Words by Alex Francis – Illustration by Frederick Saunders

A little over a year ago, I stood with my wife Laura on the start line of the Trans-Alpine Run (TAR) in Garmisch-Partenkirchen, Germany. We were nervous and excited – this would be the first stage race either of us had attempted and we’d picked a big one: 255km over the Alps spanning seven days, with terrain and climbs beyond anything we had previously experienced. The town was buzzing with the emotional energy of 300 pairs of runners raring to start their epic journey.

The route took us through beautiful, varied and challenging scenery. We pushed on up climbs that seemed as if they would never end; coped with scrambling above huge sheer drops; crossed scree fields, bus-sized boulder sand a glacier; stood at the top of the world wondering how on Earth a path could safely deliver us down again.

Every day showed us we could do things we had previously believed impossible

We met some extraordinary people who became friends through this short, intense experience we shared – the memory of those smiling, glowing faces will stay with me. Each stage took us to a new village which would host a mass pasta party, complete with the leaders’ can-can dance on stage. Each morning kicked off with a blast of Highway to Hell. The time between ending one stage and starting the next was a madcap scramble to complete kit admin, eat, attend the briefing for the next day and (with luck) squeeze in some sleep. As the days passed, we all began to wear down, but also to relax into the process of the race. On we went until the finish in Brixen, where we finally clambered into the fountain to soothe our tired legs, crack open a beer and toast our achievement together.

On the coach back to the start, talking over what we’d been through, we both found ourselves determined to find a way to return. A lifetime high: this one was worth coming back to.

I want to be there for the hard times, the great times, the ordinary times

Six months later I had to quit running.

I had a suspicion something was wrong before the TAR – I had been tripping over a lot on long runs. As summer turned to autumn I realised my fitness was getting worse; the final three races of the year were progressively more disappointing. I was absolutely gutted and didn’t know what to do about it. I saw a GP and got blood tests but they were all clear.

I had also spotted a “foot drop”: I couldn’t seem to flex my right foot up from the ankle. It didn’t occur to me that this was related to everything else, but this one symptom took me to a sports physio, then via GP to a consultant, MRI scans and finally an answer. In the meantime five more months had passed, during which I had been stumbling so often I stopped running, had two visits to A&E from falling and had noticed an alarming muscle twitch in my legs and arms.

One morning in late May I stepped into a neurologist’s office with Laura by my side, still hoping for a simple explanation and looking forward to a time when I’d be “fixed” and able to start training again. I waited impatiently as he took me through a physical exam and studied my scans, then enjoyed a moment of optimism as he ruled out Multiple Sclerosis – this had been my worst fear – only to hear the words: “I’m afraid you probably have Motor Neurone Disease.” We walked out in total shock.

I hope you never have to encounter this disease. It means progressive loss of voluntary movement, in my case starting with one leg but now spreading to my hands. I can expect to lose the ability to walk, sit up, hold my head up and eventually speak, swallow, breathe. My death will most likely come within three years. It is rare, but not all that rare – a one in 300 lifetime risk. A healthy lifestyle doesn’t seem to reduce your risk, in fact athleticism may increase it. There is no cure, it progresses unpredictably and there is very little you can do to slow it down (one drug, Riluzole, extends life by two to three months).

So… I am a runner no more and the clock is ticking loudly. Before this diagnosis, I believed I was taking good care of my body – staying far fitter than most, eating well. I imagined I had a lot of time and I had plans. Some running goals, of course – apart from wanting to go back to the TAR, UTMR looks very appealing – but I’m also a husband, a father, a son. I want to see my kids grow up. I want to be there for the hard times, the great times, the ordinary times. I want to help them become independent. I imagined a time post-kids when I’d be able to travel with my wife the way we used to. Without being conscious of it, I’d stored up hundreds of thoughts, big and small, about my future.

I have had to let go of all those ideas, every tentative plan. It is still possible I could live another 10 years or more, but the odds are stacked strongly against me. Life has become a subtle balancing act between holding a tiny flame of hope, accepting the cards I’ve been dealt and choosing joy, fun and shared experiences with those I love whenever I can.

I can’t run any more – walking is becoming tricky – but with a loving nudge from my wife, I’ve started to explore new ways to be outdoors and active. Getting started with open water swimming has given me a huge boost and through this I’ve met some uniquely inspiring people: Richard, with many strings to his bow, is teaching me to swim front crawl and regaling me with tales of pro sportspeople he has helped through “impossible” recovery from devastating injuries; Sasha, who lives with MS, has challenged me to try hand cycles with her at a local bicycle circuit. It’s been a pleasant surprise just how many people want to help, or simply connect, and I feel gratitude for this every day.

Finally, I have a new sense of purpose in raising awareness: this nightmarish disease need not remain untreatable. Knowledge is advancing with each new research project. More funding is needed to accelerate research towards a cure.

Alex’s family have started this crowd-funding to help Alex to continue to live at home. Please support if you can:

Support Alex and his family The Motor Neurone Disease Association is the UK charity for MND/ALS and sponsors a wide range of promising research, supported primarily by donations.
Support the charity

Alex Francis is an urgent explorer of the meaning of life and identity. Father. Ex-runner. Conspirator in crazy plans. Founder of DEKA (“Where are you going?”).
Twitter: @alexfrancis / Instagram: @capn_sensible / Medium : @alexfrancis

Frederick Saunders is an illustrator / animator, constantly striving to find more time for drawing and less questionable lifestyle choices, but often finds that there is a long list of other things he should be doing instead and inevitably ends up doing nothing. www.fredericksaunders.com
Instagram: @frederick1800

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