The Grown Up Congenital Heart Patients Association has just published a little book of stories from people with congenital heart defects, called Open Hearts. If anyone has followed me to WordPress from my old blog you might be able to remember me talking about trying to write my story for this book. I eventually finished it and it’s in the book. It’s weird reading it again now, as it was written over two years ago, long before I even knew that I was going to have my recent operation. When I looked back at my blog entry about the story I saw that I’d written that “I don’t often talk about my heart”, which is not really true at all now – sometimes it feels like it’s all I’ve been talking about for the past few months, both on this blog and in real life!
I bought myself a copy of Open Hearts and read through a few of the stories last night. I cried so much I had to stop reading. (I also didn’t used to talk about my emotions very much, or indeed be so emotional – what has happened to me?) I think I was expecting all the stories to have happy endings and, of course, some of them didn’t. Even if they had happy endings the struggles and sufferings of my fellow people with congenital heart defects (I don’t like the term GUCH) were all too present throughout the stories.
Some of my tears came from sympathy, some from empathy and some, I think, from relief in the knowledge that other people feel the same as me.
Reading some of the stories made me face up to the fact that having a heart defect, even one that’s just been nicely re-repaired, is a serious and potentially life-threatening thing. Although I (obviously) do realise this – I’m not that stupid – I tend to live in hope that everything will be alright in the end, that I’m going to get the long lifetime I wish for and be able to do most of the things I want to do in my life, but this just isn’t the case for many people with congenital heart defects. It may not always be the case for me. Perhaps some of my tears came from me recognising this. I’m quite good at self-pity, I’m afraid.
Reading the book reminded me again that I take a lot of things for granted, when I should see everything as being precious. I wish this wasn’t easier said than done.