When I was 13, doctors told my mother I would not live beyond 21- Wale Fanu

THE PUNCH Newspaper- Adeola Balogun

My battle with sickle cell anaemiaToday, there is a medical principle that says your personal attitude to starting things will help you to get over certain problems in life. In most cases, it might contradict the medicals. In some cases, you may be advised not to do it again. This reminds me of a very critical time in my life. I think it was 1968. We were three days away from writing our school certificate examination.

At that time, the school certificate was more than the first degree to most students. I had a crisis and for four days, only my classmates and friends knew about it. Surprisingly, our head cook at St Paul’s College, Zaria noticed that I was going to sit the examination in three days, and since I was not in the dinning hall, something must be wrong with me. My friends told him that I had been sick for three days and I could not get up on my feet. He came to me in the hostel, carried me on his shoulders and went straight to the kitchen. He sent for one of their fellow mallams. He said to the mallam, ‘This boy wants to start taking his exams in three days time, what can we do?’

The mallam boiled some water and brought out the horn which they used to drain bad blood and started work. It got to a point that I did not know whether the water was hot or cold as they massaged vigorously. That day, I slept very well.

The following morning, I was relieved. I went to the examination hall and managed through. Two things happened here: God will send you a helper, but you have to let people know what you are. If not for Sahiru, the head cook, I don‘t know where I would be today, because I certainly would not take the exams, and in those days it was unheard of to miss exams. I am happy that the cook was sent by God to assist me.

When I left secondary school and got to what today is called The Polytechnic Ibadan, which was then known as the Technical College, Ibadan, I had another critical crisis. You know that in life, you learn from your last experience. When the pain became unbearable, stupidly, I went round Dugbe, because our house was not far from there, to look for the mallams to come and do what they did for me the previous year.

The people I met didn‘t know how to manage the crisis. As I grew older in life and still nursing this ailment, I started on my own to search for what could give me relief anytime I had a crisis.

I have crisis in very odd situations, home and abroad. Sometimes I am lucky to be with members of my family or friends who are ready to assist with whatever I tell them I want. This is one of the weaknesses of a sickler. He can tell you what he needs to be relieved. In most cases, from my own personal experience, the things you want to get a relief can be very troublesome. I will tell you the odd ones. When I had an attack in London, I lived in one small room with a friend of mine who was like a brother to me. We had only one bed in the room. I needed to boil water at very odd hours to massage my hands and take my medications to relieve the pain. I needed somebody to help massage my body, serious massage. But if you keep on doing what your body needs when you are in crisis in three or four days, you will forget it until the next one comes.

Out of pity for my mother, the family doctor who was taking care of me from a tender age sent me to Kano to do a blood test. He was confused about my condition. When they brought the result of the test, the doctor said to my mother, ‘I am sorry, this boy may not live beyond 20 or 21 years‘. I was 13 years-old at the time, and I did not even know what it meant, so it didn‘t bother me. I didn‘t know the meaning of dying and I didn‘t know how my mother felt. The same doctor was then posted to the University College, Ibadan and he discovered I had stupidly made an attempt to repeat what happened during my school certificate examination in Ibadan.

I use the word stupid because that man felt like whipping me for doing that. He then explained to me the risk I took in calling a mallam in. We are talking about sometime between 1968 and 1969. The man told me never to call in the mallam again. If you know what the sickler goes through in acute pains, depending on what part of the body the attack is coming from, you will not blame any sickler for doing anything to get a relief. When the pain gets to the climax, if they tell you to jump into the ocean, you will jump. It is like when a woman is in labour and the pain becomes unbearable and the woman starts to scream and says she wants a Caesarian Section. A lot of people will say, no, no, push. It is only the woman that knows what she feels.

When it was three or four months to my 20th birthday, around Christmas, I had a terrible crisis. The crisis always comes at very odd hours, say around 2 am or 3 am. At that time, the strongest pain relief drugs we had then was Codeine, which was sold in a bottle containing about 100 tablets. By the time the pain had fully registered, I had taken half a bottle. And then, by the time my father realised that the crisis was getting out of hand, he quickly rushed me to Dr Ajayi. Ajayi told my father to take me to the Lagos University Teaching Hospital. In 1969, LUTH was like one of the best hospitals you could talk about. By the time we got to the hospital, there was this young doctor who was also God-sent.

I was wheeled into the emergency area and the doctor (I don‘t know how God directed him) put a pipe through my nose right into my brain and started draining the excess Codeine I had taken. But I was on emergency bed for four days. When I finally came out of that situation by God‘s grace. It was the first major life-threatening attack that my father witnessed. It was not the first one I had suffered. My mother was still in the north. She had to quickly make an arrangement to return to Lagos.

Before then, another major crisis had occurred around October 1 1963. I will never ever forget that day. As small as I was, I begged God to take my life. Stark naked, I screamed and nobody could even hold me. I said, ‘God, this is more than enough; I will rather die than continue like this.’ All the nurses, the doctors wept and took pity on me and my mother because after going in and out of hospital almost every four weeks, they all became my friends. Dr Oshodi, the man who God sent to my father‘s family, was quickly called in because it was a public holiday.

When the man came and met me in that condition, he ordered for something called enema, which dislodges the bowels. Immediately they emptied my bowels, I slept like a dead wood. The lesson I learnt from that incident was that I started to watch my waste everyday. I ask myself, have you gone to the toilet today before you start putting another thing in your stomach? As a 13-year old, I learnt that as long as you are a living soul, when you eat, you must pass out the waste. It is the man that wears the shoe that knows where it pinches. All of us can only pity. It was so bad that when I was in secondary school, because that was the time I came back with that result from Kano, that the doctor said I should come for a letter to present to my school principal.

In those days, we were not sleeping on mattresses. We slept on the spring bed. We used cardboard at St Paul College, Zaria. I was the first person to be allowed to use a mattress. I was exempted from manual labour and permitted to use hot water for my bath. Then we had an Irish house master who would bring me hot water from his house. If the cook could not come, this man would bring it himself when I was in crisis. Any head boy we had became my mother’s friend, because they must monitor me. That made me very special and I started to develop a don‘t-treat-me-like-an-invalid attitude. That is why most sicklers believe they can do ten times what a non-sickler can do, because they are not even aware of their status. It is only when crisis comes that they know. Tell a sickler to take a heavy object to anywhere, he is more than ready to do so. Sometimes you feel it when the crisis is coming, because you feel some sensations.

I had another bad one and it was about the time we were producing Owo Blow. You know that the cast of Owo Blow was a large one, and when you have a large cast, you have all sorts of people. Not knowing that I was developing a crisis, they thought that I did not want to pay them their money. So they punctured the tyres of my car. By the time I left Surulere that night, my clutch had already leaked and I began to think about how to get to Alagbado where I lived. I managed to start the car. Looking back at the incident, if there is what is called a miracle, then I will tell you that was one. I drove through the Apapa- Oshodi expressway, via the airport, straight to Agege Motor Road, till I got to the gate of my residence. I never had cause to stop once. And when I struggled to enter, I knew I was in trouble. I always do one thing, if I am going out of my station for production and I am going to stay more than two weeks, I always find the nearest hospital and explain my status to the doctor there, in case I suffer a crisis.

The interesting part of it was that as a man, I knew that I had to work to earn my living. Since I did not have to depend on my father for life, I started meeting people who told me they had children who were afflicted with sickle cell anaemia. But how did they manage? I was rudely shocked when a close family lost two adult children in six months. It pained me. Before then, I had a friend called Gbenga. Before I knew it, he was dead. I used to wonder if this was a killer disease. I hear people tell me, you are lucky, you are lucky.

Why I limp

My story started to change in 1970 when I started to limp. People thought I had an accident or something and I used to tell them that I had a very bad accident. I was referred to Professor Henshaw who ran the Orthopaedic and pathology department at LUTH at the time. He is late now. The professor then told me to do a series of X-rays and when he looked at the results, he said to me, ‘Now I know why you limp. But to resolve this limping, you have to wait until you are 40 years old. I said okay, I would not mind, I would wait. Then I had the opportunity to travel to America and my brother who knew how much trouble my condition gave to the family, had arranged for a doctor for me. And so on my arrival, we went to see the doctor. The doctor told me that the operation was no big deal, but I should not do it then. He said I should take my time and wait till I was 50 years old. He said he could even come over to Nigeria and do it for me. By the time I was 50, some friends and old colleagues of mine who were working with the British Broadcasting Corporation, hosted a party for me.

They hosted the party in Richard Taylor‘s house. Taylor‘s wife had just undergone a hip replacement surgery and after the party, he said, ‘Wale, I think that is what is wrong with you. Maybe we should take you to her surgeon and then you discuss with him. So we went to see him. The man looked at my X-ray and said ‘Yes, it is what you need to do. But if you are still able to make money by working, don‘t do it.’ I asked when I could do it, at least to become a normal human being. He said no, just go on. When you cannot do any work again, come back and we will do it, because the management of that operation is not easy. You know that after that time, which was 10 years ago, I promised myself not to think about it again. So each time the pain is about to get to the point where it becomes unbearable, I take my little everyday medicine and I am okay.

I told you in the beginning that God would always send a helper. When Tunde Kelani and I became friends, and from being friends, professional colleagues, from becoming professional colleagues, we became business partners, I always told him, ‘If tomorrow you see me, then we will continue.’ But I always tell myself, this thing cannot stop me. I have never been to the Sickle Cell Foundation. When they were at Onikan and each time I passed through the place, I ask myself what I am contributing to the foundation. So when I got in touch with Professor Akinyanju, I told myself that for my 60th birthday, I would organise a talk on sickle cell disease. Before then, Funmi Iyanda had begged me to come and talk about sickle cell anaemia in her early morning programme on TV. I told her in confidence that this sickle cell thing is like having a headache, because it is only you that know how to treat it, apart from the general knowledge of it.

Some people sleep with only one pillow, I sleep with four pillows because every part of my body has to be supported with pillows. So it is a personal thing that you have to develop. You have to start to monitor yourself. I told her I could not accept her invitation to come to TV because I didn‘t want to make people feel bad. But when I meet people one-on-one, and I know that we are in the same club, then we can talk.

I notice too that each time a family has a child whose genotype is SS, the child dies. So, I am waiting for the lecture to ask the professor, must we die? If we must die, then tell us what to do, because I don‘t really know why. When I read about a single lady nursing a sickler child, I wept for her. I met another friend through a cousin in London and he said to me, ‘How do you manage? Because my son is SS and anytime he is in crisis, the doctor pumps morpheme into him.’ Then I wonder if at this tender age, the boy is being given morpheme, what will happen when he grows up?

When they were talking about the painkillers Michael Jackson took before he gave up, I said to myself, people don‘t know what pain is. You cannot tell somebody who has never been in labour how pleasant or unpleasant it is to be in labour. It is the person in pain that knows what he is passing through. Before Michael Jackson died, did we ever imagine that he could be in pain? No, but by the time he got back to his base from the stage, he quickly called his doctor.

For many years I used to have a colleague here. Whenever I was leaving London, I would call him and say, ‘Tell Dr Rotimi that I am on my way. Let him get ready.‘ This is because I know myself. There are times I tell you I can drive from here to Sokoto. There are times I tell you, please as I am sitting in front of you, I cannot stand up. I am a Yoruba man. My parents expected me to prostrate before elderly people when I meet them. But I had to open up to my dad. I told him that the pain would not allow me to do that, so accept the bit I can do. But I don‘t know how you want to explain that to other people who think you are too proud to prostrate to elders. This is because the hips have become fused together and so movement here is so much restricted. It is better in the morning and gets a bit difficult in the day, especially after running around. So that is my history. Having endured this problem for 60 years, I think I owe it to the nation to educate fellow Nigerians that this thing may not be a killer, if only we know how to manage it.

Why I didn‘t associate with the Sickle Cell Foundation

I started from a time when nobody knew about sickle cell anaemia. Even when my mother was told that I would not live beyond 20, I didn‘t even think about it. I used to see the sign board of the foundation and I was tempted to go in there. But what whould I have told them? I always wonder whether there is a common forum there for all of us to discuss our common problems. Some of us don‘t even know that as sicklers, we must run away totally from malaria. Professor Akinyanju has asked me to write a book on this. I told him I was not a writer, that what I could do was talk about it. That is why I am arranging a forum for people to come and share in my story.

Source of the disease

Why I never ever thought that it could be from one of my parents is that my mother and I shared the same birthday and we had a lot in common. She stood by me through thick and thin. When I was 40, I told myself I would give my mother a special birthday present, because she suffered. She left me a few months after our birthday and so, whenever my birthday approached, I would break down in tears. She had four children and I am the only sickler and she died at 70. My father had six children and I am the only sickler among them. I am talking about the days when you could not ask anybody any question. In fact, it was not done. It was not like these days that people say I can‘t marry an SS. But now, I beg anybody to be mindful of the status of their spouse in order to reduce the population of sickle cell sufferers. If the two of you truly love each other, why would you want to go through this stress? If my mother was working in the civil service, how would she be able to take care of me? She was a petty trader and so she was able to stay with me for weeks. When they told me to go to Ugheli for HSC at that time, my mother came to my principal and wept. For two reasons. One, she said she could not afford it. Two, the civil war was going on. I was to go to Molusi College in Ijebu Igbo but I ended up not attending the school.

How I got a job

My job is not only stressful, it is energy consuming. The equipment is becoming heavier, not like the camera area that is getting smaller. I told you that when I was approaching 20 years, I slipped into a coma for four days and my father called me with tears in his eyes not to do anything; that if it was feeding, he would feed me. He begged me not to go back to school in Ibadan where I was studying electrical engineering in 1969.

I was searching for a job when I ran into one of my father‘s friends in Obalende. He didn‘t see me, but when he came to my father‘s house in the evening, I told him that I saw him in Obalende and I couldn‘t call him. I told him I was looking for a job that was chemistry based. He said I was lucky, that he was about to employ some people in their film laboratory, which then happened to be the Federal Ministry of Information film unit.

I got in there and I loved the job a lot. In two years, I left there for the NTA that had just opened a new lab and they wanted competent hands to run the place. The challenge they had was that the lab had to start operating when the National Stadium was opened. So we needed to turn out films that would be sent out to regional stations so that people could watch what happened on the day they opened the stadium. So I started working at the NTA even before I was employed.

From 13 pounds 10 shillings that I was receiving at the ministry, my salary was raised to 52 pounds at the NTA, so I moved. I moved not because of the money, but because of the professional challenge. I was sent to Belgium for training and by the time I came back, Tunde Kelani and I had started talking about what to do technically to improve the situation. We were constructing even when we were not making money for production.

My father was very supportive, though each time he gave us money for production, we paid back. My father had another emotional problem: he did not know what to tell his friends what his son Wale did for a living, since he was neither a doctor nor a lawyer. But one day, I had to do something for a neighbour. By then we had started Mirror in the Sun. On the crew list of Mirror in the Sun was a certain Wale Freeman and he used to ask which of the Freeman he was seeing on the screen until one day when I told him that I was the one; that I was using the name Freeman because I was then working with government. He was very pleased. The man passed on peacefully on a Friday morning when I was coming to collect money from him to buy a brand new car.

Blessed with an SS-free home

Even though I would not like discussing marriage, I would tell you that I didn‘t think about it for a second. But by the special Grace of God, none of my children is SS. But now, I want to tell people that they should be very careful when they choose a spouse. Another advice I have for people who have sicklers around them is that they should never allow them to have access to painkillers. Even when they have to dispense to them, they should make sure they don‘t know the source. Otherwise, I would not have taken half a bottle of codeine when I suffered crisis.


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