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The Lesson of the Gift
James E. Johnson
My father lives this crisp February morning in the same way that he does the morning, afternoon and evening of every day of his life. He struggles from a bed to capture with broken lungs enough air to take another breath. The air he breathes around the clock is always enriched with oxygen, yet he struggles. He is 92 and fighting hard every hour to live another day. Pulmonary fibrosis has taken its toll, eroding the capacities of a body that has traveled through nearly a century of human history—a rich and vigorous life.
My father lost his own father to an infectious disease on July 18, 1917. It was my father’s first birthday so he grew up with his siblings in an orphanage that became overfilled with parentless children by the great influenza pandemic of 1918. His growing body developed a strength tempered by struggle. As a teenager he weathered the dark storms of the Great Depression and as a young man he endured the hellish island invasions of the South Pacific during the Second World War. He supported and nourished three more generations after the Great War. Now the body that served him well strains and puffs like Bogart’s boat, the African Queen—tired, decorated with barnacles and broken, it struggles to keep the engines running while moored without power to a nursing home bed.
I am my father’s son. His journey has been part of my history and now, as we finish his closing chapter together, part of my own story. I have matriculated into a new education in recent years, a graduate school for the enhanced study of life. Through my father’s story and through my own most recent passage, I am beginning to learn in new ways how life is not an “entitlement” but instead a gift. Of course others—wiser teachers—have been telling me this all along from childhood. I now know that I never really heard them clearly and I do not think I really could have fully understood them until now. You can marvel over the beautiful, majestic prints taken by Ansel Adams of Half Dome or El Capitan; you can find their GPS coordinates in the Yosemite and verify the satellite images from Google Earth. None of that can give you the experience of standing there at dawn when the sunlight pours like a mighty river through that great valley to convert the nearly one mile of vertical granite into a golden cathedral. You cannot clearly see the richness of life until you have begun to face the poverty and deprivation that accompanies chronic disease and death.
These new lessons have begun to change my life at work. For many years, we have had patients and their families share their encounter with infirmity through Q&A sessions with preclinical medical students. In these stories students travel to places not found in the dissection lab or otherwise approachable from PowerPoint lectures in room E-24. A patient with cystic fibrosis named M.A. is especially memorable to me, both as a friend outside of work and as a life teacher. He donated time every year to speak to beginning medical students. M.A. lived a simple life dependent upon a fixed income from disability benefits. I knew him from a men’s group at my church that meets regularly every Tuesday morning at 6:30—men celebrating life together over breakfast. When he spoke with medical students, young people positioned for a prestigious profession in the prime of their life, he nearly always began by apologizing that he felt strangely sorry for them and could only wish for them the beauty he saw every morning. He spoke with a humility empowered by vision, a view not found through the oculars of even the best of microscopes.
Each morning was a genuine surprise for M.A., a fresh and unexpected gift. He was living life in small bits, day by day, and this continued for many decades. He had survived beyond the life expectancy of a typical CF patient through the rigors of treatment that included multiple lung transplants. From his perspective, he was always playing in the excitement that comes with taking the buzzer beater shot in multiple overtime periods—each day a new adventure. The first-year students often seemed to him to be instead focused on the stress of making the team and wondering whether, if they did get a uniform, they would also be getting enough playing time or capturing big headlines. Through the generosity of his life and the richness of his daily relationships, M.A. continually enriched the lives of others around him. His story momentarily broke through the daily grind of students self-absorbed in the obstacle course of basic science and gave them a grander vision of how even the rigors of medical school are to be experienced as a precious gift and received with gratitude.
These lessons from M.A. were brought home to me in a fresh way through my own brush with infirmity three years ago. My wife Mary had planned a fantastic dinner party to honor her parents on their 60th wedding anniversary—an anniversary that dated back to Valentine’s Day, 1946. The party was to be held on a Saturday night at her hometown country club that was located three hours from Winston-Salem. I was enthusiastic about this extended family reunion but I became abruptly ill at the home of my parents-in-law on the day of the celebration. My lower back was hurting enough that I was forced to lie on the floor to achieve some measure of relief. As the day wore on, the pain increased and became spasmodic, intense, rhythmic and frequent. The entire family reluctantly left me in the evening to attend the party while I writhed on the floor in pain. At that time neither I nor anyone else had any notion of the scope of my illness.
Later during the night, I began to become concerned about the possibility of an obstructive renal calculus or even renal necrosis. At 4:30 a.m., with everyone else sound asleep, I finally took desperate action and called my adult sons to carry me supine and in pain to a waiting car. My anxious wife then drove me through the early morning back to Winston-Salem and we arrived around daybreak on a quiet Sunday morning at the NCBH Emergency Department. During the next week in the hospital, I became increasingly ill. I was unable to move without pain and was eventually hospitalized for 31 days. By the end of the first week a bacterial abscess was found within the scar tissue from a previous lumbar disc surgery and blood cultures eventually revealed an emerging case of streptococcal bacteremia. The abscess was apparently derived from organisms originating from a dental root canal a decade earlier which had, in turn, progressed more recently into a maxillary alveolar abscess that required a molar tooth extraction—all of this over a month earlier.
I had been treated at the time of the tooth extraction with Penicillin VK and the procedure went well without any obvious complications. Apparently at least some of these bacteria had managed to hide and flourish within the relatively avascular and immunoprivileged scar tissue around my spine. The abscess held me tightly in its grip and my body was repeatedly locked in waves of painful spasms. A PICC line was put in place for antibiotic treatment and with time I gradually improved so that I could be moved to inpatient rehab at the Sticht Center. Through the continual patient and caring help provided each day by the PT and OT therapists, I was eventually able to sit in a wheel chair, overcome nausea and pain, gain strength with exercise to build back the muscle loss from sarcopenia and finally start the long process of walking again. It would take many months of rehabilitation before I would become functional at work. Notably, in less than one year’s time, I was in the CT Surgery OR to have an aortic valve/aortic root replacement due to an aortic aneurism that had developed rapidly as a sequel to my septic event. However, the professionalism and quality of care provided by the CT surgical team and the ICU staff was incredible. The open heart surgery was a breeze and the rehab was quick and relatively easy compared to the problems with the prior abscess and sepsis.
While I would never choose to pass through such experiences again nor recommend that path to anyone, I can quickly say that the time I spent infirmed or in recovery during the last several years has been the greatest gift of my life. During that painful ordeal, I experienced a new dependency upon God and a deeper intimacy in my trust in God through continual prayer. As it was for M.A., life came to me during that first week of pain in very small bits of time—sometimes, I prayed to only endure the mounting waves of a fierce storm, one wave at a time, a few seconds to get through one bout of pain or nausea or both and then for the endurance required to continue on again each minute of each hour of each night and day. This is the school of abundant life: living in dependency upon God for everything.
While at work in the dissection lab, I have examined and known the congenital malformations, pathologies and broken parts of literally thousands of people—people who I did not know in life but came to know as my teachers through their death. What has always been surprising to me is not that our bodies become infirmed or diseased but instead that we live as long as we do and as well as we do. This is to me surprising given the integrated complexity of the body systems as well as the demands and the pathological challenges we place upon them day after day and year after year. I have never been one to say “why me” or “why now” but I have instead continually marveled at how spontaneous, how sweet and how surprising life can be. Good health and long life are not an entitlement—not for us nor for any other creature. Life is a struggle. Sustaining it becomes hard sooner or later for all of us if we live long enough.
I have learned anew that each moment of each day is a gift. My time in that bed was a time to remember how blessed I was in the opportunity to trust my creator for each moment served up. I was crushed but I was blessed and I was certainly not forgotten. Time and time again I was blessed through the actions of individual women and men who cared for me in Ardmore Tower and in the Neuro Rehab floor of the Sticht Center. In those first few weeks, they rolled me regularly to preserve my skin and to prevent the development of decubitus sores. They bathed me, they held my hand, treated me for pain and encouraged me. They collected my fluids, gently moistened my dehydrated tongue and lips and carefully nursed me to drink and eat. They did for me what I should be able to do but I could not provide for myself. Many of these people were not only doing a job, completing a shift—they were tenderly and thoughtfully caring for me. NCBH has all types of people but you should know this from someone in a position to know: it is a wonderful place populated with many wonderful people. There were CNAs, technicians and custodians who completed their assigned tasks and also took the extra time to express care and concern for me.
One nurse, P.C., was an angel of light in a time of darkness. On my first night in the hospital, she literally held me and soothed me as I struggled from pain immobilized in bed. Her healing touch, her caring voice and her experienced professional care were all therapeutic. She had me for only a couple of nights and then she was off work. While she was on vacation with her husband at the beach, she called my room to encourage me. I was blessed by that woman—she was and is in every way a gifted healer. My medical students, current and former, cared for me. They were concerned for me and many prayed for me. My attending physicians were attending me with comprehensive care. Many would take time to see me and care for me, one additional last time at night before they went home to be with their families. It is a powerful experience to become dependent upon a colleague and friend and to know the depth of their compassion and the height of their professional care in a way you never could at work—a way only made possible by lying in bed, in their care.
Every night of every week, a man from our men’s ministry at church would care all night for me. Each man would commit to take a night, first sitting, sometimes reading quietly at my side, and then as much as possible sleeping in that same chair until morning came. The next day brought another brother, night after night, week after week. I can remember someone on the Ardmore staff commenting to me one day that they had never met someone with so many brothers—brothers from a different mother.
I now know better, and I now know more completely what I have always incompletely known. The world and its people are broken. The good news—the great news—is that we have not been abandoned as orphans—our creator is not far off but instead very present and very active in setting our broken world right. Our call is to enter into that healing project. We are broken but we are not forgotten—we are blessed, blessed by many and blessed in many ways. I now know in a new way that the creator has chosen to be present even within creation, even within humanity. My experience has taught me that God is as close as that person who we quickly pass by at work without eye contact as we hurry through our lives propelled by tasks and further accelerated by our limitations. The creator is present, as near as that imprisoned person held captive by a bed on the fifth floor ICU or the ACE unit in the Sticht Center. Closer than we may think or remember. |