Saturday, September 13, 2008

The Pilgrimage of Illness

One of my favorite writers is Flannery O’Connor, who died young, age 39, after years of being hard hit by lupus, the same disease that took her father’s life. Her short stories and novels never fail to surprise. Her letters are also gems -- some of them hilarious, some profound, some both. Eight years before she died, she commented in a letter 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, and it’s always a place where there’s no company, where nobody can follow. Sickness before death is a very appropriate thing and I think those who don’t have it miss one of God’s mercies.”

All of us have been sick at one time or another, in many cases very sick. I am probably not the only one here who lives with a chronic illness. None of us is unaware that we’re on our way to the graveyard and have some suffering, possibly a lot of suffering, to do along the way.

There are various ways of looking at this.

One is to say, “It’s a really bad deal -- I’m only putting up with it because I have to.” And it’s true. It is a bad deal. And we put up with it because, not being suicide-minded, what else can we do?

But there is another way of regarding illness, and that is to notice the fact that our maladies are, as Flannery put it, “more instructive than a long trip to Europe.” Or, as she said to a friend in another letter, “Some kind of loss is usually necessary to turn the mind toward faith. If you're satisfied with what you've got, you're hardly going to look for anything better.”

Maybe due to what Christianity has often called original sin, bitterness comes easy. It may be our default setting. Lot’s wife, we’re told, turned into a pillar of salt. I don’t take that literally -- I think it means that, looking back on the destruction of her home, she became a permanently bitter person. Many people have become pillars of salt.

But we don’t have to turn to salt. Life, including grave illness, can be a pilgrimage: a journey in sacred time to a sacred place.

Pissed off -- or on pilgrimage. You decide.

It’s something like the difference between being interrupted or surprised.

“Interruption” is a word with a sour sound. No one longs for interruptions. You were engaged in doing something -- talking with a friend, reading a book, running an errand, quietly thinking, getting a job done, perhaps even praying -- but were interrupted. Probably you experienced a hot flash of annoyance as a consequence.

“Surprise,” on the other hand, is a word full of promise. “What a surprise,” we say when something unanticipated but welcome occurs: someone you’re glad to see shows up unexpectedly, a nicely wrapped package awaits you when you had no idea it was your anniversary, an item of unforeseen good news comes your way.

Considered with an eye open to providence, many an unwelcome interruption might evolve into a heaven-sent surprise. Whether one looks at the unplanned with an open mind or with brittle resentment reveals a good deal about one’s spiritual condition at that moment. Step by step, the pilgrim is attempting to leave irritation behind and to receive interruptions with a sensitivity to God’s providence. It is a conversion of perception that resembles Christ’s first miracle, turning water into wine at the marriage feast at Cana. What was plain old water somehow is changed to wine worth writing home about. This happens.

In the Gospel Jesus asks the question, “Do figs grow from thistles?” The obvious answer is, “No, thistles grow from thistles.” However the main theme of the Gospel is exactly the opposite. It’s all about conversion. Water to wine. Interruption to surprise. Closed doors to open doors. Enmity to friendship. Vengeance to forgiveness. Violence to nonviolence. Fear to love. Disbelief to faith. A crucified body to a resurrected body.

As St. Paul put it, “They say we are dead and yet we live.”

Conversion is the real pilgrimage. Each pilgrim sets off on his journey in the hope of being a changed person by the time he gets to where he’s going -- someone less quick to take offense, someone more patient, someone better able to respond to the needs of others, someone better able to see the image of God in other people, someone more capable of self-giving love, and someone more able to accept the love and care of others.

I am not only thinking of the sort of pilgrim journey that ends in a far-away holy place. Pilgrimage is not so much where you’re going as how you’re being. It doesn’t necessarily involve travel. You can be a pilgrim while standing at the kitchen sink.

I sometimes think of an evening with Vietnamese friends in a cramped apartment in the outskirts of Paris. At the heart of the community was the poet and Zen master, Thich Nhat Hanh. An interesting discussion was going on the living room, but I had been given the task that evening of doing the washing up. The pots, pans and dishes seemed to reach half way to the ceiling on the counter of the sink in that closet-sized kitchen. I felt really annoyed. I was stuck with an infinity of dirty dishes while a great conversation was happening just out of earshot in the living room.

Somehow Nhat Hanh picked up on my irritation. Suddenly he was standing next to me. “Jim,” he asked, “what is the best way to wash the dishes?” I knew I was suddenly facing one of those very tricky Zen questions. I tried to think what would be a good Zen answer, but all I could come up with was, “You should wash the dishes to get them clean.” “No,” said Nhat Hanh. “You should wash the dishes to wash the dishes.” I’ve been mulling over that answer ever since -- more than three decades of mulling.

But what he said next was instantly helpful: “You should wash each dish as if it were the baby Jesus.”

That sentence was a flash of lightning. I still mostly wash the dishes to get them clean, but every now and then I find I am, just for a passing moment, washing the baby Jesus. And when that happens, though I haven’t gone anywhere, it’s something like reaching the Mount of the Beatitudes after a very long walk.

Being sick is a lot harder than washing dishes.

Let me talk a little about my own pilgrimage as a sick person even though I’m not a perfect example. Each person’s encounter with illness is unique. Mine has been far from the worst. But perhaps there are some aspects of my particular pilgrimage with a chronic illness that have some meaning for others.

Back in 2003 routine blood tests that had been arranged by our family doctor suggested that my kidneys might not be working as they should. I was referred to an internist at the local hospital. Following further tests, about a week later the internist, Dr. Bax, told me that my kidneys were failing, that nothing could be done to halt their decline, 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, “for the foreseeable future.”

Dialysis? That was an unfamiliar word and didn’t sound inviting. Dr. Bax explained it meant using an alternate method of filtering the blood when kidney function has either dropped below a minimal level or the kidneys have altogether stopped working, an event which can happen with no advance warning. Without an alternate method of getting rid of the wastes that are filtered out by the kidneys, kidney failure is a death sentence. In every cemetery there are the tombstones of those who died because their kidneys gave out. Even since the development of dialysis in the latter half of the twentieth century, many such deaths still occur.

During subsequent visits to the hospital, I often had a glimpse into the several wards where patients were undergoing dialysis. Transparent plastic tubes filled with dark red blood ran from the bandaged arms of men and women, sitting in barbershop-like chairs, into machines that looked like props from a Star Wars set. It seemed to me a nightmare vision. Each time I saw what was going on, I hoped against hope that I would not eventually have to join them.

Things moved more slowly than the doctor had estimated -- six months became a year, one year became two. During those two years there had been many prayers, from me and from others, that I might be healed. While not expecting a miracle, I was definitely not opposed to one. Meanwhile I did everything my wife and I plus our friends could think of to stave off dialysis. But at last the day came when the doctor, having reviewed the blood test of the previous day, said dialysis would have to begin tomorrow.

There were days when it seemed to me that prayer had failed. There was no miracle. Though my illness had progressed slowly instead of quickly, I had gotten steadily worse. But actually, as the months passed, I became increasingly aware how much I was helped by prayer, not only my own but still more by all the prayers that were coming my way from friends and even strangers. Such spiritual support, I think, was a major factor in my gradually coming to terms with my illness. I often felt like a sailing ship that was being carried forward by a steady wind of prayer.

I needed that wind of prayer. In my darker moments, and they were many, it seemed to me that I was simply a random victim of rotten luck who was now forced to take a meaningless detour.

Ironically, while feeling sorry for myself, I was hard at work writing a book on pilgrimage -- The Road to Emmaus: Pilgrimage as a Way of Life. Oddly enough, it didn’t occur to me at first that illness is one of the main pilgrim routes.

Sickness is time consuming and also stops you in your tracks. More than ever, my life was anchored in Alkmaar, our small city to the northwest of Amsterdam. If I was to be a pilgrim, it would mainly have to be in our patch of Holland.

Once dialysis began, with its three three-hour sessions each week, travel, though not impossible, was ruled out unless I was willing to go through the extremely complex process of arranging dialysis care wherever I was hoping to go. Book-related lecture trips with many stops, so much a part of my life in the past, were out of the question.

Like any sick person, I had to rethink how to make the best use of each day. My available time for activity outside the hospital had been cut by about fifty hours a month. Where should the adjustments be made? The decisions made involved economies in almost every area of life -- less correspondence, less book work, less walking, less biking, less household work, less time with friends, less recreational time. Only family time and time spent at our parish church in Amsterdam were untrimmed.

Then there was the question of how to make the best use of all those hours each week spent at the hospital. The first solution was to spend much of the time watching films. I had been given a DVD player as a Christmas present just before dialysis began. For the first two or three months, while at the dialysis clinic, I mainly watched films, from old Charlie Chaplain movies to the Harry Potter series, from “Finding Nemo” to “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 hand was one too few for both holding a book and turning pages. 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 the left side of a book, using my right hand to turn pages. 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 having delivered one major blessing. Our library was full of books I had long wished I had time to read, plus many other books I wanted to read again. It had been a long-running if unarticulated prayer that somehow I would find the time. Now, as a dialysis patient, 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 Dostoevsky to Garrison Keillor, from art history to travel books. As I was at work on a book about pilgrimage, many of the books I read were about pilgrimage: journals kept by pilgrims, interviews with pilgrims, books on major centers of pilgrimage, books on the history and theology of pilgrimage.

Ultimately, engaging as the other books were, it was the reading on the theology of pilgrimage that proved the most helpful. It began to dawn on me that illness offers its own pilgrimage route. The more I worked on the book, the clearer it became that the most crucial element in pilgrimage is not walking or biking along traditional pilgrim routes, great blessing that such journeys can be, but is a process of becoming more aware of the presence of God no matter where you are. This could happen just as easily in the most ordinary and familiar location -- home, a supermarket, a parking lot, a park -- as on the way to Jerusalem or Santiago del Compostela. It could even happen in a hospital dialysis ward.

While there is a lot to be said for putting one foot in front of the other while praying your way to notably sacred places, pilgrimage is most of all an attitude toward daily life wherever daily life requires you to be. For those on a quest for the kingdom of God, neither walking shoes nor a passport is required. If you happen to be sick, the best place to meet God is here and now in that sickness.

How funny! 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 in prayer to Jerusalem.

I recalled a meeting back in the early seventies that my friend Mel Holland had with the Jesuit priest and poet, Dan Berrigan. We were all living in Manhattan in those days. In his first encounter with Mel, Dan immediately noticed Mel’s unhealthy skin color and sunken eyes. Clearly something was seriously amiss. Not bothering with the polite nothings that people so often exchange, Dan’s first words to Mel were, “What’s the matter?” Deciding to respond with the same directness, Mel said, “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 since he had been told he had an untreatable cancer and had not more than six months to live. What had until then been a joyless journey on a short road to the cemetery suddenly was transformed into the most engaging pilgrimage of his life. (As it happened, against all medical expectations, Mel’s cancer went into prolonged remission. Mel lived on for some years. He did in fact die young, not of cancer but of smoke inhalation caused by a fire. He did, in fact, die young -- not of cancer, but of smoke inhalation caused by a fire.)

Thanks to dialysis, my kidney illness wasn’t the death sentence it would have been not so many years ago, but I was seriously ill and could anticipate nothing in the future but steady physical decline until the day came when I might get to the point, like many other kidney patients, of saying: “Enough. No more dialysis. Let nature take her course.” (I recall how started I was when I read that the writer James Mitchner reached a point with his kidney illness of deciding enough was eniough. He stopped dialysis and his life ended a week later.)

Yet looking at what was happening 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. In brief: holy ground.

God bless everyone with good health, who see doctors rarely and have no prescription medication in their 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: our profound dependence on the care of others. Raised as I was in a culture which prizes individuality and independence, I was as reluctant 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. I started that dependence 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 acquired while growing up. Whatever wisdom I have is largely borrowed from others. Sickness makes it all but impossible to nourish the illusion of being autonomous and a having a right to whatever good things might come my way.

There is an easily memorized short summary of the Gospel. It’s called the Beatitudes -- ten short sentences placed at the beginning of the Sermon on the Mount. The verses form a kind of ladder. Illness almost automatically puts you on the first rung of the ladder of the Beatitudes: poverty of spirit.

When everything seems to come easily, as if by right, the phrase “thank you” may not always reflect a deeply felt attitude. Being sick changes that. Gratitude rises from the depths of the heart.

In the community of the sick, there aren’t many people unaware how much they depend on the care of others, even if we know only a few of them by name. It’s not only dependence on the doctors and nurses who directly care for us, but all those who have such unheralded tasks as doing laboratory analyses in rooms we never enter or people quietly keeping the hospital clean. I still find it cheering to recall a young Moslem woman, mop in hand, who always gave me the warmest smile when we happened to pass each other in the hallway. Such a radiant face!

It’s not surprising that my appreciation for all the people involved in health care has grown a great deal these last few years. Directly or indirectly, what all these people are doing day after day is trying to keep those of us in their care alive a little longer and, in the case of those we meet face to face, even trying to raise our spirits in the process.

They are professional life-savers, a heroic work, yet do not see themselves as heroes. They do what they do with the matter-of-factness of a teacher writing 2 + 2 = 4 on a classroom blackboard or a plumber unclogging a stopped-up sink. (Yes, there are those for whom health work seems to be nothing more than a job, and not one they especially like doing or have a talent for. But my experience suggests that they are the exception rather than the rule. Much depends on the esprit de corps of the hospital or clinic in which they work.)

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.” They often look surprised to hear such a declaration. Generally people are too polite to express appreciation so plainly, though anyone with a chronic illness knows he or she is living on borrowed time.

It’s not only the professional care-givers who make a hospital holy ground, but also those who visit the sick. Though the regulations in most hospitals attempt to restrict visits to predetermined hours that pose the least inconvenience for staff, in practice visitors arrive and depart throughout the day and, in many hospitals, are only told to come back later if their timing is especially bad. Typically they arrive carrying flowers, though some bring books, magazines, chocolates, juice, balloons, music or all sorts of others things they hope will communicate their love and give the patient a little extra energy for coping with illness.

It’s holy work, and often done despite a temptation not to be there. Hospitals, after all, are places exploding with reminders about human mortality. The most death-denying person knows that every day there are people breathing their last under this very roof. Though hospitals are not the healthiest places to be, crowds of people each day manage to overcome their hesitations, even their fears, and cross the border. After all, it’s not easy to communicate the bond of love while physically avoiding the person you love. Greeting cards and phone calls aren’t bad, but they can never equal the reality of being there.

On the pilgrimage of illness, I came to appreciate better what a healing work it is to visit the sick -- as crucial and powerful an action as what the doctors and nurses are doing. There is nothing more healing than love. Love can be expressed far more openly by the visitor than the health-care professional. Whether visitors sit silently or talk non-stop, they manifest how much the sick person they are visiting matters to them. Whoever visits the sick is a pilgrim, for they are meeting not only someone familiar but Christ as well. It was he who said, “I was sick and you visited me.”

There was hardly a visit to the hospital when I wasn’t reminded the journey being made by others was often far harder than mine, and more difficult to bear -- children who are gravely ill, people in great pain and distress, faces collapsing with discouragement and grief. There is nothing I can do but silently pray, but prayer too may be an achievement in the face of the overwhelming powerlessness one sometimes feels when witnessing what other people are up against. Prayer seems so meager a response -- in moments of doubt, just another form of nothing. But not to pray is itself a kind of dying.

Being among the sick is being among those who include the dying. During a session of dialysis one day I happened to witness a frail man in his eighties die before my eyes. I thought he had dozed off. So did the nurses. But at the end of his session, when a nurse attempted to wake him up, it was discovered he had quietly left this world. His pilgrimage was ended.

In fact pilgrimage historically was, among other things, a dress rehearsal for dying. Countless thousands of people lie buried along the great pilgrimage routes.

In my own case, though I got a letter recently that began “Dead Jim,” I haven’t taken my last breath yet. But it will happen.

In fact, within the community of the sick, I’m one of the lucky ones. Not very long ago, I would have died of kidney illness. Today it’s treatable. It’s possible to live a long and, for many, a full life on dialysis. It is also an illness that, for many patients, can be reversed by a kidney transplant. Assuming the transplant is successful, dialysis is no longer needed.

This is what happened in my case. There’s no need to tell that story in detail, only to say that after not quite two years of dialysis, one of my wife’s kidneys made the journey from her body to mine where is has been living happily ever since. It’s now nearly a year since I made the last of those three-times weekly trips to the dialysis clinic. I still spent a lot of time at the hospital, but now it’s usually less than a day a month. I take a good many pills each day to prevent my body from rejecting the kidney Nancy gave me and also to make sure that my third kidney stays in good health. Frequent blood tests continue. Would that I had a euro, or even a dollar, for every vial of blood removed from my right arm.

I’m a hospital patient for life, and heavily medicated for the duration, but, thanks to my wife, sickness currently involves a lot less of my time. I can do things I couldn’t do not so long ago. I can travel without having to work out medical care along the route. I have more energy. I don’t have to sleep so long at night. I don’t need a daily nap. I can be more productive as a writer. I do lot of walking and biking. All this is a kind of miracle. I feel a bit like Lazarus pulled out of his tomb. Of course Lazarus will in time get sick and die once again, but he has had a preview of life after death and, as a consequence, has a different take on the gift of life.

I am one of the fortunate ones, if only temporarily. But I remain one of those people whose life and way of seeing has been reshaped by illness. What you learn as a sick person you don’t unlearn. I am better acquainted with mortality. I know the days I am now living are pure gift. I have a closer bond both with Christ’s crucifixion and his resurrection.

I owe a lot to sickness.

I remain on pilgrimage.

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This is draft of a talk to be given October 14, 2008, at the St. Agnes Spiritual Life Center, San Francisco

For details about Jim’s kidney transplant, see the online journal — A Tale of Two Kidneys:

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