1/15/2014 3:37 PM
By Paul Willgoss
This is a Facebook status I see a fair amount... and I’m never sure about it.
I understand how people need to hate CHD, need to feel the anger that only hate can bring to put CHD in its place. And that, I think, is the key, that CHD is almost a person—it's visceral, it does things to people, and it can be hated.
Yes, there are times I hate the way CHD impacts my friends, cutting their health and lives short. Yes, I scream at the night sky in rage as another friend dies.
But do I hate CHD?
How can I hate something that is part of me, more so than the colour of my hair, about the same as the colour of my eyes?
How can I hate something that has meant I have met, liked and loved some of the best people on the planet?
That doesn’t mean I’m some sort of hippy who “loves” my CHD. I get angry with it for the effect it has on my friends, I get frustrated with its effects on me, and I despair of its continual toll of young lives. I worry about those with it, and I instinctively try and care for those affected.
So what is CHD to me? Neither loved nor hated, sometimes feared, but responsible for so much love in my life. It defines part of me, and provides me with a purpose to help through raising awareness, helping the Children’s Heart Federation as a trustee, or just by being there.
It gets very complicated if I start wishing my friends didn’t have CHD, as then they wouldn’t in all likelihood be my friends. Yes, I wish that they didn’t have the complications, the surgery, the pain, the problems with implantable gizmos and everything else. However, I’m selfish and I want them as friends.
So, to go back to Facebook, perhaps my feelings about CHD are best summed up as:
Relationship Status – It’s Complicated
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.
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