Cancer Rites and the Remission Society

Paul Stoller

In Review | Film 50/50, Summit Entertainment, Mandate Pictures, and Point Grey Pictures, 100 minutes.

Illustration for Paul Stoller's "Cancer Rites and the Remission Society": Edel Rodriguez Human beings are creatures of routine. As our lives move along, most of us make relatively seamless transitions from school to work, from single to family life, all the while engaging in reasonably comforting practices (though these may shift as our lives change). During this life of customary comfort, we sometimes chance upon peak moments, episodes of intense happiness or pleasure that we savor before slipping back into the quiet satisfactions of everyday life. Immersed in our routines, we take a lot for granted. Most of us have food to eat, a place to sleep, and friends and family to enjoy. We also usually take for granted our good health. For most of us, illness is a nuisance for which we take medicine for a few days or weeks. On occasion, illness forces us to visit the doctor for more medicine, but our usual expectation is that these incidents are transitory way stations on the road back to a normal, steady state of health.

Imagine if this assumption of normal health is suddenly obliterated by a diagnosis of cancer. That's the scenario in the film 50/50, a compelling story of what happens when someone you know suddenly becomes a cancer patient with a fifty-fifty chance of survival. In the film, Adam Lerner (Joseph Gordon-Levitt), a young twenty-something radio journalist without a care in the world, begins to suffer from fatigue and back pain. He has had some blood tests and a CT scan, but doesn't think he's seriously ill. When he meets with his doctor to discuss the results of these tests, the physician, a middle-aged white man dressed in a lab coat, describes the test results clinically—in merciless doctor talk filled with indecipherable, polysyllabic terms. The doctor points to illuminated CT scan images as if their message is clear. Adam, who doesn't know what is happening, asks for clarification. With great reluctance, the doctor finally admits that Adam has cancer.

"What are my chances?" Adam asks.

Citing the severity and rarity of the cancer, the doctor mumbles, "Fifty-fifty." He clears his throat. "We have people you can talk to about this."

Adam, who is young, wonders how he could have cancer. He experiences the all-too-common initial reaction of denial, but eventually, he begins to confront his diagnosis and meets with a counselor, a clinically inexperienced young woman working on her dissertation. Numbed by the unexpected change in his life, he finds the initial session a waste of time. Who, after all, could understand what he is going through? His life has been completely upended and he's facing his own mortality at an unspeakably young age.

When Adam tells his friends and family about the cancer, no one knows what to say or do. His girlfriend, Rachael, a struggling artist, puts up a brave front, but she cannot deal with the existential uncertainties of cancer and leaves Adam for someone else. His friend Kyle is also challenged. He encourages Adam to lose himself in new sexual encounters, but, during chemotherapy, this approach doesn't quite work out. Adam's mother, who has been overly protective of him, continues her smothering overreaction, which prevents any meaningful mother-son dialogue. Adam's father suffers from Alzheimer's disease and can hardly recognize his son, let alone understand his fragile physical condition. Adam's co-workers don't know how to relate to him, either: Does he really have cancer? Is he really going to die?

Like all cancer patients, Adam has to face his disease alone. In the film, no one can truly understand what he's going through, except perhaps for two men—fellow patients—who sit next to him during chemo-therapy treatment sessions. They have an immediate and deep understanding of Adam's situation. With few words, these three men give one another comfort and move through the treatment process with measures of mutual support.

When one of his chemotherapy buddies suddenly dies, Adam is forced to confront anew his odds of survival. In the end, Adam survives risky surgery and realizes how much his mother, father, and Kyle love him. He also develops a romantic bond with his inexperienced counselor. Slowly, Adam's life moves into a profoundly reconfigured world that promises to be full of existential rewards.

One of my favorite scenes in the film 50/50 is a brilliantly rendered depiction of a cancer rite. It is Adam's first chemotherapy session. He is understandably nervous about having poison dripped into his body and wonders if the drugs will nauseate him. He also worries that he will be hairless, develop mouth sores, lose his capacity to taste food, become a target for infections, or experience debilitating fatigue and joint pain—all common side effects of chemotherapy. A nurse leads him to the treatment room, a relatively empty space with reclining chairs. He sees an empty chair next to two men connected to tubes through which chemotherapy drugs are dripping into their bodies.

"What stage are you?" the older of the two men asks.

Adam doesn't understand the question. He tells the man that he has a rare cancer with a fifty-fifty chance of survival.

The other patient says that those are pretty good odds.

Adam smiles, but remains terrified. The older gentleman offers him a plate of brownies that his wife has made. Smiling, the man says that they are laced with medical marijuana.

"We always partake during chemo," the other patient says.

Adam admits that he hasn't used marijuana. The older man encourages him to try it. The other patient smiles his encouragement.

And so Adam consumes several brownies and gets high. The chemotherapy session glides by and Adam leaves his first session on top of the world.

This scene underscores the importance of rituals in our encounters with serious illness. In no way does the scene trivialize the moral seriousness of confronting a life-threatening illness like cancer. Rather, it implies that if you have to face your mortality, as does Adam in the film, then it might be best to do so in the company of people who know what you know. Why not eat some marijuana-laced brownies and soar to the stratosphere of a good high?

In treatment settings, such ritual lightness is not uncommon.

Having journeyed along cancer's path for more than ten years, I can say that 50/50 hits the right notes about emotionless doctor talk and the impersonal institutionalization of health care. It also shows how the cancer experience can sometimes be funny, sometimes sad; sometimes filled with gut-wrenching disappointment and sometimes filled with heartwarming surprise. The message of 50/50 is important for any person. Sudden change and personal struggle, the fifty-fifty odds in the game of life, compel you to appreciate what matters: the bonds we create with family and friends, and the importance of leaving behind traces of our being for future generations.

The experience of a serious illness has much to teach us about quality of life. It underscores life's fragility, but also the resilience people can exhibit: most cancer patients confront the pain and suffering of their illness with remarkable dignity and resolve. Here, I hope to describe what the experience of cancer can teach us about the nature of ritual processes, the texture of communal spirituality, and the depth of human resilience.

 

Anthropologists and religious studies scholars have long grappled with the whys and wherefores of ritual, that centerpiece of religious practice. Many scholars have approached ritual as a gateway that leads to refinements of social theory—a way to shed light on concepts that deepen our knowledge of the human condition. Using ethnographic data compiled by Walter Baldwin Spencer and Francis James Gillen in their classic ethnography, The Native Tribes of Central Australia (1899), Émile Durkheim famously suggested that ritual, which he considered a central component of religion, marked the origin of social consciousness. In his monumental Elementary Forms of Religious Life (1912), Durkheim argued that religions, by way of ritual, take us beyond our routine encounters and thoughts and propel us toward an awareness of a greater social whole. Durkheim's work is a classic case of using the analysis of ritual to explore broader social themes.

The study of ritual has also illuminated important anthropological themes. In the anthropology of religion, many scholars have focused on ritual symbolism, the study of which attempts to uncover the key cultural themes of a group's worldview. The most notable body of anthropological work on ritual symbolism is that of the late Victor Turner, who demonstrated how ritual practices and ritual symbols communicate themes that shape group identity—for example, his famous analysis of the milk tree as a representation of matrilineal kinship among the Ndembu people of Zambia. Turner also introduced typologies of ritual and wrote about how symbols and symbolic action create structure and anti-structure in ritual events. One of Turner's most important ideas about ritual is the notion of liminality, which he borrowed, in part, from Arnold van Gennep's classic 1909 Rites of Passage.

When someone goes through a rite of passage, which usually marks a key point in the life cycle—birth, initiation, marriage, and death—that person begins the journey with one socially recognized identity (child, unmarried adult, or apprentice). After participating in a ritual process of some sort, the person reemerges with a new socially recognized identity (adult, husband or wife, or master). Turner paid special attention to what he called the liminal phase of rites of passage. "Liminal entities," he wrote, "are neither here nor there; they are betwixt and between the positions assigned and arrayed by custom, convention, and ceremonial."[1]

For Turner, the liminal is more than a way station between beginning and end; it is a space in which people tend to be humble. It is also a space in which people do what they are told to do—usually without complaint. According to Turner, people in liminal spaces often accept routines of pain. Moreover, people go through this experience together with others, which means that liminality creates a profound, if fleeting, camaraderie, a feeling that erases past distinctions among age, social class, and ethnicity. Turner called this kind of situational camaraderie "communitas."

Like many anthropologists, I accepted Turner's rather structured notion of the ritual process. Rites of passage, after all, work like a good narrative; every rite has a beginning, a liminal middle, and an end, marked by a reintegration into society. Indeed, much of my ethnographic experience among the Songhay people of the Republic of Niger has conformed to Turner's set of ritual categories. As part of my apprenticeship to Songhay healers, I submitted to rites of passage that marked my transition—albeit, a partial one—from an American anthropologist to a Songhay apprentice. In one such rite, my first initiator, Mounmouni Kada, prepared for me a batch of kusu, or magic paste, a mixture of millet and various pulverized tree barks and plant leaves. When the kusu was ready, he recited three incantations over the pot and spat lightly into the mixture, transforming it into a substance that would connect my being to the spirit world. True to form, this rite of passage seemed to alter my social identity among my Songhay friends. After the ritual, many of them began to call me sork'izo, or child of the Sorko.[2]

For me, the experience of cancer has unfolded much like a rite of passage. As is portrayed in the film 50/50, cancer forces you, like any neophyte, into a liminal state. The side effects of cancer treatments result in noticeable physical changes—a pale pallor, a slow unsteady gait, hair loss, and a frail body—that set the patient apart from "normal" people. The physical manifestations of cancer and its treatment regimes are markers of impeding death, which, given the intense fear we have of death in Euro-American societies, makes most of us uncomfortable. What do you say to someone who has cancer?

In my case, the visibility of my liminal status made a few colleagues, friends, and family members uncomfortable, which meant that they tried to avoid me. They canceled social commitments. They crossed the street if they saw me shuffling along the sidewalk. They turned around if they noticed me lumbering up a stairwell. For me, cancer resulted in an unanticipated degree of social isolation.

Consistent with Turner's criteria for liminality, cancer patients accept both isolation and a regimen of pain. Courses of chemotherapy, immunotherapy, or radiation are given in infusion rooms, which are isolated spaces usually arranged to promote casual conversation and some degree of camaraderie—Turner's notion of communitas. If communitas does not develop in the treatment room, those who "survive" treatment are encouraged to participate in support groups, where strangers linked through the common experience of illness are given license to articulate their most profound fears about pain, suffering, and death. In my experience, support groups provide extended liminal spaces that make it a bit easier to confront the difficulties of treatment and the uncertainties of remission.

My own ethnographic experience as a cancer patient who willingly engaged in cancer rites suggests an elaboration on Turner's take on liminality. In Turner's view, liminality is finite. When the rite of passage is complete, you are reintegrated into society and the liminal phase comes to an end. For cancer patients, myself included, there is no end to liminality. You exist in what I like to call "continuous liminality." At the end of your regimen of treatment, you are not reintegrated into a normal social routine. Instead, you are in remission, which is neither here nor there. In remission, you are continuously betwixt and between. To borrow from Maurice Merleau-Ponty, you are in a space that is "everywhere and nowhere." Once cancer has touched your being, there is no going back to a life in "the village of the healthy," in which health is taken for granted.[3] Instead, individuals with conditions that can be managed, but not cured, become members of "the remission society."

Arthur Frank wrote that members of the remission society are people who

were effectively well, but could never be considered cured. ... Members of the remission society include those who have had almost any cancer, those living in cardiac recovery programs, diabetics, those whose allergies and environmental sensitivities require dietary and other self-monitoring, those with prostheses and mechanical body regulators, the chronically ill, the disabled, those "recovering" from abuses and addictions, and for all these people, the families that share the worries and daily triumph of staying well.[4]

Indeed, remission affects a large population of people. These are people who are directly or indirectly in a state of continuous liminality. Continuous liminality, of course, is not limited to people who are sick. Immigrants are in continuous liminality. They continuously inhabit spaces somewhere between a home and a host country. Among the Songhay people of Niger, sorcerers also live in a space of continuous liminality. They are always already between the social and spirit worlds, bridging the gap between life and death.

My teacher Adamu Jenitongo was "of" and "not of" this world. As his apprentice, I'd sleep in the spirit hut of his compound. Late at night, I'd sometimes wake from sleep to find him conversing with his ancestors. He would ask them for guidance and listen to their advice. Before he died in 1988, he told me that Songhay sorcerers—sohanci in the Songhay language—defy death. He said that if I wore the rings he had given me, we would forever be connected—between wakefulness and sleep, between the social and spirit worlds, between life and death. He said that his defiance of death would bring comfort to those he had touched during his life. "You will never be alone," he told me during our last meeting. "Never."[5]

Most cancer patients may be psychologically isolated, but they are not completely alone. They have the support of family, friends, or, perhaps, a congregation of believers. And yet, in American society, our approach to serious illness mercilessly centers on the individual. The patient is urged to engage a serious illness like a warrior and beat "it" into submission. If you are able to win the battle (if not the war) on cancer, you become a "survivor."

Survivorship has become a fundamental component of Euro-American cancer rites. The Lance Armstrong Foundation, one of the largest and most influential cancer organizations, is dedicated to survivorship, and its slogan, "Live Strong," evokes a warrior ethos. Even after "successful" cancer treatment, the "battle" continues during remission. You have to be constantly vigilant and strong—an effort to win the "war."

Many of the cancer patients I've talked to do not like the "cancer as war" metaphor. They think such militaristic metaphors place the heavy weight of individual expectation and performance on their shoulders. Soon after the end of my own regimen of chemotherapy and immunotherapy, a number of well-meaning friends slapped me on the back and proclaimed, "Looks like you beat it. You're a survivor."

I didn't feel like a survivor and would never use such a term to describe the state of my being. Following the wisdom of my Songhay friends, I consider illness an ongoing presence in the body; it is not something that can be beaten or destroyed. Most Songhay people develop a "healthy" respect for the force of illness. As I wrote in my book, Stranger in the Village of the Sick:

If a Songhay develops a serious illness like cancer, he or she is likely to build respect for it. Respect for cancer—or any illness—does not mean that you meekly submit to the ravages of disease. Following the ideas of sages like Adamu Jenitongo, illness is accepted as an ongoing part of life. When illness appears, it presents one with limitations, but if it is possible to accept the limitations and work within their parameters, one can, like Adamu Jenitongo, create a degree of comfort in uncomfortable circumstances. (191)

Our discourses of medicine and health, however, are infused with the metaphors of war. There is war on cancer. Patients fight diseases, which, through aggressive treatment, they hope to annihilate. When a life ends, we say that the person fought a brave battle against the disease. In immunological discourse, the self is considered a defense system against alien invaders—bacteria and viruses—that need to be destroyed if the self is to regain its healthy equilibrium.[6]

But there is another way to approach serious illness. You can confront illness through the processes of incorporation, which, following David Napier's groundbreaking work in The Age of Immunology, include the embryological notion of inclusive "we-ness." The incorporation of "nonself," Napier argues, makes us resilient and robust. The embryo is the classic example of this set of processes. It is a nonself entity whose growth in the womb ensures the viability of our species. Through processes of incorporation, rather than those of annihilation, the species is sustained and becomes more resilient.

And yet, in the discourse of immunology and health, the soft expansive inclusiveness of embryology, which is so vital to human well-being, is overwhelmed by the hard, restrictive exclusiveness of "disease as war" metaphors. The same can be said about discourses articulated in cancer rites. Although cancer rites create liminal spaces in which participants experience the fleeting connectedness of communitas, those experiences are also overtaken by the powerful metaphors of survivorship in which warrior patients battle their enemy diseases to the very end.

For me, however, communitas is the most powerful force that emerges from a cancer rite. In her provocative new book, Communitas: The Anthropology of Collective Joy,[7] the inimitable Edith Turner writes eloquently about a human phenomenon that seems to defy denotation:

The characteristics of communitas show it to be almost beyond strict definition, with almost endless variations. Communitas often appears unexpectedly. It has to do with the sense felt by a group of people when their life together takes on full meaning. It could be called a collective satori or unio mystica, but the phenomenon is far more common than the mystical states. (1)

She goes on to discuss the group dynamics of communitas, which occur

... through the readiness of the people ... to rid themselves of their concern for status and dependence on structures, and see their fellows as they are. Why it comes is unanswerable, except through the mercies of the energy of nature and through spirits. One can answer with a functionalist explanation, but the randomness of the events renders this ineffective. Besides, experiencers of communitas will say: "There is more to it than that." (1–2)

Edith Turner also discusses the social and psychological impact of communitas:

In communitas there is a loss of ego. One's pride in oneself becomes irrelevant. In the group, all are in unity, seamless unity, so that even joshing is cause for delight and there is a lot of laughter. The benefits of communitas are quick understanding, easy mutual help, and long-term ties with others. (3)

Put in a slightly different way, communitas reaffirms the social foundation of the human condition. It reintroduces us to a spiritual dimension of life that lies beyond the domains of organized religion. That's why moments of communitas are so special for anyone, including those of us who have participated in cancer rites. Whenever I have casual encounters with cancer patients, I feel a sense of communitas. We have an immediate, implicit, and unarticulated sense of what Martin Buber called the I–Thou relationship, the often-silent dialogue of profound mutual connection and comprehension.[8]

 

When i went to the theater to see 50/50, I sensed a profound discomfort in the room. People squirmed in their seats and didn't know if it was OK to laugh at cancer patients getting high during chemotherapy.

"I don't think it's funny," a person sitting behind me muttered. "Cancer is not a laughing matter."

Perhaps it was the juxtaposition of situational levity and ongoing stress that contributed to that person's discomfort. I found the scene hilarious and laughed quite loudly—one of only a few people to do so in the theater. I liked the film because it was a sometimes painful, sometimes funny portrayal of the cancer experience from the cancer patient's perspective. In my view, the film showcased the positive social power of communitas among cancer patients. At the same time, the film confirmed how foundational metaphors (cancer as war, immunology as a search-and-destroy mission, survivorship as the warrior's way) tend to block paths to profound social connection, which can, in time, lead to a deep awareness of our spirituality.

My experience along the path of cancer as, a patient and an ethnographer, has also reaffirmed for me the power of ethnography not only to describe the complexities of social life, but to probe deeply into the recesses of human resilience and spirituality. My participation in cancer rites has compelled me to refine my anthropological thinking—about ritual, liminality, and communitas—and to refocus my narrative expression, all in the attempt to create works that provoke a spirit of communitas between writer and reader, between filmmaker and audience. In this way, we can create bonds with others so that they might think a new thought or feel a new feeling. In this way, we can create works that remain open to the world.


Notes

  1. Victor Turner, The Ritual Process: Structure and Anti-Structure (Cornell University Press, 1969), 95.
  2. Paul Stoller and Cheryl Olkes, In Sorcery's Shadow: A Memoir of Apprenticeship among the Songhay of Niger (University of Chicago Press, 1987).
  3. See my Stranger in the Village of the Sick: A Memoir of Cancer, Sorcery, and Healing (Beacon Press, 2004).
  4. Arthur W. Frank, The Wounded Storyteller: Body, Illness, and Ethics (University of Chicago Press, 1995), 8.
  5. See also Jean Rouch, La religion et la magie Songhay (Presses Universitaires de France, 1960).
  6. See A. David Napier, The Age of Immunology: Conceiving a Future in an Alienating World (University of Chicago Press, 2003).
  7. Edith Turner, Communitas: The Anthropology of Collective Joy (Palgrave Macmillan, 2012).
  8. See Martin Buber, I and Thou (1923; Scribner, 2000).

Paul Stoller, Professor of Anthropology at West Chester University in Pennsylvania, has written ethnographies, biographies, memoirs, and two novels. His research is in the areas of the anthropology of religion, visual anthropology, the anthropology of senses, and economic anthropology.

Illustration by Edel Rodriguez