The author continues his extraordinary journey with his special kidney patients, who taught him the true meaning of triumphing over tragedy and chronic illness. These patients include Sam, who humorously taught others how to listen without assuming the worst; Dawn Dungan, who knew what it was like to face “the empty dialysis chair” and whose fear of death turned into “my greatest blessing”; and Ramkupar, a brave young East Indian man who rose above his kidney failure to graduate from law school and into a career with a prestigious law firm. Along the way, the author also cogently examines “the loss of connection,” what patients hope to get from their healthcare providers, a treatise on refusal and acceptance, passing through “the valley of depression,” and “a vision of power.”
(1) What do patients really hope to get from their care providers?
(2) What drew healthcare providers into this work?
(3) Ultimately and originally, what do they hope to have healed in themselves by caring for their patients?Once we recognize that we all come to this work to heal one another, that we all are being taught and guided by those for whom we care, we establish true connection. At that moment, we are reunited with hope, support, and pleasure.Wanting It Over: “The Game”
Sam’s three daughters rushed up to me, their eyes swollen and drilling me with their urgency, their arms flapping at me like the wings of half a hundred bats.
“He wants to die! He wants it all to stop!”
We knew his lungs and heart had been giving out for years. His youngest daughter had left her job to live with him. These last two years, whenever she tried to go out, he’d drag her back with a flare of his angina. She didn’t know whether to hate him for controlling her every movement with his symptoms, or hate herself for harboring such feelings. But this much was sure: everybody was just sick to death of the whole thing.
“What did he say?”
“He wants it to end. He said, ‘Get it over with.'”
I went in to check out this latest, surprising version of Sam. He was breathing comfortably, glowing with his usual rosy hue of blue, a look of irritation hardening the gaunt lines of his face.
“Hey, Sam. Your kids tell me you want it over.”
“Damn right, I do! One minute to go. Get it over with!”
“Get what over with?”
A book called Final Gifts captured the metaphors and floating double-speak of people who are seriously ill or dying11. It’s like a dream workshop where you tell about the pink elephants munching the purple hair off nomads’ heads, and someone says: “Ah, yes; I know what that means.”
“The game,” he said.
At such moments I get to feeling so crafty, so… wise.
“The game of life, Sam?”
He rolled back his horny-toad eyelids to look at me, sharp as a pin and appalled by my stupidity.
“Hell, no! The basketball game!”
The TV floated a few inches above his head. Indeed, there was about a minute left in the last quarter. When I looked around, his daughters had their heads in their hands, their tears breaking into helpless sobs of laughter.”
Listening to Everything in Life
If there’s anything illness should teach us, it’s to listen. I’ll take that a step farther: how people shape the end of life fascinates me because they have so much to tell us about how we can live our lives from this time to that.
Listen to the nonsensical ruminations of the dying? How about we should listen with much more attention to everything in life? Learn to listen with a crazy looseness, a ridiculous humor, and more than a little childish delight at these word-game summersaults. There’s only one way we won’t get it right: like all adults, we can be foolish enough to presume we’ll get it right.
Visions: The Dawn Dungan Story
Dawn Dungan responded to an article I wrote that was posted on iKidney.com, “The Spirit in the Empty Chair”12:
“Having had diabetes since I was 10 years old, I had been told often about diabetic complications: blindness, heart attack, kidney failure. At the time I worked in dialysis, I was in my early 20s, and, as is so often the case with youthfulness, I thought I was infallible. Those complications only happened to older people, I rationalized. Still, the seed of fear had been planted, and I was very much afraid.
“As weeks passed into months and months into years, my fear of dying became symbolic in one very tangible thing: the empty dialysis chair. As the only employee in a one-person office, I knew the patient schedule intimately. As part of my job, I kept patient attendance sheets up-to-date so insurance could be billed. If Mrs. D didn’t show up on Thursday morning for her dialysis treatment, I knew it. If Mr. K missed two appointments in a row, I was aware of it and would ask about him.
“Patients’ absences spoke volumes to me. Whenever I went into the treatment area, I would turn my attention away from an empty chair. When a patient died, the staff was quietly told, and that was the end of the conversation. On the day the news came about a patient’s death, the empty chair seemed to scream to me that person’s absence. Although I never talked about it, I quietly began questioning myself: ‘Is this what life is? Will my life come down to an empty chair only to be filled by someone else in a couple of days after I’m gone?’
“Sadly, there always seems to be someone waiting in the wings needing to start dialysis. Each empty chair that filled again with life meant someone else had been lost to us. I wouldn’t want to interview the new patient to get necessary papers signed. I wouldn’t want to get to know them and their families. I wouldn’t want to like them. But I always did, and the cycle would continue. This rotation solidified my belief that I needed to avoid dialysis at all costs or I would be replaced, too.
“Many years later, when my diabetes progressed and I experienced kidney failure, I chose a no-treatment option. My life had moved on, but my fear hadn’t. Whenever my physician walked me into the treatment area to look around, I would mentally shut down. I could see people moving about, could see the nurse’s lips moving as she talked to me, but I couldn’t hear a thing. When my doctor advised grief counseling for my family, I gave in to my family’s request and changed from no treatment to in-center hemodialysis.
“While I can tell you my fear didn’t go away overnight, it did go away. The last two years I was on dialysis, I was able to embrace that fear with great joy. My greatest fear had turned into my greatest blessing. Had I not chosen to go through the struggles and the difficulties, I would have never known the freedom I feel. Now, death will be the greatest milestone of this life for me. What a turnaround from where I started! I look forward to it with great anticipation and excitement. In the meantime, I look forward to the dawning of each day because it is a day I have never seen before. There is so much excitement in dying living.”
It’s a “Blessure”
The French word for a wound, “blessure,” has the same root as “blessing.” So often the hinge between despair and excitement, between refusal and acceptance, turns on how we envision our situation and our potential.
Refusal is not a failure or an act of self-hatred. It’s the decision that what lies ahead is not worth the pain involved. Acceptance is not just an act of “hanging on.” In its best form, it’s taking the chance, the risk, to be transformed by the unknown that awaits us.
In Medical Care of the Soul, I drew the following figure to summarize the authors’ descriptions of how we deal with illness, loss or even death. Elizabeth Kubler-Ross’ terms13 are probably the most familiar.
Passing Through the “Valley of Depression
“Two themes stand out for me:
(1) Depression–feelings of helplessness, powerlessness, and hopelessness– are inevitable.(2) We must pass through that valley of depression to attain the acceptance and transcendence awaiting us on the other side. The more we struggle to avoid the depression, the longer it takes to reach the other side, and the more we’ve exhausted our resources by the time we get there.
A Vision of Power
I wish every dialysis patient, or potential dialysis patient, could have a vision of what power you have to experience life and to heal those of us around you. Your disappointments, victories and defeats will prepare us for our own. How you deal with your challenges will write the stories we and the generations of your families will use to formulate their and our own life decisions.
We speak to you of Kt/Vs, phosphoruses, dietary indiscretions, and too much fluid gains. Better you should talk to us of what you’ve come to realize about life’s meaning, how you rose above the latest loss, how much a person can achieve once he realizes his time and options may be limited.
The Spirit Lives: to Ramkupar With Love
Ramkupar’s father had invited two dozen adoring East Indian family members, friends, and prior students to his son’s graduation from a law school. Ahead lay the Bar exam, then a career with a prestigious firm with branches all over the country.
Ramkupar almost disappeared inside his emerald robes as he walked down the aisle, a bit wobbly from the ravages of steroids on his hips. He was thin as a rail, his head so slight his ears had all they could do to hold up his cap. But he was finishing near the top of his class, with honors and special notice, and without a handout from anyone in the world.
After 10 years on dialysis and a failed transplant from his mother, he’s moving to daily home dialysis so he has a better chance of meeting all the heavy demands of his new job. When I went over to tell him how deeply awed I am by what he’s achieved, he cut in: “I can’t thank you, all my doctors, enough for what you did to get me here.”
I told him it wasn’t true. Every bit of it he’d done himself–sometimes in spite of us and our treatments.
The Gene Known as “Hope”
Where in that angular body had he found such reserves of persistence, of energy? It’s not that I have any illusion we all have to rise gracefully above our troubles. Heck, I’m bummed if I just have to get my car worked on. But I wonder, where in our mitochondria or genome do we store the gene known as “hope”? It’s in him, this I know.
Around him at the graduation were perhaps 30 family members, four generations: tiny round beautiful old ladies in saffron robes and exotic jewelry; young sisters and cousins and cousins eight times removed on their way to becoming neurology residents, pediatricians, lawyers, engineers, architects; five year old soccer goalies and three year olds with eyes as big and dark as the new moon; and one baby with the softest skin I’ve ever felt in my life. Give me that bonnet of black curls and those pudgy hands to stroke, and never again will I feel stressed.
Never Give Up!
There were also half a dozen doctors who’d trained under Ramkupar’s father and adored him, friends from all around the country who’d passed their Medical Boards with Dad’s help and still keep in touch. His mother, down one kidney, bustled around making sure everyone was deliriously comfortable.
On the ride out to the graduation, one of the family friends remarked: “You know what’s amazing about Ramkupar’s mother? She never gives up. She never despairs. Even when Ramkupar became sick, when she gave him her kidney and then he lost it, she was so heartbroken. But she never let it stop her.”
And farther back, perhaps Ramkupar’s cells had absorbed his parents’ long climb up through hard times in India, to the top of their educational system, on to a struggle I’m sure was brutal to get to America and make a way here.
“A Vast Panorama”
A vast panorama floats behind that: a view of the world and our place in it that sees suffering in a way I can intellectualize, but can’t begin to experience. We come, we struggle, we accept, we try again, we get up, we scramble over this hill only to face the next one, and all the ones that will come after that ’till the end of time.
Perhaps Ramkupar had been borne through his hardships on the shoulders of everyone who loved him, loved how he’d touched them, loved his parents, loved all his ancestors. But, on this day, I felt the opposite. It was we who were all lifted on his slim shoulders. In his walk, in his wondrous cockeyed smile and his teetering graduation cap, he showed us: there is nothing powerful enough to hold us back.
The burdens life throws in our way are as grains of sand in the eye of a great God. They will make us look. They will make us pause. They will remind us how abundant are our opportunities to choose. They will remind us we are of flesh and earth, even as we rise in spirit beyond all we thought we ever could be.
10. Mayo, P: The Healing Sorrow Workbook. New Harbinger Publications, Oakland, CA 2001. 11. Callahan, M, and Kelly, P. Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. Bantam Books, New York, NY, 1992.
12. Bartlow, B. “The Spirit in the Empty Chair.” iKidney.com.
13. Kubler-Ross, E. On Death and Dying. Scribner Classics, New York, NY 1997.
About the Author
Bruce Bartlow, MD, is a nephrologist and intensivist practicing in Redding, CA. His books, Medical Care of the Soul, and the soon-to-be released Healing Through Times of Trouble bring together 35 years of medical practice with the input from dozens of workshops he’s given around the country. He believes that all of us– healthcare providers, patients and families–bring our own wounds to an illness, hoping to learn, to teach, and to heal one another. Excerpts from Healing Through Times of Trouble are being published with the kind permission of PublishAmerica. For more information, log onto: www.publishamerica.com. If readers have any questions or comments or wish to share their own stories with the author, he may be contacted at: [email protected].
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