Dedicated to my uncle Andrew and his family

And all those pursuing a world free

of motor neurone disease

FOREWORD

In my daily work as the chief executive of Motor Neurone Disease Association I never cease to be amazed by the acts of courage and determination shown by people living with this horrible illness.

MND is a particularly cruel condition, for which there is currently no cure. Although not common, it kills around five people every day in the UK – a third within a year of diagnosis. It can affect people in a variety of ways, including progressive weakness of limbs and eventually total loss of movement. Almost all will lose the ability to speak, meaning that communication of even one’s most basic needs is impossible without the use of assistive technologies.

For people with fast progression they can notice worsening of symptoms every few days and this can have a significant impact on people’s mental wellbeing as more and more of their former life is taken away from them.

Of course this inevitably affects the people around them, who find their caring responsibilities increase as they are trying to come to terms with the deterioration of their loved one. We know all too well the devastating impact MND has on families.

And yet. And yet.

In the face of this adversity – or perhaps in spite of it – people find a way to cope, carry on and see the positives. To find unusual and heart-warming ways to fight back.

Which brings me to Chris and his uncle Andrew.

This book tells the story of their sheer determination not to be beaten by MND and how a shared love of running created a very positive focus in both of their lives.

As a runner and a cyclist myself, I found this story both inspiring and uplifting. If you are a runner or you know someone living with MND or if you just need a good story about courage and the fight to live your life to the full, this is a book for you.

People with MND tell us they want more people to know about the disease. Help Chris and Andrew spread their vital message by reading this book and sharing their story: a story of hope and determination.

 

Sally Light

Chief Executive

Motor Neurone Disease Association

CONTENTS

Cover

Title Page

Copyright

Dedication

 

Foreword

Epigraph

Falling…

The Singing Firemen

A Journey Without Maps

Mr Hi-Viz

Stealing Dennis

Heroes in Disguise

#UncleAndrew

The Duvet

Ordinary Magic

We All Have to Start Somewhere

London Shines

Come to Your Senses

Breathing

B is for Brave

Generation Game

Photographs

The Joy of Winter

The Man in the Red Jacket

Tom the Blacksmith

Brighton Rocks

Sting in the Tail

‘Keep Going,’ He Said

Invisible Lines of Chalk

Beyond Measure

The Surprise of Spring

Tiger in Preston Park

One Day

Champagne

Boston Speaks

My Uncle and the Tree

The Magic of Movement

Rising Again…

 

Acknowledgements

About the Author

 

 

 

 

I realise this is it! My feet on the puddled road, my hands clenching the wheelchair. I hear the sound of my breath, rasping and keen; and the sea, clawing at pebbles, sucking them back into itself. This is our moment, our chance. This is what we came here for. I grip my uncle’s shoulder and say it as loudly as I can, above the chanting sea and the cheering crowds, ‘This is it, Uncle Andrew, THIS IS IT!’

 

Brighton Marathon, 14 April 2013

FALLING…

I collapse to the ground. A lady at my side gasps. A child points his finger at me. I look up and see the digital clock ticking… ticking… The finish line of the Beachy Head Marathon is within sight, at the bottom of a steep 60-metre hill. Beyond that are more Sussex cliffs with October sunshine spilling gold upon them, the horizon, and then who knows what? My uncle Andrew inspired me to attempt this race.

‘It’s one of the toughest in England,’ he’d told me earlier in the year. It used to be his favourite race when he could still run. Right now it looks as if I won’t quite make it.

Just a few weeks before today’s race, an ambulance had rushed me from home to Warwick Hospital, its sirens waking my neighbours. That’s when a doctor told me I might never run marathons again.

‘We need to work out what’s going on with your heart, Mr Spriggs.’

I may have looked over my shoulder to check with whom he was talking. This wasn’t a conversation on first-name terms. It was serious.

‘We think you may have had a mild heart attack,’ he said, his hands lost deep in his pockets.

It appeared, from the electrocardiogram readings the paramedics had taken at my bedside, I had some sort of ‘right bundle branch block’. It sounded like tree surgery, but it was my heart that was under examination. Apparently it wasn’t ticking… ticking… like clockwork. The doctor stared at me as if listing in his head all the scans and procedures I was about to go through, and the kit list he would have to summon. The needles and swabs, the pads with wires, the pumps on trolleys. He sucked his lips, keeping some knowledge back, then turned abruptly and walked away. Then with a practised flick of his wrist he wrenched the cubicle curtains, causing them to screech along the metal pole like an impending car crash. He was putting me away for another time. I felt scared. I confess I was mostly scared my marathon-running days were over. I decided I shouldn’t tell him I had ‘one of the toughest in England’ coming up within the next month, not until I knew more. Not until I knew what he kept in those pockets.

Lying here on the crumbling turf of the descent toward the finish line, my mind and body are in argument, millions of neurones gossiping possibilities about what is happening. The internal interrogation escalates: Why have you hit the ground? What’s this about? Do you have the strength to continue? What’s going on with your heart? Will you reach the finish?

Life is full of the unexpected. Not everything is as it seems.

So I have written this story. It’s not ‘Seven Steps to the Easy Life’, neither is it a philosophy textbook, it’s a story, and I accept it’s my version of real events. Let me explain.

One day not so long ago my uncle Andrew was a marathon runner. It was part of Who He Was and What He Did. He ran distances longer than marathons, too, as if the finish line came too soon, so he’d go the extra miles. Literally, he’d just keep running. But then the lights went out on that phase of his life when something happened called motor neurone disease (MND). MND is a devastating life-limiting illness with no known cause or cure. Once it begins, there is no rewind button. The ability to move limbs and fingers and even control the tongue just fades. The strength to speak often closes down, until finally the body can’t breathe. The end is coming way too early for him.

Uncle Andrew and I are ordinary men, easy to miss if you walked past us on the high street. We are not talented or spectacular runners, but we know the gifts that running brings. Our attempt at a marathon together, my uncle in the driving seat of a standard NHS wheelchair (because the illness means he can no longer run), and me behind him, pushing all the way, is the golden thread throughout this story. Our pursuit of ‘one last marathon’ for him became a joy for us in the context of unexpected and unwanted news.

One last marathon. But it didn’t turn out that way.

So, who is this story for? It’s for those who run, whether for a bus, or from the rain, those who huff and puff around the block, or are perhaps training for a marathon, or something else. There is a ridiculous pleasure to be found in escaping from under the duvet and daring to step out into the world. A strange metamorphosis occurs when you put one foot in front of the other, even when the way ahead seems unclear or beyond your capability. Running is hard; it can feel so alien in a comfort-obsessed society, but it often brings unexpected gifts. When you run, you change. Your world turns differently.

Running is one way that many people have reset their paradigm, their set of beliefs about themselves, learning to think differently about the chaotic and colourful circumstances in their lives. To begin to make sense of a world which is fragile, complex and sometimes nuts. Of course, running is not the only way you unfurl your sense of who you are in the world – perhaps walking up a mountain clarifies your perspective, or cycling restores your momentum, or swimming helps you reach for more. Whatever you most readily relate to, running is an activity most of us have done at some point, even if years ago down school corridors when no one was looking.

When you think about it, our language is rich with running idioms: the human race; pace yourself; the finish line; go the extra mile; hit the ground running; emotions running high; when your luck runs out.

Running is on our lips even if it’s not in our legs.

This story is also for anyone who has ever faced a struggle that’s threatened to squeeze the joy out of them. A loss, a heartbreak, a full stop in life where they’ve felt S.T.U.C.K. One of the messages of this story is that, however stuck you are, life is always moving, you are always changing. Your mind, body, surroundings, none of it is on pause. Amid struggle, you can find stillness. From stillness, flows clarity, then determination. And from determination, hope can be rekindled. With hope everything becomes possible.

There are questions woven into this story: Why do people run and what does it mean to them? What does coping with difficulty look like? How do people come together when tragedy tries to tear them apart? How do people start to make sense of the difficulties they encounter?

As philosopher Albert Camus wrote in L’Étranger, ‘I finally learned that in the depths of winter there was in me an invincible summer.’ To reach towards this ‘invincible summer’, we will listen to French firemen singing on the run, hijack a stranger from his seat during lunch hour, and race a Great Grandma at top speed around a medieval castle courtyard. We will search for a blacksmith in the snowfall of winter, chase after lorries in torrential rain and sprint along a wind-battered coastline with an air horn.

Why? Because now is not the time to give up.

THE SINGING FIREMEN

Although the world is full of suffering, it is also full of the overcoming of it.

Helen Keller

It happens at 3 a.m. on a June night. It’s too warm to sleep. I’ve wriggled so much the duvet looks like a massive reef knot. News of my uncle’s diagnosis has been on my mind for a few months, but what happens in the night is not rational. It’s like this: one moment the idea is not there, the next it consumes me. It arrives like an axe splitting a tree, sudden, with no chance of reversal. I suddenly see that Uncle Andrew’s running days are over but his racing days do not have to be.

Lying in bed, staring at the ceiling, a solitary moment comes back to my mind, an experience which stands out from all the others the day I ran the Paris Marathon 2 years before. A moment more prominent than the exuberance of the start with 31,000 others on the Champs-Élysées, or the wine-quaffing relief at the finish.

Six miles into the race, as we entered the greenery of the Bois de Vincennes, I was overtaken by a group of firefighters. They were in full uniform, helmets reflecting the sun, running in a regimented way. In their midst they carried someone sitting in a wheelchair, strapped to poles either side and raised aloft, as if carrying royalty in centuries gone by. As they ran, they sang something happy, in French, all baritones sounding like an anthem of resilience. It was captivating, melodic and entirely unexpected. I didn’t know the story of the young lady in the wheelchair, with physical disabilities that would prevent her from running in a playground, let alone 26.2 miles through Paris. I wondered what it must be like to be her, leading a life that could so easily be defined by what she couldn’t do, and where she couldn’t go, because of her condition and the inconvenience of a wheelchair. I didn’t know the story, but it resonated.

‘I realised as I looked down on the earth,’ said Chris Hadfield, commander of the International Space Station, upon returning from 6 months of orbiting the earth and reflecting on what he’d learned, ‘that there was no line between us and them. Just us.’

Is that what I witnessed in that French park? An erasing of the line between them and us, between can and cannot? Inspired by her and the firemen carrying her, I made a decision at that moment in the park. ‘One day,’ I said to myself, ‘one day you’re going to run for someone else like that.’ Just without the uniform, big boots and jovial Gaelic singing. Then the moment of clarity was gone. The singing pompiers ploughed onward through the sea of runners, like a steamship determined on its course, and I was left in its musical wake, waves of runners lapping me up. I had no way of knowing then what that thought would become, when it would germinate, or the sad context in which it would come to life.

I forgot about that brief encounter in 2010 for the next couple of years; it had been like a whiff of fine perfume in a busy street, a passing revelation amid the pain of a marathon.

Now, it is nearly dawn, a riot of birdsong tells me. In my mind I see the singing firemen again, and although their anthem has faded, the charged emotion of the memory comes to the surface. I have no chance of sleeping now. I count down the hours until I can email my uncle with a suggestion. Although it’s not a suggestion, it’s a compulsion. A necessity, not a possibility, like how my wife, Hannah, feels about Ben and Jerry’s Cookie Dough ice cream. I know how hard a marathon on two legs can be, but the seed of an idea sown on the run has penetrated my awareness in the middle of the night. I remind myself: my uncle’s running days are over, but his racing days do not have to be. Each time I go over those words, determination sinks deeper, an anchor plunging into my depths.

I don’t plan my email very well. I write it, delete it, rewrite it, the cursor dancing backwards and forwards. I am indirect and apologetic in tone. Thinking about what we’ve talked about together before, it’s always been the everyday stuff. We’ve talked about life, not the flip side, not the reality of what his illness now means. I walk around the lounge, doing tiny circuits on the rug in case there is a message hidden in the weave.

Somehow the presence of the illness has interrupted the dynamic, unsettled the rhythm of a family relationship built on running. It wouldn’t just be two runners: if he says yes, there will be a wheelchair to consider. Two’s company, three’s a crowd, but four wheels could cause mayhem.

I mention the Brighton Marathon for geographical purposes, just a 40-minute drive from his house, and there might be a chance the race organisers will allow wheelchair entrants. I also know my uncle has run the Rottingdean Off-road Marathon and the Downland Trail (30 miles), both local to Brighton. His decline in mobility coincided with the arrival of the first Brighton Marathon on the race scene in 2010, so it now hangs there, teasingly, as a major race he’s never had the chance to take part in.

I give no consideration to factors like his mobility in 10 months’ time. How about the comfort of sitting in a wheelchair for hours upon end? What about transport logistics? When is the closing date for the Brighton Marathon? (Less than a week away, as it happens.) Plus there’s the small fact I haven’t pushed an adult in a wheelchair more than 30 metres in over 30 years. Wonky shopping trolleys are my only reference point, and they didn’t have adults in them either.

But I’m a big fan of Hope. Hope isn’t dependent on what’s going on out there, determined by fluctuations in the stock market, favourable sports results or evening news headlines. Hope needs a body to live in and a mind to nurture it. Those little sparks of light in our thoughts need looking after, need sharing with others who will fan them into flame, whatever time of the night they arrive. Hope isn’t like daydreaming; it’s dangerous when you act on it, because it changes you. And when you change, everything around you changes.

How do you prepare to race with a wheelchair for 26.2 miles? What does the body go through? What does the mind contend with attempting something you’ve never done before? Where are the limits? Maybe they’re not where we think they are.

Time is not on our side. It’s been a few months since I saw my uncle last, when the clues of his illness were evident in what he said, as we stood for a family photo in a restaurant car park.

My finger hesitates over the computer mouse. I press ‘Send’, put my hands behind my head, and sigh. The chair creaks at my back. I don’t hear from him for 2 weeks.

A JOURNEY WITHOUT MAPS

One day can bend your life.

Mitch Albom

I had noticed it in the car park before I understood what it meant. Something different about my uncle’s smile. It lacked the usual symmetry, as if hiding something sad. The change in his appearance over the previous year had been perceptible. The coming change in his circumstances was not.

Andrew is my favourite uncle, I think most people have a favourite uncle or auntie, secret or declared. Uncle Andrew was mine because with him I experienced those two things every boy wants and needs from the men in his life: To feel safe and to be respected. A kind of walking-talking ‘everything’s gonna be OK’ message. Every kid wants that.

It had been a family day to celebrate my dad turning 70, but I walked away from the day with Uncle Andrew on my mind. Before leaving, we had gathered for the photo, my dad the birthday boy at the centre. Uncle Andrew stood at the edge of the group, next to me, and told me about the changes he was experiencing.

‘I was out running a while ago and stumbled for no reason. I thought I’d just tripped so, you know, I got up again. But each time I went out, I was falling over. It kept happening.’ He looked down, examining his feet, as if they were telling him something. These weren’t the words of a new runner trying to work out how to run. This man has run along Kenyan beaches, through French vineyards, around Frank Sinatra’s New York and Victor Hugo’s Paris.

Here was a man who knew his legs well. How could this be?

His wife Sandra stood nearby as we readied ourselves for the photo. I listened to my uncle’s words, but it was all the things not being said I tried to take in. He stood upright, hands in pockets, relaying his running accidents to me in a matter-of-fact way.

‘I’ve got some… what do you call them?’ he said, ‘some new-… erm, new- neuro… logical tests coming up.’ His stutter was like Morse code. A message to decipher.

A sad smile. Neurological tests. I knew something wasn’t well in the world of my favourite uncle. It was the starting line of a life-limiting illness, which would dismantle his chance of ever running again.

For a while he had suspected the decline in his running performance was due to age. He’d written to me nearly 2 years earlier, just after I’d run the Paris Marathon with my wife and sister-in-law:

The clues were there.

The week following our meal and photo, my dad emailed to explain Uncle Andrew had been diagnosed with motor neurone disease. I confess I didn’t know a single thing about it, so I began reading up about the illness, mainly on the MND Association website. I continued for 3 hours. The stories were incredible; of people facing the hurricane of an illness which steals the strength from their bodies, but who are determined to stay plugged into life.

I wanted to understand the facts, when I did they were not nice ones to know.

‘It is impossible to convey in words,’ says the MND Association, ‘the overwhelming and devastating nature of a disease which in as little as a year can turn an active, able parent, partner or employee into someone totally dependent on others for the simplest actions we take for granted.’

MND is not an illness beaten in the same way that cancer can be fought and overcome, which in itself is no mean feat. I have numerous friends who have beaten cancer and there’s plenty of celebration in their stories. Whereas cells multiply out of control with cancer, with MND they deteriorate out of control. MND is no respecter of age, ability or fame. Leeds United and England football player Don Revie, and acting legend David Niven both died of it. More recently it has affected the families of England cricketer Stuart Broad, television and radio personality Zoe Ball and climber Chris Bonington.

MND is an umbrella term for a range of ways the motor neurones in the brain stop working, as if packing up and going home early. The brain and muscles stop communicating with each other, so the muscles gradually and unpredictably stop doing what’s required of them. The net result is an illness that eventually removes a person’s ability to do the most basic things for themselves. Grip a mug of coffee. Scratch an itch. Say the names of those you love. Nip up the stairs. Tie your laces. Eat a biscuit. Swallow it. Breathe. MND takes the breath away.

There is no single test for the disease, it’s based on the opinion of a neurologist and often other conditions have to be ruled out first. This means sometimes the process of diagnosis can take months, when every week is critical because it can be a fast-acting condition. Physicist Professor Stephen Hawking, who has MND, is an incredible anomaly. He was told by doctors he had 2 years to live, in 1963. He’s just celebrated turning 73. But half of people diagnosed die within 14 months of their diagnosis.

The symptoms of the illness begin gradually and usually affect one side more than the other. Then it gets progressively worse.

‘It is like a candle: it melts your nerves and leaves your body a pile of wax,’ said Professor Morrie Schwartz, who became well known through his weekly encounters with author Mitch Albom, later encapsulated in Albom’s popular memoir Tuesdays with Morrie. For my uncle, it is the weakness in his right shoulder that means lifting his fork and gripping the stair rail are becoming increasingly difficult. A cruel tradeoff starts between exercising to strengthen the muscle but increased fatigue from doing so.

For some with MND, this disconnection between neurones and muscles predominantly affects the upper half of the body, noticeably making speech unclear (a condition known as dysarthria) and restricting hand grasp and arm lift. This is primary lateral sclerosis, which Professor Stephen Hawking has, and is the slowest form of the disease. When the neck and head are most affected, true for about a quarter of people with MND, this is progressive bulbar palsy. For others, it affects the lower half of the body far more, most noticeably the legs, known as progressive muscular atrophy.

I researched all this many times over. I memorised it. But when a friend asked me to explain it over coffee the facts had got lost in my head somewhere. I had to look it all up again. The form of MND I do know about is the one that’s invaded my family and has a name, a face, a story.

My uncle has the most common and aggressive form, affecting about two-thirds of people with MND, known as amyotrophic lateral sclerosis (ALS), where both upper and lower motor neurones are damaged. Whichever form of MND takes up residence, the process is unique but the outcome the same. Its unpredictability is the challenge, with progression differing from person to person. MND upholds individuality while removing functionality. It is a journey without maps.

My uncle wrote to me a short while after his diagnosis:

For 20 years as a long-distance runner, 3 miles has meant nothing to him. Now it’s everything.

‘Once he started running,’ his son Paul told me, ‘he was out all the time. I watched a marathon he was doing a few years ago and that’s when I thought I’d like to run a marathon one day. My biggest regret is not taking up running earlier. I’m gutted I’ve not entered a race with Dad.’ One day, father and son, running side by side. That was the hope.

‘How did you feel when you heard about your dad’s diagnosis?’ I asked him.

‘I was taken aback, to be honest. Like, I knew he’d been to the doctors, so I phoned him from work on my mobile. I remember speaking to him in a car park and not knowing what to say. The thing is, Dad was upbeat and said at least it wasn’t cancer, meaning he wouldn’t have to go through the uncertainty of whether he’d be cured or not.’

I try to imagine being on the end of that phone call. The silent gaps where thinking takes place, the spaces where words would usually be. ‘I went back to work, trying not to think about it. But of course I kept thinking about Dad, then wondering how Mum would cope, then all sorts of stuff raced through my head. I felt really angry it happened to him, you know, as he’d always been fit and healthy. I was angry his grandchildren would miss out on doing things with their grandpa. To be fair it took a while to sink in. I couldn’t believe it.’ His voice level dropped, as if all the energy to cope was squeezed into those final words.

 

Now I sit in the quiet of my lounge, the night outside breathing calmly. I get out my black notebook, remove the elastic band, and find a new page to start jotting down the facts I’ve discovered:

I pause and think.

I turn to a new page.

The science is beyond me, to be fair, but at some point in the future, in a room full of microscopes and a rail of hooks on which hang white coats, someone is going to pick the lock of MND and uncover its mayhem-creating secrets. A world free of MND is a possibility. And if we crack the code for MND, that could help with understanding other neurological conditions. Am I naive? Having been an educator in schools on HIV-AIDS for nearly two decades, I’ve seen the incredible advances in medical treatment for that illness (but not yet the removal of the stigma). The transformation in life expectancy through antiretroviral drugs has been fantastic. I’ve spoken with teenagers and young mums in Ugandan clinics living with HIV. I’ve seen the need for advances in treatment to be made global. No, I’m not naive. But maybe I’ve got a responsibility to do what I can, where I am, with what I have. It’s not what you say you believe, what you do is what you believe.

My pen tap-taps my knee, seeking a fault line through my defences. I walk to the window, and push back the curtain. I can’t see the stars; there are too many street lights.

 

I flick to the front of my black book. There’s a photo of a lady called Rosie, standing next to me, and a large yellow tent-trailer parked behind us, like an obedient guide dog. I retrieve the photo. The sharp edges of the picture curl in my hand as I remember the moment it was taken, just a few days after I’d run the Paris Marathon and seen the singing firemen.

Rosie Swale Pope ran around the entire circumference of the world. It took her 5 years, clocking up over 20,000 miles on foot, and getting through 53 pairs of trainers. She is the Imelda Marcos of the running world. Along the way she was confronted by bears, pursued by wolves, hit by a bus, struck by frostbite and chased by a man with a gun. He was naked. She also did much of it pulling a yellow trailer – her place to sleep as well as her storeroom – she affectionately called Icebird.

Running around the world was an idea that ‘took her by the scruff of the neck’ soon after Clive, her husband of 20 years, died in her arms, from prostate cancer.

‘I knew with a passionate conviction I had to do something,’ she says. So she did.

I’d spotted Icebird as I looked out my office window one day, parked casually outside a garage, looking as incongruous as an Eskimo with a spanner. I’d seen this iconic trailer in magazine articles about Rosie’s adventure. A trailer crossing Siberia and the melted plains of Iceland. A trailer with a panoramic desert or a frozen landscape stretched out behind it, as if the dramatic backdrop was somehow attached to the rear of the trailer, not a garage forecourt on the Birmingham Road.

Next thing, I was having a cup of tea with Rosie by the roadside as she changed her socks. Light rain fell. Traffic fled past on its way out of town. She was part way through her ‘27 marathons in 27 days’ challenge across England, pulling Icebird, who had just enjoyed a quick MOT. She asked me why I run. I got the impression she asked this question a lot, so I told her my reason. Then she looked up from pulling on her sock, smiled, leaned back and pulled from Icebird a black A4 notebook.

‘I like that,’ she said, ‘yes, that’s a good reason,’ and asked me to write it down. I kept flicking through until I found a blank page, noticing the handwriting of many other people, using other words, describing other reasons they kept going. Novelist Haruki Murakami once remarked that whilst he only had a few reasons to keep running he had many more reasons to give up. ‘All I can do is keep those few reasons nicely polished,’ he said. Perhaps that’s why Rosie kept a written list, to give her motivation a regular MOT. I found a fresh page, borrowed her biro, and leant the book on my knee to write the reason I run.

I’d hoped to join Rosie for the next section of her run that evening, as she still had a few miles to reach her marathon target for the day. But she needed time on her own to think. I recognised that if you’ve previously spent 5 years running around the world on your own, most of it through the vast wilderness of Siberia, you get used to your own company. She signed my copy of her book, Just a Little Run Around the World, posed for a photo in the drizzle and, like a rabbit down a hole, disappeared into her trailer. I figured she was done. But I’d caught some of her inspiration, and like a candle that shares its flame, it doesn’t become less by giving itself away. That’s when I decided to get myself a book and fill it with quotes and nuggets of inspiration. I made sure it was a black book, like Rosie’s, but mine has a red elastic band around it. Rosie taught me the value of finding out why others make the journey they do, what powers them, with or without a trailer in pursuit.

I place the photograph back in the front of the book and write one more fact:

MR HI-VIZ

Life is like riding a bicycle. In order to stay balanced, you must keep moving.

Albert Einstein

After 2 weeks of kicking myself for emailing such a ridiculous idea to my uncle, and at such a difficult time for him and his family as they absorb news of the diagnosis, he emails back.

The elation of getting his agreement is tempered by the reality that we don’t have a marathon race place. In fact, race entry is closed. And we don’t have a wheelchair. Or any experience of putting the two together. Time is running out to make it happen.

Despite official entry for the Brighton Marathon being closed by the time my uncle replied, we approach Martlets Hospice, based in the Brighton and Hove area, who secure the last wheelchair place for us. We are delighted and relieved and Martlets become a fantastic support along the way. Like many hospices, they play an essential role in helping people to live life as fully as they can, right up until the end.

With my uncle’s expectations raised, I need help learning to run with a wheelchair and to figure out some kind of training plan. I decide to hunt down somebody who can help. Our nickname for him was Mr Hi-Viz.

Occasionally I referred to him as ‘the chubby bloke in the fluorescent orange top’, when letting my kids know who I was talking about. He helps at a children’s running event each month. I didn’t mean it in an unkind way, but he stands out, wearing the top like skin. You can see him from 0.7 of a mile off.

One month, as the kids ran alongside the billowing white tape around the edge of the football pitch, our oldest son Caleb approached the finish line, leading the race. Then he tried out his new ‘signature finish’ and unleashed a double roly-poly along the grass, getting promptly overtaken to finish second. The post-race father-son conversation focused on the timing of roly-polies. Mr Hi-Viz came over to us.

‘He’s got something special, this one!’ he said. That’s when he emerged from the nickname and became Steve to me.

Steve is a car design engineer by trade (‘I get to travel all over the world: Berlin, Detroit, Scunthorpe,’ he told me) and a self-confessed latecomer to running.

‘I took it up about six years ago because I’m a stress-head. I need my run. I go out most days, always with others.’ We get talking some more at the kids’ event and it appears Steve holds some secrets for what I’m hoping to attempt with my uncle.

Steve isn’t just the proud owner of a hi-viz vest, he has a high-visibility personality to go with it. That’s one of his secrets that could help me, but there’s another more practical one.

He had been part of a team that pushed a lady in a wheelchair around the Kenilworth Half Marathon in our home county of Warwickshire. Just what I need. Somebody who knows something about this pushing-as-you-run thing. The lady had advertised for running helpers in the local paper, so he rocked up to do it. Steve and two other chaps had agreed to take on the duty and formed a wheelchair-pushing trio.

Having chatted in a muddy field at the children’s running event, we swap contact details and arrange to meet up a few weeks later to run a 5-km parkrun together, and then get a coffee afterwards.

We are the muddiest customers in the cafe, tucked away in the corner, hot mochas in hand. The manager could easily follow our two sets of dirty footprints to track us down. As Vivaldi plays on the sound system, Steve talks me through his wheelchair racing experience, with lots of expressive gestures and rocking forwards and back. An apt drama to accompany Vivaldi’s violins. I take notes in my black book, next to the facts I’ve jotted down about MND. I want to fill it with training tips and advice, but I also want to seize upon any insights into how people think when faced with difficulty.

‘The lady was something special, she really was,’ Steve tells me. ‘After her newspaper ad, I went to her house. She opened the door and was dressed head to toe in a skiing outfit. You can imagine it! “Off we go,” she says to me, and remember we’d only just turned up. On her way out she grabs a crash helmet, I mean a full-on crash helmet, and I’m thinking, “Like, how dangerous can this be?” My partner, Julie, had told me, “Whatever you do, Steve, don’t just sign up,” but she had this mesmerising presence. She puts the crash helmet on and loads herself up with dozens of energy drinks and gels. Honestly, you’ve never seen so many. But they weren’t for us runners, they were for her. She’s sitting in the wheelchair, I’m pushing her along, huffing and panting and really putting my back into it and she’s happily chomping on energy gels, sat leisurely in the chair. She was something special, Chris, honestly.’ Steve laughs and shakes his head.