Working with Dr. Schweitzer

Chapter 13. Leprosy

By Louise Jilek-Aall, M.D.
Those who have learnt by experience what physical pain and bodily anguish mean, belong together all the world over. They are united by a secret bond. One and all they know the horror of suffering to which man can be exposed, and one and all they know the longing to be free from pain....

(Albert Schweitzer, Primeval Forest pp. 124-125)

- Author's translation

Each time a new patient arrived by canoe, a crowd of onlookers would gather at the hospital landing on the Ogowe River. Some came just out of curiosity, others to be at hand if help were needed. One day there was a great commotion down by the river bank. I was too busy at the hospital to find out why, but soon word was fearfully whispered from mouth to mouth all the way into the consultation room: “Un lépreux, un lépreux.” A leper!

The excitement grew as people scurried out of the way on the approach of the newcomers. This time the victim of leprosy, the most abhorred affliction of mankind, was a child. Since I was the children's doctor, they would consult me. The little group dropped their heavy bundles onto the floor and formed a semicircle around my table. They greeted me solemnly and their leader, who was the father of the child, spoke to Gustave for a long time. Finally Gustave turned to me.

“The man says that he and his family have been harassed by his fellow villagers. People say that his son has been cursed with leprosy, but the man says this cannot be true because nobody in his family has broken any taboos, insulted any spirit, or shown disrespect for the ancestors. To clear his name and to restore his family's honor, he has brought his son to Dr. Schweitzer's hospital for us to decide who is right--he or the accusing villagers.”

I looked at the boy, whom they pushed in front of me. He was frightened but, at first glance, looked quite healthy. As the Africans usually knew even the subtle symptoms of this dreaded disease, which was endemic among the jungle dwellers, I was almost sure that he had leprosy. At that time there were still about two million people suffering from leprosy in Africa. Most of them were in the isolated villages of the tropical rain forest.

Why the disease occurs in some populations but not in others is not yet known. Perhaps it is the warm, humid climate of the tropics, the malnutrition of its people, the crowded dwellings, the numerous skin lesions caused by insect bites, that allow the pathogenic organism, mycobacterium leprae, to take hold. Science still does not have the answer, but what it knows is that leprosy is not always as contagious to everybody as it was formerly thought to be. Healthy, well-fed people seldom contract the disease--and even among the afflicted, long-time and intimate contact is usually necessary before the illness is transferred from one person to another. Among the people where the disease is endemic, some will get it and others are spared. Children of leprous parents seem to have a certain immunity against the illness, but not the grandchildren. The exact mechanism of the contagion is not known.

One thing we know, however, and that is that modern medical treatment can practically cure leprosy if applied in the early stages before crippling mutilations have occurred. But the patients might have to continue treatment for the better part of their lives. Unfortunately, only a small percentage of sufferers have access to modern therapy. The rest live their lives as they have for thousands of years--wretchedly; as despised and feared outcasts, until they succumb to the illness or are left to die of exposure or famine.

I looked at the shivering child more closely. His eyes were reddened and when I turned on the flashlight to examine them, he squirmed and covered them with his hands. Inflammation of the conjunctive could well be the first sign of an infection with leprosy. I gently turned the frail body around to examine his back. Inch by inch, I scrutinized the skin. There it was: nearly invisible but clear enough for those who know what to look for. I detected a faint depigmentation of the skin around the inner edge of his left shoulder blade. The slightly elevated margin and the flat center told me that I was looking at the beginning formation of a tuberculoid skin infiltration. I reached for the ulnar nerve at the elbow. The boy let out a cry of pain and withdrew his arm, but I had already felt the hardened string that indicated inflammation of the nerve. There was no doubt. The boy had contracted leprosy some time ago and was in urgent need of treatment.

I explained this to Gustave, who then broke the bad news as gently as he could to the waiting family. The little group around the table was stunned. It took some moments before they grasped what was said: but now the grim reality stared them in the face! No longer could they avoid the unthinkable.

Unaware of their own actions, the adults moved away until there was an empty space around the child. The terrified boy reached out his arms towards the parents, but as he moved closer to his father for comfort, the man thrust a few sharp words at him. Bewildered, the little fellow sank to his knees and burst out crying. He saw only rejecting faces.

When the family finally regained their speech, they began to heap scorn upon his head. In these Africans' view, the boy was guilty of some unforgivable wrongdoing. To them, leprosy, more than any other illness, was the verdict of guilt. Their first impulse would be to distance themselves from the culprit and throw him out of their community. At best, they would take him to stay with a band of other outcasts. Sometimes a well-paid medicine man would try to heal leprous ulcers by rubbing herbs into the open wounds. But experience had taught people that there was little that could be done and very soon they would turn away and leave the leper to his tormenting fate.

The little boy cried and cried. His head dropped in shame for he felt just as guilty as the others made him. Tears flowed down his cheeks and dripped to the floor until there was a tiny puddle in front of his knees. His world was shattered. He who had been the pride of his parents had suddenly become a despised outcast. In all likelihood, he had himself thrown stones at these people, the poor wretches who had come to his village begging for food. Now he was to be one of them! He could read it in the cold eyes of his own parents, and he sobbed uncontrollably in front of the people who, up to now, had been his providers, supporters, and protectors.

Albert Schweitzer, sitting at his table reading and writing amidst the noisy activity of the consultation room, had repeatedly glanced in our direction. The heartbreaking sobs, which expressed mental anguish more than physical pain, greatly disturbed him. He rose from his chair and wound his way towards the unhappy group at my table. He glanced at the bundles the people had brought along and knew they expected to stay for a long time.

“What is the matter?” he asked, rather sharply.

“We brought you this boy,” the father answered, poking his foot at the crouching child. ”What was my son is only a dirty leper.”

With infinite gentleness, Dr. Schweitzer lifted the sobbing child from the floor. “Come on, mon petit, it can't be all that bad.” While examining the frightened boy, he continued to talk to him in a soothing voice. Convincing himself that the little patient was indeed suffering from leprosy, he finally took him by the hand and said softly, “Come, my friend, I want to show you something.”

The little boy grasped the extended hand and held on with desperation as Dr. Schweitzer led the child past the astonished people, outside, through the passage between the hospital buildings, and down the path to the leper village. Gustave and I followed, with the boy's family. Everywhere people stepped aside, fearful lest they might be contaminated. We made a strange procession: the old doctor with the crying boy at his side, the family carrying their heavy bundles and walking along slowly with downcast eyes, and at the end, Gustave and myself waving our hands to turn away curious patients who followed behind.

People suffering from leprosy had been among the first patients to come when Dr. Schweitzer started his hospital in 1913. They had always been more difficult to treat than other patients. The early therapy with chaulmoogra oil was laborious and time consuming, as were the surgical treatments and the tedious work of dressing the leprous ulcers. Other patients were always apprehensive and uneasy with them around. The victims themselves, sensing the tension they created, had a tendency to leave the hospital far too early, as soon as they felt somewhat better. They would inevitably return in a much worse condition than before.

When a new anti-leprosy medication, a sulfonamide preparation called D.A.D.P.S., was introduced in the early 1940s, it was so effective that Schweitzer's hospital became inundated with an ever-increasing stream of people afflicted with the disease.

The other patients objected vehemently, so to calm their fears Dr. Schweitzer felt compelled to ask the leprosy sufferers to build their own huts away from the main hospital. But the huts they built of bamboo and leaf-tiles were unstable and needed constant repairs, which these patients were unable to make. The misery among them was an everlasting problem and, finally, Dr. Schweitzer decided to build a permanent village, a task which he began in 1951.

At the age of 79, he took with him a handful of those patients who were well enough to do some work, and cut a clearing in the jungle some twenty minutes' walk from the hospital. Although using them as workers was slowing down the progress of the construction, Dr. Schweitzer wanted the patients to be actively involved in building their own village. Only then would they really appreciate it, he explained to his critics.

He did, however, send for an old African friend who had helped him build the original hospital, many years before, to again be the chief carpenter; but the carpenter sent back word that he was too old to work.

“If you come to work for me you will grow younger every day,” Albert Schweitzer had replied.

The old carpenter could not ignore that kind of a challenge; he came.

The new houses had concrete foundations and were spacious enough to allow each patient to have his own separate room. With the help of his Nobel prize money and the proceeds from a collection by the people of Norway, Dr. Schweitzer was able to buy corrugated iron sheets for the roofs of the new houses. Now the leprosy sufferers, at long last, had durable homes in a village of their own.

As we walked along the jungle path under the huge trees, Dr. Schweitzer continued to talk to the boy at his side. The child did not cry as desperately as before, but he could not stop sobbing. Soon the lush vegetation gave way to a clearing and we were at the edge of the village. It looked like any other peaceful African village. The friendly looking houses were placed in rows on both sides of the road which led to the village square.

As we passed the living quarters, we saw women housecleaning or hanging up their washing. Men were going about their daily chores. Children were everywhere and when they saw us, they came running, greeting us with happy shouts. Many children did not appear sick. A few ran along with a bandaged foot or had a tuberous skin, but they all looked lively and happy. When the little boy saw their laughing faces and curious eyes, his crying softened.

“Here are your new friends,” said Dr. Schweitzer as the children crowded around and reached out to touch him.

The boy stopped crying as the children greeted us, friendly and without fear. By the time we had reached the village square, people were streaming in from all directions, excited about having the beloved Dr. Schweitzer among them. To us it was common, but to the boy and his family it was indeed a frightful sight as the people limped and hobbled along. Some of the sick looked ugly with a flattened nose or no nose at all, their faces disfigured by lepromatous tumors; some had bandaged feet or only one leg, others claw-like hands with deformed or missing fingers.

The little boy began to cry again and hid himself behind his protector. There was terror in the eyes of his relatives. Dr. Schweitzer gently explained to the fearful visitors that most of these adults were older patients who had not been able to receive the same modern treatment when they first got ill that the boy would get now. He called a few women by name and introduced them to the newly arrived. These women were healthy now but had also suffered from leprosy, Dr. Schweitzer explained. Thankful for what the treatment had done for them, they were staying on in the village to help those less fortunate.

As the boy's father looked at the women searchingly but obviously impressed, Dr. Schweitzer took the opportunity to praise the man for having brought his son promptly, on the slightest suspicion of the child having contracted the disease. He assured the family that with a few months of intensive treatment, the boy might become well enough to return home. In the meantime, the parents or other family members could stay in the guest quarters of the village. The boy would lodge with one of the women who knew how to care for children under treatment.

A young, healthy looking girl stepped forward and, with a friendly gesture, invited the boy to go with her. The boy smiled at her timidly and then he looked at his parents. His father nodded and when the boy still hesitated, the girl took his hand firmly and led him away. We were all glad to see him seemingly content as he followed the young lady to his new abode. The father was visibly relieved--not only because the child would be well taken care of, but because he believed his son would have a certain prestige in the village, since it was Albert Schweitzer who had personally brought the boy there and had praised the father in front of the villagers.

Filled with gratitude and new hope, the little family group lifted up their bundles again and went with the other women to the guest quarters where they were to stay.

We were escorted by numerous people on our way out of the village. Trying to come as close to Dr. Schweitzer as they could, the patients hobbled along, vying for his attention with cheerful talk. They brightened up whenever they succeeded in making him smile. But as the main hospital came into sight, they bade us farewell and returned to their colony. I was deeply moved as I watched them go. In spite of their disfigured faces and crippled limbs, these people now seemed beautiful to me with their friendly disposition and warmhearted spontaneity.

As the days passed, I kept wondering how my little patient was doing. When Dr. Takahashi, the devoted Japanese physician who, for many years had treated the leprosy patients at Schweitzer's hospital, went to the village about a week later, I asked if I could go along. His wife, a nurse, and two African orderlies also helped out. Clinic for the patients was held twice a week.

When we arrived at the village square, the patients had already assembled. Wooden boxes and a few chairs had been placed in front of the big storehouse where the overhanging roof gave some cooling shade. Eager hands now opened the door of the dispensary and brought out clean bandages, surgical instruments, and other things needed for treatment.

Then followed something I will never forget. As old, dirty bandages were taken off, there under the open sky, the bright sunlight revealed the suffering of these patients. The leprous wounds were filled with stinking, purulent matter which had to be washed away, and sometimes bare bone shone whitish through the inflamed, reddish ulcers. Dead bone substance and necrotic tissue had to be scraped away. Fortunately for some of the patients, nerves had been destroyed by the infection so that the operations did not hurt. Yet sometimes a patient would groan with pain and bury his face into the lap of a helping person. The smell of carbolic acid and camphor mixed with the stench of the wounds added to the gruesome scene. I felt sick and nauseated and wondered how I would be able to stand it for hours on end.

Dr. Takahashi and his helpers went about their work efficiently and seemingly quite unaffected. There were wounds to be cleaned, abscesses to be drained, and tumors to be inspected before the new bandages were put on. Skin rashes and other side effects of sulfonamide medication had to be attended to, painful nerve infections had to be examined and treated.

The amount of bandages needed was amazing. Since they were always in short supply in Africa, the old bandages, stained with pus and dirt, were rolled up and stowed away to be cleaned and sterilized later on. Soon they would flutter like white ghosts from the clotheslines outside the colony, ready to be used again on the next clinic day.

Everybody in the village helped out. I could sense the tender feeling of empathy and compassion the leprosy sufferers harbored for each other. They stood ready to console those who needed it. Not many words were spoken, but when a face was contorted in pain or showed despair, someone would stand close by and offer the comfort of physical contact. A child watching a suffering patient would run to fetch water for the thirsty; a boy would hold the hand of his sobbing little sister with a deep wound in the sole of her foot; a mother would wipe sweat from the brows of her trembling son.

When the painful work was finally done and the last ulcer covered with a clean bandage, a sigh of relief went through the crowd. Before the patients began to disperse, they helped clean up the place and store away equipment and supplies until the next time.

Deeply impressed with all I had seen, I went to the place where the children were playing. There my little patient was sitting on a stone watching the others. He was probably not feeling well, as would be expected. In the first weeks of treatment, he might be suffering unpleasant side effects of the medication, but he appeared calm and content. When he saw me his face lit up with a broad smile. He immediately came to greet me. I understood from his broken French that his relatives had already left for home, except for an aunt who had no family of her own. His father had been the last to leave.

“Do you feel sad about it?” I asked.

He shook his head. “Here we are all sisters and brothers,” he said haltingly.

Then he lifted his head and taking in the whole village with his eyes, he expressed what I had myself felt to be true: “This is a good place to be living.”

Copyright © 1990 Louise Jilek-Aall
Reprinted with permission

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