More from Mary Earle on Living with Illness

- Is God Present in Illness?

- Broken Body, Healing Spirit

Mary C. Earle

author of Beginning Again:
Benedictine Wisdom for Living with Illness

Mary C. EarleHow can Beginning Again help the person suffering from the pain and debilitation of a serious illness?
When I got sick in 1995, one of the first awarenesses that came to me was that my life would never be the same again. I literally had to begin again. I had to start over--start over with trying to figure out my new identity, and start over with the co-creative endeavor with God to discover life giving ways of structuring my life. Over the years, I had been reading and practicing the basic wisdom of the Rule of Saint Benedict. On an intuitive level, the wisdom of that way of living began to inform how I thought of my life after acute pancreatitis. My hope is that Beginning Again will offer to others some of the common sense and basic life wisdom that Benedict gives us, whether we are sick or well.

On the one hand this book is down-to-earth in its practicality. On the other, it is informed by Benedict's sense that how we live in our every day lives has everything to do with our physical, emotional and spiritual health. It is a book about taking small steps, knowing that life is a process, finding friends who will walk in the way of illness, and growing in the ability to be honest.

What do you say to the ailing person who asks, "Why me?"
My older son Bryan is recovering from surgery to remove a malignant brain tumor, and is now undergoing radiation. He has asked that question with wrenching honesty.

First, this question is bound to surface and needs to surface. It is a question that we have to wrestle with, though ultimately I think one can't answer the "why?" There may be clear reasons, for example, a long time smoker might develop lung cancer. But that is only one of many different layers to the "why" question.

On the other hand,facile answers to the "why" question are dead-ends, and can create even more difficulty with negotiating life with illness. When I had another round of acute pancreatitis in May, a friend said to me, "You don't deserve this" (a variation on the "why?" question). To me, that comment implies a kind of a god I cannot believe in, a god who has nothing better to do than sic illness on unsuspecting people in order to teach them a lesson. I have a sense that reality is much more delicately webbed, much more intricately layered than we would like to believe. Simplistic notions of causality are spiritual dead ends.

As my family spent fourteen days with Bryan in the Neuro ICU in August, we became, yet again, acutely aware of the co-suffering of all humanity. We were surrounded by families fervently praying for loved ones Neuro ICU, and the waiting room became a place of real community. We traded prayers, in English and Spanish, and shared stories of the day. The older I get, the more pastoral experience I have, the more time I spend in doctors offices, it seems the question may be "Why not me?" One day as we took Bryan from his ICU bed to the radiation treatment, we were joined in the elevator by a mother and her young son who was clearly being treated for cancer. My husband and I exchanged one of those looks that over thirty years of marriage creates--a look that says, "We are all in this together." We discovered later that we had both immediately been led to pray for that mother and son. As wrenching as our experience has been as Bryan has gone through two surgeries, a long hospitalization, and now radiation, we are very aware that other parents all around the world are watching their children suffer, and many of those parents do not have access to the medical resources that were readily available to us.

Given time, honest responses, genuine telling of personal experience and doubt, the "why" question can open the door to the deepest compassion, to the sense that we are all in this together, and that every single life is marked by its own suffering and pain.

In your own life, you have dealt with recurring bouts of a pancreatitis. Where were you able to find God when your illness was at its worst?
Because I have been an Episcopalian all my life, and formed by a tradition that is on the lookout for God in embodied presence, I found God (or perhaps better said, God found me) in a variety of ways. I remember especially the compassionate touch of nurses when I was in the worst of pain. I remember a cool wet wash cloth on my forehead, applied with the kindest of touch, when the pain was simply beyond description. I remember sensing that prayer held me up even though I was flattened. God's presence came to me in the prompt and appropriate administration of medications for pain. I had these peculiarly lucid moments of thinking: "thank God for the people who created demerol."

I have a quirky sense of humor, which it seems God takes advantage of--I was also very much aware of God through my family, which maintains an earthy sense of humor through thick and thin.

And sometimes, in the dark of the night in the hospital, I simply had a sense of Presence, of an unshakeable awareness that even if I were dying, God was with me. I know many people who haven't had that experience, and I have no idea why I did and do. I am grateful, because that sense of God as God-with-us is the bedrock that has seen me through some very rough patches.

Did writing the book help in your own healing process?
Again, the divine sense of humor came in to play. And I believe that each of us needs to laugh in the absurdity of illness. Not to the exclusion of crying or hollering. The laughter just needs to be in the mix. I find I need ongoing daily healing from my inner fears and anxieties about this illness. Having been hospitalized again in May with another acute pancreatitis, and now wrestling with new issues about how to manage some permanent physical problems, I had to take my own medicine and begin again.

Also, I realized about half way through the writing of the book that I had feared that when it was finished I would get sick again. I had to get that fear out on the surface, look at my own magical thinking, and then the book more or less wrote itself. The months immediately following its completion were good and relatively healthy ones.

Please describe the type of person who might benefit from reading Beginning Again.
Anyone who lives with a chronic, progressive or terminal illness will benefit from reading the book. I also think that families who live with a loved one who is ill will be helped. Nurses, physicians and others who care for the ill will benefit from the anecdotal material--sometimes medical personnel do not realize how powerful or injurious their own comments and actions can be.
I can also envision the book being used by support groups; the exercises at the end of the chapters could provide a good starting ground for discussions. Like Broken Body, Healing Spirit, Beginning Again can be used fruitfully both by individuals and by groups.

What else would you like to say about the book?
When the idea for Beginning Again first came to me, I was half-way through writing Broken Body, Healing Spirit. I see these two works as a whole, offering some suggestions for ways to walk through illness that celebrate abundant life even when we least expect that possibility. My hope is that others who have lived with illness will begin to speak and write from their own experiences, raising the real questions about the way we talk about illness with one another. Most of what I offer in the book came to me from others who have lived with some sort of lengthy illness; their stories and their questions have given me the desire to write, sometimes with some feisty spirit, and to challenge the dominant cultural (and sometimes dominant Christian) ways of speaking about illness and praying with others.

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