She shook her head before continuing.
"Obviously, you have to ask yourself if it is the drugs that are too expensive, or if it's me who isn't earning enough. The answer is straightforward. My small wage has always been sufficient to feed my family, but it's not enough money to save me from death."
So Christine wasn't taking any medication at all. She said she felt more weary now than she had done the previous year. She had been feeling ill for seven years. When her husband suddenly began losing weight and fading away, she knew. The day after her husband died, she went for a test. The result was no surprise. She kept everything to herself for a year. Then she told people, first her sister and then her mother. Whereupon her sister told her that she too was ill.
"I told Aida once she had celebrated her thirteenth birthday. I noticed that the disease was beginning to affect me. It was no longer dormant in my body. It had started moving."
"What did she say?"
"You've asked that already. She said nothing. She was distressed. I believe she already knew that I was ill."
"How could she know that?"
"Aida's a bright girl who listens to what people are saying. And she's not afraid to ask. But most important of all is that she doesn't believe all those people who say that this disease does not even exist."
We had reached the car. The driver was asleep. Flies were buzzing around, there was a smell of crushed banana and wet soil. Christine looked at me.
"You are not surprised? You must know that lots of people, many too many, still think there is no such disease as Aids. Or else they think it's a disease they can get rid of in various terrible ways."
I nodded, because I did know.
When we drove off, Aida was standing with a huge pan in her hand. Christine waved, as did her mother and other members of the family. Aida didn't wave because she was holding something in her hand. But I knew even then that I would be returning.
How can you sometimes know things you don't know? You just know.
20
That evening I thought about what Christine had said. About all those people who still refused to accept that there was such a disease as Aids. And those who did not deny the existence of the disease, yet maintained that there were strange and wondrous ways of curing it. I remembered a sign I'd seen fifteen years before in Zambia, somewhere between Kabwe and Kapiri Mposhi. "I'll repair your bike while my brother cures you of Aids."
I thought about what is happening in South Africa right now. The incidence of rapes has been growing for a long time. Until only a few years ago, most of the rape victims were grown women, or at least teenagers. Not any longer. Since 2001, in some parts of the country, there has been an increase in the number of rapes of children, and most repugnant of all: rapes of infants. This has to do with the widespread, lunatic belief that you can be cured of Aids by having intercourse with a virgin.
How can one fight such mad ideas? People are desperate. How will it be possible to control the Aids epidemic if people continue holding such impossible beliefs?
Christine had talked about her work. About her work as a teacher of the next generation.
She said: "Every time I face my class, it's as if my vision becomes blurred. The same as it is with my father's eyes. Sometimes he complains – although he is not the complaining kind – that everything round about him seems to be duplicated many times over. He sees ten of me, and just as many of my mother. It's the same with me when I'm standing in front of my pupils. Despite the fact that I don't have a problem with my eyesight. Not yet, anyway, although I know that many people with Aids go blind before they die. I see my pupils multiply before my eyes. And I see all the children who have not yet become my pupils. All those who will never learn how to read and write. Being able to read and write means being able to survive. How else can you find out how diseases are spread, how else can you learn how to protect yourself and survive? Of course medicines are important, of course I wish my wages were sufficient for my treatment. But it's just as important that all the children I see as blurred images have access to the knowledge that could save them from an all-too-early death. I want them not to have to write memory books for their own children because they die so young."
That is what Christine said. Several times. She wanted me to remember. That's why she kept repeating it.
21
Memory books. Writings as death approaches, about death and about life.
This is what this text I am writing is supposed to be about.
I did not go to Uganda so that a girl named Aida would show me the mango plant she tended with such care and concealed under a pile of twigs so that the family's pigs wouldn't gobble it up. I had travelled to Uganda to meet people who were preparing for death by writing little books for their children.
I do not recall the first time I heard about these memory books, but I recognised straight away that they were something I ought to find out more about. These memory books, small exercise books with pasted-in pictures and texts written by people who could barely recite the alphabet, could prove to be the most important documents our time has produced. When all the official reports, minutes, balance sheets, poetry collections, plays, formulae for the control of robots, computer programmes, all the archive materials that represent the foundation on which our life and our history is based – when all that has been forgotten, it could be that these slim volumes, these memoirs left behind by human beings who died too soon, prove to be the most significant documents of our epoch.
Five hundred years from now, what will be left from our time and the ages that preceded us? The Greek tragedies, of course, Shakespeare, and a few other things. Most treasures will be lost, and if not completely forgotten, then kept alive only by a tiny minority. But these memory books could well live on and tell future generations about the terrible affliction that affected our age, that killed millions of people and made millions of children orphans.
There were a lot of questions to be asked. How does a person tell his or her story when he or she cannot even write? I was privy to many different types of story. Memories can be smells, drawings, they do not need to be photographs or written texts. What is the essence that tells others who we are? No doubt the diaries of some people will have something to say about me. But what do the words mean? Apart from the fact that I laugh or cry or smell of garlic?
Storytelling involves words. In olden times stories were handed down by word of mouth from generation to generation, and in many parts of the world that is no doubt still true today. But what is to become of the story when so many links in the human chain disappear? What can children say about their parents if they do not remember anything because they were so young when their parents died? Or to put it another way: how can parents explain who they are to children who are so young that they can't comprehend?
This is what Memory Books are all about.
How does a person tell his story if he cannot write? When he can no longer pass his story by telling it to the next generation? The answer dawned on me. Everybody can tell his or her own story. Words make everything simpler, they are the best method. But it seemed to me that words could be replaced. It must be possible for illiterate people to tell their stories. Smells, imprints, drawings or perhaps pictures taken by cheap disposable cameras. Why not supply everybody who wanted to leave behind a memory book with one of these single-use cameras? It isn't true, of course, that pictures say more than a thousand words, words usually tell more; but a face, a smile, a body, a person standing in front of a house wall or a clump of banana trees could be just as significant.
This is what Memory Books are all about: children must be able to tune into their parents who are no longer alive. Recollections of physical contact buried deep down inside, words and voices that are only vague memories, as something in a dream.
22
I went to Uganda in order to understand all this, so that I could write about it. In order to be able to tell readers that these Memory Books, or Minnesskrifte
r, Libros des memorias, Errinerungsbücher, Livres de mémoires, are important documents of our time.
Important. But at the same time, there ought to be no need whatsoever for there to be such books. The ultimate objective of the Memory Books programme has to be a contribution towards the task of ensuring that one day they will be no longer necessary. Nobody should have to die early from Aids. The search for vaccines and cures must all the time be intensified, and existing antiretroviral (ARV) drugs have to be made accessible to all. Nobody should need to write memory books in future.
But millions of these memory books still do need to be written. And it goes without saying that everybody should have the right to do so and receive help where they need it. No orphaned child, whether they live in a village north of Kampala or in some village in China or India, should find themselves growing to adulthood knowing nothing about their parents.
Apart from the fact that they died of Aids.
How many people today in a country like Sweden, my country, know what a terrible disease Aids is? Have we forgotten already the pictures and descriptions produced ten and fifteen years ago when it was not at all sure whether we would be able to control the epidemic? Those who have the disease know, their relatives know and the carers who look after them know. But for most other people Aids is a disease that makes you very thin and fade away, possibly gives you black patches on your face, which leads to the collapse of your immune defence, which leads to persistent infections and eventually perhaps fatal pneumonia. All this is correct. But the fact is that Aids often also involves extreme pain, difficult to alleviate, or very difficult to eliminate altogether.
In Sweden, highly qualified and devoted care is available for as long as it is needed. About ten years ago so-called anti-retroviral drugs began to appear. It was possible to get to grips with HIV, because ARVs delay the onset of Aids. People infected could start to hope that they might be able to live a long life even so. But in a poor country in Africa, where medical care is already primitive? They have to cope with a constant lack of resources, everything from clean sheets to the most advanced medication. And in such countries, the squeeze on what care and assistance may be made available is all the time increasing. What are the prospects there?
To suffer from Aids in Sweden and to suffer from Aids in a country like Uganda are two entirely different things. The gulf between the two peoples is as between the rich and the poor. In all areas. Even when it comes to nursing. Even when it comes to pain.
If you happen to be born in a poor country, the risk of being forced to suffer unimaginable pain is infinitely greater than in a country like Sweden. In a poor country there is a devastating relative lack of resources, as also the medical capacity to alleviate pain. This is incredibly cruel. If you are doomed to die, the agony you are condemned to endure should not depend on where you happen to be born.
23
The day that Christine showed me the memory book she had written for Aida, Aida herself took me secretly to show me her mango plant. The two things were connected, of course, what Christine did and what Aida did. But it was not a prearranged plan. Plans often emerge of their own accord when it comes to death and the sorrow that is in store. Every time the memory book was mentioned, Aida sought consolation in her mango plant. In order to endure the prospect of death she had to make an invocation to life.
24
The little memory books follow a basic template.* An outline is provided on pre-printed pages. There is a simple logic in the headings printed on the various pages. But all the memory books I read in Uganda were original. No two were alike.
* A sample memory book is printed at the end of this volume.
People choose their own roads along which to travel. The most important thing is not to follow the manual but to tell about the very special things that only the writer has experienced. They don't need to be told about that. People think like that of their own accord. Everybody knows what is special about themselves, even if most people are modest enough to think they are no more than ordinary. But an ordinary person is always a person with unique and surprising experiences.
25
I spent a large part of one of the evenings I was in Uganda thinking about what precisely the memory of a person is. I thought about myself, of course. What do I want people to remember about me? What would I prefer to have suppressed? Do I have a number of secrets that I shall take with me to the grave? How can I shape other people's recollections of me?
It is an impossible task. I can hardly control what anyone else chooses to remember about me. I can only have a vague idea of what sort of an impression I have made. To some extent I can anticipate reactions to what I have written, what I have done in the theatre. But what about the memory of me as an individual? The child who was born in St Göran's Hospital in Stockholm at four o'clock in the morning of February 3, 1948?
I can guess that people's memories will vary. Some will remember me as a rather gloomy, possibly even melancholy person who needs to be left in peace and who can flare up if he's disturbed. Others will remember me as the opposite, a decent, cheerful person who will hardly be the last name to spring to mind when drawing up a guest list for a party.
I don't know what people will remember. Nor for how long. Memories are always finite. Memories of me will last for a number of years, but the day will come when they no longer survive. It is given to very few to live on beyond the memories of their grandchildren. After a hundred years most of us are one of the anonymous grey shadows in the blackness that surrounds us all.
But I also turn the question round: what do I remember about others?
26
That evening in Kampala I lay in the darkness and thought about my own parents. That was only natural. Obviously, they were important to me when I was growing up. But in quite different ways. My father was the one I lived with. Without his ability to notice me, listen, be positive, I don't know how I would have turned out. He more than made up for the fact that my mother was present only through her absence. She didn't exist except as a figure in photographs that were hidden away and kept from me. My mother was a strange shadow when I was little. I can't remember how old I was when it finally dawned on me that there was something peculiar about my mother. But I remember asking my paternal grandmother, who lived with us, why I didn't have a mother. I don't recall her answer, but it was evasive, I did notice that. That is something children learn at an early age – how to interpret the way adults answer questions. They soon learn how to tune their antennae to distinguish between the truth and a lie, what is a clear answer and what is evasive.
Then, when I was six, I started searching in secret for traces of this mother of mine who had disappeared. I found several photographs. Including one of me sitting on her knee. They were taken in a photographer's studio on my first birthday. I can still remember my heart pounding when I saw my mother's face for the first time. She had disappeared at such an early stage that I had no memory of her. Now I could see what she looked like. I was surprised that she was so unlike my father. Didn't people who had children have to look like each other? Then it struck me that in the photograph she was looking at me as if I were a child she didn't know. A changeling or something the fairies had brought.
I don't know that I thought that at the time, of course, or that it was so well formulated. But I doubtless realised that there was something funny about it. She was holding me as if I were a burden she would like to put down as swiftly as possible.
In Kampala that night I thought about her and my father, both of them now long since dead. I had difficulty in conjuring up their faces in the darkness. That was a shocking moment. I had forgotten what my parents looked like. It had been a long time since I had seen them, of course: my father died in April 1972 and my mother a couple of years later. There was a no-man's-land of thirty years between the faces I had seen and those I could no longer remember.
On the other hand I could quite distinctly recall the smell of my father's hair and h
is suits. My mother's face was blurred, but I could remember the sound of her voice, the way she spoke, the unmistakable traces of the Örebro dialect that she had spoken as a child.
In my mind I wrote a few memory books about my parents. And of course it was possible to do that. The memories of a smell and a voice meant that the faces came slowly out of the darkness. Now I could see my parents again. The memories behind those smells and sounds opened up many other avenues of memory. I recalled events, conversations, images, both in close-up and long shots.
I Die, But The Memory Lives On Page 3