Dr. Rita Charon at AMSA

A week ago I witnessed medical students discover new conversations and engage in narrative writing exercises at the American Medical Student Association Humanities Institute program. Thirty-four medical students converged in Sterling, Virginia to explore how the power of story helps them become better physicians.

As one of the invited presenters, I spoke to these future doctors about the writing process in crafting an illness narrative. I also shamelessly publicized my newly published anthology, The Art of Medicine in Metaphors. I was compelled and honored to share my heart surgery event in a graphic power point presentation. It was a simple message: those who tell their story are most concerned about being heard and my session celebrated the subjectivity and uniqueness of my illness experience.

AMSA has been hosting this program for several years and I am grateful to the organizers, Dr. Aliye Runyan and her associate, Niki Rarig, who offered their unstinting generosity during this 3 day collegial forum in creative workshops in poetry, medical journalism and story development.

I first met the enthusiastic Dr. Runyan at the University of Iowa and the Carver College of Medicine Examined Life Program in April 2011. She founded the AMSA Medical Humanities Scholars Program in 2008.

Runyan shared her views on the recently held program,  “I am inspired by the energy, enthusiasm, and professed need for this kind of work among students attending the institute. I believe the medical field will have to pay more attention to the need for wholeness in healthcare, for both practitioner and patient alike. Writing, reflecting, observing, and paying attention to one’s own wellness are critical elements in this endeavor.”

One of the conference participants, Elise Schlissel, a 4th year med student at the Perelman School of Medicine at the University of Pennsylvania, has been interested in literature and writing before she was an undergraduate.

Although Elise’s Match Day is fast approaching on March 15,  she did not reveal any anxiety about her imminent residency plans.  She was also quick to point out that like other medical schools in the nation, Penn’s  students have their own annual literary journal, Stylus. The publication includes poetry, prose and visual art.

Across the nation, more and more med students are becoming narrators since they welcome coherence and closure in their story. Additionally, it appears the Grand Rounds offer these future physicians more tools for listening to patients’ stories.

” I am going into pediatrics. My friends at school have a book club and I am involved in that but this was an opportunity that I did not want to miss, ” adds Elise.  Two weeks before this illness narrative writing workshop, I had sent these busy students a prompt to write a narrative about illness. In Elise’s story, “Sick versus Not-Sick” she conveys a meditative scene about her grandfather and the life lessons learned outside medical school.

” I wanted to learn that lesson in a lecture hall back in Philadelphia, surrounded by other eager, soon-to-be doctors, not in an over cramped hospital room in a small community hospital in New Jersey, surrounded by the people who loved him most. I wanted to learn sick versus not sick in medical school, not in life, but I guess you don’t get to choose this sort of thing,” writes Elise.

Other med students like  Shawen Ilaria and Julian K Hinson listened attentively to poets Veneta Masson, Dr. Richard Bronson and Dr. Marie Basile. Here is a link on Facebook of the many faces of these dedicated students engaged in workshops.

Dr. Basile, a recognized poet, spoke with me about her work as a colorectal surgeon, who has had many end-of-life conversations with patients and their families.  “Those conversations are never easy,” claims Basile. As a clinical assistant professor in the Department of Surgery at Stony Brook, she instructs med students in clinical rounds but appears to be an inspiring poet mentor for many of them.

Because I had to catch a return flight back to beautiful Myrtle Beach, I was unable to listen to the Dr. Rita Charon’s closing keynote address. However, I spoke with her on this wintry Sunday morning. I quickly expressed my deepest appreciation and respect for her continuing evangelism about the power of story in medicine. For that matter, I have adopted her book, Honoring the Stories of Illness, for my Literature and Medicine course at Coastal Carolina University.

Charon has been an indefatigable guiding force in helping health professionals, especially future physicians, recognize the need for empathy and sustained reflection about matters of the heart; not mere examination of clinical charts.

Her pioneering and celebrated Narrative Medicine Program at Columbia continues to offer bridges for those chasms that exist between patient and doctor. Her work in narrative medicine has been widely recognized by the Association of American Medical Colleges, the American College of Physicians, the Society for Health and Human Values, the American Academy on Healthcare Communication, and the Society of General Internal Medicine.

“I first used the phrase “narrative medicine” in 2000 to refer to clinical practice fortified by narrative competence—the capacity to recognize, absorb, metabolize, interpret, and be moved by stories of illness. Simply, it is medicine practiced by someone who knows what to do with stories,” claims Dr. Rita Charon.

For sure, AMSA’s focused Medical Humanities Institute guided writing program offers sustaining encouragement and hope to more students of medicine to write their poems and stories. There’s even discussion from several of the students and AMSA’s administration about producing their own literary journal.

I am reminded what another evolved physician, Dr. Abraham Verghese wrote, ” As physicians, we become involved in the stories of our patients’ lives, sometimes as witnesses telling the story through a medical chart. At other times, we become players in the story.”

Send me your valued stories.

More recently I have been engaged with friends about the role of caregiving. Of course, it  has become a pressing subject acknowledged by millions of Americans.  It’s all too easy to place this subject at a distant removal from our own often frenetic lives. We contend that caregiving must be considered in the context of life span needs that vary according to the ages, developmental levels, mental health needs, and physical health demands of both caregivers and care recipients.

One of my dear friends, Reverend Betty Drayton, a healthcare chaplain,  has spent nearly two decades helping family members address end of life issues. Now in this poignant story, “Prescriptions for Life”, she offers a personal vignette of her own mother’s end of life. The impending death of a loved one is always a difficult emotional time and none of us ever really know what to expect during a loved one’s final days or how we can prepare ourselves to handle the event. Here’s her story.

Prescriptions For Life
by Reverend B.J. Drayton

Seated in one of the most affordable, sought after nursing homes in our rural area of Sumter SC, I began to reflect and answer the DHEC surveyor’s request,   “Tell me about your mother.”

Initially I understood her question to be about mother’s illness experience which had been a 51 day exhausting experience ending in nursing home placement.  However as I began the litany of recounting the occurring saga, she said no, “Tell me about your mother.”

Having been a healthcare chaplain for 20 years, this was a story I felt capable of telling.  The story of the person I knew my mother to be.  Not the story of the medical community, not words of ill-fitting numbers, unpronounceable medicines, acronyms of CAT, PET, MRI, or neuro-science scans.

Although impressive, the 77 year old daughter of a share cropper would have no idea what they meant.  No this was a woman who gave her life to family and children, who worked in a daycare for 20 years cooking and loving the children that now were her nurses, doctors, and healthcare aides.  In the midst of a failing prognosis, I began to see who my mother really was.  Somehow, the prescription of life had taken on a new meaning while suffering, pain, and illness succumbed to love, family, relationships and memories.

The tangles in mom’s brain had forgotten to tell us of her progressive state of decline.  Each of her 3 trips back to the hospital, all within 30 days of each other, had come about by lack of ability to eat or drink.  Having an appetite for sweets, as the elderly often do, mother squirreled away nuggets of cookies in a napkin for a late afternoon snack.  Her usual robust appetite for food, no longer crossed the neurons, axions or synapses of the empirical manager of life.  Mom’s sight and hearing was very good, but did not account for the visions of her “mama” and husband, “Jim” who passed by the hospital room to welcome her into a new way of life.
Lost also was the sound of her voice, for after our second trip to the ER, that lasted 9 hours, mother again re-entered the hospital telemetry unit where another round of infused drugs fought the customary urinary tract infections of the elderly.

She learned once again how to stand, how to pivot to the bedside commode and graduated to walking the hospital corridor.  It was on one such occasion that Mom returned to her room winded and laboriously breathing.  She sat down to catch her breath and I watched her having a stroke.  That which was meant to give mobility had taken her speech, language, and ability to communicate.  The mother of 3 plus countless daycare children could no longer cook, eat, drink or stand.  That which gave meaning, value and worth to my mother, had been lost among the initiative to push for recovery.  In efforts to not overstay our 14 days in acute rehab; to meet the goals of the therapist; to comply with Medicare; to trust the gatekeeper physician; and to stay within the boundaries of a complex medical community, my mother had met the goals. She would be leaving the hospital. In efforts to recover to maximum potential, all was lost in the acute rehab unit.

Trip number 3 produced the unavoidable case consultation of quality versus quantity. My siblings and I were asked if Mom would wish to go on hospice and live out her days or get a feeding tube.  In hopes of pouring life into her body once again, the family opted for quantity. We needed time; time to gather, time to talk, time to reminisce, time to cry, time to remember and time to tell stories.  The feeding tube was placed. The nourishment the feeding tube gave was not to my Mom but to the family, to friends, to relatives, to caregivers, to children. The food we all needed was to be with Mom as long as we could. The most modern technological advances in science and medicine had failed to inject her with life but she had injected us. In the nursing home Mom began collecting people once again just as she had all of her life. Those who heard of her placement came to visit.  The oxygen machine continued to pump at a steady pace and rhythm keeping time with mom’s heart.  Hours, minutes, seconds passed and soon her heart seemed to outpace the oxygen machine.

On Saturday, November 24, 2012, a new medicine began to arrive between the hours of 5:30 am and 1:00 pm. The room’s veins swelled with loved ones.  A dose of memories, a hug from a friend, a kiss from a grandchild, the sound of a sister’s voice, cleansing tears, a taste of peace, the sight of all that is heartfelt, delivered the prognosis of freedom.  The gathering was complete. The dark night ended and the light shown through.  Mom’s spirit released.  The breath of her life joined the breath of the Holy Spirit and all was well with our souls.  Out of the silence flowed the voice of love and the stories of life.

The stories became a new “prescription” to sustain life. The stories will last forever and are healing balms. The medicine changed from narcotics, injections, blood checks, lab tests, and scans. Mom was no longer known as a chronic illness, disease, room number, or a stroke victim.  Mom taught us well; how to live on.  Mom was once again Mom, a person with a story, the story of a prescription to sustain her life and ours.

November 30, 2012

New title for Arianne ZwartjesMany of us have broken stories. Dr. Howard Brody wrote that “patients come to physicians with broken stories as much as with broken bones and broken bodies.”

Arianne Zwartjes, poet and director of the wilderness program at the United World College in New Mexico, offers in her newest book, Detailing Trauma A Poetic Anatomy, a lyrical examination of the many types of wounds found in body and spirit.

Most of us engaged in the field of Medical Humanities recognize that all storytelling is a personal act. For sure, Zwartjies crafts a brilliant poetic essay in this illumination of medicine, trauma, nature and a life. She writes.

“So often we avoid endings, as if that weight were too much to bear. Do we believe  in a beautiful world? as if it were lovely enough to die into. Lovely enough to balance the fracture. As if there were something we might care about. A kind of trust which we would crush for exposing us, for holding us raw–waxed paper to a window’s light.”

As a surviving heart patient, I have written extensively about the benefits associated with writing stories. There are others like social psychologist,  James Pennebaker, who espouses that the best therapy for psychological trauma is writing. And so many of us write.

Zwartjes describes unhealed wounds and losses but in breathless passages also extols the mystery of breathing and being in the moment.

” What is heart to us: this one small organ, glistening and crowned with arteries. Thorny tangle. (This little clump of muscle, chest lodged and unrelenting.) When we speak of heart. At the heart of things. You’ve won my heart. My heart goes out to you. Such a tiny, four-chambered thing. Ventricle mouths opening and closing like hungry carp. ”

She writes even more persuasively with such energy and enlivening sensibility.

” If what we are speaking of is grit. Take heart. She’s got heart. What we mean is stubborn doggedness, spunk, fight, clinging will. Pulsing red fist, desire: ferociously determined.”

Her new book is published by Sightlines, an imprint of the University of Iowa Press.

More and more health professionals, especially doctors are recognizing the importance of stories in the healing of themselves and their patients. Dr. Theresa Zink remains a fervent evangelist in underscoring the power of the narrative in medicine. Her newest book is entitled,  Confessions of a Sin Eater: A Doctor’s Reflections.
According to Zink, “a sin eater is a historical figure who sat alongside the bed of a dying man, often shared a meal, and heard the story of the man’s life, guaranteeing his passage into heaven.” The book examines the burdens and joys of being a family physician and walking along side patients through the best and worst of times.
I met this peripatetic author two years ago at the Examined Life Program hosted by the University of Iowa Writing Program and the Carver College of Medicine. She was dutifully engaged in signing copies of her anthology, The Country Doctor Revisited A Twenty-First Century Reader. This earlier work offered the reader insights in the form of essays and stories about rural medicine.
Her latest work helps promulgate the importance of self reflection in the next generation of health professionals. In many ways, Dr. Zink, along with other medical humanists, appears to have achieved balance in her practice as a physician and as a writer in listening attentively to her patients and health professionals interpret the illness experience. The self confessed organized doctor, serves as a director of the Global Family Medicine Pathway, drawing from years of international medical experience in Chechnya and Ingushetia, Brazil, and Central America. She also manages as an associate director of the Rural Physician Associate Program and teaches residents at the University of Minnesota St. John’s Hospital Family Medicine Residency.
She admits that maintaining a daily journal helps her in the writing process. With a busy professional schedule, her writing hours are in the early a.m. and on the weekends. She is presently at work on a novel.
The dedicated physician is quick to point out to medical students and others the value of self reflection. ” Self reflection is an important ingredient for being a good physician.” For sure, more and more Grand Rounds in hospitals around the nation, reinforce the efficacy of reflective writing as an established method for teaching medical students empathetic interactions with patients.
Whether processing through writing, or talking or some other venue, it helps me make sense of what may seem confusing or difficult. It helps me grow. It keeps one grounded, prevents burn out and helps me continue to find joy in my work day in and day out,” adds Zink.

Poet John Fox

John Fox is a certified poetry therapist and associate professor at the California Institute for Integral Studies in San Francisco. In many ways, John is an itinerant poet and offers his own version of healing chautauquas throughout the nation. Chautauquas were popular in the late 19th and early 20th century bringing entertainment, education and enlightenment to communities. While this peripatetic poet has no need to pitch a tent for his poetry revivals, his words and demeanor work wonders for those participants in his poetry workshops.

Fox’s Institute for Poetic Medicine founded in 2005 serves to help heal broken bodies and stories through poems and stories. His next circuit stop is San Diego on April 27-29. His holistic version of writing poetry enables many individuals to address emotional issues and to offer solace to agitated hearts. This scheduled program is called, My Heart Broke Loose on the Wind: Recovering a Sense of Freedom and Surprise.In a recent e-mail John wrote to me. “When your writing is met deeply and allowed to†flourish in ways thoughtful people develop   with extravagant permission and genuine support to risk and try things out, when all of your feelings are welcomed, poetry as healer can take deeper root. Your unique way of writing can help mend brokenness and bring meaning to yourself and to others in a tremendously wide range of ways. “John’s poems, especially “When Someone Deeply Listens To You” is a poignant reminder about the importance of listening. Something that more physicians need to be attentive to when they are seeing their patients. The patient often begs for anyone and especially their doctor or surgeon to hear their broken story.I also want to bring to your attention an upcoming program that John Fox along with Dr. David Watts and poet Joan Baranow host in San Rafael, California on July 14-16, entitled, The Healing Art of Writing: A Workshop Exploring Creative Writing and Healing. Last year I shared with one of my English classes at the University of South Carolina Sumter,English 285 Literature & Medicine clips from the excellent documentary, Healing Words:Poetry and Medicine. In that compelling video, John Fox weaves his magic as a poet, encouraging patients to write their poems. As a teacher and as a recovering heart patient, I know this is good medicine.

Send me your poems and stories.

Virginia Grove

As the first signs of Indian summer appear on the horizon in northeast corner of Pennsylvania, I received this illness narrative from Virginia Grove, a poet, writer and an adjunct English professor at Misericordia University, a small liberal arts college, founded by the Sisters of Mercy and located in Dallas, PA.

No doubt, when the courageous young teacher walks to her English class, she is mindful that the college’s name translates as “heart of mercy.”

According to Grove, her Master of Arts degree was “actually a memoir-ish work around the concept of breaks– mental and physical breakdowns, vacations and holidays, — but thematically, for a work that started as one based around the break, it is about connections…things coming back together. “

For Virginia Grove and for so many others, health issues are an omnipresent concern. In her family, both grandmothers died from cancer. Her father has suffered two heart attacks and she received a Stage IV Hodgkin’s lymphoma diagnosis at the age of 31. As if this were not enough challenges for any one person, her partner, at the age of 35, underwent open heart surgery to correct a congenital defect, including the replacement of an extensively damaged valve.

This steady unfortunate stream of bad luck reminds me of Claudius’s speech in Hamlet, “When sorrows come, they come not in single spies but in ballalions.”

Currently enrolled in an MFA program, Grove’s road to life is helped by writing about her illness. She send me this e-mail, “ I did not enter this program expecting to write about illness—about it’s effects on body and mind, about the breaks it causes in life, and oddly enough, about connection, yet, in the midst of sleepless post-chemo nights and nervous days, I was unable to avoid writing about illness..about life.”

The following is Virginia Grove’s a excerpt of BREAK, a work of creative nonfiction about that life.

BREAK—an excerpt

I’m alive for three seconds every morning.

Four seconds in, I realize I have to do it again.

I deliberately brush my hand over a bump the size of a dog toy squeaker just under my skin below my left collarbone at five seconds, and a second later remember this port-a-cath—this two sided, stainless steel drug box for which I carry a card in my wallet in the event I must go through the scanner at an airport—is there because I have cancer. And bad veins.

Seven seconds of twenty-four hours and I know my veins aren’t really bad—it’s that I am too fat for this nurse, that doctor, the venipuncturist, the PET scan man, to find a blue vein under all my blubber. By eight seconds, I remember how fat I am, feel fat, hold on to fat, and by nine that without hair I look fatter still.

At ten seconds I start to remember what hurts—what bone or what memory. Physical pain is preferable—the ache of another needle breaking skin, twisting and turning until it punctures a vein and is withdrawn, leaving a red pinprick surrounded by a purple cloud of bruise on the surface of my skin. The physical pain keeps me present.

The needle is constant.What once was just blood now carries toxic medicine and cancer.

These toxins fuck up my alphabet—nurses push the A, then the B, but then a V and hang the D—adriamyacin, bleomyacin, vinbalstine, and darcarbazine. When I look at the chemo drug acronym I remember a sign which reads ‘Welcome to my OOL. Notice there is no P. I’d like to keep it that way.’ ABVD—notice there is no C. I’d like it to be that way because C stands for cancer and that’s good enough for me. Be all you can B. Get rid of C with ABVD! Somewhere there must be a group of hairless, steroid-puffy Hodgkin’s Disease Cheerleaders shouting

A
B…
V…
D
Be A- gressive—
B—E— A-gressive—
Killlllllllllllllllllllllllllllllllllll CANCER!

At which point they jump into the air and do a split right next to their IV. I will not be doing splits of the physical variety.
One year after and off my own radar, I look forward. My hair is coming back in, curly.

Eighteen months after curly, the curl has gone. I move through an audience of selves I never desired to know.
Eighteen months after my months, Kim carries a card in her wallet too, in case she ever needs to go through a scanner at an airport—because she had her valve replaced—because, like me, they found something inside her before either of us passed beyond our mid-thirties.

I hear a ticking from her chest—a soft ticking as though I were resting my head on a wristwatch each time the valve opens and closes. I cursed the ticking from the clock on the mantel the night they took my father to the ER when he had his first heart attack. The repetition of the strikes—the time breaking into fragments of eternity—drove me to a panic.

Years after his first issue, over a year past mine, not a year past hers, this ticking tires my eyes.

This ticking doesn’t break time…this ticking strikes, reminding me of more time, more
opportunites, to thrive.

Virginia Grove can be contacted at vgrove@misericordia.edu.

Send me your stories. They do matter.

The accolades and applause echo for Kate Hawkes from Thunder Mountain’s red rock peaks in Sedona. She’s a recognized healer, blogger. writer, and theater artist. Trained at Duke University as a consultant with the Society for Arts In Healthcare, she embraces “empowerment through the creative arts” and has worked with organizations from the East to West Coast.

She recently wrote to me after learning about the call for submissions for Medicine & Metaphors: Writing From the Heart writing event in an article, “The art of healing gets the last word” written by David Lauderdale.

“ I’d like to write about the Performing Wellness process I created which certainly facilitates healing and wellness at many levels” claims Hawkes.

As a personal coach and theater professional, she has worked with individuals and small groups with chronic or life-altering experiences. Her work culminates in public theater performances.

Adding much ballast to the therapeutic benefit of theater, Margaret Edson’s Pulitzer prize-winning play Wit describes a patient’s battle with cancer. The playwright suggests that theatre does offer a suture for the soul. Dr. Daniel Sulmasy writes about the play’s impact on our lives. “We need to learn, at least as professionals, what it is that is broken in our relationships and what it is for which we must say (coherently) that we are sorry.”

Hawkes, an energetic and peripatetic artist is also the creator of Performing Wellness, the process that uncovers and releases the creative ‘wild child’ muse, shares those stories in public performance and promotes healing.

She has facilitated and produced more than 8 Performing Wellness productions. She has worked with individuals living with cancer, HIV/Aids, Multiple Sclerosis, Rape and Sexual Abuse, and war-related Post Traumatic Stress Disorder. She hopes with funding in place before the end of the year to start a program with the VA to help veterans in the community.

She’s currently engaged in a Women’s Playwright Festival as playwright, director and actress in three of the 10 minute plays.

It appears that everyday is a summer solstice for Kate since she’s tapping in an abundant range of Sedona’s light and kindness.

Send me your stories.

I first met Sara Baker in Iowa City a few days in advance of Easter 2011 just as the hyacinths and crocuses began displaying their dazzling colors after the dull and grey days of winter ended. We assembled along with academics, doctors, nurses and poets at the Examined Life Conference held by the University of Iowa and Carver College of Medicine.

Sara is lightning rod for energy and optimism. And like South Carolina Poet Laureate, Marjorie Wentworth and San Diego-based Sharon Bray, these vibrant and engaged wordsmiths are each helping cancer patients tell their story.

Baker through her writing workshops in Athens, Georgia bears witness to the stories of cancer survivors. Of course, she is quick to admit that many struggle with addressing their traumatic event.

In an essay entitled, “Tell It Slant: History, Memory, and Imagination in the Healing Workshop,” presented to attendees at the Medical Humanities program in Iowa, she writes. “ I have had some patients able to write directly about their illnesses but many others who were only able to touch on traumatic events obliquely. One patient was able to write directly about her own cancer (she was in remission) with a great sense of purpose: This memoir was her gift to others struggling with cancer. Yet even she was unable to finish the section about her husband’s death.”

From her decade long work, Sarah Baker along with Sandra Scott bundles a poignant collection of stories taken from her valued workshops. It’s personal for sure since the editor and writer chronicles part of her own journey in A Communion of Sorts.

She begins with this memory.

Ten years ago, I welcomed my first students to the Healing Writing Class at the Loran Smith Center for Cancer Support in Athens, Georgia. Little did they know how nervous I was. I was no “expert.” Yes, I had a life-long passion for the written word resulting in a respectable number of publications, and fifteen years of teaching college English. But my main impetus had been an intuition and desire born of my own mid-life journey.
I was thirty-nine and my writing career seemed to be on track. My novel had been a finalist in a national contest, I had a scholarship to the Squaw Valley Community of Writers, and I had been publishing regularly in small magazines. Then, suddenly, everything changed: my father died, I suffered severe complications in childbirth, I was diagnosed with a mysterious and intractable illness, my husband had emergency heart surgery, my mother collapsed with a brain aneurysm and I became her caretaker. Did I mention I had a thirteen year-old daughter?

Read more here.

No one disputes that more and more academics and doctors are sensitive to the benefits associated with the telling of the illness experience. And as an academic now teaching a new course in Medicine & Literature this fall at the university, I believe that students can learn from a close reading of Chekhov’s stories or Reynolds Price’s memoir. A Whole New Life, something about empathy and compassion.

I encourage others to read Baker’s new anthology, A Communion of Sorts, it offers much heart. – James Borton

In a blog entitled, “The Language of Medicine,” Robert Swendiman, a medical student at the University of North Carolina Chapel Hill, reveals the process of writing a “patient narrative.” In one of his classes, Medicine in Society, the students were asked to not only describe a time they were ill but to write about their experience. In his prescient commentary, he wrote, “ Before I started school, I was told there are two types of med students who think they have every disease they learn about, and those who believe they are invincible.”

It becomes clear that more medical students are learning empathic skills because of their new narrative medicine classes and along the way, the classroom experience spurs more of them to develop weblogs. Lucky for us readers of these med weblogs, students are also learning the art of constructing and listening to story. After all, the spine of narrative medicine instruction is to make all of us attuned to the structure of stories and their levels of meaning.

A swimmer and rapper, Swendiman also sent me an e-mail explaining what blogging represents to him as this stage in his pre-medical career development. For sure, med bloggers, do recognize the gains associated with their online journaling efforts.

Each day additional healthcare professionals and medical students join the blogosphere, providing a new voice and in the process a chronicle of their development.

“I blog because writing is a vessel for learning, even though my prose leaves much to be desired. I look forward to looking back on how I felt and what I was thinking at different times in my medical career. When I go back and read past blogs, I realize how little I knew (not just academically, but emotionally and spiritually). Imagine what I’ll know a year from now, or ten years from now. Medicine is a field where you learn for the rest of your life, and I like checking in every week on my progress,” adds the aspiring physician.

Keep writing and send me more stories.

At a time when participatory e-Medicine offers networked patients the shift from being mere passengers to responsible drivers of their health, it’s no wonder that organizations like the Society for Participatory Medicine have popped up along with specialized organizations like the ICD User Group that provides support, education and advocacy for recipients of implantable cardiovascular defibrillators .

These life-saving battery-powered electrical impulse generator implants for heart patients are the sentinels for many who may be at risk of sudden cardiac death. According to the ICD blog directed to implant recipients, the “device, not only saves lives, but collects and stores comprehensive patient, device and physiological data that can indicate the progression of the patient’s heart disease.”

Although the implant electronically transmits heart data to the physician via the Internet, it excludes any patient access. What’s wrong with that remote monitoring picture?

Patients, especially heart patients, demand to know the uncertainties, mysteries, and progress of their heart. With the escalating number of e-patients, the framework is already in place for increased patient rights and shared decision-making. There’s a new conversation and it’s largely about the need for a narrative shift between patient and physician. Dr. Jack Coulehan, captures this plainly in his essay, “Today’s Professionalism: Engaging the Mind but not the Heart.”

He writes. “ Medical practice is structured around narrative—between physician and patient, teacher and student, and the like. However, as a result of the tension between explicit and tacit values, students learn to objectify patients and to devalue subjectivity. In part, they learn to conceptualize their patients in terms of flow sheets, (ICD heart data flow -ed. remark) rather than personal stories.”

Maybe those doctors capturing the data from the ICD have forgotten the one basic certitude; the patient’s story.

Hugo Campos, the founder of the ICD blog, shares a story about his heart condition. It is entitled, “My journey from patient to consumer of health care.” Click on the link for more of his story. At the age of 37, Campos was given a diagnosis of hypertrophic cardiomyopathy. According to Campos, HCM afflicts 1 in 500 people worldwide, and may cause the heart to develop a deadly arrhythmia.

Send me your stories. –James Borton