We made our way through the tall grass of the fields behind the hospital. All of us in the small procession, except, it seemed, the sister, sweated profusely in the stifling humidity. I walked next to the dead man’s widow, but silently because I knew only a few words of Hindi, her native language.
The burial ground was almost indistinguishable from the fields surrounding it. Mounds of dirt overgrown with grass and weeds marked the other graves, some of which were decades old, others just a few months. The nun told us that hundreds of patients were buried here. They had been laid to rest at random angles over the years, in the same anonymity with which they lived their lives as lepers. Many who died had no one to claim them. Those buried in this small patch of earth in the northeast of India, were too poor for a more dignified burial.
Leprosy victimizes the poor who are so often the recipients of the worst our world offers. The World Health Organization reports that in 1999, nearly 720,000 patients were officially registered for treatment of this disease. Health care workers in the field estimate that the true number of lepers may be in the millions. Most live in the poverty-stricken regions of Asia, Africa and Latin America. Malnourished, poor people grow up with immune systems too weak to fight the bacterium that causes the disease. Living in overcrowded conditions, they easily transmit the disease within a family or village. Without the benefit of adequate health care or education, the poor can overlook the early signs of leprosy, and they have difficulty getting the medications used to treat the disease.
We worked at this 140-bed hospital for four weeks in the middle of the summer. It becomes eerily quiet in July because many beds are empty. That is not a sign that the disease has been eradicated in this region. Though leprosy is gradually being eliminated around the globe, India still has the greatest number of patients. The empty beds are rather a signal that the planting season for rice has arrived. Many patients choose to leave the hospital prematurely and return to the fields so that their families will have enough to eat next year. Many will come back to the hospital in a month, when the rainy season ends, but by then their ulcers and wounds will be larger and more infected. There will be more amputations. The sisters who run the hospital say that even the smell of the hospital changes at this time.
In medical circles, leprosy is called Hansen’s disease, after A. Hansen, a Norwegian physician who discovered the causative bacterium in 1873. Leprosy manifests itself in different ways. An early indication is a discolored patch on the skin and loss of sensation in that area. Leprosy attacks the nervous system, particularly in the hands, feet and face. Because of the loss of sensation in the extremities, when patients cut themselves they may not realize it. Without proper care, a wound can easily become infected. This is all the more likely in the cases of the poor, who rely so much on their hands to earn a meager daily wage and who walk without shoes in the marshy rice paddies or dusty roads of India. An infection can assault the body with vigor. Amputation is often necessary if gangrene sets in. Blindness is also common. Once patients lose sensation in the eyes, they stop blinking, and thus fail to cleanse the eye of irritating particles.
Suken, the patient whom we buried with such little ceremony behind the hospital, bore all the marks the disease leaves if it is untreated for a long time. Nothing remained of his hands and feet. When I picked him up to put him in his wheelchair, he weighed no more than 75 pounds. Blindness had already set in. As the cartilage of his nose deteriorated, his face seemed to cave in on itself.
Suken’s case, however, was an extreme one. Most of the patients I cared for will not die from the disease or its resulting infections. Leprosy is now 100 percent curable. It requires only a series of oral medications for as few as six months. More than eight million people have thus been cured. If caught early enough, leprosy leaves no disfiguring marks. Even the clenched fist or curled fingers, signs that the disease has advanced, can now be corrected by a simple surgical procedure.
It is critical for victims of leprosy that no signs be left after treatment. Though modern science has made the disease more manageable, the social stigma attached to lepers in India remains. Before I went to India, what I knew about the disease was largely derived from Bible stories. Lepers were outcasts in the time of Christ, untouchables. Two thousand years later, lepers, even when cured, remain outcasts. A deformed hand or a flattened nose, tell-tale signs of Hansen’s disease, can make it very difficult for people to get a job or find housing. They are branded for life. Even their children are shunned.
That social stigma, along with medical costs, can sometimes be too much for a family to bear. Sad to say, it is not uncommon for patients to be abandoned by their own families, especially if they are very poor and there are other children to be cared for. I met Sona on my first day at the hospital. She is a beautiful 13-year-old girl with a radiant smile. Every day when I went to the women’s ward to bring patients to the bandaging room, I became anxious, because I didn’t know how to ask in Hindi such simple questions as "Who goes first?" Noticing my uncertainty, Sona would point out to the patients who needed to go that day. She always let everyone else go before her. She had then been at the hospital for over a year, an unusually long period of time. During these lonely months, no one had come to visit her. When I left the hospital to return to the United States, this usually cheerful and playful teenager was facing the prospect of having her foot amputated. The first time I saw her cry was after she was told this news.
Perhaps Sona was so resilient because of her youth. But as she gets older and continues to face more of the cruel realities of being a leper in India, I wonder if an unmarked grave in a grassy field awaits her too. I wonder if the stigma will become too much for her to bear, and if her smile will be replaced by the resigned and tired expressions of many of the older patients. While the physical deformities are obvious to the eye, the emotional and spiritual toll of the disease, though less visible, is equally great.
Leprosy colonies still exist in this part of the world because former patients often have no place else to go. They survive by depending on one another. Next to the hospital in which we worked is one of these colonies. During my visits there, I saw how much the people needed one another to survive. One former patient helps a blind man get the dinner that is dished out from large metal buckets prepared by the hospital kitchen. On the porch outside their cramped sleeping quarters, one woman brushes the hair of another who has lost both her hands.
At times during my work at the hospital, especially when I was unable to speak with the patients in their native language, I questioned why I had come 8,000 miles to push wheelchairs all morning. Just what was I accomplishing, mutely going about my work every day? The language barrier seemed insurmountable. I was being trained for ministry as a priest and pastor, yet I was stripped of the ability to rely on the spoken word to console the patients. From those who cared for the patients year-round, I received the same encouraging advice. "What the patients need most," they gently reminded me, "is to be touched just like other people." They want to be made touchable again.
Raised in a culture that places so much value on words alone to convey meaning, thought and emotion, I had underestimated the healing power of touch. When approached by a leper pleading to be healed, Jesus relied not on his eloquence as a prophet or his persuasiveness as a teacher, but on the simple human gesture of touch. By reaching out to the leper, Jesus made him entirely whole again, not just physically. In the face of social ostracism, Jesus’ touch recognized the leper’s dignity as a human being. Once excluded, the leper left Jesus accepted, an outcast no longer.
When confronted with the patients’ sufferingtheir pain in seeing their limbs wear away and their sadness in being rejected by their own societyI wanted to resort to words to heal and console. But sometimes words are not enough. Sometimes the only thing that can console us in difficult times, or even in the course of a bad day, is a reassuring grasp of one’s shoulder or a handshake that lasts more than a couple of seconds. We may not be miracle workers or doctors, but each of us has the power to affirm and to uplift simply by daring to touch another human being. Lacking words that the patients could understand, all I had left in India was the healing power of touch. I had come 8,000 miles to be reminded of this innately human gift.
Though I am now half a world away, I cannot forget the silent suffering of the patients I cared for last summer. Here at home, I find myself looking more closely for the untouchables who pass through my life every day. These are the outcasts in our own society who are dying inside for lack of acceptance and respect. Patients who suffer from AIDS have commonly been associated with lepers in our country. For the misinformed, they are too dangerous to touch. If we look harder, though, we can find the untouchables of our society outside of our hospitals and hospices. We can find them wherever people are excluded or told that they are less than human because others consider them too different, too imperfect or too poor. And if I am honest enough, I can acknowledge my own need for a healing touch from another.
Perhaps this longing, shared by all of us, is what brought me to that grassy burial ground in India and made me feel somehow connected to a man I barely knew. As his body was lowered into the ground, Suken’s arm slipped out from under the sheets. I noticed he was wearing the same bright blue shirt that he had worn when I cared for him in the hospital. The nun intoned a Hindi prayer, the widow said a few words I couldn’t understand, and we each threw some rich Indian soil into the grave. As we walked back to the hospital, I began to wonder whether Suken, buried in the clothes in which he died, had spent his last hours craving the simple acceptance given by the healing touch of another human being.Kevin O’Brien, S.J., is a Jesuit scholastic studying at Fordham University in preparation for ordination to the priesthood.