Today, a short story with a long attachment. The story tells what happened on the day of the diagnosis. The longer attachment describes how the bulbar version of motor neurone disease / amyotrophic lateral sclerosis is affecting me, more than 12 months after I first detected a problem. It might not be comfortable reading but it’s an accurate account of life at the moment. The attachment is here. Any further updates on that will be much shorter. The story is below.
It was Thursday 4 July 2019, I’d had a number of tests, and I was going to get the results in a London hospital some distance from where I live. Consultant neurologist Dr B was calm, kindly, professional and with clear sympathy. She told me it was MND. We discussed broadly how it would effect me physically, and perhaps emotionally, and the pace of change, some palliative measures, resources in the British system that could help, my life expectancy and so on.
There were answers to everything other than pace of change and life expectancy: each case is different and no one knows. Various averages are bandied around – 50% die within 2 years of diagnosis (but individuals are diagnosed at very different times in the illness); or within 5 years; but then there’s always Prof Stephen Hawking with over 50 years. So, little or no indication was possible regarding the months or years ahead.
I remember being completely calm too – no shock or panic or depression or anything like that, and that’s how it’s been ever since. If you’re forced to be involved in something that’s inevitable, then for me it has to be turned into a project: an assessment of resources, the development of suitable immediate and future plans, and then actioning the measures needed to implement them. That’s what I’ve been doing ever since, and this blog is now part of it.
I walked part of the way back, had a snack, phoned some friends, caught a bus for the rest of the journey, and then sat at home thinking about it for a few hours and adjusting to the prospect of a rather different future. In the late afternoon it was time to jump into a smart suit and tie.
That evening I was hosting an event for 12 people in a private room in a St James’s club: a discussion dinner on the theme ‘Have Books Had Their Day?’. Our guest was Sir Tim Waterstone who of course founded the Waterstone bookshops known all over the world. I was in charge of the evening, making sure in as gentle a way as possible that the round-table discussion stayed on track and that only one person spoke at any one time. It was to be a 100% communal evening with everyone having the chance to contribute. It went well.
The problem, though, was that a few hours earlier I had been told that inside me was a particularly cruel, untreatable, creeping, terminal illness. I was also slurring my words, and eating and drinking cautiously and awkwardly. How to manage that? No point in shocking fellow-diners, so the answer was Humour: I mentioned at the start that there was a voice problem and assured everyone that I’d not been in the bar for the last two hours .. perhaps only one hour … That was enough: some laughter after which we had a very fine discussion, both light and serious, as we ate and drank for the next few hours. A Good Time Was Had.
Nevertheless I was relieved to get home later that evening. It had been quite a day.