“Writing was a means of escaping the pain of my condition by imagining and creating other realities. It was also a method of explaining my illness to myself, by documenting experiences, thoughts and emotions, and trying to build something meaningful from them.”
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The Chinese writer Lin Yutang once wrote that if you can spend an afternoon in a perfectly useless manner, you have learned how to live. When I was 16, I paid a rather useless trip to Powerscourt Waterfall in Co Wicklow. At the time, I was in the middle of a bone marrow transplant. Admitted to hospital in late June, I’d quickly become incredibly ill, in violent pain and too weak to lift myself out of bed. It was now early August, and I was allowed out of the isolation ward for day trips. Even so, I clung to the idea of hospital, and the routine I had there. I was worried about infections and daunted by all the pills I had to take. Hospital was the only place I felt safe.
It’s nice to get away from it all. Last March, my dad announced that he was slipping off to Killarney for three days to the annual Chartered Accountants in Practice conference. Thinking my cries would be in vain, I pleaded with him to take me too, so I could get a break from my satisfying-yet-tedious year-out home-bound book-writing.
And this is why Snape is the most remarkable hero in the Harry Potter novels. Dumbledore once told Harry that it is our choices, far more than our abilities, that define us. Though his love was also the greatest pain of his life, Snape chose to honour it, and saves everybody.
Perhaps that is the finest achievement of director Bryan Singer’s 2006 movie Superman Returns – showing us Superman’s pain. How do you find problems for a guy who can stop bullets? Superman’s greatest challenge isn’t kryptonite, it’s being Superman – bearing that responsibility.
I look over at the door opposite me – a symbol of free air beyond; unlike the trapped, sterilised place where I write. Danny, a massive blob of nine-year-old Kerryness in the bed beside me, asks if I like school. Normally I’d say no; right now, I’m thinking yes. I go for the compromise, ‘Ah, it’s not too bad.’ Any place is better. The medical straps from three machines attached to me are like chains in a prison. The physical pain from the needle in my arm is like a metaphor for a deeper tear in my emotions. Meanwhile, Tracy Chapman whispers in my ear that I can die now, my true love won’t come for me.
There are few things more soul-cleansing than a night walk around Kilmacanogue. The sky’s brightened by a magical blue-hue, though stars still glow. At one point, you can observe all of Bray lit up like a sea of candles, and the black outline of Bray Head, silhouetted like a sleeping giant against the horizon. Lights from nearby houses guide you…Walk briskly and you’ll never be cold. Not many cars go past; you rarely meet people. There’s a peaceful solitude in everything. You can contemplate your existence, its possibilities and its failings, in the serenity darkness lends.
It’s funny, but one of the great teachers in life is serious illness. For seven years now I have lived with a life-threatening genetic disease called Fanconi anaemia, the incidence of which is two in one million. The disease was in the news a few weeks ago. Controversy was caused when the parents of Molly Nash, a US girl with FA, had their embryos genetically screened, to determine which one would be the best match for a stem cell transplant for Molly.
In my darkest hour, I lay in hospital, in great pain on so many levels. I was bitterly lonely, in need of love and something to love. I did not need God to get me through. I was loved by my friends and family; and I had my love for life. A short while ago, I was privileged to get a look at photographer David Stephenson’s Hunger. This collection features photos of those who went to find comfort at the Relics of Saint Therese, which recently travelled around the country. Looking at Hunger, I thought, who am I to judge such devotion? But equally, why should I be condemned for having life as my religion, living it as my practise, and my friends, my family, my emotions and my thinking as my spiritual leaders?
How can expressing something do justice to what is beyond expression? How can words explain what language cannot comprehend? Yet words are all we’ve got. Or at least, all I’ve got, while I remain alone.