Wednesday, 26 November 2008

I feel Fine(ish)

Throughout my teens my disability was more an annoyance than a source of pain. It slowed me down rather than stopping me doing things. There were many occasions when it inconvenienced me or caused me some level of distress but largely it was something to be worked around rather than an immovable barrier to getting on with life.

Muscular Dystrophy does not in itself hurt. The gradual break down of the muscles is painless but as the muscles weaken the remaining ones are forced to compensate and that can hurt. I say this with some feeling as I have recently pulled the muscles around my left shoulder whilst performing that inherently dangerous procedure, flushing the lavatory, and the excruciating pain is beginning to impact on my usually sunny nature. But back in my teens pain was not the issue, fatigue was.

I went to a school on the edge of Bristol, Hartcliffe Comprehensive, half a mile from my home. In 1972, when I arrived, aged 11, Hartcliffe was reckoned to be the 3rd or 4th largest school in the country with more than 2,400 pupils. The school consisted of two huge buildings, a quarter of a mile apart on a 5 acre site. The two buildings were labelled with staggering imagination East and West. It was perfectly possible to have a French lesson on G floor, the top of the East building, follow by an English lesson on C floor, the top of the West building. A generous 5 minutes was allowed for transition between lessons. You can imagine the scene as the first bell rang and nearly two and a half thousand pupils raced to their next classroom. You can also imagine some vindictive teachers over running their lesson whilst others demanded to start theirs bang on time. To avoid total chaos one-way systems were introduced meaning that sometimes you couldn't even take the shortest route. The process was repeated up to 5 times a day.

There are many tales I can (and no doubt will) tell about my school days but here I am writing about how it felt to have MD in such a situation. Over the 7 years of my secondary education my condition deteriorated relatively little compared to what was to come later. During the early years I could still run (albeit slowly) and had to partake in PE lessons, including Rugby. I felt very self-conscious, aware of my puny physique, and went to some lengths to avoid communal showers. A good game of rugby for me was one from which I left the field completely mud free (difficult in an English winter) and without having broken sweat (easy in an English winter). I felt different but I didn't feel excluded. I had good friends.

I wasn't particularly bullied at school. This was for a number of reasons, not least the aforementioned friends. One of our group was a fellow called 'Birdy', who came from a huge and somewhat notorious clan. Upsetting Birdy by bullying his friends could prove catastrophic to a would-be thug. Think Nelson Mudd with a west-country accent, more charm and about 10. . . er. . . 'free-spirited` brothers. I also cultivated an air of mediocrity. Standing out in such an environment was rarely a good idea and I was already different enough. Over the years I developed a distinctive leg flicking gait and an inward curvature of the spine. As my facial muscles weakened my face became less expressive, which many teachers took to be a blankness and lack of comprehension, and I used this to fade into the background. I very much doubt that any of my teachers remembered me two years after I left the school.

By the time 1 reached the 6th form walking to and from school was an exhausting challenge each day. Getting an education was a fairly low priority by that time. I remember having a crisis of confidence; wondering what I was going to do next; what, literally, was going to become of me. I put off applying to Universities and half-heartedly looked for a job. I could feel myself at a tipping point. Up until now my life had had an approximation of normality. I was different, but not markedly so. I knew things were going to change, and not for the better. The reality check came when I applied for the Disabled Living Allowance (or whatever it was called back then) mobility constituent. I'd previously been turned down but now a panel of doctors labelled officially 'disabled'. They also provided a written assessment. I was barely 18 and was told I'd be in a wheelchair before I was 25. They were out by at least 2 years. I was left wondering whether life was worth bothering with.

Next time – Finding a direction.


  1. Stephen,

    Thank you for taking the time to do this. I think it is important for my friends.

    You know reading about your shoulder injury, I did wonder if you had partially dislocated it, a condition with which -as a person With Ehlers-Danlos Syndrome- I am all too familiar? I don't know if the loss of muscle mass might impact stability of the joint and ligaments. It might be something to ask your doc about.


  2. Hello
    I've been reading your blog since very early on but had problems posting comments in the past...
    Keep it up as it's a very interesting read!!

  3. After my father passed away eight years ago, I've felt lost not knowing anyone else with FSH. Thank you Stephen, it's nice coming here and feeling not so alone with this disease.

  4. I think you are doing yourself an injustice there buddy, I bumped in to Graham Hodson (Drama Teacher) a month or so back in Tesco and he remembers you vividly.

    I also remember some of the well meaning staff being a little over protective of you (they didn't seem to understand the concept of you being 'one of the lads'.
    I still remember Mr Owen (Math teacher and part time Psychopath). I made the big mistake of cuffing you around the back of the head (as boys do) and being grapped by the lapels and 'hurled' across most the desks, accused of bullying my 'unfortunate' companion.

    Im sure that inwardly you were wetting yourself with unbridled laughter....but outwardly you were a terrified as the rest of us!

    Oh the happy days of Hartcliffe school, where the men were men......and so unfortnately were most of the women!

    Oh incidentally......I still hate getting dressed in the changing rooms at the gymn...I think it scarred us all.


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