Back in January 2015, I went to see the film, ‘The Theory of Everything’. For over two years I had known that there was something very wrong with my body, but after numerous visits to doctors, and several tests and scans, I was still looking for a diagnosis. As I watched Eddie Redmayne (playing the part of Stephen Hawking) struggling to pick up coins from the floor of his Cambridge study, and tripping over his own legs as he walked to a lecture, I became convinced that I too had Motor Neurone Disease. I was given my diagnosis three months later.
One of the most difficult things to get your head around when you are told that you have MND is the fact that the prognosis is so bleak. I well remember my sense of desolation when I read that my expectancy of life beyond diagnosis was only about 14 months. My MND clinical nurse, however, told me that every case is different, and then she said, ‘remember Stephen Hawking.’ At the time, I didn’t really find this very comforting, but I did begin writing a blog about my experiences with the disease that I shared with the great man. I found that writing each day gave me a routine and a focus that I couldn’t find in any other activity - and I have never stopped.
There is no doubt that for newly diagnosed MND sufferers, Stephen Hawking’s longevity can be both a source of inspiration and a cause of sheer frustration. ‘If he can defy the odds, why can’t I?’ Alternatively, one might say, ‘Why should he survive for so long, when I will probably be dead within two years?’ I certainly had both of these thoughts, and I know others who have felt the same way.
Stephen Hawking was, without doubt, one of the greatest physicists the world has ever known, and his writings will shape the way the universe is viewed for many generations. It was his book, ‘A Brief History of Time’ that rocketed him to stardom. Published in 1988, the title made the Guinness Book of Records after it stayed on the Sunday Times bestsellers list for 237 weeks. It sold 10 million copies and was translated into 40 different languages. The fact that he achieved this, and so much more besides this, whilst battling with a disease like MND, is quite extraordinary.
My blog has recently been published as a book, called ‘Death Sits on my Shoulder.’ I make no apology for the less than optimistic title, because that is the reality of living with a terminal illness. However hard you might try, you are always aware that your time could be up soon. There is no shying away from the inexorable losses that come with a disease like MND, and the physical and emotional challenges that each loss can bring. It is possible, however, to take the positives from the situation.
Looking back to the time soon after his own diagnosis, Stephen Hawking once said, “Although there was a cloud hanging over my future, I found, to my surprise, that I was enjoying life in the present more than before.” This might sound implausible to most people, but I can certainly identify with his sentiment. MND has taught me to focus on the here and now; to appreciate things that I used to take for granted, and although there have been times when I have thought that I didn’t want to go on, I am, for the moment, very glad to be alive.
If you live in Scotland and want support, or want to do something to help, contact MND Scotland at firstname.lastname@example.org or call 0141 332 3903, or visit mndscotland.org.uk.