Non-Fiction – Nick Taussig

What the fuck are you doing, Rishi?

It is as if I, and a few others, inhabit an alternate universe, when the Prime Minister of the United Kingdom, despite being in possession of the most recent reports from the IPCC and United Nations, both of which point to a devastating future should we not immediately curb and cease fossil fuel usage, proclaims he will grant thousands of new oil and gas licenses.

There is something both tragic and pathetic in his proclamation, as he tries to sell it to the British people. For here’s a man motivated by self-interest – he holds a vain hope of re-election, if he can deliver economic growth – beholden to the increasingly hollow demands of global capitalism, ‘hollow’ because economic growth has shown itself, in late stage capitalism, to be an illusion, a false dawn, unable to even deliver its chief promise of individual happiness.

Beneath Rishi’s poorly delivered sales patter, can be heard the slight existentialist dread of a man who knows, like many other current leaders also lacking the political will and courage to confront the climate crisis, that he’s leading us to oblivion. And yet like his many contemporaries, he is driven by short-term interest, and beyond this, wilful blindness.

It is simply not in Rishi’s interests to do what he, and others, know we must do, which is to radically change the economic system that governs us. And so, he chooses to deny the truth: he is willfully blind. Let us be in no doubt about this. For you can no longer reasonably claim that you have another opinion on the matter, that the climate crisis is, in your view, not as bad as they say, when large parts of the world are either on fire or under water. The evidence is now incontrovertible.

Does he, on occasion, like awake at night, unable to sleep, as he ponders the fate of his young daughters in thirty years’ time, if we continue as we are? He surely must, in spite of his likely inherent capacity to compartmentalise. For there are certain truths that none of us can run from.

Perhaps we must give Rishi some further cause for insomnia, and follow the lead of young Austrians, and others, who are now suing their leaders and governments for climate inaction? This must be the next step for young Britons. To hold him to account for his current actions.

I’m now fully behind the actions of Just Stop Oil, a small group of people with the courage to confront the truth, and do something about it. They deserve all our support.

https://juststopoil.org/

David Attenborough: A Life on Our Planet

The most effective and moving film on climate change to date, from someone who has witnessed it firsthand over the past ninety-three years.

We are in the midst of the sixth mass extinction, the anthropocene extinction, which we, human beings, are responsible for. Things are dire. I am terrified for future generations.

If we carry on as we are, the next century will indeed be the “century of hell” — the scale of human suffering will be immeasurable, like never seen before — and the majority of human life will cease. In the space of three hundred years, we will have made ourselves extinct.

But there is still hope, in David Attenborough’s final testimony, as long as we confront reality, show the necessary collective will, and act accordingly.

We are fucked, but only if we choose to be. In spite of the pull of our selfish gene, which drives us to seek personal gain and satisfaction above all else, whatever the cost — the current White House incumbent the living embodiment of this human failing — we are able to rise above it, to act for future generations, for humanity, for the continuation of our species … if we choose to. And we must, and will.

Enough of Brexit, Trump and other current preoccupations, which in the context of the mass extinction we are living through and will live through, are mere sideshows, spectacles, irrelevances. They mean nothing. They do not matter.

Let us try, try, try, to focus on what matters, and see where this collective will and focus can take us. Might we save future generations? We must, for them. For what else is there… really. There is nothing.

https://www.netflix.com/watch/80216393

Good News Network – The Extraordinary Alchemy of Positive Action

A seemingly magical thing happened in late 2016. I received a phone call, out of the blue, from a dear old friend, Sara Caplan, who said, quite simply, “Nick, I think I can help.”

Over two years earlier, in June 2014, my young sons Theo and Oskar had been diagnosed with Duchenne muscular dystrophy, a progressive and fatal muscle wasting disease, which often kills boys before they become men. I’d responded by fundraising, doing all I could for a Duchenne dedicated medical research charity, Harrison’s Fund, in order to help expedite a significant treatment and/or cure.

Alongside this, my wife Klara and I had realised we’d have to move, our tall thin home in Epsom, the end wing of a Victorian mansion, unsuitable for two boys soon-to-be non-ambulant and in wheelchairs. We needed a bungalow on a flat plot of land, preferably somewhere beautiful, which would nurture the boys’ hearts and souls in spite of their life-limiting condition.

And so it was we found a wonderful place in Box Hill, Surrey, albeit a rather ramshackle two-bedroom bungalow in a state of profound disrepair. We’d need to do substantial work to get the place right, to ensure it met Theo and Oskar’s increasing needs, but crucially it sat on a big half-acre plot with a magical garden, surrounded by trees and woodland, right by Headley Heath – an oasis of open heathland, woodland and chalk downland.

It soon became clear, however, once we’d bought the place, that the extent of work required – to make this a home, which would fully enable Theo and Oskar, and increase their quality of life – demanded more than my salary as an independent film producer could provide. And so it was that positive action, and the hope of a magical outcome, became our modus operandi.

We began with an international architects’ competition run by Colander Associates and supported by Sir John McAslan, to design a light, spacious barrier-free home. Tigg+Coll, a young and exciting practice in London, won, beating twenty-eight submissions from emerging architects in the UK, America and the Netherlands.

And we ended with the slightly mad endeavour that I run twenty half marathons in twenty days from five o’clock to seven o’clock every morning before work. It was this, which led Sara to call me and say, “Nick, short of giving yourself a heart attack, let me see if my current employer, the property developer Ballymore, can help.”

Peter McCall, Ballymore’s Construction Director, and Sara, a senior sales negotiator there, took the special project to the Chairman and board, and said, “Let’s help this family.” Meanwhile, I completed the multi-marathon challenge, running two hours every morning in the black of winter through December, resembling a set of traffic lights – for I was keen not to get run over – and in spite of my physique, which is far better suited to the shot put than long-distance running.

Ballymore offered up its project management and procurement team, which then set about taking Tigg+Coll’s final design and constructing it. And like any charitable and altruistic endeavour, it has been hard fought and challenging every step of the way, with Barry Martin, Dorota Krasnodebska and Vasile Mititiuc – the Ballymore construction and design team – forced to work wonders.

To witness the house coming together has been both life-changing and life-affirming in the truest sense. For this new home, designed and built for Theo and Oskar, will make a deep and lasting impact on the quality of their lives. It will enable them, not disable them further. And all this – so much work and sacrifice, so much goodwill, so many contractors, so much machinery, so many materials – in order to help a family with two disabled children. For me and Klara, Theo and Oskar’s parents, it has been profoundly humbling to be helped in this way and to this extent, as there are so many other families in need also, so many others who deserve such help and support. Our gratitude is boundless, and we shall never forget this great gift.

Thank you… Sara, Peter, Barry, Dorota, Vasile… and so many more, too many to thank in fact, who have done so much and given their all to make Theo and Oskar’s house the very best it can be. We intend for it to be a place where other Duchenne families can visit and stay, so they can also benefit from this great, extraordinary gift … the gift of a new home for Theo and Oskar, which has been purpose built for those living with Duchenne.

The Huffington Post – Love Really Can Conquer All

It was World Duchenne Day on 7 September. Much happens in the community, as parents around the world continue to strive for a significant treatment or cure for their sons: there is nothing quite like the motivation of a parent watching their child grow weaker by the day. We will do anything for our children, die for them if we must.

Announcements of scientific breakthroughs are made, strong results in laboratories are lauded, positive trial data is circulated. In turn, more money flows into numerous Duchenne-focused bioscience companies, charities and hospitals invest in clinical trial capacity, yet still, things do not progress fast enough. Hopes are built, money raised, science advanced, but then… nothing. Another year passes with no significant treatment or cure, and our sons continue to face the inevitable prospect of a slow, painful and premature death.

Duchenne, in this respect, is a ruthless judge and executioner. Progress means nothing to it, and it teases from our sons’ wasting muscles, murmuring like a deathly ghost casting its fatal spell, “Not good enough. You’re failing them. They continue to die without exception.”

My first Duchenne conference in 2014, and a parent with a teenage son sitting by his side fresh from a tracheotomy, a newly converted responaut, confronted a panel of scientists with the words, “You said the same thing ten years ago, five years ago, and now. But there’s nothing, but for another press release amounting to little. How much money do I need to raise, what do I need to do, for you to finally get there? What do all of us in this room with dying sons need to fucking do!?”

I did not understand his rage then. I do now, as does my wife Klara. This is the spectre that haunts every Duchenne parent, which leaves them so often angry and restless. Can I do more? Can we do more? Can they do more?

The carousel of thoughts and worries always follows a similar course. Theo could not get up off the floor today. It took him twice as long as even just three months ago. He cannot get up that hill anymore. No more walking to school, unless I can park in the school car park, as I can no longer carry them both. What about when Oskar grows weaker too? How on earth do I push two wheelchairs? When will Theo require an electric chair? When will he become wholly dependent on a ventilator to breathe? And on, and on. Worry is repetitive, achieves little, but still, I must engage in it, this purposeless ritual.

And there am I assuming that everything should have a reason or purpose. What is the reason for Duchenne? How can there be one, for a fatal genetic disease that forces boys off their feet and to an early grave.

C.S. Lewis would have me believe, in the infinite wisdom of his Christian evangelism, that my children’s suffering, and the suffering of others with Duchenne, is God’s metaphor to rouse a deaf world. But surely such a god is cruel. Other world religions offer similarly unconvincing rationale, and only Buddhism comes close to offering a credible one, in its idea of deathlessness and perpetual rebirth – the inevitable cycle of life.

Is not Duchenne, in truth, like other fatal illnesses, simply a by-product of evolution, whose imperative demands that only the fittest survive, the species forever regulating its numbers in a multitude of ways in order to continue to exist and thrive. This explanation might seem brutal and fatalistic, but it is nevertheless the truth, in spite of the post-truth world we might live in.

But then, if the laws and logic of our existence are such, this unforgiving and unreasonable, should not our response to Duchenne – to curing our sons of this fatal disease once and for all – be not the same. We must never give up, we must fight to the very end.

Such a response might defy reality – the truth of our existence – but it is driven by love, and in this world of ours, of infinite paradox and ceaseless complexity, little else matters. For love doesn’t require a rationale. And it can conquer all.

The Huffington Post – How Duchenne Has Changed Me

I am not as I was. I am a changed man. Life has changed me. Duchenne has changed me. I, we, will beat the fucker, that is the fatal disease, Duchenne muscular dystrophy, which Theo, Oskar and thousands of other boys worldwide have, and which will kill them.

The diagnosis gives us parents, of Duchenne boys, a frightening clarity and purpose. Our sons grow weaker by the day, will suffer and die young, and so we will do whatever it takes, to keep them alive for as long as possible. What meaning this suddenly gives our lives, what purpose?! We will do anything for them, fight to the very end, even give our lives for them, such is the pull of this new raison d’etre, such is the power of our love. But this purpose and love can also twist us, unsettle us, destroy us.

A friend, a very dear and candid one, made me face this paradox head on. “You will do whatever it takes for Theo and Oskar, but at what cost, what expense, to others?” It is a question which every one of us, who is doing all we can for our fatally ill children, must ask ourselves. Does our determined and single-minded pursuit, to make their short and difficult lives as fulfilling as possible while simultaneously seeking a significant treatment and/or cure for their condition, risk leaving little room for anything, or anyone, else? The answer is, of course, yes.

Klara watches me, embarking on this challenge then that one, knowing this is my way of confronting the deadly disease, and supports me on each occasion, though like my dear and candid friend, does not let me forget that I walk a tightrope, giving so much time and energy to the fight that there is then, paradoxically, not enough of me for those I fight and strive for. How she loves Theo and Oskar, an ever-present and devoted mother, with her boys every step of the way, till the vey end. Is not this the greatest challenge of all – greater than running 400km over twenty days, or cycling 600km over three?

What to do? How to find the balance? How should we, parents of sick children, respond to their condition? What lengths should we go to? I had not imagined that these were the big questions I would be asking myself at 43.

I had read Viktor Frankl’s Holocaust account as a young man and disputed his search for meaning. According to Frankl, “Freedom is only part of the story and half of the truth. Freedom is but the negative aspect of the whole phenomenon whose positive aspect is responsibleness. In fact, freedom is in danger of degenerating into mere arbitrariness unless it is lived in terms of responsibleness.”

I saw this as life-inhibiting, not life-affirming, as I firmly ascribed to the idea that what really mattered was what we expected from life. I was the self-centred, individualistic libertarian, committed to Nietzsche’s narrative of the force and power of the individual’s will, sure that the meaning of life lay in a commitment to personal liberty, personal enhancement, above all else. I was as naive, outspoken and sure of myself, as the likes of Milo Yiannopoulos.

But it is easy to be a cultural libertarian and free speech fundamentalist when one has led a privileged life and not been challenged by it. It takes little courage and strength to be outrageous and outspoken. Vanity is the principal requirement, which the likes of Milo and Trump possess in abundance.

Frankl, when faced with the horror of Auschwitz, realised that “what was really needed was a fundamental change in our attitude toward life. We had to learn ourselves and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead think of ourselves as those who were being questioned by life—daily and hourly. Our question must consist, not in talk and meditation, but in right action and in right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual.”

And so now, as a middle-aged man, with two fatally ill sons, I find myself agreeing with Frankl’s assessment, not least because I’ve had enough of talk, the mindless and petty chatter of modern life that Milo, Trump, Boris, Farrage, the Daily Mail and others epitomise, all these narcissistic fools, albeit one an inanimate one, who busy themselves with their own incessant self-aggrandisement and petty preoccupations, who revel in power and notoriety, at the expense of others. I wish they would expend their energy trying to find the right answers to life’s problems, which are far greater than the ones they’re concerned with.

What if Farrage, instead of pursuing his misguided and adolescent obsession with independence from Europe, had spent the last decade fighting, and finding the cure for, a fatal disease that is killing hundreds of thousands? What if Boris, rather than doing anything to become PM, even if this meant lying to himself and others, had committed himself to tireless environmental campaigning in the face of the dire forecast that the majority of the southern hemisphere could well be uninhabitable in twenty years? What if Milo suddenly gave up on his shtick for wealth and infamy, his narcissistic and frankly tedious “Dangerous Faggot Tour”, and instead dedicated himself to taking on the countless governments worldwide who are marginalising, criminalising and in some cases killing their homosexual citizens? What if Trump, rather than seeking the highest office in the world, instead committed himself solely to philanthropic work, doing as Bill Gates does and giving away his fortune.

How I wish all these power-hungry, influential fools would redirect their efforts towards what matters, this not the advice of a bleeding heart liberal, but of someone who sees clearly that there are far greater problems facing us that require our right action and right conduct. It takes far greater courage to be truly responsible, for ourselves and others. How I’d love to help these men redirect their efforts. What good they could do, what responsibleness they’d show, this the greatest human quality of all.

Let’s fight for what’s truly right and important in 2017, and see what we might achieve.

The Huffington Post – I Cannot Walk, Daddy!

I did not think it would be this soon, just after his fifth birthday, that his legs would finally fail him.

Bocketts Farm in Fetcham, Surrey, Saturday morning, and Theo stumbles over to me from the softplay on his toes, legs quivering below the knees. “I cannot walk, daddy! My legs hurt.” With these words, he wraps his arms around my waist and holds on tight, through fear of collapsing in a sprawled heap on the floor.

I bend forward over his body, and reach for his calves, both of which feel more like small boulders than failing leg muscles. He relies on these like no other – as every Duchenne boy does – while he can still walk to keep him upright and moving forward. He’s having contractures, his calve muscles shortening and cramping. I squeeze one of them, and feel him flinch with pain.

‘I cannot bear this’ is my immediate response as I lean back until I’m upright again, then look at him, my son, my dear son. “Daddy, I need to sit down,” he says with extraordinary composure and pragmatism. I look around and cannot see a free chair anywhere. Now Oskar, his little brother, is here too, clinging to my leg and wants carrying as well. He might have Duchenne also, but unlike his older brother, he’s definitely able to walk, simply doesn’t want to.

Shit, what do I do? “I need a wee, daddy,” Theo then utters. I carry them both, in either arm, to the toilet. Unable to stand, I hold Theo over the urinal while Oskar, out of my arms now, runs around inspecting every other vacant urinal.

“A chair, daddy, a chair,” Theo declares, as I carry him out of the toilet and sit him down on the nearest one, then hurry back to get Oskar, who by this point has turned on every tap he can reach and is spraying and splashing water everywhere.

Back to Theo, with Oskar screaming under my arm – he did not appreciate his water show being interrupted – and Theo says, “A wheelchair, daddy, so we can look around,” as if stating the obvious.

I burst into tears at this point, as a number of parents look on, unclear as to why this man before them with two adorable little boys is quite so upset. Oskar no longer cries, and Theo looks at me a little perplexed.

“Yes, a wheelchair,” I mumble to myself, as I realise I’ve left Theo’s at home and don’t have a buggy either. Reception, yes, they might have one, I think, and hurry over to ask them. Bingo, they do, and Theo is suddenly delighted as daddy returns with a big red-framed one.

He’s adamant that we look at the miniature farm exhibit, each window displaying a different season, then go and feed the animals: the goats, lamas, sheep and cows. Theo is smitten by an exceptionally greedy Billy goat, who proceeds to eat not only all the feed but the brown paper bag containing it, while Oskar is transfixed by a small Jersey cow, whose enormous wet tongue slathers his hands and arms until they are thick with saliva.

“Wash hands, boys,” I insist, “then to the swimming pool”. Will he be able to swim? I wonder. “Daddy, yes, swimming will help my legs,” Theo says, as if possessing an innate understanding of his condition. “Yes, let’s help those poorly muscles of yours,” I reply, and he smiles warmly at me, excited to see Jo, his swimming instructor.

In the car and off we go, and before long we’re there, at the pool, and Jo is waiting. She gets him moving in the water in no time, and soon he is walking again, the water seeming to seep into his legs and give them life once more.

I sit with my wife Klara, who consoles me, both of us watching Theo and Oskar through the glass, as I recount the events of the morning. And when I’ve finished, Klara, urging me to look at Theo laughing and smiling with Jo and his little brother in the water, whispers in my ear, “It is what it is, Nick, he is good within himself, and that is all that matters.”

Klara is right, this is really all that matters, and yet I must still do what I can for him, I think, keep him on his feet for as long as possible before the disease takes its deadly grip.

Next week is The Big Bad Ride. Riding out with me are Nick Rucker, Dave Morrison, Joe Quigley, Chin Nicholson and Rob Dembrey, all the way from Land’s End to London, just under 600km in four days. Thank you, gentlemen, for doing this.

The Huffington Post – We Will Never Forget, Brexiteers!

The majority of parents with children suffering from rare fatal genetic diseases looked on aghast at last week’s political events, as a bunch of nasty, and frankly pathetic, politicians sought little more than power and personal advancement.

Though some, zealots such as Gove, Farrage and Duncan Smith, actually believe in their infantile vision of an independent Britain outside of Europe running its own affairs like never before, others, like Johnson, do not. He saw the zealots for what they are – little men, ignorant of history, clinging to a fantastical view of what Great Britain might be – yet hoped they would nevertheless provide him with a path to power and glory. He, Boris, would take the throne, reign in the fanatics who got him there, then give the people a more palatable Brexit light.

I am angry, very angry, and write this after listening to a Roald Dahl interview on BBC Radio Four, the writer insisting that sometimes we must cry out, speak the truth and confront the bullshit we are spun. In the spirit of Roald Dahl, a heavyweight boxing champion before he became a writer, I would love to get Gove, Farrage, Johnson and Duncan Smith in the ring, and systematically beat the lies they spun throughout the campaign out of them.

I’m unclear whom I’m more angry with: Gove for his Machiavellian cunning, Farrage for his populist idiocy, Johnson for his rampant blonde but dumb ambition, or Duncan Smith for his bare-faced cheek, claiming to care for the vulnerable while simultaneously subjecting them to abject penury for six years.

But what I’m most angry about is the consequences of their actions, which will never lead to something more important than saving the lives of sick children. In one foul swoop, the Brexiteers have jeopardised the future of rare disease medical research – reducing its funding, destroying the spirit of collaboration between many European countries, and delaying vital work that will save young lives. Instead they have consigned a nation’s energy, for decades to come, to “being in charge of its own affairs again”, whatever the hell this means, as if it were not before. Brussels never ruled us, you bloody fools, it enabled us.

Murdoch and Dacre, and many of their fanatical and small-minded columnists, bang the drum for an independent Britain because it plays to their ill-informed readers, helping them sell more newspapers and feeding them the lie of a perfect Britain, a great utopia that will somehow manifest in our separation from Europe. Grow up, wise up. We must make our own happiness, which can never be found in constructs such as nationhood, the promise of every totalitarian regime. We would do far better to spend our time on things that matter: friends, family, people. Human beings make the world great, not nations.

Gove, Farage, Johnson, Duncan Smith, Murdoch, Dacre and other Brexiteers… I will not forget the consequences of your actions, my sons will not forget, other sick children will not forget, and their parents will not forget. I hope you realise in time what you have done.

The Huffington Post – Blue Hair Day

This Sunday 26th June is Blue Hair Day, a brilliant annual flagship campaign run by Harrison’s Fund cooked up by a bunch of big-hearted mums to raise awareness and funds for Duchenne muscular dystrophy.

The idea to go blue for the day, sport a silly wig and get involved in the Duchenne cause first came from a group of mums at my eldest Theo’s school, who, when he and his brother Oskar were first diagnosed, wanted to do something to help. These mums saw very clearly that something had to be done to stop another generation of boys dying from this fatal genetic disease. And so they came together and did something about it.

I find myself often sounding like a broken record, and worrying that those close will simply tire of me when I say over and over that if we do not do what we can as soon as possible then another generation will die. This is not a politician’s mantra about whether we remain in or leave Europe, a slogan about open or closed borders, a catchphrase about whether the United Kingdom should devolve or stay together. It is far more important than all of these: it is about doing all we can to stop another generation of boys from dying, because if we do not, their lives will be very difficult, this is certain, and they will die.

Theo turns five in just over a month and his wheelchair is on the way. The disease takes its grip already, distorting his body and unsettling his mind: the brain also needs dystrophin, the vital muscle protein he cannot produce. Over the next few years he will become more reliant on his chair, and by adolescence will need an electric one. His body will then fail him further, his spine curving, and his heart and lungs growing steadily weaker. By his late teens he could well be locked in, able to speak and operate his chair, but unable to breathe without a ventilator and do anything without a carer, even scratch his nose. What life is this? Need his life be this?

Theo and other Duchenne boys possess an innate and intimate understanding of their condition. They know they are different, that they grow weaker not stronger, that their futures hold something very different. But they carry on, rising to the great challenge of their disease, not wilting in the face of it, and finding another way to be and to experience life, which is as rich, complex and meaningful as any other life. But how I, and many other Duchenne parents, want our sons to be able to live another life, if they so choose. Their incurable disease robs them of this choice.

There is nothing more important for Duchenne sufferers and parents than to have others beside them, acknowledging their pain and predicament, and working with them, alongside them, hand-in-hand, to change their fates. My wife Klara wept the other day because she felt no one really heard her cries, and the cries of other Duchenne mothers. We all need to know we matter; we all need to know others care. Though science moves ahead, with great promise being shown in a wide range of treatment approaches, there is still much to do, and unless we are together, another generation of boys will die: I say it again, this mantra, but only because it is the truth… and must be said again and again until it is heard by all and a significant treatment or cure is finally found and made available to all.

There might be more happening than ever before in the Duchenne world, and yet unless we are together, supported by as many people and organisations as possible, we will not beat this cruel disease. Blue Hair Day asks all of us to come together for the day as one and show a collective will, humour, spirit and courage to finally beat this big bad disease, which is robbing thousands of boys of a future. Let us face it, let us beat it, let us all get involved: https://harrisonsfund.com/blue-hair-day.php

The Huffington Post – Friends Like These

I write this post over a week after we completed The Big Bad Ride, a 460-mile endurance cycle from Edinburgh to London in aid of Harrison’s Fund, a small charity working hard to find a cure for Duchenne muscular dystrophy, a fatal disease which affects my two young sons, Theo and Oskar.

I am indebted to my fellow riders: Nick Rucker, Mike Barnard, Dan Croft, Luke Bordewich, Dave Morrison and Chin Nicholson. All of them kept me going in very different ways, from Nick’s infectious energy and wonderful madcap silliness, to Mike’s quiet strength and resilience, to Dan’s steadfast determination and humour, to Luke’s willingness to lead the charge from the front, to Dave’s infinite wisdom and experience in all matters cycling, to Chin’s ever-present and indispensable care and support.

Old friends and new, they trucked along with me as we followed the A1 all the way down: getting lost, windswept and drenched in Northumberland; battling delirium and unimaginable fatigue as we climbed yet another bloody Pennine; racing across the flat lands of Lincolnshire, high on Haribos and energy gels, sure that we were finally pro-cyclists; and pushing through, on the last day, from Cambridge to London, our final destination Dulwich College, where half of us had gone to school. It was there where we ultimately collapsed, after we had crossed the line, in one giant saddle-sore heap.

Beyond the training we’d all done, what really kept us going, however, was the love and affection we have for one another, and our shared purpose, which at times I could see etched very clearly on my friends’ pained faces: Nick determined to keep on going in spite of his failing knees, Mike in spite of his sciatica, Dan in spite of the growing number of pustules accumulating on his arse, Dave in spite of his exhaustion after riding the first two days in one, Luke in spite of the demands of his new job and the fact that he has done one-too-many long charity rides already, and Chin in spite of not knowing any of us before this whole insane endeavour began. All of them did it in spite of the pain and discomfort they had to endure along the way, because of Theo and Oskar, and other boys with Duchenne, this cruel disease.

Humour, more than anything else, sustained us, and there was plenty of it, which Mike captured so well in a post-ride email. Moments of understatement included me announcing on the first day in Edinburgh, five minutes into the ride, “Don’t worry, the Garmin (a favoured GPS navigation device for cyclists) will show us the way!” It transpired that I couldn’t actually work the thing, this becoming all too clear when, just ten minutes later, we found ourselves on the motorway, definitely not on the designated route, dodging high speed juggernauts. Moments of genius included Chin making each of us a perfect espresso in Consett, from the support car, to accompany our Lidl lunch.

Lowlights included cyclocross care of Google Maps in Bishop Auckland, where we ended up on a road not even fit for livestock let alone MAMILs in lycra with their precious bikes petrified of getting punctures. Highlights included Nick’s guide to the different dialects of Scotland and Northern England, normally at high volume and in local company to test authenticity of accent.

Moments of stupidity, as Mike rightly observed, included preparation for a long day’s cycling with curry tapas and four pints of Kingfisher each the night before. It’s no wonder Dan ended up standing in a public park in Holbeach with his hands down his shorts smothering Sudocrem all over his arse while two young girls looked on, considering whether or not to inform the nearest policeman and have him arrested.

As the days went on, Nick and I, the two Nicks, regressed, remembering every single slightly mad gesture, sound and phrase we’d cooked up at school, with the rest of the team forced to endure this dual insanity, which expressed itself even when we were halfway up a hill, and in considerable pain. It’s lucky that the sanity of the majority prevailed, this spirit of reason captured best by Chin – in every respect a dead ringer for the wonderful Jim Broadbent but for the fact that he’s a redhead and at least a quarter of a century younger.

We received a special welcome at the finish line, our loved ones there to greet us along with supporters from the College including the Master Joe Spence, and when I knelt down to hug Theo, while Klara and Oskar looked on, I could sense his gratitude and appreciation, as he looked at all of us exhausted and started to piece together quite why we’d done what we just did, cycle the length of the land, to help his “weak muscles”, in Theo’s words.

We got there, we made it – God knows how – and I am indebted to all of you: Nick, Mike, Dan, Luke, Dave and Chin. Thank you, Gentlemen. You are good men. And perhaps, we shall do it again next year.

The Huffington Post – The Big Bad Ride

This week I embark on a bloody long cycle from Edinburgh to London with a number of old school friends. Why we lost touch I do not not know, but that we are in touch again, and will be together as we make our long way down, fills me with joy and wonder.

Tragedy has the curious habit of bringing those we’ve lost contact with back into our lives. When I found out last year about my sons’ fatal diagnosis, I was reeling, my mind frantically trying to make sense of what had happened, why such a fate had befallen me, my wife, my sons.

I scoured my past, recalling as much as I could, some memories imbued with great significance, others, with little; some interpretations with hope, others, despair. The narrative in my mind was like a broken record, repetitive and tuneless, consumed by a false logic. Yes, this has happened because of this. It must have done. There is no other explanation. And on, and on.

I had learned long ago, though, not to place too much stake in past reflection, particularly during times of crisis. The mind is its own worst enemy and does not offer meaning and solace, but nihilism and chaos. Three years of psychoanalysis had taught me this, the unquiet mind possessing a striking propensity for melodrama and catastrophe. Was it not inevitable that it would lead to this, that I must face what I do now?!

Such fateful thinking is unhelpful, not least because it’s clear that, if we try hard enough, we can explain anything to ourselves. I would not find an answer in my past for why my two sons’ muscles are wasting. No, rather, they were simply born this way, without proper functioning dystrophin genes. That’s it. No more than this. And why? Because nature’s like this, all of us different, none of us perfect, some of us with overt weakness, such as Duchenne, and others with a more subtle form, barely visible but still present.

The word ‘disability’ has infinite meaning, something we become acutely aware of when we are the parents of disabled children. We realise that disability is manifest not only in the body but also the heart. Someone might be tall, strong and handsome, a seemingly perfect able-bodied specimen, but they are emotionally disabled i.e. an arsehole.

Amidst the disorder and heartache of those first few months of diagnosis, trying to come to terms with my son’s deteriorating bodies, there were moments of striking clarity, my mind drawn to those that matter, in particular to lost friends, my dreams full of school days.

There was Nick Rucker, whom I’d been so close to. We spent most of our teens striving to be as madcap as possible, spurred on by the likes of Monthy Python, inventing an infinite number of silly voices and even sillier, and frankly absurd, faces. When we were not fooling around, we prided ourselves on being great artists one day, and sportsmen the next, though we were neither. It was Nick who suggested we do something for Theo and Oskar, and preferably something as foolish as trying to ride the length of Britain, or close to it. Neither of us even owned a bloody bike.

Before I knew it, Nick had also pulled in others to join us, old school friends such as Dan Croft, whose mischievous sense of humour, inventiveness and goodwill I remember so well. Dan had the wonderful capacity to disrupt anything. And Mike Barnard, a rarity in a head boy, sharp-witted and fiercely intelligent but also profoundly decent and humble, a combination that invariably won us over.

As ill-qualified as the two Nicks to undertake such a long ride – neither Dan nor Mike owned bikes either – the perfect team was, therefore, assembling. And Nick Lawson, the year above us, would be joining too, possessing a great empathy and fierce determination to help the vulnerable and marginalised, born out of the tragedy of losing his own son when he was very young.

Two experienced riders accompany us, thankfully, Luke Bordewich and Dave Morrison, both of whom we novices would be lost without. And then there’s Chin Nicholson providing team support, and Mark Dressel, who’s worked hard to get me ready the last few months with intensive watt bike training. “I will help you to understand your engine,” he explained to me during the first session, as I looked at him rather confused, unaware I even had such a thing.

Old friends and new have come together for The Big Bad Ride, and I realise how fortunate and privileged I am to have friends like these, who, in spite of the demands of their own work and families, quite simply, want to help, and more than this, are willing to suffer along the way. Riding 460 miles or 740km is not easy. It hurts. But they want to do this, will put their bodies and minds through this.

It was Nick who said to me not long ago, “Hey, there’s not enough love in the world.” This statement captures well what is, in truth, most important, the capacity to actively love, to have a big heart, to not be an arsehole. If I were to find any great wisdom or truth in my past, it would be this, that real love is not something which comes easy to us but rather something we must dedicate ourselves to, work at, persist in, fight for.

Before I learned that my sons might not reach adulthood, I loved them, but differently from how I do now. My love was, in many respects, a passive one. The love I have for them now, though, is more conscious, determined, deliberate. I want them to be happy, to possess a real joy and love of life, and to this end will stop at nothing to ensure neither is excluded in spite of their illness, that they can have all the things that their contemporaries have, in particular good friends.

Theo, just four years old, already cherishes Max, Ben and Lewis. He missed them terribly during the summer holidays and longed to be with them again. On his birthday, finally reunited with them, he was unable to contain his joy and excitement, wrapping his arms around each of them and holding on for dear life through fear that they might leave him once more.

Now at school, these friends become evermore important as his body starts to fail him, and I hope, for his sake, they will love him as actively as my school friends love me, doing what they can for me and my sons.