A girl called Susan has been a part of my life for the past year. In recent weeks, as I have been immersed in her history, I almost felt I really knew her.
Susan died more than thirty years ago, aged 22, of a rare degenerative brain disease called cerebral lipidosis. This is an umbrella term for a group of diseases, the better understood of which are named after the person who first described it like Tay-Sachs or Batten disease, though Susan’s was never definitively categorised.
Just over a year ago I was asked to help Susan’s father Les, now in his eighties, write her life story. The research was slow, mostly interspersed with other jobs, and there were false starts to negotiate and red herrings to dispose of. Les was convinced Susan died from complications of mumps and not from an inherited condition, as cerebral lipidosis is, and one that requires a defective gene from each parent at that.
Slowly I have built up a medical picture with the help of a few doctors and an awful lot of medical records. Now I’m working on the human story, based on memories from Les and others who were Susan’s friends and on the canon or writings left behind by her mother Norah.
It was not unreasonable to blame the mumps until this explanation was ruled out by medical evidence. Susan’s path downhill, from a happy, bright and high-spirited ten-year-old, appeared to have its root in a bout of mumps. As she recovered from the infection her parents saw her movements become jerky, her speech slur and her academic performance plummet. As the years went by she got worse, dropping out of school after school as she became more disabled.
She was only correctly diagnosed at the age of 18. Cerebral lipidosis is a death sentence – no one recovers even today. And even today, a diagnosis can take several years to obtain. The only option left to parents of such children is to prepare themselves for the worst possible outcome. Les and Norah’s experience illustrates starkly how this disease operates: it teases the sufferer as a cat plays with a mouse. Susan’s condition permitted her a stretch of normal existence and then cheated her, snatching her hard-earned gains, reversing her development and finally robbing her of life.
Norah’s diaries bring to life a short period covering the few months after the diagnosis. Everyday occurrences are meticulouly recorded in a small, neat hand: the timings of Susan’s waking, eating and sleeping, the friends who visited or rang and the family’s efforts to overcome the restrictions imposed by life with a housebound daughter.
And yet until she was nine or ten she could have been any child. I find it hard not to be haunted by her small face grinning out at me from drawings and photographs, eyes sparkling, mischief just out of sight. She might have been one of the school children performing songs in church yesterday alongside my son, himself ten. I thought I glimpsed her thin shoulders jostling in the childish throng, her arms shoving her friends as they swayed playfully in time with the music, her high voice taking a lead in jokes and pranks. She would have been watched fondly by parents in the congregation.
And by now she would have been a mother herself, like me. Except she wasn’t.
After my mother died I was clearing up her papers, and found the letters, school reports and photos of my Aunt Lottie, who died in East London at the age of thirteen in 1928. Even now I find it very hard to read her letters, sent from her ward on Whip’s Cross hospital, that fill the tiny sheets of paper.
I have a lovely photo of her sitting on a swing, like Susan she has an impish smile, but like Susan she had no future ahead of her. It is easy at times for us to take our lives for granted and to get problems out of proportion so perhaps then that is Susan’s and Lottie’s task, to look at their photo’s, remember their only too short lives and do what we can, not just for today and tomorrow, but for them as well.
Comment by Fr Peter — July 15, 2008 @ 12:09 pm |