Tag Archives: Narrative Medicine

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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[AMA JOE From the Editor] “Nothing About Us Without Us”: Toward Patient- and Family-Centered Care

This article, excerpted here, is available in its entirety at the AMA Journal of Ethics

Around dinnertime on the second Tuesday of every month, a group of people gather in the Family Center at C.S. Mott Children’s Hospital in Ann Arbor, Michigan. Some are former patients, some are staff, and most are parents of pediatric patients, some of whom are deceased. They have been invited to share their perspectives and to help improve administrative decision making and care delivery.

I was first introduced to the concept patient- and family-centered care (PFCC) by this patient- and family advisory council (PFAC), an advisory body that promotes the inclusion of patient and family member perspectives in making organizational and practice decisions. As a student member over the past year, I’ve observed the dedication of these council members to improving health care culture by promoting PFCC values.

PFCC is built upon four fundamental principles: treating patients and families with respect and dignity, sharing information, encouraging their participation in care and decision making, and fostering collaboration in care delivery and program design, implementation, and evaluation [1]. At its core, PFCC is about including patients and families in all aspects of health care.

As part of a broader movement towards participatory medicine that advocates for collaborative partnerships in health care [2], PFCC means developing partnerships with patients and their families; recognizing their expertise by involving them as members of clinical care teams, advisory committees, and regulatory research boards; and promoting inclusion of patients and their loved ones in bedside and systems-level health care dialogues. Physicians can learn from patients and their families, and it is our responsibility to do so.

I first became interested in better understanding patients’ perspectives as an English major exploring disability studies and narrative medicine; I sought to understand persons’ health care experiences through their narratives. PFCC models of thinking encouraged me to broaden my scope and to appreciate the interconnectedness of patients’ and family members’ experiences. Although PFCC originated in pediatrics, the importance of families extends to all medical practice [3].

As I learned more about the tenets of PFCC and the many forms that PFCC takes in practice, I began to wonder about when and how striving to deliver inclusive care can be ethically complex. How should medicine accommodate families alongside patients, and what ethical challenges arise when trying to do so? Accordingly, this theme issue of the AMA Journal of Ethics considers some of the ethical challenges of implementing PFCC. In an attempt to make this issue as “patient- and family-centered” as possible, I invited feedback from the Mott PFAC and included patients and family members as authors…

 

Read the rest of this article at the AMA Journal of Ethics.

 

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Childhood Cancer Awareness: September is just the beginning

Every year, I am energized by the month of September. There’s something about Childhood Cancer Awareness Month that brings me back to the Friday evenings that I’ve spent with pediatric oncology patients and their families over the years. I am reminded of the time I devoted to getting to know these children and teens through my research; I have been so moved by these children, teens, and families. This month reawakens in me my desire to raise awareness of childhood cancer, namely by helping to spread the word about the Chronicling Childhood Cancer book.

It takes an incredible amount of courage and strength to do what these young authors, these children and teens, have done– to share their personal experiences with cancer. That’s why I want these stories to be heard by as many people as will listen. I believe that the Chronicling Childhood Cancer book really is unique and compelling, that anyone and everyone can learn something from it. I guess that’s why I’m so motivated to share these stories and shamelessly promote the book.

I’ve blogged extensively (and perhaps annoyingly) about the book, but here’s the rundown:

UnknownChronicling Childhood Cancer: A Collection of Personal Stories by Children and Teens with Cancer is a book that was created from a project that I started with C.S. Mott Children’s Hospital patients for my Honors thesis in English. All of the proceeds of this book are donated to Mott: 50% 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 Mott.

This month, I’ll be sharing daily excerpts from the book via Twitter to raise awareness about childhood cancer. It feels strange to be taking these quotes out of context and into the 135-character tweets, but my hope is that this is a way for me to make them more accessible to a larger audience. To offer a sneak preview of sorts, into the Chronicling Childhood Cancer book as well as into the personal lives of these young children and teens with cancer.

While September gives me momentum, I know that this one month is not enough for this important cause. So much has to happen, and to pretend as though one month were enough time to raise ‘enough’ awareness (if there even were such a thing) is absurd. So stay tuned for more about what I have planned for this year!

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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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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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