Tag Archives: Narrative Medicine

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

“The Heart of Medicine”: Published in The Intima, A Journal of Narrative Medicine

This month, my artwork I Will Wear My Heart Upon My Sleeve was published on the front page of The Intima: A Journal of Narrative Medicine! Check it out here:

The Intima, I Will Wear My Heart Upon My Sleeve

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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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Pondering Prepositions: Medical Humanities and Narrative Medicine

Rooted in the essence of humanity, health and medicine are inherently interdisciplinary. How are these fields intertwined with others? We express this entanglement through prepositions, mumbled words that can resound with significance.

Take, for example, literature. We can consider literature in/and/of medicine. There is a prepositional choice that we can make, one that urges us to consider the angle of our approach. We can do the same with other media forms like art.

In: Medical literature is present in medical education lectures, in research publications, in patient charts. Medicine has established an entirely different language with its own terminology, one that can manifest itself as a form of literature through scientific writing. The clinical practice of medicine is a dialogic exchange, a narrative. My understanding is that this area of study is largely encompassed by the field of Narrative Medicine, one that notes the literary merit of the medical practice.

Of: Literature has long been fascinated in the practice of medicine, its accomplishments and its qualms. There have been  writings about medicine for centuries. Some are the stories of  medical practitioners like William Carlos Williams, Oliver Sacks, Danielle Ofri. And others are written about the medical sphere from afar, such as the works of Ken Kesey, Elizabeth Moon, Sinclair Lewis. These literary texts seem to be the focus of Medical Humanities, which explores medicine through a literary lens.

And: I claim that this blog explores the intersection of literature and medicine: the ‘and.’ This intersection, however, is certainly a grey area. The ‘and’ balances the two fields, literature and medicine, declaring them as separate studies equal in merit. This introduces the idea that perhaps, because these are distinct, each has something to learn from the other. Maybe scholars can develop reading, writing, and critical thinking skills by confronting the medical profession through literature. Or analyzing literature can instill in health care professionals a different kind of care and compassion. The former feels more like Medical Humanities, the latter Narrative Medicine.

Prepositions

I believe that this is the realm shared by both Medical Humanities and Narrative Medicine. I’ve found that this grey area can be largely open to interpretation, but only through dissecting the fundamental threads within can we make sense of these fields and assemble these perspectives together.

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