Posted by Kathleen Pooler/@kathypooler
“Kindness is more important than wisdom, and the recognition of this is the beginning of wisdom.” Theodore Isaac Ruben, MD One to One.
I am very happy to feature Memoir Author Nancy Stephan in this guest post on Narrative Medicine. We met online. Nancy is the author of The Truth About Butterflies, a poignant story about the death of her beloved daughter, Nicole. My reviews are on Amazon and Goodreads. Nancy worked in health care as a nurse for 18 years before pursuing her degree in creative writing.
Welcome , Nancy!
Narrative Medicine, defined as the intersection of medicine and the humanities, is not a new concept. Artists, writers, patients, physicians and caregivers have been combining literature and medicine for as long as people and the arts have existed.
Thanks to Dr. Rita Charon, the founder of narrative medicine, this intersection has been formalized. The roads have been paved, and street signs have been put up. It is no longer just an unmarked thoroughfare;
it has become a destination for caregivers wishing to improve their competency, for sick people wishing to improve their health, and for writers like me to share the stories that have helped us grow.
This is one of my stories from my nursing career:
Narrative Medicine:
A Tale of Two Men and a Four-letter Word
Nobody wanted to work on the 4th floor. That AIDS man was up there. It was the mid-1980s, and the greatest fear of every nursing student in our cohort was being assigned an AIDS patient. But, eventually, it happened. My fellow student Cleeta and I were both placed on the 4th floor. We were both assigned our customary one patient. Mine was an elderly lady with dementia who kept putting on the call light, looking for her feet; someone had stolen her feet. My friend Cleeta’s patient was the AIDS man at the end of the hall.
“I’m not taking that man,” Cleeta said. “I want to be reassigned!” But Mrs. Kluth, our clinical instructor, told Cleeta she would either take the patient she was assigned or she would be sent home. Grudgingly, Cleeta grabbed her things, and we headed to the 4th floor.
As the two student nurses working on the unit, we were taken to the room at the end of the hall and given a full demonstration on how to follow strict isolation protocol. There were gowns to be donned, and masks and gloves to be worn. There was a bleach solution to be mixed and cleaning guidelines to follow. I looked beyond the nurse and her droning voice and into the room where a skeleton of a man lay on the bed gaunt faced and wet with perspiration. The white sheet was pulled up to his waist, his nude, rib-barreled chest rising and falling with each breath.
As noon approached, we quickly passed out the lunch trays. The AIDS man’s tray was the last one left on the cart. Cleeta, having avoided it as long as she could, pulled the tray from the cart and walked with a quick pace toward the man’s room. “Here,” I said as I followed her, “I’ll hold the tray while you gown up.”
“You don’t need to,” she said.
And when we reached the room, Cleeta squatted in the doorway, put the tray on the floor, and slid it across the slick, shiny tile. “It’s not like he’s gonna eat it,” she said. “Look at him; he’s catatonic.” And she walked away leaving me standing there.
The man was lying on his side facing the door. His dark, sunken eyes were fixed on me. “Are you hungry, sir?” I asked from the doorway not knowing what else to do, but he didn’t respond. His eyes were stuporous, his naked body was wet with sweat, and his respirations were rapid and shallow. I donned a gown, mask, and gloves, and held my breath as I stepped in quickly to move the tray from the floor to the bedside table. I held my breath because I feared the AIDS virus might be swirling about in the air. The mask might not have been enough to protect me.
It had all been such a disaster, and I thought about it later that night as I lay in bed. I wasn’t prepared, I thought. It happened too quickly, and I didn’t have time to get my thoughts together. Besides, he wasn’t even my patient. I struggled, unsuccessfully, to justify the events of the afternoon, but the truth was inescapable. I should’ve behaved with more compassion. I should’ve walked into that room and touched him, not the touch that demands something, like a blood pressure or a pulse, not the rattling around of bed rails or the shifting of covers or the other busy work that our hands find to do, but the simple touch of one human being to another. I should’ve offered him a sip of water.
The truth was, even though I was a bit kinder, I was just as chickenshit as Cleeta. I wasn’t afraid of the AIDS man himself. I was afraid of what was killing him. I was barely 20 years old, and the only thing I was certain of was that I didn’t want to die.
Some years later while working for a home-health agency, I volunteered to care for another man who was dying of AIDS. His name was David. Thanks to medical research, we were a little wiser about the AIDS virus and its transmission, but people were still dying from the disease at alarming rates. As such, there were few caregivers lining up to care for people with AIDS.
David lived in a posh, midtown penthouse that was filled with beautiful furniture and exotic artifacts from his many travels. For the six weeks that I cared for him, we talked in great detail about life and death and the unknown. I sat on the side of his bed while he showed me pictures of his adventures in Africa and Europe and South America. I listened to his action-packed stories and outlandish tall tales. And every day we ate plump, juicy oranges that were delivered fresh from the farmer’s market. David insisted that I invest in a Walkman so that on restless nights when I found it difficult to sleep, I could listen to the sounds of nature, which is exactly what he was doing the night he slipped away.
These two men dwell in my memory as a jarring juxtaposition. Even though my experiences with them happened years apart, I view it as one event, one sacred lesson. When, for whatever reason, I miss an opportunity to lay loving hands on someone in need, the universe will provide me with a second chance to get it right.
It’s up to me to take advantage of that second chance and turn it into something beautiful.
Author’s Bio:
Nancy Stephan is the author of The Truth About Butterflies: A Memoir, which earned the Atlanta resident a 2012 Georgia Author of the Year Award. She holds a master’s degree in creative writing from Kennesaw State University and is the Writing Center supervisor at Georgia Perimeter College, Dunwoody. Her first collection of poetry, A Gary Girl’s Guide to Good, was published in 2012. She is currently working on a collection of essays entitled, 24th Opus.
LinkedIn (Nancy Stephan)
***
Thank you, Nancy for sharing your heart-wrenching story of caring for AIDS patients. It is reassuring to know that compassionate care has become the focus in health care and that narrative medicine is helping both patients and caregivers experience healing by sharing the stories that matter.
How About You? Has storytelling brought healing to you? Have you had any experience with Narrative Medicine?
We’d love to hear from you. Please share your stories and comments below~
Nancy will be giving away a copy of her memoir to a commenter whose name will be selected in a random drawing. She is also offering a 20% discount if you order The Truth About Butterflies here.
Announcement: Congratulations to Linda Thomas and Louise Carlini! Your names were selected in a random drawing of commenters: Linda won Slants of Light Anthology by Susan Weidener and the Women’s Writing Circle; Louise won Adopted Reality by Laura Dennis.
This week: I’m over at Nancy’s blog with a guest post, the first in a series on narrative medicine: “Healing Each Other Through Storytelling: The New Face of Narrative Medicine.” I hope you’ll join us there,too.
On Thursday, 5/9/13: An interview with writer Sarah Freeman on ” Ghostwriting a Memoir.”
