Claiming and Acclaiming Afflictions: Narrative Medicine and the Articulation of Human Ailments
How does narrative medicine work? In Rita Charon’s germinal work entitled Narrative Medicine: Honoring the Stories of Illness (2006), she asserts how the creative narration of the patient’s stories, supported by the medical knowledge of the doctors, make for an effective and potent tool for sharing and airing the narratives of illness and wellness. Aside from the importance of being able to write down narratives, what is compelling is the significant impact of being able to trace the contours of breakages and gaps within the stories. The value of giving pure attention to what is unsaid — the silences, the pauses, the gestures — no matter how small, are more relevant than ever. In this essay, I attempt to trace the significance of narratives in a creative and critical lens that renders narrative medicine in the Philippine setting. I argue that articulating these experiences of illnesses contribute to that transformation and strengthening of survival and recovery methods. Through various materials of creative nonfiction, I demonstrate the inherent power of narratives in purging the vitality of utterance in the process of recovery. Ultimately, via creative language, we may start confronting these painful realities through the articulation of experiences.
narrative medicine, pathography, Rita Charon
“Saan masakit?” As a child, this was always my mother’s first question to me whenever I complained about ailments. To locate and situate the pain I felt was simple. However, when the cross-examination came to the articulation of the pain, it became more daunting and challenging. I described those pains through what was familiar — a likeness, a semblance of some sort — so that my mother could understand what I felt: “…parang kinukuryente…parang naipit na ugat…parang may nakadagan…pinupukpok ng martilyo…” To describe ailments through the familiar made it easier and more bearable. However, how does one express, with finality, ailments and diseases that are exact and specific, for instance, cancer or AIDS? I am guessing that it takes a whole lot of courage to utter such realities. Just describing the health status of friends, relatives, or mere acquaintances who are suffering or going through such ordeals is already hard: my uncle has cancer, my best friend has HIV, the mother of my boss has Alzheimer’s disease. There is a certain discomfort when confronting these realities. But what if we, ourselves, are the ones who need to face these truths? The way these statements roll out from one’s tongue requires bravery. Narratives, through language, make these ordeals real. Hence, it is also through such narratives that we are able to claim and acclaim not only stories of pain and loss, but also stories of recovery and healing. In a way, there is a need to articulate these truths and realities because it fosters a renewed sense of confronting illnesses and ailments.
Rita Charon (2006) explores a process of unpacking these narratives of ailments coming from the perspectives of medical practitioners, medical patients, and people from the peripheries. Charon posits that narrative medicine is defined simply as clinical practice fortified by the knowledge of what to do with stories and to honor these narratives. But narratives are complex and multifaceted. Medical narratives are intricate chronicles of suffering, pain, loss, and death. But these narratives may also present stories of wellness, survival, and recovery. These narratives operate through the careful and precise maneuvering of language by the narrator. Moreover, narrator-authors also need to consider the dynamics of voices that they present in the narratives. There is a certain protocol of sensitivity and sensibility when highlighting perspectives. For Charon, she believes that “…it was my task to cohere these stories so that they, at least provisionally, made some sense; to take these multiple, contradictory narratives, and let them build something that we could act on.” Technical knowledge of ailments, augmented by craftsmanship in language, produce medical narratives that confront and inspire people who confront these ordeals on a daily basis. Charon argues that these kinds of knowledge systems are capable of deploying beneficial consequences that are sympathetic to the plight of wellness: “…the knowledge they had, very specialized narratological knowledge, could do something good in the world.”
How does narrative medicine work? Charon asserts how the creative narration of the patient’s stories, supported by the medical knowledge of the doctors, make for an effective and potent tool for sharing and airing the narratives of illness and wellness. Aside from the importance of being able to write down narratives, what is compelling, at least for me, is the significant impact of being able to trace the contours of breaks and gaps within the stories. The value of giving pure attention to what is unsaid — the silences, the pauses, the gestures — no matter how small, are more relevant than ever. Furthermore, the ability to listen closely and pay detailed attention to the stories is also important. We should be able to absorb these stories down to their tiniest details. These are manifestations of honoring the stories and narratives of illnesses and survival. There should be that thirst to share eloquently their stories. When language fails the narrator, we should be keen enough to understand the gaps rendered to us in silences, and grasp the utterances made through gestures and motions.
Reading Howie Severino’s ordeal made the current pandemic real in a sense that not much is known about the virus and people are too afraid to come out with their stories. Part and parcel of going through the experience of COVID-19 (C19) is to be ostracized from the rest of the community. There have been countless incidents when, instead of empathizing and showing compassion with victims, they are left discriminated against. Connected with these are incidents when our very own medical experts, tagged as frontline heroes, are the same ones who receive discrimination. Severino’s practice and expertise in journalism, plus his courage to share his experiences, brought forth a compelling work that illustrates his vulnerability and strength. And are not these tropes important in our understanding of how stories of illnesses should be shared? As a patient, I feel that the voice of courage and compassion need to be heard. If ever there comes a point where I need to share my stories and struggles of being ill, this is one aspect that I have to remind myself of: the courage to amplify the voices of those, who like me, endured such ordeals but chose to confront these difficulties with tenacity and bravery.
The thing about pain is that it demands to be felt. The lack of pain renders its absence. Looking at it this way, the degree of agony and sickness becomes an individualized experience of solitary pain. Even if, for example, we all know the common symptoms of your typical seasonal influenza that include sore throat, muscle pains, headache, burning sensation under the eyes, to name a few, the ordeal still becomes personal because of this aspect — pain tolerance. Up to which degree is the pain that we are experiencing still bearable? This concept of being able to endure pain signaled our family ordeal 15 years ago, when we almost lost my younger brother to dengue. It started out as a typical fever and the occasional vomiting, nothing serious according to my mother. Until one night, my brother woke my mother up and told her: “Ma, hindi ko na kaya. Dalhin mo na ako sa ospital.” My brother could no longer bear the pain that he experienced by himself. In the middle of the night, he was rushed to the emergency room of the Tarlac Provincial Hospital. After laboratory tests were made and results came back, it was confirmed that he had dengue. As a doctor, Mom told us to relax because dengue was treatable and it was no longer a serious diagnosis. After a day, the case of my brother turned for the worse. He was rushed to Jose Reyes Memorial Medical Center and was immediately admitted to the ICU. As the hours went by, one by one, the internal organs of my brother began to fail. The doctor said that he caught the most fatal strain of dengue. My mother used her medical connections in order to be allowed to accompany my brother inside the ICU. When the nurses were taking their rounds to do medical exams on my brother, my mother took it upon herself to do the tests: “If this will be the last service I’m going to do to my son, let me do it.”
After storming the gates of heaven with our prayers, my brother miraculously survived. He was intubated and spent almost a week at the ICU. We were all thankful when his doctor told us that he can already be transferred to a regular hospital room for further observation and recovery. What is curious about his ordeal is that whenever we ask him what happened during those days, he cannot quite explain or narrate what he felt: “Hindi ko na maalala.” And until now, we respect his decision to not talk about it. Was that a manifestation of trauma? Each one of us will have enough reasons to not talk about things that caused us tremendous pains. But as an outsider, an older brother who watched his family’s ordeal during those times, there was a different kind of pain when one experiences helplessness. In a way, it reflects certain realities that whenever we see people, either relatives or acquaintances, suffering or going through ordeals such as an epileptic seizure, it is always harder on us who are watching and trying to help, than on the one experiencing the seizure. My mother kept saying “Sana ako na lang.” Now that my mother is officially TP4003, the latest case of C19 here in the province of Tarlac, we are confronted with both collective and solitary encounters with pain — the kind of pain that the whole world is still grappling with. And now, it becomes real. The pain is inside the household, looming within the halls and rooms that our family shares with each other. We are stuck in our own areas of quarantine, praying that it will not get any worse. Upon getting the news that my mother was confirmed positive, I immediately told myself: Why not me? Coming from Severino’s article, I would rather have it instead of my mother.
A few days after the results of my mother came out, the rest of the household were tested and swabbed. I will never forget the swabbing procedure because it happened during my birthday and it was one of the most intrusive medical processes I have experienced. The results confirmed that I also contracted the virus. I am officially TP4173. A day after I received my result, my cousin took a screenshot of the official Facebook page of Tarlac that contained daily updates of C19 cases in the province. It stated:
SAN MIGUEL, TARLAC CITY [TP4173] — 33, male, single, teacher. Patient has a history of exposure to a confirmed COVID positive case and developed mild COVID symptoms on October 27. Swabbed on November 6 and positive result came out on November 9. Patient is under quarantine.
In a way, this journalistic entry of the narrative that I faced briefly summarized the experience. However, it lacked the other aspects of confronting such an ordeal. Hence, there is really a need to write these experiences in a way that explores its reality — the emotional bouts, the anxiety attacks, and even the regrets that we patients face from the time we were tested to the period of recovery. As for my family, I am sure that each of us will have a narrative to share after this tribulation. Right now, we are still confronting a faceless malady, because according to experts and epidemiologists, this virus is behaving irrationally and illogically. The same illness, but with various stories. I hope to share ours in time, if my language and an opportunity so permits.
Narrative medicine creates a platform for a patient and everyone in the periphery to share in a point of contact to confront our mortality. To talk about the stories, to write and utter these experiences “help us to form clearings — and we are able to come together in the clearing of storytelling, and within the clearing of this human gift of mortality, that is where the freedoms emit” (Charon, 2011). These endeavors create sturdy affiliations and communities so that patients do not have to face their pains alone. What is the ultimate manifestation when readers are “moved” by a story? Action and connection. These powerful narratives compel people towards a specific movement that makes the experience of illnesses, ailments, and losses more bearable. To share and write the experiences of others do not mean that patients lose their sense of story but are meant for doctors to build on it.
Charon reiterates that “global health is marred by unconscionable and unjust inequities…we often feel empty-handed of prospects for more effective systems of care” (2006, viii). The health and medical sectors are highly influenced by global machinations of capital and a neoliberal impetus to operate as how they do today. In the Philippines, this is manifested by the number of health workers and medical experts who chose to leave the country for better opportunities abroad. In the global field, Filipinos are considered to be the best when it comes to medical and health services. However, in our country, they are least considered in terms of salary levels and compensation packages. A friend of mine who is a licensed medical technologist rants about how these medical technologists are expected to finish a bachelor’s degree for five full years and clear their licensure examinations just to receive the bare minimum salary. They are overworked and underpaid. The current pandemic shows how these medical service workers are well appreciated but there are still no tangible actions to support their plights. This fascist administration continues to present unnecessary spectacles but remain mum on promises they uttered during their campaigns. Instead of using our taxes to strengthen our health systems, they waste it on unnecessary and irrelevant endeavors. Or worse, the budget goes directly to their pockets. Moreover, it is quite ironic that we treat them as the heroes at the pandemic frontline and yet they are discriminated against just because they are the ones who are most exposed to the virus. In a way, this is a different kind of ordeal that needs further unpacking. In as much as they want to be better in their work, and I believe that they can be, where will they situate their motivation when they are not treated well?
The process of narrative medicine is complex because it is not just about chronicling the patient’s or the medical health professional’s stories, but at the core of it all is relationship-building. How can patients reveal to medical health professionals or relatives their most vulnerable narratives? A level of trust is, then, imperative. The catchphrase “hearing the patient’s story” illustrates how the relationship becomes something perfunctory: to hear the story of a patient is different from listening and eventually empathizing with the patient. Charon posits that “our duties toward the sick and toward their bodies are illuminated and fulfilled by developing the capacity for attention and representation” (2006, xi). These momentary encounters with patients, medical health professionals, and relatives or families will always establish a crucial foundation in the relationship aspect. However, there is another facet which must be brought to the fore: willingness. Charon shares her relationship with an 89-year-old African American lady who suffers from “hypertension, breast cancer, spinal stenosis, insomnia, and uncontrollable anxiety” and the importance of willingness and trustworthiness (2006, 65). It is important for the patient to muster enough courage to share the story, and at the same time, the listeners need to prove that they are honest. This sustained type of relationship is vital if we want to unburden the patients from these heavy and traumatic narratives. The patients need to be assured that we listen to them whenever they share their deepest bouts with their realities. This is where empathy and compassion enter the picture: patients, more than technically knowledgeable health care professionals, also need the humanizing concern and kindness of those who are tasked to care for them. This combination proves to have a more beneficial and lasting impact towards recovery and wellness. At the very least, it eases the passing, making losses and deaths more bearable.
Individuals have the capacity to generate narratives for different purposes. Stories are shared in a variety of ways, but one thing is certain: these narratives give meaning to experiences. An efficacious narrative is hypothetically one that is deliberately considered and which shows an understanding of what is entailed to make sense of what is happening. This, for me, is the reason why medical narratives are complicated: how do we make sense of pain? While the explanation of events feels personally credible, sustainable and usable, there will always be this looming question that interrogates why there is a need for such suffering. Another challenge in articulating medical narratives is the fact that individuals may be more or less capable of expressing their narrative. Every individual will have a different way of confronting realities. The fears (and other emotions) that can attend illness may make it especially difficult for the patient — or relative — to summarize their understanding of what is happening and what seems a good thing to do. Here, a narrative is sometimes that which underlies the verbal accounts shared by individuals. It is as if the narrative has fragmented and only some pieces of it have floated to the surface of our attention. People need to realize that while narratives are important in disseminating health messages, it is a challenging endeavor. Stories contain the potency to articulate effective approaches that demonstrate how readers and audiences are easily transported into narratives. Given this method, it becomes easier to empathize with patients. Even health care decisions can be influenced by medical narratives. Such narratives may be used as medical evidence to strengthen professional judgments. This amalgamation of big and small stories offers us outsiders a glimpse of the larger picture.
In Suleika Jaouad’s speech, she asks this compelling question: “How do [we] begin again and find meaning after life is interrupted?” She shares the mythical heroes’ (and heroines’) journey and how the climactic value of the expedition focuses on how these characters were able to beat the odds and live to tell the tale. She compares how her fight and eventual victory over leukemia transformed her life and who she is. But her most gripping argument is how recovery becomes the most challenging task. The mythical journey is something that is always romanticized, focusing on the conditions and experiences of the patient. The myth of the journey shares to us the smallest details that unpacks anxiety, psychological and mental effects, and other traumatic experiences brought by the illness. These are pressing realities that the journey of illness entails, but not a lot of patients want to talk about them. Jaouad shares how it is also important to realize how, in the experience and survival of cancer, there is really no going back to what was before. Even if a cancer patient survives the journey, the trials and the tribulations will forever change the landscape of the patient’s consciousness about life and what is beyond. Narratives of post-survival, then, present new perspectives in order for us to better understand diseases such as cancer.
Uncertainties are terrifying, but it is in these uncertainties where opportunities and possibilities can occur. Illnesses, ailments, diseases, and viruses cannot be packed into one similar, homogenous experience. These incidents differ from one patient to the next. Hence, medical records and medical narratives have to be taken and analyzed through their distinct nature. Much like how epidemiologists see C19 as a virus that morphs into various manifestations and iterations, it also means that our ways to adapt should also acquire a superior method. I believe that articulating these experiences of illnesses contribute to that transformation and strengthening of survival and recovery methods. To narrate these medical moments is a way of claiming, reclaiming, and acclaiming health ordeals and ailments. Via creative language, we may start confronting these painful realities through the articulation of experiences; so that we may always know how to answer the question — saan ang masakit?
Charon, Rita. Narrative Medicine: Honoring the Stories of Illness. Oxford: Oxford University Press,
Charon, Rita. “Honoring the Stories of Illness.” YouTube, uploaded by TEDx Talks, 4
November 2011, https://www.youtube.com/watch?v=24kHX2HtU3o.
Jaouad, Suleika. “What Almost Dying Taught Me About Living.” YouTube, uploaded by TED,
18 July 2019, https://www.youtube.com/watch?v=m5HQamrXlSY.
Severino, Horacio. “I-Witness: Ako si Patient 2828.” YouTube, uploaded by GMA Public Affairs,
18 April 2020, https://www.youtube.com/watch?v=KdqgzZJbiCw.
As a researcher, Juan Miguel Leandro Quizon specializes in comparative Southeast Asian cultural studies. He received his MA in Literary and Cultural Studies from the Ateneo de Manila University. He is currently an Assistant Professorial Lecturer under the Literature Department at De La Salle University — Manila where he is also finishing his PhD in Literature. He was a Research Fellow at the Asia Graduate Student Fellowship under the Asia Research Institute — National University of Singapore in 2015.