The Euan MacDonald I knew

Like many remarkable people, Euan MacDonald chafed at the suggestion there was anything remarkable about him at all. He happened to suffer from motor neurone disease (MND) but for more than 20 years he refused to be defined by his condition. MND might confine his life but it could not dominate it to the exclusion of all else.
Thanks to the efforts of campaigning giants such as Doddie Weir and Rob Burrow, MND is better understood, or rather better-known, than was the case when Euan was first diagnosed, at the age of 29, a generation ago. Terminal conditions may, at root, all be alike but each has their own particular horrors. Despite the heroic efforts of researchers around the world, MND imposes a pitiless judgment to which there is no right of appeal. There are no miracles here, no points of hope, however improbable, that might offer a way out.
If Euan grumbled about his fate, he largely kept such frustrations private. His initial prognosis, delivered in 2003, intimated that he might, if he were lucky, have two years to live. He stretched that to more than 20, a feat of resilience so considerable it sometimes took the breath away.
Last week, just days after turning 50, Euan’s race was finally run.
• Euan MacDonald obituary: MND fundraiser and disability champion
During those years of illness he was a doughty campaigner for MND research and for disabled people more generally. With his sister Kiki, he established Euan’s Guide, a website that offers detailed, user-driven information on disabled access for thousands of venues and public places across Scotland and beyond. With his father, Donald, a pillar of the Edinburgh business community, he helped establish the Euan MacDonald Centre for MND research at the University of Edinburgh.
In the years since, working in collaboration with the neighbouring Anne Rowling Regenerative Neurology Clinic and drawing on the expertise of researchers and clinicians across Scotland, Edinburgh has become a hub of worldwide significance in the investigation of, and search for cures to, MND, multiple sclerosis and other neurological afflictions. Solutions remain elusive but clinical trials on a range of treatments are either in development or already underway. Here at last, there is the potential for hope.
It is trite to say a condition such as MND does not discriminate but what Euan understood, from a very early stage, was that it does not matter who you are but only what you do. He met his circumstances head-on and the fortitude with which he did so was both humbling to the rest of us and, we suspected, unusual to the point of rarity.
We met for the first time in early September 1987. At school we called him “Trouble” but in truth this was lightly borne. It was Trouble with a twinkling eye and a sense of mischief free from any of the malice sometimes associated with exclusive educational establishments. That sense of fun, coupled with a certain thrawn determination to see matters through, never left him.
We played on the same rugby team; he was a lightweight but rangy No 8, I played behind him as scrum-half. We agreed that 3rd XV rugby was the gentleman’s level, it being the highest level of the game that could be reached with the least amount of effort. Like chapel and the cadet force, rugby was compulsory and, consequently, not to be freighted with more seriousness than it could bear. Seriousness, instead, was to be confined to the upper echelons of sport. We concurred that when it came to Scottish rugby, the 21st century has been unkind. The situation has usually been serious and often hopeless too. But if age brings anything it is a sense of perspective.
He was, he would admit, lucky. Lucky to come from a family of means and fortunate to enjoy the support of parents, siblings and his wife Liz, whose lives, inevitably, became inextricably entangled with, and sometimes dominated by, Euan’s condition. Their sacrifices were many, though of no greater degree than would be the case for any other family required to live with, and make allowances for, the creeping and ever-greater demands of a terminal illness.
Self-pity was banished. If courage is defined by a clear-eyed appreciation of an awful fate then Euan was one of the bravest people I, and many others, ever knew. If some of us left it too late to tell him that, that may reflect poorly on us. It certainly says nothing about the manner in which he grappled with his own inevitable diminishment. Medical science will break through eventually and those victories will be built on the fortitude of those who, like Euan and Doddie and so many others, helped to pave the road to that better future.