Beginning Again
Benedictine Wisdom for Living with IllnessBy Mary C. EarleMorehouse Publishing
Copyright © 2004 Mary C. Earle
All right reserved.ISBN: 978-0-8192-1965-7Contents
Chapter One
Introduction * * *
It is September 1995. Home from the hospital, I am trying to figure out who in the world I am now. I have survived the initial crisis of an attack of acute pancreatitis. I stay in bed most of the day. I very slowly gain some strength. Some days I can eat without ill effect. Some days I cannot. Every pattern to which I have been accustomed has been completely disrupted. Before the pancreatitis I was a healthy, active, engaged woman—a wife, a mother, an Episcopal priest, a spiritual director, a writer. In a matter of hours all of those identities were turned inside out and upside down as the acute pancreatitis kidnapped my life as I knew it.
When pancreatitis moved through my life like an earthquake, the recovery period left me sufficiently weakened that I found it difficult or impossible to keep the established patterns of my own spiritual practices. I was accustomed to doing yoga, keeping a journal, reading scripture, and praying every morning. At the age of forty-six, I had also begun paying attention to nutrition, exercise, and leisure as part of my own intentional plan for living. All of this was shattered by the acute illness. I barely had the energy to lie on the couch and watch a movie, much less get up and pray. Much of my waking life was dedicated to a daily education about nutrition and the difficulties of living with a weakened pancreas. (My doctor had said, "Of all the organs in the body, the pancreas is the most mysterious. We really don't know exactly how it works.")
In those first months of recovery it felt as if my life were over. I had a lot of grieving to do, grieving for a life that was lost and for a body that was afflicted. I also succumbed to the prevalent cultural notion that once illness has visited like an unwelcome guest and has, in fact, changed from being a guest to a resident, your life is over. On the one hand, this is true. The life I had once lived was now irrevocably changed. My seemingly endless energy had evaporated like dew in the sun. My omnivorous appetite had to be confined to the simplest of diets, the smallest of portions, and even then I would often break out in a cold sweat from the labor involved in digestion.
It seemed that a life with boundless horizons had been reduced to a life of one limitation after another. Some days I felt as if I were turning over rocks in a dried-up streambed, looking for signs of life, only to discover more rocks. The fact that the ailment was pancreatitis made things more difficult in some ways. "Pancreatitis" is hardly a household word. I had to educate myself about the illness, about the recovery, about the chronic aspects of the ailment. When I was in the emergency room and the doctor informed me that I had acute pancreatitis, I had to ask where the pancreas was. I had hardly been aware that I had a pancreas, much less that its malfunction could create so much havoc.
All of these limitations affected not only me but also my whole family. My husband, Doug, had to assume many of the household duties. A good cook, he had to learn what I could eat and how it had to be prepared. He, too, lost his life as he knew it. A lot had to be renegotiated in terms of the marriage. On the one hand, the words "for better and for worse, in sickness and in health" took on a depth of meaning we'd not had to know before the illness. On the other one, the daily discovery of my own real weakness caused us both stress and distress.
I had to drop out of a doctoral program in which I was enrolled and curtail many activities. Travels, retreats, teaching opportunities—all had to be forsaken. As the months passed, the weakness deepened as I continued to lose weight. CT scans, ultrasounds, and blood tests did not show evidence of malignancy. Finally, we discovered that my body was failing to metabolize my food. Though I was eating, my body was not absorbing the nutrients. I was losing weight, my skin and hair were drying out, my vision was blurring. I'd managed to develop a vitamin deficiency because of the malabsorption difficulty.
Many of you who are reading this book have suffered far worse than I. Many of you have lived with people whose lives have been completely altered by illness in one of its acute, chronic, or progressive forms. You know that living with illness is the reality. The illness is not likely to disappear. In fact, it becomes a major defining force in daily life. The illness comes with limitations and distress, with diminishments and loss. In the predominant culture of the United States, this is often construed to mean that whatever life might look like with illness, it is not lively. Nor is it creative. The possibility that it offers strange gifts under the guise of limitation is unimaginable. And it certainly could not be spiritual! Such are the prevailing misconceptions in our culture.
Living with Illness and a Rule of Life
For years before becoming ill, I lived with a simple rule of life. A rule of life, a simple monastic concept, helps us to become more mindful of divine presence throughout the day, in all persons and in all circumstances. The word "rule" is derived from the Latin word regula. It connotes guidance and wisdom rather than a rigid code. To follow a rule is to walk "in a path of life" (Psalm 16:11). A rule, like a path of life, is adopted and learned over time. It is not internalized all at once. It requires steadily putting one foot in front of the other (at least metaphorically) in order to reach the destination.
My own pre-illness rule of life was influenced by both the Cursillo movement and by the Rule of Saint Benedict. The former, a renewal movement that emphasizes a life marked by prayer, study, and action, began to have an effect on me after I attended a Cursillo weekend in 1979. At roughly the same time, I became aware of the Rule of Saint Benedict, an ancient rule of life dating from the sixth century. This rule, or guide for Christian living, emphasizes a life marked by prayer, holy reading, and manual labor, with vows of stability, obedience, and ongoing transformation and conversion. The Rule of Benedict is grounded in the practice of listening deeply to God and to all of life. Benedict also invites us to prefer nothing to Christ. With common sense and gentleness, Benedict provides for life in community that respects the young, the ill, and the elderly. His is a vision of shared life in Christ, with every member of the community seeking God. At the same time, his Rule is grounded in daily reality. Benedict addresses areas as simple as the tools of the monastery, clothing, food, and how to treat guests. The Rule, as Benedictine sister and author Joan Chittister explains, "simply takes the dust and clay of every day and turns it into beauty." While we don't know a great deal about Benedict, we do know that he was born around 480 C.E. to a fairly well-to-do family. He lived in Nursia in Italy, during a time of intense upheaval in Europe. Rome itself had been invaded in 410 C.E. by tribes from the north of Europe. Much that had been known and trusted within his society had been destroyed by ongoing warfare. Benedict studied in Rome, but became disillusioned by the behavior he saw in the city, so he dropped out of school and left the city. From there he went eventually to Subiaco, where he began to live as a hermit in a cave. As word of his devotion spread, others came to be with him. As that community grew, he founded twelve small monasteries in the surrounding area, communities that needed some structured way of living together. His first attempt at drafting a rule of life for the community provoked rebellion; his followers turned on him and even sought to poison him! Benedict left Subiaco for Monte Cassino, where it is believed that he wrote the Rule as we know it. He drew on other rules that were already known, creating a pattern for communal life that emphasized balance and moderation.
The Rule of St. Benedict is full of homely and practical wisdom. Joan Chittister has commented, "If we are not spiritual where we are and as we are, we are not spiritual at all." Benedict s way of living is grounded in reality, in daily life, in care of the body and respect for one another, in the intersection of the commandments to love God and love our neighbor as ourselves. As we begin to reflect on living with illness as a rule of life, Benedict s counsel offers some direction and humane encouragement.
My own rule, before my illness, revolved around myriad activities and varied interests. I prayed and read scripture daily. I tried to live a reflective life that noticed God s presence in the daily minutiae of life with teenage sons, work as a parish priest, marriage to a priest. I was finding new avenues for outreach ministry, interviewing clients at an ecumenical hunger ministry, and becoming involved in interfaith dialogue. Gardening and yoga were also part of my rule. Those simple patterns for putting God at the center were very important to me. And they were completely disrupted and torn apart by the illness and the terrible, slow recovery. I had to begin again and find a new way of ordering my life. I had to take into account a severely weakened physical condition. A whole host of new behaviors needed to be practiced—everything from regular rest to meal planning to having blood tests. Slowly, over the months of waiting for healing, a new rule began to emerge. This was a rule that began with the restrictions caused by the illness. This was a rule whose parameters were determined by a life lived within new limitations, limitations that made me want to rebel, to cry, to give up. Surprisingly, those same limitations became the raw material from which a rule could emerge, once I was guided to see them from a different perspective. I started to apply some creativity and prayer to the enterprise of reshaping my new life.
As I did this I realized that the illness itself provided the grounding for the new rule. My body, now foreign territory to me in its thoroughly depleted condition, offered the place from which the new rule could grow. Very slowly, I began to see that the rest that the doctor recommended could be one piece of the new rule. The highly restricted diet could be another. Regular ingestion of prescribed medications—something that was tremendously difficult for me in the beginning—became a kind of prayer of the hours. Taking those medications several times daily required a sort of concentration and attention that seemed almost like listening prayer. The rhythm of a day punctuated by times of taking pills was oddly reminiscent of a day marked by praying Morning Prayer, Noonday Prayer, Evening Prayer, and Compline. The living God who is with us in all circumstances and through all passages began to be surprisingly present in these altered patterns of daily life. So, the rudiments of a new rule of life began to appear in the midst of the wreckage of a life shattered by acute illness. Those rudiments were found in the living with the illness, in the daily recognition of myself as one weakened and afflicted, yet also upheld and sustained by God.
Beginning Again, Again
The illness forced me to rethink my daily routines and how I live my life. I had to begin again. Since the original attack in 1995, I have had to begin again several times. The fall of 2002 was plagued by sudden flare-ups of pain and concluded with a procedure to open up a restricted duct that was clogged by scar tissue. Most of the plans I'd made for those months were discarded. The recurring bouts of pancreatic disturbance took precedence over any plans, and everything else had to be rearranged. Beginning again, yet again.
Living with illness is definitely full of surprises, punctuated, sometimes, by setbacks. It is also an ongoing lesson in flexibility, resilience, and perseverance. From the vantage point of my mid-fifties, it seems to me that living with illness offers an intensive course in the rule of life. Illness clarifies what really matters, what is worth spending time on, what is essential. Mid-life offers that course to almost everyone over forty; living with illness focuses and concentrates that instruction. In some ways living with illness reminds me of taking an intensive Italian class in college. Class met every day, and only by showing up for class could we learn the language. Living with illness puts you into the same kind of intensive learning situation. When you "show up" by paying attention and becoming more aware of the shape of your life with illness, you begin to learn the new "language."
At this point in my life, I live with a pancreas that has healed to a certain extent. I am still taking medication, still following a particular dietary regimen, and am still afflicted from time to time by pancreatic pain. I have also been working with some groups of people who live with illness. Several years ago in a class I taught at St. Mark's, my Episcopal parish in San Antonio, I suggested that we begin to look at the limitations and diminishments of illness as the beginnings of a new rule of life. At first, the participants were jarred by the idea. How could illness be a rule of life? How could these various indignities and limitations have anything to do with vitality, with liveliness, with choosing life? How could God be at the center of living with the diminishments of illness?
Together we began to "re-frame" living with illness. We named our various limitations. We listed the "givens" that each of us lived with. These varied from person to person, from illness to illness. The person whose diabetes required regular insulin injections and checks of blood sugar had different limitations than the person whose five years of coexistence with a lymphoma had resulted in yet another experimental protocol of chemotherapy. Each "given" traced the outline of life with a particular illness. For example, the dietary routine of an insulin-dependent diabetic gave her the frame from which her rule began. The man recovering from a stroke discovered that his regular physical therapy was the foundation for his rule. These "givens" that come from living with the illness were the building blocks for a rule of life. Each "given" also proved to be the starting point for reflecting anew, for finding a rule of life in the midst of the ongoing rounds of tests, exams, hospitalizations.
After the class had met for several weeks, one participant remarked, "This is beginning to give all this mess some meaning." Redefining the illness led to looking for ways to choose life in the midst of daily physical distress. We were not trying to deny the fact of illness, nor to paint the experience with Pollyanna-pink tones. But we learned that even within the "givens" of living with illness, there was a lot of rich variety. One woman confined to a wheelchair said, "When I started paying attention, I realized that people talk to me now about their own difficulties. I don't necessarily go looking for them. They see me and I'm not so threatening. I'm less lonely now than I was as a healthy person." A man with a progressive illness realized that the illness had helped him see the extent to which his work had become a very controlling idol. As he let go of the demands of work because of the greater demands of his body, he realized the illness had been a kind of salvation. It led him to let go of work as an idol and helped him examine other values he held in his life.
If you are living with illness, this book offers some suggestions for transforming the way you perceive the limits that your illness may place on you. While acknowledging the hard losses that many face when illness overtakes their lives, this text is also written with the conviction that living with illness offers an opportunity to begin anew. That does not mean it is easy. Nor does it mean that living with illness is a happy experience. It does mean that out of the wreckage, piece by piece, with companions along the way, we can begin to discern life that is rich, vital, and real. It may not look at all like the life that we lost. Yet it does have its own singular meaning and character—even beauty—if we allow ourselves the time and patience for discovery.
In the first part of this book, I will reflect on the pattern of dying and rising to new life that is the pattern of Christian baptismal life. In the chapters that follow I invite you to join me in reflecting on a variety of aspects of living with illness—nutrition, rest, exercise, medications, treatment. If one of these chapters doesn't apply to you, feel free to skip it. Choose what is appropriate for your own life, for your particular illness (or, if you are a caregiver, for your own life with this person who is suffering from illness).
In the third section we will look at the three vows of the Rule of St. Benedict: stability, obedience, and ongoing conversion. These chapters offer suggestions about the ways that the vows monks and nuns take might apply to living with your illness. Each chapter ends with suggestions for reflection and with a short prayer. If you intend to follow the suggestions for reflection, I would recommend that you have a journal at hand. Any kind of journal—from a spiral notebook to a fancy blank book—will work fine. Those of you who decide to try some of the suggestions that include an artistic response will want to have crayons or colored markers and some blank paper at hand. I prefer to use a spiral-bound sketchbook with blank pages that allows my writing and art to be in the same journal.
(Continues...)
Excerpted from Beginning Againby Mary C. Earle Copyright © 2004 by Mary C. Earle. Excerpted by permission of Morehouse Publishing. All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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