Story Bridges The Medical Experience

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Stories are found everywhere. They predominate our lives. They most certainly give us courage. MUSC’s Center for Writing Excellence Narrative Bridge: Connecting through the Health Humanities program held in beautiful Charleston reaffirms the power of story.

Dr. Sayantani DasGupta, author, academic and acolyte of the celebrated Dr. Rita Charon and her Columbia University Narrative Medicine Program noted in her keynote luncheon address, “ I teach people to listen and it is an act of profound humanity.” And so we listened and told our stories for two days.

While numerous medical schools have successfully incorporated arts, literature and humanities into the curricula, it was reassuring that the Medical University of South Carolina  (MUSC) has joined other medical institutions in hosting Narrative Health Humanities programs.

In workshops entitled, “Turning toward Suffering Using Narrative and Contemplative Skills,” led by Dr. Joanie Webster and Hiram College Professor Michael Blackie, participants learned mindfulness practices to reduce stress. In Mahala Yates Stripling’s “Follow Your Heart: Medical Readers’ Theater Workshop,” we were mesmerized by the professional and poignant reading of Dr. Richard Selzer’s story about Hannah, the widow of a man whose organs were transplanted into several recipients.  Thanks to the following participants who gave us their best thespian voices:  Mansi Shah, Muriel Murch, Shelly Wall, Sandra Weems, Sara Baker and Lori-Linell C. Hollins.

It is difficult to single out one of the conference’s highlights but I must. The session, “ Nurses: Writing from the Heart” moved me to tears. Of course, following my own triple bypass a few years ago, the falling of a leaf now brings on a flood of emotion.

Cortney Davis, Judy Schaefer, Jeanne Bryner, Muriel Murch and Veneta Masson, have know one another for decades and were responsible for the publication of Between the Heartbeats: Poetry and Prose by Nurses. These poets displayed much courage, grace and talent in their emotional reading. It was indeed a historic moment since they continue to offer enthusiastic encouragement to other nurses to write their stories. Their stories and poems leap from the pages to form a constellation of empathy.

My own life was saved by one ICU nurse, who witnessed my repaired and ruptured artery spurt from my drainage tubes following a triple bypass.

Medical sociologist, Dr. Arthur Frank, a heart attack and cancer survivor, passionately writes in his pioneering work, “The Wounded Storyteller” that “illness becomes a circulation of stories…and the story that trumps all others in the modern period is the medical narrative.” At our conference, so many diverse voices gave resounding confirmation to Frank’s declaration.

Since the field of literature and medicine was introduced to U.S. medical schools in the early 1970s to humanize the science-based curriculum, increasing numbers of physicians, nurses, patients and healthcare providers are now ardent evangelists for reading literature and writing the narrative arc of a patient’s story.

In preparation for this MUSC program, I recently led an illness writing webinar for the American Medical Student Association supported Medical Humanities Scholars Program. The 2014 theme for these future doctors is “The Physician as Storyteller.”  Here’s what a few med students shared with me:

Fourth year Emory medical student, Anthony Lee Lugar, revealed that he wants to perfect his craft of writing narratives to “share feelings and coping strategies with patients and fellow medical professionals.” He believes that too few practitioners adopt this method and as result, patient stories are lost or worst, become mere numeric data and observations.

Lorenzo R. Sewanan, a second year MD-PhD student at Yale University School of Medicine and the coordinator of the AMSA Medical Humanities Scholars Program, supports the claim that every patient has a story and the medical encounter often brings out emotional truth if the doctor only takes time to listen.

The writing efforts of these medical students accentuate the value of MUSC’s narrative medicine program. For that matter, I was also impressed that Master of Science students like Rebecca Tsevant and Helen Harley from Columbia’s Program in Narrative Medicine, they professionally guided us through literature and reflective writing exercises. Cheers to them and other students who are immersed in reading and writing about illness and care.

After the conference, I received a poignant e-mail from one of the participants, Sandy, who wrote. “ After partaking in the beautiful readings you shared in your session (Sara Baker and I read from the anthology, The Art of Medicine in Metaphors) and, more importantly, hearing your own illness experiences, I was both buoyed by and awash in emotion so intense that it stopped me speaking for a full half hour. I will ever recall so many profound moments from this conference, but none more personally revelatory and moving than that flawless, hushed, intimate gathering—the perfect end-note for that soul-soaring three-day symphony.”

Let’s hope that we all see one another again at the next scheduled storied MUSC program.

Mr. Borton teaches in the English Department at Coastal Carolina University, blogs at allheartmatters.com and edited the anthology, The Art of Medicine in Metaphors. Contact him at jborton@coastal.edu.all need these bridges of communication.

 

Writing Workshops for Illness Narratives Proliferate

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There’s no shortage of workshops offered to patients, physicians, nurses and students. From Stonybrook’s Astonished Harvest at the Center for Medical Humanities to Penn State Hershey Physician Writers Group and John Fox’s Institute for Poetic Medicine, there’s an ever widening net of dedicated individuals helping individuals become more self aware about the nature of illness.

 

 A few weeks ago I was invited to lead a writing workshop sponsored by Communications, Language, Literature and Religion at Coker College, located in charming Hartsville, South Carolina. It was a First Thursday night and Main Street was alive already with the sounds and spirit of the approaching holidays. The program culminated with a book signing at Burry Bookstore for the published anthology, The Art of Medicine in Metaphors.

Earlier in the afternoon, at the college’s new library and the state-of-art, Daniels Boardroom , I facilitated a workshop on writing illness narratives. Present were students and several faculty members, including Professor Cathy Cuppett, a Spanish professor and poet. We entertained ideas about what constitutes an illness story and than the attendees shared their work. Of course, I am always surprised at the depth of emotional knowledge from millennials, who seem to be infused with a much greater awareness of empathy and display it in their reflective essays and stories.

One workshop participant, Taylor Rauch wrote graphically and poignantly abut her near fatal car accident that left her without a spleen, an appendix and on a ventilator for almost two weeks. She writes, ” I know my tragic accident just as I told it, because I am lucky enough not to have any memory of it, although I do still wear the scars.”

Cathy Cuppett wrote this poem in progress in response to an in- class writing prompt about how we wear or hide our scars.

We all have scars that never heal.

As such, they force us to reveal

What, if we could, we would conceal.

Recoiling at this mark of Cain,

We paint facades of flawless plane

Made up with power, strength and gain.

What fools, indeed, we mortals be

As blinded by our vanity,

Our common truth we cannot see:

These signs are not a blight that mars,

The leprous souls from others bars.

We are united by our scars.”

 

 

 

 

 

 

 

 

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.

Digital medicine changes conversation between patient and physician

Heart Monitor front iPhone 5It’s a Brave New World in iMedicine and with greater access to individualized health information—whether that is through a formal electronic medical record, a patient generated health record or a quick instant-messaging session with a physician—the traditional roles and communication channels between doctors and patients are undergoing a swift transition. As a former heart patient, one who experienced a triple bypass and subsequent stroke, I understand what it means to monitor my heart. Thanks to AliveCor’s iPhone enabled heart monitor and my newly purchased smartphone, I am able to record any potential heart arrhythmia problems, and be remotely monitored by my doctor to determine if the prescribed therapy is working.

With more baby boomers spending time and money in a doctor’s office, more of us are morphing into digitally empowered people taking control of our medical information. No, I am not suggesting that a simple Google search provides any of us with a proper diagnosis. However, the apps for health related technology expand exponentially daily. In the Apple App Store, the “Medical” section currently holds more than 1,000 applications.

Some observers suggest that this access to patient information and self-monitoring may prove helpful to increased communication with doctors. According to Scientific American’s Katherine Harmon, “ another way to help reduce the swelling workload for doctors is to encourage participatory medicine, says Dave deBronkart, a former cancer patient and now patient advocate. In such a partnership, patients would stop expecting doctors to “know everything and do everything,” he says. Rather, they would be more actively involved in working with doctors as partners in their care by being more aware of their own health histories, conditions and risk factors.”

While there is a sea change taking place in the communication patterns among patients and physicians, there are ardent champions of digital medicine like Jeff Goldsmith, a healthcare futurist, who in his 2003 book, Digital Medicine: Implications for Healthcare Leaders, and Eric Topol MD in The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Healthcare, both offer patients most useful definitions of digital medicine.

These two techno-savvy evangelists proclaim that the convergence of computer-assisted molecular and cellular diagnosis, computerized clinical decision support and artificial intelligence, telemedicine, wireless and mobile computing applications, and broadband Internet connectivity all form the backbone of digital medicine.

Dr. Topol points out that wireless medical devices make medical tests more convenient and save patients and health insurers a bundle of money.

In the case of AliveCor’s iPhone-enabled heart monitor, I am confident that the rhythm strips stored in the smartphone and safely secured in the cloud for future analysis offers me and my doctor more tools to better assess my heart. The device works in this manner: it snaps easily onto the back of the iPhone 5. The Heart Monitor is effortlessly activated by simply launching the corresponding AliveECG app on the iPhone. The app senses skin contact on the sensors and when an acceptable connection is made it counts down to begin the ECG recording. I gently held the device or rather the EKG case in a relaxed state, and pressed fingers from each hand to each of the two appropriate electrodes on the device. The ECG data synchs between the app and your online hub so that the data is consistent. I also learned that through this device I can quickly obtain an ECG by placing it directly on my chest.

All this seems to reinforce the salient truth that more and more physicians are now prescribing more mobile applications than medications. That’s may prove to be a godsend for all of us.

In a past interview with NBC, digital medicine’s guru, Dr. Topol declared. “These days I’m actually prescribing a lot more apps than medications. You can take it [smartphone] home and make it a lab-on-a-chip. You can do blood tests, saliva tests, urine tests, all kinds of things—sweat tests—through your phone. This is a powerful device,” he added, holding up his iPhone.

Blogger, Dr. Kevin Pho, wants physicians to be mindful of the legal risks of prescribing AliveCor ECG. He writes. “While this sounds nice, how, exactly, does one become a prescribed patient? Once a doctor prescribes such a device, what are his responsibilities? Does this obligate the physician to 24/7/365 availability for EKG interpretations? How are HIPAA-compliant tracings sent between doctor and patient? How are the tracings and medical care documented in the (electronic) medical record? What are the legal risks to the doctor if the patient transmits OTHER patient’s EKG’s to OTHER people, non-securely?”

While these may involve more thorny and complex issues, I choose to take the high ground on the matter.

For now, I am thrilled to have my iPhone and heart monitor access. With more mobile delivered health apps coming on the market each day, digital medical devices are changing the delivery of healthcare. Never mind that it may also set in motion more of a consumer driven patient response to these latest healthcare techno-devices. These apps offer the belief that we are in control of our illness and our future. Let’s see what happens next. Send me your story about the use of your digital heart device.

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

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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

 

Nonprofit Watsi Funds Third-World Healthcare

Bageshwori’s heart repaired thanks to Watsi

Idealism is alive and well among young people, especially for Chase Adam, a former Peace Corps volunteer in Costa Rica. His Watsi nonprofit aims high and wide to help hardscrabble and sick lives worldwide by funding medical attention with small grassroots combined donations.

While traveling on a bus in Costa Rica and passing through a small town called Watsi, Chase witnessed a mother soliciting donations for her son’s medical treatment. Of course, many of us who have traveled in Cambodia and in the Philippines have observed such common sights and remain skeptical and guarded with our wallets. I have only recently learned about Watsi and Chase’s transparent and unselfish acts, along with co-founder, Jesse Cooke and Grace Garey.

In an interview with NBC, Chase captured the central theme of his medical crowdsourcing platform. “ I’m really big on focusing on individual stories and we don’t want to have this huge marketplace of profiles.”

Perhaps in the near future, Watsi may expand on the patients profiles and encourage more stories from both the doctors and patients. After all, health and illness in a connected world is about sharing experiences. Story matters and I do think more donors may be inspired to contribute if there are these perspectives shared on their website.

 I was drawn to their very first profile of a 12 year-old Nepalese girl, Bageshwori, who underwent successful heart surgery for a mitral valve replacement for rheumatic heart disease. According to Watsi, she was treated in Kathmandu and her medical care expense was $1,125 and was funded by 24 donors from around the world.

Located in San Francisco, the nonprofit’s crowd funding model gives credit to Kickstarter and Indiegogo. For sure, Watsi’s goal is to match people in poor nations who are in need of medical care but cannot afford it with donors who pay for their care. All of the donors’funds go to the care of the patients. In fairness of making a full disclaimer, I have donated $20.00 to Watsi as of this posting.

Blogger, Jeff Kaufman offers an incisive breakout of Watsi’s non-profit operating model.

*The patient is diagnosed and their profile is submitted to Watsi.

* Watsi confirms that the profile meets our criteria, notifies the Medical Partner that it has been accepted, posts it online, and donors fund it.

*The Medical Partner provides care to the patient as necessary, operating under the guarantee that Watsi will reimburse them for the cost of care.

*The Medical Partner submits a treatment update to Watsi, verifying that the treatment has been provided.

*Watsi transfers funds to the Medical Partner as soon as the patient’s profile is fully funded.

Watsi is now working with 13 organizations like Nyaya Health in developing countries around the world, including Zambia, Kenya, Guatemala, and Nepal. If you also want to make a donation go to their website today.

 

 

 

Boomers Seek and Require More Enduring Friendships

Kent Harrington

Over the past several months, I have received many kind and generous messages from family and friends about the publication of the anthology, The Art of Medicine in Metaphors. Of course, when friends, relatives and acquaintances hear others’ medical tales, their expected if not obligatory response, is to commiserate and console or even summon the doctor.

 

For sure there are increasing numbers of baby boomers, now approaching 70 million, who are facing daily health challenges. While there’s no denying that the digital age has ushered in the ability for us to get and stay connected with family and friends, there’s nothing that replaces seeing your family and friends gathered together in a living room, yours or theirs. Each day that may explain why boomers are reconnecting with long-lost friends through Facebook and class reunion websites. Most us in our 60s recognize that it only takes a moment for a lifetime to go by.

 

Some psychologists even suggest that we are not only rediscovering the need to research our roots but realize as the calendar pages turn, how our friendships play a major role in defining the person we are.

 

While there’s no clear life script for sailing into the autumn of one’s life, friendship ranks near the top.

 

Sadly, Americans’ circle of close confidants continues to shrink dramatically and more of us claim to have no one with whom to discuss important matters, especially health issues. A recent study at Duke University and the University of Arizona, proclaims that “Americans Have Fewer Friends Outside the Family.” Based on this survey, it appears there are few aging boomers who are singing these memorable lines from Beatles in 1967.

 

I get by with a little help from my friends. I get high with a little help from my friends. I’m gonna try with a little help from my friends.”

 

So I am grateful to those close friends and family who continue to listen to my story.

 

I recently received this generous response about the anthology from my friend Kent Harrington, a retired CIA analyst and State Department expert on foreign policy issues. It’s clear to many that he’s a consummate writer.

 

Kent served four directors of the Central Intelligence Agency as the national intelligence officer for East Asia, the senior intelligence post for the region. His commentaries have appeared in the Washington Post, Los Angeles Times, Washington Times and leading Japanese newspapers. He has published two novels: “The Gift of a Falcon” (McGraw Hill, 1988) and “A Brother to Dragons” (Penguin, 1993).

 

James:

 

Among Jews there’s something called a ‘mitzvah’.  It’s a good deed, sort of.  It isn’t really the classic concept of doing something good for someone; rather it’s an act that is simply good in itself.  This book clearly qualifies for that label.

 

James Borton has edited well a compendium that is not only fascinating and touching, but also offers the kind of reading that makes—or should make—anyone understand instantly the meaning of empathy.  Given the raw edge that seems to appear on virtually every social issue today—from health care to whether government programs should build communities or simply serve markets—that gentle instruction is sorely needed.

 

The stories ably edited by Borton cut closest to what matters in any medical narrative—not dying.  That’s a statement of the obvious but it also is the unspoken theme.  For those who come to terms with the terminal, if you will, the real message in these wonderful tales is the success of the writers or those written about in figuring out and expressing the fact that ‘not dying’ really means living until you don’t.  It’s a Zen-like concept but  comes through loud and clear.  For instance, the question of refusing heroic measures, or if the right choice is chemo that will destroy the quality of existence while maybe or maybe not extending its duration, or picking the option of nontraditional therapies all send one message.  It’s not about fixing things or avoiding the end.  It’s about living to the fullest when you can.

 

James Borton’s anthology is a fascinating and valuable set of stories from people in all walks.  It has valuable applications not only for health care but also for counselors, clergy, philosophers, you name it.  Taken together, albeit each in their own way, its writers paint a surprisingly similar picture.  It’s a portrait of why we love life for as long as we can.

 

 

 

 

 

 

 

 

 

Heart Patients Want The Doctor’s Hand Not Telemedicine

 

 

 

With more and more baby boomers facing heart bypass surgeries, stents and implantable cardiac devices; it’s quite clear that most of us do not want remote monitoring of our condition. We want our doctor to place his cold and well-used stethoscope on our chest. A newly published study in Telemedicine and e-Health journal confirms that 53 percent of patients with pacemakers, defibrillators and other implanted, wireless devices that regulate or measure heart rhythm, prefer follow-up personal visits with their doctor.

Over the course of nearly 4 years in this blog, I have been chronicling why story matters when one’s life is interrupted. My friends, Sharon Bray and Sara Baker have been diligently writing and guiding cancer patients to craft stories and poems about illness. Both these remarkable writing coaches understand that the act of constructing a story or writing a poem helps patients better understand their event and themselves.

So it’s not surprising that heart patients, like myself and so many others, also want to make sure that their doctor measures more than a heart rhythm, since a device check can never capture confusion and hidden scars. Just a few weeks ago I went to the VA Hospital and the experienced technician performed a carotid ultrasound. The most important part of the examination was that she listened to my story.On the other hand, my cardiologist casually stated that “there’s some scattered medium level plaque build-up in the carotid.” He did not have time to listen to any of my questions since there was a standing line of veterans with a myriad of heart issues to be seen. I left the VA hospital thinking about this examination and my initial entrance into the emergency room 4 years ago.

Time does not heal all scars and I have often wanted to speak again with my surgeon. I wanted to know what exactly happened after my heart stopped. I was told by the hospital’s operating technician that my heart was encased in a heart net since this cloth positions it for the creation of the bypasses. There’s something comforting about this notion of the heart swaddled in a net. Yet, why do I also have nightmares about this violent act towards the heart. So, I write about it and ask my readers and students to share their stories. For sure, may of us write to let others or the world at large know that we exist. Or maybe it’s to reaffirm some newly identified moral compass with a built in GPS that enables us to follow a path of loving kindness for all lives that intersect with our own.

The heart narrative can and does help lift one’s injured spirit but it can also bring to the surface the chaos buried deeply inside us so that the only recourse is some grief for the old self. Again, each day, when I stand in front of the mirror and examine the fading scar on my chest, it’s a daily reminder of my mortality and a change of heart.

Tell me your story. – James Borton