Category Archives: illness narratives

Is There a Doctor in the House?

DOC(1)Some of my friends and family members think that I have become a new convert to the dark side. This disturbing assessment is attributed to my fascination with the plethora of the newest iPhone health devices. I plead inter spem et metum or take up my daily residence somewhere between hope and fear on this subject. That is, I am hopeful about some of the latest technology that helps us monitor the heart, while I am fearful that our focus on the technology might contribute more to the dehumanization of health.

As a recovering heart patient and educator, I want to take the high road here and share my recent discovery of Professor Todd Savitt’s edited book, Medical Readers’ Theater: A Guide and Scripts, published by the University of Iowa Press.

The paperback comprised of fourteen theater scripts is adapted from short stories about physicians and patients. All of the stories (scripts) address ethical and social issues in medical care and the conflicting aspects of aging and chronic disease. While the text or scripts may be intended for medical students, I urge my colleagues in the performing arts, and humanities to assign the textbook. For that matter, here at Coastal Carolina University, where I currently teach, it may be a welcome addition for our expanding Health Promotion department. What better way to offer some instruction in empathy.

The Readers’ Theater Program began in 1988 with a grant from the North Carolina Humanities Council. Three medical schools in the state sent students to perform the stories before community groups. The program continues at East Carolina University, and thanks to this book, it can be inaugurated at other institutions.

Savitt, a PhD in the Department of Bioethics and Interdisciplinary Studies at Brody School of Medicine, gives more than thoughtful instructions on how the material is to be performed—including brief stage directions and suggestions on what performers should wear—and he offers tips on finding audiences by reaching out to existing organizations and community groups.

The job of the discussion leader is carefully detailed because the purpose of the performance is not to provide entertainment, but to elicit an exchange of ideas. The program, he explains, “is to provide a forum where citizens can consider and examine their own and others’ views on issues of common concern in the medical world” (p. xix). It is fully anticipated that attendees will be “sharing personal and sometimes painful experiences and debating points of contention” (p. xix).

The reader is not only an essential for medical students but for all students engaged in the healthcare field. I encourage all medical schools to take the lead and dedicate one afternoon to a Medical Readers Theater performance with faculty, students and patients all participating.

The stories found in the compelling anthology include a range of themes about physicians and patients, like William Carlos Williams’s “The Girl With a Pimply Face,” a story that I have previously taught in one of my past Literature and Medicine classes. An excellent summary of this story is found on this blog, Medical Visions in Literature Discussion.

For my purposes, I intend to rally some academic departments to conduct a Medical Readers performance this fall. Anything that teachers can do to bring empathy into the classroom has my vote and full participation. After all, empathy is not just about hugs and pats on the back for a job well done. It’s about developing a skill that can make young people more mindful and productive at home, on campus and eventually in the workplace since we need more cooperation and compassion each and every day.

Send me your story.

The front line of good medicine often starts at home

Lange, Jill 02x (ERAS)

Medical students place themselves on the front lines of death and disease as part of their clinical training. Earlier in the year, I was invited by the American Medical Student Association’s Humanities Institute to participate in a writing workshop for medical students. I asked these students to write an illness narrative either as a patient or as someone who has witnessed illness. Jill Lange, a first year resident in the Department of Obstetrics and Gynecology at the University of Colorado, wrote this personal essay about her mother.

Those of us engaged in the humanities and pioneers in the field of Narrative Medicine like Dr. Rita Charon, Dr. Robert Coles and Dr. Johanna Shapiro, attempt through literature to deepen students understanding and empathy for the patient’s experience of illness. I cannot say for sure that empathy is on the decline among the new generation. However, the Unte Reader revealed in a study conducted by University of Michigan Psychologist Sara Konrath that empathy levels among college students plummeted between 1979- 2009. This is certainly not the case in Jill Lange’s story about her mother final days of her life. Send me yours. 

Holding on, Letting go

“Hi, Jilly. It’s time for you to come home,” a weaker, raspier version of my mom’s voice said. “What do you mean? Finals are next week, can I finish up my semester and come back after?” “No, you need to come home now.” My heart felt like a hefty anchor. I knew she meant it. But how could this be so serious that plus or minus 7 days mattered? The next day, I was on my way home.

I couldn’t control the wildfire of metastases roaring through my mother. I couldn’t make the cells stop dividing, so I undermined their power, I didn’t give them the validation they needed to control us, but I held on. I gripped. “I’ve heard of people going to a healer in Brazil, he completely cures his stage IV cancer patients. We could go down there together.” I held on tight to anything—a dream, a few hopeful words from a doctor in the midst of the grimness, 1 good day after 6 bad ones, a belief, and a need for my mom to get better. The ambulance came 3 times in one week, I thought every time she would come back from the hospital treated, stronger and better than before. None of this was real.

Reality was ugly. My mother was half her natural weight, a skeleton loosely wrapped in thin skin, her face was puffy with asymmetric expressions from paralysis of facial nerves, masking the beauty that once resided there. She was paralyzed from the chest down, helpless, immobile and unable to tend to herself. Her elegant long fingers had lost their dexterity and even a spoon with a big clump of clay to assist her grip was clumsily cradled. Her mind was fuzzy, she was childish and drowsy and not the fiercely independent, brilliant powerhouse mommy of mine. She didn’t look like my mom. She couldn’t do the things my mom could always do. It wasn’t the reality I wanted.

Many times she tried to tell me, “Jill, I’m really sick…” She tried and tried to give me warning shots, but I let them fly by. “You’re going to get better.” I somehow believed that the pain, paralysis, and petechiae could be reversed. Miracles do happen.

But in holding on, I let go of the ability to be present in reality. I asked her to be stronger, I told her she could get through this. My mommy had to get better. I needed her to see me graduate, walk me down the aisle, and meet my future babies. I was holding on so tightly I can still feel the physical, energetic upward yank in my chest, running up through my throat.

Eventually, my fantastic denial could no longer be reconciled with reality. She was declining so rapidly, she was so sleepy, her pain was ravishing, she didn’t make much sense. She sunk, and sunk into deeper sleep. Just before she started sleeping full-time, I heard clear mumbles: “you are the most special, wonderful gift I ever imagined. You are everything to me.” I finally accepted she was going, and now I was going to let her.

So I held on. We moved her to the bed, where I could lay beside her. Someone had told me that when their grandma died, in that very moment, the room sparkled. I didn’t want to miss the sparkles, so I never left her side. The exception was my 20-feet sprint to the bathroom; not even taking the time to wash my hands. Now, that I had accepted the inevitability of death, I was holding on so tightly to being present for the sparkles. I told her, “Mom, it’s OK, you can let go now.” But she wasn’t listening, so I told her many times more.

But my mama was holding on too. Though she was in a state of indefinite, deep sleep, breathing sometimes erratically, and sometimes with great pauses, existing in this corroded physical shell, she held on. The doctors said 3 days ago that once people got like this they usually die in a day, but now it was 3. I knew it wasn’t a miracle, I knew she was holding on to the impossible just like me. She didn’t want to show me the sparkles; she couldn’t let go with her life-force laying next to her.

We held on to each other so fiercely through our lives together. We had to hold on, it was our survival skill. But now, to stop the suffering and start the living, we had to let go, and if she wasn’t going to, I had to allow her to release herself. So after three days of burrowing in bed, lying next to her dying, spent body, waiting for sparkles, I finally left the room. I went outside, in the same pajamas I had been wearing for 3 days, and I let the summer afternoon air coat my skin and enter my nostrils.

 And minutes later she was gone. She held on until the moment I left because my strong, brilliant mama couldn’t dare let go in front of me. I didn’t see any sparkles, but when they came and told me she was gone, the yank through my chest and throat stopped pulling, a summer’s warmth rushed through me, and I smiled. The tug-of-war had ended. Both of us were free.


Getting back on the bicycle


Earlier in the year I was invited to participate as a writing workshop facilitator for students who signed up for the American Medical Student Association’s Humanities Institute. I asked the registered participants to write an illness narrative. Minda Aguhob, a research consultant at Woodhull Hospital in New York, sent me this story about her recovery from a bicycle accident that resulted in a traumatic brain injury. Today, she is back on her bike and riding through the breathtaking views of Central Park.

Here’s her story. Please send me yours.

The first two weeks are a vulnerable time

                                                     by Minda Aguhob

    Douglas, one of my riding partners, was frozen when he saw the blood. Edwin had to lift my limp body out of the ditch by himself. I had bounced to the right of the road with my bike; then to the left, banging my head on a large drain pipe in front of a mansion in Bedford, NY. We had been riding to the train station, in order to skip the second half of an 80-mile training ride from NYC.

    Edwin had passed me on his bike, and saw I was not moving, not breathing. His assessment as an experienced NYC paramedic: No muscle tone, no teeth or clavicle broken; modified jaw thrust technique got me breathing. I gasped my first breath and began “posturing,” suggesting brain stem injury. But I didn’t need CPR; when the ambulance arrived in 10 minutes, I was fighting and combative. I had narrowly missed a metal spike coming straight out of the ground.

    I woke up in the hospital, suddenly aware that I was arguing with Edwin about whether I could urinate at the moment.”Hey, you have a catheter in there. You can go!” I replied, “I don’t know about that.”

    I was aware of Edwin and others in the room, perhaps family, through the fog of sudden consciousness. Thinking back, I never questioned why I was in a hospital bed, arguing with Edwin, a fellow cyclist who I barely knew at that point. Maybe it was the stories I heard by family and doctors, told and picked up on through my unconscious state. Though I had total Amnesia about the actual cycling accident that led me there, I just knew.

    Finally, I went home, recovering from subarachnoid hemorrhage, to a new kind of hell. My mother, angry and blaming, was as intensely expressive as the atomic bomb at Hiroshima.

    On day seven, I crawled out of the apartment, assisted by someone who I don’t remember, to a cab and thankfully remembered my own apartment address. Friends came from other boroughs and other states to help, people from childhood and college, and brand new friends, who I never knew would be there for me. I remember suddenly finding everything funny, like being drunk and high at the same time, walking down the sidewalk with childhood friend Amber.

    Still, out of frustration, I created this checklist:

·       Have meal partners.

·       Have someone arrange and help w/your follow up doctor appts.

·       Expect recovery to take twice as long as you think.

·       Educate others on my injuries, constantly.

·       Expect people to behave inappropriately and bring those things into therapy.

·       Have a therapist and reliable people in your life.

·       Find other interests, besides sports and career, to enjoy in hard times.

·       Let your needs be known repeatedly; multimodally.

    Meanwhile my apartment, a refuge, was also a trap each morning; I replayed obsessively the events leading to my resident physician boyfriend to break up with me a week after the accident.

    I practiced walking and made it downstairs with a cane after a week, then cried when I could hobble to Central Park and the local café after a month, even with pedestrians bumping into me and buses ignoring my disabled state. While sitting on the 7th Ave/ Columbus Circle island, I dropped my phone and didn’t notice. One of the sidewalk peddlers saw and picked it up for me.

    “Affection without obligation is the basis of true friendship.” My dear friend Ilaria declared, as she held doors open and philosophized with me. I remember thinking those 98 degree sunny Saturdays were worse than normal days, when I more intensely preferred death to disappointment by people who I thought loved me.

    I stopped dreaming at night, literally, for months. But one of the first dreams I remembered was my patting my dog’s head and her giving me her paw. I woke with such longing for her company and love.

    I noted the first day I could run around and schedule things like I used to, despite knowing there were consequences – neglect of my true self. I now easily loved my mentally ill sibling and his stories of hospitalization, and listened to my constantly injured colleague with lupus.

    I called it my new sweet spot in New York. There’s the insight that we are all victims. I never knew that more than half the pain of being a patient is first and always about the pain in your relationships.

    I cried when I was able to turn my head. Today was the first day I didn’t have to fight too hard to break out of “zone outs” where I stare into space for minutes at a time. My job is resting and healing now. I will find something fun to do each day that can do alone! The beach. Is that possible? Now, I will stop to just live. I’ll even stop my application to med school for that.

   Can I love being in a relationship with me — the same “me” that once tortured and threatened me?

    A friend, a stroke survivor, told me life can actually be better after the accident and for the first time, I can see how.





Compassionate M.D. Contributes to India’s Medical Humanities Expansion

Medical humanist Dr. Satendra SinghAlthough India’s image has suffered because of a spate of recent well-publicized attacks on women, to the recent claims and financial settlement of rampant fraud and drug safety issues at Ranbaxy, India’s largest pharmaceutical company, my recent e-mail communication with Dr. Satendra Singh, a medical doctor and Assistant Professor of Physiology, located at the Medical Humanities Group at the University College of Medical Sciences in Delhi, offers reassurance about the compassionate India that I know. Like other physician poets, Dr. Singh believes in the power of narrative and poetry in the healing of patients and the physician.

Dr. Singh overcame childhood adversity since he was first diagnosed with polio as an infant.  I am reminded of what Arthur Frank writes in his compelling book, Letting Stories Breathe, He claims, “Stories live in being told. I find it significant that (Joan) Didion, on whose choice of words it is fair to place considerable weight, does not say that we make up stories in order to live .The stories are somehow already there, waiting to be told. “  Singh has stated in an interview, “ I was nine months old when I first contracted polio in my native village at Rewari, Haryana. I was too little to understand what happened at that time but it was the start of a unique journey. When I look back in hindsight, it was a journey of pain, and hope, challenges and opportunities, motivation and destiny.”

Singh’s poem “Infinite Ability” underscores the physician’s recognition to understand himself, and his persistence to realize his goals as a doctor and educator. Along with Professor Upreet Dhaliwal, current Dean of the Faculty of Medical Sciences, who is also a blogger and poet, other engaged colleagues, and medical students, UCMS through creative programs like The Theater of the Oppressed, Blind with Camera and street theater is helping to restore the human elements of medicine in India. Professor Navjeevan Singh is the recognized founder of MHG. He currently serves as the tireless coordinator for the Medical Education Unit and initiated the college’s Mentoring Program for undergraduates.

Additionally, the Medical Humanities Foundation of India reinforces the objective to make medical care more humane.  Professor Ravi Ramakantan, a radiologist from Mumbai and the past dean of the prestigious KEM hospital, directs the foundation in its mission to broaden the narrative medicine base among all medical colleges.

Dr. Singh, an indefatigable physician, continues to generate interest at the medical college with the expansion of the Medical Humanities Interest Group. He has formed a special interest group appropriately identified as Infinite Ability, an interdisciplinary platform to explore disability through the creative arts. While all medical schools are under increasing pressure to fit the new initiative of medical humanities into a core curriculum, it is most encouraging that UCMS understands as Arthur Frank suggests, “ that illness constitutes a biographical disruption in someone’s life.” So how fortunate for India’s more than 345 medical schools that medical humanists like Dr. Singh and Professor Dhaliwal, ardently practice in and outside the classroom, that this disruption requires repair in the form of a narrative (poetic) reconstruction.

 Dr. Avinash Supe, Head of the Department of Surgical Gastroenterology at Seth GS Medical College and KEM Hospital in Mumbai has also weighed in on the importance for all of India’s medical colleges to support a medical humanities curriculum. He writes, “Richa Gupta and others at the University College of Medical Sciences, formed an MH group in 2010, and have shared their experiences.”

V. S. Sunder, a multiple sclerosis survivor and mathematics professor, in his blog posting, “An inveterate soldier,” identifies and praises Dr. Singh for his many successes chalked up for India’s disabled population and for his prodigious energy and talents in practicing the art of medicine.

Infinite Ability by Dr. Satendra Singh

The uneasy fumble, the continued struggle and the visible cripple

Became part of his life since inception

The orthopedic surgeon diagnosed PPRP 70%

The proud parents interrupted, it’s motivation 100%

The weakened quadriceps were encircled by iron callipers

And two crutches were provided as limp stabilizers

Hydrotherapy, electrotherapy, surgical therapy

Everything was tried without reluctance

No defiance, this was sheer persistence

The tortoise began his education amongst hares

The damaged motor neurons were equally compensated with able mentors

Partial cerebral hypertrophy stabilized the atrophied limb

And the affective domain overpowered the psychomotor defect

Stairs were his biggest fear


Arts Help Healing Hearts

For nearly four years I have been writing about how the arts, especially writing, helps heal wounds and trauma. Dr. Jeremy Nobel, MD and his Foundation for Art & Healing understands this relationship very well. Since 2003, his small foundation has been examining how the creative arts is related to healing and recovery.

All of us are painfully aware that heart disease is the leading cause of morbidity and mortality in the developed world. Dr. Nobel believes that “while enormous medical progress has been made in recent decades, a growing understanding of the intricate relationship between cardiovascular and the human experience represents an opportunity to reduce the prevalence of heart disease and the suffering it causes even further.”

His Arts and the Heart Campaign, orchestrated and led by the Foundation for Art & Healing, is a multi-year initiative. His stellar group of sustainable roundtable participants included such notables as the late Dr. Robert N. Butler, Pulitizer prize author of The Longevity Revolution: The Benefits and Challenges of Living a Long Life and Edward Hirsch, poet and MacArthur Award winner and president of the Guggenheim Memorial Foundation. These individuals and others on the distinguished panel reinforce that a “healing-oriented creative engagement has the potential of humanizing the doctor-patient relationship and by tapping into the deeper springs of patient motivation and healing…”

I understand this connection very well and have been documenting this important relationship since the recovery from my own triple bypass. There are scores of bloggers, artists, poets and increasing numbers of e-patients who provide ample testimony to the benefits derived from an arts intervention. This is particularly prevalent among the more than 60 million baby boomers, who are now living longer and now confront ever and present health challenges.

In the foundation’s own research they discovered that there is a clear correlation between the study of heart patients’ drawings of the state of their hearts and that this showed that patient perception is as good a prognosis of clinical outcomes three months later as traditional medical measures.”

Today is my birthday and an approaching anniversary of my own heart journey. I am so grateful to the direct medical intervention that saved my life after I bled out from a ruptured artery but I also credit the power of the arts, namely, writing this blog as powerful medicine. I want to echo and shout out Poet Pablo Neruda words, “ To feel the love of people whom we love is a fire that feeds our life.”

I am and remain grateful for those people and there are many in my life, who have continued to keep those flames alive.





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

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.