Emotionally direct, with ‘the ordinariness/all hearts/demand’, these poems are fascinating documents in a remarkable journey of survival, testaments in every line to a brave, unbowed, enduring heart—anchored in the ordinary world, yet not afraid to dream.

       -        Eamon Grennan

Feather Silence is a deeply personal collection that charts the years after Ben Murnane was diagnosed with one of the rarest genetic diseases in the world, Fanconi anaemia: his many agonising days in hospital; those first nervous steps into the world of love; the joy and the pain of memories and the little details of life.

Written alongside Ben’s memoir Two in a Million, these poems shed new light on the remarkable story of illness, friendship and love told there. These are the thoughts that occupied a young man whose life was on the brink, and they read with insight and beauty.

Praise for Two in a Million:

‘riveting and beautifully written’ – Sunday Independent

‘fascinating and emotionally charged… peppered with humour and an almost unsettling level of honesty… This is a remarkable story of an erudite young man’s fight for life’ – Evening Echo, ****

‘inspiring… exceptionally moving’ – Ireland’s Own

Ben Murnane was born in 1984 and graduated from Trinity College in 2008. He has written for The Irish Times, the Irish Independent, the Sunday Independent, the Evening Herald, the Irish Daily Mail and RTÉ Radio. He is the author of the memoir Two in a Million and co-author with Katherine Farmar of the guidebook Dublin on a Shoestring.

Feather Silence published by A&A Farmar, €9.99.

All copies bought here signed by the author - €9.99 + €2.20 postage and packaging to anywhere in the world. Usually dispatched within one working day.

Had a fun experience the other week, got my acting on to do a little interview for this shortfilm about donating blood and where donated blood ends up (in me - as the case may be!). It’s a little promo for the Irish Blood Transfusion Service, filmed by some Masters students at Independent Colleges in Dublin. Look - it’s me standing on a bridge in the sun! And getting on the Luas, which in real life I never get anywhere at all! That’s the magic of the movies for you.

One friend pointed out that the line ‘I need other people’s blood to live!’ sounds a bit dodgy. That’s right, I never had Fanconi anaemia, I’m just a vampire. No wonder I’m doing my Masters thesis on Twilight. Transfusions are where it’s at though, boys, bloodsucking is so last century it’s not even funny.

Two in a Million led not only to the next book Dublin on a Shoestring, but also to a deadly job writing for supplements and features with the Irish Independent. It’s mostly the day job that has been taking up my time of late – a very different type of writing to what I’ve been used to all these years. You can take a look at some of my work, and also find evidence that I haven’t been a complete lazy bum, on my Issuu profile (brilliant thing, Issuu).

Then, in some wild act of folly, last September I decided to start studying a one-year full-time Masters in Popular Literature at Trinity College. I am enjoying the course – we get to read porn and comics! – and I do like moving between the two worlds of work and study. But it takes time for extracurricular activities – i.e. updating this site and continuing my own projects – greedily away.

That said, I have been working on a new book which you should be hearing something about very soon, and if anyone is interested in reading advertising features (as I know so many of you are!), be quite sure to check out my Issue site, which is updated regularly enough.

I remember being

so moved by him, by

his being who he is,

the sheerness of his voice

climbing somewhere in soft words,

skipping nothing human,

loving that he could love.

Night skies moved with his feet, stars

pocketing themselves

in and out of the stage lights:

the wonder of socks,

silver glint

sparkle

wink

twirl:

glitter moments.

But –

There were times when he slowed,

curled over

like he wanted a shell.

He wanted us to smile and cry

for him.

Part of the act.

Read: Five Reasons Not to Be Sad about Michael

Dublin is a fantastic place. The birthplace and hometown of cultural greats, it is a young capital alive with nightlife, great restaurants, comfy accommodation – and now, terrific bargains.

As you wander the city, you’ll need a guide to take you past the high street sale signs to where true value, and the real Dublin, is found.

Shoestring Dublin is the Dublin of the quiet streets, the second-storey cafés, the little places tucked away in unlabelled cul-de-sacs and only advertised through word of mouth.

Opinionated, practical, entertaining – Dublin on a Shoestring is the original insiders’ guide.

Whether you’re just visiting or planning to stay, this is where to find:

-          Dub’s best pubs – including where to get the cheapest pint in Dublin!

-          The best and best value restaurants – eat out without remortgaging your home

-          Where to shop (without a gold card)

-          Insider recommended entertainments from cinema to live jazz

-          Somewhere to stay and somewhere to live – personally inspected accommodation

-          Must sees – where Dubliners take their visitors

-          Dublin for free – enjoy the city without spending a cent

The original Dublin on a Shoestring was published in 1998, just as Ireland was coming to terms with its newfound prosperity. The second edition was released in the headiest days of the boom, in 2002. Now, this completely revised third edition, by Katherine Farmar and Ben Murnane, offers the ultimate guide to a city that’s changing once again.

More than just a guidebook, Dublin on a Shoestring is a snapshot of a vibrant capital in turbulent times.

Order Dublin on a Shoestring here today – the brand new, completely revised third edition by Katherine Farmar and Ben Murnane.

€9.99 + €2.20 shipping to anywhere in the world. Usually dispatched within one working day.

Published by A&A Farmar. All copies bought here signed by Ben.

What the press said about the previous editions:

‘A cool pocket-sized treasure, telling it like it is… even tells the natives things they didn’t know.’ – Sunday Tribune

‘A little gem… researched by real people who have discovered how to have a ball in Dublin with as little cash as possible.’ – RTE Guide

‘Buy this book the second you get off the plane’ – Irish Post

Monday

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.

Tuesday

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.

Wednesday

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.

Thursday

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.

Friday

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.

The summer of ’97 was one of the most enjoyable of my life. The main reason for this was that, in July, I attended Michael Jackson’s HIStory World Tour concert at the RDS, Dublin.

I had seen an advertisement for his Wembley concerts in a British magazine, and had actually talked to my parents about maybe going to England to witness my idol perform live. Shortly after I spotted the ad, however, it was confirmed that the King of Pop would in fact be coming to Ireland as well. I pleaded with my dad to try and get tickets, and he was happy to make the effort. The day that those precious slips of paper went on sale, he phoned Ticketmaster from work, his credit card in hand.

All that morning and half that afternoon, I couldn’t concentrate on anything. The tension was just too much! Was I going to get to see one of the world’s finest singers and dancers on a stage in my own country?

Sometime after lunch, Des rang me at home.

He told me that, unfortunately, he hadn’t managed to get tickets.

I was gutted.

Then he told me that he was lying. He had two tickets for the standing area of the arena.

Elation made my head so light, I thought I would faint!

In the time between Des’s phone call and the evening of the concert, I tried not to listen to too many Michael Jackson songs, so I would enjoy all the more the ones he performed on the night.

This was my first pop concert. My dad and I arrived at the RDS on the evening of July 19, 1997. I was kitted out in my favourite black jeans and black jacket, along with a black t-shirt with Michael’s ghost-white face imprinted upon it. As Des and I wandered towards the RDS arena, I gawked wide-eyed at the sights which are common to any big pop concert, but which were all new to me. There were throngs assembled around hotdog stands and burger vans, and crowds queuing at stands that were selling programmes and tour merchandise. You could also buy cardboard ‘periscopes’ that were about a foot long, and had a system of mirrors inside them. The ‘periscopes’ were designed so that, if you happened to be a shorter person situated in the standing area of the arena, you could hold one end of this apparatus to your eye, and hold the other end straight up in the air, and then the action from the stage would be reflected into your view. Clever!

My dad and I didn’t buy one of those periscopes, but he did purchase a HIStory World Tour programme for me. That photo-filled book still occupies a treasured place in my room, alongside my dozens of Jackson albums, videos, and DVDs.

After he’d forked out the cash for the programme, Des and I leisurely made our way over to the outdoor concert arena itself, and lodged ourselves in a spot near the edge of the gathering mass of bodies, about a third of the way back from the stage. I remember feeling trapped inside this forest of fans. In the standing area, there wasn’t even room to swing your arms. Later in the night, a girl who was beside Des and me fainted, and my dad helped her boyfriend carry her out of the crowd and fetch assistance.

Before the show began, however, I wasn’t concerned about the claustrophobic crowd. I was just awed as I gazed at my surroundings. The main focus of my wonder was the massive stage, to each side of which were colossal banners of a statuesque MJ in military garb. The atmosphere of anticipation was heightened by the sounds of Michael’s childhood hits, which were being played via giant, invisible speakers.

I remember eavesdropping on a conversation between the two men directly in front of Des and me in the fan forest. Both must have been in their late twenties or early thirties.

‘Where are you from yourself?’ one asked the other, in a distinct Dublin tongue.

‘Belfast,’ the second fellow replied, in a Northern Irish accent.

‘That’s a long way to travel,’ the first guy remarked.

‘Oh, well, I love Michael,’ the Belfast man responded.

So there are others like me in the world, I thought.

Before long, the night’s support act, a band called Human Nature, appeared onstage, and bashed out a few numbers. As the group departed, one member yelled that we were about to witness one of the greatest shows on earth.

That wasn’t hyperbole.

Another short while passed. Then, suddenly, loud machine gun fire rang out over the RDS, and those two enormous posters of the militarily dressed MJ fell from either side of the stage, exposing giant screens. A third screen moved into view above the stage itself.

These monitors came to life, and we beheld a ‘space warrior’ in a one-man rocket ship. Michael Jackson’s soft voice asked from within the warrior’s helmet, ‘Mission Control, what’s my destination for today?’

‘Your destination is Dublin,’ a computerised female voice replied.

‘Open the launch doors,’ Michael commanded. ‘Let’s make HIStory.’

And then the rocket ship took off, hurtling down a rollercoaster of images from human history… 

There was an almighty crack onstage, and white smoke rose into the air. The smoke wafted away, and a resplendent rocket ship stood before our eyes, emblazoned with letters and numbers: ‘MJ-2040’.

The door of the craft was kicked open, and out stepped the space warrior, clad all in gold. The screaming of the fans reached its first crescendo of the evening.

Slowly, the spaceman’s glistening armour was shed, to reveal the King of Pop himself.

Then Michael just stood there, motionless.

Suspenseful murmurs shivered through the crowd, before the opening bars of the song Scream were scratched out… And the stage exploded into a two-hour song-and-dance extravaganza, featuring gangsters, zombies, Jackson hanging out of a cherry picker above our heads, and an actual tank onstage!

What a star he is.

Of course, Des and I hadn’t bought a ‘periscope’. And, I was pretty small in comparison to the people around me. So, in order to catch the onstage action, I had to sit atop my dad’s shoulders! Things got a bit precarious up there on occasion – especially when Des started bopping to tracks like Billie Jean and Blood on the Dance Floor.

At the end of the concert, a silver-jacketed MJ shouted ‘I love you!’, and the crowd responded in kind. The flags of all the world’s countries flashed rapidly on the screens, and fireworks flew into the sky, bursting and shattering their colours across the night.

Tired of soggy but expensive supermarket sandwiches? Four Irish Michelin-starred chefs tell Kevin Flanagan how to spice up his lunchbox at a fraction of the cost. Additional reporting by Ben Murnane.

We’re all being told to tighten our belts — perhaps that means we should be watching what we eat as well as counting the pennies. Even with shops offering value deals on sandwiches and soups it’s never as cheap or as satisfying as making your own.

I spoke to four Michelin-starred Irish chefs and asked them to come up with some simple, healthy, delicious and affordable recipes — for salads, pasta, sandwiches and soups that you can carry in your Tupperware lunchbox to work, college or even school. You can eat a homemade Michelin-starred lunch for around a euro — and that has to beat the local deli or supermarket any day.

Read the full article and get the recipes here.

Bringing you quirky Irish thoughts and stories – posts so far include:

Why are Irish women stupid idiots?

Toilet etiquette

And regular features such as the GrafittiMetre and Irishman’s Daily News.

Check out the Irish Network China’s cool logo and the best grafitti in Dublin. Vote in our Kevin Myers poll!

Post comments, join us on Twitter and most of all send in your own quirky Irish stories!

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