Tag Archives: Illness Narratives

Chronicling Childhood Cancer: Ethical Considerations in Self-publishing the Work of Others

To publish a book: a dream held by many, achieved by few.

Until now. Self-publishing has revolutionized the world of books, forever altering what it means to be a published author. But what happens when an author is actually an editor responsible for a collection of works, none of which are her own?

This September, Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer was published. Edited by me, Trisha Paul, this collection of works consists of narratives collected from my research with pediatric oncology patients at C.S. Mott Children’s Hospital.

There are a lot of questions that I grappled with throughout the publication process, and they left me filled with both excitement and anxiety. What does it mean to self-publish a book that is entirely based on the contributions of others? Perhaps nothing, perhaps something. For me, it was important from the start that the focus remain on the children and teens with cancer.

Yet as the editor of this collection and the collector of these stories, I inevitably had the responsibility of making decisions regarding this publication. How much did I want to disclose about myself as the editor? If I was not including any images of the child and teen authors, was I comfortable including my own picture? How could I adequately summarize where this idea came from in the Preface without dwelling too much on my personal story?

Throughout the process, I kept wondering whether I was overthinking these seemingly minor details, but I always found myself agreeing with my initial concerns. These questions may seem superfluous or irrelevant, but they are the kind of concerns that I have contemplated from the start. Although the book may be attributed to me as the editor, I believe that it is not I who is being published but rather each of these contributing children. By making these important ethical considerations, I was able to achieve my ultimate goal: to maintain the focus on these young child and teen authors.

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[From Mott Children’s Hospital blog] Sharing the voices of children with cancer

With excerpts from the Chronicling Childhood Cancer book, this blog post was included in the C.S. Mott Children’s Hospital Hail to the Little Victors blog. I’m honored to be a part of such an important initiative; I truly believe that “everyone has a role to play to block out cancer.”

Sharing the voices of children with cancer

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Week 6: Meeting Cancer, the “Emperor of All Maladies”

With a day full of rain, hail, and even thunder-snow, we elected to spend classtime watching the film adaptation of Margaret Edson’s play W;t. We decided to save our discussion of Audre Lorde, Angelina Jolie, and breast cancer for the following week, where guest speaker Dr. Janet Gilsdorf was coming in to speak about her experiences as a physician and as a breast cancer patient. I had been worried about how to show excerpts of W;t and do the film justice (I think it’s an incredibly powerful work), so I was happy to be able to show it to them in its entirety.

Lesson Plan Week 6

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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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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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