I was on radio and TV recently, talking about the low life expectancy associated with sufferers of Fanconi anaemia, as well as my memoir of living with the disease, Two in a Million, and the short film based on the book, Two Suitcases. I chatted to Matt Cooper on Today FM and Dave Fanning, filling in for Ryan Tubridy, on 2FM. I also talked to Sybil Mulcahy and Martin King on TV3′s The Morning Show.
“I know my own doctors said that reading the memoir was of help to them in terms of how they approach patients. They said it gave them insight into the patient experience. I think the arts can help inform what doctors do in that sense.”
You can buy my memoir and my poetry collection here for only €8, including free shipping to anywhere in the world. And the guide to Dublin I edited with Katherine Farmar is now only €5! Don’t miss out on this opportunity – if you don’t buy my books I’ll have to burn them, and book-burning is a sin! All copies are signed – once I make it big, they’ll be worth millions!
Two Suitcases is an innovative and award-winning new short film, written and directed by Emma Eager and Ben Murnane. Made with the involvement of teens with chronic illness, the film describes (in 11 minutes) the journey of Ben’s bone marrow transplant and recovery, combining a myriad of storytelling methods, including live action, animation, puppetry, home movie footage, and original music.
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!
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 publicity that’s appeared online to prove to you all how utterly fantastic I am. 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.
Mum, Dad, and I pulled into the car park at Our Lady’s Hospital for Sick Children at around lunchtime. The three of us prepared to plod the familiar walk to St John’s Ward. I paused just before entering the hospital, and let my parents move a few steps ahead. I looked out over the car park, and breathed in deeply. I knew this would be my last breath of fresh air for a long time. ‘Ben?’ my mum called, from beyond the hospital doors. I turned. ‘I’m coming,’ I said.
Well, we had the book launch just under two weeks ago and copies have now started trickling onto the shelves. It was quite a thrill to see it in the Irish Biography section of Waterstone’s the other day. I felt like saying to the other browsers around me: ‘Hey – THAT’S MY BOOK! I WROTE IT!! WHY AREN’T YOU BUYING IT??!!!’
‘I think this is crap, basically,’ John Douglas said to me. The ex-English teacher and I were sitting at opposite ends of the kitchen table in my parents’ house in Connemara, Co. Galway. It was well into the night, and we both had copies of the second draft of my book, Two in a Million, open in front of us. This was the third night in a row that John had come to the house to go through his ‘notes’ on my draft. He was currently cutting into a section where I apparently sounded like ‘Prince Charles describing his day’.
Two in a Million describes what it’s like to live with a life-threatening illness, to undergo a life-saving procedure, to recover slowly and try to live normally as a student in Dublin. Told with humour and honesty, this is a remarkable story.