Tag Archives: C.S. Mott Children’s Hospital

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

One Reason Why I’m Attending the University of Michigan Medical School

There are many, many reasons why I’m excited to be attending the University of Michigan Medical School this fall. But I think that they all come down to one fact:

I’m not done.

In high school, all I wanted to do was get out of Ann Arbor. Never would I have ever imagined living here as a University of Michigan undergraduate, not to mention staying on for graduate school. With each life phase though, I have gotten to experience a new dimension of Ann Arbor; I’ve come to truly appreciate all that this city and these people have to offer.

What I love about the University of Michigan is the passion and dedication within our community. I have had the pleasure of getting to know so many motivated and inspiring students, advisors, and professors. This is a community of individuals who are committed to encouraging passion, embracing innovation, and nurturing our curiosity as life-long learners. This place and these people have shaped me into the person that I am today. I look forward to continuing to work with familiar faces as well as meeting new people.

Despite the change instigated by moving out and coming to college, there is one thing that has stayed constant as part of my life: volunteering at C.S. Mott Children’s Hospital. Mott is a place where I have spent more than 5 years, hundreds of hours, and even birthdays. Every Friday, security personnel greet me, health professionals say hi, and the man at the parking structure always thanks me genuinely for dedicating my time as a volunteer.

Perhaps what I most value is that many patients and their families have come to recognize me just as I recognize them. It means so much to me that I have had the opportunity to get to know these individuals and develop these lasting relationships. When I catch up with these people, I am reminded of just how much these experiences have helped me to understand what it means to truly care for others. Mott is a place that I have filled with memories over the years, and I’ve realized that I’m not quite ready to leave it just yet.

I’m not done, and it’s such an honor that I don’t have to be. Forever, go blue.

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