Peter, a good friend of mine, who’s had PLS (the same sort of Motor Neurone Disease as me) for five or so years longer than me, not unnaturally gets tired and fed up with it. We try to cheer each up with jokes and encouraging stories.
Last week he sent me this short conversation.
Wife: “So, what did you do today?”
Husband: “I changed a light bulb.”
Wife: “And that’s all?”
Husband: “Yes – and I had a drone film it.”
Then comes a YouTube clip. It’s a film taken by a drone of an engineer climbing a 1500 foot high communication tower to replace the light bulb at the top.
It’s worth a viewing. Click here to see it.
It occurred to me that it is quite a good parable of what life is like with MND. A simple job becomes a massive task. Some tasks become impossible, despite your skilled support team of carers, physios, OTs, nurses and doctors. For example, getting to the toilet is a major and potentially hazardous operation. Eating a meal is hard concentrated work. Not that I’m looking for sympathy. Like the engineer at the top of his 1500 foot TV mast, a task completed brings great satisfaction, and sometimes a view can be breathtaking.
This of course is not only true for people with MND. I have friends with ME for whom any exertion comes at great cost. And I'm sure it's also true for those who suffer from depression. Climbing from the black pit is more than they can bear. Surely you deserve a celebratory video when you make what others might regard as a minor achievement, your own "light-bulb moment"! Perhaps we should share them as well.
(This post is dedicated to my friend, Peter.)