I’m busy as a bee’s bum at the moment but I hope to write something soon enough about the incredible journey I’ve been on since Two in a Million was published last autumn. In the meantime I’ve been posting some of the book publicity to prove to you all how utterly fantastic I am (more: http://benmurnane.com/?p=502).
Below is a piece I wrote for the Daily Mail last October – it’s basically just the story of the book, shortened.
The buzz, as they say, is deadly.
My Journey with Fanconi Anaemia (their headline was A VERY BRAVE JOURNEY, but it seems a bit conceited to put that here)
by Ben Murnane
from the Irish Daily Mail, October 14 2008
What’s your earliest memory? Mine is of having a tube shoved down my throat. I was three years of age – pale and not growing the way I should. My concerned parents took me to Our Lady’s Hospital for Sick Children in Crumlin for some tests.
I had a bone scan, had that tube shoved down my throat… and the doctors decided there was nothing wrong with me. Life went on.
I started school, started making friends, my two sisters were born. But still, I was short for my age, small-boned and pale. I had patches of darker discolouration on my skin and double-jointed thumbs.
Then, when I was eight years old, they started. Sudden, excruciating stomach-aches that would make me struggle to stand up. Red dots began appearing on my skin. I was so exhausted that I couldn’t play with my classmates anymore.
My mum, like my dad, was frantic with worry. She took me to our GP for a blood test. I remember the slim needle going into my skin and the blood filling the syringe.
I just wanted to get back to school and not have to care about needles.
When the results of my blood test came in, I was rushed to Crumlin Hospital. My bone marrow was failing and my blood counts were dangerously low. I went through two weeks of doctors’ examinations, anaesthetics and needle-prods.
I was eventually diagnosed with Fanconi anaemia (FA), a genetic disorder that only two people in every million are born with. My parents and I had no idea but the doctors knew: my journey, my battle with serious illness was just beginning.
FA affects every cell in the body. It damages the bone marrow which causes blood cell production to decline, leaving the sufferer chronically tired and uncommonly vulnerable to infection. Even catching a simple cold can be life-threatening.
FA patients tend to be shorter than average and to have physical abnormalities such as my wonky thumbs. People with this disease are hundreds of times more likely to develop cancer than members of the general population.
Only three men with FA have ever fathered children; in women fertility is reduced and menopause comes early. The average life expectancy for a person with Fanconi anaemia is 22 years of age.
After I was diagnosed, I was given six months to live. I’m now 23, having just finished my degree in Trinity College. But it has been a very long road to here.
When I came out of hospital after that fortnight in 1993, I had a tube in my chest – for giving medicine and taking blood samples – which stayed there for three years.
I was put on a steroid in the hope that it would boost my blood counts. It was months before my immune system was strong enough for me to go back to school.
Those early days were harder on my parents than on me. They didn’t know whether I was going to live, where nine-year-old me didn’t really think about dying.
Once I got over the tube in my chest, the tiredness, and the fact that I had to swallow a pill every morning – having Fanconi anaemia was actually kind of cool. I had something no one else I knew had – I was special!
This attitude changed fairly quickly. One thing you understand when you live with a serious illness is that life is about compromise: life will make you sacrifice.
When I was 11, I stopped eating those normal things 11-year-old boys eat: crisps, burgers, sweets. In fact, I tried to stop eating completely. My anorexia was caused by the steroid I was on – obsession with food was a known side effect. The drug was keeping me alive but at a high cost. It was wreaking havoc on my home and school life.
My parents found sums under my bed that I had used to work out my daily calorific intake. I became so furious with them after this that I would hit them. I couldn’t be left alone with my young sisters because my parents were afraid I’d become violent.
I hated myself and the world so much. There are times when you feel in need of a dream, some reason to keep going. Some find it in religion, others in their work – I found it in a crush on a classmate.
When my blood counts had improved slightly, my steroid dose was reduced. Without the drugs in my system, I began eating healthily again and settled back into my formerly placid temperament.
I was ready to throw myself into the world… or at least at this girl Emma who I’d always fancied.
But I was a diseased boy, and I knew that’s what I was. My sick body didn’t deserve any contact with a beautiful girl. Even though I liked Emma and she seemed to like me, I struggled to hold her hand without shaking from nerves.
I went into secondary school tired and alone. The new routine left me reeling. My eyes were sunken and my skin became dry and cracked: it was like I had dandruff all over my face.
My condition made me ripe for teasing by some of the other students. My friends were terrific but they didn’t really understand. No one knew what I was going through – I had a disease only two people in a million had.
I could feel my own body weakening and was incredibly self-conscious about it. The opposite sex basically didn’t exist for me during my teenage years.
When I was 15, I faced my greatest challenge with this disease. The steroid treatment I was having stopped working completely.
I was brought to Crumlin Hospital and my consultant said that I had only two years to live. He gave me a stark choice.
I could take these two years and make the best of them, or I could have a bone marrow transplant, which came with a 50 per cent chance of success.
If the transplant went well, my life expectancy could be prolonged indefinitely. If it didn’t work, I would be dead within a few months. It didn’t seem like the kind of decision I should have to make at 15.
In the end, I chose to have the transplant. I became the first person in Ireland to undergo a new type of transplant involving a drug called fludarabine, which suppresses the immune system.
It didn’t start off too badly. I had my radiotherapy and then chemo. I was put into isolation in the High Dependency Unit in Crumlin.
I couldn’t have books or letters because they might carry germs. I was on a specially prepared diet, so I couldn’t eat most of my favourite foods.
But I pretended I was in a hotel. After all, I had a room to myself with a TV and my meals were being delivered. However, that sweet hotel illusion dissolved pretty quickly.
Within 24 hours of being admitted to hospital, I was suffering rigors and spiking temperatures and the most severe diarrhoea imaginable. I had pains everywhere. I was too weak to even walk across the corridor to the toilet.
I was fed through a tube in my nose but I puked everything up. I lost most of my vision for a time and couldn’t hear either. I spent the days flitting in and out of consciousness.
These symptoms lasted for two months. When I was well enough to cry, I cried. I was a 16-year-old boy, supposed to be growing independent. Yet with each passing day I became more dependent on pills and injections, doctors and nurses.
In my third month of transplant, thanks to one particular drug, I became psychotic. I forgot who my parents were. My mind constructed a nightmare life, in which I’d been sent to a juvenile home.
The hallucinations got worse and worse. One afternoon, my consultant came to visit me. I saw him deathly grey and dripping wet. My mind told me that he’d drowned himself the night before. I freaked – it was his ghost!
When I came out of this madness, I was in ruins. After my weeks of psychosis, I returned home from Crumlin to recover. I was still on anti-psychotic drugs, as well as two-dozen other pills per day.
My muscles were wasted and I had to learn to walk again. I couldn’t hold a pen because I was shaking so much. I no longer liked my old music or found my favourite comedies funny. One afternoon my mother asked me how I was. ‘If there was an easy way to kill myself,’ I said, ‘I’d kill myself.’
I don’t really know how I got better, or at what point I was no longer certain I wanted to die. But I did get better.
I did start hoping to live. I began taking baby steps down the hall. I was slowly weaned off all the drugs.
After a year at home, I was able to return to school. I did my Leaving Cert and started college, and have had several healthy years since. I graduate next month with First Class Honours.
I won’t ever be free of Fanconi anaemia. Down the road, there is a very high risk that I will develop cancer. I will never be able to have children.
But I have my own life, thanks to the miracle workers in Crumlin Hospital and the love and support of my family and friends. Right now, my life expectancy is as good as anybody else’s. And I’m not looking back.
- Two in a Million: A True Story about Illness and Love by Ben Murnane is published by A & A Farmar, €11.99
© Ben Murnane 2008, all rights reserved