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.