Last week I travelled up to London to meet the Volunteer Co-ordinator of The Somerville Foundation.
The Somerville Foundation used to be called GUCH (Grown Up Congenital Heart). It was set up because it was found that more and more children who had Congenital Heart Defects were surviving into adult hood. So the foundation was set up so that ‘GUCHies’ like me had somewhere to get information from, to meet others who had a CHD, to go to for support and to campaign for rights for those with CHD.
I was introduced to the then GUCH by my cardiologist. She thought it would be a good thing for me to contact, to find out more about my CHD and just have a look.
The only other experience I had of this sort of thing was after my last op in 1985. I vaguely remember a man from what was known as the ‘Norfolk Zipper Club’, who came round offering support and such like. I was so out of it (unbeknown then I hadn’t been given enough blood during the operation and was very drowsy and in serious need of a blood transfusion which I got a few days later). I hardly remember him at all, except to help with the post op pain I had, him telling me to breathe using my stomach and not my chest, something I do to this day, which has had its pros and cons.
Anyway I went to a few Zipper Club meetings after I came out of hospital, full of old people (I was only 16 remember) and a bit boring. I had a lovely lady called Daphne call me a few times after I was discharged to make sure I was ok, offering support and if I needed a chat, but she sounded ancient and I reverted to my polite ways when the adults were around of “yes I’m very well thank you, no nothing is bothering me, thank you for calling” etc, etc.
So this GUCH thing I was expecting much the same… I went along, I met some people, it was pleasant but I didn’t feel part of it. I admitted to the volunteer co-ordinator that I met last week, that really my experiences of these GUCH gatherings, were that, yes they were informative but usually I would meet people who would first ask you your name and then secondly ask you what your condition was. Which kind of really grated on me and if I’m honest, it still does. She found my honesty refreshing, which is always nice, and do you know what, we spent a good few hours together and I have no idea what her CHD is at all!
So, you may ask after the above whinge about the place why did I arrange to go to their offices and meet the volunteer coordinator?
I have volunteered for them. I can’t tell you in what capacity I am volunteering as I need to keep a low profile and my identity private. But I am volunteering as I feel a need to help to say thank you for the funding I received from them for my Dance Therapy Course which I took earlier this year, to give something back and also because the more I can expose myself to others with whatever CHD they have the more I can understand about the condition(s) and ultimately understand myself.
It s a bit like a bringing it all back home, a full circle, the label of CHD, the definition of having a dodgy heart that I’ve been fighting against for so long. The slight contempt I had for these types of organisations is slowly being assuaged. The funny thing is, thinking about the type of people I may be working with guess I sound like the ancient one now…….
You can find out more about the Somerville Foundation here: