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Stories and Struggles
By Ellen Richardson
Church Publishing IncorporatedCopyright © 2017 Ellen Richardson
All rights reserved.
They did not ask, "Where is the LORD, who brought us up out of Egypt and led us through the barren wilderness, through a land of deserts and ravines, a land of drought and utter darkness, a land where no one travels and no one lives?"
— Jeremiah 2:6
Several years into what I thought would be a lifetime career as a rural family physician, I came to believe that much of what was brought into my homey solo practice and laid into my lap over the years was a kind of suffering for which I did not have a ready balm. There was physical illness to be managed to be sure, and I tried to offer advice and guidance to help my patients stay as healthy as possible in the face of burdensome illness. Most of my energy, however, was consumed by trying to care for problems of a more challenging sort. The joyful office days were filled with well babies, routine check-ups, medication refill visits, mild contagious diseases that got better, and good catch-up conversations usually about hunting, fishing, upcoming holidays, or grandchildren. The harder days were marked by a pervasive sense of brokenness: patients who could not manage to take their medications, check their blood sugars, get any sleep, leave abusive relationships, stop smoking, or even attempt to exercise. Their chronic conditions provided the diagnosis code for their visits, but it was the headaches, the back pain, the chronic coughing, and the indigestion that brought them in. The underbelly of the presenting symptoms was lined with grief, sorrow, loneliness, depression, marital and family discord and dysfunction, alcohol or drug addiction, troubled children or grandchildren, difficulty on the job or unemployment and financial distress, or just the mounting weight of being overwhelmed with life as they knew it.
I could offer a medical test, a prescription, a referral to a medical specialist or a counselor, and a sympathetic ear — mostly they came in to be listened to. I began to see that all my sincere offers of insight, context, and perspective fell short of the mark, and that I was not really able to help in any fundamental way; I could not make them better. Opportunities to explore root causes of psychosocial distress were generally declined in favor of a search for root causes of physical illness, so instead of being able to offer healing, I offered blood tests, CAT scans, prescriptions, and referrals. The search for a "real" diagnosis, the identification of the precise place where the body had failed, became the focus of attention. With due diligence I used all my powers of knowledge and experience to find a disease, to give it a name, and to access every means, therapeutic, pharmacologic, or technologic, to eliminate it. Still, most of the time, I could not make them better, if better meant wholeness of body, mind, and spirit.
And then, some of them got really sick. Sometimes it was that chronic condition suffering for lack of attention that got away from them. The high blood pressure became the heart failure became the kidney failure or stroke. Sometimes it was the unexpected "out of the blue" rare disease — usually cancer — that rocked their worlds in that "I never thought it would happen to me" way. The nature of the threat would call for a specialist; I would refer the patient, and then be relegated to the side wings of the stage while a stronger magic was sought for and delivered by "experts" whose authority and credibility increased with the geographical distance from my small town. Patients whom I had considered "mine," in my small primary care practice, belonged for a time to the specialist(s), and while they suffered every effort to prolong their lives threatened by terminal disease, I waited for them to come home.
Usually they did come home, and some of them taught me something remarkable about dying that I had never learned in medical school or training. When all medicines and treatments had run their course and were exhausted, when patients were often the most uncomfortable, the most weak, the most anxious, and the least able to maintain their defenses, an unbidden grace would surface, creating openings in their lives and relationships, making room for repentance and forgiveness, and for healing — even as their bodies were failing.
Where did that grace come from, and what was it about the project of facing death that called it forth? Which people paid attention to that grace and which ones denied and declined it? What was it that allowed some people facing their final weeks and days to finally see what was important in their lives and to attend to their unfinished business? What kept others from this path that seemed to lead to a spiritual peace in the setting of a failing body? What was I missing in all my efforts to "doctor" my patients? I wanted to harness this healing power and offer it to everyone who was struggling, as if I could write prescriptions for grace, repentance, or forgiveness.
My identity as a physician slowly evolved through the many stories in my career from one of director of the production, as I believed myself trained to be, to one of witness and companion to those who suffered. I suppose this shift in identity smoothed the way to the eventual transition from doctor to priest. At first this was uncomfortable, and encompassed an acknowledgement of failure to really fix things, for I was long and dutifully and expensively educated for many years of my life to do just that — fix things. Over time and experience, especially with dying patients, I saw that "fixing" role begin to unravel; I stepped back for a wider view, and began to un-learn what I thought I knew about healing.
One of my earliest teachers was Robert; he was my first-ever hospice patient. A transplant to the Deep South, a child-follower who after retirement moved from Chicago to live with his daughter and the sweet Southern boy she married. Robert was intelligent and feisty, thin and polished and a fish out of water, but the family bond was strong and Robert's daughter and sonin-law brought him into their home.
Robert had a delightful talent with skills he had honed over years of his life. He created tiny panoramas inside eggshells — whole miniature worlds inside eggs of all sizes from every imaginable species of bird or fowl that had laid them. Every one I saw was an exquisite work of unimaginable patience and skill; some of them even included tiny artificial lights inside the finished tableaus, running off of tiny batteries. These were no seasonal bunny cutouts in sugared shells; these were works of art and craft like I have never seen since, except in a museum.
Robert had enjoyed his retirement and practicing his art in his daughter's home, which had been remodeled to provide a studio filled with stacks of tiny drawers filled with the miniscule objects he placed inside the eggs and around the edges of their openings. He was a gracious person and was generous in showing off his treasures and works-in-progress. He had been blessed with good health and had stayed active and trim for much of his life, most of which was spent working in automobile manufacturing plants in Michigan. When he began to develop symptoms that lead to a diagnosis of a stage IV cancer with a prognosis of less than six months, I would have expected one so committed to the smallest details of his art to have researched and attacked his cancer with the same diligence. I would have expected him to find a specialist to guide his pilgrimage towards healing himself of this intrusive and objectionable interruption in his life, just when he was beginning to really enjoy retirement and make new friends.
Robert did approach his cancer with attention to details, but without the shock and subsequent emotional desperation that was familiar to me. He kept himself aware of his disease progression, was particular about his symptom management, and would only accept disease-directed treatment that had great odds of helping him, and small odds of making him miserable; he said yes to radiation, and no to chemotherapy, which in his case had little chance of offering him extended time with the quality of life that he wanted. Instead, Robert concentrated on who and what he loved and conserved his energy for his art. He got his affairs in order, talked openly about dying, and became a pioneer patient in a small south Georgia town for a new medical service called hospice. He went about bringing to life those ideas still in his imagination — unfinished work in eggshells of every size and shade of ivory that sat still in their pristine forms, like blank canvases cushioned in straw. He worked in his studio every day, until he was too weak from his illness to sit up for long. When he began the dying phase of his illness, he was calm, at peace, and full of gratitude for his life.
I do not remember Robert using language that was particularly religious; I doubt if he ever used the word "healing," and yet he saw his life as part of a greater context in which he was only a part, and not the central fulcrum. I do not remember any stories he might have told about his life before I knew him, though I am sure he carried as many stories as most of us. He did look forward to reuniting after his death with people he had loved who had died before him — his wife, and a brother. I do remember that he did not seem to be afraid of dying, something that was rare at that time in my professional life and experience.
Robert, and many who came after him, taught me that healing was not something I was to conjure up and present to my patients, but something that comes from within each person. Healing is not rendered in the pursuit of the diagnosis, or the treatment of it, as my doctor brain had been trained to believe. Healing comes from the heart of one who is open to believing in something greater than self, one who sees the cycle of human life as part of a greater whole, one who believes in "a God who is merciful and gracious, slow to anger, and abounding in steadfast love and faithfulness" (Exodus 34:6). As I have grown in my understanding and authenticity to speak of spiritual matters, I have come to believe that healing is the breath of God that falls on each of us, just as the sun and the rain. It is a mercy that is not wanton or wasteful, but waits for each of us to recognize its presence when we need it most, on those harder days when hopelessness and brokenness seem to be the order of the day. This healing is that thing we are all looking for and do not know it. It is that thing that makes the difference — not between living and dying, but between dying in stress and anxiety and dying in peace.
How can we recognize healing in ourselves and in others? Is healing something that we can promote or just recognize and accept? Does it require specific requests in prayer? How can we embrace an understanding of healing that is deeper and more powerful than just restoration to a life without illness or brokenness?CHAPTER 2
Take Me Home to Die
The sparrow has found her a house and the swallow a nest where she may lay her young; by the side of your altars, O LORD of hosts, my King and my God.
— Psalm 84:2 BCP
Much of the life of a small town doctor is like any other life: a balance of home and work, schedules and schedule adjustments, routine and crisis, frustrations and satisfactions, and relationships, both professional and personal, most of which are connected to other relationships. In my solo family practice the wonderful people who ran my office knew everyone in our town, who they were married to or related to, and sometimes who they used to be married to, and this gave me not only a needed heads-up with my own patients, but a deeper appreciation for how complexly woven any one life could be. It was my great joy to care for newborn infants and great grandmothers, siblings in preschool and siblings who were grandparents themselves. Family was a concept that extended far into the community, encompassing partners, neighbors, long time coworkers, church members, in-laws from long-dissolved marriages, and assorted indefinable relationships — from the previously estranged offspring to the long-term paid household helper evolving into compassionate caregiver.
I had always made home visits to see patients since first introduced to the idea in family practice training. Unfortunately this practice of visiting patients at home has become rare, as the constraints of time and economy do not make home visits practical. It is also understandable that some people might decline home visits for reasons of privacy. However, for someone ill and unable to be transported by caregivers to a clinic or office setting for non-emergency care, a home visit was a convenience to the patient, and in most cases a great blessing of hospitality to me. These visits on the patient's turf are naturally more patient-and family-focused than can be accomplished on "health care" turf. They can involve family pets, curious toddlers, and almost universally the competition of the television playing in the background. At home, it is easier to see caregiving challenges, including the physical barriers to safe care that might be overcome with options outside of the family's imagination, or that might not have been mentioned in the office visit, for fear of making the patient feel a burden on her family. A home visit is also a more open window into the person who is distilled in the medical office to "an appointment," expediently represented by a chart of medical history and lab values. At home, the old photographs on display, the handmade quilt on the bed that was handed down from a great-grandmother, the flower garden and bird-feeders outside the window, the offer of a cup of tea, all become gifts to be opened to a deeper understanding of who it is that needs care, and how that care can best be offered. I have visited homes where I was expected to remove my shoes at the door, and had a sense that I was contaminating a pristine environment; I have been in homes where I quickly sized up whether it might be safe to sit down on furniture that looked salvaged from the side of the road. Mostly, I was welcomed, and honored to be invited in.
Home is a concept with profound cultural and religious significance throughout the ages; the place where we take our rest from the world, where we prepare, eat, and even grow our meals, where we keep our stuff, and when asked, where the majority of Americans would choose to die. Home can be a quiet sanctuary, or a loud, crowded multi-generational, multi-language dwelling full of siblings, cousins, babies, animals, and elders. Depending on our social and economic privilege or our cultural orientation, home can be a place of permanency and identity, or a series of spaces we take on and discard along a grander plan of work or progressive prosperity. To an immigrant family, home can be two rooms in the basement of a distant relative or acquaintance. To the elderly who can no longer care for themselves, home can be the space between a hospital bed in a shared room and a wheelchair in the hall. To the homeless, home can be something irretrievably lost. Our history, experience, and memories of home have much to do with how we think about being home in this world, and how we think about our hope for an eternal home with God.
Our biblical stories offer a spectrum of concepts of home. Eden was the perfect home from which Adam and Eve were banished for wanting more than everything they needed. Noah made home in a boat, a crowded place of redemption. The people of Israel longed for home through multiple episodes of exile, willing to follow Moses for a generation in the desert to get to a home they believed was chosen especially for them by God, a promised land that was already a home to others. In the earliest gospel story, Joseph and Mary made a home for their newborn Jesus in a stranger's stable and then fled to make a home of safety in Egypt, away from family, friends, and the familiar. In the last years of his life, Jesus moved in and out of Galilee, and spent his ministry being taken into the homes of others. In one of the parables told by Jesus, home is the open arms of a father running down the road to greet his prodigal son.
Home, in our story as people of God, is more than a place of refuge or identity; it is the place where we are most aware of God's presence and guidance, and most accepting of God's love and protection. At times in our journeys, the earthly structures and shelters in which we live, work, and worship, however humble or grand, can represent this place for a time. Sometimes we have only our own bodies to call home, wherever they carry us in health or in sickness. Within us we carry always the deep mystery of the Child called Emmanuel, "God with us," who knew only a manger in which to lay his head.
Excerpted from Holy Dying by Ellen Richardson. Copyright © 2017 Ellen Richardson. Excerpted by permission of Church Publishing Incorporated.
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Table of Contents
ContentsIntroduction Hospice Stories,
1. Harder Days,
2. Take Me Home to Die,
3. Why Me?,
4. Are You Just Going to Let Me Die?,
5. Ruler of the Heart,
6. Please Leave Me Alone,
7. The M Word,
8. I'm Going Home Tonight,
9. I Don't Do Kids,
10. Not Dead Yet,
11. I'm Not Ready Yet,
12. Promise Me,
14. How Long Is This Going to Take?,
15. Hazelnut Coffee,