Tag Archives: Medical Humanities

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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An open invitation for guest blog posts on illness narratives

When I first started this blog, I was excited to seize the domain illnessnarratives.com. Now several years later, however, I’ve realized that the focus of my writing here has evolved, and I’ve felt uncomfortable about how many of my posts have been about me and my writing rather than on illness narratives in general. This blog has been alive throughout a good chunk of my journey towards a career in medicine, from my undergraduate to my medical school education. It’s been challenging to find my direction, to balance sharing my own personal writing accomplishments and experiences with my thoughts on illness narratives that I encounter

To that end, I’d like to try something new. I’ve always felt it strange that I was the only voice in a blog that aspired to comprehensively survey the landscape of illness narratives.

This is an open invitation to anyone interested in writing a guest blog post. Here are some examples of what I’m hoping for, but I would welcome a post about anything that interests you related to illness narratives:

  • Review of an illness narrative, be it literature, film, music, or any other media
  • An illness narrative of your own
  • Thoughts about illness narratives as a genre
  • Ideas about the ethics of writing about illness
  • Any other interest you would like to explore!

Your blog post could be as short or as long as you like. It could be anywhere from a paragraph to a few pages; whatever works for you. All you have to do is email it to tkpaul@umich.edu, and I’ll get back to you as soon as I can. It’s that simple. Please don’t hesitate to let me know if you have any questions at all; this will be a learning process for me.

I’m hoping that this might change things up a bit, and that I’ll be able to breathe some life back into this website. Because it’s summer, the world is anew, and it’s time.

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Discussing Illness Narratives in Pre-Health Education at The Examined Life 2015

Round two in Iowa City has already been a blast!

I enjoyed stepping outside of the medical school world and back into my literature/medicine enthusiast role at The Examined Life conference, where I led a discussion forum about “Introducing Illness Narratives in Pre-Health Education.” I shared some background about the undergraduate class that I taught, Grand Rounds: Exploring the Literary Symptoms through Narrative, and led a discussion about the broader implications of such a course in pre-health education.

It was exciting and less anxiety-provoking than I anticipated to lead the session. The room was less than ideal, for it was more of a lecture setting that a discussion room, but we made the most of it by moving towards the center of the room and engaging in both small and large group discussions.

One comment in my session particularly stood out to me when someone challenged the very label “illness narratives”; instead, he suggested that if health really is a spectrum, they should be called “health narratives.” I found this to be an especially powerful point that questions how our own terminology may impact and “other” our perception of these narratives and people. If only changing such labels were as simple.

As always, I was struck by the diverse range of people that this conference attracts and the many personal experiences that have led people here. Special thanks to all who participated in my discussion, and I’m looking forward to taking a step back and enjoying the rest of the conference!

Grand Rounds: Course Overview

TEL-Grand Rounds overview final

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1 Week till The Examined Life: Writing, Humanities, and the Art of Medicine

“There is art to medicine as well as science.” -Hippocratic Oath

I find myself thinking about this quote a lot throughout medical school. It reminds me of what initially fascinated me about medicine. While following the pre-medical track lends itself to a scientific foundation for medicine, my non-traditional experiences illuminated the art of medicine to me.

Last year, I found my place at The Examined Life: Writing, Humanities, and the Art of Medicine conference. I was excited to be surrounded by so many other people interested and actively working at the intersections of literature and medicine. These are people who are passionate about all things related to healing and medicine, reading and writing, learning and educating. And I am thrilled to have the opportunity to attend this conference once again, one week from today.

Last year, around this time, I was teaching a mini-course called Grand Rounds: Exploring the Literary Symptoms of Illness through Narrative. This year, I will be leading a discussion forum about this course and about what implications it may have for the use of illness narratives in pre-health education. As I’ve been preparing for our session and sifting through course materials and relevant scholarship, I’m reminded of how much I miss teaching. It won’t be quite the same as leading one of my discussion classes, but I’m really looking forward to the conversations to come.

As a flashback to last year’s presentation: I will also have hard copies of Chronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer available for sale this year!
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[From Mott Children’s Hospital blog] Sharing the voices of children with cancer

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.”

Sharing the voices of children with cancer

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Excited for The Examined Life conference: Writing, Humanities, and the Art of Medicine

When I attended the WMU Medical Humanities Conference last fall, I heard about an upcoming conference called The Examined Life: Writing, Humanities, and the Art of Medicine. And now, I’m fortunate enough to not only be attending this conference but also be presenting about my childhood cancer narrative research!

The Examined Life conference explores “the links between the science of medicine and the art of writing.” This conference seems to align perfectly with my own dual interests in medicine and literature. I think that participating in this conference will help me to figure out how I can maintain and balance both passions throughout my career, and I’m looking forward to meeting others in these fields with their own insight and experience to share.

At the Examined Life conference just one week from now, I’ll be doing something a bit different. In writing my Honors English thesis over the course of this year, I realized just how crucial my methodology has been in shaping the adolescent cancer narratives that I wanted to analyze. As a result, rather than just presenting about my research, I’ll be leading a discussion forum this time. Specifically, we will be discussing the ethics inherent in my methodology and thoughts that may be sparked from encountering these narratives. I’m curious, nervous, and excited to see what comes out of this discussion. I believe that these conversations will give me a lot to think about as I look towards further developing my honors thesis.

Here’s the abstract for my discussion forum:

Chronicling Childhood Cancer: Illuminating the Illness Experience through Narrative

I’ve never been to Iowa! I’m excited.

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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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