Category Archives: Independent Study

These blog posts represents summaries of the readings and assignments that were completed for my independent study, American Culture 389: Illness Narratives: Literature and Medicine with Professor Alexandra M. Stern.

Narrating Illness through Dance

This week, I’m on the look out for non-narrative illness narratives. Expressions of the illness experience that occupy any form of media.

I’m beginning my exploration of multimedia illness narratives with dance. As someone who has danced forever, I have always been fascinated by movement. Recently I have learned about dance therapy and movement programs, and I love how dance and movement have been adapted to help with coping.

I began with a youtube search for ‘illness dances’.

This first video is called Schizophrenia, and is “loosely based” on the illness.

These movements embody the marriage of chaos and calm, of sharp and fluid, of control and collapse.

Another video I found is called “An Interpretation of My Illness- Crohn’s disease.” Unlike the previous one, this dance is choreographed by an individual who has the illness that the dance expresses.

Her incorporation of movements on the floor demonstrate the “falling” aspects of her illness, the numerous head rolls reveal her anguish. An interesting aspect of this dance is the song chosen: “Her Diamonds” by Rob Thomas, a song written for his wife who has an auto-immune diseases.

Last but not least, how can I forget my own dance loosely choreographed about autism? After seeing this video, I was inspired to choreograph a dance last year to “Fix You” by Coldplay.

It’s interesting to look back on my own choreography through the lens of illness narratives. I didn’t even realize that I was depicting the light of triumph narratives. At the time, I described the circle as a moment of “chaos,”; now it seems like those movements express the “chaos narrative” that words cannot capture.

Haven’t had enough dance illness narratives? Here’s an epic production of “Childhood Illness…Our Story”, Part 1 and Part 2, telling the tale of “a mother and young daughter’s journey through chemotherapy.”

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Accepting the Limits of Language

While Arthur Frank’s The Wounded Storyteller explored the potency of illness narratives, Kathlyn Conway’s Illness and the Limits of Expression exposes the shortcomings inherent in many of these works. Conway outlines the paradoxical nature of illness narratives: “Literature offers the possibility of representing the shattering experience of illness, but it proves woefully inadequate for depicting the nature of physical pain and the dissolution of the self” (16).

Language as a form of expression, as a means of communicating physical or mental stress, falls short of its demands. Conway denounces the most popular form of illness narratives: the triumph narrative. This form of expression finds fault in its glorification of the illness experience. Often, these are written at the conclusion of an illness experience and reflect on past experiences rather than chronicling illness through its progression. This narrative form aligns with the cultural American belief that “anything is possible,” which makes it of great appeal to the general public (6). These stories are of overcoming illness and disability, of rising above the challenges that they present, and ultimately emerging from this learning experience with enduring strength.

Despite the temptation of reconstructing past illness as triumph narratives, Conway advocates for the importance of non-triumph narratives. She claims that a triumph narrative “enables individuals and the culture to ignore the needs of the ill and disabled,” when instead, illness narratives should illuminate the vulnerabilities of these conditions and the resulting implications (24). Illness narratives present an opportunity to strip illness down to its roots, to boldly expose it for what it is. These narratives track the evolution of the illness in conjunction with the evolution of the self.

Conway exposes the paradoxical nature of illness natures. Literature empowers those who experience illness, but it simultaneously belittles that very experience. While language allows individuals to dissociate the self from the body and to express physical pain through mental thought, narratives also enable the reclamation of the body through an intimate and honest engagement with illness.

Discussion Questions:

1. In what ways are illness narratives paradoxical? What does this paradox reflect about illness? (55)

2. Why does Conway choose to address illness and disability together? How does this affect her argument and her definition of these terms? (14)

3. What is the right way to react or interpret illness narratives? Or rather, is there a right way? (19)

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Revelations of an Impaired Listener

Frank presents a number of fascinating ideas that have exceeded my expectations by showing how interesting illness narratives are. He outlines how the evolution of illness from premodern to modern to postmodern times. Illness was initially alienated from the disease, which Kleinman defines as the pathological component, because medical terminology existed in isolation as a sort of foreign language. Modern times involved an acknowledgement of illness as a component that was equally as important as disease, while postmodern times have taken this a step further to empower illness with a voice that now echoes through illness narratives.

A fundamental idea that Frank presents is as follows: “The mystery of illness stories is their expression of the body: in the silences between words, the tissues speak.” This situates illness narratives in an in-between state; they transform physical experiences of the body into emotional experiences of the mind, and then translate them into language. Because I’m fascinated about ideas regarding the mind and the body, I wonder how illness narratives fit into this divide and how these aspects of an individual influence this form of communication. According to Frank, illness narratives include four problems with the body: “control, body-relatedness, other-relatedness, and desire” (29). He also categorizes depictions of the body into four different types: “the disciplined body, the mirroring body, the dominating body, and the communicative body” (29).

Perhaps what I found to be most compelling was the idea that there really is no such thing as a singular illness narrative for an individual. Each individual shares multiple illness narratives, largely shaped by the audience and the purpose of its telling. This traps individuals within a multilingual “narrative wreck,” so to speak, a heterglossic discourse. As a result, there are multiple ontologies to illness, and each narrative shapes illness into a different entity. Despite the multiplicity of illness narratives and illnesses themselves, I find it slightly paradoxical that these all originate within a single body.

Realizing that narratives are told in variations has changed the way that I listen. It’s fascinating to see how conversations unfold based on those involved. As I was volunteering at Mott’s Children’s Hospital, I couldn’t help but hear dialogues differently. Conversations with different individuals illuminated different aspects of an illness, depending on the listener: a doctor, a nurse, a child life specialist, a family member, a friend. Just as illness narratives can empower individuals with a voice, exploring them can also provide listeners with the power to hear.

Discussion Questions:

1. Metaphor is common in illness stories. When is it appropriate to find symbolism in illness, and where does the boundary lie? (57)

2. How do illness narratives exist temporally? What transformations do they initiate, especially with regards to individual identity and the multiple ontologies of an illness in the past, present, and future? (60)

3. How does narrative truth function in narrative illnesses, and what is its importance? Frank claims that “in illness stories, truth may be selective, but it remains self-conscious” (62). What does he mean by this, and how can this be seen in present illness narratives?

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