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Going Public

Sep 28

Posted by: ACHA
9/28/2011 9:52 AM  RssIcon

By Amy Verstappen
ACHA President/CEO

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.

Amy Verstappen is the President/CEO of ACHA. For more about Amy, click here.

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6 comment(s) so far...


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Re: Going Public

Amy,
This is a wonderful blog! I am sure that you did a great job! I thank you for everything that you do. I am having somewhat of a similar problem. I have to speak at our congenital heart walk next weekend. While I am terrified to speak at all, to tell our story in front of so many is really scary. I was going to ask you to come do it!!! All joking aside, it is very hard to speak so personally without crying. But I guess if we could talk about all the issues that CHD survivors face without choking up, there would be something wrong with our hearts!
Thanks, Amy. You do a fabulous job.
Lisa

By lisa otto on   9/28/2011 11:02 AM
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Re: Going Public

Thank you Amy! I echo Lisa's sentiments. Your post and comments are very well written/spoken. It's good to know we have someone like you who speaks for all of us living with CHD.

By Stephie on   9/28/2011 11:49 AM
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Re: Going Public

Thank you for this article! I really love the blog section of the ACHA website. Although I'm not an adult with CHD, my daughter has tricuspid atresia and I try to get as much info. as I can. I feel like she has a bright future when I read the blogs of all of these articulate, funny, largely healthy, adults with CHD. I read the speech that you linked in your article and it was very compelling. I just became aware of the ACHA this year and we did our first ACHA walk in Cleveland in September, and it definitely won't be our last. Thank you for all you do!

By Anne Curwen on   10/12/2011 1:00 PM
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Re: Going Public

Dear Amy,

I have read your article and believe me it was like a remedy to my heart.
You will always be a simple, not only for me but I believe for all CHD patients worldwide.

As I like to say... LET'S KEEP IT TICKING!

By Katerina Papadopoulos on   1/22/2012 8:50 AM
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Re: Going Public

Hi Amy, not sure if you remember me? Its been a while since I e-mailed you. I had the 5 open hearts with Pulmonic Stenosis. Just a quick update: I'm doing fabulous, I am working 2 jobs & one of them is being a NYS Certified EMT & loving the job. I will forward a pic to you soon of my partner & I on the job. Hope your ding well, you are doing an amazing job with ACHD, I get all the e-mails & enjoy the website. Keep up the good work. Talk to ya soon......JP.

By Joe Phelps on   7/5/2012 8:03 AM
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Re: Going Public

Hey Joe et al,
Great to see so many responses to this blog!
Joe, so glad to hear you are doing well! Thanks to you (and everyone else) for the kind words - this blog, and all ACHA communications efforts, owes its existence to Terri Schaefer, ACHA's FABULOUS communications manager. All of ACHA's successes rest on all of ACHA's amazing staff - Tim, Jessica, Terri, Bridget, Christine, Jen, Ruth, Paula, Ann, and Amy B, each working theoir hardest every day to help CHD patients thrive their whole lives. I am VERY lucky to have them. And of course all of our members who get out and speak up about CHD. Right now ACHA is setting up summer visits for CHD patients and their families to go see their lawmakers while they are "at home" from DC - hope you can join me in telling them about life "as-is" with CHD.
Best,
Amy

By Amy Verstappen on   7/5/2012 8:37 AM

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