The Huffington Post, 20 March 2015 –I last wrote about the diagnosis of my two young sons with Duchenne muscular dystrophy, a fatal genetic muscle wasting disease that will likely kill them before they become men, over six months ago. I was in crisis then, reeling from the shock of the diagnosis, and what this meant for me, Klara, and most importantly, Theo and Oskar.
The prevailing emotion was fear, my mind and heart plagued by an endless carousel of worry and dread. How quickly will they decline? When will they be in wheelchairs? How will Klara cope? How will I cope? Might a significant treatment or cure come? How should we bring them up now? What should our hopes and aspirations be for them, in light of their terminal condition?
Then came the realisation that many of these questions were the unanswerable cries of a desperate parent whose children were not going to be what he had expected, indeed, what he had wished them to be. Parents have the unfortunate disposition either to mould children in their own image, or to force them to be what they are not and never will be. What did I want Theo and Oskar to be? One a great rugby player, the other a great writer?
Such wishes, however, have been rendered meaningless by their Duchenne – the single defective gene they carry, which now seeks to define their whole being. To be a great rugby player requires significant physical prowess and strength, which my sons will never possess, as they cannot produce the one protein vital for all muscles – dystrophin. Without this, muscles can do little more than waste away. And to be a great writer requires time, many decades in fact, which my sons do not have either. Duchenne is ruthless in its course, giving its sufferers little more than a glimmer of adulthood before it takes the most precious organs of all – the heart and lungs.
But then, perhaps Theo and Oskar, irrespective of their illness, will aspire to be neither rugby players nor writers. In Theo, I see a charming, imaginative, thoughtful, resilient little boy who cares little for rugby. And in Oskar, though he is still so very young, I do not see a mind which aspires for literary greatness, but rather one which is ever present and playful, both of which will preclude him from being a literary great, which requires introspection and melancholy.
Much of my suffering, and the suffering of all parents with Duchenne children, in the early years of the disease at least, is attributable to the above – the shattering of expectations. And yet they are just this, merely hopes and wishes, and as I slowly let go of them, my suffering diminishes. Why hanker after what is no longer possible, indeed, what my sons might never have wanted any way.
Theo and Oskar’s disease will shape who they are, but need it limit them, their experience of life. We live in a society dominated by insatiable aspiration and achievement, and push our children to live by these cultural standards without question. Unless they become successful lawyers, doctors, accountants or engineers, they have somehow failed, not made the most of life. But are not such aspirations, in truth, life-limiting rather than life-enhancing. Success, as our culture sees it, gives us wealth and power. But what else does it give us? Very little, in fact.
The parent of a disabled child, you are suddenly forced to look with a hard and discerning eye at the society your children live in. Will it nurture them, in spite of their condition, or will it neglect them? How will they live in a society that requires them to compete first and foremost, to be faster, stronger, wealthier, more powerful than the next man?
What drives me now, more than anything, is to nurture my sons’ spirits, to give them the strength to challenge, and perhaps even change, the culture they live in – in whatever small way. Their spirits will prove far more important than what they might earn and own, what they might do for a living.
It requires considerable strength to live another way, to live a life that your parents might not want, indeed that society might not want. Klara and I will do all we can to ensure Theo and Oskar go their own way, find their own meaning in life. We will do this for them, and for other disabled children.
If you would like to help fund the world’s best researchers and scientists find a cure, please donate to Harrison’s Fund: harrisonsfund.com
Nick Taussig is cycling The Big Bad Ride between 24-27 September 2015 for Harrison’s Fund. If you would like to make a donation, visit justgiving.com/TheBigBadRide