Matt Dawson, me and Motor Neurone Disease

Matt Dawson (ex-England Rugby Union captain, British and Irish Lions star, sparkly Strictly Come Dancer, long running captain on TV’s Question of Sport, rugby pundit and commentator and probably ‘much, much more’…). Met him this week at the #PowerPartTime ’17 event, celebrating people who manage to hold down a senior job ‘despite’ working part-time. He was on the list for 2017, I was class of ’16. Nice chap.

He didn’t know me from Adam as I trundled up in a wheelchair, but he was polite and smiley enough to indulge me. But I knew him, and not just from the telly. I fixed him with a steely eye (not really), and told him we were from arch rugby rival schools. Matt from the dastardly RGS High Wycombe, me from the mighty Aylesbury Grammar School. More than that, we had once played against each other. I was the proud captain of our 1st XV, he was a super-talented 16-year-old, catapulted into his own senior 1st team two years early.

It’s ironic that with multiple sclerosis playing havoc with my short-term memory and concentration, my long-term memory is crystal clear, perhaps even amplified. Matt doesn’t remember a jot of it, but he kindly listened to my 29-years-ago recollections. We’d trampled and trounced our way to the previous fixture: a 40-4 win at home. So despite now playing away and having lost all our star players – I wasn’t one quite frankly – we were confident we could put up a good performance. And indeed on a gusty day and with the wind behind us in the first half, we were solid enough. One dropped pass away from a certain try, me kicking away in defence when we might just have run and scored. Meh. 3-0 to us at half-time. The second half was a different matter. We turned into the wind and 40 minutes later, trudged off as losers, 17 points to 3. I have a vague memory of an annoyingly zippy scrum half. Oh dear.

Enough decades-old rugby banter, pleasant though it is to reminisce about my once healthy body that could run and run. And run some more. And then drink five pints and stagger around in a comedy foreshadowing of my future self.

This week also saw the passing of a South African rugby legend Joost van der Westhuizen, after being diagnosed with Motor Neurone Disease some six years ago. Matt Dawson knew him well as a rival and a friend. He wrote a great tribute to Joost for the Beeb… http://www.bbc.co.uk/sport/rugby-union/38884906

Joost himself was very humble, upbeat and philosophical about his diagnosis, approaching MND with good grace, humour and a twinkle in his eye that lasted right until the end. He worked hard to raise awareness and he worked harder just to live. There are very few diseases out there that I know for sure would be worse then MS, but MND is one of them. It kills a third within a year of diagnosis, more than half within two years. MND (or ALS), is the one you all did the ice bucket challenge a little while back and it’s cruel beyond words. At least most of us with MS can expect to live a nearly normal life-span. Maybe a year or three shaved off, and a chance of a rather icky, bed-ridden end. Not really looking forward to that bit.

But the death of Joost van der Westhuizen and so many other stories I read in the papers or online every single day remind me just how lucky I am. Sure, I’ve got MS. Sure, it’s progressing a bit too fast and scarily for my liking. But there’s so much misery and poverty and war and terror out there. And illnesses worse than mine. I reserve the right to whinge and to have bad days. But I’m not going to complain while there’s worse out there.

I’ll quote Joost in a 2013 interview I saw. I love his philosophy and I share his take on life. “I’m happy on the roller-coaster of emotions”, “I have a family and two small kids, I’m fighting for them”, “Two things we take for granted as human beings, health and time”, “[when you are diagnosed], then you realise what life is all about.”

Like Joost, but with more time to do it, I owe it to my family and to my friends to live as good and as fulfilling a life as I can. And frankly, what choice do I have, what route do I take? I’m doing my best to pursue the obvious. Happiness, love, fun. I’m doing my best.