The Calm and the Storm
6/3/2014 10:12 AM
By Kim Edgren
Oftentimes my blog rotation comes up and I wonder, what the heck am I going to write about? This usually happens when there is a cardiac “calm” for me. I am sure many of you can relate. It is that time when things are going well. It’s the time you aren’t always thinking – or obsessing – about your health. During the “storm” – the symptom, the crises, the worry – there are more emotions to flow, to share, and to tell.
This got me thinking about our community. As we all know, we are underfunded and underrepresented when it comes to “causes.” We need to be heard, and funded, to keep the research and advocacy going for all of us, young and old. If we only wait for the storm to share our stories, then we will always be underfunded and underrepresented. For so many of us we have more time, more energy – and frankly, more to prove – in the calm.
A question: How many of you have experienced the “But you look so healthy!” exclamation when you tell someone you have CHD? Often followed by, “What is a congenital heart defect?” We need to use those moments to educate on why we can look “healthy” and still need specialized lifelong care and research – that we have been fighting since birth and will have to continue to fight for our future. We must give voice to the hard work to “look healthy” and not wait for the audience when we are at our most fragile.
All of that only happens when you and I tell our stories – even the mundane-sounding ones that include having a job, raising a child, walking the track – because without research and specialists we would not have even the mundane, calm moments to share. Find your voice and tell all of your tales. ACHA has many opportunities but look around your own communities and see how you can raise awareness, too. One story can change someone’s mindset, and we can do it one story at a time.
Kim Edgren was born in 1966 with transposition of the great arteries, pulmonary stenosis and ventricular septal defect. She recently became the proud owner of a Melody valve! When she is not trying her hand at writing she is busy spending time with her partner and three girls, managing her two child care centers and planning her next vacation.