Wednesday, March 8, 2017

An Opportunity Nearly Missed

I almost didn't attend this year. I almost decided to stay home and to not subject myself to the triggering environment that is Washington, DC. I almost chose to let the world of partisan politics, alternative facts, and fake news keep me from attending what has become a (nearly) annual event for me. But I ultimately decided that my health—and the health of so many fellow CHD warriors—was too important to voluntarily skip this year's Congenital Heart Legislative Conference.

Speaking during the
keynote presentation
2017 marked the fifth year that I attended this important event and the second time I had the honor of speaking as part of the keynote presentation. When I first walked into the conference room and saw more than 180 advocates from across the nation in attendance, all of the negative vibes that I felt about our nation's capital went away—at least temporarily. And I was grateful that I didn't pass on this year's event. As in years past, the energy, excitement, and commitment in that room were palpable. With an impressive mix of both seasoned and new advocates in attendance, it once again provided opportunities for connection, collaboration, compassion, and camaraderie that are often difficult to come by in today's world, let alone in the nation's capital.

During the time that I lived in Washington, DC, I sang in the Gay Men's Chorus of Washington. Dr. Thea Kano, our artistic director, had a saying that she would frequently share with us just before we were about to perform a concert: "Never miss the opportunity to make an impact because someone needs to hear you. They may not even realize it. And that person may be standing on the riser right next to you." It was always a powerful reminder for us to share our gift of music openly, confidently, and without fear. It was a reminder that we had something beautiful to give to those who came to hear us.

I found myself thinking about this quote frequently during this year's Legislative Conference and recognizing its applicability to what we were doing. Even though we were not sharing the gift of music, we were sharing something equally (if not even more) personal: our own health stories and journeys. And from what I saw and heard from those in attendance, whether newbies or veterans, it was intensely personal and profound.

CHD advocates from Illinois in
Senator Richard Durbin's office
 As I sit in my apartment writing this blog post one week after the event in DC, Republican "leaders" in Congress are currently working to "repeal and replace" the Affordable Care Act. While I don't want to go down that rabbit hole here, I openly admit that I am scared about the future of healthcare in the United States. I recently started a new job with a small organization. Upon submitting my application for health insurance, my boss and I learned that the monthly premium (for a fairly mediocre plan) would go up 40% thanks to my preexisting condition. After reviewing my options on the health plan marketplace, I discovered that I could actually get a better plan there for less money. So I opted for that route.

With the future of healthcare so uncertain at this point (and the fact that I don't have an employer-sponsored insurance plan), I am faced with the very real possibility that I may be screwed in the not-too-distance future. I sincerely hope that at this time next year I can still afford to get sick. I hope that, even if only in a small way, our voices were truly heard on Capitol Hill last week. And while I know that our opportunity to make an impact was not missed, I genuinely hope that it was not unheard by those who needed to hear us.