EXTRACT: As a child ORLA TINSLEYwas treated as a special person and as an inspiration to others but, while she appreciated the sentiments, she now realises that it had a huge effect on her perception of herself and those around her

WHEN I WAS YOUNG, I needed to do regular sport to help combat my cystic fibrosis (CF) and I begged my parents to let me try horse-riding. It gave me a cardiovascular workout and helped move the mucus from my chest. From the cleaning to catching the horses in the field, it all made me happy. I went every Sunday between the ages of eight until 11 – apart from when I was in hospital – until one summer camp went wrong.

I had started off on Rusty, a beautiful, slim, auburn pony with a white diamond on her forehead. But when I was 11 I graduated to King, so called because he was the king of the stables. He stood at 12 hands high and wore a shiny, chestnut coat. His hair was always plaited or done up in decorative buns – he was the king after all.

That summer, King and I moved up to the highest level of fences. We had cleared the first three in the indoor arena and there was a sharp turn to the fourth. We turned too sharply and the rhythm was out. He jumped, but I wasn’t ready – and neither was he. We crashed down in the middle of the double-barrel white and yellow fences. He flung his hind legs in the air and I crashed in a heap over his right side, my left foot still in the stirrup. He started to canter, then gallop, dragging me, flopping, alongside him. My foot in the stirrup was all that was keeping me from the ground, and possibly his feet, as two instructors, Martha and Aideen, ran behind, trying stop him without frightening him further. I managed to grab his mane and pull myself in a pile on top of him, as they cooled him to a stop.

I got off. They calmed him down. “Are you hurt?” I wasn’t really, just flustered. Aideen said firmly: “You have to get back on now, or you’ll never get back on. You have to go back and jump the jump.”

I knew she was right. She gave me a leg-up and King shook his mane. I patted his neck and cantered once around to a brief applause and then headed to the fourth jump again. We cantered up softly and he stopped dead in front of it. I took him around again to shake it off, and then with his neck perfectly elongated, he launched over it and we sailed through the rest.

A week later Aideen told me that Pat wanted to see me up at the house. She was the owner of the riding school and, like the queen, she made few appearances. It was regarded as a privilege to be asked to see her. The kitchen was small, with ornaments of horses on the mantelpiece and pictures of famous racehorses adorning the walls. Pat appeared after a minute. “I didn’t know you were sick,” she told me. “I would have been more careful with you if I had known.“

“I’m okay, don’t worry about being careful with me,” I said cheerily.

“Do you like Samson?” she asked. Samson was a light chestnut pony that I had been riding since the incident with King. “I love him,” I said. “Then he’s yours,” she replied.

I stood, mouth gaping like a fish. Samson had been mistreated, she told me. They were going to send him to the meat factory because of a little problem he had when he was younger, but she had saved him. I could keep him. I hugged her.

I suppose it was kind of funny that because of CF, I was given something extraordinary that I probably wouldn’t have had otherwise. This was a familiar feeling to me, like when I was in hospital and someone dumped a load of toys on my bed. These were the times when I liked CF, when I felt like I was lucky to have been born with it. But beneath those thoughts always ran an undercurrent of guilt. I was aware of children in the hospital who had very little. I didn’t think CF meant I deserved more toys or things than others, but when I got them I felt happy, but also confused.

I loved attention, I loved performing, which made me a target for attention and special treatment. But I still didn’t get why CF was a carte blanche to adoration and free toys. I was being rewarded for just living and I think that ended up making me feel entitled to things I probably wasn’t entitled to at all.

My parents tried very hard not to over-indulge me, which was for the best. Unfortunately for them, there were so many other people all too willing to put me on a pedestal. I had everything, and yet people still treated me like I was a fragile miracle.

One day at school, I sat colouring in a Confirmation leaf. It was part of our Confirmation tree, which would bloom with leaves showing our chosen names. Behind me I heard my teacher’s voice. “Ceire-Angela?” That was the name I had picked for my Confirmation. My initials now spelled OPCAT, which I thought was pretty cool. “You can’t really have two names, Orla.” Why couldn’t I? Anne Marie had two, and just because that was a normal double-barrel name it was acceptable. What about Ceire-Angela, a hyphen makes it the exact same? She laughed and said if I could fit it all on the leaf, it would be okay.

That year I entered a “write a book” competition in school. My story was about discovering a secret world behind a boulder in a park. The winning story was by a girl who wrote about a girl from an orphanage coming to live with her and how her fictional characters’ lives changed. I couldn’t help but feel robbed because she was using her own experience, not actually anything she had thought up herself.

The winners were going to be announced at a ceremony in Dublin, presided over by the artist Don Conroy. I had met him before in hospital and frankly, his drawings of woodland creatures and multicoloured birds did little for me. At the event there was a queue of children to get his signature. All of a sudden my Irish teacher took my story out of my hands and handed it to Don, ushering me to the front. “This is a very special girl,” she said, as his grey hair bobbed to the beat of his signature. “She’s in hospital an awful lot.”

My jaw dropped to the ground. I didn’t know what to do, so I just stood there as Don Conroy drew a dolphin on the page for “an extra-special girl”. When I got back to my friends, the boys who loved drawing were really jealous, but I couldn’t bear to tell them why I got the “extra-special” dolphin. It was mortifying that my teacher would treat me like that, as if I had some sort of weakness that meant I deserved special treatment.

Looking back, I’d say my reaction was so strong because I had been meeting “celebrities” since I was small. They felt accessible to me, so they weren’t particularly overwhelming to be around. And the minute I met one who told me I was inspirational, I zoned out. None of it felt real to me, they didn’t actually care about me.

One day a girl from Ms Ryan’s class knocked on our door. She said Ms Ryan needed to speak to me. I walked out to find the teacher sitting on the kerb next to a girl in our uniform who I didn’t recognise. The teacher said she was going into hospital tomorrow. She knew I could tell her about hospital, that it was no big deal. The girl’s eyes were red, looking as lost as I was.

“Tell Orla why you’re going into hospital.” “Tonsils,” she whispered, on the verge of tears. “What hospital are you going to?” “Crumlin.” “Okay, well I’ve never actually been there . . . ” – Ms Ryan looked desperately at me – “but you get to have lots of ice cream when you get your tonsils out, it’s no big deal. I’ve seen kids get it done all the time.” The girl kept her eyes to the ground and Ms Ryan said I could go. I went back to my classroom feeling like I had failed something.

THESE STORIES show the main effects of CF in my childhood. I was treated as special, which could be good, but I also missed out on a lot of things. I was set apart from my peers as deserving special treatment, which made me feel like another species, but I was also expected to have greater maturity, greater empathy and a capacity for knowing the right thing to say, just because I had CF.

I disliked adults’ expectations and neediness and their desire to define me and use me to make themselves feel better – whether by making them feel their lives weren’t so bad after all, or by feeling they had made me smile or laugh. I knew I had a different life experience from other people and that, more often than not, this led people to call me “an inspiration”. But my dad had always been very good at dispelling this notion, so it didn’t ever become something I believed too much. He would talk philosophically about how people think and interpret things differently. That put it into perspective, but even so it sometimes really overwhelmed me.

My mom sometimes took the other approach, particularly if we were arguing. She would say, “If they only knew what you are really like.”

This was the problem. What was I really like? I didn’t know. Who knows at the age of 11 or 12? I just knew what I was supposed to be like and, thanks to a background in performing, I was able to tolerate every bad situation and compliment with a smile. Outwardly, I was every inch the brave, inspirational, strong fighter. But as I got older, the words became increasingly valueless.

Everyone saw one thing – CF – and defined me by it. But what about the rest of me? I was trying to grow beyond the parameters of my illness, but I kept getting crushed back into everyone else’s perceptions of me and it. I started learning that words are powerful. They can weigh on you until you can’t breathe. Some adults would say things like, “you make me strong” or “when I feel low, you keep me going, you give me inspiration”, so I ended up feeling trapped.

How could I deviate from this pattern and grow if I was responsible in some way, small or big, for all of these people? Of course, I was overestimating my own importance, but I didn’t know that then. This was a child’s mind trying to cope with adult concepts and emotions. I was left feeling that Spiderman thing: “With great power comes great responsibility.” Except, unlike a superhero, I felt kind of powerless, but had a feeling of great responsibility. On top of that I also felt responsible for beating CF. The idea of me was floating around, making everyone else happy, but the real me was underneath that, squashed and feeling like a phony.

One result of all this conflict was that I was kind of hard on people. I have a vivid memory of my cousin Elaine falling off her bike. She grazed her knee and began to cry. I started laughing and told her to get back up on the saddle.

I wasn’t big on compassion for people who cried. I didn’t understand why they couldn’t just man-up about these things. I now understand that my lack of compassion probably hurt people, but it was just my way of dealing with things that I couldn’t fully articulate. My mother sometimes referred to me as a “hard nut” – and she still sometimes does.

Now I’m older, I know I can’t control people’s perceptions of me and that I’m not responsible for anyone except me. I understand, too, that people can only hurt you emotionally if you give them the power to do so. We are all responsible for who we let into our hearts. When you’re a child, though, you just don’t know this stuff.

In our house, performance and creativity were valued more highly than education. That was good for me because dance, theatre and self-exploration made me more open as a person, that made me able to gel with people more quickly and, from a young age, that gave me good instincts that I could rely on. It was the difference between being extremely lonely for weeks in hospital versus having good chats and learning experiences with the other parents and children. It meant being able to speak up at age seven to authority figures, such as doctors, when they were doing something wrong. It meant being able to protect myself.

I was lucky that my parents equipped me with ways of dealing with my situation. They made it so normal for me that when I was 11 I didn’t think living a full life with CF was funny or unique, it was just me being me.

It was only when I reached my 20s that I started to realise how hard I was on people. I had lost my sense of fun, or maybe I just had a different sense of it from my friends. I loved hanging out in the theatre and goofing around with scripts and accents and being high from performing. I looked down on people who smoked and didn’t understand drinking and the hangovers that wasted entire days. I’ve grown on from that: people are who they are and it’s their business. When I was younger, I was over-involved.

Now, with hindsight, I’d say I couldn’t let others be because people didn’t really let me be. My life was full of rules and lessons and sacrificing things I enjoyed, like school and dance classes and Brownies. I felt like I was always behind, always striving to catch up and prove I was as good as or better than everybody else. I thought that, maybe, if I could be the best at what I wanted in life, then I would somehow get out of CF, that achieving my dreams would be my ticket out of illness. Even though I knew it was incurable, I think somewhere inside I thought that some time it would just disappear and leave me free.

This is an edited extract from

Salty Baby

by Orla Tinsley, published by Hachette Ireland (€13.99)