A Pilgrimage of illness

This a chapter from Writing Straight With Crooked Lines: A Memoir.

by Jim Forest

One of my favorite writers is Flannery O’Connor, who died young, age 39, after years of being afflicted by lupus. Her short stories and novels never fail to surprise. Her letters are no less remarkable — some hilarious, some profound, many both. As her letters bear witness, she was as much a theologian as a storyteller. Eight years before she died, she wrote to a friend, “I have never been anywhere but sick. In a sense sickness is a place, more instructive than a long trip to Europe…. Sickness before death is a very appropriate thing and I think those who don’t have it miss one of God’s mercies.”[1]

My only experience so far of life-threatening illness began in 2003. Routine blood tests arranged by our family doctor suggested that my kidneys might not be working as well as they should. I was referred to the local hospital. About a week after a round of tests, Dr. Willem Bax, an internist, told me that my kidneys were failing, that the condition was irreversible, and that probably within six months I would need to begin dialysis in order to stay alive. “We will be seeing a great deal of each other,” he told me, and indeed we have. I’ve been in his care the past sixteen years.

Dialysis didn’t sound inviting — an alternate method of filtering the blood when kidney function has either dropped below ten percent or the kidneys have altogether stopped working, an event which can happen suddenly. Without an alternate method of getting rid of the wastes that are filtered out of our blood stream by the kidneys, the condition is a death sentence.

Things moved more slowly than Dr. Bax had estimated — six months became a year, one year became two. During those years there had been many prayers, from me and others, that I might be healed. Meanwhile I did everything Nancy and I, plus our friends, could think of to stave off commencement of dialysis, including dietary changes and acupuncture. But at last the day came when Dr. Bax, after reviewing the blood test of the previous day, said dialysis had to begin tomorrow.

I became a traveler in the world of chronic illness, a pilgrimage route far more trafficked than the roads to Canterbury, Santiago de Compostela and Jerusalem combined.

Sickness is time consuming and limiting. With three long sessions of dialysis a week, each about four hours long, more than ever I was anchored in Holland. This is not to say that travel was impossible. I’ve had dialysis care in France, England, Greece, Spain, Canada and the US. It just requires a lot of planning.

Like anyone with a prolonged illness, I had to rethink how to make the best use of each day. My available time for activity had been cut dramatically. Where should the adjustments be made? The decisions involved economies in almost every area of life — less correspondence, less walking, less biking, less household work, less recreational time. Only family time and time spent at our parish church were untrimmed.

Then there was the question of how to make the best use of all those hours spent at the hospital. My first solution was to watch films. Shortly before dialysis began, Nancy gave me a compact DVD player. For the first few months at the dialysis clinic, I watched films, from old Charlie Chaplain comedies to the Harry Potter series, from Orson Welles’s “Citizen Kane” to a movie version of Shakespeare’s “Hamlet.” I would have preferred books, but they seemed ruled out because I didn’t dare move my left arm due to the two long needles inserted in it, one outgoing, one incoming, with the blood-filtering mechanism in between. It seemed obvious that holding a book and turning pages was a two-hand operation. Only my right hand was free. However, as the weeks passed I found I could, with care, safely shift my left arm a little to the right and make a slight turn of the wrist, with the result that I could hold a book, using my right hand to turn pages. A breakthrough! I felt like a prisoner who had been given permission to work in a garden outside the walls.

From then on, dialysis became a time mainly given over to reading. I can honestly speak of dialysis as a period of major blessings. There were so many books I had long wished I had time to read, plus many other books I wanted to read again. Now I had acres of time to read and could do so with no sense of neglecting anything else. Some clouds really do have a silver lining.

My reading was far-ranging, from Garrison Keillor to Dostoevsky, from art history to travel books. At the time I was working on a book about pilgrimage, thus much of my reading was on that topic: journals kept by pilgrims, interviews with pilgrims, books on major centers of pilgrimage, books on the history and theology of pilgrimage.

It was reading about the theology of pilgrimage that proved most helpful. The more I worked on the book, the clearer it became that the most crucial element of pilgrimage isn’t walking or biking along traditional pilgrim routes, great blessing that such journeys can be. The essence of pilgrimage is becoming more aware of the presence of God no matter where you are. This could happen in the most ordinary and familiar location — at the kitchen sink, in a bus, in a supermarket or in a parking lot. It could happen in a hospital dialysis ward. Pilgrimage is a way of living daily life wherever daily life requires you to be. For those on a quest for the kingdom of God, no passport is required. If you happen to be sick, the best place to meet God is here and now in that sickness.

What a laugh! I had been writing about pilgrimage without being aware that the situation I so desperately wanted to avoid and whose demands on me I so deeply resented and resisted could do more for me than walking a thousand miles in prayer to the place of Jesus’s resurrection in Jerusalem.

I recalled an encounter that my friend Mel Hollander had with Dan Berrigan. Dan was giving a lecture on pastoral care of the dying and Mel, a cancer patient whose condition had been judged terminal, decided to attend. In the classroom Dan immediately noticed Mel’s bruised skin color and dark, sunken eyes. His first words to Mel were, “What’s the matter?” Deciding to respond with the same directness, Mel said, “I’m dying — I’m dying of cancer.” To which Dan replied, without hesitation or embarrassment and just as briefly, “That must be very exciting.” Mel later told me how Dan’s few words instantly cleared the dark sky he had been living under. What had until then been a grim journey on a short road to the graveyard suddenly became the most exciting event of his life.

Looking at what was happening to me through the lens of pilgrimage, I came to understand that worse things could have come my way than having to spend so much of my life in a hospital, a place where nearly everyone is either sick, caring for the sick, or visiting the sick. Holy ground.

God bless everyone with good health, who see doctors rarely and have no prescription medications at home. Would that I were one of them. But good health is a condition that can give rise to its own illusions. So much is taken for granted. Having been deprived of good health, the sick are well aware that they are unable to survive on their own.

The pilgrimage of illness made me more conscious than ever before of a basic reality in everyone’s life: my dependence on the care of others, Nancy first of all. Raised as I was in a culture which prizes individuality and independence, I had been slow to realize just how much I relied on others, though actually there had never been a day of my life when this wasn’t the case. That dependence started the instant I was conceived and it will continue without interruption until I draw my last breath. I depend on others for love, for encouragement, for inspiration, for food. I depend on others for the words and gestures that make communication possible. I have others to thank for all the skills I have acquired. Whatever wisdom I have is borrowed from others. Sickness makes it all but impossible to nourish the illusion of being autonomous.

In the community of the sick, all patients are aware of how much they depend on the doctors and nurses who care for us, or all those who do such hidden tasks as laboratory analyses and keeping the hospital clean. I recall a young scarf-wearing Moslem woman, mop in hand, who always gave me the warmest smile when we happened to pass each other in the hospital hallway. At the end of a session of dialysis, I would sometimes say to the nurses who helped me that day, “Thanks for saving my life.”

Each visit to the hospital reminded me that the journey being made by others was often far harder than mine, and more difficult to bear — children who were gravely ill, people in great pain, faces collapsing with discouragement and grief. Being among the sick is being among those who include the dying. During a dialysis session one day, I happened to witness a frail man in his eighties die before my eyes. I thought he had dozed off. So had the nurses. But when a nurse attempted to wake him, it was discovered he had quietly left this world. His pilgrimage was ended.

In fact all pilgrimage routes are lined with graves, most of them unmarked.

I recently got a letter that began “Dead Jim.” I haven’t taken my last breath yet, but I’m well aware it will happen. Nancy and I often joke about the hand-in-hand walk we’re taking down Cemetery Road.

But for the time being I’m one of the escapees. Today kidney illness is treatable. It’s possible to live a long and, for many, a full life on dialysis. It’s also an illness that, for many patients, can be reversed by a kidney transplant. I am among the extremely fortunate. Not only am I living in a country in which intensive medical care is not financially devastating (thanks to the Dutch health care system, we’ve never had to worry about access to treatment or its costs), but Nancy offered me one of her kidneys. I hadn’t sought such a gift or even imagined it.

It was far from an easy decision, as Nancy makes clear in an entry she wrote for our blog, “A Tale of Two Kidneys”[2]:

“People have told me how brave I’m being, but believe me, the bravest part of this whole process is getting yourself to that point where you overcome all your excuses and fears. I kept thinking of Frodo in The Lord of the Rings, who finally makes the decision to carry the ring in order to destroy it in Mount Doom. He must make this decision on his own, and when he finally says, ‘I’ll carry the ring,’ that becomes the organizing principle for the entire story.

“I have always believed that Tolkien was very deliberate in naming Frodo, and that his name could easily fit into the long etymological entry for the word ‘free’ in the Oxford English Dictionary. Frodo — one who acts out of freedom. Freedom doesn’t mean doing whatever you feel like if it’s in your interest, because sometimes you do things that you think are in your interest only to discover later on that you did them under some kind of compulsion — peer group pressure, fear of rejection, fear of loss. Acting under compulsion isn’t freedom. But acting out of love, sometimes doing something that’s downright dangerous, is what freedom truly is. (Interestingly enough, the word ‘free’ and the word ‘beloved’ and ‘friend’ are related, as the Oxford English Dictionary makes clear.)

“So I said yes. And when I did, I suddenly felt as if all the winds were blowing in the right direction, as if I had made a free decision that was somehow in line with a kind of cosmic truth. I realized that for all the months that I had been saying I couldn’t donate a kidney due to economic worries, I had made myself responsible for a kind of self-wrought logical argument that had to be constantly reinforced with my own insistence in order to stay in place. But the yes floated freely. The yes was borne up by something beyond me and my own logical arguments.”[3]

It wasn’t just Nancy who was a rescuer. Our kids were deeply embedded in the transplant process. One of the high points in our memories of that period was a family gathering  initiated by the nurse heading the transplant unit at the Amsterdam Medical Center. All of us, plus our parish priest, Fr. Sergei Ovsiannikov, met in a small conference room to discuss with the nurse what was going to happen and to explore questions anyone might have, including what are the operation’s risks and what happens if my body rejects the transplant.

Crucial support also came from our parish, St. Nicholas of Myra Russian Orthodox Church in Amsterdam. At the end of the liturgy the Sunday before the surgery, Nancy and I were given a special blessing by Fr. Sergei in front of the whole congregation. The anointing reminded me of our marriage in the church. There was a similar sense of standing in a radiant circle of pure grace. On the transplant day itself, the last day of October 2007, a prayer vigil was held in our church throughout the hours our two operations were in progress.

Finally, after a year of tests and interviews, one of Nancy’s kidneys was removed from her body and placed in mine. It has thrived ever since, as eager to work for me as it had been for her. With family and friends, two days after the surgery we celebrated our twenty-fifth wedding anniversary at the University of Amsterdam Medical Center.

During our stay in the hospital, Fr. Sergei twice brought us communion.

One detail: Shortly before the transplant, we were given a postcard reproduction of a thirteenth-century illumination of Eve’s emergence from Adam’s body. Adam is sleeping peacefully while Eve is wide awake. Jesus is standing beside them, his left arm grasping Eve’s wrists in a gesture similar to a midwife pulling a child from the womb, while his right arm is raised in a gesture of blessing, suggesting his power to create.

The source of the image is the Book of Genesis. It is part of a series of scenes that begin with the creation of the cosmos, a favorite subject of Byzantine and medieval art. In each panel, Christ is the key figure. The Second Person of the Holy Trinity, though not yet incarnate, is portrayed as the human being he is to become. This is a way of illustrating the biblical affirmation that each of us is a bearer of the image of God.

Images having to do with Adam and Eve have always fascinated both of us. One of them hangs over our bed. Such stories have almost nothing to do with what, these days, we think of as history. In fact we know very little about the first human beings. But the Adam and Eve story is profound. It stresses an original oneness in Adam and Eve, the two of them mysteriously one being until the body of Eve is drawn out of the body of Adam.

There is an ancient Jewish commentary which responds to the question: Why was there only one Adam and only one Eve? The answer is so that no human being can regard himself or herself as being of higher descent than anyone else. The basic fact about human beings is that we are all belong to the same family tree.

At the same time there is the elusive but compelling memory that still haunts the human mind of a primordial, womb-like Eden: a paradise in which there was no war, indeed no enmity. The first murder, the first splinter of war, occurs only after Adam and Eve have been expelled from Eden.

For Nancy and me this particular image of Adam and Eve has another level of meaning. This icon seems to foresee two-way traffic — in kidneys, for example — between the sons of Adam and the daughters of Eve.

One final note: Several weeks after the transplant, Nancy went back to the hospital for her first check-up. When asked by the doctor how she felt, she said that far from feeling weak or depleted, she felt in tip-top shape, glowing with energy. The doctor wasn’t surprised. He said this is common with kidney transplants between spouses — all they need is the same blood type. In fact, he said, a study had been done in Sweden on this very phenomenon, and that while one would expect a low rate of success in transplants between people who are not blood-related, in the case of married people just the opposite is true. The success rate is very high. There is still no scientific explanation for this, although to us the reason seems patently clear. Love. Nancy says she is convinced that the reason her kidney is so happy in my body is that it knows its partner is never far away

We realized we had been made aware of new meaning to the passage from Genesis: “and they shall be one flesh.”

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[1] The Habit of Being: Letters of Flannery O’Connor, Farrar Straus & Giroux, p 163.

[2] Our daughter Cait created a blog for us to record our transplant experiences: www.ataleof2kidneys.blogspot.com

[3] “Saying Yes”: http://jimandnancyforest.com/2009/07/saying_yes/

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