Wednesday, 28 July 2010

The book I've been trying to write

Many years ago, I started writing a book. It was about the dilemmas that face people when they have a terminally ill child. That sounds a bit painful but it happens to hundreds if not thousands of people a year and it isn't something that is discussed. When I was in that position, people tended to say I was doing a wonderful job, they wouldn't be able to cope blah blah. What they didn't want to hear was the days when I hated it, didn't cope, struggled from crisis to crisis with insufficient support. When other hollow-eyed, exhausted mothers got together we talked about the forbidden questions: whether we would ever shorten our child's life, whether we can put their comfort over their safety. When you are doling out morphine every day, sitting in waiting rooms for endless appointments, sitting up at night listening to a crying child whose pain isn't relieved, these questions go through your mind. I don't want to write a misery-lit true story, I want to write a novel. Inevitably my characters would have something in common with me but I want the characters to be fictional. I worked with a dying child through my work who would be a good starting point for the child, and the mother is a character I have developed for another story.
I wonder how other people who were in my own story will interpret me writing a story that parallels mine - would they assume the characters reflect how I see them? Would they be hurt or offended? This is a form of life writing, and I haven't quite worked out where the boundaries are. Is it OK to describe family and friends? At least the child and father (in my story) are dead, but other people are still around, especially my other children.
I also don't want to preach. I don't have an answer for these questions myself, and I have spent some time wrestling with them. In 1996 or 1997 I did an Open University course called K260, Death and Dying (still going and still brilliant). Questions came up. Is it OK to turn off a ventilator when someone is brain dead? How about if they are severely brain damaged? Or seriously injured and have left a living will? What about a two year old, who makes the decision then? Parents have the option to abort a severely disabled child before birth. They are often given the chance to limit medical treatment and even food and liquids to very disabled babies. But once you go home with a baby, even if more information comes to light, you are under observation and expected to prolong that child's life at all cost to your family and self.
I don't know what the answer is, I know it crossed my mind during Léonie's last months. I chose to let nature take its course, mostly because I was afraid of losing my children if I did anything to speed up the painful process of her death from a brain tumour. But people did wonder if, with all that morphine around... even one of the district nurses had her doubts. Fortunately my GP and the consultant eased Léonie's final days as much as possible and she had a dignified and peaceful last few days, on the whole. I don't quite know how to do it, but I want to write a story that leads the reader through the questions rather than provide the answers, because I think it's easier to consider these questions from the outside rather than in the middle of the crisis. I don't think my character will have a clear idea of what to do, either.
I'm writing a few sketches while planning (yes, not my normal approach!) an outline to work on. One thing I'm using from A363 is writing a proper outline, so I'm starting with a table following the three strands. One is the mother and child's story, one is the last eleven days of her life, and the third strand is the consequences of suspicion that she may have hastened or attempted to hasten her daughter's death. Now all I have to do is write 1000 words a day for three months... like I have nothing else to do...

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