Brothers And Sister

Facioscapulohumeral muscular dystrophy (FSH) is a condition that affects both men and women equally. The chances of inheriting it from an affected parent is a straight 50/50. I know this from reading the literature and from personal experience. My father had the condition (misdiagnosed as Polio as a child) and of his 4 children, 2 of us inherited it. (See post Up Up And Away for more about FSH and inheritance.) There's me, Stephen, the oldest, with the condition. Then my brother, Simon, with out the condition. Next comes Mark, with FSH, followed by little sister, Helena, without it. Gregor Mendel would have been thrilled.

Growing up in a family where fully half the members are disabled seemed, at the time, perfectly normal. You can hardly play the 'I'm disabled, pity me' card if 50% of the family are in the same boat. We were all expected to behave as well as each other and there was no sense of favouritism or lowering of expectations. As I've grown older I've come to appreciate just how stable my family was. I have no wish to idealise the situation but if you had to grow up with a disability then ours was the family to do it in. At some point I know I'll write about my mother and father but just for now, let's concentrate on my siblings.

I am inordinately proud of my brothers and sister. They endured the same uninspiring education as I did and have each gone on to be very successful in their fields. Hartcliffe Comprehensive school in the 1970s was not renown as a beacon of academic excellence. I know for a fact that at least until recently we were the only family of four children who attended the school to all have graduated university, let alone with a total of 2 Doctorates, a Masters degree and a lowly Bachelors degree (mine). Proud? You bet I am.

Simon (PhD in Computing) is a something complicated to do with computers that involves him flying all over the world, He is married to the lovely Jaspreet, and has two sons. Mark (PhD in Disability) has carved out a niche in the disability employment sector. He serves on DEAC (Disability Employment Advisory Committee) for the government. He also travels all over to lecture. My baby sister, Helena (MA in Personnel Management) is head of Human Resources in Asia for an oil company (Hess). She lives in Kuala Lumpur with her husband, Andrew and their two sons. Not bad for a group of kids from Hartcliffe.

I'm sure that we each have different memories and perspectives of growing up with Muscular Dystrophy, how it affected and shaped us as a family. There were fund-raising days, the occasional sadness of a friend or acquaintance passing away, and the annual MD Christmas parties

Ah, the Muscular Dystrophy Christmas party. An annual get together held in a prefabricated hall where we sat at trestle tables and ate party food, played bingo and watched, joy of joys, Woody Woodpecker cartoons. Someone would sing Tom Jones songs and eventually, just as the tension became unbearable, the sound of jingle bells would be heard and a gruffly west country “ho ho ho” heralded the arrival of no less a personage than Father Christmas.

This is where my memories and those of my brother Simon's differ. As Father Christmas doled out presents we waited in breathless anticipation as names were called out. He maintains that Mark and I were given colour televisions while he got a balloon. The truth, I seem to remember, is that I always seemed to get a Soccer album, Score 1973 or something, while Simon got a toy of some kind. (Mark and I only ever got one television and that was from the Young Farmers. It was very embarrassing.)

If for some reason you would like to read a little more about my teenage years, then have a look at Rock God's post My Tone Deaf Mate Won TWO Ivor Novella Awards. Some of the story is actually true.