Category Archives: Literary Narratives

[Cancer Knowledge Network] World Cancer Day 2017

This article is also available at the Cancer Knowledge Network. Republished in honor of Childhood Cancer Awareness Month this September.

I could never have anticipated how much the field of oncology would excite me. As a teenager, I chose to volunteer with pediatric oncology patients on a whim. I found myself fascinated, and deeply humbled by the psycho-social challenges that these young patients and their families face. I found my way to medicine, and I wondered whether the medical field of oncology would be similarly intriguing to me.

It was. It was exciting for me to understand the patient population I cared so deeply about on an even more intimate level, as I began to make sense of the medical language and decision-making that so impacts these lives. As a medical student, I have had the privilege of caring for patients with a variety of cancers. I have helped care for patients with gynecologic cancers such as ovarian cancer, medically manage adult and pediatric cancers like leukemias and lymphomas, as well as surgically remove cancers like breast cancer and metastasized melanoma.

As I reflect on all my patients over this past year, my fondest memories come from caring for oncology patients. In the face of such a serious and devastating disease like cancer, I feel as though my relationships with patients were even more meaningful. I am grateful to have found a field that not only allows but encourages me to develop such intimate relationships while I care for people.

World Cancer Day is yet another opportunity for us to remember that cancer, like the human race, is inherently diverse. While we strive to find “the cure for cancer,” we must all remember how different each type of cancer is, as well as the great variety in how these cancers inhabit different bodies. Perhaps most importantly, cancer also affects each individual in a unique and unpredictable way. This month is a chance to appreciate the breadth and depth of all that people go through with cancer.

To me, World Cancer Day is a reminder that while we’ve made incredible progress over the years, we have so far to go. I am excited by the HPV vaccine, and the opportunities that we have for early cancer screening. I am encouraged by the Cancer Moonshot initiative and other efforts to fund further research. I look forward to increased awareness, as more people understand the harms of smoking and take steps toward cessation.

With this new year, I am realizing just how much I have learned about the biological disease of cancer, the clinical management and, most important to me, the challenges that people with cancer can face throughout and because of their treatments. With each new year, more people are diagnosed with cancer, but more people are also dedicating themselves to the cause of cancer. I look forward to seeing what this new year will hold.

 

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Judith Hannan: Missing Voices in Narrative Medicine

It is my honor to feature this blog post by Judith Hannan, author of Motherhood Exaggerated and The Write Prescription: Telling Your Story to Live With and Beyond Illness.

Recently, I participated in a Narrative Medicine workshop at Columbia University. This mini-version of the groundbreaking Masters in Narrative Medicine program created by Dr. Rita Charon posits that the literary arts—close reading, close listening, and writing—are a necessary adjunct to the medical arts to ensure compassionate, ethical, and high quality health care. Academics spoke about gathering and interpreting patient narratives, doctors led us in analyzing stories, and writers and film specialists examined work depicting the intersection of life and medicine. Missing was the voice of the patient unfiltered through the view of the doctor, professor, or writer.

I felt this absence again in Andrew Solomon’s otherwise excellent article in the April 26, 2016 issue of The Guardian. The title of his piece is “Literature about medicine may be all that can save us: A new generation of doctor writers is investigating the mysteries of the medical profession, exploring the vital intersection between science and art.” Is Solomon saying that only narratives by doctors have a place within the practice of medicine? And who is us? Is it medical professionals, patients, the general population? Are patient narratives being co-opted by the very people trying so hard to bring dimensionality to the people they are healing?

I am not a medical professional. I am a writer and teacher who focuses on stories of physical or mental illness from the point-of-view of the patient, caregiver, or family member. Writing my memoir, Motherhood Exaggerated, is what allowed me to understand how I had become transformed as a mother during my then eight-year-old daughter’s treatment for cancer and her early years of survival. For readers, the book gave them permission to tell their own stories. They brought me their tales like presents which heretofore had no one to unwrap them. It was then that I realized that the field of narrative medicine either had to expand to include the patient/caregiver voice or we need to create a new field—maybe narrative healing—not just to embrace but to elevate the value of these stories.

In a June 29, 2010 New York Times article, Dr. Abigail Zuger asked whether memoirs of illness should be held to the same standard as other writing. “Perhaps,” she said, “these books serve a different purpose from the usual book for the writer and the reader.” My second book, The Write Prescription: Telling Your Story to Live With and Beyond Illness, is a response to Zuger’s question. Personal reflection and intimate prompts help writers enter into their stories where they will find healing, not by moving on from the trauma that has occurred in their lives, but by discovering how to move with it. Unlike Zuger, though, I think all writers should tell their stories well, not for the purposes of publication or to attract more readers, but because better writing will result in greater insight and transformation. It is the difference between a recitation of what happened and placing those events within the larger context of a life, between cliché and a unique voice, between venting and discovering, between momentary catharsis and more lasting change.

Aspiring toward literary excellence will mean that the genre of illness narrative will broaden in appeal. Like any good book, the reader will both find a piece of him or herself as well as acquire a larger view of what it means to be human. And it will give control to the person whose story it is to tell. In “Fraying at the Edges,” (New York Times, May 1, 2016) N.R. Kleinfield creates an exquisite portrait of Geri Taylor during the years immediately after her diagnosis of Alzheimer’s disease. As Taylor talks about how so many services emphasize the caregiver and the later stages of the disease, she expresses a similar desire for control. “We don’t want to be done to, we want to do.”

This is an important message for anyone in the healing profession. Yes, doctors should continue drawing out the stories of their patients’ lives, they should continue writing and sharing their own humanity. But patient narratives have their own place. Their readership should extend beyond those who have had similar experiences to include the general population as well as those within the medical field.

If you want to contribute toward the language of medicine, the best way to approach your story is in small bites; trying to tell everything at once is too daunting and will prevent you from looking closely. Receiving a diagnosis can make you feel like you are no longer the same person. To remain in touch with the entire range of who you are, bring all your senses into your writing. Be aware not only of what is happening to you and inside of you, but what is going on around you. Read what you have written aloud to yourself. Writing gives us that tiny bit of distance that allows us to confront emotions, events, and fears that we might flinch from if we were speaking. Reading what you have written will help you recognize the feelings and discovery you have made.

You don’t need a special place to write or, particularly when you are starting out, a large amount of time. Here is a prompt you can do in ten or fifteen minutes.

NAMING AN ILLNESS

     My meditation teacher tells me that, whenever negative forces or thoughts arise, I should give them a name as a way of neutralizing them. It’s easier to talk to people than to feelings and talking can reduce the sting. Grief, for example, is an impenetrable block; Greta, though, is a woman with a soft voice, long hair shading her eyes, a slight limp; she is more comfortable in water than on land. I can lean into Greta to hear her speak, brush the hair from her eyes, take her hand and guide her to the rocking waters of the sea.

Anxiety is the character I meet most often. Her name is Sybil. She greets me with a stutter. I have known her for over forty years and she has changed. Her body is still made up of the same sharp angles. Her feet still pace as if they never need sleep, my heartbeat mirroring their uneven rhythm. She still takes me by the arm, whispers in my ear of things only her silver eyes can see. But it no longer takes as much strength for me to loosen her grip. Her hair, once black, spiky, and uncombed is now nearly white and contained by a headband. I used to Sibyl welcome; she loves a strong cup of Irish breakfast tea. These days I’m more inclined to stroke her long fingers, straightening and lengthening them before they can turn into claws.

Siddhartha Mukherjee, in The Emperor of All Maladies: A Biography of Cancer, says, “To name an illness is to describe a certain condition of suffering—a literary act before it becomes a medical one.”  The true literary act, though, is in the renaming of the illness, to give it a moniker that is uniquely yours. It is a way to address your illness in familiar terms and to communicate with others in a form they can understand.

Writing Prompt

Write about your illness, or that of someone for whom you are caring, as if it were a person. Give it a name. What does it look like—height, hair and eye color, skin tone, clothes, hands?  Describe its mannerisms, habits, and moods. Give it a voice. Talk to it. How, if at all, has naming your illness influenced your relationship to it?

 

03252014_LWC_Judi_Hannan_0470_Final 4x4.jpgJudith Hannan is the author of Motherhood Exaggerated (CavanKerry Press, 2012), her memoir of discovery and transformation during her daughter’s cancer treatment and her transition into survival. Her essays have appeared in such publications as Woman’s DayOpera NewsThe Huffington PostThe Healing MuseZYZZYVATwins Magazine, and The Martha’s Vineyard Gazette. She teaches writing about personal experience to homeless mothers and at-risk adolescents as well as to medical students, and is a judge of the annual essay contest sponsored by the Arnold P. Gold Foundation for Humanism-in-Medicine. She served as Director of Development of the 92nd Street Y and then for the Children’s Museum of Manhattan. She now serves on the board of the Museum, Jody Oberfelder Dance Projects, as well as on three boards affiliated with the Mt. Sinai Medical Center in New York—the Adolescent Health Center (where she now serves as President of the Advisory Board), the Children’s Center Foundation, and Global Health. She lives in New York.

 

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Bowties, Butterflies, and Band-Aids: a journey through childhood cancers and back to life

Bowties, Butterflies, and Band-Aids. That’s what childhood cancer looks like, according to Lyndsey VanDyke.

bow-ties-butterflies-band-aids-journey-through-childhood-paperback-cover-artThis memoir shares VanDyke’s “journey through childhood cancers and back to life.” From her first diagnosis with Wilm’s tumor at 11 to her relapse at 13 to her secondary thyroid cancer at 21, VanDyke’s coming-of-age has been especially scarred by cancer. With the voices of her family, friends, and care team alongside her own, VanDyke contextualizes her experiences within the views of others. She provides a more holistic perspective through this multiple lenses.

She organizes her reflections as The Cancer, Aftermath, and Reconstruction. In doing so, she illuminates her post-cancer experience, such as the paranoia from her numerous encounters, her experiences living in  fear. Even after pursuing a career in journalism, VanDyke realizes that her heart lies in medicine. She sets out on the path to medical school, eventually finding her place in Osteopathic Medicine.

“It occurred to me that medical school really wasn’t all that different from a cancer experience. It would be exhausting. It would strain my relationships. It would be insanely expensive” (307). And now, she’s Dr. VanDyke.

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a haiku

I’m not much of a poet, but I wrote a haiku!

Check it out in Pulse–voices from the heart of medicine.
Screen Shot 2015-09-11 at 5.29.41 PM

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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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Autistic Strengths and Stereotypes, My First Publication

Two years after its conception, I have officially published a piece of my writing. After being lost in transition and undergoing a series of  revisions, my review about literature for children with autism, Autistic Strengths and Stereotypes, has been published in Disability Studies Quarterly.

It’s been exciting for me to go through the publication process, to take an ordinary paper that I wrote for an independent study and turn it into something more. From corresponding with editors to revising and proofreading, I’ve enjoyed learning about the inner workings of the publication process. It’s an honor to be included as an author in one of my favorite journals.

Check it out! I’d love to hear your thoughts about my review:

Autistic Strengths and Stereotypes | Paul | Disability Studies Quarterly.

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Being Thankful for Cancer: A Huffington Post article

This Huffington Post article caught my eye:

Dear Cancer, This Is How You’ve Made Me Thankful.

Zoe Lintzers reflects on how she has observed the experiences of loved ones with cancer, and how cancer has helped her to better appreciate the simple pleasures of life: She writes perceptively about these experiences and her own realizations, presenting a convincing argument for what others can learn from disease and human suffering. Is illness something we should be thankful for? Despite the revelations that it may catalyze, does it demand our gratitude?

It was sometimes hard for me to look beyond some of her diction choices, though. She mentions the aunts she lost to cancer. Then she proceeds to tell of how  “[t]here are the brave others in my family who have been diagnosed in the past six years and are in remission, having triumphed over a disease that makes our eyes widen and our hearts crumble upon hearing that initial diagnosis. But they’ve prevailed and, to me, are the strongest people I know.”

But what does this mean for those whose lives were lost to cancer? Were they not brave? Just because they were unable to successfully triumph over their disease, does that imply something about their strength?

I’m sure that these were not intentional questions that Lintzers meant to imply. But sometimes I feel that this can be the danger of using what Arthur Frank called “the triumph narrative.” It’s interesting to me how prevalent this language is when it comes to communicating illness experiences. Especially with cancer, a disease in which war is literally waged against one’s body. But there needs to be an increased awareness of the latent effects of the triumph narrative.

Lintzers does, however, successfully portray her personal experiences with cancer as both a painful experience but also an enlightening one: “Cancer made me see that this is what it — life — is all about.”

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