A tireless Cystic Fibrosis (CF) campaigner, Orla Tinsley started with a brief overview of the illness for the audience.
‘Cystic Fibrosis (CF) is Ireland’s most common genetically inherited illness; it affects the lungs and digestive system and results in a build up of mucus. People with CF live relatively normal lives but in my case, for instance, I had to be in hospital regularly for intravenous antibiotics. There’s no cure for it so it’s a lifelong illness.’
When asked what it was like growing up, Orla enthused, ‘my parents are amazing; I was so lucky. My dad always said you can do whatever you want to do, so I grew up believing that the power of your mind controls what you achieve.’
It was this positive attitude and the everyday routine that made Orla able to lead as normal a life as possible.
‘I hate the word normal by the way; I don’t subscribe to it. I never felt I had an illness per se; I got up, had a two-hour treatment regime, nebulisers etc and it was completely normal. I did that, then I went to school, then drama practice, then choir, then I came home and did it all again.’
But things began to change as Orla reached her teenage years. ‘I had a series of operations that meant a lot of scarring; as a young girl, I wanted to be an actress. But in a world that values physical appearance so much, I wondered how I was going to go ahead and do that.’
‘When I was 13 a boy the same age as me passed away; he had a more severe case of CF but at that age, it was a very pivotal incident. He was one of my peers, so it made me question my life. It made me think differently. I began to question whether this positive mental attitude was a foolish outlook to adopt.’
However, despite the obstacles thrown up by teenage life, the positive grounding Orla’s parents provided made her determined to live life to the full. ‘They didn’t wrap me in cotton wool and anyway, I wouldn’t have put up with it. I felt like I could do anything – in fact, I probably felt I could more. I didn’t want to feel categorised by my illness; so I participated in everything.’
But having CF meant that the importance and fragility of relationships was highlighted to Orla at a very young age.
‘It’s funny, having CF is like having two different types of cold that can’t mix; you can’t hang out with each other because you can infect the other person. That was something that could be difficult to deal with. Because we have these different bacteria, we wouldn’t hang out. In children’s hospital, you’d spy on each other across the room, full of curiosity. But there was always a commonality and camaraderie that came with that. It’s different now; with networks such as Facebook and Twitter you can communicate more easily.’
This natural curiosity led to a deep love of literature, and eventually a successful writing career. Orla explained how literature and poetry had always played an important part in her life.
‘Poetry was always incredibly important to me; I remember reading Seamus Heaney’s “Mid-Term break” and being incredibly touched by the final line. Everyone makes everything sound so complicated when you’re young but life’s actually something very simple. As a teenager you’re really curious; it’s so easy to be wrapped up in arts and poetry. When you’re connecting to it with your own emotions, with your own experience, it makes the experience so special.’
Speaking about her own writing career, Orla said; ‘I didn’t want to be a journalist at all; I thought it was really boring but I was wrong. Journalism can be really creative. Being in hospital a lot of the time when I was younger was really exciting; you got to hear about lots of different lives, meet different characters, hear new perspectives. My dad always wanted me to be a journalist. I wanted to be a novelist locked in a shed somewhere, writing.’
But due to her illness, journalism was part of a natural progression. ‘When I first moved to the adult hospital, I saw first hand how bad the services were for people with CF. It was damaging lives and life expectancy for people with CF was lower in Ireland than elsewhere in the world. Something hit me. I didn’t want this to happen to me. I was in an orthopaedic ward in a bed next to the mother of Roisin Ingle of the Irish Times – they had a teenage section and invited me to write something and they turned it into a column. That’s how I started; I just kept writing about it.’
And the activism?
‘I never thought about the word activist. I thought at the age of 18 that someone would do something about the conditions as soon as it was spoken about, but that didn’t happen. I ended up sick in Italy with my youth group, couldn’t speak Italian but they were great health-care wise. I phoned the Irish Times and asked if I could write about it. In 1997, public support suddenly exploded and people realised; this is serious… people are dying much younger than they should have to. Young people with CF just want to get on with normal lives – finish school, go to college, etc – but they’re being stopped by lack of facilities.’
But the shouldering of such responsibility – and at such a young age – also had its drawbacks.
‘It used to make me really angry, but I’d deal with that by writing another piece or another column. I didn’t realise at the time that was how I was dealing with it. I felt like I was shouting in the dark on my own for a while, until 2008, when Joe Duffy show picked up a piece I’d wrote. The criticism was of the media coverage at the time, and there was then an incredible outpouring of support by people affected by CF, they came on the radio and talked about it. It changed things. It ran for 11 days straight on a national Radio and gave a power to a movement that hadn’t been there before. The idea of a community effort to change something; that’s what did it. You can do an awful lot on your own if you keep pushing – but having that level of support is where the strength lies.’
But despite the success of her campaigning, Orla remains humble, acknowledging that there’s a long way to go – and she says it can’t be done without more support.
‘It’s incredible when you get a result but you always, always take it with a pinch of salt. There have been so many disappointments. The CF unit is built – it’s actually physically built. That’s the difference now. I won lots of awards while I was campaigning but I was thinking; we’re not there yet! And why give awards to me? It’s all the community too that’s behind it. The raising of awareness; that’s what helped us.’
In between campaigning, Orla managed to realise her dream and write a book. But how did she go about it; what obstacles did she have to deal with?
‘From the start, I knew I wanted to be honest. I had to pick out key moments – and that’s weird when you’re just 21! Most of the events were around school and hospital. I was very aware that your perception changes as you get older, your memory changes. I wondered whether I’d still think it the same when I read it later. It was hard to figure it out.’
‘I was worried about my parents’ reaction the most but they read manuscript before it came out. I didn’t want to write something that was sanitised. It’s not a true representation to say you’re always happy etc. The book has parts that are depressing, it deals with sadness and illness and losing friends at a young age. It’s intense in your teenage years; everything shifts quickly and if you’re away for a few weeks, it can be really difficult. I wanted to focus on that as well because I spoke to lots of teenage girls with CF who found that really difficult. I wanted the book to be a true representation of what it can be like to be sick with CF.’
Orla also addressed her sexual preferences in her book; something which received a lot of questioning, with many people wondering why she didn’t stick with just the campaigning side of things.
“Of course I addressed my sexual preferences; I’m just 25 and still figuring everything out. People wanted to know why I needed to address it but why not? It’s about my life and it’s part of my life. It’s in the book and it’s in the public domain so people will ask about it – but it drove me mad that everyone wanted to question whether it was necessary, why I didn’t just stick with the campaigning.’
So, going forward, what’s Orla’s plan?
‘I don’t have a plan; I don’t want to plan. Plans are a bad idea. I have an illness that knocks you down randomly so I try not to plan. I kind of wish lots – I wish this or that and hope it happens. Right now, I’d like to write more. We’ll just see.’