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Family members advised my mum to run away and we escaped to my maternal grandparents’ home in a nearby village. We stayed there until my dad was next home on leave.
The behaviour of the villagers made him sad and angry. ‘We have as much right as anyone else to live in our own village,’ he said. ‘This is our ancestral land.’
Defiantly, he rebuilt our home, substituting corrugated iron for straw so that the villagers couldn’t burn it down. But even with the reinforcements we continued to feel under siege.
My dad was confused by my illness. He had a modern, educated outlook but was also steeped in the traditions of the village and wasn’t entirely sure if my illness was a new disease or witchcraft.
He was also torn between staying at home to protect his family and continuing in the military so that he could pay for our schooling and give us the kind of life he had ambitions to provide for us.
Eventually, with a heavy heart, he decided to apply for accommodation in the army barracks in Nairobi for all the family. He thought that we would encounter less prejudice in the capital and hoped that I would be able to get some proper medical treatment there. He also thought that that way he could be closer to us.
His faith in me remained steadfast. ‘One way or another you’re going to recover, Anne,’ he said. ‘The local remedies haven’t worked, but in Nairobi you can get the most modern treatments.’
It was very hard for my dad to uproot his entire family and transplant us all into unfamiliar territory, but he felt he had no choice. He realised he wasn’t going to succeed in changing attitudes in the village and needed to keep his family safe.
So, one year after my illness started, our family gathered up our belongings and bade farewell to the villagers. Our relatives cried, but it was clear that many other people were glad to see the back of us.
In many ways it was a relief to my family to make a new start and our mood as we travelled to Nairobi on the JJ Family bus was quite positive. My mum and dad took turns at holding me on their lap.
The first thing my dad did after we’d settled in was to take me to Kenyatta hospital where I could be examined by a proper doctor. The hospital was overcrowded, dirty and chaotic and overflowing at the seams with people of all ages suffering from everything from malaria to malnutrition.
The doctor examined me carefully, moving my limbs in various directions and noting the shape of my spine.
My family gathered around anxiously. They hoped not only for a diagnosis but also a cure, so that the lively two-and-a-half year old who had suddenly been lost to them could at last be restored to full health.
Although my condition was a mystery to my family, the inhabitants of my village and assorted witch doctors, it wasn’t to the doctor at Kenyatta hospital. He looked at my body flapping helplessly like a fish on the shore and pronounced flatly, ‘This is polio.’
My mum and dad gasped.
I was too young to understand what was going on and lay oblivious to the sickening blow the doctor had just delivered.
‘But all my children have been vaccinated against polio,’ my dad said. ‘My wife walked many miles to the health clinic with Anne to make sure she had the vaccine.’
Some Kenyans chose not to vaccinate their offspring because they thought that whatever substance those strange syringes were putting into children’s bodies was a plan of the white man to reduce the African population. My family, however, didn’t share that view.
The doctor shrugged. ‘That’s too bad. But it happens sometimes. Maybe the vaccine was out of date and not that effective.’
He explained that the polio virus had attacked my spine, entering in an asymmetrical way and leaving it curved in two places. Some muscles had completely wasted away, though some function remained in others.
‘What can you do for her?’ my dad asked.
‘I’m sorry, there is nothing we can do for her now,’ said the doctor, shaking his head sadly. ‘She can have some physiotherapy to improve the movement in the muscles that are still working and a plaster cast to straighten out the limbs, but we can’t restore movement. We can’t repair the nerves the virus has destroyed.’
My mum started to cry. My dad put his arm around her and did his best to comfort her.
Polio is a virus carried in water and food that causes nerve damage. It attacks different parts of the body, leaving them withered and lifeless. There is a great deal of knowledge about how to prevent it now, but because it has been successfully eradicated in most of the world it is regarded as a disease of the past and not one that researchers are looking into anymore.
As I lay quietly on the examination table my dad sighed heavily, wondering what kind of life lay ahead for me. One thing was certain though: things were not going to be easy.
Still, he was determined to try to make the best of it. ‘Well, thank God my daughter has survived,’ he said. ‘We will find a way to make life as good as possible for her.’ He stroked my hair sadly. ‘You are a strong girl, Anne, and I know that somehow you will overcome all of this. I didn’t give you the middle name Olympia for nothing. I know that despite your polio you will still show the world how strong and powerful you are.’
I didn’t understand what he was talking about and was absorbed in looking at the strange surroundings of the hospital, a place that looked nothing like the traditional village I had spent all of my life in. Things were already changing for me.
Our family moved into Kahawa barracks and without any fuss adapted to my newly diagnosed disability. My dad was given a small two-roomed place which was more luxurious than our home in the village because it was made of stone and had running water and electricity. My mum lavished enormous care and attention on me. Because she couldn’t do farming in Nairobi, she spent much more time doing knitting and needlework and completely devoted herself to her children. I lacked for nothing and she knew instinctively everything that I needed in order to thrive. She made sure I was always clean and comfortable and played with me a lot. My favourite foods were beans and sweet potatoes with fermented milk, mixed with dried leaves and mashed together into a thick paste. She often cooked this for me because she knew how much I loved it.
One of the best things about our new life was that nobody wanted to burn our house down anymore. Nobody living in the barracks pronounced that our family was cursed because of my disability.
Back in the village, our extended family took over the farming of my dad’s land so that we didn’t have to worry about it being neglected.
The doctors at Kenyatta hospital referred me to an orthopaedic hospital, Kabete, on the outskirts of Nairobi. The doctors there were very familiar with cases like mine and, as the doctor at Kenyatta hospital had predicted, put me in a heavy, uncomfortable plaster cast from my feet to halfway up my ribcage with just a space between my legs to allow me to urinate and defecate. I was very floppy and my knees and elbows were starting to bend. The doctors said that the plaster would straighten my muscles and help me to grow to a normal height. You see some polio survivors in Africa whose knees are bent permanently because they were not put into plaster.
‘I know it will be hard for you to put up with the plaster, Anne, but this is the best chance you have to straighten out your twisted body,’ the doctors explained.
I had to endure this for about a year, which would be hard enough for an adult but was particularly tough for a little girl like me. I couldn’t understand why my body was suddenly locked into this horrible white material. In the village I’d adapted well to only being able to use the top half of my body, but being trapped inside the plaster often made me cry. It was the worst kind of prison and always became unbearably itchy. A new cast was put on every three months and each time the medical staff removed the old plaster they found many wounds underneath it where I had managed to dig my finger or a spoon through the plaster to scratch the maddening itches. Sometimes lice got under my plaster and bred there in the warm conditions.
While I was in the cast my mum carried me around everywhere. My sisters Alice and Jane were very good to me and found ways to adapt their games so that I could join in. We liked to play a game with bottle tops where the person who could make the tallest pile was the winner. My hands used to shake a lot and my sisters helped me to steady them as I tried to place one bottle top over another. Unwittingly, they were helping with my rehabilitation.
The hospital staff always used a noisy saw to remove the old plaster and its harsh screech made me cry, but afterwards my body felt so free. I was allowed a few plaster-free days before the new plaster was applied. At these times one of my sisters would fling me onto her back. It was much easier for my family to carry me around when I was plaster-free.
To me the plaster was just a heavy burden—I couldn’t understand the advantage of it at all. Sometimes I poured ink from my dad’s fountain pen onto it so that it didn’t look boring plain white. My sisters helped me decorate it. We giggled over the designs we created and it made the whole thing a little bit easier for me to bear. When I got bored I would pick up sharp sticks and make chipped patterns in the plaster. Whether I liked it or not, it was part of me and so I just had to find ways to live with it.
My mum and dad did their best to stay cheerful, but both were devastated by my condition. Every time they looked at me they saw the happy, active child I had been before the virus had struck. Seeing their little girl struggle with a partially paralysed body caused them great pain.
‘Your sickness is like a knife going through my heart,’ my dad would often say sadly.
My mum and dad were members of the Pentecostal Assemblies of God and when I arrived at church with my mum, the people said, ‘Let that crippled child come forward and we will pray for her.’
Reluctantly my mum took me to the front of the church, where a group of congregants shook me hard and pulled my legs. I can still remember the agony of that pulling.
‘Don’t cry, child. We’re trying to cast out the demons in your body,’ they said.
‘Leave the poor girl alone,’ my mum said. ‘She has suffered enough.’
She and my dad were very unhappy with the church for the attitude they adopted towards me. But both were devout Christians, so they continued to attend services there.
When my mum returned to the village for a visit she encountered similar attitudes. Even though we were no longer living there, people wanted to come to our house to pray for the demons inside me to be cast out. They told my mum she needed to slaughter goats and sacrifice them if she wanted me to get better, but my mum and dad refused to get involved with these superstitious rituals.
‘Our daughter has polio and she’s trying to get help,’ my mum said firmly.
Although we didn’t encounter problems in the barracks, there was plenty of prejudice in Nairobi too. My brother and sisters faced abuse because of my disability when they attended school. ‘Our parents say we shouldn’t play with you because your sister is a cripple and you will bring bad luck to us,’ their schoolfriends said. But they ignored their jibes, loyally defending me and doing their best to protect me. They carried me on their backs to wherever they were going to play and put me down nearby so that I could be part of what was going on. When they climbed trees to pick fruit, they made sure they threw some down for me to eat.
My brother was often busy playing football with the other boys or killing animals or birds with a slingshot, so I didn’t get too involved with his games, but Alice, Jane and I often played together. To them, I wasn’t a girl with a disability, but simply their sister Anne.
My dad gave me the pet name Mamy, a term of love and respect, and my mum did everything for me—bathing me, wiping my bottom and putting me to bed, helped by my brother and sisters. No child could have been more loved and cherished by their family than I was by mine.
My family became very sensitive to my difficulties, but not all of my relatives understood my condition so well. I used to have long hair and one of my earliest memories is of sitting uncomfortably on the knee of an aunt while she plaited my hair in cornrows. Sitting in that position caused me great pain and I began to cry.
‘That girl’s body is aching all over. Don’t hurt her more by plaiting her hair,’ my dad said.
Although at that time I wasn’t fully aware that I was disabled, I was aware that I was different from other children and my parents spent a lot of time reassuring me. They told me that I was a beautiful, intelligent girl who would succeed in life. ‘Don’t listen to what anyone else says. You’re beautiful on the inside and the outside and everything will be fine,’ my dad often said. ‘Your middle name is Olympia and your destiny is to be great.’
When he returned home at the end of the day he always called out, ‘Where is my rose flower?’
My heart lifted when I heard him utter those words.
When I first went to Kabete I didn’t pay too much attention to the other patients, but by the time I was four I began to notice that there were others like me at the centre. I became friendly with a little girl called Rosa who also had polio and we used to play together at the hospital.
When I was four-and-a-half years old the staff at Kabete decided that I didn’t need to be in plaster any longer. The day I heard that news I clapped my hands together and whooped with joy. I thought that at long last my body would be left in peace. For a few months, it was. But my relief was short-lived.
‘It’s time to fit you with some callipers, Anne,’ the staff told me. I’d no idea what they were talking about, but I didn’t like the sound of it.
I cried when I was fitted with my first pair of callipers and crutches. They felt almost as restrictive as the plaster. I felt cheated. I had simply exchanged one prison for another.
The aim of the callipers was to keep my legs straight and help me to walk, but I could only wear them for an hour at a time at first because they hurt me so much. They were clamped to the whole of my legs, with an extension for the lower part of my ribcage. The metal was held to my legs with leather straps. The whole contraption was very hot and uncomfortable, totally impractical for use in a hot African country.
My right leg was a few inches shorter than the left and I was given ugly black polio boots to wear, one a few inches higher than the other to balance my uneven legs. I hated wearing these boots almost as much as wearing the callipers. I looked longingly at the other children of my age who ran around barefoot or in flip flops.
I did enjoy the gentle, relaxing physiotherapy treatment on offer at Kabete, but sometimes the physiotherapists pulled my tendons to stretch my legs and it was so painful that I used to scream. I grew to hate doctors in white coats and associated them only with pain. I tried to accept my situation, but I had reached an age where all I wanted was to be like the other children who ran around the barracks in nothing more than a few flimsy clothes.
Chapter Three Joyland (#ulink_d606bd57-b5ef-54ae-b309-eef8dc002e3e)
When I was four-and-a-half years old my dad found out about a boarding school for children with disabilities called Joyland School for the Physically Handicapped and decided that that would be the best possible place for me to go. English missionaries from the Salvation Army ran the school and the standard of education was said to be very high there. For my dad the school combined his love of education and of all things English, so he was delighted when I secured a place there.
There were actually two schools—one in Thika, near Nairobi, and one in Kisumu, about four hours’ drive from our village. It was decided that I would attend the latter.
I was devastated when my dad broke the news to me. I was used to being close to my mum day and night and the idea of being separated from her was too much to bear. My mum did everything for me—how would I survive without her? And how would I manage without my sisters? I was sure that nobody else would be able to play games so well with me.
‘Please don’t make me go. I’m scared. I can’t manage without all of you,’ I sobbed. I was surrounded by love and suddenly that love was going to be snatched away from me.
‘You can come home every three months for the school holidays,’ my dad said.
I had no concept of how long three months would last for, but I didn’t like the sound of it at all. And I didn’t want to be away from my family for even one day.
But my dad insisted. ‘You know I only have your best interests at heart, Anne,’ he said, stroking my hand. However much I cried, he remained determined I should go to school.
Finally the day dawned and my mum and dad took me to Kisumu on the bus. I sobbed throughout the journey and my mum spent all her time trying to hush me and wipe away my tears.
‘This school will be very good for you,’ she said, ‘and you’ll be coming home in the holidays, so we won’t be apart for too long. We are fortunate, too, that the Salvation Army makes no charge to attend the school.’
I wasn’t convinced.
‘I’m expecting great things from you, Anne,’ my dad said gently, ‘and how will you achieve in life if you don’t go to school? We’re lucky to have found such a nice school for you. They are used to looking after children like you and your life will be much easier for you than at an ordinary school. You won’t have to struggle here and so you can really concentrate on getting a good education.’
‘I don’t care about my education, I just want to be at home with all of you,’ I said.
Nothing my parents said could console me and when we arrived at the school my face was crumpled from so much crying. My dad carried me through the gates and then put me down in the grounds.
I became hysterical because I knew that I was about to be parted from my mum and dad.
Also, the school looked huge to me. I’d never seen anything like it. It was much worse than I’d expected. I’d thought maybe it would be a little school, not a massive place like this. I was sure I’d get lost all the time. And how would I ever be able to walk across the enormous grounds in my crutches and callipers? I could see some of the staff and older children walking around and they all looked like giants compared with me.
Joyland was actually a modern, sturdy building surrounded by beautiful gardens and everything about it was peaceful and well ordered, but even if it had been an exact replica of paradise it wouldn’t have impressed me at that moment. I clung to my mum’s legs and started to wail. I couldn’t imagine life without the woman who lovingly catered for my every need.
Some of the staff members came to greet us and advised my parents that it would be best if they left so that I could get used to my new life.
My mum and dad hugged me and whispered once more that I’d be home for the holidays very soon.
‘Please don’t leave me,’ I begged, but they walked away.
Feeling completely bereft, I stared helplessly at their disappearing backs. I felt completely lost and alone. How could my parents abandon me like that?
I looked around in absolute bewilderment. I was surrounded by strangers.
Then one of them, a well-built, bubbly woman with very short hair, came up to me.
‘I’m Mama Salome,’ she said, beaming. ‘I’m the house mother for your dormitory. I’m going to bring a wheelchair to take you to the place where you’ll be sleeping.’
I didn’t know what she was talking about. I didn’t know what a wheelchair was and I didn’t know that as well as teachers, Joyland employed house mothers, who were, as the name suggests, substitutes for our own mothers.
A few minutes later Mama Salome returned with the chair. I had never seen a chair like that with big wheels attached to it, but I was relieved when she lifted me into it. I was still struggling to get used to my callipers and crutches and it was hard for me to stand up or walk for any length of time. I was exhausted from the journey and all the crying, and desperately wanted to lie down and go to sleep so that I could block out this strange world I was suddenly alone in.
‘We only have two wheelchairs,’ Mama Salome explained, ‘so we use them as taxis to ferry around all the children who have difficulty walking. Sometimes we squeeze two or three children at a time into a chair.’
I had already noticed that some of the children could walk without assistance, although others relied on callipers and crutches to get around.
Mama Salome showed me where the spotlessly clean bathrooms were and demonstrated how the flushing toilets and showers worked. I was terrified by the sound of the flushing and the ferocious splashing of the water from the shower. Later I discovered that many of the children were so frightened by these strange contraptions that the first time they saw them they ran away.
At home my mum had washed me using a bucket of water. I hadn’t been able to use the traditional long drop toilet—simply a deep hole dug into the earth—so she had allowed me to defecate onto a piece of paper that she then took outside to the long drop. Here, because the toilets were so clean and there were no stairs to navigate, the children could easily crawl on their hands and knees to them, something that would have been very unpleasant at a long drop toilet. All the facilities at the school were designed to make life as easy as possible for children with physical disabilities.
Next I was shown the place where I was sleeping, which Mama Salome explained was called a dormitory. I had never seen such a big room for sleeping in before, nor so many beds lined up in neat rows. They looked very comfortable, but I couldn’t lie down and sleep yet.
Next Mama Salome offered to help me unpack. She folded the clothes that my mum had packed for me, but then started scratching her head.
‘Where is your underwear, Anne?’ she asked. ‘There doesn’t seem to be any here.’
At first I didn’t know what she was talking about and felt very embarrassed that I hadn’t brought something with me that was apparently important.
At home I had always worn trousers and it had made life easier not to wear any underwear. At Joyland, though, all children had to wear underwear underneath their uniform of brown tunics or trousers and yellow blouses or shirts.
‘Never mind. I’m sure we can find something for you,’ Mama Salome said kindly. ‘Come, I’ll show you around a bit more.’
Joyland was surrounded by a wire fence. The staff room, library and Salvation Army major’s house were all close to the main gate. There was also a nursery school and I saw young children there wearing the tiniest callipers and crutches. I soon discovered that they were taught independence from a very early age.
There was a tailoring room where uniforms were made to fit each child, because many of the children did not fit standard clothes. Those with curved spines or misshapen limbs were given specially made clothes that fitted perfectly and felt very comfortable.
All the buildings were surrounded by well-tended flowerbeds. ‘The more able-bodied children look after these,’ Mama Salome explained.
After all the events of the day, I was relieved when it was finally time to crawl into bed. I was used to sharing a bed with my mum or my sisters and it felt strange and lonely having a whole bed to myself. I missed the warm bodies and breath of the members of my family as I drifted off to sleep.
