Tag Archives: Illness Narrative

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

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:

boc web page banner image

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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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How to “Make-A-Wish”: Stephen’s Day as a Michigan Football Recruit

When people think about the Make-A-Wish Foundation, most people think about dying children fulfilling their last wish to go to Disneyworld. But Make-A-Wish Foundation is about so, so much more.

As a volunteer wish granter for the Make-A-Wish Foundation, I’ve had the opportunity to learn more about the organization from the inside and to understand what really goes into turning a child’s wish into reality. I firmly believe that I have the best job of all- it is my responsibility to spend time with children with life-threatening conditions and help them to realize their “one, true wish.” These wishes are about more than visiting Disneyworld but rather understanding what will bring each child the greatest joy they could ever imagine.

This past week, I was inspired to hear about an incredible wish that was close to home for me: Stephen’s wish to be recruited for the University of Michigan Football Team. Like many children, he lost his ability to play football when he was diagnosed with cancer. For his wish, Stephen got to meet his favorite football player, Michigan’s football coach, and even the football team in the Big House.

The only way to appreciate the great work of the Make-A-Wish Foundation is to witness his wish for yourself:

http://frontrow.espn.go.com/2014/07/wish/

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The Fault in Our Stars: Fictionalizing the Realities of Childhood Cancer

“This is not so much an author’s note as an author’s reminder of what was printed in small type a few pages ago: This book is a work of fiction. I made it up.”

-John Green, The Fault in Our Stars

The author’s note quoted above is one of my favorite pages in John Green’s The Fault in Our Stars.

When I first heard about The Fault in Our Stars, a book about childhood cancer that was also soon-to-be a movie, my initial reactions were as follows. Surprise, that the often hidden world of childhood cancer was being so prominently featured in a bestseller. Wariness, that this book which was quickly becoming a sensation itself would similarly sensationalize the lives of those with childhood cancer.

Reading the Author’s Note both confirmed and calmed my fears. I applauded Green’s straightforward commitment to the fictionality of the novel, for it cautions the reader not to use this story to make assumptions about childhood cancer. At the same time, it made me curious about his choice to use cancer as an intriguing literary device and how he would portray this reality, however fictionalized.

I found myself scrutinizing this book, expecting it to portray cancer in some false light that would spur further misunderstandings and stereotypes. But I have to say, after reading TFIOS, I was impressed by the power of Green’s language. The adolescent perspective, at times cynical and abrasively honest, allows him to successfully make real this foreign world of cancer. From the “Cancer Perks” that accompany a diagnosis to illness-catalyzed Encouragements, I thought that the story was overall written with great precision.

Interestingly enough, this was one of the first times where I preferred the movie adaptation to the book. To me, the witty dialogue and the comic relief interspersed amongst heartfelt emotion really came to life through the camera in a way that I didn’t quite feel when reading the book. While the book sometimes felt a bit bogged down by philosophical contemplations and at other times almost too simple, the film adaptation struck a balance between both the unbearable lightness and heaviness of being (a phrase I’m borrowing from Milan Kundera’s book)

Some critics have looked down upon this work as yet another in a new genre of “sick-lit” full of terminal illness and the devastations caused by disease. This idea warrants an entire post of its own (coming soon). I am glad that the TFIOS sensation is raising awareness of childhood cancer, but I can only hope that people take Green’s Author’s Note to heart.

“Neither novels nor their readers benefit from attempts to divine whether any facts hide inside a story. Such efforts attach the very idea that made-up stories can matter, which is sort of the foundational assumption of our species.”

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A Dance to Zach Sobiech’s Sandcastles: Dedicated to Youth with Cancer

Because dance is one way that I express myself, I’ve been wanting to dedicate a dance to the youth with cancer that I have spent time with over the years.

When I learned about Zach Sobiech, a teenager with osteosarcoma, his incredible musical talent resonated with me: the lyrics he wrote and the songs he sang expressed his inspiring attitude amidst his experiences with cancer. With subtle undertones of cancer, his music is simple yet powerful. One of my favorite songs by Zach is Sandcastles: a melodious, heartfelt duet with Sammy Brown about a far off land “where no one gets hurt and no one dies.”

Zach died one year ago today. My hope is that my choreography and performance of a dance to Sandcastles, speaks for itself.

Dedicated to youth with cancer.

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A Summer Solstice of Sorts

Although it’s been awhile, I’ve been thinking a lot about this website over the past few weeks. Remembering where it began, reflecting on how it has evolved, and postulating about what lies in its future. What began as a somewhat objective study of illness narratives has transformed to introspectively explore my personal navigation of the genre.

This summer, for the next two months before medical school begins in August, I will be doing something else that I love: traveling. From India to Paris to Spain, I’m really excited to have the opportunity to see more of the world. I am determined to make the most of this exciting time.

My ever-growing summer reading list beckons, and my travel journal of blank pages is waiting to be filled. I hope to refrain from technology (insofar as is possible) and instead feel the pages of real books and write through my thoughts with a pen in hand.

And so, this is a disclaimer: posts may be sparse over the next several weeks. But if this ends up being the case, then I look forward to returning with a refreshed perspective, developing thoughts, and new ideas for the future.

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