These five ‘thoughts for the day’, written and read by me, aired on RTE Radio 1 from April 27-May 1
When I was a child I liked being in hospital. Being the centre of attention.
At age nine I was diagnosed with Fanconi anaemia, a genetic disorder that affects just two people out of every million born. My bone marrow failed and I wasn’t producing enough blood cells. I was rushed to Crumlin Hospital.
I was constantly having needles stuck into me; I was brought to the operating theatre for emergency procedures. I was put on drugs my parents had never heard of.
I was in a blue-coloured room in St Anne’s Ward. The calming colour of the walls could not calm my parents. They didn’t know if their son was going to live. Even if he did, he had a disease that would challenge him his whole life.
At the centre of all this, there was me. Don’t get me wrong, I didn’t like being poked with needles, or having a tube put into my chest. My hip and back would be sore when I came down from theatre and I didn’t like that either.
But mostly I was excited. My schoolmates had sent me two big packages of cards saying they hoped I got better soon. Hospital TV had more channels than we had at home. I was having my meals brought to me. I could laze in bed all day.
As I grew up, my attitude toward my illness would change. I would see hard times and have to face them. But in those early days this disease was a new adventure. I was living a life I’d never lived before.
The Chinese writer Lin Yutang once wrote that if you can spend an afternoon in a perfectly useless manner, you have learned how to live.
When I was 16, I paid a rather useless trip to Powerscourt Waterfall in Co Wicklow.
At the time, I was in the middle of a bone marrow transplant. Admitted to hospital in late June, I’d quickly become incredibly ill, in violent pain and too weak to lift myself out of bed.
It was now early August, and I was allowed out of the isolation ward for day trips. Even so, I clung to the idea of hospital, and the routine I had there. I was worried about infections and daunted by all the pills I had to take. Hospital was the only place I felt safe.
My parents had brought me to Powerscourt in the hope of rekindling memories from happy childhood days spent there.
But the weather was horrible, and we couldn’t leave the car. The sky was stuffed with grey clouds; the rain seemed to be falling in javelins. I sat in the back seat, listening to the rain and the thunder and the waterfall compete for attention.
And then, despite the absurd failure of the attempt to get me some Wicklow air – I laughed. My mum and dad looked at me. For the first time in a long time, I wasn’t thinking about blood tests or needles, catheters or tablets.
I could spend an afternoon just listening to the rain. And I knew things were getting better.
A lecturer of mine, drawing on Beckett, once wrote of the stages we go through as we move from despair at to acceptance of some tragedy or horror is our lives.
First we tell ourselves: ‘I can’t go on.’ Then we insist: ‘I must go on.’ Finally we simply say: ‘I’ll go on.’
When I returned home from hospital after my bone marrow transplant in 2001, I knew my life had nowhere to go but death. I’d been through months of the most severe pain I could imagine, drifting in and out of consciousness. I’d experienced psychosis and forgotten who my parents were.
My muscles were wasted; I had to learn to walk again. I couldn’t hold a pen because my hands shook so badly.
The most terrifying thing: I’d lost senses I thought I would never lose. The music I’d liked before my transplant, I didn’t know why I liked it. Movies I’d found funny weren’t funny anymore. My short term memory was gone.
I don’t remember how I got better. I don’t remember when the certainty of death slipped away, and hope crept into my thoughts again.
All I remember doing, is taking baby steps up and down our driveway, my mum by my side, as I tried to build up some strength. Every step hurt. Before each one, I’d think: I can’t do any more. My mum scolded me: You must do it. And then I did.
There is an old hospital adage, that the nurses in Our Lady’s in Crumlin used to tell me when I spent time there as a child and a teenager: When you go into hospital, you take two suitcases with you – one to carry your clothes, and another to pack away your dignity.
I have found that it is the little indignities of hospital that are often harder than the big challenges.
In the spring of 2002, months after being released following my bone marrow transplant, I still had to wear a mask while walking around Our Lady’s. I had to cover my nose and mouth, to protect me from infection.
One day, I was collecting blood test forms to bring to the phlebotomist, and a nurse handed me a mask.
I refused to put it on. It just seemed like I’d been through enough. I’d had needles jabbed into me for years; I’d had tubes shoved into every part of my body; during transplant, I’d been too weak to get out of bed and had to be washed by nurses.
Now I was supposed to be getting better – I felt healthy and strong. I wasn’t going to cover my face while walking down a corridor.
The nurse refused to allow me go anywhere.
I’d been worried about my pride; she was worried about my health. In hospital a little indignity goes a long way. I wore the mask that day, and stayed infection free. I’ve never had to wear a mask in hospital since.
One outcome of a successful bone marrow transplant is that, afterwards, the recipient’s body contains the DNA of two individuals – his own, and the donor’s.
During one of my post-transplant visits to Crumlin Hospital some years ago, a nurse needed to take a sample of my own DNA, and she told me that the best way to get a good sample was to swab the inside of my mouth. Swimming in my blood is someone else’s blueprint.
I remember the day I got my new bone marrow. I sat on the edge of my bed in the High Dependency Unit in Crumlin, and my consultant attached a six-inch syringe to the catheter that was coming out of my chest. Slowly, he pushed my new marrow into me.
The extreme sickness and the battles with infection would come later. The process of actually getting the marrow was painless, and lasted just ten minutes.
The marrow had been harvested from my American donor less than twenty-four hours before. I didn’t know who my donor was; he or she was willing to undergo a painful bone marrow harvest in order to save the life of a teenager he or she had never met. For ethical reasons, we would never be allowed to meet.
As my new marrow was injected, I wondered about my donor’s interests, his or her hobbies, what he or she liked to eat for breakfast.
Someone I didn’t know was giving me back my life, right down to new DNA. I could offer them nothing, except thanks they would never hear.