The Swahili word for epilepsy is kifafa. Kifa means “to die,” and the repetition of a syllable is diminutive, therefore kifafa, little dying. An epileptic having a seizure, falling down with a cry, writhing with convulsions, froth flowing from his mouth, and then lying unconscious on the ground, does indeed look like a dying person. Seeing the tortured expression on the face of the convulsing person and how he is helplessly thrown around, the people of the mountains among whom I worked were convinced that a powerful spirit took possession of the kifafa victim. They also feared that the same spirit might jump from the afflicted person to anybody close by. Anyone who came in contact with the saliva or the excrements of the epileptic would be endangered. Therefore, everybody would run away instead of protecting and helping the convulsing person who, deeply unconscious during an attack, could so easily hurt himself.
Kifafa is looked upon not only with fear but also with shame. It is a disgrace to the entire family and is believed to be caused by witchcraft or to be the punishment for certain misdeeds of the afflicted himself or of his kin. The parents' quarrel might lead to kifafa in their child, or if a mother is unfaithful during the time of pregnancy, she or her child might become epileptic. Breaking the taboos, alcohol abuse, laziness or other vices incur ancestors' wrath. They might punish the family by sending the evil spirit of kifafa.
People know the difference between ordinary fever convulsions of little children and the onset of the kifafa illness and they have many rules, especially for children, for how to avoid becoming an epileptic. In a fight one should not strike the other on the head; children should avoid spinning around so that they will not get dizzy, as this is a symptom of kifafa; the fish-eagle must not be hunted because when it is swooping down upon its prey it drops to earth like an epileptic falling to the ground in an attack. A child should not kill a fowl by cutting its neck or watch anybody else doing so, because a decapitated bird jerks just like an epileptic. An epileptic must not even eat a bird thus killed unless a medicine man has given him a root to cook with it.
Encouraged by the surprising recovery of my young epileptic assistant, I wanted to extend the anticonvulsive treatment to other epileptics, but when I began to show an interest in patients suffering from kifafa, the people's attitude toward me changed. As soon as I asked about this illness, the usually friendly people of the mountains became withdrawn and apprehensive. The people's fear of kifafa was such that nobody dared to talk about it. Discussing kifafa with a stranger could provoke the spirit's anger. People hid their kifafa sufferers from me and would not believe that I could possibly control the evil spirit with small white tablets. I soon realized that I would get nowhere with my enquiries and decided to try a different approach.
For years the mission had sheltered maskinis and I noticed that most of these people hanging around the mission doing all kinds of small jobs in return for food and shelter were actually suffering from kifafa. About a dozen such women lived in a small house close to the vegetable garden. A kind-hearted old nun looked after them, helping them when they had convulsions and encouraging them to do gardening with her when they felt up to it. The mission brother who attended the cattle cared for a similar flock of epileptic men. Living close to the stable, they helped him in his daily chores. Although the men often had violent quarrels among themselves, they all loved the friendly brother who helped them as best he could. I decided to start my treatment of epilepsy with these patients. If I was successful it would become known that even such severely handicapped people can be helped and other kifafa sufferers might be brought to me for treatment.
I remember well my first visit to the epileptic men down by the stable. There were about fourteen of them. These men were plagued by convulsive fits day and night. One hefty young man used to spin round and round before falling down in convulsions; another ran around wildly not aware of where he went and whom he met. When he finally came to his senses he would find himself miles away with bleeding feet somewhere in the bush. What strange and pitiful figures they were! Full of sores, with burns and scars, some with crippled hands and feet, some lame, others half blind, some mentally dull, others nervous and shaking. One young boy practically lived in a flour-sack. He crept into it, tightened it firmly around his neck and rolled on the ground, gnashing the red earth between his teeth. I had been warned that some of the men might suddenly be seized with anger and lash out at anybody close enough to be hit. As they came slowly forward and stood around me in a semicircle, looking at me with their swollen, distorted and mask-like faces, I felt fearful and did not know what to say to them. An old man among them with incredibly spindly legs and staggering gait, stepped in front of the others, folded his hands and said in a thin voice “Let us thank Mungu [God] that he has sent Mama Mganga to us, and pray that He will help us to get rid of the evil spirit of kifafa.” They all folded their hands as best they could and spoke in unison. Their simple prayer nearly moved me to tears and certainly took away any apprehension I had felt. One of them, a young boy with a withered arm, rolled a log in front of me with his foot and proudly invited me to sit down. I took out a booklet in which I noted down all their names, showed them the medicine and began to organize a treatment plan with them. We all agreed that the old man should be their leader. They should report all their attacks and other symptoms to him. On my visit once a week he would let me know what had happened. I would note it down in my book and keep track of their improvement. The old man would also be responsible for keeping their weekly supply of medicine and dispensing it every day according to my orders. If one of them should need urgent help, he was to fetch me from the dispensary and I would come immediately. They nodded in silence, knowing all too well that they could not go to the dispensary like ordinary people; their presence would be too objectionable to the other patients.
During the first few weeks of the treatment program I went around feeling tense and nervous about this venture. These patients not only suffered from epilepsy but from all kinds of concomitant diseases and I neither had a hospital close by nor any equipment to make the necessary investigations. I also worried that when the attacks were suppressed, other aspects of the illness might become more prominent, for example mood disturbance or mental disorder. What if they forgot to take their medicine? A series of violent convulsive attacks sometimes ending in death could ensue. But as the weeks passed and nothing happened, I began to enjoy my visits to these patients. It was such a delight to see these once so depressed and miserable people now coming to greet me with smiles, proudly showing me the work they had done and announcing that they had not had any more attacks for a long time. Some of them came to visit me at the dispensary, despite the other patients' apprehension, just to tell me they had not forgotten to take their medicine and to proudly show off their new healthy appearance. The other patients seemed at first surprised and then increasingly curious about my treatment of these kifafa sufferers. When some of the younger epileptics dared to return to their villages and were accepted by their families, word spread among the people that Mama Mganga indeed could defeat the kifafa spirit with the little white pills. Soon epileptics from far and near embarked on a pilgrimage to the mission. Contrary to their usual concern for sick relatives, families would bring their kifafa sufferers to the mission during the night and abandon them outside my quarters. I would find them in the morning when I opened my door, half starved and covered with filth and sores. They would be Iying on the ground in their wet and dirty rags, shivering with cold and fear. Overwhelmed by embarrassment and timidity they hardly dared to move. I literally had to lift them up and drag them indoors.
Because of the other people's fear I could not take the kifafa patients to the dispensary and saw no other solution than to examine them in my own room. Soon my quarters would buzz with the flies which always seemed to thrive on these poor wretches. The smell of poverty and illness would hang on in the room long after the patients had left. Every morning the same thing happened and soon the facilities at the mission were overcrowded. I discussed the situation with my epileptic helper. We decided that he would have to tell the people that unless the family came along and was willing to assume responsibility for their epileptic member, I would refuse to treat him. I had to steel myself and leave the abandoned epileptics unattended outside my door for a few days until the relatives, reluctantly at first, stayed with the patient. I noticed that the kifafa patients were markedly intimidated by the presence of family members. Had they been mumbling a few answers to my inquiries before, they would now give up completely. Crouching humbly on the floor, they left the answering to their relatives. If I addressed a question directly to the patient he would look anxiously at his relatives and only if they gave permission would he whisper a reply.
It was heart breaking to observe how rudely these usually gentle people treated their relatives with kifafa. It must have been the unconquerable fear of the kifafa spirit which dictated such behaviour, and also the fact that it was a disaster for the whole family to have one of them ill with kifafa. Even the healthy young people of such a family hardly had any chance of making a good match when of marriageable age. Sisters of an epileptic cannot secure the usually high bridal price and brothers will be denied brides from healthy families. The epileptics themselves have few chances to get married at all unless their condition is unknown or concealed at the time of marriage. Should their illness become manifest, the afflicted are subjected to extremely rough handling and abuse if not outright rejection by the partner's family. Sometimes two epileptics will live together and share their miserable lot, trying to help each other and keeping each other company. Children born from such a union will be taken from the parents and cared for by relatives, unless the child should turn out to be sick, too. Then it is left with the epileptic parents but has few chances of survival.
Among the many kifafa patients there was a man who caught my special interest. He was not at all downtrodden and depressed like the others but, on the contrary, seemed to demand respect from those around him. He had at least two seizures every month, and there was no doubt that he suffered from kifafa. But in spite of this he always came by himself and behaved with self-assurance and dignity even among non-kifafa patients. Some of the younger people would kneel down and keep their eyes on the floor when he spoke to them. I noticed that people avoided eye contact with this man and I wondered why until one day I met him outside the mission. Unaware of my presence he came walking along the road. He seemed deeply preoccupied and looked at the stony path as he approached. Just as we passed each other he happened to look up. Our eyes met and something like an electric current went through me. I nearly stumbled and turned around to greet him. But he continued on his way unperturbed and I was convinced he had not even recognized me. I could not explain what had happened, but I now understood why people were afraid of his look. Speaking with him when he came for treatment, I never experienced that startling sensation again, but was now even more interested in him than before. He had been under my treatment for about three months when one day he waited until everybody else had left the dispensary. He asked me in a low voice if he could come to see me early next morning before everybody else. I consented, curious about what he wanted.
Before sunrise he knocked at my door. Somewhat surprised I hurriedly got dressed and opened the door. Draped in a colorful blanket with a chain around his neck, a strange head dress, paint on his face, a large bundle in one hand and a Chief's cane in the other, he looked impressively dignified as he entered. He went straight to the window, closed it, pulled the curtains and placed the cane against the door. When this was done he turned to me and addressed me in a very solemn voice, “Mama Mganga, I have not told you before but I am also a mganga. I have treated many people suffering from kifafa, but I could not cure myself nor could any of the other medicine men I asked for help. I know your medicine works. It has cured many people and I myself have not had any more seizures since you started the treatment. I cannot thank you enough for what you are doing for me and for my people. I hear you asking people about their beliefs and fears regarding kifafa. Because I feel your interest is genuine I want to share with you some of my knowledge.” I watched breathlessly as he began to untie his bundle. This was the first time I was face to face with an African medicine man who revealed himself to me so forthrightly. He now opened his bundle which contained many kinds of roots, bark and leaves. A pungent odor filled the room. I kept silent but sensing my keen interest, he sat down beside his bundle and spread the cloth on the floor. Carefully arranging the various ingredients in a certain order he began to talk. “My father was a famous medicine man. He inherited knowledge from his father and furthered it throughout his life. He knew many herbs for numerous diseases. When he grew old he would take my oldest brother along and upon his death my brother inherited all his secrets. I left home when I was a young boy and was working on the coast when my father died. Shortly afterwards I had my first epileptic attack. One night when I felt very lonely and upset, my father appeared to me in a dream. He took me by the hand and led me through a thick forest until we came to an open space. There he pointed to a tall tree and told me that its bark contained strong medicine against kifafa. He showed me how to prepare the remedy from the bark. ”My son,“ he said before he disappeared, ”I want you to help people who suffer from kifafu.“ When I woke up I could hardly wait for daylight before I started out to find the tree. I wandered around in the forest in a daze, until I came upon a clearing which resembled the place my father had shown me, and there was, indeed, the tall tree I had seen in my dream. I took some of its bark and hurried home to my village. When my brother saw that I had the bark and heard about my dream he realized that our father wanted me to be a medicine man. He taught me everything he knew about the treatment of kifafa and sent me to other medicine men to learn more. When I returned home after a year, people began to come to me for treatment of kifafa. Some I have been able to cure--others not, and among the latter, myself.”
The medicine man stopped as if listening. But as it was still very early in the morning and everything remained quiet, he picked up a piece of bark and continued. “This is the bark of the tree my father showed me in the dream. I always use this medicine first. When boiled in water it produces a foam like the froth of saliva on the mouth of a convulsing person. The patient must drink large amounts of this brew. If he gets diarrhea and vomits, he will be cured. He has to vomit until he expels a lump of slime and blood. That is the toad of kifafa. We think there is a supernatural toad in the stomach of the patient. It has to come out or the patient will not be cured. The treatment, which lasts a few days, has to be repeated after a month, and again after six months. But several conditions must be met if the treatment is to be effective. The patient must start the treatment as soon as he contracts kifafa. If he waits until he has burns from falling into the fire the prospect of a cure is very poor. Then a bunch of roots, bulbs and leaves are cooked together with a chicken, and the whole family must eat of the stew. During the year of treatment, the patient must refrain from hard physical work. Drinking home brewed beer and other alcoholic beverages is forbidden and the patient should stay quietly at home avoiding anything that might be upsetting.”
“It is very important to prevent kifafa and so many of my medicines are for the patient's relatives, to strengthen them against the kifafa spirit,” the medicine man continued. “Certain dreams, especially those of being chased by wild animals, are forebodings that somebody in the family might come down with kifafa. A medicine man must be consulted and the right kind of medicine taken by the whole family. There is one dream in particular which is called ‘the dream of kifafa’ and if you ask the kifafa patients you will find that most of them have had this dream. The dreamer is about to wash himself. He pours water from a vessel over his shoulders with a feeling of pleasure. Suddenly he sees that the water turns red, like blood. He wakes up in a panic and might fall into convulsions right then. In any case he should hurry to get medicine against the dream.” The medicine man picked up a root, the one with the repulsive smell. “This root is called nefuzi. It is hung by the bedside. Its bad smell will chase away the evil spirit of kifafa and prevent bad dreams from harming the sleeper.”
The sun was now high in the sky and life began to awaken at the mission. The medicine man stood up and said he would have to leave. Before he bundled up his remedies he gave me the piece of bark from the tree his father had shown him in the dream and said it was his wish that I should take it with me to Europe when returning home. Maybe it could be made into tablets like the ones he got from me. Maybe his medicine could be of help to many patients suffering from epilepsy, even in Europe. He seemed satisfied when I put the piece in a box and promised that I would do what he asked. Then he slipped out and quickly went on his way before anybody had seen him. Later I had the bark analyzed in a pharmacological laboratory in Switzerland and it was indeed found to have anticonvulsive properties in animal tests.
The medicine man spent a few more early morning hours with me, each time taking care that nobody would see him coming or going. Of course I too did not mention his visits to anyone for fear that he would not return. What he told me helped me greatly in understanding the behavior of my kifafa patients and their families. Once he mentioned that his medicines are most effective at the time of the new moon. When I looked surprised he explained that kifafa was in some ways connected with the phases of the moon. This statement impressed me since I knew that the ancient Greek physician Hippocrates had taught that the frequency of seizures varied with the moon phase. Throughout the Middle Ages and until quite recently it was generally believed in Europe that epilepsy and mental disease were aggravated during the time of full moon (“lunatic”). However, the medicine man in Africa claimed that it was during the new moon that kifafa got worse. Nobody would consider treatment to be successful before at least three full phases of the moon had elapsed without attacks during new moon, he said. I had always been puzzled when patients pointed to the sky and spoke about the moon when explaining about their epileptic seizures. Phrases such as “Let us wait until the moon is starting to grow” or “I am all right because the moon is full” now became meaningful to me. Soon I caught myself watching the moon and was satisfied that the patient had the right dosage of anticonvulsant medication only if he came through the moonless nights without epileptic seizures. I gained the impression that the kifafa sufferers had indeed more attacks during the phase of the new moon. Maybe anxiety and fear can precipitate attacks. One thing is certain, that people without electricity are much more aware of the moonlight than we are. They fear the moonless nights when wild animals and all kinds of evil spirits lurk in the dark.
As time passed and people saw the effectiveness of my treatment and I learned to understand their reactions to kifafa, tension eased. I noticed with amusement that the questions I used to ask the new kifafa patient and his family had been circulated among the people and the family would come well prepared for their first interview. As a matter of fact, our first meeting became a kind of ritual; I had to make sure I was asking the questions in the same order every time and that I did not forget any. By the satisfied or anxious expression on their faces I could tell whether I had followed the “rules” or not. The same thing happened with the medicine itself. I had collected a certain type of small medicine bottle and each patient was warned never to use the bottle for anything else but his pills and never to give of the medicine to anybody. The little bottle with its contents also became part of the ritual. The kifafa patients would carry it wrapped in their clothes like others did with their tobacco purse. At a certain hour the patient would unwrap the bottle and take his medicine. It became an important moment for everybody around. People began to fear that little bottle with its potent content. A great power must dwell in there, they inferred, since it could subdue the mighty kifafa spirit. I had asked the patients to place the bottle high up under the roof at night so that it would be out of the reach of children. From its niche above the bed the bottle with the medicine was believed to protect the sleeper from evil spirits and bad dreams. Like the bad smelling root of the medicine man it became a symbol of healing not only for the patient, but for the whole family as well.
As the number of patients seeking treatment for kifafa grew steadily, we could no longer find the time to handle them as well as the other patients every day. So we decided to set aside every Friday for kifafa patients and to close the dispensary for others on that day. The mission nurse and her helpers were then free to work with me, keeping record of the epileptic patients, their medicine and progress. Each patient was handed one week's supply of medication. Some who were seizure-free were given supplies for a whole month or more. At first we were quite nervous every Friday and expected some bad news. Would they all remember to come? Had some of them forgotten to take their medicine? Were they too ill to walk to the dispensary? To our great relief, however, most kifafa sufferers turned out to be remarkably reliable. Their fear of the kifafa spirit made them carefully follow my advice and the rules we had worked out and in case they themselves sometimes forgot to take the medicine their family was sure to remind them. Their cheerfulness and happy smiles, their never ending thankfulness and warm attachment to us made these Fridays unforgettable. We were never able to finish work until late at night, but nobody seemed to mind. People used to bring us small gifts such as eggs and chickens, fruit and rice. After they had checked in at the dispensary they would stay around on the lawn in front of the church exchanging news with jokes and laughter. The unique experience of being in the company of so many other recovering epileptics gave them a tremendous upsurge of self-confidence, and with a frankness they had never dared to display before, they would cheer at anybody who happened to pass by. Sometimes one or two of them would bring their drums and they would all join in singing and dancing. What a marvel to see these once so shy, sick and miserable people now sparkling with joy as they danced to the fast beats of their drums, perspiration glistening on their bodies. Bystanders and latecomers would join in; it was a feast for us all.
But the day had to come, the day I began to dread when I realized that I could not accept any more new kifafa patients. I spent long sleepless nights trying to figure out what to do and made up ambitious dreams of how I would help the people to build a village for the epileptics somewhere close to the dispensary. There would be receiving homes for newcomers where they and their families could stay until the epileptic was stabilized on medication. There would be land for gardens and many opportunities to learn handicraft skills so that they could become self-sustaining. Beautiful dreams I had! But the reality was that I had used up all my money and that the mission which had been so helpful was threatened to be inundated by kifafa patients. I could calculate that since each epileptic needed on the average two tablets a day and there were two hundred of them, the mission would have to come up with more than a hundred thousand tablets a year. That in itself was a formidable task for a mission in a remote mountain area, far away from the coast. I had hesitated for a long time to take a hard look at the reality of my undertaking because it meant that I would have to go back to Europe and raise funds and supplies for the continuing treatment of all these patients. I asked the medicine man whether there were still many kifafa sufferers in the tribe who had not yet contacted me and his answer frightened me. He claimed that the disease was on the increase and that numerous untreated cases were still tucked away in remote mountain villages. I knew I would have to leave, because as long as I was there, new patients would continue to arrive and ask for treatment. I hoped no additional pressure would be put on the mission once I was gone. With a heavy heart I assembled my helpers and together with the nurse explained to them why I would have to leave. They would have to keep the treatment center going until I could return with more money and supplies of medicine. The nurse would keep me informed by writing reports and I would continue to advise her. My departure would have to be kept secret to avoid an avalanche of anxious kifafa sufferers who would try to be started on treatment before I left. They listened with tears in their eyes and accepted the inevitable whether they fully understood it or not. The week before I left became a trial, especially the Friday. When the patients flocked around me as usual greeting me and touching me fondly, I felt like a traitor. They did not know that this would be our last meeting for a long time to come. How well I knew them all and how I had grown fond of them through our common struggle against kifafa. My last night turned into a sleepless nightmare. I could see them all, the kifafa patients who had so completely confided in me. Would they feel betrayed? Was I betraying them?
It was hard to carry the burden of my doubts alone, everything looked so dubious on that last night. Over-tired and sick at heart, I packed my things and sat down waiting for the landrover to pick me up in the early morning. When I heard it coming I rose from my heavy thoughts with a sigh and opened the door. And there, as if materialized out of the cold mist of dawn was a huge grey toad, sitting motionless where so often kifafa patients had waited for me in the morning. It looked at me with big black eyes, the spirit-toad of kifafa! For a moment I was frightened. We stared at each other. Who would be the winner--the spirit of kifafa which seemed bent on destroying a whole tribe, or I, who for the moment was compelled to retreat because of the sheer number of kifafa sufferers? The toad did not move. It looked ugly and to my weary eyes it seemed to grow until finally I pulled myself together. I would not succumb to superstitions. With determination I stepped over the slimy creature on my way to the waiting car. It marked the beginning of my long journey back to Europe.
Copyright © 1979 Louise Jilek-Aall
Reprinted with permission
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