- This piece is dedicated to Jamarae Young
SINCE THE AGE of 12 I have been raging against the dying of the light. My lifetime of illness started with a traumatic event that is as vivid now as it was 26 years ago. I vomited a tremendous amount of blood on two separate occasions. It was the first manifestation of cirrhosis of the liver.
The first liver transplant surgeon Thomas Starzl described this symptom in his autobiography by saying “there is no more terrifying sight in medicine than an ashen and panic-stricken patient, bleeding internally into the oesophagus and stomach and then vomiting his life’s blood onto the floor before anything can be done to help. Many patients do not survive the first such incident”.
My teenage years were ravaged by liver disease and lung problems and in 1994 at the age of 20 I was assessed for a liver transplant. In May 1995 I became the 42nd person to undergo the operation in Ireland. It failed within months and I had a second transplant when I was mere hours from death. It took 17 hours and 5 operations to stem internal bleeding.
During those desolate moments I began to tick off things I wanted to achieve. It’s now universally known as a ‘bucket list’ but back then all I knew it as was a series of life goals. These were the three primary goals back then:
- Renew my love affair with writing – my English teacher always believed I had the talent to succeed
- Visit Graceland as the music of Elvis always illuminated the often insurmountable odds I faced
- Make people aware of the importance of organ donation
I started a journalism degree in DCU in 1997 the day after another of life’s ambitions was ticked off (seeing Kerry win the Sam Maguire after an 11-year gap). Studying journalism was all about self-fulfilment. It was unleashing the creativity that had been stifled by years of ill health. When I should possibly have been taking life easy I was pushing myself to the max to achieve the highest marks possible.
During the first summer break of my journalism I achieved another lifetime goal of visiting Graceland. People often ask me what it means for an Elvis fan. I simply say that to those who understand an explanation is not needed and to those who don’t understand an explanation is not possible.
However the four-year degree took six years to complete because even then my quality of life was not what it should be from a new liver. Graduating from DCU was and will always remain one of the highlights of my life. I also utilised the internet to help every possible patient pre and post-transplant I could. I had no qualms about telling everyone I met I had been the recipient of the gift of life and urged everyone to carry an organ donor card.
After my degree I worked for INN, Newstalk and freelanced for different papers including The Irish Times and Sunday Business Post and then spent two years in London working for The Irish Post. But an insidious series of health problems were plaguing me incessantly. Still I kept ticking off more of life’s goals I had set myself. I managed to queue for hours to see Sylvester Stallone on the red carpet at the premiere of the final Rocky film. It was always more than a movie series to me and a story that resonated deeply. The story of an underdog who kept fighting the good fight and always battled back against overwhelming obstacles has touched many people’s lives. But to me Rocky is probably my biggest source of inspiration. The speech in the last film written by Stallone in a film he also directed is my life’s philosophy summed up in 47 seconds (from 1:07):
(via donovantan2006/Youtube.com)
After returning to Ireland from London my health took a catastrophic turn for the worse. Incessant lung problems meant I was in and out of hospital for two years with life threatening pneumonia and MRSA septicaemia until I received the damning news at the age of 37 that the source of all my health problems was cystic fibrosis.
It was an incredibly late age to be diagnosed. A few months ago I discovered the sickening blow of being told I had 66 per cent permanent hearing loss in my right ear. Rather than throw in the towel I have tried to fight on. The latest blow left me with the ‘eye of the tiger’ – to make the best of my rapidly dwindling time on this earth. With failing lungs, liver and kidneys the prognosis is not good. With all the hammering my body has took there is no guarantee I would pass the assessment for a transplant. So I am left with a clock ticking rapidly and a last list of things I have yet to achieve. So this is the ‘bucket list’ now:
- Currently my quality of life is abysmal for the simple fact that I am unable to write. Almost every avenue has been shut down by illness. I know that lack of work is the case for many writers but at least they have time on their side. I don’t. The only thing that really makes me feel alive is writing on anything. So in a climate where freelance work is difficult to obtain I am offering to work for free, with the possibility that some contribution can be made to cystic fibrosis and organ donation.
- My ultimate ambition is to tell my story in a book. But I probably don’t have time to send proposal after proposal only for it to be turned down. I wouldn’t want to pocket from a book, I would want all proceeds to go to organ donation and cystic fibrosis research and support services. If you search the health section of any good health shop there is very little book detailing organ transplantation and there is a multitude of aspects to my story all I would hope would be useful and positive to readers.
- And last but not least, I had planned to finally run those Rocky steps in Philadelphia last October and see all the sights of the films I played on every hospital visit and have been a fan of since the age of 9. But financially I didn’t have the funds. I hope to rectify that this year. For Rocky and for millions running the steps of the Philadelphia Art Museum it is a rite of passage. I never thought of it back when I first longed to do it, but for someone with an exponentially decreasing lung function it would be a true achievement. I want to do it before my lung function decreases so much I might never be allowed to travel to do it. I think I could quite easily die happy, arms aloft Rocky style at the top of those steps:
http://www.youtube.com/watch?v=45NMjKE_myA (via amita7/Youtube.com)
Postscript: If I am being greedy I might add that I would love one day to meet Kenny Dalglish. I never thought I’d live to see the day he returned to Liverpool. I never thought I would see us triumph in Istanbul in 2005 so maybe there is still time to bring the title back to Anfield before I shuffle off this mortal coil.
Trevor O’Sullivan has a degree in journalism from DCU, and tweets at @elvisrockysly.
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