My annus horibilis was 2010. I spent the entire year on dialysis and I found the whole thing head-wrecking. But the lowest point in the whole dialysis experience happened in October of 2010 when my brother died. Tony, who also had CF and was the youngest of the five siblings in the family, died at the age of 42. If he had lived he would be 52 today, May the 16th.
Ironically it wasn’t the CF that killed him but oesophageal cancer. I first heard he had cancer when I answered a called for him while driving around the roundabout in Carrickmines. I had known that he had undergone some tests and when I saw his number on the screen I had a bad feeling about it all. Even today, I get flashbacks to that call whenever I’m in Carrickmines.
Tony had a terrible last year and because he lived in the UK and I was on dialysis I didn’t see him throughout the period of his illness. In a way I was lucky because the manner of his death was traumatic both for my mother and my siblings. Let’s just say that he suffered a lot and some of that suffering could have been averted.
Tony was a complex character. Five years younger than me, he was an opera and classical music buff with a sharp mind, and he was always ready for a philosophical discussion that was quite likely to descend into a full-blown argument. He was one of the smartest people I’ve known.
In his early twenties, and armed with a degree in Law from UCD, he had emigrated to the UK along with his wife-to-be. After doing a number of ‘character-building’ jobs, notably in telesales (at one stage his job was to sell black plastic bags!), he eventually forged a highly successful career as a tax consultant in KPMG and settled into the madness that is the City of London, commuting daily from Wickford in Essex to Canary Wharf. It turned out that he had a special ability at coming up with tax avoidance schemes for corporations and he took great delight in being able to find loopholes in Gordon Brown’s overly-complex tax codes. Although he was in good CF health when cancer struck, he had had his ups and downs and had endured numerous spells in the Brompton Hospital in London. Unlike me, he had suffered from CF-related diabetes, a condition that on its own would present plenty of challenges to the average person. And, although he had his struggles with controlling his sugars (and once he suffered a hypo and got lost coming home from Dun Laoighaire pier) , he did eventually reach a point where he had everything under control. Then the cancer struck.
Towards the end of his life he had become a deeply religious in a very traditional Catholic sense and he even published a short philosophical/theological book which was mainly about death. To me, it was pretty depressing stuff and I only ever leafed through it. It wasn’t my kind of thing. I don’t really know if his religion represented a genuine, heartfelt set of beliefs or whether it was just his trying to rationalise the sheer unfairness of life. Who knows what’s in a person’s head?
Our relationship was complex – we were very different people even if we shared a defective gene – and in the end he still remained a bit of a mystery to me. But one thing I do know is that every time I think of him I feel desperately sad and it’s not just because he died so young and in such a painful manner. It’s something deeper than that, something I can’t quite put my finger on. All I know is he was a brave guy in every sense of the world. He had struck out and made a life for himself and he had done things that a normal, healthy person would have found challenging. Everything he achieved was due to his own determination and resilience and although this might sound a bit presumptuous, I was, and am, very proud of him.
The English don’t do death and funerals like we do in Ireland but on the day of Tony’s funeral in Sallynoggin, the day his body was buried closed to my Dad’s in Shangannagh cemetery, a large contingent of his English work colleagues were present having made the trip over from London. He had earned that most valuable of currencies: respect.