The Pilgrimage of Illness

by Jim Forest

Any trip, even a small journey from one prosaic location to another, has the potential to become a pilgrimage.

In my own case during these last few years, the most common of pilgrimages has been going from our house to the local hospital, a five-minute bicycle ride from our front door. I make that small pilgrimage three times a week, normally on Monday, Wednesday and Friday.

It's a journey that began several years ago when a routine blood test revealed that the creatinine level in my blood was higher than it should be. Our family doctor referred me for further tests to a specialist at the hospital. More tests made it clear that my kidneys were gradually failing, probably due to damage caused by high blood pressure. Sometime in the not-distant future, the doctor said, I would need to make use of an artificial kidney machine in order to stay alive.

Dialysis was something I passionately wanted to avoid. During the thirty months that followed diagnosis, I faithfully took all the medication my doctor prescribed, but I also looked into alternative treatments. My diet changed. I also found a local acupuncturist who made no promises but said acupuncture might help. As a result I spent many hours with needles placed in various areas of my body, from feet to ears. This therapy may have been a factor in retarding the progression of the disease, but tests showed that my kidney efficiency continued to decline.

I often prayed for a healing miracle, and many prayed for me. For several years I have been on a list of people for whom our parish prays at each and every liturgy. The fact that there has been no miracle is disappointing, and yet I have felt greatly helped by the prayer. I think it was a major factor in my gradually coming to terms with my illness, an inner shift that happened quite slowly. It may well have been the prayer of others that helped me realize I was on a pilgrimage. For the better part of three years, even while writing a book on pilgrimage, I'm embarrassed to say such a thought never crossed my mind.

In that period of regular hospital visits and frequent blood tests, far from seeing myself on a pilgrim's path leading more and more deeply into the kingdom of God, it seemed to me that I was simply a victim of rotten luck. Each trip to the hospital was a painful reminder of a dark, confining future that was relentlessly coming my way. While I rejoiced each time my doctor told me that dialysis wasn't yet needed, it was joy with a shadow, as he also made me aware that month by month my creatinine level was slowly but steadily rising, a sure sign of kidney failure. Whatever prayer, changed diet and acupuncture were achieving, at the very best the progress of my illness was simply being slowed.

During each visit to the hospital, I had a glimpse into the several wards where other patients were undergoing dialysis. It seemed to me a nightmare vision. Transparent plastic tubes filled with dark red blood ran from the bandaged arms of men and women into machines that looked like props from Star Wars. I hoped against hope that I would not eventually have to join them.

And yet I have. A year ago, soon after returning from a Christmas visit with my oldest son, his wife and two of our grandchildren in America, my doctor looked at the latest blood test results, then called the dialysis unit to make an appointment for me to start dialysis the next day.

What I had desperately hoped to avoid is now normal. I now spend nearly twelve hours a week - fifty hours a month, six hundred a year - at the dialysis clinic. Dialysis is part of the core structure of each week. Blood-filled plastic tubes now link my arm to a dialysis machine. Nurses that I saw caring for others now care for me. People who were unenviable strangers, dialysis patients, now are people I know by name. The "other" now includes me. We're all in the same boat.

I've had to rethink how best to use my available work time. My work time has been radically cut. This has not been easy.

Yet there are significant pluses to report. It finally dawned on me that the hospital I dreaded visiting is actually holy ground. My main pilgrimage these days is the unprayed-for blessing of regularly going to a place where nearly everyone is sick, caring for the sick, or visiting the sick.

I've discovered that far worse things can happen than being chronically ill. Unlike people burdened with the illusions that come with good health, the sick are well aware that they are unable to survive on their own. We're intensely conscious of our dependence on the care of others. It's hard to be seriously ill and not be poor in spirit, the first of Christ's Beatitudes. Because of that, the sick are by definition on the ladder of the Beatitudes. Each of us may still have quite some climbing to do, but, thanks to illness, at least we've made a start. We're on the first rung.

In a culture which prizes individuality and independence, most of us are reluctant to realize how much we depend on others, though in reality there has never been a day of our lives when this wasn't the case. We started that dependence the instant we were conceived and it continues without interruption until we take our last breath. We depended on others for love, for encouragement, for inspiration. We depended on others for food. We depended on others for the words and gestures that make communication possible. We depended on others for all the skills we slowly acquired while growing up. We depended on others for wisdom. And yet for much of our lives we managed to nourish the illusion that we were independent and had the right to pat ourselves on the back for whatever good things came our way. The phrase "thank you," however often it was said out of social necessity, didn't necessarily reflect a deeply felt attitude.

Being sick changes that. The words "thank you" begin to rise from the depths of the heart. In the community of the sick, there aren't many people unaware of how much they depend on the care of others, even if most of them are people we don't even know 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.

Directly or indirectly, what all these people are doing day after day is trying to keep us alive a little longer and, in the case of those we meet face to face, even trying to keep our spirits up in the process. They are professional life-savers, yet none 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 repairing a stopped-up sink. Yes, there are those for whom hospital work seems to be just a job, and perhaps not one they especially like doing; but my experience suggests such people form a small minority.

At the end of a session of dialysis, I sometimes say to the nurses who helped me that day, "Thank you for saving my life." They always look surprised to hear such a declaration. Generally people are too polite to express appreciation that plainly, though anyone with a chronic illness knows he or she is living on borrowed time. Every dialysis patient knows that he or she, without dialysis, wouldn't have long to live. The writer James Mitchner's life ended a week after he decided to stop dialysis.

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 many hospitals attempt to restrict visits to predetermined hours that pose the least inconvenience for staff, in practice we find visitors arriving and departing throughout the day and rarely being told to go away. 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 in this building. Also hospitals are obviously not the healthiest places to be in. Yet crowds of people each day manage to overcome their hesitation, even their fear, 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.

Visiting is a healing work as crucial and powerful 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."

In my own case, I'm one of the lucky ones within the community of the sick. Kidney illness is certainly inconvenient, and it's not painless being jabbed in the arm with two hollow needles several times each week. On the other hand, neither the illness itself nor dialysis (once you're connected to the machine) is painful. Kidney illness has become treatable. You can live a long and full life on dialysis. You can even travel, though it's not easy as one would like setting up appointments for care at places you might wish to visit. You might even be one of the lucky ones who eventually gets a transplant and no longer needs dialysis.

But in the meantime. As is the case with many diseases, dialysis is not without rewards. If you happen to love books, it's an illness that gives you the possibility of hours of quiet reading time each week. In my life, that qualifies as an answered prayer. Prefer watching TV? Normally I don't, but there's a TV close at hand should I find myself too tired to read and yet unwilling to take a nap. I happened to catch an excellent program on monastic life the other day.

The pilgrimages of illness being made by others are often far harder than mine, or more difficult to bear. In other sections of the hospital I sometimes encounter children who are gravely ill. I often see people who are in great pain and distress. I see faces collapsing with discouragement and grief. There is usually nothing at all I can do but silently pray, which may in fact be an achievement in the face of the overwhelming powerlessness I sometimes feel when I witness 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. Just a few days ago, a frail dialysis patient in his eighties died 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.

What better death is there than to die on pilgrimage? As each year many pilgrims die of accidents and illnesses, every pilgrim route acquires memorials to those whose lives were completed along the way. Among the monuments one finds on the way to Santiago de Compostela in Spain is a pilgrim's staff with a rusting bicycle set in a concrete pedestal, its front wheel raised toward heaven. The German who had been riding it died of a heart attack in El Acebo. Later on, an Irish pilgrim happened to find a bouquet of flowers along the roadside, picked it up, but found it awkward to carry. When she came upon the bicycle monument, she left the flowers there, realizing that, like the German biker, she "did not want to spend the last days or months of her life dying in bed."

I recall a priest Nancy and I met at a Russian Orthodox church in Jerusalem twenty years ago who showed us a remarkable scrapbook nearly a century old - fading photos of Russian pilgrims coming in their thousands to the Holy Land until such journeys were made impossible, first by the world war that broke out in 1914 and then by the draconian restrictions imposed by the Soviet regime after 1917. He pointed out that many of the pilgrims we saw in the photos had buried others who died along the way, and that many more died either in Jerusalem or on the way back home.

"A pilgrim leaving Russia in those days never assumed he would return alive the way a tourist does these days," he said. "They said goodbye as if for the last time, as indeed was often the case. But this thought did not disturb them. They saw it as a blessing to die on pilgrimage, and especially to die in the city where Jesus rose from the dead."

Whoever is on the pilgrimage of illness cannot help but be more aware of last things than many others, but the job of the pilgrim is not dying but living. As St. Ireneaus, one of the theologians of the second century, said, "The glory of God is the human being fully alive."

Even if it is a life of confined borders, it is no less a life.

Jim Forest is editor of In Communion. His essay on illness is a chapter from The Road to Emmaus: Pilgrimage as a Way of Life, to be published by Orbis Books in August. A children's book, Silent as a Stone: Mother Maria of Paris and the Trash Can Rescue, is being published by St. Vladimir's Seminary Press in July.