoyed The Bucket List and its portrayal of “cancer that is nothing like cancer” should feel ashamed, with one reviewer suggesting that if you are won over by the film’s “cheerful defiance” it is important “not to let your friends know”. The underlying assumption of critics appears to have been that mixing illness and irreverence constituted a “lazy” and “disturbing” trivialisation of this dangerous disease.
I believe comedy films like The Bucket List allow viewers to explore different ways of harnessing the power of comedy to change a life affected by cancer. They demonstrate how artworks can give viewers a means of vicariously experiencing different forms of comic response to cancer, testing out how humour might add to their own search for meaning.
The globe-trotting exploits of two dying men trying to cram fun and laughter into their final months offers audiences this opportunity. Furthermore, the increasing popularity of “cancer comedy” as an “emerging trend” in popular culture implies that there is an appetite for accessible, entertaining narratives that allow people to explore ways of combining cancer and humour.
SO WHAT exactly is the potential value of humour in this kind of situation? I’ve explored the academic debate about this among theologians and others in my doctoral work. What I believe is that theology helps us to discover that humour can really help people somehow see differently and rise above the situation they find themselves in. Hugo Rahner observes that “fun, irony, and humour” sometimes “seem to get more easily — because more playfully — down to the truth”.
Ironic, dark, or grotesque humour often “employs distortion paradoxically as an instrument of truth”, revealing the root of things by disturbing our preconceptions. Humour’s relationship to the truth is also sometimes characterised by its propensity for getting at those things which defy conventional logic and ordinary speech.
Playfulness and folly are also often discussed by theologians defending the religious significance of comedy. For instance, Conrad Hyers argues that comedy is spiritually vital because it can remind us of our “intrinsic freedom and flexibility”, by encouraging us to play around with possibilities and boundaries. Because of this, “ludic” comedy can take the shape of a “fantastic protest against the limitations of worldly existence”.
This belief also seems to lie behind Hugo Rahner’s theology of play, in which the Christian Homo ludens — “man of play” — is a “saint” who performs “a children’s game before God” from which “every vestige of the tragic has completely disappeared”. He asserts that a saint, far from being a figure associated exclusively with sobriety, can offer spiritual insight by playing a “children’s game” and delighting in disregarding the “limitations of worldly existence”.
IN THE latter stages of the 19th century, George Eliot used literary fiction to draw attention to the problem of spiritual care — a problem that remains unresolved today. In typically prescient fashion, Eliot satirised the increasingly apathetic, blasé attitude towards spiritual concerns identifiable within the medical professions in her novel Middlemarch.
Through the character of the ambitious young doctor Tertius Lydgate, Eliot revealed how spiritual matters had come to be seen as an outdated irrelevance in a clinical context. When asked if he “recognises the existence of spiritual interests” in his patients, Lydgate is unwilling to address the subject, only noting that “those words are apt to cover different meanings to different minds”.
In recognising that the personal, subjective nature of spirituality was at odds with the medical move towards empirically verifiable and notionally objective things, Eliot exposed the tension that continues to hamper the provision of spiritual care in the contemporary NHS. Many clinicians still see spirituality as a “meaningless term” or refuse to accept that it is a “valid concept” within a healthcare context, because of its vague, subjective qualities.
Yet, integrating the arts into spiritual care can facilitate care practices and resources that accommodate “different meanings” and “different minds”. Indeed, Eliot’s use of literary fiction to probe the relationship between “spiritual interests” and medicine is itself an illustration of the value of the arts as an alternative means of accessing and exploring the spiritual domain.
I believe that, when it comes to interpreting and responding to disease, we are surrounded by rich resources. Embedded in a culture of spiritual searching, we do not have to look far to find a vast range of imaginative perspectives on our mortality.
As the tumour invades new areas of my brain, its influence and impact spreading, I can feel my energy slipping away. My capacity for profound, precise thought feels like it is a long-lost memory. The range of things that I can do is shrinking. And, in this state of deepening disability and limitations, I can only engage with literature and art that is clear and comforting, treating the reader or viewer with charity and compassion.
This is an edited extract from Borrowed Stories: Facing Cancer with Culture — from Breaking Bad to The Divine Comedy by Ewan Bowlby, published by Darton, Longman & Todd at £19.99 (Church Times Bookshop £17.99); 978-1-917362-11-5.
Ewan Bowlby died on 23 December 2022, aged 27 (Gazette, 3 March 2023).
