illness narratives » All Heart Matters

Online Writing About Illness Expands Empathy

Every day more and more individuals are writing their stories about illness. It is a fact: millions of us will live for several years with a condition that ultimately kills us; increasing numbers will experience the gradual loss of memory from dementia or stroke. So we scribble daily in our journals and write our blogs as a way to protect our dignity and independence.

As I have shared with you in my previous posts, this past semester, I taught an online course in Literature & Medicine at Coastal Carolina University. My students were encouraged as part of their first writing assignment to write a reflective essay on how illness has impacted on their lives.

Their essays were honest and poignant. This writing assignment along with others during the semester, challenged these students to learn about their capacity for empathy, moral growth and restoration of the patient’s humanity. I read recently in James Kelly’s beautifully crafted book, Where Night Is Day, that quietly reveals, that “ one way to discover the meaning of illness is to make a story of it, to make your experience a narrative.” Kelly works in critical care as an RN in the ICU at Lovelace Women’s Hospital in Albuquerque.

Most of my undergraduate students successfully understood Kelly’s sensitive narrative about how increasing numbers of people display courage and grace in the face of illness. I am sharing this story written by one of my students, Nakeava. It is entitled, “The Yellow Envelope.”

The Yellow Envelope

I can remember the day my mother walked into the house with a yellow envelope after coming back from the hospital. Before she left the pain that I could hear in her voice was so powerful that I could feel it as well. She’s been moaning and groaning for as long as I could remember so I pushed her to go to the hospital. “Mommy what did they say?” I asked. She responded “Well baby they diagnosed me with this disease called Lupus, and that’s what has been causing my excruciating pain lately.” My mother always sat in bed and cried about her joints and how much her body was aching. “Come put a pillow up under my leg”, she would say or “please come rub my back” she would cry. Little orange pill bottles took over her top dresser drawer. If you didn’t know any better you would swear she was some kind of addict. She would take some in the morning, some before bed, and some just while she was experiencing pain. As she continued to read her results to me, they also said she had fibromyalgia. All of this is what has been causing her joint pain/ stiffness and the fluctuation of her weight. I was somewhat happy that it wasn’t her being stressed from my siblings and I that caused all of this pain and weight gain.

At the age of ten I wasn’t sure what any of this meant. “Mommy is you going to die?” I would constantly ask. She would often cut me off in mid sentence and explain that with God on her side she could defeat any disease. That following month my grandmother and I had to rush my mother to the hospital because she was experiencing the same pain as the time before. After sitting in the cold room filled with silence the doctor came in and poked her with all sorts of needles and gave her pain medicine. Eventually, we found out that she was not taking her medicine as she was ordered to. She would constantly cry out “My weight just keeps going up and down that is not attractive.” The doctor explained to her that no matter how healthy she felt at the time, until she has totally survived lupus she should do as she was told. After that visit we no longer had problems with my mother making excuses on why she couldn’t take her medicine.

Lupus is a chronic inflammatory disease that can affect various parts of the body such as skin, joints, kidneys and blood. My mother’s lupus affected her joints. This disease is considered chronic because the symptoms last longer than the other symptoms. Lupus is considered and autoimmune disease as well because the immune system cannot tell the difference between bacteria, germs, viruses and healthy bodily tissue. Therefore the autoimmune system creates autoantibodies that attack and destroy the healthy tissue. This is where the inflammation of the joints comes in. The pain is random and can happen at any time and when it does, it’s hard to do certain things such as standing too long or the movement of phalanges. Fibromyalgia is also a chronic disease. It’s related to arthritis. At any age you can get lupus but, it is more common in older woman at the ages 40 through 50. After researching lupus, I knew that it was way more serious than what people explained to me prior.

I was never good with dealing with the pain and suffering of others. It hurt me more seeing my mother in pain than myself sick or in pain. To me she was too young to be going through all of this. Only forty years old. She was my Queen how could this happen? There was no one else I could depend on she couldn’t die. I often wondered was she reaping what she sewed. A thousand thoughts ran through my head at the time. She was too good of a person (I believed). Every day she constantly reminded me that everything happens for a reason. Of course I had to look at everything with a positive perspective because I had to be strong for not only her but for my brothers as well. Maybe she was blessed with the disease so that she could talk and educate others on lupus and the symptoms. She always said she wanted to make a difference in someone’s life. Maybe this was her opportunity. After surviving Lupus she went to multiple charity events and support groups to preach to everyone about having hope. Her speaking out to people encouraged me to view every situation as a blessing. Unfortunately there are many people that has lost a life or a loved one from lupus, not my mother. She survived and is currently stronger and healthier than ever before. I must say we are extremely blessed. I guess that yellow envelope wasn’t as bad as I thought it was after all.

Send me your stories.

James Borton mail to 2.0medicalhumanities@gmail.com

Medical Bracelet Identification Translates into Story

American Medical ID

I recently communicated with American Medical ID and discovered that they have encouraged many individuals to write their stories related to illness and to the use of medical identification. American Medical ID’s program is entitled: Life Stories: Tell Us Your Story. It offers much encouragement and reinforcement about why story matters.

For example on American Medical ID’s Life Stories, there’s a compelling story from Adelia who writes. “I was diagnosed with congestive heart failure in ealry 2009, I was only 20 years of age. I have been told that I only had a day to live, if I didn’t get help fast. Over the past two and half years, I’ve been in and out of the hospital. I’ve also had a Left Ventricle Asist Device (LVAD) placed… On September 7, 2012, I received a heart transplant. I am now a 24-year old with a new heart and have been doing well ever since. Having this medical ID bracelet will allow people to know of my medical condition as well as save my life.”

American Medical ID serves the medical community and the public at large by offering quality medical IDs that, in a medical emergency, allow medics or other medical professionals to give prompt, precise treatment. For sure there are compelling reasons to display this medical identification:

* More than 95 percent of emergency responders look for a medical ID.

* In an emergency, properly engraved medical IDs provide time-saving and easy access to life-saving medical information.

* Many symptoms in an emergency can easily be misdiagnosed without a medical ID.

* Medical IDs can reduce medical errors, prevent minor emergencies from escalating and potentially reduce medical costs.

Since I am now taking Warfarin to address cardiovascular issues, my medical identification may prove life saving. If you have been diagnosed with a chronic condition, have food or drug allergies or take medications, then you should wear a medical ID. Also, I discovered that Lauren’s Hope Blog extols the benefits and reasons for wearing medical identification.

There are even new types of digital medic identification alert including a USB medical alert tag. This is essentially a USB flash drive that contains an individual’s emergency information. Because of the memory on the flash drive these USB medical alert tags are capable of carrying more information than the conventional medical ID bracelet. Information such as medications, existing conditions, doctors and emergency contacts can all be stored on the USB tags. Remember to wear that medical ID alert. It can save your life.

Illness stories enter the online humanities curriculum

This semester at Coastal Carolina University I am now teaching a new online course in Literature & Medicine with 24 students enrolled. This was a course I had previously taught in a traditional classroom with a chalkboard rather than with my present adoption of the ubiquitous Blackboard.
The shift from print to digital content has reached critical mass and continues to accelerate. Examine the number of MOOCs, or massive open online courses that have sprung up like wild flowers across the nation. Of course, my online course carries a tuition, credits and limits enrollment. On the other hand, MOOC is credit-less, free and massive. While many educators applaud MOOC’s ideal with its myriad of free courses that may bring the best education in the world into the darkest corners of the world, I am parochial in my digital vision and feel that the first steps of university should take are to reach out to our own students through digital humanities courses that offer lessons about empathy.

This semester my course seems to be doing just that with students engaged in a close reading of books like Arthur Frank’s The Wounded Storyteller and even the recently edited anthology, The Art of Medicine in Metaphors.
Here are the set of objectives I mapped out for them in my online syllabus:
This Literature & Medicine course looks at the relationship between literature and medicine, by focusing on important literary works of fiction, plays, poetry, and non-fiction, revealing how medical issues are at the root of many of the vital questions of our age.

Students will:
 Learn how to identify the connections between medicine in literature, poetry, memoir, and film.
 Research illness weblogs from the perspectives of both doctors and patients.
 Learn how to post responses on weekly forums.
 Write reflective essays.
 Understand the emotional, psychological and cultural contexts of literature.

I have joined digital natives in evangelizing about how the online writing classroom succeeds in immersing students in analyzing digital media, in crafting digital personae, and in fostering both critical and empathic writing skills in the examination of illness narratives.

Here’s how some of my students are responding to assignments about illness narratives.

Preston writes:
People want to be heard. When we are well we want to be validated. Once we receive a formal diagnosis there is this awful feeling of being less than perfect. Less than you were. Less strong, less centered, less whole. In storytelling, we are seeking validation. We want someone else to understand the chaos in our minds and bodies. We need to navigate through the chaos. “Stories have to repair the damage that the illness has done to the ill person’s sense of where she is in life, and where she may be going” (Frank, 53). Illness impacts identity. You become the patient, the sufferer, the survivor, all are negative words that see the individual as less than not greater than.

In Arthur Frank’s The Wounded Storyteller, he references Ronald Dworkin’s metaphor of illness as shipwreck. As a diver I can relate to this metaphor. Being in the wreck on the bottom of the sea time slows, sediment floats by, visibility is minimal, barnacles and other creatures live off the wreck. Just as the invading cells live off the human being they have invaded.
Caitlyn shares this observation. Most people experiencing illnesses tell quest stories because their illnesses are just that—a quest. Illnesses are an adventure that one must endure, and each adventure has a past, present, and future. The past adventures are the person’s life prior to being sick. The present is how she or she is coping with the disease now, and the future implies where the illness will take the person and how it will forever affect him. The stories people tell about their illness give them the chance to share their event with the world and also help them understand what is happening to their mind and body. The patient can let out all his built-up frustrations. Rather than reciting the details of his condition to everyone who asks, he can show them his story, which reflects his soul. After thirty years in remission, a cancer survivor can return to her story and vividly recall her battle. In “Lumpectomy,”poet Joan Baranow comes to terms with the loss of her breast. She initially recounts the sadness she endured, but ends the poem by expressing the joy she has gained with her new self. Joan writes, “Lovely the life left with its stitches” (Borton, 39).
Another student writes. A quest is a path that an individual takes not knowing where it will take them or when will it end. In The Wounded Storyteller Arthur Frank states,”Stories are a way of redrawing maps and finding new destinations”. When an individual is going through a illness in their lives their story is rewritten to tell others what their quest was like and what new locations they had to go to dealing with their illness. In Joan Barranow’s poem “Lumpectomy” she reveals how a person may receive scars due to their illness but these marks become part of your story. Every time you see them they remind you and others what it was like emotionally and physically dealing with the illness.
Send me your stories. Expect to read more on my digital experiences in this Literature & Medicine course.

Tell A Good Story to Your Doctor

A highly recommended read for all patients

I enthusiastically agree with blogger/writer, Deborah Kotz in her recent review of Drs. Leanna Wen and Joshua Kosowsky’s patient empowering book, When Doctors Don’t Listen How To Avoid Misdiagnosis and Unnecessary Tests. Kotz writes, ” I always admire doctors who can write books criticizing their own profession, including any shortcomings they may have as practitioners – in an effort to improve patient care.”

The author physicians recognize that narratives are a vital part of medicine. After all, stories about patients, the experience of caring for them and the hopeful recovery from an illness is always a shared story linking the doctor, the patient and family. I know this from my own heart journey following a difficult and perilous triple bypass a few years ago. For sure, the medical narrative is rapidly changing from the doctor’s story to the patient’s narrative.

Wen and Kosowsky restore our faith in good and effective medicine that can and should be practiced. In so many ways I champion them for their important contribution to the rehumanization of medicine in the same way as patient narratives.

In increasing numbers, the new crop of medical students and youthful white coat practitioners recognize that narrative medicine continues to emerge in response to a arteriosclerotic health care system that places bureaucratic budgetary concerns over the needs of the patient. These two author doctors in their timely book offer understanding that there’s a river of confluent sources spilling over the former dam of evidence-based medicine to a new novel narratology practiced among doctors and patients. A recent Wall Street Journal article reinforces this claim.

” The art of medicine, by contrast, relies on spending time with patients to take an accurate medical history, listening to all their symptoms and concerns and using common sense. During medical training, that art can get lost in the demands of mastering the science.”

Several weeks ago at an American Medical Student Association Humanities Institute I was rewarded by the conversations and stories produced by medical students in a workshop I conducted on the writing of illness narratives.

I want to credit blogger Deborah Kotz, who concisely and cogently offers this summary of the book’s recommendations for patients the next time we are in the doctor’s office or even emergency room. Here’s what the authors recommend.
1. Tell a good story. Start at the beginning and proceed chronologically highlighting the most important parts in five minutes or less if possible. Don’t use medical jargon that you may have heard on a TV show like Gray’s Anatomy. Doctors have specific definitions for terms like “radiating” or “palpitations” that may differ from what you’re actually experiencing. If your doctor tries to interrupt your tale with questions, take a breath and ask to continue before the questioning.
2. Always provide context. What was happening in your life when the symptoms started? If they’ve recently gotten worse, explain what you think may have exacerbated them. This will help your doctor to think beyond the set diagnostic protocol and see you more as an individual.
3. Describe symptoms as specifically as possible during a physical exam. If you feel the pain in only one spot, make that known. Also, let your doctor know whether it’s sharp or dull, intermittent or constant. Pain scores that doctors traditionally use — 1 to 10 with 1 being mild and 10 being akin to the worst torture — can often be misleading since a patient’s definition of a 10 maybe very different from a doctor’s.
4. Get a differential diagnosis. Doctors should have more than one diagnosis in mind initially to make sure that all bases are covered. Usually, a doctor will strongly suspect one particular condition while considering a few others. For example, you might be told you likely have a migraine but that if the pain doesn’t abate at all over the next week, you might need a brain imaging scan to rule out a tumor. “Be wary if your doctor seems to focus on one particular disease to rule out,” write Wen and Kosowsky.
5. Ask for the reasons behind every medical test. Your doctor should be able to explain what the test is looking for, how likely you are to have that diagnosis, and whether your treatment plan will change based on that diagnosis. Every test, even a simple blood draw, has risks, according to Wen, so they should all be done for a reason.

In Writing First Do No Harm

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.

The Art of Medicine in Metaphors

New book just released

All right it’s time for me to engage in shameless self promotion about the successful publication of the new anthology, The Art of Medicine in Metaphors. Three years ago I learned a painful lesson about how a patient bleeds a story. Following a triple bypass, I emerged after nine dark days from a coma after losing all of my blood from a ruptured coronary artery. It’s no wonder that my call to others to learn about their broken health stories met with remarkable responses.

My academic life and illness narrative converged in the fall of 2011, when I assembled a stellar cast of physicians and professors for a symposia aptly entitled The Art of Medicine: Metaphors & Narratives held at the University of South Carolina Sumter campus.

When doctors have less time to spend with patients, one can only ask why do poems and stories matter? There is an increasing consensus among physicians that every patient’s story, whether it be through the standard admission report, the clinical medical chart, or the arc of an entire life history, translates into a valued healing narrative. After all, each one of us approaches the doctor with one question, “My story is broken. Can you fix it?”

Stories and people need one another. Upon my release from the hospital after 21 days in the ICU following heart surgery, I could not help to notice the imperfect blood-red billboard size heart emblazoned on the side of hospital’s sandstone wall. It offers reassurance that no one has a perfect heart; nor a perfect story.

In the course of my recovery and healing, I have repeatedly cited Joan Didion’s poignant testimonial to stories and adopted it as my mantra: “We tell our stories in order to live.” After all, people experience all kinds of heart events in the course of life and our stories live in being told. Telling and listening to stories is the way we make sense of our chaotic and messy lives. My friend and Island Packet columnist, David Lauderdale recently wrote about how poetry helps heal and generously cited the new anthology.

Illness narratives in the form of essays, poems and stories allow physicians and nurses to better understand and to empathize with the patient’s disease experience. For sure, Dr. Rita Charon, a physician with a Ph.D. in English Literature, continues her evangelism by training doctors to graft clinically significant facts from patients’ stories and to use them to make diagnostic and therapeutic decisions.

The arts and humanities, especially literature is widely recognized as a centerpiece in medical education. Stories offer opportunities for learning and a place for reflective self-expression and healing. As a result, an increasing number of academicians, doctors and health professionals understand that the narrative medicine movement draws practitioners- doctors, nurses and volunteers- closer to the stories of illness, to more humanely and effectively bring about healing.

In this anthology, there’s a panoply of experiential and palpable voices like Gilbert Allen’s “After Watching a Play about Cancer, He Learns Why He Hates The theater,” to David Bachman’s “The Autopsy Room” and Debra Daniel’s “What Happens in the Chambers of Our Hearts.” These contributors and so many others reaffirm the restorative power of writing to help forge connections among people who have had surgery, suffered or witnessed illness.

Our anthology includes thematic reflections on death, diagnoses, fears, humor, joy and transformation both physical and spiritual. It was challenging to categorize all of these submissions into tidy classifications. While the noted sociologist, Arthur W. Frank through his pioneering book, The Wounded Storyteller: Body Illness and Ethics offers compelling and common plot lines for an illness narrative: through Restitution, Chaos, and Quest examinations, I have generously used the classifications of Recognition, Tension and Transformation in placing these poems and stories into some orderly configuration, perhaps in doing so to primarily satisfy the requirements of the publisher, Copernicus Healthcare and to assist the reader.

No one suggests or requires physicians, patients or students to write like Anton Chekhov or Williams Carlos Williams, but among the myriad of voices in this collection, they all succeed in telling their story, sharing their brokenness, discovering healing metaphors and at unexpected moments offering grace and renewal.

Send me your story.

Physician Publisher Discovers Writing Helps Bereavement Process

Jacket cover of Dr. John Geyman's new book

It’s a New Year and there are many of us engaged in resolutions and resolve for the many changes and opportunities ahead. I am pleased to announce the publication of the assembled and edited anthology, The Art of Medicine in Metaphors. Rather than engage in shameless self-promotion about my new book, I want to tell you about John Geyman, Professor Emeritus of Family Medicine at the University of Washington, who is my publisher and his imprint Copernicus Healthcare. His life reflects an abiding interest in placing the care into health.

Dr. Geyman understands and lives medical humanities. He has been advocating for decades the view that physicians should not be narrowly defined technical experts, but rather be broadly educated, intellectually alive, socially responsible, and engaged in daily empathy.

His recently published Souls on a Walk An Enduring Love Story Unbroken by Alzeheimer’s reveals his compassion and love for his wife, Gene. They were married for 56 years and the physician poignantly chronicles their life together and his caretaker role for the last 16 years after her diagnosis. For sure, this disease impacts all generations– young and old. According to the Alzeheimer’s Foundation of America, it is one of the top ten leading causes of death in the U.S.

The author and physician, Dr. Geyman reveals how the tasks associated with caregiving are completed lovingly despite how physically demanding and emotionally taxing. For increasing numbers of baby boomers now facing the often daunting responsibilities of becoming caregivers. In fact, more than one in five Americans ages 45 to 64 is a caregiver, typically for a parent.

“Working on this book has been therapeutic for me. It is my own way of searching for meaning in the trajectory of our lives together,” writes Geyman.

For those of us engaged in the field of “Medical humanities” the buzz of this venerable pedigree, begs for more from doctors, nurses and caregivers. Dr. Geyman exhibits through his actions that physicians and in his case, as a husband, accepts his noble, rewarding and at times frustrating job as a caregiver. Maybe it’s time that all of us prepare to learn more about empathy as we handle the challenges and responsibilities just around the corner.

Send me your stories.

Detailing Trauma A Poetic Anatomy

Many 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.

The Heart is a Lonely Hunter

None of us are ever out of the woods. After a successful triple bypass three years ago, I thought my imperfect heart would beat effortlessly and that I would sail into the autumn of my life. My broken story had run its course and with abundant love from family and friends, I was confident that my heart was mended.

At 4:16 a.m. on a Sunday morning several months ago, I awoke and knew instantly that I joined the more than 750,000 Americans who experience a stroke or a recurrent one. After all, it is the third leading cause of death after heart disease and cancer and strikes one out every six people.

For sure, I am one of the lucky survivors who experienced an ischemic stroke, I prefer to say it was a brain attack event. The doctors tell me that a cerebral embolism refers to a blood clot that forms at another location in the circulatory system, usually the heart and large arteries of the upper chest and neck.

Today my nimble and strong fingers are banging away on my MacBook Pro. Each day I acknowledge how grateful I am that I have fully regained the use of my right arm and speech. My neurologist quietly looked into my face after reading the MRI and Cat scans in her sterile and unpersonalized VA office, “James, you are fortunate that there are only a few deficits apparent in your brain.” Well, heck I could have told her that was a longstanding issue and several women would happily render testimony to this condition.

So the physicians have weighed in and this “brain attack” or ischemic stroke occurred when a blood vessel that supplies blood to the brain was blocked by a blood clot. The neurologist and cardiologist agree that clot broke off from the heart, traveled to the brain and caused this embolism.

Of course, the daily regimen of Warfarin, coupled with Lisinopril, Metoprolol, and other pharmaceutical interventions appear to be essential to ameliorate my unquiet mind. Each night, the anxiety wells up from some dark place and washes over me like a tsunami. So, a half tab of Tradazone helps chase away the stroke demons for awhile.

Warfarin prevents blood clots from forming or growing larger in your blood and blood vessels. As a result, I must monitor my INR on a weekly basis. The goal of this anticoagulant therapy with Warfarin is to administer the lowest effective dose of the drug to maintain the target international normalized ratio (INR).

Now if the name is not frightening enough, read the fine print accompanying this apparent life saving drug: Warfarin may cause severe bleeding that can be life-threatening and even cause death. Tell your doctor if you have or have ever had a blood or bleeding disorder; bleeding problems, especially in your stomach or your esophagus (tube from the throat to the stomach), intestines, urinary tract or bladder, or lungs; high blood pressure; heart attack; angina (chest pain or pressure); heart disease; pericarditis (swelling of the lining (sac) around the heart); endocarditis (infection of one or more heart valves); a stroke or ministroke; aneurysm (weakening or tearing of an artery or vein) and more.

Each week I am fastidious about not eating my leafy greens. Vitamin K and Warfarin work against each other. Vitamin K is a necessary nutrient in the production of blood clots. The liver uses vitamin K to make proteins, which are responsible for the clotting process. As an anticoagulant responsible for stopping blood clots, Coumadin (Warfarin) works against the body’s natural clotting ability by slowing production of vitamin K and clotting proteins in the liver. My prescription is taken in dosages specific to how much clotting protein is in the blood. So I have out of necessity eliminated any green leafy vegetables, such as broccoli, spinach, cabbage, brussels sprouts (that was no major loss) and collard greens. Now, that I am a South Carolinian, no collards translates as an insult to Southern hospitality.

With no leafy greens allowed in my post-stroke diet, I have quickly become an avid forager for behind the scenes recommended tomatoes in all the local markets. This includes,beefsteak, plum, heirloom, cherry, grape and even Campari tomatoes. In fact, I must admit that instead of discussing the the bouquets and flavors of Pinot Noirs, once described in a Vanity Fair article as “the most romantic of wines,” I now artfully evangelize about the various varieties of tomatoes.

Recent articles, journals and even the BBC have proclaimed that “tomatoes are ‘stroke preventers.” They are the perfect antioxidants and that helps prevent strokes. So, I encourage all my family and friends to get their daily dose of lycopene.

At the end of this month, it’s World Stroke Day. The statistics are clear and present that one in six people will experience a stroke in their lifetime. Additionally, younger people are getting strokes at a faster rate, and people under age 55 make up a greater percentage of all strokes, according to a study in the journal Neurology. I encourage my friends and family to support their local hospitals and regional medical centers on this awareness day scheduled for October 29. Sign up now and join the campaign.

Each day, I get stronger and watch my footprints disappear at Surfside Beach. The Atlantic offers a sweet balm for the body and soul. The exercise helps my blood pressure but who can deny that the waves and the salt water does not heal. It’s mid October and I am chest deep in the ocean and the young local Coastal Carolina University surfers are chasing the waves before the sun sets.
Send me your story. It does matter.

NY MED Chronicles Stories in Hospital

The new mini-series, “NY Med”, the eight-part television series from ABC News, chronicles the 24/7 drama of NewYork-Presbyterian Hospital in New York City. The documentary from the award winning producers of “Hopkins” and “Boston Med,” appears on ABC, and takes a raw and intimate look at life inside the most famous hospital in America’s largest city. Award winning documentarian, Terrence Wrong, adroitly turns his lens to close-ups of the staff and patients.

While there’s an increasing appetite, if not obsessive pop culture focus on reality TV shows, this docu-production, offers hope that cameras can reveal something akin to medical humanity. The physician poet, Dr. Jack Coulehan best captures the unwieldy explanation of this term when he writes.” Medical humanities relates to, but is not identical with, the art of medicine, for which nowadays we often use the word “doctoring.” Doctoring requires communication skills, empathy, self awareness, judgment, professionalism, and mastering the social and cultural context of personhood, illness and health care.”

In many ways, this TV series reinforces the best of Creative Nonfiction and Medical Humanities. Wrong, a consummate story teller, abides to the truth of the hospital setting and observes the intersection of the lives of patients and caregivers. His camera seemingly moves deftly between heart transplants and conversations among patients and their doctors. In effective storytelling, the author or in this case, the filmmaker, spends little time telling and more time showing viewers the episodic graphic stages of daily hospital life.

“NewYork-Presbyterian Hospital relies on extraordinary and dedicated physicians, nurses, and staff to deliver the best in care and caring. Our patients and their families come from near and far to find the help they need to face the most challenging and complex medical problems, and we are focused on providing them with the highest quality and most compassionate care,” says Dr. Steven J. Corwin, CEO of NewYork-Presbyterian Hospital.

Sometimes, I have often wished that a family member had been rolling their videocamera during my time in the ICU and the various narratives that unfolded among family members as they discussed quietly and maybe not so quietly who might make the decision to take me off the ventilator.

In this compelling mini-series, ABC cameras had unprecedented access to the day-to-day dramas unfolding at Columbia and Weill Cornell Medical Centers, the crown jewels of the prestigious NewYork-Presbyterian Hospital, documenting the medical miracles that occur in these world-class facilities.

“NY Med” follows the real-life surgeons, residents, nurses and hospital staff who try to change the trajectory of lives by relying on sheer medical brilliance and a healthy dose of old fashioned good luck. The series, which runs from July 10 – August 28, features the hospital’s top doctors, among them world-class heart surgeon and television personality, Dr. Mehmet Oz and the dedicated nurses who are the backbone of any hospital.

According to a recent feature in The New York Times, “The cases in “NY Med” range from the profound, involving appalling tumors or urgent transplants, to those that seem lifted from episodes of “Grey’s Anatomy”: a man whose midsection is full of nuts, bolts and other hardware; a Christian Scientist who returns from his bachelor party with measles; a Cialis-induced erection that needs draining, like some medieval bloodletting. One stunning shot in Episode 8, held for just a second, shows a woman’s empty midsection from which both a large sarcoma and her perfectly healthy liver have been removed.”

From my perspective: the stories chronicled in “NY Med” are gripping, honest and all too real especially for someone who came out of a coma after 10 days.

Send me yours.

All Heart Matters

The Narrative Networks