By Amy Verstappen
28 Sep

Going Public

Wednesday, September 28, 2011

Last week, I gave one of the toughest speeches I have ever given in my life. What made it so tough was not that it was to a room full of Congressional staffers, although that certainly didn’t help. Nor was the biggest challenge the fact that there might be press there, or that I would be sharing the podium with some of the smartest people on the planet when it comes to congenital heart disease.

What made it so tough was that I was actually going to have to get up and talk personally about my own journey with CHD. Two days before the briefing, I discovered that my original small role as Q and A moderator had been expanded, and I had eight minutes to talk personally about living with CHD.

Now, given the fact that I give at least three ACHA speeches a month, you might think that this would come easy for me. But the fact is that my job is not to talk about myself and my individual journey. When I talk, apart from referencing the fact that I am a congenital heart survivor, I rarely share details of my own story. Instead, I talk about the big picture, and the challenges that collectively face our members.

One of my key points is always the wide range of congenital heart experiences, and the fact that there is no one story that can capture what it means to live with heart defects. I reference the latest ACHD research, and the latest trends in health policy and medicine. I try to speak for the congenital heart community, in the language that medical and policy professionals understand and speak every day.

But now I had to do something different—to be the “face” of the disease, and give the attending staffers a concrete understanding of my particular health challenges. The thought made me sick.

How could I put myself out there as an example, when I know so many people with CHD face much worse challenges than I do? How was I going to compress a lifetime of challenges into just a few minutes? How was I going to do this and not cry? When I shared my worries with our Advocacy Coordinator, Amy Basken, she grinned at me. “Welcome to Advocacy 101,” she said.

So I did it—I got up there and talked about my heart failure and my mini strokes, my pacemaker and my Coumadin. I talked about how lucky I am, and how I watch too many of our members become disabled and die from CHD. And then I asked them to help make all these problems better by funding the Congenital Heart Futures Act, and allowing the Centers for Disease Control and Prevention to create new ways to gather information on CHD throughout the lifespan. You can read what I said here.

I hope I did you all justice, and I wish I could have had each one of you by my side, to tell your own story. Each of our stories, told to each of our lawmakers, is what has gotten us this far, and the only thing that will continue to move us forward.

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