What’s Our “Why”? by Rachel Sexton

I will never forget sitting in an Italian restaurant for dinner, surrounded by multiple myeloma survivors, as we prepared to launch a patient-to-patient speaker program in that area. Our team had been researching this rare blood cancer for weeks in preparation for this meeting, so when the gentleman next to me said, “I haven’t had one bad day since my autologous stem cell transplant,” I was stunned. Everything I had learned about the process described the “first 100 days” after transplant as being an often grueling and critical period. In an incredulous voice, I replied, “Really? You didn’t have any challenges during the first 100 days?” He immediately replied, “Oh, sure – some days have been much better than others, but any day I’m alive can’t be a bad day.”

It’s been more than 5 years, but I can still smell the marinara sauce and recall every detail of that conversation when someone asks me ‘why’ I chose this career. That inspiring perspective is something we see across all our peer programs – from diabetes to rare disease – and it’s what motivates every member of the VPR POP team in everything we do. Training Specialist Jordan Sexton sums it up when he says, “I consider working closely with people who have chosen to respond to some of the most difficult aspects of their lives by sharing their experiences, to be a genuine privilege. The courage and dedication they show in helping others inspires me daily, and I feel fortunate I am able to help them share their knowledge with those who are in need of it most.”

For some of our team, pursuing a role in patient-to-patient education was personal. Director of Program Coordination, Traci Rogers, shares, “I was drawn to peer mentoring because of my Aunt Rosalie. Rosalie took a prominent role in my life following the death of my mother when I was 8. Rosalie was diagnosed with diabetes in a small town that followed the antiquated approach to ‘just take a pill and avoid sugar’. Insulin was a punishment for not losing weight or eating differently. Had she had access to a program like those we have created for diabetes, she might have better understood the importance of blood sugar control and that insulin may have helped her avoid complications.”

The seed for Training Specialist Victoria Gunbatar’s ‘why’ was planted more than 15-years ago and half a world away. “In 2003, I volunteered at a Chinese orphanage where I met a frail little girl who stole my heart and jumpstarted my adoption journey. I relentlessly raised money for her medical care and soon learned she had been diagnosed with Moyamoya disease as well as tuberculosis in her brain. I tracked down the world’s leading expert on Moyamoya at Harvard University, who told me not only is Moyamoya rare but, in combination with cerebral TB, it is virtually unheard of in the Western world. Worse yet, he said that, had she been diagnosed and treated earlier, she would likely have had a more positive prognosis. I have never forgotten “Celina” and how getting the right information in the right hands at the right time can forever alter one’s path in this life. I am now very thankful that I get to help tell the stories of people who know first-hand the tremendous impact of patient empowerment.”

From sharing a platter of pasta in Kansas City to bonding with a baby in Asia, the ways we have been touched by patients is as diverse and unique as the patients themselves. Not only have those moments left a permanent imprint on us, they are also what keep us going. Each time we schedule one of the 4,000+ patient-to-patient programs we host each year, it is with the knowledge that for a woman struggling with a cancer diagnosis in Omaha or the parent of a child looking for rare disease resources in Orlando, this program might be their ‘why’…the message that changes their perspective or puts them on a better path. And to paraphrase the words of a wise man, any day that you have the opportunity to be a part of a change like that can’t be a bad day.

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