Tuesday, March 6, 2018

Our Stories, Our Futures: Advocacy as a Lifelong Journey

2018 marks the sixth year that I attended the Congenital Heart Legislative Conference in Washington, DC. Nearly 200 advocates from across the country—the largest number to date—descended on the nation’s capital for this annual event. Given the current political climate, like last year, I initially approached this year’s event with some apprehension and skepticism.

Yet there’s something about this event that continues to inspire me year after year—the people who participate. I am fortunate to have built some close friendships with fellow advocates over the years; and seeing them is always such a joy. But equally rewarding is seeing all the new people who come to this event each year—whether they are fellow CHD patients (of all ages!), parents, spouses, siblings, or medical professionals.


I got to meet several inspiring people this year; but two of them resonate in particular—a mother and son from Illinois who came to advocate together. As a fellow tetralogy of Fallot (TOF) patient, Luke and I quickly bonded; but it was soon established that the nine-year-old is obviously the cooler of the two of us. (In the spirit of total transparency, however, that’s not a very high bar.) In our first meeting with Congressional staffers, Luke and his mom told his story; and I jokingly added that I am the older version of Luke. It was a spur-of-the-moment comment, but I heard later that it resonated with others in the meeting. Luke’s mom also shared with me that she was happy we met because I was an inspiration for her as a heart mom and a role model for Luke. (Melanie, the feeling is mutual, and your feedback is truly humbling. Thank you!)

Each person who attends the Legislative Conference has a story. Each one is unique, powerful, and intensely personal. Whether it’s a “success” story or one that ended too soon, none is more or less important than any other. Collectively these stories create a larger narrative for the greater CHD community—a community that is growing in numbers thanks to significant medical advances but one that, unfortunately, remains underfunded, underrepresented, and under cared for. (It’s estimated that fewer than 10% of adults with CHD in the United States receive proper medical care.)

As the number one birth defect in the United States, we’re now at a point where there are more adults than children living with CHD. While this is obviously good news, it also creates what I believe to be a growing and critical public health concern. In addition to lacking the proper surveillance data and research funding (the primary “asks” during our Hill visits), the CHD community faces a shortage of qualified cardiologists and established medical centers to care for the growing and aging CHD population. (Don’t get me wrong, progress is being made on all fronts. But we have a lot of catching up to do.)

While the pace of progress in DC can often be painfully slow, we were fortunate to witness the passage of the Congenital Heart Futures Reauthorization Act (CHFRA) in the House (H.R. 1222) on the eve of our Hill visits. It was a huge win and a critically important step on what is a very long journey. In a world that often looks for instant gratification, it is heartening to see the steadfast commitment of so many people who are committed to making progress—whatever the pace.

The saying goes that slow and steady wins the race, and I couldn’t be more hopeful that it’s true. But I also think we’re at a critical moment—one in which the entire CHD community needs to begin working even more closely together. We have accomplished many great things already, but I sincerely believe that a more unified approach will make our voices even stronger and increase the pace of our progress on all fronts. I firmly believe that we owe it not only to ourselves, but—more importantly—to Luke and to his peers to work more collaboratively toward achieving our shared vision of a better future for all who are living with CHD.

Saturday, February 17, 2018

Why? Because I Can!

I recently became hooked on Madam Secretary and may have spent a few evenings binge watching the show on Netflix. There's an episode in Season 2 in which the Secretary's chief of staff Nadine Tolliver (Bebe Neuwirth) and her assistant Blake Moran (Erich Bergen) head to a bar after an especially long and stressful day at the office. Just as the singer at the bar's open mic is wrapping up, Blake is feeling overwhelmed by the world crises facing the office they both work in; and Nadine does her best to talk him down and give him a bit of a pep talk:
Nadine: Now, get up there and sing.
Blake: Oof, why?
Nadine: Because you can.
Although the show is fictional, in today's political climate, it sometimes feels like our real world scenarios are equally overwhelming. And there are times when national or global situations make me feel just as helpless as Blake does sitting in that bar.

But life goes on.

I am sometimes asked why I do as much as I do in the CHD community (and elsewhere). Sure, there are times when I feel overwhelmed with the number of things I've put on my own plate, whether it's participating in advocacy, speaking at a walk, writing an assigned blog post, or fundraising for the cause. But without being too simplistic about it, I think Nadine hits the nail on the head. I do it because I can. Volunteering on behalf of the CHD community is something that I am obviously passionate about, and I am extremely fortunate that I have the ability to do it! Not everyone can, and that's not something I take lightly.

Yes, I've had some rough moments with my congenital heart defect, and I recognize that there may be more less-than-pleasant times ahead. I don't take that fact lightly, either. But I also don't let it stop me from doing what I can do now or from planning what I want to do tomorrow. And until I know that I actually can't do something, I'm going to keep doing and trying to do what I can. Perhaps my "why?" is just that simple.

To me, life is all about experiences. Whether it's trying a new restaurant, meeting interesting people, traveling to a new place, or testing my own limits, I want to experience what I can while I can—because I can!

What's your "why"?