Scariff man, Ray McNamara died just a short few days after his 30th birthday in 2004. After his passing, the people of East Clare raised more than €10,000 to the cause of people with cystic fibrosis in Ray’s memory.
“He was my older brother by two years. I suppose it is better to say he is my older brother. He had cystic fibrosis. Ray wasn’t diagnosed until he was 12 years old.
Back in the ’80s, it was, at best, poor standards. Maybe I am being unfair, maybe I am not the best or most objective person to ask but I can picture my mum carrying my brother as a small child from doctor to doctor and all the while being told she was daft, that her child was ok but she knew something was wrong,” PJ said.
The life of a CF carrier born in the ’70s wasn’t great in outlook and according to PJ, in the 1980s life expectancy of people with cystic fibrosis was less than 14 years.
“In Northern Ireland, the average age of a person with CF was a lot longer than south of the border, some say up to 10 years. In the UK, USA, and Canada, life expectancy was higher again. So in our little country, whose citizens have more CF than any other per head of population, our standards were the lowest. I have often thought about it, it baffles me completely. I often say when people talk of their experiences with our health service, ‘It’s a great little country but don’t get sick’. I am not talking about most of the people on the ground; most of the foot soldiers of our health system are some of the finest you will meet. But somewhere along the way, the organisation and management of it all has been misguided,” he said.
However, he admits things change and people with CF have a much, much, brighter outlook in many regards at present, especially in light of the associations TLC4CF have formed.
“They are doing things that in some instances our Governments just can’t do but it must be noted that TLC4CF are doing things that our governments have failed to do. It must be frustrating trying to get better standards for people with CF but I suppose it is better to get up and do something about it, like TLC4CF are doing. I wonder will I struggle to smile,” PJ added.
Ray held a doctorate in University of Limerick in mathematics and statistics and was pursuing post-doctoral research into mathematically mapping and predicting ocean currents.
“At least that’s what I think he was doing. He never mentioned it to me and he rarely mentioned it to his friends or family.
“The first I really knew of it is when the priest read out the title of his thesis at his funeral, “Numerical solutions of the planetary geostrophic equations with applications to ocean modeling”, there was a silence of bewilderment in the crowd.
“Then the priest said ‘I can’t understand the title let alone read the text’. It was an ice-breaker on a day stricken with indescribable sadness. When Ray was pressed on what he was doing, I mean really pressurized into talking about his job, he would say he is studying ‘hard sums’. Ray was an avid sports fan; he had a passion for the Clare hurling team.
“How lucky he was to be alive in the golden period of Clare hurling. He was fanatical about Everton Football Club and travelled to a few games. Ray was also a big fan of the Irish soccer team; if he were alive today he would be heading to Poland this summer without question. He loved music, especially indie, and he travelled to a lot of concerts.”
When PJ mentioned to friends of Ray that he was writing something about him, he said they talked about how dignified he was, sitting with his oxygen mask on in his final year, awaiting a lung transplant.
“The highs of getting two call-ups to Newcastle Hospital, because transplantable lungs had become available, the highs of two stand-by situations as well.
“The lows of returning home empty handed twice because it transpired the lungs were unsuitable. Within six months of all that he was dead. I just spoke to a friend of Ray, who said ‘It never occurred to us that the transplant wasn’t going to happen, that he wouldn’t be called up again, and again if necessary’ but it must have occurred to Ray,” PJ concluded.