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.”
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:
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.
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:
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.
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.
Filed under Miscellaneous Musings
To be honest, this is probably the most important thing that I’ve done in my life.
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.
This week, we had the pleasure of welcoming Dr. Janet R. Gilsdorf to join our class discussion. Dr. Gilsdorf is a pediatric infectious disease doctor at the University of Michigan. She is a breast cancer survivor. She is a writer, an author of two books: Inside/Outside: A Physician’s Journey with Breast Cancer (Conversations in Medicine and Society) and Ten Days. And she took the time to speak with the students in my class.
Having a guest speaker created a different dynamic for our class discussion, one that I think made some of the concepts we had discussed more real. Conversation ranged from Dr. Gilsdorf’s experiences and role in medicine to her time as a patient to her passion for reading and writing. It was a privilege for us to have the opportunity to speak with her.
Filed under Grand Rounds
Learning about autism in an English class was one of my early experiences with the intersection of literature and medicine. This week, it was especially challenging to condense a semester’s worth of studying autism and disability studies into a 1.5 hour class period. Nevertheless, I do think that it was one of the most enlightening class discussions thus far.
There seemed to be something different about our discussion this week. Autism seemed much more relatable, and more students evoked personal experiences with autistic relatives and friends. A number of students expressed feeling that there was much more to explore about autism, and they have decided to delve deeper into autism for their final projects (which I will discuss more in a future post).
This week, I was also observed by an advisor from the Honors College. I told my students that my goal was to get her to participate in our discussion, and I’m happy to say that we were successful! The class was very engaged; there were a number of moments where multiple students had their hands up, eager to participate.
When class was over, I left the room with a refreshed appreciation for this teaching opportunity. Each of the students (and my advisor) left with a new perspective on autism. In a world where everyone is touched by disability and/or illness in some way, I continue to believe that this kind of awareness is absolutely essential.
Filed under Grand Rounds
To mark the halfway point of my mini-course, I gave the students the opportunity to provide feedback. In particular, I was curious about what they were enjoying in the course and what changes they would like to see made in the time we had remaining. Were the readings too long or too short? Did they find class discussions to be productive and thought-provoking? Was the class meeting their hopes and expectations and, if not, were there constructive ways that it could be improved?
I was pleasantly surprised to receive overwhelmingly positive feedback. Students seemed to be content with the structure of the course- the readings were manageable, blog post assignments straightforward, class discussions stimulating. Many found the blog posts to be a great way to kickstart our class discussions and to get them thinking about the readings. A number of students expressed their appreciation for the multiple media we explored and particularly enjoyed watching film and video clips in class.
The only concern that was voiced by one or two students was that there was unequal participation in class discussions. As with any discussion class, I’ve observed that some individuals participate more than others, but I have also been content with the fact that each individual contributes to each class session. To some extent, disparity in engagement may be inevitable, but I’m hoping to incorporate even more small group activities and more consciously make an effort to get everyone talking.
Filed under Grand Rounds
Investigating Illness Narratives 