A love letter to my unborn child
A lifelong and remarkable defiance of the odds has been an inspiration to me, says
In what can sometimes feel like a sea of darkness, Stephen Hawking was a shining light for motor neurone disease sufferers. I cannot emphasise enough how important he has been to me since my diagnosis with the disease last year.
When you are told that you might have MND your head spins. The first thing you see online is that life expectancy is between one to three years from diagnosis. Fear sweeps over you.
The next thing you look for is people who have defied MND – and there was no better example than Professor Hawking. Like most people, he was told he only had a few years to live when diagnosed with amyotrophic lateral sclerosis
Doddie Weir
(ALS), a form of MND, at 22. He stuck around for more than 50 years.
That may be a statistical anomaly but you think: ‘‘Why can’t that be me too?” He was the first person that made me realise that the doctors might be wrong and that the worst-case scenario can be overcome.
But it is not just how long he lived, but how he lived. MND will take away most of your bodily functions and your independence, something that, as a former Scotland rugby international, I can barely comprehend, but there is one thing that it does not affect – your brain. Prof Hawking proved that you can still achieve truly remarkable things even once you have lost control of your body. He refused to let his circumstances dictate what he could accomplish and he changed our understanding of science. The wheelchair was made irrelevant; I just found that so inspiring.
What I have found since being diagnosed aged 47 is that hope is the best pill. If you think positively that you are going to beat it, that filters into everything you do. The day you think that MND has got you is the day the disease wins. You are trying to do things to prove that MND isn’t going to get a hold of you all the time, whether simply lifting a coffee cup, or going to the gym and lifting weights.
When it came to my diagnosis, which followed a year and a half of symptoms, I was told that I would be in a wheelchair within 12 months: yet here I am, still standing, still telling bad jokes and wearing terrible suits. You have to believe that you can influence your own timetable. I know I will eventually be trapped inside my body, but his example shows that life does not end there.
Yesterday was a tremendously sad day; for so long, he has been a figurehead within the MND community. One day, hopefully, we will develop drugs that allow every sufferer to live as long as Prof Hawking did, and to enjoy an even better quality of life. That has become my mission with the My Name’5 Doddie Foundation.
If I was to take one message from his life, it would be never give up. I won’t ever stop battling MND.