From the Sidelines to the Finish Line

By Emily Falcon

I was born in 1982, in Boston, Massachusetts, USA. At seven weeks old, I had a heart attack that destroyed forty percent of the left side of my heart, and I was diagnosed with anomalous origin of the left coronary artery from the pulmonary artery (ALCAPA). ALCAPA occurs 0.25–0.5 percent of the time, with an overall prevalence rate of one out of every 300,000 births. This was my entry into a world of multiple cardiac procedures, surgeries, and hospitalisations. Balancing this serious condition defined my life. There were few studies or success stories of children
growing up with congenital heart disease (CHD) when I was younger. Now I hope to inspire young patients.

I have written a memoir that chronicles my lifelong journey with a congenital cardiac condition. From the Sidelines to the Finish Line: A Chronic Illness Survivor’s Challenges and Everyday Triumphs details how an eight-inch chest scar from my first open-heart surgery at age six, multiple daily medications, modified physical school activities, and frequent trips to doctors broadcast to the world that I was different. After years of being the odd one out, I attended a summer camp for children like me, survivors of open-heart surgery. For two weeks of the year, I
was a normal kid who didn’t have to worry about fitting in or hiding my limitations. At camp, when a child didn’t have a chest scar, the campers found it strange. I met my life-long best friend in a co-camper and we have supported each other throughout the years as co-heart warriors.

In 2017, at age thirty-five, after a lifetime of feeling that nothing could ever change, I had a second open-heart surgery and went from being unable to run more than a few yards to developing as an athlete who participated in my first athletic event, a 5K race, just eight months after open-heart surgery. I was no longer stuck on the sidelines. My new unrestricted life freed me to move away from the comfort of my medical team and family in Boston to Alaska, where physical challenges were part of everyday life. Whether hiking in Denali National Park, getting lost in the woods, or white-water rafting in freezing rapids, I found my endurance tested in ways it had never been previously.

Daphne Davis-Patrick, DNP, author, educator, and inspirational speaker, said, “Emily takes the reader into her tumultuous health journey, which placed her on the sidelines. It culminates in her ability to move from the sidelines into the path of active participation. I shed tears when she described her many experiences with failed cardioversions and ablations and could not begin to imagine the anxiety and frustration that she endured. I rejoice with her now that she can move from the sidelines to the finish line of almost everything. …”

Frank Jaworski, CRNA, father to an adult born with CHD, said, “It’s difficult to talk openly about one’s fears and self-conscious feelings. Emily lets us know exactly what she was feeling. She lets us inside the experience of living with chronic illness.”

Lauren Elizabeth, author and adult with CHD, said, “As a heart patient myself, I felt like I was gaining a friend while reading Emily’s book. She described the life and emotions of a heart warrior so well!”

My memoir is a story of survival and of how my physical situation shaped and limited me, as well as of how I was able to make modifications to allow me to do the things I dreamed of. I never surrendered, never wavered. I always forged onward. I intend this story to be a helpful resource to families, caregivers, and physicians who want to gain insight into a patient’s point of view. Drawing from my extensive life experiences, I recount how I found a way to surmount obstacles that people who live with incurable medical conditions and their supporters might face. In the book, I describe how I have remained courageous and pragmatic in my mission to stay alive. I encourage my readers to advocate for themselves, believe in their abilities, never be afraid to test their boundaries, and feel motivated to make changes in their lives.

The skills and knowledge of my medical team, endless support from my family, and my own dogged perseverance enabled me to live a life no one ever dreamed was possible. No one and nothing, least of all my body, is holding me back anymore. I want to fully explore my abilities after a lifetime of restrictions and live my motto to the fullest: “Don’t waste a second.” By sharing aspects of my journey, I hope my insights can inspire people who doubt their own resilience.

I love travel and animals, both of which have helped me get through difficult times. While living a constrained life, I have sought out adventures whenever I can, such as trekking up volcanoes to observe mountain gorillas in Uganda, volunteering with cheetahs and baboons in Namibia, playing with wolves at the Arctic Circle, and eating with orangutans in Singapore. I am now an athlete who participates in a weekly run club and runs in 5K races throughout the year. I hope to inspire others who have health limitations to never waste a moment and not let life pass them by.

The book is available in paperback, eBook, or audiobook format. The book launch date is the 7th November 2023, and it can be ordered through links on my website.