Tag Archives: research

Untold Stories, Unheard Lives: A Study of How Adolescents with Cancer Create Selfhood through Narrative

Since the upcoming release of my book Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer is just around the corner (8 days!)– my thesis is available at http://deepblue.lib.umich.edu/handle/2027.42/107767. It was truly an honor for me to be nominated and chosen as a recipient of the Virginia L. Voss Memorial Award for academic writing for this research.

My thesis provides more information about my research methodology as well as the scholarly relevance of these narratives. I wanted to make it available here to all those who may be interested in learning more about how these narratives were collected, what we can learn from these adolescents, and what we can do with these narratives moving forward.

Below is the abstract for my thesis:

Illness narratives, especially those about cancer, have become increasingly prevalent in recent years in an attempt to communicate experiences with illness. Yet amongst cancer narratives, experiences of childhood and adolescent cancer have largely been left untold. Stories shared about youth with cancer have mostly been written from other perspectives such as by parents, health professionals, or public relations personnel, but rarely from an adolescent’s own view. While some memoirs confront cancer retroactively, such as Lucy Grealy’s Autobiography of a Face, few or none are written by adolescents as they are currently experiencing cancer.

This thesis aims to fill the void of narratives by adolescents with cancer. Since cancer is a living reality for so many adolescents, it is troublesome that these youth have not had the opportunity to give voice to these experiences. It is problematic, I argue, not to listen to these often unspoken voices, for they can provide insight into marginal experiences as told by the ill. These narratives can reveal the subjective illness experiences of a diverse population.

My thesis explores how adolescents with cancer at the University of Michigan C.S. Mott Children’s Hospital express their experiences through writing, drawing, and speaking about cancer. I sat down with adolescent patients and asked guiding questions that they responded to through any or all of these mediums. These narratives illuminate how adolescents make sense of their cancer and treatment as well as how these understandings affect their developing sense of self.

My introduction begins by tracing the history of illness narratives and autobiographies about childhood to understand the current void, and thereby the urgency, of life writing by adolescents with cancer. In the first chapter, I delve into my research methods and the ethical concerns that arise with adolescent involvement and researcher intervention. I acknowledge how my methodological approach has in effect influenced the creation of these narratives.

Chapter two explores how adolescents define cancer and chemotherapy. While many defined cancer as a disease, elaborations often deviated to include but also challenge perceptions of cancer as an uncontrollable excess, an impairment or disability, and an evil. Many perceived chemotherapy similarly and sometimes struggled to distinguish between the two. I navigate through these blurred understandings, ultimately to recognize their implications on adolescents with cancer.

Building off these perspectives, the third chapter investigates how experiences of cancer and chemotherapy affect an adolescent’s sense of self. Narrative exposes conceptualizations of the self, specifically pertaining to the period of adolescence, the body with cancer, the self as a patient, the desire for normalcy, and the self as a social being.

In the fourth and final chapter, I expand the implications of my interactive research methodology and of these adolescent cancer narratives. I consider the broader impact my research may have on narrative studies, medicine, and the interdisciplinary fields of medical humanities and narrative medicine. Most importantly, this thesis enables adolescent agency and allows these individuals, with personal and intimate experiences of their own, to enter into the discourse that surrounds their lives.

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3/24/14: The day I turned in my Honors English Thesis

To be honest, this is probably the most important thing that I’ve done in my life.

My Honors English thesis

I know it sounds dramatic, but I can’t help but think that it’s true. I’ve been excited about writing a thesis since coming to college. I had no idea what it would be about, but I loved the idea of turning my own thoughts into something new. My English teacher once told me that I was a seeker; I enjoy turning to literature for answers and embracing its ambiguity. And in many ways, that is what I’ve done in my Honors English thesis.

It’s hard for me to wrap my mind around just how much of myself I’ve devoted to this research. But in many ways, this thesis is the culminating creation of my entire undergraduate education here at Michigan and more. Volunteering with pediatric oncology patients in high school initially piqued my interest; now, I’ve become dedicated to hopefully getting involved in childhood cancer as a physician. I needed to do this research: for these individuals with cancer who have had such an impact on my life but also for me, as a way of making sense of these unfathomable lives.

These final days have also been a time for remembering how fortunate I am to have so many people in my life supporting me. A close friend willingly contributed an extra set of eyes and an additional brain towards the editing process. From front to back, my mom read my entire thesis for typos. My dad morally supported me in the final stretch, and even my brother helped me to perfect the images. It’s been humbling to watch my loved ones step aside from their lives and devote their time to my own project.

Throughout the process, I’ve said that all I wanted was to be able to turn my thesis in knowing that I did everything I could and that I personally am happy with it. By my own standards, I believe that I’ve successfully accomplished this goal, and I couldn’t be more content.

If nothing else, the fact that I found myself eager to write this blog post and excited to dive into John Green’s  The Fault in Our Stars to celebrate  says something to me. I know that in studying literature, I’ve truly been doing something I love.

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Filed under Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative, Miscellaneous Musings, Narrative Medicine Research

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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Invited to Present at the WMU Medical Humanities Conference

“The humanistic dimensions of medicine and health.”

This is the phrase that first intrigued me about the Third Annual Western Michigan University Medical Humanities Conference‘s Call for Abstracts. I am excited to have the opportunity to present about my thesis research, Chronicling Childhood Cancer: Illuminating the Illness Experience, at this conference one week from today.

This is my first conference to attend and present at, and the uncertainty of what to expect is thrilling. The innovative field of Medical Humanities is so interdisciplinary; who will I meet and how should I tailor my presentation accordingly to this diverse audience?  What insight can I bring from my experiences in the field, and what do I hope to learn from others? How can I make the most of this incredible opportunity?

With funding from the University of Michigan Department of English, it is an honor to be able to attend, engage, and contribute to this conference.

 

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Bioartography: Art Inherent in Science

Microscopic slides = masterpieces.

Bioartography is a joint venture by scientists and artists across the University of Michigan campus. This program identifies the artistic nature of scientific studies and illuminates them through a microscopic lens. A panel of artists and scientists contribute their perspectives, and the profits of these sales fund scientific research. Some of these creations have even been adapted and pieced together as quilts by the Healing Quilts in Medicine program. By far, an art fair favorite.

Inspired by Bioartography, I created this collage.

A collection of tissue slides in the shape of a heart, although ironically not from the heart.

I <3 Histology

<kidney, mammary glands, liver,  prostate>

A collection of tissue slides in the shape of a heart, although ironically not of the heart.

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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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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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