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)
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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.”
Thanks Kathy and Nancy for yet another opportunity to see compassion at work. And for a good reminder that there are lessons to be had, second chances to be gained, if we can just stay aware.
Well-said, Janet! I agree, Nancy has done a great job of showing compassion at work and reminding us of the importance of staying aware. Thanks so much for stopping by and sharing your thoughts.
Janet, I’m so grateful for second chances and do-overs, and I’m grateful you’ve dropped in to chat with us. Thank you.
Nancy, this story reminded me of the importance of touch–and of course, human kindness. I’ll hold it in my heart today and try to practice its message.
Marlena, you are so right. There is something magical and spiritual about laying loving hands on another… and having loving hands laid on us as well. Thank you for commenting.
This moving story touches me deeply and ties in beautifully with the power of Story to heal and serves a reminder that stories don’t have to be written to be healing. Thank you Kathy for this series, and thank you Nancy for sharing this story of compassion in action.
How true, Sharon. The power of story to heal reaches out to us in so many different ways. I am fascinated by how much we can all grow and heal just by listening to each other’s stories,”compassion in action” as you say and Nancy showed us so clearly. I appreciate your perspective,as always.
Story is like a medicine, but without the cost and potential side effects. And, and, and it’s healing to both teller and receiver. How great is that! Thanks, Sharon.
Nancy, your vivid description made me feel like I was at the patient’s bedside faced with the same fear. I loved the idea of sacred lessons, that you believed you were given a second chance to share your gift. From my own experiences in hospitals, it has been the compassion of nurses that meant the difference between hope and despair.
I like to think that stories allow us the benefit of gaining experience without having to walk in someone else’s shoes (or in my case, Nurse Mates). Thank you, Pat, for joining the conversation.
Nancy and Kathy, how wonderful that you’ve brought the powerful combination found in narrative medicine to the attention of writers and storytellers. Storytelling in and of itself is very powerful, but as a healing tool, it is so much more restorative than any medication on the market. Storytelling can heal in a variety of ways, and I don’t think those need to be listed. We can each think of a way in which it has healed each of us who write memoir. Thanks to both of you!
Sherrey, I appreciate( as usual!) your insightful, thought-provoking response,especially “storytelling as a healing tool can be more restorative than any medication.” And I agree, we all have stories to share and listen to that can tap into that healing, restorative power. Thank you for adding so much to this conversation!
Sherrey, you’ve hit the nail on the head. Understanding and appreciating story restores what can’t be fixed with traditional medicine, and that’s an awesome thing.
What a powerful story towards humanity! We, in medical profession want to take a good care of the patients, and at heart, everyone is afraid of the four letter word. It is sad but the truth! While working in a remote place in another part of the world, I was afraid of so many health issues for my two young kids. I also faced life and death situation for my patients. Pregnant patients in labor would come from nearby(?) villages at any hour in the middle of night. One night, I needed to do emergency C- section. The Anesthetist (P.A) was dead drunk, he could hardly stand up straight. I told him to go home and gave the spinal to the patient myself, asked the head nurse to monitor the patient. The surgery went well and it was a 7 pound and 10 oz boy with perfect APGAR score. My idea was, the risk of patient and her baby dying was much more grave if the drunk anesthetist had handled my patient and the baby.
What a gripping story, Smita. I can feel the tension and I want to cheer you for standing up and doing what you needed to do for that mother and baby. Thanks so much for stopping by and sharing your amazing story of how keeping the patient safe is a priority and led to a positive outcome. I know you have many of these kind of stories to share so I hope you keep writing 🙂
Smita, your experience is everything that makes narrative medicine beautiful:
1. There’s a quick decision to be made
2. There’s fear and uncertainty on the part of the caregiver
3. There’s humor, with the drunk anesthesiologist running around
4. All of this revolves around the wellbeing of another human being and her unborn baby
5. And then there’s you sharing this so that each of us can take from it what we need.
Thank you!
I can’t emphasize enough how important I feel it is for health care providers and caregivers to get to the bottom of their feelings as a way to reduce and relieve their own stress and misgivings, confronted as they are every day with illness and death. Writing is a powerful tool for them to do that. I can still remember the first oncologist John and I visited after his cancer diagnosis. I was seven months pregnant at the time and in front of the two of us she burst into tears as she told him how “sorry” she was, but that he and I should “face the facts” which is that he probably wouldn’t survive the year. I remember he and I sat there in shock as we watched her sob and tell us how terrible she felt for us, especially with a new baby on the way. As many of you know who read my memoir, John lived for another seven years after that. But to this day, I remember how unsettling that was for him and me; she would have benefitted greatly from writing her stories, keeping a journal of her feelings. . . I believe it would have made her a better doctor.
Susan, What a heartbreaking testimony to the impact a health provider’s reaction can have on a patient’s and family’s acceptance of a diagnosis. I had the same thing happen to me when a covering Dr told me “it didn’t look good” in answer to my question of what my prognosis was. My own Dr had told me “this is curable and we’re going for the cure” but when I saw this other MD several months later, I felt the need to ask him. I remember feeling so vulnerable to his response. You and John were at your most vulnerable and needed your hope nurtured, even if the prognosis wasn’t good. You could still hope for as much precious time together as you could have. I am very leery of doctors who predict survival time frames. Miracles happen everyday. The fact that you had seven more years together from the day you were told you only had a year speaks to that. Thank you so much for sharing your story and for all you do to encourage others to share theirs. I whole-heartedly agree that health care providers can benefit greatly from finding a channel such as journaling to work through the challenges they have to face. I had plenty of wonderful doctors and nurses who gave me the grim facts but still nurtured my hope in healing. They made all the difference in the world.
Susan, you’re absolutely right! There must be a way for caregivers to de-stress, and journaling is perfect in so many ways. For one, it’s a good way to mark our progress and growth. It’s a “wow” kind of feeling to look back and compare how you felt about something 20 years ago with how you feel about it today. And for two, journaling makes it easy if you ever want to share your experiences with the world at some future time. And then, of course, there’s the whole not falling apart on sick people who are already trying to not fall apart themselves. There’s definitely that!
What a moving, powerful story, Nancy! You’re blessed you had a second chance to do the right thing — so often, one has to live with the guilt and regrets of being misguided (and acting badly).
Kathy, thank you for introducing us to Nancy!
Debbie, I’m happy you enjoyed Nancy’s poignant story of making a difference through second chances. Thanks, as always, for joining in the conversation!
Thank you, Debbie. My life has been filled with second chances, and am I ever grateful for that!
I like that we have a second chance. Powerful stuff. Thank you for sharing, Kathy.
My pleasure, Grace. I’m glad you enjoyed Nancy’s guest post. Thanks for stopping by.
Thank you, Grace. It was my pleasure.
Wonderful story, beautifully written. Inspires me to talk about some of my “less than compassionate” moments as an ob/gyn. Thank you.
Welcome Dr Anne! So glad you stopped by and took the time to comment. I’m sure you have many stories to share from your ob/gyn perspective. Feel free to do so. I’d love to hear them.
Thank you, Anne. The thing about our “less stellar” moments is that we all have them, and, hopefully, we all grow from them. Thanks for joining us.
Kathy & Nancy,
This is a story with a deep nugget of wisdom embedded in it. Kindness is key. As the Dalai Lama has said, “My religion is very simple. My religion is kindness.” I try to make my religion – my very approach to life – one of kindness. As a bereaved parent, I found that was what carried me through grief and, through my writing, I hope it has helped others. Nancy does a wonderful job of showing her evolution over time. We all get multiple chances for “do overs.” And that is a great blessing!
Dear Eleanor, Thank you so much for stopping by. I really appreciate your comments about the importance of kindness in our world. Your inspirational memoir Swimming with Maya,a poignant story of love and life after the loss of a beloved child is a powerful testimony to the resilience of the human spirit. It will touch many who need the strength and courage to move on from such a loss; a gift and ultimate kindness for others. Blessings, Kathy