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Ben's Hilarious Life

‘You Have To Live With It’

This speech was given on Sunday, May 5 2013 at the Terrace Banquet Centre, Vaughan, Ontario. Before the speech, there was a screening of the short film I made with Emma Eager, Two Suitcases. I was invited to speak at the event by Lorne Shelson, President of Fanconi Canada, and was introduced on the night by Lorne’s son, Aaron. Some folks were interested in reading the speech so I thought I would post it… The speech includes some material drawn from the following of my past works (!): Two in a Million: A True Story about Illness and Love (A&A Farmar, 2008); ‘Five Hospital Days’ (A Living Word, RTÉ Radio 1, April 27–May 1, 2009); ‘The Patient Writer: Finding Meaning in Authorship and Illness’ (Hektoen International, vol 5, no 3, summer 2013). Hat tip to Hugh Doherty for the final line of the Armstrong quip.

Remarks, 2013 Ontario Fundraiser for Fanconi Canada – Ben Murnane

Thank you very much, Aaron, for that generous introduction. Thank you very much to Lorne and his amazingly hospitable family, and to Fanconi Canada. It’s a true honour to be here.

I hope you enjoyed Two Suitcases.

When Lorne first invited me here to speak this evening, I asked him for some advice on the speech. He told me that there would be a lot of lawyers in attendance, and given their short attention spans – I should keep things brief.

I actually studied law myself, for about a week. After studying theatre at university, I had fancy notions of becoming a barrister. It seemed to be the only way to get properly paid as an actor.

I remember my first evening in King’s Inns in Dublin, beginning the Diploma in Legal Studies. One of my fellow students remarked that this was the first day of her 10 year plan.

I think that’s probably when I decided to give up the law. Far too much planning. Far too many serious consequences. Stick to the writing.

Of course, the reality of living with Fanconi anaemia is that it’s often difficult to think 10 years ahead.

I was diagnosed with this disease when I was nine years old. This is an illness that affects every cell in the body. The average life-expectancy remains just 29.

Everybody affected by FA, as a patient or as someone who knows someone with the illness, has their own story to tell.

What I would like to share with you here this evening, are just three things that I have learned from living with Fanconi anaemia.

The first is that having Fanconi anaemia, makes people think that you’re special.

I mean that in several senses. Illness, particularly a chronic illness or a condition with low life-expectancy, is still a source of fascination in today’s society.

In the course of publicity for Two Suitcases and for my memoir, Two in a Million, I have been the subject of attention-grabbing headlines myself:

‘Living with low life expectancy’

‘Defying death at age 23’

Or, my favourite, just for its sheer length:

‘My rare blood led to anorexia, violence, a year in isolation, suicide thoughts and a dangerous life-saving operation … But life’s still good!’

That one pretty much covered everything.

I was doing another round of publicity recently, and I joked that Lance Armstrong and I have used all the same stuff: EPO, blood transfusions, testosterone, cortisone… But all I ever got was a lousy third place in a sprint on school sports day.

Of course, now I have as many Tour de France titles and Olympic medals as him as well.

And all the drugs did keep me alive, so I can’t complain too much.

Disease is often thought of as an extreme: akin to poverty, or a negative view of old age; a nadir of sorts – we ill are closer to death than the ordinary living. We are exiles from whatever constitutes the mainstream experience of grounded, healthy middle-class life.

It is this difference which can occasionally make us persons of public interest, special cases for media attention.

Having a rare illness also naturally makes you a special case for doctors’ attention.

Before my bone marrow transplant, over a decade ago, I had a pre-cancerous lesion removed from my tongue. The doctor who removed it took photos during the procedure, and I later found out that the pictures had been put to use in a medical reference book in the Dublin Dental Hospital.

It was nice to discover that, even when I wasn’t physically present in the hospital, I could still be used as a teaching tool!

I was thinking about this recently, because so much of the attention I’ve received during my life, so many of the little pieces of me that are out there in the world – whether it’s my memoir, or the short film you just saw, or those pictures in the medical textbook – they’re all to do with my illness.

It is a universally held truism that a person with a serious illness does not wish to be defined by that illness: we want to be known as ourselves, beyond or outside of the illness. Part of how I coped with Fanconi anaemia as a boy, was dreaming of growing up and becoming a writer, leaving childhood disease behind.

Well, now I am grown up, and I am a writer with a few published works, but I haven’t left FA behind. I still live with the disease, but more than that, I find that I can’t stop writing about living with the disease – it’s been the basis of my first book, the basis of Two Suitcases, and several pieces in newspapers and elsewhere.

So, an illness like FA, which has profound effects, can sometimes seem like it encompasses your whole life, even those parts of you that you might hope were unconnected to it. You cannot avoid it being an essential element of who you are. Maybe that does make you different, special. But the life of a person with an illness, is also about what he or she does with that experience of illness.

I was invited by artist and my co-director Emma Eager, a woman I went to university with, to get involved in the Two Suitcases project. Emma works with Helium, the Irish arts and health organisation which produced the film.

We were lucky enough to get funding from the Arts Council of Ireland to make Two Suitcases with the involvement – both on and off camera, as you saw – of teenagers who themselves were living with chronic illnesses. We were subsequently funded to run a series of writing and filmmaking workshops and to make another movie with a wider group of teenagers.

After my memoir was published, I was humbled when a number of doctors told me that the book helped them to understand better the patient experience. If Two Suitcases also contributes something in that respect, then I think those of us involved can feel we have done something worthwhile.

The process of making the films also provides opportunities for young people living with illness, that wouldn’t be there otherwise, and I hope that is a worthwhile thing.

I could write on my own, and that helped me to survive my disorder. The distinction of a project like Two Suitcases is that film enables people to express their creativity in myriad ways, in front of and behind the camera. It takes more than an individual. People with common interests and experiences produce a shared meaning.

And that brings me to the second thing I’ve learned from having Fanconi’s. Self-evident though it may sound, life is a shared encounter. Everybody is connected to everybody else.

I don’t know if any of you have seen the recent movie Cloud Atlas, based on the novel by David Mitchell. It sort of divided opinion; it was one of those ‘love it or hate it’ things.

I thought it was incredible, I have to say. The film consists of six interwoven stories throughout time, space and history. It’s part political thriller, part sci-fi epic, part dark comedy, and it’s just remarkable how the creators manage to string such disparate elements together into a meaningful and highly entertaining narrative, with background references to philosophy and the importance of art.

The key theme of the movie, is how one person’s actions can impact another person’s life, even across time and geography.

This is something that I think can resonate with anyone who’s had a matched-unrelated donor bone marrow transplant.

I was in hospital for nearly three months in total during my transplant period. But I remember the day I received my new marrow, a Tuesday evening in 2001.

What’s terrific about a bone marrow transplant, as opposed to other types of transplant, of course, is that the donor doesn’t have to die before he or she can save the life of another. And, for the recipient, there is no surgical operation. A friend once told me that he thought I had all my bones sliced open, my old marrow scooped out, and my new marrow stuffed in. Nothing as dramatic as that took place took place.

I sat on the edge of my bed in the High Dependency Unit in Crumlin Hospital in Dublin. My consultant attached a syringe to the catheter coming out of my chest, and slowly 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.

This was a matched-unrelated donor transplant, so I didn’t know who my donor was; I only knew the marrow had come from the United States. The American donor had been willing to undergo a painful bone marrow harvest, in order to save the life of an Irish teenager he or she had never met. For ethical reasons, we never would 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.

A person I didn’t know was giving me back my life, right down to new DNA.

I do think it’s strange that I now have someone else’s DNA swimming in my blood. I used to joke that if I ever turned to a life of crime, the ability to leave someone else’s DNA at the scene could come in very handy.

I am alive today because of someone I have never met; all I can offer them is thanks they will never hear.

It would be a lie to say I think about that every day, but I do think often about the generosity of the donor.

Sometimes being alive is a terrifying responsibility. I suppose that’s even more true for someone living with a life-threatening illness, because we are more intimately acquainted than most with the thin line between life and its opposite. And, we are dependent, to a greater degree, on the help we can get from parents, friends, doctors – and, indeed, donors of all kinds.

Living up to one’s own expectations is a daunting prospect – never mind living up to the expectations of all those who want you to live and who contribute towards that goal.

I said at the outset that everybody affected by FA has their own story to tell. What I have been struck by, however, in the course of corresponding with other FA patients and families, is how much we all have in common – whether it’s experiences of bone marrow transplants, or more intangible things, like a desire not to take anything for granted.

I probably shouldn’t be saying this at a fundraiser for Fanconi Canada, but I’m usually not a big person for support groups – mostly because I hold to what Groucho Marx said: ‘I don’t want to belong to any club that will accept me as a member.’

I’m a loner – I sit on my own and write. I try and steer clear of other people!

Organisations like Fanconi Canada, the FA Research Fund in the States, and Fanconi Hope in the UK, do such important work, however.

The reason we are all here this evening, is to contribute towards the search for a cure for this currently incurable, life-threatening disease.

I often think, though, that the most vital function of organisations like Fanconi Canada, is the support and information they provide in the here and now, to patients coping with this disease every day. The search for an ultimate cure goes on. But thanks to the development of successful treatments, and the support of FA groups and affected families worldwide, life goes on too.

And so, the third thing that I have learned from having Fanconi anaemia, is that you have to live with it.

We will never forget those who are no longer with us. As a patient with Fanconi’s, however, I can’t live my life, either by waiting for one day when I may be entirely free of this disease, or by dwelling on the statistics to do with life-expectancy, cancer incidence in people with FA, and so on.

You have to do what you can, when you can.

This is by no means always easy. There have been many times when I have been in despair about living with this disease.

When I returned home from hospital after my bone marrow transplant, it did feel as though 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 as a reaction to the drugs, 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. My short term memory had disappeared.

I say in Two Suitcases, that I don’t really remember how I got better, and that’s true.

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 in 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.’

All I remember doing, in the months after I came home from transplant, is taking baby steps up and down our driveway, as I tried to build up some strength. My mum was by my side.

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.

Since then, I have been lucky enough to see many of my dreams come true: from working as a writer and having my books published, to teaching at the University of Dublin, Trinity College.

I look back now, and I always think, that if I can keep taking small steps, things must be going well.

I hope that everyone with FA can continue to step forward. I know that organisations like Fanconi Canada will continue to help them do so.

Thank you all so much for listening to me this evening. I hope you enjoy the dinner!

Thank you.


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