8/16/2012 8:11 AM
By Paul Willgoss
Two captains stand, as their players surround them in a circle, arms linked as the captains talk of friendship, love and those not here.
Two teams, who between them have kept the finest cardiologists of Europe (and beyond) busy for many, many years.
The players, stripped to their shorts and t-shirts. The cheerleaders, dressed up, clutching banners, singing the songs dreamt up in the last couple of days.
The rules, well, they won’t appear in any book, as they are written in our hearts. You play until you need to stop, then someone else comes on. If you need a break, you take a break. No one says you should play, no one questions if you don’t.
The traditions—well, tradition—has to be upheld: A captain will wear a skirt (that’ll be me!), there will be a lot of hugging, and to be honest, the score doesn’t really matter.
We’re not the entire world, and apologies to the Olympics, but from the Atlantic coast to the Russian steppe and from the Arctic North to the Mediterranean (with support from Australia and New Zealand), we come together every two years to learn and share with each other our experiences of living with and supporting other adults with congenital heart defects.
This is the one game of soccer that lives up to the words of a great manager from a ways back: “Some people think football is a matter of life and death. I assure you, it's much more serious than that.”
You have teams that really do read like an ambitious cardiologist’s dream: a couple of Fallots, a CoA or two, ASDs, VSDs, TGAs, and Fontans—not one but three on the pitch, one leading the charge with verve and swift feet. The cheerleaders singing proudly, waving insanely, cheering every tackle, every save and matching us players condition for condition.
Although it’s a “competitive” match and bragging rights are acquired, the real point of the match is the shared start, the simple fact that we’re having fun, and for some it’s the first time on a pitch, kicking the ball and enjoying sport.
The Eurohearts Conferences, where this game happens, are more than just the game of football. The week is spent learning from cardiologists, nurses, and specialists in numerous fields both about how our conditions can be managed but how we can organise and support ourselves. The poster presentations covering our organisations have been a case study in organisational development, from the small acorns of a decade and more ago through to the many growing self-confident oak trees of organisations of now.
For most of us the conference is over. More than 50 of us have returned to our lives, and some will be writing reports for our organisations and articles for our newsletters. The 2014 organisers will be working on delivering another conference, and a small working group (including me) will be taking forward some of the bigger issues about our organisations working together.
Living with congenital heart disease isn’t always a bowl of cherries—we know that, the circle of linked arms represents that and represents our shared understanding of many things that are often left unsaid.
So if the captains voices broke a little, and a tear appeared in the corner of many an eye then, that is alright because we were, for a little while, together, as one.
Marathon runner, GUCH (Grown Up with Congenital Heart Disease), long-distance hiker, charity trustee, patient advocate and whisky lover—Paul Willgoss is all of these and more. A member of the Most Honourable Order of the British Empire, his efforts both in front and behind the scenes for those with congenital heart defects have been recognized at the highest levels in his native U.K.