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Pilgrim’s Illness

Jim Forest on the Spiritual Journeys of the Sick & the Dying

Any trip, even a small, repeated journey from one prosaic location to another and home again, can become a pilgrimage leading more and more deeply into the kingdom of God. In my own case, 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.

Several years ago, a routine blood test revealed that the creatinine level in my blood was higher than it should be. My kidneys were gradually failing. Sometime in the not-distant future, the doctor said, I would need to use an artificial kidney machine to stay alive.

Dialysis was something I passionately wanted to avoid. For thirty months I faithfully took all the medication my doctor prescribed and changed my diet. I even found a local acupuncturist and spent many hours with needles placed in various areas of my body, from my feet to my ears.

Joy’s Shadow

I often prayed for a 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. I’m embarrassed to say that for the better part of three years, even while writing a book on pilgrimage, such a thought never crossed my mind.

In that period of regular hospital visits and frequent blood tests, it seemed to me that I was simply a victim of rotten luck. Each trip to the hospital was a painful reminder that a dark, confining future 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 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 have to join them.

Poor in Spirit

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. 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 are now 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 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 we can suffer far worse things 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 are intensely conscious of our dependence on the care of others.

It’s hard to be seriously ill and not be poor in spirit. 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 that prizes individuality and independence, most of us are reluctant to admit how much we depend on others. We depend on others for love, for encouragement, for inspiration. We depend on others for food. We depend on others for the words and gestures that make communication possible. We depend on others for all the skills we slowly acquired while growing up. We depend on others for wisdom.

And yet, until we are sick we manage to nourish the illusion that we are independent and have the right to pat ourselves on the back for whatever good things come our way. The phrase “thank you,” however often we say it out of social necessity, does not 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 are not many people unaware of how much they depend on the care of others, even if we do not know most of them by name. We know we depend not only on the doctors and nurses who directly care for us, but also on all those who have the unheralded tasks, such as doing laboratory analyses in rooms we never enter and quietly keeping the hospital clean.

All these people try day after day to keep us alive a little longer and, in the case of those we meet face to face, even try to keep our spirits up in the process. They are professional lifesavers, 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. People are generally too polite to express appreciation that plainly, though anyone with a chronic illness knows he is living on borrowed time. Every dialysis patient knows that without dialysis he would not have long to live.

A Holy Ground

It is not only the professional caregivers who make a hospital holy ground, but also those who visit the sick. Though the regulations in many hospitals 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, and all sorts of other things they hope will communicate their love and give the patient a little extra energy for coping with illness.

It is holy work, and often done despite a temptation not to be there. Hospitals, after all, are places exploding with reminders of human mortality. The most death-denying person knows that every day people breathe their last in this building. And 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. It is 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 do. There is nothing more healing than love. Love can be expressed far more openly by the visitor than by the healthcare 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 he is meeting not only someone familiar but Christ as well. It was he who said, “I was sick and you visited me.”

I am one of the lucky ones within the community of the sick. Kidney illness is certainly inconvenient, and being jabbed in the arm with two hollow needles several times each week is not painless.

On the other hand, neither the illness itself nor dialysis (once you are 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 setting up appointments for care at places you might wish to visit is not as easy as one would like. You might even be one of the lucky ones who eventually gets a transplant and no longer needs dialysis.

Death Rehearsal

But in the meantime, as is the case with many diseases, dialysis is not without rewards. If you happen to love books, it 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.

Usually I can do nothing at all 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 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, she 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 of 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.”

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