Lifestyle Health

Sunday 16 December 2018

Living with low life expectancy

Ben Murnane has a rare condition that means he may have a year to live, yet the author tells Lorraine Courtney he's making the most of his time

STRAIGHT TALKER: Ben Murnane gives an honest, courageous account of the hand he has been dealt

I'm 28, and the average life expectancy is 29, and that is something I think about

In his vivid account of his life so far, Ben Murnane talks about the realities of growing up and living with Fanconi anaemia. It is the story of his early life, not just as someone living with a chronic illness, but as a child, a teenager, a student and an adult wading his way through all of the conventional problems we all have thrown at us.

Fanconi anaemia is a rare genetic disorder that affects two or three people in a million. It causes bone marrow failure and low blood counts, leading to low energy and increased risk of injury and infection. FA patients have a higher risk of contracting cancers, and the average life expectancy is only 29.

Murnane, who's from Wicklow, wasn't diagnosed until he was nine, even though his parents had always felt that something wasn't quite right. Around the age of eight or nine he was suffering periods of very low energy and developed red spots on his skin, so his mother took him to their local GP for a blood test. Fanconi anaemia was eventually diagnosed, and a new world of tests and medications awaited.

"I was put on steroids so my body weight changed. I became bloated and overweight and this eventually led to a period of anorexia," he says.

"I developed acne as a result of the steroids. The steroids also messed with my brain so that I used to have these periods of mania where I used to dash up and down the garden pretending I was an Olympic swimmer or something.

"My medication was later adjusted and by the age of 12 I was well enough to live a normal enough life, but I wouldn't have had the energy of most teenagers and I was pale and slight with skin problems."

At 16, Murnane had a bone marrow transplant. His book, a memoir of living with FA entitled 'Two In A Million', is both a coming-of-age tale and a stark account of spending large chunks of your time sick.

"Having a lot of time, at home or in hospital, means that you're often just sitting around," he says.

"I always had the urge to write, and the natural thing for me to write about was myself and my own condition. Writing helped me explain to myself what was happening to me and to get down on paper my own feelings.

"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. I also know that a lot of doctors and medical staff wish they had more time at the end of the day to facilitate a more rounded approach to the patient, in terms of not just looking after the physical disease.

"Maybe this is where the arts can step in and help patients become well, rather than simply stay alive."

IN striking a remarkable balance between offering a memoir of life with a chronic illness and a memoir of a life simply lived, Murnane has fulfilled his lifelong dream to write – and to write well.

"The book has also been made into a multi-award-winning short film with Emma Eager," says Murnane.

"The film utilised teenagers living with chronic illnesses who took on the various roles from costume and set design to acting, assisting with direction and editing. It was amazing to watch them make connections, to listen to conversations about their shared experiences, not just in terms of their illnesses but in terms of what they're going through in life itself.

"Fanconi anaemia is part of my life, like any other part, and it can be a positive as well as a negative. I've been able to write about my illness and get published. At the same time, there have been plenty of times of horrible pain, suffering and challenges I felt I was facing alone as my friends lived more 'normal' lives.

"I also know that there will likely be challenging times in the future – my risk of cancer is still much higher than the average person's.

"I'll never have children because of this disease. I have check-ups constantly. I'm 28 now, and the average life expectancy is 29, and that is something I think about. But you can't let such thoughts govern your every day; everybody dies, everybody faces challenges. I'm lucky to be able to do the things I want to do, writing, pursuing new goals and dreams."

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