Histories: Living with a congenital heart defect

I haven’t been blogging as much as I would have liked over the past few months, but I’ve decided that I would post this, which is to be published in HeartstringsHeartstrings, for those of you who have never heard of it, is a publication produced by Heart Children Ireland – an organisation set-up in 1990 to provide support for children, and the parents of children, born with congenital heart defects. As someone who was born, and lives with a congenital heart defect I was delighted to be able to share my story with the magazine and decided to reproduce the piece here on my blog.

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History is my whole life. I write it, read it, teach it. We all have histories. There’s our personal history, our family history, our local, national, and even global histories. We all have medical histories too. We are shaped as much by these as we are any other history we have. Our medical history is in a sense the truest history of our lives. We know its beginning, and its end, but its middle can be truly extraordinary.

My story is a familiar one to thousands of Irish families in the past decade. On April 2 2015, I left Ireland for a new home, and a new life. Having finished university, I was unable to find secure work and so I decided to follow most of my peers and look elsewhere. I have lived for just over 12 months now in Prague, where I work as a proof reader for an online university, and teach the history of the Cold War to visiting American students at Charles University in the city. Sometimes to make a little extra, I tutor people in English on the side. I really enjoy my life here – a city steeped in history, there is the beautiful architecture, the wide river and its beautiful bridges, the numerous parks, and the wonderful public transport that opens up the whole of the Czech countryside to me. And I look forward to moving again in a few months’ time.

Since living here, I have met a wonderful partner. She is from Norway, and together we plan to move there to live and work in the near future. When I moved to Prague, I was terrified. I was scared of facing a new language, a new environment, and a new way of life all without the support of a family which since I was born, has provided a rock of stability and support.

I was born on 19 February 1988 in Airmount Hospital in Waterford. I was born with transposition of the great arteries (sometimes called transposition of the great vessels, TGV). A very sick child, I was brought to Dublin to Our Lady’s Hospital for Sick Children in Crumlin for treatment, and eventually, underwent a Mustard operation on my heart at around 11 weeks. Like most children born with a congenital heart defect, there are plenty of things which, growing up, I could not do.

I grew up in a soccer mad house, at a time when it seems the whole of Ireland was soccer mad. I can remember as a small boy wearing the tape thin on a video cassette we had of the Italia ’90 world cup. I must have watched Packie Bonner’s save in the penalty shoot-out with Romania one hundred times. All I wanted, like so many boys, was to be a professional footballer when I grew up. The realities of my condition (and my frankly awful left foot) meant this would always remain a dream for me.

But limited though my chances of becoming the next Denis Irwin or Roy Keane were, the life I have been able to live with my condition has been anything but. Like so many others who have been lucky enough to pass through the doors of Crumlin, to have had the guidance of Desmond Duff, and the support of a network like Heart Children Ireland, my life has been as rich and fulfilling as anyone could hope for their child, ill or otherwise. While I couldn’t play team sports competitively, this allowed me to develop my other great passion: reading.

My parents, my whole family indeed, indulged my desire for reading and I became an avid library user as a youngster, was bought books by all and sundry in my family. As my interest in history developed, my mother, on our trips to Dublin for my annual check-up would bring me to visit Trinity and its wonderful long room, to Dublinia – the Viking Experience to learn about Ireland’s ancient heritage, and to our beautiful National Museums. Memories of these first encounters with history as a living thing to be experienced are tied to my memories of trips to Crumlin.

My deep love of reading, and eventually writing, would set me on my current path, though I hardly knew it at the time. I inhaled history, literature and poetry wherever and whenever I could in any form. As I grew into a moody, and undoubtedly occasionally difficult teenager, reading, and my family, remained my rock. As a relatively shy teenager, my heart condition loomed large over those years of awkward development. Nonetheless, it was in those years that I determined that it would not be the defining characteristic of my personality, nor of my life. I never particularly tried to hide the facts of my condition to my friends, who were all hugely supportive of the differences this meant when I might get tired walking too long or could not indulge in the same way in much of the experimentation that make being a teenager what it is. As many a teenager does, I began writing poetry. Most of it was awful. But with time, I became better and started to publish poems in magazines, and would later publish chapbooks and even a collection when I was 24.

It seemed to me in those years that either I could own my illness, and find where it belonged as part of who I was, or it would end up owning me in some way: it would become a kind of border of my own possibilities, it would ringfence what I thought I could achieve myself. Now, as I look back on those years, that process, I realise was vital. By willing myself to not be defined by my illness I was more comfortable with it, and more in control of living with it. As such, it meant I was more in control of what my life could be.

After the nightmare that was (as it is for most!) the Leaving Certificate in 2006, I moved out of home to study Arts in University College, Cork. I studied English and History, a dream come true, for three years while also making the transition from Crumlin to the Mater. This was a big a change for me as any moving out of home, learning how to cook, and balancing my life with my studies.

When I finished my degree, I was offered the chance to do a PhD in history and took it. I remained in Cork for another four years and did my PhD in a wonderful environment where I made many life-long friends. I got some work lecturing at UCC part-time, before getting a job in online learning there, and then I secured a contract to publish my PhD as a book. Since I was first captivated by the world of words, I had dreamed of writing a history book one day. Then, at the age of 26, I had done it. It was an extraordinary experience. The book was published last June, just two months after I moved to Prague. I came home for two or three days to launch it.

While I didn’t say so in my speech on the evening of the launch, I couldn’t help but think of all that happened to bring me to that point. And I knew that it was a secret history that brought me there. A blend of my personal history, my family history, my local and my national history. But also my medical history.

That evening I thought not just of the hours in the archives, but the hours in the hospital that my mother spent worrying about me, and every hour ever since spent the same way. The photographs of me in intensive care, a muddle of skin and tubes. The agony it must have been for my parents. I thought of the efforts, the skill and knowledge of the surgeons, doctors and nurses I have known throughout my life. Though it went unsaid that evening, it is those things I think of most when I look at my book on the shelves in my apartment.

In most countries, it is common to wish good health to someone when you share a drink with them and raise a toast. Here in my new home, they shout na zdraví (to your health)! In my future home, they say skål! And at home in Ireland, we say sláinte. So whether it’s to be na zdraví, skål, or sláinte, I will always be grateful to all those who helped me make the most of my opportunities. I am lucky indeed to be able to write my own history.

For more information about congenital heart disease and Heart Children Ireland, I would encourage you to visit www.heartchildren.ie.

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