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Confronting my own mortality in my 20s has forced me to make the most of life

The chemotherapy ward. Surely one of the most fearsome places imaginable, filled with the ill, the dying, the victims of that universal disease: mortality. This month will be the fourth anniversary of the first of my own, now monthly, visits to Guy’s hospital’s Cancer Centre in the shadow of the Shard in central London. Four years. Obviously most people get chemo for only a few months so this is a pretty rare experience.

While I don’t have cancer, I do have NF2: a spiteful genetic disease that’s so far given me a few dozen tumours and taken half my hearing away. Without the drug trial that has (thank every deity) worked to hold my growths in check, NF2 promises a slow-motion car crash that threatens my eyesight, speech, facial muscles, mobility and lifespan.

And, rather than being the decrepit chemo-receiver that your imagination perhaps conjures, I’m a nice young man who’s just turned 30.

But pack up your violins – garnering sympathy or pity is not my point at all.

Anyone who’s been treated in a chemo ward knows a surprising truth: it can be a wonderful place. Or, at least, nowhere near as awful as you think. The tension is all felt in the morning, while consultants um and ah over whether the treatment is working and check that your body’s dealing with the strain of it.

The chemo ward is the reward for passing those tests, your presence the hallmark of the hopes the medical profession has for your malfunctioning carcass. While I’m mostly free of side-effects, and am aware that others suffer greatly, the smiles between strangers and the peacefulness of the atmosphere point to the deep joy that being given another chance provides.

If that sounds strange to any “well” readers out there, let me explain. A big, bad diagnosis has a funny effect. God knows I’m still dealing with the after-effects of my diagnosis. Imagine having your future mangled in a matter of minutes while simultaneously being handed back every teenage insecurity you thought – aged 25 – you had just about wrestled free from. It was like that.

But you don’t keep mourning for “before”. Life’s fragility isn’t something you can unlearn and so every piece of good news is precious. And the chemo ward is “good news” incarnate. You’ve made it to level “next month”!

I’m fortunate enough, mainly by coincidence, to know or know of quite a number of people who have been bludgeoned by a chronic diagnosis, a surprise disability or disfigurement in early adulthood: old enough to know what you’ve left behind, young enough to have time stretching ahead of you.

And what’s remarkable is how proactive, energetic and enthusiastic these people are. I’m not sure any of them are any more talented than your average Joe. But as life suddenly comes to seem less certain, these people grasp every opportunity out there, while healthy peers luxuriate in the final years of their youthful invincibility complex. I know of businesses started, charitable work completed, artworks inspired and an awful lot of saying “yes” – all a direct result of these people seeing their physical selves getting walloped by the world.

Perhaps it’s just me, but being confronted with personal physical disaster – and with it the jolting and premature realisation that I am, indeed, mortal – makes that yearning to be someone, to do something, unignorable.

For my part I have taken up comedy, which, alongside journalism, allows me to release some of the emotions that inevitably build up. My latest project is What Bowie Did Next, a show about my idol, which will be at this year’s Edinburgh fringe. I sing, I dance, I’m – apparently – pretty funny: it’s basically one long cathartic “fuck you” to the limits NF2 has already put on me and those it threatens in the future. It’s me, living.

This struggle for life isn’t shared by many of my contemporaries, nor for that matter, by many of that pan-ethnic, pan-gender, pan-sexual minority: the well. For them, a sniffle means life stops and a hangover is enough of a reason to avoid a life-enriching event (“My head’s pounding, I’m gonna bail”). Anything worse – a torn tendon, an irritating skin complaint or other essentially curable ailment – is an aberration, a breakdown of what should be, and given enough medical care and attention will be again soon, a well-oiled machine.

Many more of us, I’d wager, haven’t got the luxury of a faultless body to worry over – life instead is a battle to grasp opportunities, take part as much as we can, sometimes just to carry on.

But because we all know where this journey ends, I’d rather have my eyes wide open to the necessity of living a full life every day than remain plagued by the angst of protecting a perfect body. Yes, they can do 10km pretty easily and better fit the moulds laid down by body fascists – but, for their living in ignorance of the preciousness and precariousness of this life, I really do pity the well.

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