The holiday conundrum

I’m trying to understand why I resent discussing my holiday plans with people I barely know. After all holidays aren’t private information, are they?

It was at the church fête where I shared responsibility for the children’s tombola stall with an elderly congregation member to whom I had rarely spoken until then. We had hardly sat down before she wanted to know what our holiday plans were for this year. As I tried to evade the question, we embarked on a useful digression over the differential holiday timings of my daughter’s secondary school compared with the rest of the county. But later the lady returned to the attack. She hadn’t got her answer, and she simply had to know where we were going on holiday.

Am I the only person on earth who is reluctant to be drawn into this? Deep down I think it’s the dullest conversation topic among strangers, on a par with reminiscing about the children’s TV programming of our childhood – a last resort for people who have nothing to say. At the fete with the old lady, it seemed rather early to proclaim our social failure, since we had only just sat down. Or did she need the information to pick over with other grey heads later in the week?

It might be a kind of snobbery but I don’t generally find other people’s holidays make stimulating listening, or reading. When Christmas comes round and we have to endure an endless stream of generalised letters, usually two single-spaced A4 sides of self-absorbed prose, it’s the holidays that bore me most. Beyond the experiences of close friends and family, I really don’t want to know. So why should anyone want to know about mine?

Where my old lady is concerned, it might just boil down to the vicar’s family phenomenon. In a small village you’re a kind of local celebrity and everyone wants a piece of you. This might account for people asking where I met my husband after knowing me for five minutes. From strangers, this intimate question is prurient, voyeuristic and not always well-intentioned.

And so I bring down the shutters and respond to these questioners the same way I treat those who think they have a right to park in our drive on a Sunday: with the defensiveness their intrusive behaviour deserves. I might appear rude when I ask why a person wants to know such things, but sometimes that’s a risk I have to take.

When I turned the question on my old lady, she told me she had already been on holiday. And in case you’re itching to know, I’m sorry, I failed to ask where she went. It was a good fête by the way.

Haunted by a memory that isn’t mine

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.