Making the most of life’s journey
Manulla’s Trevor O’Sullivan speaks to The Mayo News about his incredible story
“The world ain’t all sunshine and rainbows. It’s a very mean and nasty place and I don’t care how tough you are it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain’t about how hard ya hit. It’s about how hard you can get hit and keep moving forward. How much you can take and keep moving forward. That’s how winning is done!”
Rocky Balboa in Rocky Balboa VI
Trevor O’Sullivan last played Gaelic football as a 12-year-old in 1986. It would be the last time his life could be considered ‘normal’. He was a promising player, on the same Balla team as future Mayo stars Maurice Sheridan and Ronan Golding. But while Sheridan and Golding would go off and take to the field for their county, their teammate would have to fight an altogether different battle in life.
It’s a battle he continues to fight but he knows the clock is ticking. Instead of letting that get to him, Trevor O’Sullivan is making the most of life and, despite all his difficulties, says he wouldn’t change a thing. His experiences have made him and defined him. He’s infused with a determination to make the most of his life.
The problems began the night of his mother’s family’s reunion in Manulla one weekend in 1986. He asked to go home because he was feeling sick. What happened when he went to the bathroom at home remains vivid in his memory.
“I vomited pure blood, lots of it. My dad brought me in the car straight to A&E. I remember the journey and I was crying ‘I’m dying, I’m dying’,” he recalls, 26 years on in the family home in Lakeland, Manulla.
In Mayo General they thought it was merely a bleeding ulcer but when Trevor started vomiting blood again, he knew by the terrified look on the face of his attendant nurse that it was much more serious. He was rushed up to Our Lady’s Hospital in Crumlin the next day and spent eight weeks there with countless different tests being done.
He was diagnosed with cirrhosis of the liver, a problem more usually associated with someone with severe alcohol problems, but the cause could not be established. It was put down as idiopathic cirrhosis, basically ‘cause unknown’.
Amazingly, though, the doctors at Our Lady’s had missed the underlying cause, which was that Trevor O’Sullivan was born with Cystic Fibrosis. It would be another 24 years and countless health problems before he would be diagnosed with CF at the age of 36, one of the oldest diagnoses ever in Ireland. Ironically it would be back at Our Lady’s Hospital in Crumlin where the root cause was finally confirmed in October, 2010.
By that stage Trevor had enough trips to death’s door that would make you wonder how he kept coming back but, like the above quote from one of his heroes, Rocky, Trevor has kept trying to move forward after every hard hit.
Right now he’s not sure how much time he has left. The average lifespan for someone with Cystic Fibrosis in the world is 37. In Ireland it’s much lower due to the lack of suitable facilities in certain parts of the country, including Mayo. Trevor O’Sullivan was diagnosed only at 36 meaning he wasn’t receiving anything near the appropriate type of care for someone with CF. That he has made it this far is incredible.
His story is a fascinating, powerful, sometimes sad but, primarily, an inspirational one.
THAT episode in 1986 was pretty much the end of his football playing days. He did attempt a comeback aged fifteen but when running out from the dressing rooms at Balla, he tripped and broke his arm. Maybe someone was telling him something.
But from when he left Crumlin until before his Inter Cert three years later, life was generally normal. That is, normal relative to how the next few years would turn out as Trevor took blow after blow.
He had a very bad chest infection which nearly forced him to cancel the Inter Cert exams but he got through them with a strong codeine-based prescription. However, once the exams were over, his health started to decline rapidly.
“My liver was a ticking time bomb. It was irreversibly damaged and was progressively getting worse. I was lucky I didn’t die the first time in 1986,” he admits. “I was getting sicker and sicker. I see pictures now of myself from that time and I’m beside my friends and I look like death warmed up basically.
“I was told then to go up for tests in Dublin. I wasn’t told by my parents what I was going up for because I was such a worrier but I was going up to be assessed for a liver transplant.”
By that stage he had sat and repeated his Leaving Cert., doing his level best to lead a normal life but he admits he was ‘striving for the impossible’. From when he repeated in 1992 to his first transplant in May, 1995, the symptoms got worse and worse. Blood would be streaming down his legs - a symptom of liver failure; he was coughing up blood - a big sign of CF; and he recalls having no quality of life, a frightening experience for a young adult.
Unfortunately the benefits from the first transplant didn’t last long. Essentially blood supply to his new liver was almost non-existent and he was hours from death when he was called for the second transplant that October. It was far from a smooth procedure then either. He was seventeen hours in surgery and before he woke up, he had to be brought back twice more with massive bleeding and was critical.
In all he would have four operations in as many weeks after the transplant to stop massive internal bleeding.
“Doctors are not ones for believing in divine intervention but one of them said to Mam that ‘this guy must have some purpose in life because he really shouldn’t be here now,’” said Trevor.
WITH his second transplant complete, Trevor O’Sullivan looked forward to fulfilling some long held dreams. A huge Elvis fan, one of his first trips was to Graceland and then he was interviewed for a mature student’s place on the Journalism degree course in Dublin City University.
He got a first in his thesis, a first in his News Journalism module and qualified with a 2.1 overall in 2003.
After some freelance work in Ireland, Trevor moved to London where he worked for two years, mainly with The Irish Post.
“They were two of the best years of my life,” he admits. “But in the last six months I was rapidly going downhill with my health. It was getting more and more exhausting. I still tried but it got the better of me. I had to return home and all of a sudden I started getting really bad chest infections. I was brought up to Mayo General. This was around 2008. I was in and out every six weeks,” he recalls.
“Eventually they sent me up to the head of the Cystic Fibrosis unit in Dublin and he met me and said they were very worried. They did the required tests and they confirmed I had Cystic Fibrosis, that was October 2010.” He may also have to undergo a third liver transplant this year.
Most frighteningly of all Trevor recalls how, just as he was about to go under the knife for his first liver transplant in 1995, he was told he might have CF. Leaving aside the awful timing of that announcement, it remained the only time it was mentioned until 2010, fifteen years later. But Trevor O’Sullivan retains a largely positive outlook, despite all the knocks and hits.
“You can’t blame all the hospitals. It was meant to be. I don’t look back with any bitterness now. If I was to do that you’d get nowhere in life. A question a lot of people ask me is if I could go back to the age of 12 and live a normal life, would I. I wouldn’t change a thing. It has made me who I am and it has happened for a reason. I appreciate life more and I appreciate how important little things are,” he reflects.
He admits there are only so many times he can keep beating the odds. He considers ‘every minute I get is a bonus’ and that ‘there’s a clock ticking above me’. But he’s not laced with self-pity, instead he is trying to make the most of his life. He has a ‘bucket list’, a term originating from the film of that name starring Jack Nicholson and Morgan Freeman where two terminally ill patients embark on a wish list before they die. The three main features of Trevor’s list are in the piece opposite.
“I’ve been to Graceland, I have done my degree, I’ve done what I can to raise awareness about organ donation. My mother is from Mayo but my father is from Kerry so seeing Kerry winning the All-Ireland in 1997 was a big one, I know that won’t be popular with Mayo readers,” he laughs.
“To be alive for Liverpool to win the Champions League Final in Istanbul in 2005, that was special. I’ve done a bit of writing so if I died tomorrow I’d be happy with the bit of writing I’ve done in the past few months with www.journal.ie and what I’ve done with The Irish Post while I’d love to write a book with all proceeds going to CF and organ donation,” he added.
He wrote a stirring piece on The Journal over the Christmas about his bucket list and the response he got was, he admits, overwhelming. A woman in Philadelphia offered to put him up if he goes over to run the Rocky steps while two people have offered to pay for the flights. His story is one that has moved people. Trevor himself is unsure if he wants to take them up on the offers as he would be more comfortable doing it off his own bat but he retains an inspiring determination to pack as much as he can into whatever time he has left.
Making every second count.
Trevor’s Bucket List
To climb the ‘Rocky Steps’ in Philadelphia
“I’d love to run the Rocky steps, it is a rite of passage for a lot of people. It resonates with me, fighting the good fight, never giving up and battling against insurmountable odds. Keep going, to try to achieve as much as you can in the time you have. If someone said to me you can have ten years where you wouldn’t do much or two years where you do a lot of productive stuff, I’d take the two years.
“The Rocky message - he loses in the first film, he loses in the second film. It is all about going the distance. You don’t necessarily have to win, I’m not going to win this battle in the end but I’ll have fought the good fight and fought for as long as I could against it.”
To find a partner
“Being single at the moment isn’t easy because you see everyone else getting married, buying houses and mortgages and families and that’s tough. I haven’t had many relationships because number one I’m very shy anyway. As well there is the thought of how do you break that kind of news about my health to someone?
“There are Cystic Fibrosis people who are going out with people, it does work, but it is a part of my life that is a regret, a big regret. That would be a bucket list, to have some sort of relationship but it is a hard one to admit. If any woman from Mayo is reading this and they want a blind date, they’re more than welcome to meet me!”
To meet Kenny Dalglish
“I started supporting Liverpool in 1981 and Kenny Dalglish became my favourite player. In those years Liverpool were winning everything and it was great but, God, I’d appreciate it so much more now. Kenny Dalglish returned as manager and I really can’t believe it, seeing him on the touchline, it is like Liverpool have been reborn. I have to pinch myself that I am alive now to see it. He was my idol all along. He did so much work after Hillsborough. He’s a great man. I know he comes across as dour and all of that to the media but behind the scenes he’s meant to be a really nice guy. He was great to the families at Hillsborough. I’d love to go and meet someone like him.”
CF West are selling a charity calendar which can be bought on their website to help for a dedicated unit for CF in Mayo General.
“The problem with CF and the reason Ireland has such a low life expectancy for CF is that people have been going into six bedded wards, picking up infections and we’re very vulnerable to infections. You need to be isolated,” explains Trevor.
He also made an appeal for people to consider becoming an organ donor, after receiving two liver transplants himself.
“If people thought they were at death’s door and could be saved if they were given an organ, they would accept it. If they can accept it, maybe you should consider being a donor then because it does save lives. People do get the transplant and do appreciate life,” he said.
To receive an organ donor card, freetext ‘Donor’ to 50050.