I have been away visiting relatives and met-up with a brother-in-law who has spinal muscular atrophy, a degenerative illness that affects the link between the brain and nerve fibres so that instructions cannot be passed to the muscles. The muscles cannot be used and thus atrophy.
He can walk a short distance, on the flat, by hauling himself with the aid of stick but cannot negotiate even the smallest of steps and he can only get down stairs by sitting and then bumping himself down, like an infant. Over the past six months his condition has worsened considerably and it is very distressing because he no longer trusts himself to go out by alone and feels himself a prisoner, someone who has been robbed of independence. Everything is made much worse by depression.
We probably made matters worse by trying to be helpful - suggesting place he could go with good disabled facilities and mentioning someone with his disease who gone to the Arctic to raise money and awareness. The first topic was not too bad but the second was a mistake as his shoulders visibly sagged. Such tales of adventure were demoralising rather than inspiring.
“There are all these people who seem to be able to do all these things ......” He trailed off lost in thought about his inability to get out of the house, feeling defeated all ways round. Not only did he have his own difficulties there was the thought of other people coping with more vigour and adventurousness. It is bad enough being ill without taking on extra guilt for not doing enough.
I said something vague like 'he could only do what he could do and he should no pay attention to the achievements of others' but it sounded a bit woolly and well-meaning. I wanted to make feel a bit more real by relating it to running where I know there are people capable of times I can barely imagine and there are all sorts of people I cannot get near. But I can run a race at my own pace and be satisfied or disgruntled according to that standards. There are always little markers I can use to judge how well I am doing, little things that can be achieved. I wanted to say this but I didn't because I was self concious about talking about running to someone losing the use of their legs. It did not seem like a brilliant topic of conversation. I also did not want to talk about myself.
I hate to admit it on this blog but there are times when running just seems like a diversion; it doesn't seem that important. But having said that I went for a nice easy 10k today and felt that warm glow of satisfaction. Running still feels like a good thing to do. However I did spend some of the time thinking about how messages are sent to the muscles and how we control all the adjustments needed to keep our balance and move forward. There is no way I could make any sense of it.
How grateful I am to be able to take such movement for granted.