My health experience: Battling to adapt as a result of rare genetic disorder

This is the first time I’ve ever told anyone about my life. I’m not used to talking to people, I barely ever talk.

I remember under-10 football training, I was seven or eight, somebody gave me a shoulder and it was really painful, it wouldn’t normally hurt that much. I knew something was wrong. I was sent to Crumlin hospital for two weeks of tests and eventually I got diagnosed with Friedrich’s Ataxia – such a weird name I thought to myself.

It was a total shock to me, I’d never heard of it before. The doctor said it’s a genetic disorder I picked up when I was born, but neither of my brothers, Seán or David, got it. They said I’d be okay until I’m about 20, then the effects would become noticeable. He said I would struggle with balance and co-ordination and that I would get really nervous about lots of things and never properly relax. I would become a physically weak person but the main thing is my mental health wouldn’t be affected.

I was really, really worried when I got diagnosed. I was only going on 10 but I had to drag the worry from my mind the whole way through secondary school and it played a lot on my behaviour. I rebelled and I annoyed a lot of teachers. I used to think in the back of my mind that my career would end at 18 so I might as well enjoy myself. But I know lots of people didn’t enjoy it, I was a bit wild, especially on the pitch.

In the middle, around 15, I had to stand back and let life take its course. I started losing my speech and wasn't very mobile. I was told to stop playing sport. I hated this because sport was my escape. I played a lot of Gaelic football and hurling but all the other boys were getting bigger and stronger and I was getting weaker, so I suppose it made sense. In fifth year we went on a school tour to Paris, it was the first time I brought my wheelchair. I was so nervous about being wheeled around by people but it wasn't all that bad once I got used to it.

Depressed
I was terrified of leaving school because I knew things would be totally different. I had dreams like anyone else, a job with big money – like professional football. But I couldn't apply for any course I wanted, I had to apply to Athlone IT because it was the nearest one available. This really affected me. I felt like all my friends were doing whatever they wanted and I was left alone with my mind. I felt depressed and angry but help was never too far away.

I went to college in Athlone for two months. I studied office information, but like most things it became too difficult. The facilities in college were perfect for my wheelchair, my main problem was with the keyboard. I really wouldn’t be the fastest typist around. It was very frustrating but there was nothing I could do about it. Instead I joined a computer course in the Vocational School in Ballymahon.

The first few years after college were very tough, I felt so physically weak and didn’t want to do anything. It’s a very powerful disease. I had to adapt constantly in order to live my life and do what I liked to do. But people were always giving me ideas.

The Phoenix Disability Centre in Longford gave me the opportunity to take part in the Tall Ships in 2004 and 2006, I was much stronger then and using my manual wheelchair. The first time, we sailed from Southampton to Cork and I had to steer the ship.

It was hard to keep it steady, I was very wobbly, but I controlled it for half an hour on a windy night. I was terrified and hoping I wouldn’t make any mistakes. I felt really proud of myself afterwards and wanted to travel more.

Long flights are difficult and toilets aren't easy but I managed to get to Amsterdam, New York and Old Trafford. My social life wouldn't be the best, it's hard when you get so nervous, but it feels good to say you've been to these places.

Great support
Ataxia Ireland are a great support, they check in every week. They gave me a car for my wheelchair, I just need someone to drive me around.

I’ve always lived at home, my parents are my carers, but my condition has weakened faster than we’d hoped. In my early 20s I felt stronger and I could do a lot more on the keyboard but now there isn’t a whole lot happening physically. As time goes by I have to accept it, there’s nothing else I can do and nobody will listen to complaining. I’m very lucky that my mental health is okay.

Sport is the main thing on my mind, not my condition. If I could watch Sky Sports and Manchester United forever I'd be happy. Every week I write a sports round-up for the Longford Leader. It's mostly on football, hurling and golf. I manage it okay, I'm a bit slow but I do my best.

I've heard about a cure. Maybe in 10 years' time there will be more on it, but at the minute nobody knows, it's a very rare disease. I'm glad I wasn't told about a cure as a child. I would have stopped having fun and worried even more when they didn't find one. Now, at 30, I don't mind hearing about it. My friends have set up a music festival called Helium to raise money for Ataxia Ireland and hopefully it will help with research.

I am a bit worried about the future. I try to be positive in public, but it’s harder in my mind because I’m not building a house or playing football. All I can do is wait and see, but today is a good day and I feel mad alive.

Helium is a micro music festival organised in aid of Ataxia Ireland. The Stunning, Fight Like Apes, Mick Flannery and Kila will headline Helium 2013 in Ballymahon, Co Longford, on June 8th. For more information, check out heliumfestival.com.