'I am struggling to think if I know a finer human being' – Neil Francis talks to Doddie Weir

A long time ago I played in a Major Stanley’s International XV against Oxford University. The match was a last blow-out before the Varsity match at Twickenham. The Major Stanley’s XV was packed with internationals but the special guest star was the 41-year-old Andy Ripley — you are just going to have to google him. Ripley was still a phenomenal physical specimen and had that special Willie Duggan ability to ghost into a dressing room with 20 minutes to go before kick-off.

“Laces?”

“Yes laces.”

Quite difficult to do — to do the difficult thing and remember to bring the boots but just without laces in them. I did have some laces and we clicked.

As we packed down for the first scrum I could hear someone singing. Ripley sang and hummed his way through the match. Such was his easy virtue that you could now see why this man could do almost anything. An eccentric stream of consciousness in every conversation. An exemplar personality and one of the sharpest but understated intellects I have ever met. A gracious exception and an unaccommodating maverick.

I met him numerous times in the City of London. He wore a bowler hat — you don’t wear a bowler hat if you have a Woodstock hairstyle.

He was unique but never really gave it much thought.

Andy died of cancer in 2010. A month before he died, Prince Charles bestowed upon him an OBE. Photographs were taken at the ceremony of Ripley — a virtual cadaver sitting in a wheelchair, the cancer had got into his spine and gone further up to his optic nerves — he was blind. It was pitiful to see the corporeal essence of noblesse oblige sitting in this chair. He should and could at 62 still have been gallivanting around those fields in Oxford humming Elgar’s Pomp and Circumstance.

This is not how men of such calibre should expire. Ripley graciously accepted his fate but the bitter sting was the wasting of his body. The fall into the abyss is every bit more pronounced when you are a prime athlete standing 6 foot 5.

He had, with cancer, a sporting chance. The subject of this piece does not.

Doddie Weir, a man so tall he barely fits his circumstances; like a lot of big men he finds refuge in self-deprecation. It is a cosy asylum.

Weir spoke at a sold-out MND dinner held in his honour last week in the Shelbourne Hotel in Dublin. He has this facility of saying outrageous things and getting away with it. He told the story of having to tell his team-mate and good friend Gary Armstrong that he was seriously ill.

“Gary, I have MND.” There followed a long silence. “Gary, did you hear me? I said I have MND.”

“F**k it, f**k it, I’ll have to concrete in the driveway.”

“No! No! I am ringing to tell you that I have Motor Neurone Disease.”

“I heard yee, I heard yee! I’ll have to pay the ‘Mon’ to fill the potholes in my driveway so you can get your electric wheelchair into the hoose.”

Black humour it seems is the only antidote to this grim predicament.

I met Doddie in Newcastle for breakfast the day after the Heineken Cup final. We hadn’t seen each other in quite a while but you know a friendship is intact when you just carry on from the last time you were talking to each other. The Indo had given me a digital recorder but I’m a columnist, not a journalist. It was supposed to be podcast quality but there was music, cutlery clanking, slurping of coffee and interruptions from well-meaning fans in the background.

Kathy, Doddie’s wife, came to join us in the middle of it. For the purposes of a podcast it was a disaster. To get an idea of him and his mood it was fantastic.

He told me that he was told that he would not walk into the doctor’s consulting rooms a year out from his diagnosis. A metaphorical two fingers pointed at fate — the unrestrained joy of a little victory. He is around nearly three years later and still walking. The disease got one back when Weir fell at home in February and smashed his head badly and punctured his lung. An icy reminder from his foe of just how fallible he is.

Doddie is not particularly religious but there is a reverence for who put this whole ensemble together. He recounts the story of a bad motor accident about 20 years ago on a treacherous road late at night. Weir had no right to survive a catastrophic collision but walked away out of an upturned car with only a bruised hip — shaken not stirred!

Many of Weir’s friends have “left the planet” and the “Big Mon” he felt had done a deal with him.

“Right Weir, you were lucky before so I am not asking you to see me right noo! Go out and sort that MND oot. I don’t want to see the ‘Big Mon’ so that is my mission.”

That mission is road blocked with apathy and inertia. “There are  500 ‘special people’ in Scotland out of a population of five million — we disappear quick Frano.” One-hundred-and-fifty new cases in Scotland every year, 130 in Ireland.

Work the statistics here — there is a reason why giant pharma has been slow to engage — there aren’t the numbers, there isn’t the scale. There are no altruistic pursuits in this industry. What do they tell the shareholders when they have spent billions and still no cure.

Weir reckons gene therapy is where the break will come because the disease is so complex. How though do you explain that there is only one drug formulated in the last 25 years and it prolongs life only by a matter of months.

Professor Orla Hardiman, Professor of Neurology at Trinity College Dublin, a very likeable pragmatist. The sense of frustration is palpable in  that a life’s work could draw to a close and yet she hasn’t even got out of her ‘22’ yet. Hardiman recounted the story of a concentrated trial with 3,000 MND patients over a seven-to-eight-year period. The depressing conclusion from the whole study was that not one significant path forward was found. They don’t even know why they failed.

Another initiative is TRICALS — a pan European Treatment Research Initiative to cure ALS, or Amyotrophic lateral sclerosis, the medical title for MND. Raise enough money (€800k in Ireland) so that everyone with MND will have the opportunity to participate in high-quality clinical studies. Failing that an introduction to Bill Gates or Tim Cook. All programmes are underfunded to a depressingly familiar degree. Hardiman’s quest, like that of her patients, is frustrating and difficult.

Meanwhile, amid the muted bonhomie at the RMN (Research Motor Neurone) dinner in the Shelbourne last week the Weirs, Kathy and Doddie, are embarking on the foothills of a test of courage, their capacity to endure the everyday ordinariness of living with MND tested at every turn. The distressing and heart-rending sight of Kathy cutting her husband’s dinner into manageable pieces and feeding him in a room of 300 souls and doing so as if they were the only people in the place. It is equally difficult to consume your own dinner when you are welling up.

Keith Wood, who had been at the dinner, rang me the next day on his way back to Killaloe. Nobody psychoanalyses me better than Fester. His prognosis that I was, behind it all, an emotional person. It is hard to be dispassionate or emotionally detached when you see what God or nature has in store for Doddie Weir.

Weir, unlike Ripley, doesn’t possess the same towering intellect or have the creative skills of the Englishman but the Scot has his own cachet. He is smart and thoroughly engaging. When we met off the field as civilians in Murrayfield years ago how could you find a chat about septic tanks and sewage entertaining?  Doddie is far from an ordinary Joe from the Borders.

His spirit is impervious to his obvious decline and he has a great capacity to replenish his inexhaustible source of renewable optimism. Only in adversity and when everything is laid bare in the cruellest of circumstance can you define his true spirit and unbreakable character.

This sort of fate should not be inflicted on our tall poppies. As Weir said about his more common falls — “It is like a great oak falling but without the branches on the tree to break your fall”.

Doddie goes to Japan for the World Cup, a competition where he distinguished himself and his “living wake” continues and his quest for some form of deliverance and a start, just a start, to the beginning of the end of this cruel affliction.

I am struggling to think if I know a finer human being.

For more info, visit myname5doddie.co.uk and to help learn more about MND in Ireland you can visit  www.mnd.ie

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