As a child I spent a lot of time in hospitals. Not that I was often ill, but I used to accompany my father who worked as a physiotherapist in pediatric hospitals, homes for patients with cerebral palsy, and centres for the deaf and dumb. My instinct on those first visits was fear: fear of children who were different, fear of the illness that forced them to keep to their impersonal rooms.
'Is it catching?' I asked.
'I wouldn't bring you if you were at risk,' my father answered.
Though barely convinced, I got to know the boys and girls, and over the weeks, they became my friends. The education I received, as I held my father's hand, was an odd one. I grew up in a world where normality was not the norm, where illness was taken for granted and good health was unusual, a world where some patients disappeared, not because they had gone home but because their illness had carried them off.
Death for me quickly became familiar, a neighbour, a figure close at hand that prowled in our midst before it pounced. Contrary to so many children (and adults), it did not take me long to grow out of the belief that I was immortal.
With the ready intelligence of youth, those I met had fully adapted to this new life; in it, they had made their mark, they had their bearings and their pleasures. Far from being a retreat, hospital was somewhere to live. They proved this with a biting humour reflected in Oscar and the Pink Lady. They gave each other nicknames that cocked a snook at illness: Bacon for a child with terrible burns, Einstein for a boy with an abnormally large head. Some of the adults who visited were shocked at this, but it already seemed to me that mockery of this kind was a very healthy sign: what better weapon than jokes with which to confront the ineluctable and show the unbearable who was boss?
I also saw them in pain, sometimes the pain of illness, but above all the pain of loneliness due either to the absence of their parents, or, worse, to the inability of their parents to maintain relations with a sick child. A number of mothers and fathers were overwhelmed by what had happened to their offspring and had lost the ability to hold normal conversations or have fun with them. Some of them actually vanished, crushed by embarrassment, shame and remorse.
My father explained that there was a certain logic to this behaviour even if it was not always justifiable or justified. He overrode my indignation and forced me to see the other side, initiating me unwittingly into my career as a writer - someone who invents different characters, each with his or her own way of seeing the world.
Later as an adult, I again found myself in hospitals, sometimes sharing difficult times with friends and family, sometimes as a patient myself. Like Oscar, I knew what it was to have a fatal illness. Unlike Oscar, my life was saved. However, when I recovered (if, indeed, one ever does recover), I found that getting better was not that important. I even had the idea that there was something indecent about recovery: it is all too easy to forget the ones who don't recover.
This was the starting point for Oscar and the Pink Lady. You could say the book is about the obsession with the acceptance of illness and death as being more important than getting better. I spent years not daring to write this book; I was too aware that I was touching on a taboo subject: the subject of sick children. Did not Dostoevsky say that the death of a child makes it impossible to believe in God?
And yet Oscar writes to God. And yet, in the last letter, Mamie-Rose is not angered but thanks God for having brought Oscar into her life and made her love him. Of course she weeps at what is no more, but she has the strength to be glad about what has been. God is not only the recipient of these letters, He is the main character of the story, although naturally, in His own way, ambiguously, mysteriously. In the opening pages, Oscar does not believe in Him and only writes to Him to please Mamie-Rose.
However, the daily exercise of these letters is good for him, enabling him to distinguish between the essential and the incidental, the spiritual and the material; with every 'PS', he is forced to define what he really wants and forced, too, gradually to open up to other people and to life. Then it would seem that God answers him, although clearly, the child cannot be sure that the messages he receives come from God. Finally, in church, he contemplates the effigy of Christ and shares with Mamie-Rose a moment of mediation on the two kinds of suffering (physical and spritual), and this moment allows him to face the unknown in a different way. And then, one morning, the child thinks he receives a visit, one that teaches him a seminal lesson: 'that first realisation'.
Of course, we can't know any more than Oscar whether God exists and is bothered about us. But, real or imaginary, the child's mediation brings him serenity, love, appetite… it enriches his last days and makes his approaching end bearable. As one of my atheist friends said, 'Even if God is just this favour that man invents for man, that's quite a bit!' God or the best thing about man? Every individual will decide for him- or herself.
Oscar came to life in me from those first words. I now know that he lives for millions of people. I love him. I admire him for his honesty, his courage, his rejection of pathos and the energy that flows from him right to the end - even when he can no longer move, he can still think; I admire the way he grows in wisdom and never loses his generosity of spirit.
This little ten-year-old has become my model. I hope that when my turn comes to face the same situation, I shall show myself worthy of him.