ORLA TINSLEY HAS been a campaigner for the rights of those with cystic fibrosis for almost a decade and is working as a journalist. Her memoir, My Story, has just been published in paperback.

This extract is published with kind permission of Hachette Books Ireland.

WHEN I WAS twelve, The Bog of Allen meant little more to me than a place where people dumped unwanted furniture, which is why I was suspicious this particular day when my mother suggested we go for a walk there.

It was 4.30pm – why wasn’t I being forced to do my homework first? To be honest, I’d rather have been doing it because I hated walking. We were halfway down the bog when my mother said, “Do you know Gerard Cronin?” Her voice was high, like a bird singing. She was nervous.

“I know his brother,” I said. I didn’t really know Gerard because I wasn’t allowed to, but it would have been hard not to have bumped into the boys – Gerard and his brother, Matthew – in Temple Street. It was a small hospital and Gerard was in a lot. We had different bugs growing in our lungs, so we couldn’t be in a room together. I knew him only from shimmying past each other in corridors, Mission Impossible-style, avoiding all contact. Sometimes we would wave or salute one another as I went in one door of the playroom and he went out the door at the far end.

“We can’t mix because of cross-infection, so I just see him when he’s going in one door and me out the other. That’s how I know Gerard,” I said to my mother.

“He was very sick,” she replied. ‘” she was struggling to say it, it inflamed something in me, and the way she said it. Bloody angels. He’s gone up to Heaven.

“He’s dead, you mean?” I said coldly.

Mom started to sob and tried to hug me. So I ran. I ran as fast as I could away from the dry, desiccated bog that was about as exciting as staring at your own piss. I ran in the back door and slammed through the kitchen door, bumping into Dad. ‘Where are you going?’ But my face was burning and he let me go to my room.

It’s because Gerard died and Mom took me for a walk in the bog that I got that perfect A in English. I imagined I was at the funeral, watching from afar. I wrote, “Here we are at the door to change, the hardest place for anyone to be.” My teacher placed the essay on my desk and leaned in as she pointed at the mark. “It’s as if I was there,” she said. And then I was embarrassed.

For me, English wasn’t just a subject in school like it was for the other girls – it was a lifeline. I read poetry obsessively, thought about poets’ lives, read their words with a hunger I couldn’t fully explain and invested 99% of my energy in reading and writing. It helped me to comprehend some of the things I had to deal with at that young age, like death. But I never really felt ‘at a young age’, so when adults were uncomfortable and unsure of how to talk to me about death, I turned to the words of poets to find the clarity that I needed. When I was twelve I discovered Seamus Heaney and was deeply touched by the words of his poem ‘Mid-term Break’.

I read this poem again after meeting Seamus Heaney at a poetry reading in 2008, when I was twenty-one. I told him I had first read his poetry when I was twelve and I wanted to describe to him what a profound effect it had on me as a child, but I wasn’t really sure how to explain it. When I was twelve, I recognised the innocence of the snowdrops and the cot and the purity that goes with the angelic image of ‘a poppy bruise and no gaudy scars’. I recognised the fear of the aged shaking the hands of the now responsible youth, watching his father’s tears and his mother’s inconsolable grief.

At twelve, the main line that resonated with me was the final one: ‘A four foot box, a foot for every year.’ I didn’t really understand what I was hearing when I was told ‘they’re no longer with us’ or ‘she passed away’ or ‘he’s gone to the angels’. I hated the ‘gone to the angels’ line in particular. It sounded like complete baloney. People lived and died and I knew that much, but the way it was spoken of made dying seem like a romantic notion, a fuzzy thing with endless possibilities.

Heaney’s poem told me the honest truth in a way I could relate to and understand. ‘A four foot box, a foot for every year.’ That told me what I wanted to know. It was the fragility projected in those nine words that resonated with me and made me think of the eight years I had on this kid and how the older I got, the more difficult it would be to get a coffin to fit me.

I thought about the power of those words and what they said about life, that it is fragile and short, but it can be calculated and powerful. That one sentence spoke volumes. I didn’t believe in Heaven or the subscribed notion of God, and I still don’t. As far as I was concerned, when I died, I wasn’t going to a paradise in the sky presided over by a man with a white beard. But I wasn’t a realist either. I was drawn to non-Catholic notions of afterlife, like reincarnation and the living force of energy. I believed in magic, in energy and power in the universe, in the ability of those who have died being able to help the living in some way. I believed in witches and goblins and magic dust that Tinkerbell might flit around your garden.

I believed that magic was within me too, that I had something special to offer. I just didn’t know how to tap into it. From as early as I could remember, I had always felt I had a purpose in life. My parents had imbued me with the sense that I was special, that I had been put on the Earth for a reason and that I had the strength and the power to fulfil that reason, whatever it was. I had a special path to follow. I just had to keep looking until I found it.

My Story by Orla Tinsley is published by Hachette Books Ireland and is available now.