Fighting the Good Fight

There is a time for everything, and a season for every activity under the heavens. ~Ecclesiastes 3:1

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Si Dios quiere (God willing). Con el favor de Dios (With God’s support). I think those were my mom’s two favorite phrases. She used them all the time. 

Me: “Mom, I don’t know how to say this. I was academically disqualified from San Jose State. I flunked out.”

Mom: “Don’t worry, mijo. You’ll figure things out con el favor de Dios. I know that you’ll get back in school and graduate, Si Dios quiere.” 

That’s not exactly how that conversation went, but you get the picture. Yeah, Mom was fluent in Spanglish. Regardless of what language she spoke, God was always in the conversation. She truly believed that everything happened for a reason. And, of course, God was making it all happen. The funny thing is that’s how it played out. I’m grateful that she was still alive to see me get married, start a family, graduate from college, and start a career.

Her worldview was, “Why worry about something you can’t control?” She was an easygoing woman of faith. Unfortunately, I didn’t get that quality from her. I always struggled when life’s storms shook things up. The darkest time in my life was immediately after the heart transplant in 2020. I know. It doesn’t make sense. I just got another shot at life. But, I’m not alone. According to Stanford University, “up to 63% of heart recipients develop anxiety and/or depression during the first post-transplant year.” 

My mind convinced me that I was useless and worthless. I could no longer provide for my family like I used to. My attempts to return to the community work I loved so much fell on deaf ears. It seemed like there wasn’t a place for me anymore. While Sandra and the girls steadfastly cheered me on and showered me with love and support, my distorted reasoning continued to remind me that I had nothing to offer them either.

My growing faith helped me understand that everything was in God’s hands and therapy restored my confidence that I still had value to my family and community. I had come to accept that a lucrative career was no longer viable and opportunities to share my community leadership skills were limited. While giving up isn’t in my DNA, I slowly began to realize that chasing windmills was fruitless and potentially harmful, as my health crisis so clearly demonstrated.

By mid-June 2023, things were looking up. I was working with the Latino Leadership Alliance (LLA) Academy training emerging civic leaders and working with high school students at The Foundation for Hispanic Education (TFHE) again. One day that summer, I was walking out of the dentist’s office when the caller ID on my cell phone displayed a number from a strange area code. It’s not my practice to answer calls from unknown sources. For some reason, I answered it.

“Hi Eddie, my name is Scott Leezer from the Honor the Gift Coalition.” Scott went on to describe his organization and explain how Medicare decided to no longer cover a critical blood test for transplant recipients. He heard that I benefited from the innovative test and asked if I was interested in going to Washington, D.C. to share my story with lawmakers. I was skeptical and asked a bunch of questions. A week later, I was on Capitol Hill. 

For three years, I worried about what would become of my post-transplant life. Sandra, who has the same strong faith as Mom, encouraged me to just go with it. God will reveal His plan for me in his time, she assured me. Within the span of a few months, LLA, TFHE, and a stranger named Scott Leezer came calling. God knew I was ready physically and mentally to re-engage with the world. There is a time for everything, and a season for every activity under the heavens.

I consciously approached these activities not with the same vigor, ambition, and urgency that I conducted my life before a massive heart attack changed everything. I proceeded with patience, gratitude, compassion, and humility. The day on Capitol Hill was special (see Honoring My Gift on ESEReport.com) and led to a second trip to Washington, D.C. in August 2023 with a larger group of fellow transplant warriors. We were fighting the good fight for a good cause.

The Honor the Gift Coalition is an alliance of 17 transplant support organizations. The campaign to restore Medicare coverage for the post-transplant blood test  caught the attention of influential leaders. Sen. Alex Padilla (D-CA), Rep. Anna Eshoo (D-CA), and Rep. Michael Burgess (R-TX) led a bipartisan group of lawmakers asking Medicare to justify its decision. Civil rights icon Rev. Al Sharpton, former Speaker of the House Newt Gingrich (R-GA), and legendary soul singer Al B. Sure! and his Health Equity in Transplantation Coalition joined the fight!

With the support of CURA Strategies, a Washinngton, D.C.-based public relations firm, the coalition led a group of over 140 transplant patients and caregivers on a march and rally in front of the Hubert H. Humphrey Building (home to the Human and Health Services Department) demanding that Medicare reverse its decision. I had the honor of representing transplant patients at a press conference held in the Canon House Building later that day.

In December 2023, Scott Leezer called again with another intriguing request. “Eddie, I bet I’m going to ask you a question that you probably never thought anyone would ever ask,” he started. Former Speaker Gingrich was looking for a patient voice to be a guest on his Newt’s World podcast. Would I be interested in sharing my story? Gingrich’s brand of right-wing Republican politics represents everything I believe is wrong with our country. After a long pause, I responded, “of course, for the cause.” Gingrich was gracious and a champion on the issue.

I went into the holidays feeling grateful for Sandra and the girls, friends and family, and for having the opportunity to do something meaningful in my life. The holidays were nice and uneventful. I didn’t give much thought to the whirlwind year of community service. I was invited back to work with LLA and TFHE in spring 2024. It seemed like my volunteer work in Washington, D.C. was done. Change in Washington is so slow. The professionals would carry the torch going forward.

Nine months later, I was back in Washington. This time it was to celebrate the Honor the Gift Coalition and the Health Equity in Transplantation Coalition’s successful campaign to overturn Medicare’s decision to stop covering the blood test. In an almost unprecedented move, Medicare changed its position on coverage. I stood alongside Rev. Al Sharpton, Al B. Sure!, and others to share my story yet once again.

The next morning, I took a walk around the White House before heading to the airport to catch a flight home. I reflected on so much. First and foremost, I made a commitment to follow Sandra and Mom’s advice to trust God’s plan and just go with it. Playing a small part in the Honor the Gift campaign was an experience of a lifetime. I met people from all over the country and opened my heart to make new friends. 

Walking by statues and  marveling at the majesty of the White House reminded me that we still live in a thriving democracy despite the political circus that threatens our existence. People do matter. We started this campaign with four people walking the marble halls of the Capitol trying to raise awareness about a wrong. The media and influential people joined the movement. The support grew exponentially until Medicare had no choice but to take notice. 

Even though a wrong was righted this time, these kinds of things are never truly over, especially during these politically uncertain times. The Washington, D.C. professionals will keep an eye on it. Thousands of new transplant recipients will benefit from the work. If ever called upon again to help, I’ll trust that God initiated the call. If my work on this issue is done, I’ll continue to live with faith, hope, and love, and stay in touch with friends new and old. 

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