Cell 2 Soul: The Humane Health Care Blog

About Illness Narratives

We have been interested in Illness Narratives for decades.  These are also called pathographies or autopathographies.

Composing your illness narrative can help your health care provider to make a more accurate diagnosis, and order more targeted tests and treatments.  It will also enhance most providers' empathy.

Here is some background information on Illness Narratives: Download The Stories Patients Tell

and a guide to composing your own Illness Narrative: Download Autopathography Guide

If you have specific questions please email DJ Elpern.

Charity Sunshine Tillemann-Dick is a soprano, composer and presenter. A recipient of two double lung transplants, she speaks and performs frequently at concerts, conferences and events around the United States.

Her TED talk is inspirational.

She has published a book, The Encore: A Memoir in Three Acts (October 3, 2017) that she spoke about on October  on NPR^.

Scott Simon's October 1, 2017 NPR Interview of Charity Telemann-Dick is worth listening to.

If you are not familiar with Ms. Tillemann-Dick’s story you will appreciate the above links.

There are three types of Illness Narratives. Hers is a Restitution Story.

Wounded Healers

There was a moving essay in the NEJM this week by a young woman, studying for a doctorate in psychology, who received chemotherapy while doing medical research on a gap year between college and graduate school.

“I stuck Post-It notes on the wall behind my bed, revealing data unrelated to my chronic illness but vital to my humanity, such as “I am a big sister” and “I climbed Machu Picchu” and “I like cupcakes” — so that anyone coming to round on me could see who I was, under the hospital gown…”

Her illness enabled her to recognize that “provisions for a supportive companion might make an enormous difference in patients’ experience of care. As a researcher, I wanted to do something about it. So I decided to write a grant for chairs in the infusion unit.”

“’The chair grant,’ as I came to refer to it, seemed to encapsulate the chimera that I was the fusion of patient and researcher. “

“It was not about chairs: to me, it was about comfort, compassion, dignity, and support. It was about not being only a patient or only a researcher…”

Many of you will be inspired by Jennie David’s short essay. Here is the pdf: Download The Chair Grant

The day after reading Ms. David’s memorable piece, I saw an article in the NY Times on “Doctors with Disabilities,” that is a fine lagniappe to Jennie David’s poignant viewpoint.

A few of you may be interested in these articles. The Wounded Healers is a big and important topic.

Hydrochloric Acid Blues

Stomach acid is an unseen factor in the digestive process.  However, for some people it is threatening because of the suffering it can inflict.  Despite numerous physicians doing their best to ease the ailments caused by my acidity issues, since childhood, I have suffered more than one long bout of struggling to moderate this culprit. An embarrassing incident, long ago when I was in the third grade, resulted in hydrochloric acid having a starring role as a villain in my life.

"The Third grade class at Immaculate Conception school was composed of about thirty students, young, shiny-faced beacons of potential. I was among the throng of hope, anxious to do everything to the high expectations of my mother and my godmother.

I had a history of stomachaches.  Nausea. Cramping. Vague discomfort.  The school nurse was accustomed to my regular visits.  She mentioned them to my aunt, a nurse supervisor at the hospital, who was visiting the school.  My aunt looked at me briefly, and answered over her shoulder "Nerves."  It was an unofficial diagnosis, but I could tell the school nurse believed it.  She didn't write a note, just picked up the phone to summon my overburdened mother to interrupt her day and rescue me."

Read full essay:  Download Hydrochloric Acid Blues

The author in Grade 2

Author Bio: Katina Pontikes writes in retirement as a form of therapy and introspection.  She lives in Houston, Texas and on the shore of Lake Chapala in Mexico, where she counts herself fortunate to enjoy the adventures of an expat. She still has stomach issues, only now she takes an acid suppressing medication, never quite able to tame the stomach monster.  Email:[email protected]

 

On Pride and the Struggle

There’s an old French saying: to cure sometimes, to relieve often, to comfort always.  It could serve a mantra for all health care professionals. It reminds us that it can be more important to treat the person who has the disease than it is to treat the disease the person has.

Two recent vignettes were sent to us that illustrate these points.

Croina’s Pride by James Channing Shaw and

My Struggle by Lee Thompson

Both provide valuable insights for patients, their families and all care givers.

They appear in The Online Journal of Community and Person-Centered Dermatology (OJCPCD), a free, post-publication peer-reviewed, full text, open-access, online publication.

Caregiving's Imperative

Arthur Kleinman's recent Perspective piece in the New England Journal of Medicine deserves a wide audience.  Unfortunately, full access is open to only NEJM subscribers or those affiliated with academic institutions.  If, after reading the following quotes, you want to read the entire article, please email me and I'll send you a copy.

picture from http://kennonsburgumc.com

"Modern medical practice's greatest challenge may be finding a way to keep caregiving central to health care. The moral core of medicine may seem abstract, until you see health professionals passionately struggling to be useful, compassionate, responsive, and responsible while working with the indifference of bureaucratic rules, the cold counting and costing of institutional audits, and hard-to-balance personal demands on their time and concern. 

Looking at medicine [as a caring vocation] reinforced my belief that the structure and demands of medical schools and hospitals create obstacles to caregiving. How to revivify caregiving in medicine became the issue. Teaching about illness experiences remains important. Yet the moral–emotional core of those experiences deserves greater primacy — as does the social suffering that affects everyone, but especially marginalized people already injured by poverty, isolation, and other forms of structural violence."

From Illness as Culture to Caregiving as Moral Experience
Arthur Kleinman, M.D.
N Engl J Med 2013; 368:1376-1377April 11

Dr. Rakesh Biswas alerted us to an article in the Stanford Medical Alumni Magazine about Kleniman and his work -- especially his recent epiphany.  See:  Medicine: A Love Story.  The past few paragraphs are especially important.

Far Side of the Styx

"Soon your life will have flown like a bird from a branch!"

"A man in your fifties—and you still would be young?"  – Yehuda Halevi

You can cry in heaven if someone kills you against your will
You can take time to mourn before visiting your loved ones
back on earth to tell them you're ok.  It takes time
to come to terms with death even on the far side of the Styx
if it is you who has been killed.  "I wouldn't have it
any other way" reserved for those whose deaths were innocent

I have a lot of company here, you say, now that I have accepted my fate
kept apart ‘til then lest the other souls start remembering. . .
and couldn't leave the clouds to comfort you myself in pain
not of the bodily kind but of the soul but now I count my blessings

too and not just the mistakes and carelessness that brought me here
no more pain and I can move freely about the earth without my power chair
I don't have to hold on for the next medication or nurture false hope

It's done.

– Martha Deed
The Last Collaboration, p. 197

See PDF:  Download Martha Deed Selected Poems

The Last Collaboration, a chaos narrative, is a re-construction of Millie Niss's life and death in a community hospital ICU. Because Millie was intubated but alert, her side of every conversation was recorded in a series of notebooks she sent home with her mother, Martha Deed. Millie's notes, emails, the daily diary she sent home, and posts to her blog are set into frames constructed from her mother's log.  The Last Collaboration is a powerful document from which we can all learn.

Illness narratives (pathographies) may be broken down into three categories:  quest, restitution, and chaos stories.  The latter is the rarest and perhaps most important since there is much to learn from our mistakes.  The two former ones can be “feel-good” narratives.  For more on these types of narratives see: “From narrative wreckage to islands of clarity,” a fine article from Canadian Family Physician.  The Last Collaboration is a true “chaos story” and a narrative we can all learn much from.

 

Drugs, Death and God

by Chelsey Bartlett

(you can also read the PDF:  Download Drugs, Death and God

There are three standard reasons college students want to become a doctor: money (because they haven’t checked out how much you can make as a contract lawyer), a more-than-lukewarm interest in science, or the cliché tagline: “Because My Parents are Doctors”, which doesn’t really explain anything. Some common “exceptions” exist as sub-reasons, including the desire to help people while simultaneously having a more-than-lukewarm interest in science or “Because My Parents are Doctors and are Forcing Me to Be Pre-Med upon Threat of Disownment.” I find my motive to be a bit more distinctive than the typical ones: everything boils down to me being on my deathbed under the influence of hallucinogenic painkillers while God was giving me a sign that I am meant to be a doctor.

I’ve never been particularly overzealous in my religious pronouncements, but even as an 8th grader I knew that when God gave you a signal, He meant business. The end of middle school was approaching and the customary set of flu-like symptoms began bombarding me. My physician recommended, in a rather blasé fashion, to take some Ibuprofen and get more sleep, so I did. The symptoms stayed. And then got worse. My fever regularly spiked to 104 and higher, and I couldn’t even keep tepid Sprite down. Mom took me to my doctor again, and this time he realized his mistake: this was no snotty, vomity flu but a case of pneumonia gone sour.

My right lung had been completed infiltrated by the gooey crust that is pneumonia and my left lung was showing initial signs of surrender as well. The small-town hospital in which I helplessly dwelled for days was no match for this angry battalion of germs, so some nice Australian pilots flew me in a helicopter to the Children’s Mercy Hospital an hour away. I arrived dazed and surrounded by a large group of interns in the ICU, much like in Gray’s Anatomy. They wanted to put me on a respirator because my oxygen saturation was so low, but I screamed and cried in panic at the foreign machine and was eventually just given a giant oxygen mask instead. Crazed kids apparently aren’t worth the effort.

After the interns left, I calmed down enough to realize that the strangest knowledge had come over me. I knew that if I fell asleep at that moment, I could choose not to wake up again. I was legitimately dying. Of course, having been pumped full of drugs at the time, I instantly fell asleep at that precise instant of revelation. When I groggily began to awaken, everything was different. Ethereal children ran into the room carrying helium-filled balloons toward their father in a bed next to mine. He smiled. His gaze turned to mine, and somehow at that moment I knew I was his doctor and that, though I was confined to a bed, I had just saved his life. I smiled back at him, beaming with pride.

Hallucinations like this repeated in cycles throughout my next few days in the ICU, though the items the ethereal children carried ranged from balloons to stuffed bears to insanely unhealthy-looking cheeseburgers. I began to adore my own team of caretakers. The pregnant nurse who brought in the food I could never eat took on an aura of poised mystery. My respiratory therapist became the cheese to my metaphorical macaroni. And my doctor: well, he was a demi-god. Slowly my runaway lungs worked their way towards health, and by the time I left the ICU, I knew that my future was in medicine.

My idolatry of these figures faded in time, but one religious aspect of this experience never left me: God had used this time of sickness as an opportunity to give me my calling as a physician. Drugs and exhaustion certainly made their unique contribution, but never has my mind been as clearly made up as during and after my fierce battle with pneumonia in that ICU. Of course, to confirm this new love for medicine I did my homework: I witnessed my fair share of bloody knee-replacements and craniotomies, volunteered to wheel-chair wrinkly old people to and from radiology in the local hospital, and read everything ever written by Atul Gawande, Abraham Verghese, and my all-time favorite, Richard Selzer. Now I’m a gung-ho pre-medical student itching to start applying to medical school, all thanks to death, drugs, and a sign from God.

Author Bio: Chelsey Bartlett is a junior studying Human Biology at Stanford University. After graduation, she hopes to get a Doctorate in Psychology and become a clinical psychologist. In her spare time, Chelsey practices archery, works for a Huntington's Disease outreach group on campus, and tutors underprivileged middle school students. You can reach her at: chelseybATstanford.edu

Elyn Saks' Tale of Mental Illness

As a mental health law scholar and writer,  Elyn Saks speaks for the rights of mentally ill people. It's a gray area: Too often, society's first impulse is to make decisions on their behalf. But it's a slippery slope from in loco parentis to a denial of basic human rights. Saks has brilliantly argued for more autonomy -- and in many cases for a restoral of basic human dignity.

In 2007, deep into her career, she dropped a bombshell--her autobiography, The Center Cannot Hold.     In it, she reveals the depth of her own schizophrenia, now controlled by drugs and therapy. Clear-eyed and honest about her own condition, the book lent her new ammunition in the quest to protect the rights and dignity of the mentally ill.

This TED Talk by Elyn Saks is enlightening.

 

Walk a Mile in My Brace

by Donna Hoover Bechtler

"My Russian ballroom dance instructor pulled me toward him... My pink satin strappy stilettos made my unreliable legs look long, lean, and feminine. But I moved as though my left foot were embedded in the slick hardwood floor. Around me teachers and students gracefully swirled in Viennese waltzes or jived World War II style. I headed for a chair and my comfortable purple suede shoes." Download Walk a Mile in My Brace

This is the story of an orphan patient.  She has "lived with this [poorly defined neurological condition for seven years.  The doctors at Mayo and elsewhere do not have a name for it."  Her story exemplifies the old saying, "Fall seven times, get up eight."  To read more:  Download Walk a Mile in My Brace   

Author Bio: Ms. Bechtler lives in Charlotte, North Carolina, with her husband, Michael Gross, a poet with a day job, and with their cat. She has an undergraduate degree in English from Queens University where she graduated summa cum laude and subsequently earned her MFA.  Email DHB