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Published online by Cambridge University Press: 25 November 2024
In this article, I argue that iconographic pathography provides a transformational form of storytelling for ill persons and the communities around them. This work addresses the reduction of illness narration to clinical vocabularies. It targets often excluded communities—chronic and terminal narrators—as well as promotes ethical practices of creative and collaborative inclusion for ecclesial communities. I use Devan Stahl’s Imaging and Imagining Illness as an example of this distinctive form of pathography, first differentiating it from other narrative forms of the genre as well as contextualizing its decentralized narrational form with criteria drawn from icons’ emergence within early Christian art. I claim that such decentralized narration changes the trajectory of self-understanding for the ill person as well as the ethical response required for those who bear witness to such narratives.
1 Schioldann, Johan A., “What Is Pathography,” PubMed 178 (2003): Google ScholarPubMed; see Jutel, Annemarie and Russell, Ginny, “Past, Present and Imaginary: Pathography in All Its Forms,” Health 27, no. 5 (2023): Google ScholarPubMed. Definitions vary, yet all prioritize the clinical gaze. Narrow and early historic definitions, like that of Robley Dunglison in 1853, articulate it only as a “description of disease” (cited in Jutel and Russell, “Past, Present and Imaginary,” 888.) Some recent authors, like Osamu Muramoto’s “retrospective diagnosis,” continue using clinical definitions oriented around the patient’s disease. See Muramoto, Osamu, “Retrospective Diagnosis of a Famous Historical Figure: Ontological, Epistemic, and Ethical Considerations,” Philosophy, Ethics, and Humanities in Medicine 9 (2014): CrossRefGoogle ScholarPubMed. Anne Hawkins broadens the definition somewhat. She classifies the genre as a “form of autobiography or biography that describes personal experiences of illness, treatment, and sometimes death”; Hunsaker Hawkins, Anne, Reconstructing Illness: Studies in Pathography (West Lafayette, IN: Purdue University Press, 1993), Google Scholar. Hawkins’s use of “autobiography” in addition to “biography” ostensibly suggests a wider domain that includes patient narration. However, even in Reconstructing Illness, the clinical domain folds patient-given narration into the clinical mode, which reverts to the clinician’s assessing perspective. See also Sacks, Oliver, Awakenings (New York: Random House, 1999).Google Scholar
2 Scarry, Elaine, The Body in Pain: The Making and Unmaking of the World (New York: Oxford University Press, 1985), 6–7.Google Scholar
3 Jutel and Russell, “Past, Present and Imaginary,” 892; as Jutel and Russell note, without a diagnosis and clinical validation, “a person is left in a liminal state, betwixt and between, leaving them sometimes bereft of coherent ways to understand, to fix or to accept their situation…. Pathographies are sometimes driven by the need for an explanation to fill the vacuum.” Yet as Arthur W. Frank and Elaine Scarry point out, the utility of medical frameworks can become hindrances as well as aids to illness experiences and narrations. What may be a relief at one point can become restrictive or dominating as well.
4 See Frank, Arthur W., The Wounded Storyteller: Body, Illness, and Ethics (Chicago,IL: University of Chicago Press, 1995), .CrossRefGoogle Scholar
5 See Stahl, Devan, ed., Imaging and Imagining Illness: Becoming Whole in a Broken Body (Eugene, OR: Cascade, 2018).Google Scholar
6 See Frank, The Wounded Storyteller, 22.
7 Frank distinguishes between premodern (communal storytelling that shaped individual understanding and experiences of illness), modern (medical and technical understanding of illness as disease with diagnosis, treatment, and restorative cure as primary), and postmodern (personal and distinctive uses of narrative to reclaim the subject’s self-understanding and decision-making in the midst of modern medical interpretations); Frank, The Wounded Storyteller, 4–5.
8 See Frank, Arthur, “Reclaiming an Orphan Genre: The First-Person Narrative of Illness,” Literature and Medicine 13, no. 1 (1994): .CrossRefGoogle ScholarPubMed
9 Frank points out that one finds three forms of narrative tension building in such reconstructive efforts: between what is public and private, between medical and nonmedical, and between what belongs to the telling of illness and the telling of life outside the illness. See Frank, The Wounded Storyteller, 3–4. Each narrative split challenges the narrator to make decisions about how to tell her story, embracing and melding division, confronting and rejecting parts of the division, using elements from these divisions as tools for self-creation, or some combination of these modes.
10 Frank, The Wounded Storyteller, 1.
11 Frank, The Wounded Storyteller, 55.
12 Frank, The Wounded Storyteller, 13.
13 See Frank, The Wounded Storyteller, 2.
14 Frank, The Wounded Storyteller, 98.
15 Therese Jones, “‘The Becoming of My Life …’ Liminality, Pathography, and Identity,” in Imaging and Imagining Illness, 54.
16 Frank, The Wounded Storyteller, 165.
17 Devan Stahl, “Living into My Image,” in Imaging and Imagining Illness, 3.
18 This process begins with turning to sixteenth-century woodcuts, which Devan Stahl describes as anatomy set “in a theological backdrop.” What were depictions of flesh and bone are given “rich meaning and context” that set them apart from Stahl’s “sterile illustrations I was accustomed to seeing in the images of my own body produced by medical imaging technology.” Stahl, “Living into My Image,” 12.
19 At the end of his volume, Frank argues for witness narratives as a form of storytelling that gives the narrator a particular form of power to interpret their illness experience, from its embodied beginning to its present moment. Witness narration begins with the testimony of the ill person as a narrator. See Frank, The Wounded Storyteller, 139. Moreover, the shape of witness makes storytelling inherently dynamically dyadic. Where chaos narratives separate the narrator from others, even when others are present to listen, witness narratives require not only that a listener be present, but also that they respond to the story given. There is a responsibility given to the listening party—they cannot be passive observers. Rather, a testimonial witness “implicates others in what they witness” (emphasis in original). Frank, The Wounded Storyteller,143.
20 Darian Goldin Stahl, “Lived Scans,” in Imaging and Imagining Illness, 22.
21 Stahl, “Lived Scans,” 22.
22 Darian Stahl describes her work as the use of print-based artwork, such as stills or inkjet on film, as well as extended published books of her art, as means to combine Devan’s “MRI scans with domestic spaces”; Stahl, “Lived Scans,” in Imaging and Imagining Illness, 24.
23 See Stahl, “Living into My Image,” 23. Justice in this sense goes beyond rights, duties, or ends specifically related to the images of Devan’s body and their use by medical professionals. Darian’s work suggests a deeper and holistic approach to justice, taking into account the way medical diagnoses can do violence to one’s sense of self, one’s relation to one’s body, and one’s relation to others in their community.
24 Frank, The Wounded Storyteller, 182.
25 See Williams, Rowan, Lost Icons: Reflections of Cultural Bereavement (Edinburgh: T&T Clark, 2000), Google Scholar. Or, as C. A. Tsakiridou claims, the confluence of art, literature, and theology worked like a grammar in Byzantine art. “Rather than exclude creative and original expression, they set the parameters within which it could resonate with collective experience”; Tsakiridou, C. A., Icons in Time, Persons in Eternity: Orthodox Theology and the Aesthetics of the Christian Image (Burlington, VT: Ashgate Publishing, 2013), Google Scholar.
26 For more on the way the historie of icons emerge, see Ekserdjian, David, The Italian Renaissance Altarpiece: Between Icon and Narrative (New Haven, CT: Yale University Press, 2021).Google Scholar
27 The Christian apologists of the church in the first two centuries roundly condemned artistic representations of God that might risk idolatrous practices, forsaking anything that might resemble the artistic pagan practices of their neighbors. Full-scale theoretical condemnation, however, did not mean that Christians completely forsook religious art. On the contrary, as scholars such as Moshe Barasch, Lee M. Jefferson, and Patricia Cox Miller point out, from the third to the eighth century religious art began to proliferate and express “new motifs and … new, specifically Christian, ideas.” Barasch, Moshe, Icon: Studies in the History of an Idea (New York: New York University Press, 1992), Google Scholar. The iconoclast debate of the eighth and ninth centuries emerged out of a thick combination of theoretical apologetics and the practical dimensions of religious art. This contentious history, however, significantly impacted the way icons as images related to communities and the subject matter they presented. See Cox Miller, Patricia, The Corporeal Imagination: Signifying the Holy in Late Ancient Christianity (Philadelphia: University of Pennsylvania Press, 2009), CrossRefGoogle Scholar; Jefferson, Lee M., “Miracles and Art,” in The Routledge Handbook of Early Christian Art, ed. Jensen, Robin M. and Ellison, Mark D. (New York: Routledge, 2018), .Google Scholar
28 The Gospel of John played a twofold role of amplifying God’s great, and often miraculously healing, power, as well as differentiating that power from the “magical” power of other local gods. Other symbolic choices, such as Jesus carrying a staff when raising Lazarus or the oversized scale used to depict his countenance, helped link divine power to Moses and the history of God dwelling with the world and guiding it to a land of blessing. See Jefferson, “Miracles and Art,” 310–14, 316–19.
29 For example, later political defenses of icons, such the Three Apologies against Those Who Attack the Divine Images from John of Damascus, greatly contributed to their narrative meaning within communities. See Barasch, Icon, 187–88.
30 Nicholas Denysenko points out that icons related to specific miraculous occurrences or “wonderworking” such as gushing myrrh or healing oils, not only were part of a specific community’s spiritual and liturgical pattern of life, but such icons would even “go on the road,” expanding the meaning of “wonderworking” through their greater reach and range. See Denysenko, Nicholas, “Introduction,” in Icons and the Liturgy, East and West: History, Theology, and Culture, ed. Denysenko, Nicholas (Notre Dame, IN: University of Notre Dame Press, 2017), 2–5Google Scholar. For the consolidation of ritual to indoor practices, see Taft, Robert F., “Icon and Image East and West,” in Icons and the Liturgy, East and West: History, Theology, and Culture, ed. Denysenko, Nicholas (Notre Dame, IN: University of Notre Dame Press, 2017), Google Scholar. As Leonid Ouspensky and Anton C. Vrame note, certain characteristics remained stable and made saintly figures recognizable, such as St. Basil’s balding head with a tuft of hair and long black beard. However, such stability simultaneously granted flexibility to a variety of portrayals of St. Basil in iconic depiction. See Ouspensky, Leonid, “The Meaning and Dialogue of Icons,” in The Meaning of Icons, ed. Ouspensky, Leonid and Lossky, Vladimir (Crestwood, NY: St. Vladimir’s Seminary Press, 1982), Google Scholar; Vrame, Anton C., The Educating Icon (Brookline, MA: Holy Cross Orthodox Press, 1999), 68–69.Google Scholar
31 Here “ethical response” fits within a responsibility ethics framework, in contrast with teleological and deontological frameworks. As H. Richard Niebuhr argues, responsibility frameworks are especially important in response to suffering “because suffering is the exhibition of the presence in our existence of that which is not under our control … it cannot be brought adequately within the spheres of teleological or deontological ethics.” H. Richard Niebuhr, The Responsible Self (Louisville, KY: Westminster John Knox Press, 1999), 60. For more on these frameworks, see pages 47–68.
32 This collaborative creative experience sets iconographic pathography apart from the witness narration of Frank’s wounded storyteller. In Frank, witness narration also involves an ethics of receptivity and response. It opens a “pedagogy of suffering” that implicates those who listen to ill narratives. See Frank, The Wounded Storyteller, 143. The narrative, however, remains within the domain of the wounded narrator, and the ethics of response prioritizes protecting the narrator and the fragmentary and particular nature of illness stories. Witness narration exhibits an ethics of care for the wounds of ill narrators, without imposing restoration, but it does not suggest an ethics of collaborative narrativity or an ethics of care through narrative creativity.
33 Jeffrey P. Bishop, “Icons of the Body, Darker Gifts of the Flesh,” in Imaging and Imagining Illness, 106.
34 Certini, Rossella, “Illness, Narration and Healing: Women’s Perspectives,” Studi Sulla Formazione 22 (2019): Google Scholar, emphasis in original.
35 Certini, “Illness, Narration and Healing,” 153.
36 Williams, Lost Icons, 2. Initially, artistic destabilization and promotion of “intellectual uncertainty” was a vital part of safeguarding the divinity and holiness portrayed from idolatrous attachment. See Miller, The Corporeal Imagination, 144–45. See also Vrame, The Educating Icon, 87.
37 For more on the distinction between “mimetic, detailed representation” and icons, see Dudek, Andrzej, “On Some Aspects of Word, Image and Human Values as Reflected By Russian Orthodox Icons and Western Religious Paintings,” Politeja 5, no. 44 (2016): .Google Scholar
38 Robert Maniura, “Icon/Image,” Material Religion 7, no. 1 (2011): 51.
39 See Maniura, “Icon/Image,” 52.
40 Miller, The Corporeal Imagination, 143. Elena Kravchenko and Vrame point out that such practices may seem strange to those unaccustomed to viewing icons in a larger context. See Kravchenko, Elena, “Black Orthodox ‘Visual Piety’: People, Saints, and Icons in Pursuit of Reconciliation,” Journal of Africana Religions 8, no. 1 (2020): CrossRefGoogle Scholar. See also Vrame, The Educating Icon, 86–89.
41 Maniura, “Icon/Image,” 50–51.
42 Peter Brown points out that prior to the fourth century, artistic representations of divinity (distinct from the cult of relics) were precisely material representations of what is immaterial—divinity. See Brown, Peter, The Cult of Saints: Its Rise and Function in Latin Christianity (Chicago, IL: University of Chicago Press, 1981), Google Scholar. As Miller notes, however, the landscape between divine immateriality and the materiality of the world, and in particular the world of the saints and their artistic representations, became increasingly porous and ambiguous as time went on. Following the fourth century, Christian imaging of the body underwent a momentous shift via iconography, “involving alterations both in notions of what was possible for an embodied self and also in possibilities for divine intervention in the world. Now a human being (or that person’s body part or picture) could play an active role in the physical or spiritual salvation of a fellow human being.” Miller, The Corporeal Imagination, 118.
43 Robert Taft notes that what was highly symbolic (albeit not abstract, allegorical, or metaphorical) in early icons becomes even more concrete and narrative-driven by the Middle and Late Byzantine periods. In consequence, figures such as Patriarch Photibus described the Virgin’s lips in a mosaic in St. Sophia as “made flesh by the colors,” and Emperor Leo VI comments that a mosaic icon of Christ “appeared to be not a work of art, but Christ himself.” Taft, “Icon and Image East and West,” 16.
44 Tsakiridou, Icons in Time, Persons in Eternity, 213. As Miller notes, saints take on an “uncanny (im)material presence in the painting … a physical presence that seems to be materially substantive without ever quite achieving corporeal solidity”; Miller, The Corporeal Imagination, 144.
45 Bissera V. Pentcheva draws from Basil of Caesarea for further solidification of the conceptualization of eikon as performance. He notes that Basil’s writings were suppressed in the Iconoclasm controversies between 730 and 843 CE. See Pentcheva, Bissera V., “Vital Inbreathing: Iconicity beyond Representation in Late Antiquity,” in Icons and the Liturgy, East and West: History, Theology, and Culture, ed. Denysenko, Nicholas (Notre Dame, IN: University of Notre Dame Press, 2017), Google Scholar. For a historical overview of the iconoclastic controversy, see Vrame, The Educating Icon, 22–29.
46 Bishop, “Icons of the Body, Darker Gifts of the Flesh,” 105.
47 Williams, Rowan, The Dwelling of the Light: Praying with the Icons of Christ (Norwich: The Canterbury Press, n.d.), .Google Scholar
48 Bishop, “Icons of the Body, Darker Gifts of the Flesh,” 106. Bishop’s claim aligns with the idea that the aim of iconic catechesis is not only to “nurture, instruct, and direct” the faithful, but “the goal of iconic catechesis is for each person to become an icon, a living image of God, a person who lives in continual fellowship—communion—with God, reflecting … ‘iconic knowing and living.’” Vrame, The Educating Icon, 63.
49 Taft, “Icon and Image East and West,” 17.
50 Certini, “Illness, Narration and Healing,” 154.
51 Vrame, The Educating Icon, 93. Vrame goes further to argue that the icon’s process of theosis offers a particular “iconic knowing and living” that “inform[s], form[s], and transform[s] … so that each person can manifest the divine presence in his or her life.”
52 Miller argues that hagiography is not a discrete limited genre revolving around the literary lives of saints. Rather, it functions “as a set of discursive strategies for presenting sainthood” that emphasizes the “liveness of saints in an ‘in-between’ material medium” that transects the material and the spiritual. Miller, The Corporeal Imagination, 118–19.
53 Miller, The Corporeal Imagination, 119.
54 Miller, The Corporeal Imagination, 125.
55 Quoted in Miller, The Corporeal Imagination, 120. See Brown, Bill, “Reification, Reanimation, and the American Uncanny,” Critical Inquiry 32, no. 2 (2006): .CrossRefGoogle Scholar
56 Brown, “Reification, Reanimation, and the American Uncanny,” 199.
57 See Miller, The Corporeal Imagination, 120. The icon is shown to be more than an image through the “dialectic of immanence and transcendence” that “match[es] the delicate balance of human and divine in the saints themselves”; Miller, The Corporeal Imagination, 121. Such narratives “destabilize conventional identity” of the saints they portray by making the encounter with petitioners, like St. Theodore, part of their identity and part of the meaning and “historie” that accompanies their icon. Miller, The Corporeal Imagination, 125.
58 Miller, The Corporeal Imagination, 128; emphasis in original.
59 Miller, The Corporeal Imagination, 147.
60 Devan Stahl, “Reflections,” in Imaging and Imagining Illness, 118.
61 For more on illness narration as therapeutic, see Karen Nelson et al., “Exploring the Impacts of an Art and Narrative Therapy Program on Participants’ Grief and Bereavement Experiences,” Journal of Death and Dying, 2022, https://doi.org/3022282211117–302228221111726.
62 Miller, The Corporeal Imagination, 131.
63 Stahl, “Reflections,” 117.
64 Several of Symeon’s stories portray a dynamic tension between the saint and “spiritual images” of himself that channeled divine healing power. In one instance, Symeon appears to a blind man in an apparition, while in another he appears as a “‘spiritual image’ … speaking with a human voice.’” In a third apparition, he performs surgery. See Miller, The Corporeal Imagination, 113.
65 Miller, The Corporeal Imagination, 128.
66 Miller draws attention to other significant ambiguities in this story. The dust Symeon advises be turned into an icon might refer to an allusion to Genesis and the dust of the earth, yet it is also that which has been in closest contact with Symeon, and likely contains skin and other small parts of the saint’s body. Moreover, the image the saint gives is two-dimensional, seeming to dispel any idolatrous concerns, yet it also effects healing power and presence, partaking “of that ontological instability, an oscillation between subject and object, human and thing” in the bifocal representation (visibility of the divine through a human image). Miller, The Corporeal Imagination, 129.
67 Pentcheva, “Vital Inbreathing,” 64.
68 See Pentcheva, “Vital Inbreathing,” 65.
69 This expansion both draws close to and expands the idea of icons, much as Beat Brenk argues happened in Egyptian monasteries where images normally found in church apses entered the monk’s cell. Here, the monk’s “private encounters” with images “imitates a Church,” joining the isolation of the monk to a greater community. See Brenk, Beat, The Apse, the Image and the Icon: An Historical Perspective of the Apse as a Space for Images (Wiesbaden: Dr. Ludwig Reichert Verlag, 2010), CrossRefGoogle Scholar. Likewise, the narrative icons open and integrate the private domain of illness experiences to other members of the church at large, while simultaneously offering these experiences as sacramental and transformative for that same larger body.
70 Communities could consider creative ways to recognize and help any members who are unable to narrate their own stories due to physical or mental differences, ways that acknowledge the space held open for the ill person’s narration (even if it is never given) and that value the collaborative gifts that shared narration offers.
71 Dairan Stahl and Stella Bolaki model a version of this kind of work with their “Book as Body” workshops, which “use the artist’s book format as a bodily proxy, that is, to employ it to sensorially materialize a symptom or experience outside the body so that it may become a shareable and tacit form of communication.” Books become sculptural mediums to help ill persons share their experiences of illness stories, and in particular to help medical professionals. Bolaki, Stella, “Interactions between Medicine and the Arts,” ed. Schütz, Wolfgang and Pilz, Katrin, Wiener Klinische Wochenschrift: The Central European Journal of Medicine 132, no. S1 ( 2020): Google Scholar, https://doi.org/10.1007/s00508-020-01706-w.
72 Kravchenko, “Black Orthodox ‘Visual Piety,’” 93.
73 See Kravchenko, “Black Orthodox ‘Visual Piety,’” 93.
74 Rushforth, Alex et al., “Long Covid - The Illness Narratives,” Social Science and Medicine 286 (2021): 1, .CrossRefGoogle ScholarPubMed