Aaron O Brien interview
copyright Victoria Mary Clarke 2004

Aaron O'Brien is a very lucky young man. He loves his job and not many people can say that. Aaron is twenty eight and he's a sales advisor with 'Top Man' at the Liffey Valley Shopping Centre. By next Spring, he'll be a top level sales person and then it will be on to management. I didn't take his word for this, I sent a spy in to the shop. My spy and her son were delighted to encounter a sales person who wasn't too busy chatting or texting friends to serve them and who seemed genuinely interested in helping them find what they wanted.

Originally, Aaron dreamed of being cabin crew on an airline. He loves to travel, he loves to fly and he loves people. He also collects airline safety information cards, (he has six hundred of them). But he didn't meet the height requirements for cabin crew, -he is, he admits, a little on the short side.

'That's the only time I have been stopped from doing something that I really wanted to do,' he tells me, when we meet. 'But I have no regrets. Life is good.'

Like most of us, I am often given to moaning. I look around me at what other people have, -at their jobs, their houses, cars, whatever- and I wonder why I haven't got what other people have got. Meeting Aaron stopped me in my tracks. Because even though he doesn't complain, Aaron has had to put up with more than most of us to get to where he is in his life and career. Aaron was born with a condition called Neurofibromatosis, which means that he has a severe scoliosis of the spine, which is why he is unusually short. He also has fibromas or tumours in various parts of his body and many more of them could appear at any moment. On top of all of this, his condition gave him learning difficulties to cope with, presenting challenges with reading and writing. So it's been a difficult journey.

We meet in Dublin's Clarence hotel, where he has agreed to tell me his story in an effort to raise awareness of the condition, which affects one in every three thousand people in this country. He himself was diagnosed when he was three.
'I saw a programme on the Discovery Channel last night, about a little girl who was having the exact same spinal fusion operation as I had,' he tells me, as we sit down. 'This month it will be twenty years since I had the operation. It's amazing how much I was affected by the programme, it brought everything back. I was in tears, I don't know why.'

Aaron's first memory is of being in traction, which was done in an attempt to straighten his spine. He hated it, he says, and it didn't work.

'Then I went into a brace which I had to wear all the time, from the time I was three until the age of eight.'

The curve in his spine, which he shows me, is pretty severe.

'As I was getting older, the curve was getting worse. What they were saying was that the spine was bending to such an extent that it was putting pressure on my spinal cord. I could have ended up in a wheelchair.'

An operation took place, to fuse the vertebrae so that the spine couldn't bend any more.

'Generally speaking, I have a very positive outlook on life,' he says. ' Because I consider myself lucky not to have ended up in a wheelchair. And I survived the operation. At the time there was only a fifty fifty chance. It was a very tough decision for my parents to make.'

Not having been born healthy, he says, meant that he didn't know what he was missing, when other boys were able to play football and he wasn't able to join in.
'So when people say there's a football match on, I'm like whatever!'
Me too, I say.

'I would love to go bungee jumping, but I wouldn't risk it.'
It was a restricted childhood, he says.

'But I was a very happy, contented child, didn't really complain much. And my family have been fantastic.'

School, however, was a different matter.

'Primary school was a nightmare. And more from an academic point of view than because of being slagged off. I have something similar to dyslexia, which is part of the condition. And after the spinal fusion, I was off school for a while which made it worse. Homework that should have taken twenty minutes took two hours of blood sweat and a lot of tears!'

Luckily, he was offered a place at the Catherine MacAuley School, in Baggot Street, where he learned to read and write almost as well as other children of his age.
'It will always have a special place in my heart, because I wouldn't be where I am today without them,' he says.

He pauses, and tears come to his eyes.

'God, I'm getting emotional now! My reading age, before I went there was four or five years behind the normal. Afterwards, I never looked back!"

Finding a job wasn't easy, either. Even though discrimination is illegal, he says, he was not offered jobs that he would have been perfectly capable of doing. Several times, he was turned down for work but he kept on trying until someone he knew gave him a job at his local Centra. He stayed there for three years, after which he moved to Debenhams. Clothes are a passion, and he has since found the perfect job, at 'Top Man.'

Aaron is generally happy with his lot, but he does find it difficult to meet a partner.
'It's an image thing, yes. We probably do all have an obsession with image and we are probably all thinking that we are not good enough, but I am a bit on the short side! I am not being neurotic, I do see people staring and commenting. As a kid, it did bother me, I was a bit self conscious and even as an adult, I could be walking down the street and I would see people laughing or sniggering. One night I was out with friends and these guys said something like 'Hi shorty!' and I was really pissed off, I told them where to get off. But most of the time it doesn't bother me.'

He has had few partners.

'I haven't had many, but I have had a few. I still haven't found the right person, but I am sure they are out there somewhere!'

If Aaron had children, there would be a fifty fifty chance of them inheriting NF.
'And that's a huge thing, when it's someone else's life that you are dealing with. And my kids could be affected worse than I am. They can do a test, during pregnancy, to find out if they are affected, but that would bring up ethical considerations, too.'

Despite all of the challenges, he remains positive.

'You have two choices, in life. You can be a victim, or you can be a fighter. Every day that you are alive and healthy is a gift and I do believe that there is a plan for everyone and that everything that happens to you happens for a reason. But even though everything happens for a reason and the reason is good, you mightn't necessarily know it at the time!'

www.nfaireland.ie or call Paddy Griffin on 01 872 6338 for info