Tag Archives: Illness Narratives

Week 2: Diagnosing Illness Narratives

It’s one thing to be sitting in a classroom discussion as a student– its something entirely different to be leading the discussion as an instructor. I’ve enjoyed teaching scientific facts and promoting inquiry-based learning in science, but it’s a new  experience for me to be leading discussions rooted in my literary interests.

It really makes a difference to have an enthusiastic group of students and a classroom where we can sit in a circle. I taught about the history of illness narratives, which I’m simultaneously writing about for my thesis. It was a strange experience to be crafting  leading questions by voice that I have also been trying to ask in my writing.

I think one of my teaching goals for the semester is to get better at tackling silences. There’s an art to teaching in silence, to allowing quiet to linger for just long enough for thought generation, without letting this surpass into daydreams and uncomfortable, awkward silences. I’m working on it.

It was a thought-provoking first discussion class, and I’m looking forward to keeping the conversations going. Up next: excerpts from Sylvia Plath’s The Bell Jar and her poems Lady Lazarus and Tulips.

Lesson Plan Week 2: Diagnosing Illness Narratives

Presentation: Illness Narratives — A Brief History

Worksheet: Diagnosing Illness Narrative with Frank’s Illness Narrative Types

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Grand Rounds Week 1: Introduction, Syllabus, and Welcome to Blogging

One week ago was the first day of my Honors 135 course, Grand Rounds: Exploring the Literary Symptoms of Illness through Narrative. It was exciting to start and to meet all my students, and I’m really looking forward to an interesting and enlightening semester.

I’ve been struggling to decide exactly how I would like to showcase my course and my thoughts about teaching on this blog. For the time being, I’ve decided to focus on my own instruction materials. I might discuss new ideas that arise in class, but to honor the sanctity of our classroom discussion, I might withhold these thoughts until the end of the semester and reflect on the course as a whole at that time.

And so, here are the openly licensed materials from our first day of class:

Honors 135 Syllabus

Lesson Plan Week 1

How to Create WordPress Blog

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A Google Doodle of Franz Kafka’s The Metamorphosis

In honor of Franz Kafka’s 130th birthday today, Google chose to illustrate one of Kafka’s most canonical works: The Metamorphosis. This classic novella was one of the first illness narratives that I read, telling the symbolic tale of the salesman Gregor whose illness transforms him into a “monstrous verminous bug” (1).

It’s interesting what a different feel this image has. The drab colors reflect the simplistic tone in the book. But the sense of entrapment and isolation conveyed in Kafka’s work is inverted here by a mobile insect in control of his limbs. And the apple, a weapon that injures Gregor, becomes raised on the pedestal-like letter L. There is no sense of the pain and torment that Gregor experiences from the illness in the novella.

This doodle has me thinking about images and their effects on literature. Since I saw this image after reading the book, it was a bit unsettling for me. But if I had seen this image prior, perhaps I would have left the text with a different sentiment. I wonder how book covers of illness narratives may sway perceptions of illness.

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Filed under Miscellaneous Musings, Visualizing Illness

Grand Rounds Conference: Introducing Illness Narrative Research to a Care Team

It was exciting to be in a room full of people who care about the same kids that I do. I was sandwiched between a talk about clinical procedures/research protocols and patient care deliberations; I was a bit frazzled at first, but it was an honor to have the opportunity to present my English thesis research project to the Pediatric Oncology Care Team at Mott Children’s Hospital.

I loved looking out into the conference room and recognizing people who I’ve been learning from and working closely with over the past few weeks. Realizing that they were all here and interested in what I had to say.

As always, I felt as though I could have spoken better, but overall my research project presentation was a huge success. Everyone contributed valuable insight about the project, and I’ve captured some of the ideas that arose here:

When is it too early to approach patients after a new diagnosis?

There were mixed ideas about this. Some people thought that immediate diagnosis would leave patients and families more sensitive and vulnerable, so maybe we should wait to reach out to them. Others recognized that this is a valuable time within the illness experience. I’m not sure that we reached a consensus about this, but it will be something to keep in mind through recruitment.

What kind of editing will be done with the child’s narratives?

My goal is to keep these narratives as authentic as possible. I ideally do not want any editing of these narratives to occur prior to publishing; I want these narratives to be published with misspellings and all.

Will you be noting that your perspective as the sole researcher is subjective?

This was an interesting idea that I hadn’t thought about it, but it’s incredibly true. My presence during this narration and my in-person encounter with these children, these authors, will certainly bias my own perspectives and insight into these narratives. This is especially true considering that I am the only researcher who will be working with these children. I need to think about the implications of this idea more, but I’m glad it was brought up.

After the talk and discussion, it was incredible to sense the energy everyone had. The environment was charged with enthusiasm; everyone was impressed with how far this project has come and the potential it holds. I’m so glad that I will be able to work closely with these caring staff, and I hope that this research will transform the experience of these patients.

I was touched that a few people came up to me afterwards to suggest the following:

A book by a Medical Anthropologist about this taboo sphere. I hadn’t heard about it before, and I look forward to reading it!

A compelling video created by a pediatric oncology patient at Mott. Mary has documented her experience with cancer through photography, and she has composed a powerful song to accompany it.

I still have a lot to think about over the next few weeks (while I’m in Kenya!), but I can’t wait for my research to begin.

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative

Beating Breast Cancer: Angelina Jolie’s Mastectomy

Angelina Jolie’s story of a mastectomy has been permeating through media. With a high genetic risk for breast cancer (>85%), Jolie made the conscious decision that she would not let herself fall victim to cancer. She chose to have a double mastectomy, ridding her body of potentially cancerous cells and replacing them with breast implantations.

Her Op-Ed piece in the New York Times is an interesting and well-written piece, and her decision to undertake a preventive mastectomy all the more admirable. But there was one thing that I wish she had explored more: why the need for the breast implantations following the mastectomy?

I ask this because in reading her piece, I was reminded of Audre Lorde’s The Cancer Journals (as I always am when I hear about breast cancer now). Lorde vehemently critiques the prosthetic breast, suggesting that it is a materialization of societal expectations for women rather than a functional physiological necessity.

Although I realize that Lorde’s strong sense of identity set apart her somewhat controversial critique of the prosthetic breast, it has made me question them more. I imagine that Jolie’s identity as an actress demands for her prosthetic breasts, but I wish she had spoken more about this second, equally important decision in her story. This decision becomes buried beneath the mastectomy, almost as though it was not a decision at all but rather an expected follow-up course of action.

In reading her story, I also think it’s interesting to consider the effects of illness on celebrities. As I opened the article, I was taken aback to realize that I actually recognized the name of the author. I wonder how an illness narrative is altered by a person’s identity as a celebrity and how this impacts its resonance with readers.

It seems like it was Jolie’s awareness of this difference that encouraged her to write this piece, to share her battle, to tell her story.

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Reflecting and Reframing: Becoming a .com site

The past month has been a flurry of wrapping up the semester and delving into the medical school application process, but I’ve also felt as though I was suspended within a strange state of liminality. I’ve been trying to define my research in the immediate future, but I’ve also been looking beyond that to try to figure out what I hope to accomplish with my passion for illness narratives and how far I can take it through my career in medicine.

I’ve come to realize that ultimately, my primary goal is to become a practicing clinical physician: currently, I hope to be a pediatric oncologist, but I recognize and accept the fact that all that may change in medical school. At the same time, the deeper I delve into the intersection of literature and medicine, the more aware I become of the illness narratives that surround our culture, the more I realize that this semester-long independent study barely scraped the surface. Although I sampled the genres of illness narrative theory, short story, novel, autobiography, memoir, poetry, art, dance, film, and more, there is just so much more for me to explore.

My interest in illness narratives is three-fold: learn, research, teach.

  1. LEARN: Studying illness narratives has helped me to better understand the experience of illness, and I believe that this exploration is vital to making me a better physician.
  2. RESEARCH: Making sense of existing illness narratives and conducting research to promote the generation of new ones has helped me to understand literature, to understand medicine, and to understand their intertwinement.
  3. TEACH: Exposure to illness narratives has entirely changed my understanding of medicine, and I believe that this awareness and perspective is crucial for prospective doctors, so I hope to share my knowledge about this field with others and to promote the general education of illness narratives.

Through all this, it’s become clear to me that no matter where I go for medical school, I am entirely keen on continuing to study illness narratives. And I’ve realized that I can share the process of learning, researching, and teaching in this field with others through the wonderful world-wide web. And so, my blog has abandoned the ‘.word press.’ in favor of simply ‘.com.’

My blog has always been for me, a somewhat personal space where I can reflect naturally, and I hope to preserve my original intent with an added twist. I never wanted to publicize my blog because I was writing only for me, but as I’ve watched people from around the world stumble across it, I’ve realized that there might be other illness narrative enthusiasts who just haven’t quite found the field yet. By turning my blog into a website (I still can’t believe the domain name was even available!), I hope that I can create a centralized space based on the familiarity that I’ve gained with the field.

Six months later, my journey is just beginning. And I’m excited to see how this narrative unfolds.

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The Genesis of Illness Narrative Research

For 5 years, I have spent my Friday evenings volunteering with pediatric oncology patients at Mott Children’s Hospital. I admire these children, and their abilities to cope with their situations astound me. I have been fascinated by coping activities such as the Beads of Hope activity, where children make a necklace with beads that each represent a hospital procedure or milestone event in the course of their treatment. These activities give children an outlet to talk about their illness and to tell their story. By spending time with these patients, I have come to greatly value efforts to improve the patient experience and to support these children through their illnesses.

When I came to college with a fascination for medicine and a love for literature, I was uncertain about how to pursue both. I discovered the field of narrative medicine that embodies both these interests: it encourages an exploration of the “and” between literature and medicine. I am fascinated by how literature enables patient expression and provides others with insight into illness. As I explored illness narratives through an independent study, I became interested in studying the illness narratives of children with cancer for my thesis. There seemed to be a void of published narratives written by kids with cancer, and since I am fascinated by the therapeutic nature of the writing process, I crafted my own research project to approach these ideas. My research project is designed to give children the opportunity to explore the mediums of writing, drawing, and speaking to express their experience with cancer.

In the early stages of the project, I talked to individuals from a variety of disciplines in order to shape this interdisciplinary research. Scholars and researchers in the fields of English, Anthropology, Psychology, Child Life, Pediatric Palliative Care, and Pediatrics Hematology/Oncology all provided invaluable input to help me shape this project. I reached out to MPublishing through the UM Medical School to ensure that participating children will be even be provided with the opportunity to publish the narratives that they create in a compiled book.

The current status of this project is that with the help of my pediatric oncologist PI, Dr. Rajen Mody, and my faculty advisor, Melanie Yergeau, the IRB application has been submitted to IRB-MED. This project has received funding through the Honors Program in LSA and the English Department. The months of May and June will be spent developing recruitment materials and preparing for data collection, which will begin in July. The project will be an ongoing two year study and is estimated to include up to 100 patients. Narratives created in the months of May and June will be compiled and published as a narrative collection by as early as the end of 2013, and I hope that we can create multiple collections throughout the course of the study.

As an aspiring pediatric oncologist, I am incredibly excited to have the opportunity to conduct this research. I believe that not only will patients benefit from this therapeutic means of expression, but the created narratives will illuminate the experience of childhood cancer. This research will allow health professionals, parents, and even other children with cancer to better understand the illness. I look forward to interacting with these patients and using a literary lens to better understand their illness experience.

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative

“Exchanging War Stories”

Today at volunteering, two girls were doing Beads of Hope . I have always been intrigued by this activity, where children string beads that represent each monumental moment in the course of their treatment. From blood draws to surgeries, good days to going home days, these beads materialize the ups and downs of coping with cancer.

Although this activity is often done with one patient at a time, today there were two girls who had both endured many similar procedures. One was older, but the other was more outgoing and talkative. It was fascinating to observe how these hope beads served as a catalyst, encouraging these children to reflect on their past procedures and to tell their stories. Each child would try to outdo the other, emphasizing why their experiences were more admirable.

“It’s like they’re exchanging war stories,” noted one parent.

And it struck me just how right he was; that’s exactly what it was like. And I remembered that was how the study of illness narratives originated, since it was derived from the study of narratives of Holocaust survivors.

What is it about illness, especially those like cancer, that is comparable to war? I guess it is the struggle to hold on to life in the face of an enemy’s threat. But participation in war is a decision (I guess drafting suggests that’s not necessarily true), whereas illness like cancer can be an uncontrollable, unpredictable, coincidental occurrence. Battle and war imagery is a common metaphor for illness; what are the shortcomings and implications of such associations?

Beads of Hope is heart-wrenching for me to watch every time. The kids get excited as their necklaces grow longer and longer, and their challenges become more and more unfathomable. I know that these kids do not choose to face their circumstances, but nonetheless, their endurance never ceases to amaze and inspire me.

I am excited that my research will give these children an opportunity to share their war stories with others, to let their voice be heard.

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Life is Black and White and Grey

An incredibly beautiful, tragic, word-less journey. As told through greyscale photography.

The Battle We Didn’t Choose: My Wife’s Fight With Breast Cancer.

~

I don’t even feel obligated to say anything about this. It speaks for itself.

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Appreciating the Honesty of Audre Lorde’s The Cancer Journals

After encountering numerous sneak previews of Audre Lorde’s The Cancer Journals in my preliminary readings about illness narratives, I had high expectations. And Lorde certainly did not disappoint. I was incredibly impressed by the true poetic beauty of her writing, the honesty of her exposure, the infallible strength of her will. Her character was moving: her possession of breast cancer and her strong, dedicated commentary about prosthetic breasts, about being a “Black, lesbian, mother, warrior, woman,” about being herself (92).

Through post-mastectomy journal excerpts, Lorde takes the reader along her journey with cancer. She acknowledges the need for language to escape the comfortable but inadequate confinements of silence, claiming that “what is important to me must be spoken, made verbal and shared, even at the risk of having it bruised or misunderstood” (17).

She explores her arrival at the decision to have the mastectomy and the love and support of women who enabled her to endure the procedure and the pain. Lorde resists the prosthetic breast, instead allowing herself to acknowledge the loss of her right breast, to examine its absence, and to accept. She powerfully critiques the prosthetic breast and plastic surgery breast reconstruction, calling attention to greater social flaws in the perceptions and expectations of women as objects of attraction. Lorde boldly makes claims that invite a pause, a reconsideration of the present rather than a blind acceptance of the way things are.

Lorde has been a source of inspiration to many: Blacks, women, lesbians, aspiring writers/poets, cancer warriors, and more. The powerful prose in The Cancer Journals leaves no question as to why this book resonated with so many and still does today. As the first of its kind, the first to take a step back from conventional depictions of illness through the triumph narrative, this book does not shy away from the truth of Lorde’s pain, even if it is alarming and painful to experience as a reader.

Within the eloquence of Lorde’s writing, two repeated phrases stood out to me. Lorde referred to “america” many times (ex. 77). Not “America.” “america.” Each time I did a double take, left with an unsettled feeling as though something wasn’t quite right. There was something extremely jarring about her conscious choice to resist this conventional norm, to be aware of it and to decide against abiding by it. In deflating the capital A, Lorde powerfully disregards the power attributed to America as a nation such that it becomes just another word on the page. The persistence of her power, in many ways shaped by her encounter with cancer, is repeated throughout her journal and her reflections: “once I face death as a life process, what is there possibly left for me to fear? Who can ever really have power over me again? (63). Through The Cancer Jounals, Lorde finds a way “to be of use” (50).

Discussion Questions:

1.      Excerpts from Lorde’s journal of the past are interspersed with her reflections from the future. What are the effects of this on the narrative? Does it distort the narrative?

2.     Why might Lorde consistently disregard the capitalization of America?

3.     How has the breast cancer movement and experience been revolutionized and transformed by Lorde’s book?

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Filed under Independent Study, Literary Narratives