J Med Humanit DOI 10.1007/s10912-014-9303-7
Hospice Comics: Representations of Patient and Family Experience of Illness and Death in Graphic Novels MK Czerwiec & Michelle N. Huang
# Springer Science+Business Media New York 2014
Abstract Non-fiction graphic novels about illness and death created by patients and their loved ones have much to teach all readers. However, the bond of empathy made possible in the comic form may have special lessons for healthcare providers who read these texts and are open to the insights they provide. Keywords Caregiving . Graphic medicine . Graphic pathography . Hospice . Comics and medicine . Hospice comics . Narrative medicine . Nursing . Empathy *****
Origin stories MKC The topic of this article first evolved for me, as many do, from observing and wondering. As a hospice nurse and comics artist, I found myself drawing people dying a natural death surrounded by loved ones (Fig. 1). These kinds of images occurred frequently in my work, and I wondered if others like them existed. Second, after an oral history project I conducted about the AIDS crisis, one narrator withdrew his interview consent when he realized that I was planning to illustrate portions of the project in comic form. He wrote that he had a strong negative reaction to the idea of me using comics to depict a period in his life that was so painful. The incident left me wondering: despite the widespread success of graphic novels with serious topics such as Art Spiegelman’s Maus (1991; the Holocaust), David B’s Epileptic (2005; seizure disorder), Brian Fies’s Mom’s Cancer (2006; lung cancer), perhaps portraying traumatic events in comic form may not be as acceptable to the average reader as I believed. This question won’t be explicitly answered in this article, but my hope is that in presenting the results of a search for and examination of comics about families’ experiences of hospice care, critical discussion on the topic may begin. MK Czerwiec M. Czerwiec Feinberg School of Medicine, Northwestern University, Chicago, IL, USA e-mail: [email protected] M. N. Huang (*) Department of English, The Pennsylvania State University, University Park, PA, USA e-mail: [email protected]
J Med Humanit Fig. 1 “Hold My Hand.” Czerwiec, MK. 2004. Scars, Stories, and Other Adventures. Chicago: MK Czerwiec Productions, www.comicnurse.com
MNH The collaborative nature of this article mirrors the complementary nature of our prescribed roles—if MK represents medical professionals and comics artists, I speak from a position situated among familial caregivers and literary scholars. During my mother’s recovery from a major stroke, I often observed the communication between medical professionals and my family break down, despite best efforts on both sides. The role of the caregiver interests me precisely because of its peripheral nature. Neither patient nor doctor, the caregiver often finds herself in the position of a witness and translator. But telling someone else’s story is neither a simple nor straightforward task. Consequently, it is no surprise that the fraught ethics of representing illness and death are often explicitly mentioned in hospice comics, including all four discussed in this article. Each narrator includes reflection on the process of creating the narrative as part of his or her experience with hospice care. MKC & MNH This article represents a step towards bridging our different areas of knowledge and experience. By centering this article on the narratives from the perspective of the caregiver, we argue that focusing on the transmission and interaction between individuals is key to better care. The dialogic form of comics, both image and text, comprises a more spatially-oriented medium than traditional narrative. This relational thinking parallels ethics of care scholarship, providing a challenge to justice-based discourse, which often privileges abstract principles over lived experience. Rather than merely reversing the traditional paradigm of medical information where doctors utilize evidence-based medicine to diagnose patients, comics about caregiving move away from individualistic discourse and allow us to visualize the patient in relation to his or her environment and personal relationships including with the medical establishment. In this article, we contend that the form of comics powerfully recreates the relational embodied experience of caregiving, especially with respect to narratives about terminal illness and end-of-life. In doing so, hospice comics also provide a unique medium through which to examine an under-recognized but increasingly important area of medical care.
Comics as window Illness happens not simply in a body but also in a life. To provide relevant and effective care to individuals and families experiencing illness, the care must be contextualized in the life and community of the patient—information that most likely is not captured in treatment charts. The lived experience of illness must inform the care provided if it is to be relevant and effective. Narratives are integral to asserting and maintaining selfhood and dignity. However, a patient at the end of life is often incapable of narrating his or her own story. In the case of the comics examined, the task of storytelling falls to the familial caregivers.
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Patients and their families can most effectively teach healthcare professionals what the lived experience of illness looks like. Attentive listening to this contextualized experience of illness has been the focus of the field of study known as narrative medicine, defined by Rita Charon (2006) as “medicine practiced with the narrative skills of recognizing, absorbing, interpreting, and being moved by the stories of illness” (4). Narrative medicine is meant not only to affirm the experiences of the patient but also to encourage self-reflection and examination on the part of medical professionals. Building on the work in narrative medicine is the work of graphic medicine, defined by Ian Williams as “the interface between the medium of comics and the discourse of medicine” (graphicmedicine.org). In their article in the British Medical Journal, Michael Green and Kimberly Myers (2010) introduced the term graphic pathographies to refer to “illness narratives in graphic form” (574). These (often) nonfictional graphic accounts of illness are gifts to all readers but hold particular value for medical professionals because of the empathic bond created between creator and reader, illustrated below by Ian Williams (Fig. 2). These texts can serve as a window into the lives of our patients and their families, providing images, stories, and perspectives we are unlikely to elicit from a bedside or clinic visit or from a textual narrative alone. The practice of care is not limited to the physical space of a hospital room, and by learning from what we see and read in these texts, medical professionals can adapt their interventions to provide more relevant and effective care. Furthermore, comics are uniquely suited to representing embodied experience. The practice of medicine is the practice of reading bodies—textbooks like Gray’s Anatomy are filled with diagrams. By using a language that deploys narrative and image dialogically, graphic pathographies are able to capture and juxtapose the multiple layers of a patient’s experience especially those that cannot be adequately captured by narrative alone. For non-healthcare professionals as well, these texts may serve as a preview of what at some point all of us inevitably face. As Susan Sontag (1978) writes in Illness as Metaphor:
Fig. 2 “Creating Empathetic Bonds.” Williams, Ian. 2011. “Autography as Auto-Therapy: Psychic Pain and the Graphic Memoir.” Journal of Medical Humanities 32: 354
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Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to use the other passport, to identify ourselves as citizens of that other place. (3) Sontag defines illness as an already existent dual-citizenship where we constantly resist going to the “kingdom of the sick” with its attendant pain and shame. The inability to perform healthliness as demanded by society relegates one to the “night side of life.” Consequently, the resemblance between the rectangular panels of comics that contain these graphic narratives and the frames of rooms that house illness is no coincidence: death and its attendant effects have historically been shut away, marked as private tragedy. Hospice comics, then, throw the windows open on the unbillable and unfamiliar hours undertaken in the service of caregiving. Furthermore, the texts critique an understanding of medical care that views curing and preventing illness as the only goals of medicine. Hospice comics This article examines four nonfiction memoir graphic pathographies that portray the dying and death of a parent, which we have termed “hospice comics.” Each of the four texts discussed in this article is written and narrated by an author who has performed the work of caregiving for a terminally ill parent. In dealing with an understudied area of healthcare, these unique texts resonate with authenticity, brave intimacy, and painful detail. Close examination of them is a worthy exercise, specifically in lessening the stigma around natural dying and death. Rather than viewing terminal illness as inevitable suffering and death, the texts reveal the experience to be more complex, creating the opportunity for new experiences of intimacy and familial love. These texts seem to demonstrate our hope that the comic form itself—as Scott McCloud (1993) defines it, “juxtaposed pictorial and other images in deliberate sequence, intended to convey information and/or to produce an aesthetic response in the viewer” (9)—can play an important role in even the most serious conversations. ***** Sarah Leavitt’s Tangles, published in Canada in 2010, presents the story of her mother, Midge, a respected teacher who developed the preschool curriculum for the Province of New Brunswick. As Tangles unfolds, Midge cognitively and physically declines due to early-onset Alzheimer’s disease. Sarah’s account of this process pays careful and gentle attention to documenting and reflecting on the details of Midge’s decline and the family’s responses to that decline. Many of these reflections contemplate topics not often discussed publicly but common among families who care for loved ones in decline—an increasing level of comfort in managing the sick person’s stigmatized bodily functions, the loss of the sick person’s bodily privacy, the anger and frustration occasionally directed by the caregiver toward the sick person or a proxy. In one example (Fig. 3), Sarah’s frustration with her mother lands on the family’s cat. Although Midge still identifies and praises the Lucy the cat, she no longer consistently recognizes her daughter. Sarah’s initial displacement of anger and resentment toward Lucy the cat is first shown as vindictive—the accompanying narration self-describes her comments as “small and mean.” But instead of remaining alienated from her mother, Sarah learns to see from Midge’s point of view—in the third panel, Sarah and Midge are facing the same way, suggesting a shared perspective. Midge’s affection for Lucy becomes a site for mother and daughter to bond where
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Fig. 3 “Kitty, The.” Leavitt, Sarah. 2010. Tangles. Calgary: Freehand: 66
Sarah uses her writerly and artistic abilities to create gifts for her mother. Although Sarah is not completely absolved of her jealousy, it becomes an opportunity for humor that preserves the “weird” without diluting the ambivalence of the caregiving experience. Leavitt drew Tangles from real time notebook accounts of visits with her parents over a 6-year period, which lends the work its episodic structure. In the scene below (Fig. 4), Sarah has just arrived and is first seeing her now dying mother. Sarah calls Midge “Mommy,” her mother’s vulnerability reducing her dialogue to a more child-like state. Leavitt juxtaposes Midge’s prone and unresponsive state with Sarah’s active concern to show Sarah’s integral role in humanizing Midge. Sarah continues affirming her mother during her turn in the family’s bedside vigil where, in addition to what she says (Fig. 5), Sarah sits sketching her dying mother. Sarah’s feelings, words, and memories fill Midge’s silence and absence. After Midge’s death, Sarah draws, describes, and shares her family’s intimate moment of saying goodbye (Fig. 6). Here, Leavitt’s work embodies a two-way relationship between mother and daughter. In the scene above, Sarah takes a lock of Midge’s hair with which to remember her. However, the reader is also reminded of Sarah’s earlier comment about how she inherited her curly hair from her mother—in other words, Midge’s hair is already living on in Sarah. Similarly, although the last panel of this scene shows Sarah feeling as though Midge is gone, Sarah’s daily ritual of saying Kaddish for her mother asserts Midge’s constant presence in
Fig. 4 “The End.” Ibid. 119
J Med Humanit Fig. 5 “The End.” Ibid. 120
her life. Like the neurofibrillary tangles that constitute one valence of Tangles’s title, it is impossible to unravel the story of mother and daughter from one another. ***** The interweaving of individual family member’s stories is especially pronounced in Joyce Farmer’s Special Exits, which was released in the U.S. in September 2010. Special Exits took Farmer, a veteran comics artist, 13 years to painstakingly draw and letter. R. Crumb has said that Special Exits is “a very powerful story… the patience to draw all that—you have no idea what that takes!” (Vankin 2010). Farmer suffers from macular degeneration, and in the book’s acknowledgements, she thanks her eye doctors for keeping her able to work. The book details the decline and death of each of her elderly parents. Farmer has said that Laura, the daughter character in Special Exits, is a very thinly veiled version of herself. This use of an alter ego, as comics scholar Jared Gardner (2008) has observed, allows Farmer to act as “both victim of the trauma and detached observer”: that is, to explore and represent experience without answering to the dividing and/or questions of truth and authenticity (12). In the book, Farmer begins by showing her parents as healthy people, before they began to decline. She wants readers to understand her parents as the intact characters they had been most of Fig. 6 “The End.” Ibid. 122
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Fig. 7 “Your Bath.” Farmer, Joyce. 2010. Special Exits. Seattle: Fantagraphics, 132
their lives. Like Tangles, Special Exits illustrates the acute intimacy that often becomes the necessary norm between the patient and the familial caregiver. In this scene (Fig. 7), Laura is attending to her declining stepmother. As Rachel plays with her breasts with an expression akin to childish joy, Laura sponge bathes her without judgment, effectively mediating her stepmother’s experience to create a nurturing holding environment that maintains Rachel’s dignity. But Farmer is careful not to romanticize caregiving. Special Exits unflinchingly catalogues the tedium and stress that devoted caregiving entails. When Laura’s father Lars is dying later in the book, a haggard-looking Laura sits vigil at his bedside. This depiction (Fig. 8) shows how a family member’s schedule can become structured around the patient’s needs. The transition between the two panels shows her drifting off from exhaustion, the passage of time slipping into the gutter.
Fig. 8 “Six A.M.” Ibid. 196
J Med Humanit Fig. 9 “Your Coin.” Ibid. 196
Despite her constant attention, Laura’s father passes away when she leaves to run a quick errand. She visits him immediately upon her return. Farmer generously shares their goodbye with us (Fig. 9), depicting Laura’s fulfilment of Lars’s final wish, a homage to his lifelong passion for coin collecting. ***** Dealing with the process of diagnosis and death form the organizing logic of Seeds. The text, released in March 2011, is the first graphic novel from British illustrator and designer Ross Mackintosh. Mackintosh presents an account of his father’s diagnosis and eventual death from metastatic cancer. The book opens with the doctor delivering the fatal diagnosis to Ross alone, leaving him to decide how to proceed with the information. Ross and the doctor stand face to face—while Ross looks concerned and still, the doctor is smiling and animated. The tonal gap in their affects show how differently information is handled and processed by medical professionals and caregivers. In the final panel of the sequence (Fig. 10), the embodiment of death, a reaper, looms large over Ross and his father, showing the oppressive presence of death. Toward the end of the book, Mackintosh reveals the meaning of the book’s title (Fig. 11). Like Leavitt does with Tangles, Mackintosh takes a word from medical discourse and reinscribes it with other tenors and meanings such as the father–son relationship. Doing so Fig. 10 “Now There Were Four.” Mackintosh, Ross. 2011. Seeds. London: Com.x: 10
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allows for personal experience of the diagnosis and disease to redefine the understanding of the disease. In the pages that follow this explanation (Fig. 12), Mackintosh shares with us his final moments with his father. We see a collapsing of time and space, as Mackintosh slips a panel of his childhood into the sequence. There is an inversion of strong/weak, parent/child, but in both instances, the affective bond is complete. The lack of dialogue in this sequence, punctuated by Ross’s father inability to speak, shows that speech acts have given way to an affective, haptic connection. Although in the absence of his father’s ability to speak, Mackintosh narrates the scene, the reader is still intensely aware of the visual and physical presence of the father’s body. The next morning, Ross returns to find his father has passed away. In this sequence (Fig. 13), he contemplates his reaction to seeing the now lifeless body and his somewhat disjointed internal processing of that moment. Initially, Mackintosh’s reduction of his father’s dead body to “an artefact, like a cut toenail,” captioning a panel showing his grieving brother, seems almost disrespectful. However, Mackintosh’s honesty in relating his grieving process ultimately shows that there is no “right way” to relate to the death of a loved one. ***** The difficult emotional truths of familial caregiving are taken up by Aneurin (Nye) Wright in his book dealing with his father’s struggle with (and eventual death from) emphysema, Things to Do in a Retirement Home Trailer Park When You Are Twenty-
Fig. 11 “Seeds.” Ibid. 54
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Nine and Unemployed (2012). Wright describes the book as “a lesson in several parts put forth in the form of a comic (a unique combination of words & pictures) so as to expedite communication, education, & dramatic catharsis” (4). In 2002, Wright became the primary, live-in, caregiver for his dying father, accomplished architect Neil Wright. Living together in the titular retirement home trailer park put an already fraught relationship in tighter quarters. Wright’s larger-than-life style with its out-sized characters represented as colorful animals enforces a claustrophobic sense of the forced spatial and emotional closeness between Nye and Neil.
Fig. 12 “A Final Look.” Ibid. 55–56
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In the first chapter, “Activity #1: Pill Counting,” Wright documents the repetitive tedium that can often be an integral part of familial caregiving: Pill counting is the bedrock activity in any good retirement community. One imagines it is much like praying the rosary or contemplating the sound of one hand clapping. If one listens very carefully, one can hear the patter of pills and capsules like rain falling on the roofs of the trailer park. (5) By likening the stream of pills in the retirement community to precipitation, Wright naturalizes the ritual of pill counting, showing its ubiquity and constancy. The particular
Fig. 13 “An Artefact.” Ibid. 62
J Med Humanit Fig. 14 “Activity #1: Counting Pills.” Wright, Aneurin. 2012. Things to do in a Retirement Home Trailer Park…When You’re 29 and Unemployed. Brighton: Myriad Editions: 11
Fig. 15 “Activity 24: Reconciliation Part 3.” Ibid. 232
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medication Nye is counting here, morphine, has an expected side effect, constipation. Neil’s constipation results in another representation of the unexpected tasks familial caregiving can require, manual disimpaction (Fig. 14). In a moment that transgresses socially accepted boundaries, Wright captures multiple registers of emotion. The gravity of the situation is highlighted by the foregrounding of Nye’s hand, in contrast with Neil’s much smaller, prostrate form. However, the dialogue in the panel inverts the power dynamic, showing Neil’s humor and self-assurance. Neil reminds Nye that he once changed his son’s diapers and even dispenses advice—“breathe through your mouth.” Together, combining gravity and levity, father and son manage to preserve Neil’s sense of propriety in a potentially mortifying situation. Wright represents himself and his father in this text as animal avatars, and the scene of his father’s death uses this convention in a powerful way. Sharing those images (pages 247–52) in this article might spoil the experience of the text in ways the other examples do not, so as a courtesy to our readers they will not be presented. What can be said is that the moment of Neil’s death, as well as other key moments in this book, is made more powerful by Wright sharing some of the more complicated and emotionally charged relationship issues that emerged and were addressed as part of Nye’s caregiving and Neil’s dying. Part of the emotional charge that makes the text so compelling is Wright’s refusal to romanticize his father. Neil comes across as caustic, sarcastic, and set in his ways, a man deeply Fig. 16 “Activity 24: Reconciliation Part 3.” Ibid. 233
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Fig. 17 “Activity 28: Void.” Ibid. 270–271
displeased over the growing loss of his independence. His stubborn nature often manifests itself in tense moments between him, his son, and other characters. Life review often brings mixed emotions and regret and can revive old and unresolved resentments. Wright handles this material adeptly in moments such as the one shown in Fig. 15, in which Neil finally says words to his ex-wife that apparently have been a long time in realizing and speaking. The undersized speech bubble, “I’m sorry,” matches Neil’s suddenly diminished position, showing the substance behind his ostensibly simple apology. Wright shows the powerful consequence of this moment in the facing page where the speechlessness of the moment is conveyed completely in his mother’s face without any narration or dialogue to interrupt the panel. The monkey on his mother’s back suggests that mental and emotional burdens can often feel physically manifested and sentient, a technique utilized to great effect in David B.’s Epileptic (2005). The eventual transformation of the oppressive monkey into a young kitten near the end of Neil’s life (Fig. 16) shows the latent potential for bonds to be repaired and relationships transformed, even at the end of life. In Things to do in a Retirement Home Trailer Park…When You’re 29 and Unemployed, Wright shows us a strong male coming to terms with attending to the often tedious and difficult details of caregiving, presenting a counter narrative to the notion that caregiving is “women’s work.” Rather, Wright suggests, care is everyone’s work. This tenet is exemplified in an arresting image toward the end of the book where Nye draws a circle comprised of caregivers, medical professionals, friends, and family who surround his father during his hospice care (Fig. 17). In this image, Wright affirms that the necessary support for his father at the end of his life came from all roles and situations. The circle, a shape without beginning or end, suggests that an affective parity exists via a shared connection transmitted through all of its members, as opposed to relationships divided by sides or different interests.
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Comics as mirror In addition to showing readers many of the surprising and intimate details of caregiving and terminal illness, hospice comics also depicts medical professionals as characters integral to the narrative. At times, these professionals can be quite helpful to families, but in other instances, they can be overwhelming and seemingly insensitive. A panel (Fig. 18) from Tangles portrays a larger-than-life nurse leaning towards a frightened Sarah and her partner Donimo. While the nurse is smiling kindly, the panel is nevertheless charged with fear with Sarah and Donimo’s body language showing intense negative feeling and revulsion at what the nurse signifies—impending death—for Midge. Their speechlessness is counterbalanced by the filled-in blackness of their figures, suggesting a density of wordless feeling. Special Exits presents another example (Fig. 19) that shows how medical discourse can convolute and frustrate communication. In this panel, while the doctor smiles cooperatively as he answers Laura’s questions, he continually uses technical medical terminology, failing to translate into colloquial and accommating language. His explanation of “necrotic tissue” includes the even more esoteric “nosocomial excision,” a treatment meant to counter a hospital-acquired illness—in this case, Rachel’s bedsores. Due to the lack of explanation given, Laura is forced to derive from the context clues to what he means. The doctor’s lack of self-awareness about his obtuseness is not malicious but shows the frustrations that can accompany caregiver’s interactions with medical professionals. The communicative failure that Farmer represents is a microcosm of a larger quandary. When a medical professional does misstep in the emotionally charged hospice care environment, the consequences can be long remembered by families. Such occasions, unfortunately, are not uncommon. Rita Charon (2006) writes in Narrative Medicine, …ineffective care is enacted everyday in hospitals everywhere. Health professionals do not understand what patients go through unless they themselves are ill, and so patients feel unbridgeable chasms between themselves and those who are supposed to take care of them. (4)
Fig. 18 “The End.” Leavitt, Sarah. 2010. Tangles. Calgary: Freehand: 120
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Fig. 19 “To The Bone.” Farmer, Joyce. 2010. Special Exits. Seattle: Fantagraphics, 149
The “unbridgeable chasm” Charon describes can also be aptly extended to the relationship between medical professionals and familial caregivers. Seeds provides a startling example of this professional thoughtlessness, as shown in Fig. 20. Ross’s derisively named “lesson in tact” is painfully echoed in Special Exits (Fig. 21). While Laura’s outburst may seem extreme out of the full context of the story, it is reflective of how quickly and indifferently the nursing home has undone all the years of care she devoted to her parents. The work of care, rarely acknowledged with prestige or monetary compensation, is most visible when it is absent. Consequently, the mirror held up to medical professionals in
Fig. 20 “A Lesson in Tact.” Mackintosh, Ross. 2011. Seeds. London: Com.x: 61
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Fig. 21 “Your Mother’s Not Here.” Farmer, Joyce. 2010. Special Exits. Seattle: Fantagraphics, 150
these texts is instructive and can go a long way toward bridging the chasms that Charon discusses. These nonfiction memoir hospice comics allow medical professionals to see from the patient and family perspective what a large and lasting impact—both positive and negative—their interpersonal interactions can have on patients and caregivers. Attending to and learning from these stories may help medical professionals provide better care to patients and their families in moments of great need.
Comics and empathy Rita Charon (2006) writes further in Narrative Medicine about situations like the ones shown above where the medical professional fails to find the empathy necessary to bridge the chasm between him or herself and an anxious patient or grieving family: We are beginning to understand what is missing… [it] is the health professional’s ability to comprehend the plight of the patient… This doctor is not equipped with the imagination, the ability to see from another’s point of view, the knowledge of human fears and hopes, the ear for language and silence necessary to grasp fully the predicament of his patient. (19) Charon argues that it is not medical knowledge that is lacking but “the knowledge of human fears and hopes” that stymie effective healthcare. We see from the examples explored in this article that the portrayal of missteps in hospice care can be as instructive as examples of things done right. But too often the perceived divide between medical professionals and patients can
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exacerbate the intense stress of the situation. Long form hospice comics that carefully identify and portray the nuances and complexities of these caregiving situations can go a long way toward creating empathic bonds that will help medical professionals make the effort to rise above the daily challenges of their work and do their best for patients and families at difficult times. If a medical professional can, via the many benefits of the comic form, develop an empathic bond with a character, and imagine himself or herself in relation to the position of patient or family member, perhaps the insight provided by this mirroring in the text can serve as a newfound coping skill in stressful situations. As Martha Nussbaum (1992) has argued, literature creates a space for us to test and cultivate our moral imaginations, allowing us to develop more nuanced appreciation for our own moral capacities as well as that of others. Comics have a unique power, more so for many readers than text alone, to create an empathic bond between reader and creator. Hospice comics in particular make real the microethics undergirding interactions among patients, caregivers, and medical professionals. By visually bridging the chasm between medical professional and patient—literally putting them in the same panels—comics reveals them to be two sides of the same experience. Paul Gravett (2011) emphasizes the connective power generated by comics in his keynote address to the Comics & Medicine conference in Chicago: There’s all sorts of educational, lofty, worthwhile, professional, training sorts of sides to comics, but the keyword in all of this, the reason I’m drawn to comics, is empathy, being able to understand other people’s lives and experiences and hopefully finding a connection in yourself. Even if it’s something you’ve never experienced, you can open up your mind and heart to what other people are going through. I find comics…do this tremendously effectively—partly, maybe mostly, because they are so personal. (“The History of Graphic Medicine”) Gravett speaks to the expansionary capacity of comics, suggesting that personal experience can serve as its own index of knowledge, one that provides a check on received or prescribed standards. In other words, the narrative competence that comics demands is an exercise in relationality and empathy, which extends past the personal into the broader social contexts and structures at play. It seems very possible that the kind of empathic connection that is created by these hospice comics can motivate a stressed, exhausted, or simply inattentive medical professional to try to humanize a difficult situation where it may have been easier to just give up or burn out. A medical professional making the extra effort can make a world of difference to a grieving family undergoing a very gruelling experience.
Conclusion As stated in the introduction, this article seeks to theorize the efficacy of comics in representing and critiquing the hospice experience. The title alone, “Hospice Comics,” seems to draw together two things not generally associated: dying and a medium traditionally associated with juvenile amusement. But comics, that is, sequential art that conveys a narrative, often incorporating text, is a medium, and like any other expressive medium, contains quite diverse genres. The examples presented in this article evidence the fact that dismissing comics as merely a form of low culture, incapable of addressing a serious topic such as the death of a loved one, is an injustice to the creators and the powerful graphic memoirs that they have created. Instead, the non-traditional nature of comics poses a powerful challenge to notions of individual death and decline. It is our hope that medical professionals will be able to productively use the lessons from hospice comics to create a more expansive definition of the ethics of medical care.
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References Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press. Czerwiec, MK. 2004. Scars, Stories, and Other Adventures. Chicago: MK Czerwiec Productions, www. comicnurse.com. Farmer, Joyce. 2010. Special Exits: A Graphic Memoir. Seattle: Fantagraphics. Gardner, Jared. 2008. “Autography’s Biography, 1972–2007.” Biography 31(1): 1–26. Gravett, Paul. 2011. “The History of Graphic Medicine.” Keynote given at Comics & Medicine: The Sequential Art of Illness, Chicago, Illinois, June 10. Green, Michael and Kimberly Myers. 2010. “Graphic Medicine: Use of Comics in Medical Education and Patient Care.” British Medical Journal 340: 574–577. Leavitt, Sarah. 2010. Tangles: A Story About Alzheimer’s, My Mother, and Me. Calgary: Freehand. Mackintosh, Ross. 2011. Seeds. London: Com.x. McCloud, Scott. 1993. Understanding Comics: The Invisible Art. Northampton, MA: Tundra Publishing. Nussbaum, Martha C. 1992. Love’s Knowledge: Essays on Philosophy and Literature. New York: Oxford University Press. Sontag, Susan. 1978. Illness as Metaphor. New York: Farrar, Straus, Giroux. Vankin, Deborah. 2010. “R. Crumb: Joyce Farmer’s ‘Special Exits’ on par with ‘Maus.’” Los Angeles Times, November 28, Hero Complex. Williams, Ian. 2011. “Autography as Auto-Therapy: Psychic Pain and the Graphic Memoir.” Journal of Medical Humanities 32: 353–366. Wright, Aneurin. 2012. Things to Do in a Retirement Home Trailer Park…When You’re 29 and Unemployed. Brighton: Myriad Editions.
Hospice Comics: Representations of Patient and Family Experience of Illness and Death in Graphic Novels MK Czerwiec & Michelle N. Huang
# Springer Science+Business Media New York 2014
Abstract Non-fiction graphic novels about illness and death created by patients and their loved ones have much to teach all readers. However, the bond of empathy made possible in the comic form may have special lessons for healthcare providers who read these texts and are open to the insights they provide. Keywords Caregiving . Graphic medicine . Graphic pathography . Hospice . Comics and medicine . Hospice comics . Narrative medicine . Nursing . Empathy *****
Origin stories MKC The topic of this article first evolved for me, as many do, from observing and wondering. As a hospice nurse and comics artist, I found myself drawing people dying a natural death surrounded by loved ones (Fig. 1). These kinds of images occurred frequently in my work, and I wondered if others like them existed. Second, after an oral history project I conducted about the AIDS crisis, one narrator withdrew his interview consent when he realized that I was planning to illustrate portions of the project in comic form. He wrote that he had a strong negative reaction to the idea of me using comics to depict a period in his life that was so painful. The incident left me wondering: despite the widespread success of graphic novels with serious topics such as Art Spiegelman’s Maus (1991; the Holocaust), David B’s Epileptic (2005; seizure disorder), Brian Fies’s Mom’s Cancer (2006; lung cancer), perhaps portraying traumatic events in comic form may not be as acceptable to the average reader as I believed. This question won’t be explicitly answered in this article, but my hope is that in presenting the results of a search for and examination of comics about families’ experiences of hospice care, critical discussion on the topic may begin. MK Czerwiec M. Czerwiec Feinberg School of Medicine, Northwestern University, Chicago, IL, USA e-mail: [email protected] M. N. Huang (*) Department of English, The Pennsylvania State University, University Park, PA, USA e-mail: [email protected]
J Med Humanit Fig. 1 “Hold My Hand.” Czerwiec, MK. 2004. Scars, Stories, and Other Adventures. Chicago: MK Czerwiec Productions, www.comicnurse.com
MNH The collaborative nature of this article mirrors the complementary nature of our prescribed roles—if MK represents medical professionals and comics artists, I speak from a position situated among familial caregivers and literary scholars. During my mother’s recovery from a major stroke, I often observed the communication between medical professionals and my family break down, despite best efforts on both sides. The role of the caregiver interests me precisely because of its peripheral nature. Neither patient nor doctor, the caregiver often finds herself in the position of a witness and translator. But telling someone else’s story is neither a simple nor straightforward task. Consequently, it is no surprise that the fraught ethics of representing illness and death are often explicitly mentioned in hospice comics, including all four discussed in this article. Each narrator includes reflection on the process of creating the narrative as part of his or her experience with hospice care. MKC & MNH This article represents a step towards bridging our different areas of knowledge and experience. By centering this article on the narratives from the perspective of the caregiver, we argue that focusing on the transmission and interaction between individuals is key to better care. The dialogic form of comics, both image and text, comprises a more spatially-oriented medium than traditional narrative. This relational thinking parallels ethics of care scholarship, providing a challenge to justice-based discourse, which often privileges abstract principles over lived experience. Rather than merely reversing the traditional paradigm of medical information where doctors utilize evidence-based medicine to diagnose patients, comics about caregiving move away from individualistic discourse and allow us to visualize the patient in relation to his or her environment and personal relationships including with the medical establishment. In this article, we contend that the form of comics powerfully recreates the relational embodied experience of caregiving, especially with respect to narratives about terminal illness and end-of-life. In doing so, hospice comics also provide a unique medium through which to examine an under-recognized but increasingly important area of medical care.
Comics as window Illness happens not simply in a body but also in a life. To provide relevant and effective care to individuals and families experiencing illness, the care must be contextualized in the life and community of the patient—information that most likely is not captured in treatment charts. The lived experience of illness must inform the care provided if it is to be relevant and effective. Narratives are integral to asserting and maintaining selfhood and dignity. However, a patient at the end of life is often incapable of narrating his or her own story. In the case of the comics examined, the task of storytelling falls to the familial caregivers.
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Patients and their families can most effectively teach healthcare professionals what the lived experience of illness looks like. Attentive listening to this contextualized experience of illness has been the focus of the field of study known as narrative medicine, defined by Rita Charon (2006) as “medicine practiced with the narrative skills of recognizing, absorbing, interpreting, and being moved by the stories of illness” (4). Narrative medicine is meant not only to affirm the experiences of the patient but also to encourage self-reflection and examination on the part of medical professionals. Building on the work in narrative medicine is the work of graphic medicine, defined by Ian Williams as “the interface between the medium of comics and the discourse of medicine” (graphicmedicine.org). In their article in the British Medical Journal, Michael Green and Kimberly Myers (2010) introduced the term graphic pathographies to refer to “illness narratives in graphic form” (574). These (often) nonfictional graphic accounts of illness are gifts to all readers but hold particular value for medical professionals because of the empathic bond created between creator and reader, illustrated below by Ian Williams (Fig. 2). These texts can serve as a window into the lives of our patients and their families, providing images, stories, and perspectives we are unlikely to elicit from a bedside or clinic visit or from a textual narrative alone. The practice of care is not limited to the physical space of a hospital room, and by learning from what we see and read in these texts, medical professionals can adapt their interventions to provide more relevant and effective care. Furthermore, comics are uniquely suited to representing embodied experience. The practice of medicine is the practice of reading bodies—textbooks like Gray’s Anatomy are filled with diagrams. By using a language that deploys narrative and image dialogically, graphic pathographies are able to capture and juxtapose the multiple layers of a patient’s experience especially those that cannot be adequately captured by narrative alone. For non-healthcare professionals as well, these texts may serve as a preview of what at some point all of us inevitably face. As Susan Sontag (1978) writes in Illness as Metaphor:
Fig. 2 “Creating Empathetic Bonds.” Williams, Ian. 2011. “Autography as Auto-Therapy: Psychic Pain and the Graphic Memoir.” Journal of Medical Humanities 32: 354
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Illness is the night side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick. Although we prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to use the other passport, to identify ourselves as citizens of that other place. (3) Sontag defines illness as an already existent dual-citizenship where we constantly resist going to the “kingdom of the sick” with its attendant pain and shame. The inability to perform healthliness as demanded by society relegates one to the “night side of life.” Consequently, the resemblance between the rectangular panels of comics that contain these graphic narratives and the frames of rooms that house illness is no coincidence: death and its attendant effects have historically been shut away, marked as private tragedy. Hospice comics, then, throw the windows open on the unbillable and unfamiliar hours undertaken in the service of caregiving. Furthermore, the texts critique an understanding of medical care that views curing and preventing illness as the only goals of medicine. Hospice comics This article examines four nonfiction memoir graphic pathographies that portray the dying and death of a parent, which we have termed “hospice comics.” Each of the four texts discussed in this article is written and narrated by an author who has performed the work of caregiving for a terminally ill parent. In dealing with an understudied area of healthcare, these unique texts resonate with authenticity, brave intimacy, and painful detail. Close examination of them is a worthy exercise, specifically in lessening the stigma around natural dying and death. Rather than viewing terminal illness as inevitable suffering and death, the texts reveal the experience to be more complex, creating the opportunity for new experiences of intimacy and familial love. These texts seem to demonstrate our hope that the comic form itself—as Scott McCloud (1993) defines it, “juxtaposed pictorial and other images in deliberate sequence, intended to convey information and/or to produce an aesthetic response in the viewer” (9)—can play an important role in even the most serious conversations. ***** Sarah Leavitt’s Tangles, published in Canada in 2010, presents the story of her mother, Midge, a respected teacher who developed the preschool curriculum for the Province of New Brunswick. As Tangles unfolds, Midge cognitively and physically declines due to early-onset Alzheimer’s disease. Sarah’s account of this process pays careful and gentle attention to documenting and reflecting on the details of Midge’s decline and the family’s responses to that decline. Many of these reflections contemplate topics not often discussed publicly but common among families who care for loved ones in decline—an increasing level of comfort in managing the sick person’s stigmatized bodily functions, the loss of the sick person’s bodily privacy, the anger and frustration occasionally directed by the caregiver toward the sick person or a proxy. In one example (Fig. 3), Sarah’s frustration with her mother lands on the family’s cat. Although Midge still identifies and praises the Lucy the cat, she no longer consistently recognizes her daughter. Sarah’s initial displacement of anger and resentment toward Lucy the cat is first shown as vindictive—the accompanying narration self-describes her comments as “small and mean.” But instead of remaining alienated from her mother, Sarah learns to see from Midge’s point of view—in the third panel, Sarah and Midge are facing the same way, suggesting a shared perspective. Midge’s affection for Lucy becomes a site for mother and daughter to bond where
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Fig. 3 “Kitty, The.” Leavitt, Sarah. 2010. Tangles. Calgary: Freehand: 66
Sarah uses her writerly and artistic abilities to create gifts for her mother. Although Sarah is not completely absolved of her jealousy, it becomes an opportunity for humor that preserves the “weird” without diluting the ambivalence of the caregiving experience. Leavitt drew Tangles from real time notebook accounts of visits with her parents over a 6-year period, which lends the work its episodic structure. In the scene below (Fig. 4), Sarah has just arrived and is first seeing her now dying mother. Sarah calls Midge “Mommy,” her mother’s vulnerability reducing her dialogue to a more child-like state. Leavitt juxtaposes Midge’s prone and unresponsive state with Sarah’s active concern to show Sarah’s integral role in humanizing Midge. Sarah continues affirming her mother during her turn in the family’s bedside vigil where, in addition to what she says (Fig. 5), Sarah sits sketching her dying mother. Sarah’s feelings, words, and memories fill Midge’s silence and absence. After Midge’s death, Sarah draws, describes, and shares her family’s intimate moment of saying goodbye (Fig. 6). Here, Leavitt’s work embodies a two-way relationship between mother and daughter. In the scene above, Sarah takes a lock of Midge’s hair with which to remember her. However, the reader is also reminded of Sarah’s earlier comment about how she inherited her curly hair from her mother—in other words, Midge’s hair is already living on in Sarah. Similarly, although the last panel of this scene shows Sarah feeling as though Midge is gone, Sarah’s daily ritual of saying Kaddish for her mother asserts Midge’s constant presence in
Fig. 4 “The End.” Ibid. 119
J Med Humanit Fig. 5 “The End.” Ibid. 120
her life. Like the neurofibrillary tangles that constitute one valence of Tangles’s title, it is impossible to unravel the story of mother and daughter from one another. ***** The interweaving of individual family member’s stories is especially pronounced in Joyce Farmer’s Special Exits, which was released in the U.S. in September 2010. Special Exits took Farmer, a veteran comics artist, 13 years to painstakingly draw and letter. R. Crumb has said that Special Exits is “a very powerful story… the patience to draw all that—you have no idea what that takes!” (Vankin 2010). Farmer suffers from macular degeneration, and in the book’s acknowledgements, she thanks her eye doctors for keeping her able to work. The book details the decline and death of each of her elderly parents. Farmer has said that Laura, the daughter character in Special Exits, is a very thinly veiled version of herself. This use of an alter ego, as comics scholar Jared Gardner (2008) has observed, allows Farmer to act as “both victim of the trauma and detached observer”: that is, to explore and represent experience without answering to the dividing and/or questions of truth and authenticity (12). In the book, Farmer begins by showing her parents as healthy people, before they began to decline. She wants readers to understand her parents as the intact characters they had been most of Fig. 6 “The End.” Ibid. 122
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Fig. 7 “Your Bath.” Farmer, Joyce. 2010. Special Exits. Seattle: Fantagraphics, 132
their lives. Like Tangles, Special Exits illustrates the acute intimacy that often becomes the necessary norm between the patient and the familial caregiver. In this scene (Fig. 7), Laura is attending to her declining stepmother. As Rachel plays with her breasts with an expression akin to childish joy, Laura sponge bathes her without judgment, effectively mediating her stepmother’s experience to create a nurturing holding environment that maintains Rachel’s dignity. But Farmer is careful not to romanticize caregiving. Special Exits unflinchingly catalogues the tedium and stress that devoted caregiving entails. When Laura’s father Lars is dying later in the book, a haggard-looking Laura sits vigil at his bedside. This depiction (Fig. 8) shows how a family member’s schedule can become structured around the patient’s needs. The transition between the two panels shows her drifting off from exhaustion, the passage of time slipping into the gutter.
Fig. 8 “Six A.M.” Ibid. 196
J Med Humanit Fig. 9 “Your Coin.” Ibid. 196
Despite her constant attention, Laura’s father passes away when she leaves to run a quick errand. She visits him immediately upon her return. Farmer generously shares their goodbye with us (Fig. 9), depicting Laura’s fulfilment of Lars’s final wish, a homage to his lifelong passion for coin collecting. ***** Dealing with the process of diagnosis and death form the organizing logic of Seeds. The text, released in March 2011, is the first graphic novel from British illustrator and designer Ross Mackintosh. Mackintosh presents an account of his father’s diagnosis and eventual death from metastatic cancer. The book opens with the doctor delivering the fatal diagnosis to Ross alone, leaving him to decide how to proceed with the information. Ross and the doctor stand face to face—while Ross looks concerned and still, the doctor is smiling and animated. The tonal gap in their affects show how differently information is handled and processed by medical professionals and caregivers. In the final panel of the sequence (Fig. 10), the embodiment of death, a reaper, looms large over Ross and his father, showing the oppressive presence of death. Toward the end of the book, Mackintosh reveals the meaning of the book’s title (Fig. 11). Like Leavitt does with Tangles, Mackintosh takes a word from medical discourse and reinscribes it with other tenors and meanings such as the father–son relationship. Doing so Fig. 10 “Now There Were Four.” Mackintosh, Ross. 2011. Seeds. London: Com.x: 10
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allows for personal experience of the diagnosis and disease to redefine the understanding of the disease. In the pages that follow this explanation (Fig. 12), Mackintosh shares with us his final moments with his father. We see a collapsing of time and space, as Mackintosh slips a panel of his childhood into the sequence. There is an inversion of strong/weak, parent/child, but in both instances, the affective bond is complete. The lack of dialogue in this sequence, punctuated by Ross’s father inability to speak, shows that speech acts have given way to an affective, haptic connection. Although in the absence of his father’s ability to speak, Mackintosh narrates the scene, the reader is still intensely aware of the visual and physical presence of the father’s body. The next morning, Ross returns to find his father has passed away. In this sequence (Fig. 13), he contemplates his reaction to seeing the now lifeless body and his somewhat disjointed internal processing of that moment. Initially, Mackintosh’s reduction of his father’s dead body to “an artefact, like a cut toenail,” captioning a panel showing his grieving brother, seems almost disrespectful. However, Mackintosh’s honesty in relating his grieving process ultimately shows that there is no “right way” to relate to the death of a loved one. ***** The difficult emotional truths of familial caregiving are taken up by Aneurin (Nye) Wright in his book dealing with his father’s struggle with (and eventual death from) emphysema, Things to Do in a Retirement Home Trailer Park When You Are Twenty-
Fig. 11 “Seeds.” Ibid. 54
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Nine and Unemployed (2012). Wright describes the book as “a lesson in several parts put forth in the form of a comic (a unique combination of words & pictures) so as to expedite communication, education, & dramatic catharsis” (4). In 2002, Wright became the primary, live-in, caregiver for his dying father, accomplished architect Neil Wright. Living together in the titular retirement home trailer park put an already fraught relationship in tighter quarters. Wright’s larger-than-life style with its out-sized characters represented as colorful animals enforces a claustrophobic sense of the forced spatial and emotional closeness between Nye and Neil.
Fig. 12 “A Final Look.” Ibid. 55–56
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In the first chapter, “Activity #1: Pill Counting,” Wright documents the repetitive tedium that can often be an integral part of familial caregiving: Pill counting is the bedrock activity in any good retirement community. One imagines it is much like praying the rosary or contemplating the sound of one hand clapping. If one listens very carefully, one can hear the patter of pills and capsules like rain falling on the roofs of the trailer park. (5) By likening the stream of pills in the retirement community to precipitation, Wright naturalizes the ritual of pill counting, showing its ubiquity and constancy. The particular
Fig. 13 “An Artefact.” Ibid. 62
J Med Humanit Fig. 14 “Activity #1: Counting Pills.” Wright, Aneurin. 2012. Things to do in a Retirement Home Trailer Park…When You’re 29 and Unemployed. Brighton: Myriad Editions: 11
Fig. 15 “Activity 24: Reconciliation Part 3.” Ibid. 232
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medication Nye is counting here, morphine, has an expected side effect, constipation. Neil’s constipation results in another representation of the unexpected tasks familial caregiving can require, manual disimpaction (Fig. 14). In a moment that transgresses socially accepted boundaries, Wright captures multiple registers of emotion. The gravity of the situation is highlighted by the foregrounding of Nye’s hand, in contrast with Neil’s much smaller, prostrate form. However, the dialogue in the panel inverts the power dynamic, showing Neil’s humor and self-assurance. Neil reminds Nye that he once changed his son’s diapers and even dispenses advice—“breathe through your mouth.” Together, combining gravity and levity, father and son manage to preserve Neil’s sense of propriety in a potentially mortifying situation. Wright represents himself and his father in this text as animal avatars, and the scene of his father’s death uses this convention in a powerful way. Sharing those images (pages 247–52) in this article might spoil the experience of the text in ways the other examples do not, so as a courtesy to our readers they will not be presented. What can be said is that the moment of Neil’s death, as well as other key moments in this book, is made more powerful by Wright sharing some of the more complicated and emotionally charged relationship issues that emerged and were addressed as part of Nye’s caregiving and Neil’s dying. Part of the emotional charge that makes the text so compelling is Wright’s refusal to romanticize his father. Neil comes across as caustic, sarcastic, and set in his ways, a man deeply Fig. 16 “Activity 24: Reconciliation Part 3.” Ibid. 233
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Fig. 17 “Activity 28: Void.” Ibid. 270–271
displeased over the growing loss of his independence. His stubborn nature often manifests itself in tense moments between him, his son, and other characters. Life review often brings mixed emotions and regret and can revive old and unresolved resentments. Wright handles this material adeptly in moments such as the one shown in Fig. 15, in which Neil finally says words to his ex-wife that apparently have been a long time in realizing and speaking. The undersized speech bubble, “I’m sorry,” matches Neil’s suddenly diminished position, showing the substance behind his ostensibly simple apology. Wright shows the powerful consequence of this moment in the facing page where the speechlessness of the moment is conveyed completely in his mother’s face without any narration or dialogue to interrupt the panel. The monkey on his mother’s back suggests that mental and emotional burdens can often feel physically manifested and sentient, a technique utilized to great effect in David B.’s Epileptic (2005). The eventual transformation of the oppressive monkey into a young kitten near the end of Neil’s life (Fig. 16) shows the latent potential for bonds to be repaired and relationships transformed, even at the end of life. In Things to do in a Retirement Home Trailer Park…When You’re 29 and Unemployed, Wright shows us a strong male coming to terms with attending to the often tedious and difficult details of caregiving, presenting a counter narrative to the notion that caregiving is “women’s work.” Rather, Wright suggests, care is everyone’s work. This tenet is exemplified in an arresting image toward the end of the book where Nye draws a circle comprised of caregivers, medical professionals, friends, and family who surround his father during his hospice care (Fig. 17). In this image, Wright affirms that the necessary support for his father at the end of his life came from all roles and situations. The circle, a shape without beginning or end, suggests that an affective parity exists via a shared connection transmitted through all of its members, as opposed to relationships divided by sides or different interests.
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Comics as mirror In addition to showing readers many of the surprising and intimate details of caregiving and terminal illness, hospice comics also depicts medical professionals as characters integral to the narrative. At times, these professionals can be quite helpful to families, but in other instances, they can be overwhelming and seemingly insensitive. A panel (Fig. 18) from Tangles portrays a larger-than-life nurse leaning towards a frightened Sarah and her partner Donimo. While the nurse is smiling kindly, the panel is nevertheless charged with fear with Sarah and Donimo’s body language showing intense negative feeling and revulsion at what the nurse signifies—impending death—for Midge. Their speechlessness is counterbalanced by the filled-in blackness of their figures, suggesting a density of wordless feeling. Special Exits presents another example (Fig. 19) that shows how medical discourse can convolute and frustrate communication. In this panel, while the doctor smiles cooperatively as he answers Laura’s questions, he continually uses technical medical terminology, failing to translate into colloquial and accommating language. His explanation of “necrotic tissue” includes the even more esoteric “nosocomial excision,” a treatment meant to counter a hospital-acquired illness—in this case, Rachel’s bedsores. Due to the lack of explanation given, Laura is forced to derive from the context clues to what he means. The doctor’s lack of self-awareness about his obtuseness is not malicious but shows the frustrations that can accompany caregiver’s interactions with medical professionals. The communicative failure that Farmer represents is a microcosm of a larger quandary. When a medical professional does misstep in the emotionally charged hospice care environment, the consequences can be long remembered by families. Such occasions, unfortunately, are not uncommon. Rita Charon (2006) writes in Narrative Medicine, …ineffective care is enacted everyday in hospitals everywhere. Health professionals do not understand what patients go through unless they themselves are ill, and so patients feel unbridgeable chasms between themselves and those who are supposed to take care of them. (4)
Fig. 18 “The End.” Leavitt, Sarah. 2010. Tangles. Calgary: Freehand: 120
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Fig. 19 “To The Bone.” Farmer, Joyce. 2010. Special Exits. Seattle: Fantagraphics, 149
The “unbridgeable chasm” Charon describes can also be aptly extended to the relationship between medical professionals and familial caregivers. Seeds provides a startling example of this professional thoughtlessness, as shown in Fig. 20. Ross’s derisively named “lesson in tact” is painfully echoed in Special Exits (Fig. 21). While Laura’s outburst may seem extreme out of the full context of the story, it is reflective of how quickly and indifferently the nursing home has undone all the years of care she devoted to her parents. The work of care, rarely acknowledged with prestige or monetary compensation, is most visible when it is absent. Consequently, the mirror held up to medical professionals in
Fig. 20 “A Lesson in Tact.” Mackintosh, Ross. 2011. Seeds. London: Com.x: 61
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Fig. 21 “Your Mother’s Not Here.” Farmer, Joyce. 2010. Special Exits. Seattle: Fantagraphics, 150
these texts is instructive and can go a long way toward bridging the chasms that Charon discusses. These nonfiction memoir hospice comics allow medical professionals to see from the patient and family perspective what a large and lasting impact—both positive and negative—their interpersonal interactions can have on patients and caregivers. Attending to and learning from these stories may help medical professionals provide better care to patients and their families in moments of great need.
Comics and empathy Rita Charon (2006) writes further in Narrative Medicine about situations like the ones shown above where the medical professional fails to find the empathy necessary to bridge the chasm between him or herself and an anxious patient or grieving family: We are beginning to understand what is missing… [it] is the health professional’s ability to comprehend the plight of the patient… This doctor is not equipped with the imagination, the ability to see from another’s point of view, the knowledge of human fears and hopes, the ear for language and silence necessary to grasp fully the predicament of his patient. (19) Charon argues that it is not medical knowledge that is lacking but “the knowledge of human fears and hopes” that stymie effective healthcare. We see from the examples explored in this article that the portrayal of missteps in hospice care can be as instructive as examples of things done right. But too often the perceived divide between medical professionals and patients can
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exacerbate the intense stress of the situation. Long form hospice comics that carefully identify and portray the nuances and complexities of these caregiving situations can go a long way toward creating empathic bonds that will help medical professionals make the effort to rise above the daily challenges of their work and do their best for patients and families at difficult times. If a medical professional can, via the many benefits of the comic form, develop an empathic bond with a character, and imagine himself or herself in relation to the position of patient or family member, perhaps the insight provided by this mirroring in the text can serve as a newfound coping skill in stressful situations. As Martha Nussbaum (1992) has argued, literature creates a space for us to test and cultivate our moral imaginations, allowing us to develop more nuanced appreciation for our own moral capacities as well as that of others. Comics have a unique power, more so for many readers than text alone, to create an empathic bond between reader and creator. Hospice comics in particular make real the microethics undergirding interactions among patients, caregivers, and medical professionals. By visually bridging the chasm between medical professional and patient—literally putting them in the same panels—comics reveals them to be two sides of the same experience. Paul Gravett (2011) emphasizes the connective power generated by comics in his keynote address to the Comics & Medicine conference in Chicago: There’s all sorts of educational, lofty, worthwhile, professional, training sorts of sides to comics, but the keyword in all of this, the reason I’m drawn to comics, is empathy, being able to understand other people’s lives and experiences and hopefully finding a connection in yourself. Even if it’s something you’ve never experienced, you can open up your mind and heart to what other people are going through. I find comics…do this tremendously effectively—partly, maybe mostly, because they are so personal. (“The History of Graphic Medicine”) Gravett speaks to the expansionary capacity of comics, suggesting that personal experience can serve as its own index of knowledge, one that provides a check on received or prescribed standards. In other words, the narrative competence that comics demands is an exercise in relationality and empathy, which extends past the personal into the broader social contexts and structures at play. It seems very possible that the kind of empathic connection that is created by these hospice comics can motivate a stressed, exhausted, or simply inattentive medical professional to try to humanize a difficult situation where it may have been easier to just give up or burn out. A medical professional making the extra effort can make a world of difference to a grieving family undergoing a very gruelling experience.
Conclusion As stated in the introduction, this article seeks to theorize the efficacy of comics in representing and critiquing the hospice experience. The title alone, “Hospice Comics,” seems to draw together two things not generally associated: dying and a medium traditionally associated with juvenile amusement. But comics, that is, sequential art that conveys a narrative, often incorporating text, is a medium, and like any other expressive medium, contains quite diverse genres. The examples presented in this article evidence the fact that dismissing comics as merely a form of low culture, incapable of addressing a serious topic such as the death of a loved one, is an injustice to the creators and the powerful graphic memoirs that they have created. Instead, the non-traditional nature of comics poses a powerful challenge to notions of individual death and decline. It is our hope that medical professionals will be able to productively use the lessons from hospice comics to create a more expansive definition of the ethics of medical care.
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References Charon, Rita. 2006. Narrative Medicine: Honoring the Stories of Illness. New York: Oxford University Press. Czerwiec, MK. 2004. Scars, Stories, and Other Adventures. Chicago: MK Czerwiec Productions, www. comicnurse.com. Farmer, Joyce. 2010. Special Exits: A Graphic Memoir. Seattle: Fantagraphics. Gardner, Jared. 2008. “Autography’s Biography, 1972–2007.” Biography 31(1): 1–26. Gravett, Paul. 2011. “The History of Graphic Medicine.” Keynote given at Comics & Medicine: The Sequential Art of Illness, Chicago, Illinois, June 10. Green, Michael and Kimberly Myers. 2010. “Graphic Medicine: Use of Comics in Medical Education and Patient Care.” British Medical Journal 340: 574–577. Leavitt, Sarah. 2010. Tangles: A Story About Alzheimer’s, My Mother, and Me. Calgary: Freehand. Mackintosh, Ross. 2011. Seeds. London: Com.x. McCloud, Scott. 1993. Understanding Comics: The Invisible Art. Northampton, MA: Tundra Publishing. Nussbaum, Martha C. 1992. Love’s Knowledge: Essays on Philosophy and Literature. New York: Oxford University Press. Sontag, Susan. 1978. Illness as Metaphor. New York: Farrar, Straus, Giroux. Vankin, Deborah. 2010. “R. Crumb: Joyce Farmer’s ‘Special Exits’ on par with ‘Maus.’” Los Angeles Times, November 28, Hero Complex. Williams, Ian. 2011. “Autography as Auto-Therapy: Psychic Pain and the Graphic Memoir.” Journal of Medical Humanities 32: 353–366. Wright, Aneurin. 2012. Things to Do in a Retirement Home Trailer Park…When You’re 29 and Unemployed. Brighton: Myriad Editions.
