Tag Archives: illness narrative research

1 Week till The Examined Life: Writing, Humanities, and the Art of Medicine

“There is art to medicine as well as science.” -Hippocratic Oath

I find myself thinking about this quote a lot throughout medical school. It reminds me of what initially fascinated me about medicine. While following the pre-medical track lends itself to a scientific foundation for medicine, my non-traditional experiences illuminated the art of medicine to me.

Last year, I found my place at The Examined Life: Writing, Humanities, and the Art of Medicine conference. I was excited to be surrounded by so many other people interested and actively working at the intersections of literature and medicine. These are people who are passionate about all things related to healing and medicine, reading and writing, learning and educating. And I am thrilled to have the opportunity to attend this conference once again, one week from today.

Last year, around this time, I was teaching a mini-course called Grand Rounds: Exploring the Literary Symptoms of Illness through Narrative. This year, I will be leading a discussion forum about this course and about what implications it may have for the use of illness narratives in pre-health education. As I’ve been preparing for our session and sifting through course materials and relevant scholarship, I’m reminded of how much I miss teaching. It won’t be quite the same as leading one of my discussion classes, but I’m really looking forward to the conversations to come.

As a flashback to last year’s presentation: I will also have hard copies of Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer available for sale this year!
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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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Thinking about the Chronicling Childhood Cancer book reading/signing event… Still

I have to apologize for the blog silence. Sometimes life gets in the way of things, no matter how important they may be to me.

Three weeks ago, it was my pleasure to hold a book reading/signing event for the recently published book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer. I had approached Literati Bookstore in downtown Ann Arbor on a whim, thinking that if there was any bookstore who may support this local book publication of stories by youth with childhood cancer, it was them.

Before I had even finished telling them the whole story, they had said “of course.” They kindly invited me to host an event to launch the book, to get the word out about it and raise more awareness about the cause of childhood cancer. They were so supportive about this project that they even wanted to donate 100% of the book sales from the event: as with the book, 50% of the donations would go to the Block Out Cancer campaign for pediatric cancer research at the University of Michigan and 50% to the Child and Family Life Program at the University of Michigan C.S. Mott Children’s Hospital.

I tossed around a number of ideas about what to do for the event, ultimately deciding that it would be best to let the children share their stories themselves. After I contacted all the young authors, we were fortunate enough to have three join us at the event (one other author realized that he had too much math homework that day, but I reassured him that was entirely valid and it made me smile to hear that school was his excuse).

It’s hard for me to summarize what happened that night. So hard that it’s taken me weeks to find the words to write about it (somewhat) coherently. The event as a whole moved me more than I had ever anticipated.

I had certainly been nervous about the event because of how sensitive this topic of childhood cancer is. I think that in the back of my mind I feared what could happen all along and how emotional the experience of sharing their stories could be for the authors of this collection. But in reality, I hadn’t mentally prepared for it.

By its very nature, the book reading was an emotional experience for the young authors as well as the audience. It was not easy for me to watch as these teens stood under bright lights in front of a room full of people, overcome by emotion as they shared their personal and very intimate experiences with cancer. I was struck by their determination and persistence to tell their tales- it was just one example of what courage in the face of cancer looks like.

After the event, each of the authors thoroughly enjoyed signing copies of the book. Even though the event had clearly not been easy for anyone, they were all eager and excited about the prospects of doing another book reading/singing event and maybe even meeting some of the other authors.

As far as this project has come, I’ve realized that I’m not done with it now, and I probably won’t ever be. There’s just so much more that I want to do to share what these children and teens have shared with me, and I’m as determined as ever to make the most of all that this project has taught me. But I also know that I need time, and that’s ok.

To this day, I am struck by just how much this event moved me. The standing-room-only audience of friends and family, health practitioners and local strangers. The kind words of appreciation expressed by these young authors and their parents. The knowledge that all that I have put in to this research, this book, and this event has touched these teens more than I had ever realized. It was overwhelming, in the best way possible.

Literati book reading signing event- Event Plan

Literati book reading signing event- Research Overview

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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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Kicking Off Childhood Cancer Awareness Month by Answering the Question: Why?

The long-anticipated month of September has finally arrived: it’s National Childhood Cancer Awareness Month.

President Obama issued a proclamation in honor of this occasion, recognizing that this is the time to “remember all those whose lives were cut short by pediatric cancer, to recognize the loved ones who know too well the pain it causes, and to support every child and every family battling cancer each day.”

Moreover, the proclamation acknowledges the multidimensional approach needed for childhood cancer awareness: “We join with their loved ones and the researchers, health care providers, and advocates who support them as we work toward a tomorrow where all children are able to pursue their full measure of happiness without the burden of cancer.”

As I have become more involved in the cause of childhood cancer, people have asked me why. And I think it’s important for me to be upfront about my background. No, I am not a childhood cancer survivor, nor do I have any close friends or family that have gone through the experience. But I believe that you don’t have to be personally touched by childhood cancer to care.

Volunteering with pediatric oncology patients at C.S. Mott Children’s Hospital was all it took to expose me to this different world. For me, getting to know these children and their families and witnessing how cancer permeated their lives made me determined to do something.

While I currently aspire to be a pediatric oncologist and to dedicate my career to these children, I also realize that a lot can change throughout the course of my medical education. Nevertheless, I know that childhood cancer will always be a cause that I hold dear to my heart– I know that I will continue to support these children and their families in whatever capacity that I can.

That’s why I am a firm believer in the Childhood Cancer Awareness Month campaign motto at C.S. Mott Children’s Hospital:

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Sharing the Clinical Relevance of Narrative at the UM Pediatrics Research Symposium

Instead of numerical values and statistics, my poster shared the words and phrases of children with cancer.  Amidst colorful posters with tables and graphs, my poster was adorned with drawings by pediatric oncology patients, such as cancer as a half-angel, half-devil being.

The 24th Annual Pediatric Research Symposium at the University of Michigan struck me as an interesting opportunity to share my narrative research with clinical pediatricians. I just began delving deeper into these narratives through a literary lens, and I enjoyed the challenge of reframing and furthering my analysis of these narratives for a medical audience. What does narrative illuminate about the living experience of childhood cancer? How do children conceptualize cancer and make sense of their illness experiences? And how can these narratives of pediatric oncology patients inform those who care for them?

Writing this abstract required more than inverting the active tense valued by the humanities to the passive tense valued in scientific writing. Designing this poster forced me to distill the numerous conversations and narratives that I have collected into a direct, concise argument. It was an incredibly helpful, albeit challenging, process.

From nearby poster presenters to practicing pediatric oncologists and more, it was interesting to discuss my research with a broad range of people and receive different feedback. One conversation in particular really resonated with me. A neighboring poster presenter asked me about my work, then confessed that she worked with pediatric oncology patients as a social worker for years. She said that it was a difficult and challenging position, one that ultimately surged her into depression because it was too much. To be able to work so intimately with these children, she said, “you need some kind of ‘distance.'”

This “distance” intrigues me. As we discussed this further, she explained that social workers preoccupy themselves primarily with the patients and families facing death, the ones struggling most with the interruptions of cancer. Physicians, on the other hand, have the chance to experience the broad range of paths that patients follow with cancer. The successful treatments, the ineffective drug regimens. This spectrum of outcomes helps give physicians perspective, but social workers by nature are honed in on the more despondent stories.

Is “distance” necessary for the emotional challenges of pediatric oncology? And if it is, what exactly does this imply about the impact of these childhood cancer narratives?  I wonder, how might these narratives complicate and possibly challenge this notion of ‘distance’?

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Show & Tell: A Presentation and Discussion about My Narrative Research

On June 5th, I’ll be giving a 20 minute presentation about my thesis research project to the entire Pediatric Oncology care team at Mott Children’s Hospital. Physicians (attendings, fellows, residents, medical students), nurses, nurse practitioners: all the individuals involved in the care of these children will be introduced to what my research is all about.

In preparation for this incredible honor, I wanted to participate in the Show & Tell series conducted by the Office of Enabling Technologies office at the Med School. My colleagues at Open.Michigan and  ET are some of the most enthusiastic and supportive individuals I’ve met; I wanted to get their feedback about my presentation and  give them a better sense of what I’m doing outside the office.

Overall, I would say that the presentation went pretty well. There’s still more for me to work on (as always), but it was interesting to find how much my passion for the project helped me organize and convey my thoughts.

Here’s the abstract and slides from the Show & Tell presentation–

Topic: Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative

Illness narratives, stories about the experience of being ill, are becoming increasingly appreciated by health professionals and by patients. I’ll be presenting about my own research in this realm at Mott, exploring how children with cancer express their illness experience through narrative. I’d like to have a discussion about what can be done with these narratives (publishing a book, etc.) and how technology can be involved in extending research that is centered on the patient experience. I’ll be giving a similar presentation about my research project to the Pediatric Hematology/Oncology department in June, so I’d appreciate any feedback about the presentation and the future of this project.

Chronicling Childhood Cancer- Show & Tell Presentation

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