Sharlie on Endurance and Overcoming Limitations

I was recently asked if I knew of anyone who would be interested in speaking at The Hammer Festival, an endurance sports gala in San Diego. I immediately thought of my sister, Sharlie. 

Her story is one of struggle, tenacity and of overcoming challenges. While we, as endurance athletes are able to choose our challenges, Sharlie, who was born with Cystic Fibrosis, had her struggle forced upon her. And, even though our struggles and obstacles are different, Sharlie and I, and everyone who participates in endurance sports, share that universal joy and sense of accomplishment as we cross our own finish lines after months of training and preparation. 

Sharlie's attitude and the way that she handles every challenge has inspired me and keeps me motivated every day. She motivates me to overcome my own comparatively small challenges, to keep training, and to keep pushing my own perceived limits. 

The speech she gave on Friday night really touched me, and I have included it below. I hope you enjoy it. 

Me and Sharlie after the Lost Boys 50 Miler

Nine months ago I was surrounded by my family and my dearest friends, while I sat on a gurney waiting to be wheeled into the operating room at Stanford Hospital. I had been on a waiting list for five months and the call had finally come, I was going to get new lungs and a new heart.

I was born with Cystic Fibrosis, which is a terminal, genetic, lung disease that causes life threatening infections and permanent lung damage. Over the years my lung function had deteriorated to a dangerously low percentage. I needed a double lung and heart transplant to survive.

The first time I realized I was different than other kids, I was doing something that many of you love to do (or you don’t love it but you do it anyway!) I was running. My first grade class was at PE and we were running around the track. I was having a hard time keeping up with my friends, but was determined not to fall behind, so I pushed myself to go harder and run faster. The next thing I knew, I was lying on the floor in my classroom with my legs up on a chair and my worried mother looking over me. I had fainted on the track. My lungs could not keep up and my body couldn't get enough oxygen. That was when my mom explained to me that I had Cystic Fibrosis a little bit about what that meant. She told me to be careful and listen to my body so I wouldn't hurt myself. And, of course she said that this meant I was extra special!

I’m not sure if it is because of that specific experience, or just because I have been so physically limited throughout my life, that I've always yearned to be an athlete. Not necessarily a professional athlete but I just wanted to be able to use my body and feel a freedom I had never felt before. Don’t get me wrong, I was not a couch potato. I did what I could to strengthen my body. I found low impact exercises I could do and fell in love with yoga. I would turn up my oxygen all the way and walk on the treadmill but didn't know if I was doing more harm than good as my head pounded, my fingers turned blue, and I ferociously sucked in air. Leading up to my transplant, it was difficult to even talk, let alone exercise.

When my brother started running and started writing about his experiences on his blog, I was incredibly inspired. I devoured every blog post and would visualize myself running the trails with him as I read. I clearly remember giving him one last hug before the surgical nurses came to prep me for my transplant. I knew in reality I could be saying goodbye for the last time but I was filled with hope and truly believed I would experience a miracle. As I gave Dax a final squeeze, I whispered to him, “I love you, I’ll see you on the trails.”

A month ago that dream was fulfilled. Dax asked me to run the Lake Hodges 5K trail run with him. It was super hard. After months in the hospital, my muscles had completely atrophied and I am still getting used to being able to take a deep breath and use my body. I was unsure of myself but as I ran alongside my brother and my husband, two of my heroes, I thought about where I had come from and how the experiences I had dreamed of having and had visualized when the journey seemed hopeless were actually happening. I also thought about my donor, someone who had decided that if anything should ever happen to them, they wanted to give the gift of life to someone else. Such a selfless gift. It was an amazing race and I was so overcome with gratitude and joy. I can tell you, it’s harder to run when you’re crying! They were happy tears. Even though I was one of the last to finish, Paul Jesse, the race organizer surprised me at the award ceremony with such kind, encouraging words and a very generous gift card to get some new running gear and a subscription to Trail Runner. It felt like I won first place!

Sharlie finishing the Lake Hodges 5K

I am so grateful to be here tonight. I am so inspired by this community of endurance athletes. Living with Cystic Fibrosis has given me a unique perspective. I do not take life or even one breath for granted. I have faced death many times and know how blessed I am to be here. I think athletes share this unique perspective. You push and thrive and dream and conquer, you are grateful and most importantly, you give back. When I was first accepted for Transplant, the first thing they told me to do was start fundraising. They said my medical costs could reach up to a million dollars. Dax set up a fundraising page for me and reached out to this community and we were incredibly humbled by the generous support we received from so many of you. I have come to learn that that is just who you are and what you do. I am so grateful the funds raised tonight will go to the CF Foundation and will be used to find a cure for this relentless disease.

As a beginner athlete, I’m most likely never going to be at the elite level that you all are. However, living with 15% lung function and surviving and recovering from a double lung, heart transplant has taught me a little bit about endurance and now instead of spending hours a day on my bed doing breathing treatments, respiratory therapy and running I.V.s, I am trying to follow in your footsteps. I know you also know about endurance, I know you have all experienced the feeling of thinking you cannot take one more step or pedal one more time or swim one more stroke but you dug deep and you did. That is what endurance is and I have learned it is the most painful and sweetest experience at the same time. Thank you for inspiring me. I am learning how good it feels to drip sweat, and how delicious sore muscles feel. I promise to continue to push myself and honor these new organs of mine. I also promise to follow your lead and give back. I have a lot to pay forward! On behalf of the CF community I thank you for your generosity tonight. It means the world to us. We have a saying that we hope one day CF will stand for CURE FOUND!! Thank you for helping us get closer to realizing that dream! God Bless.

To become an organ donor, please visit www.organdonor.gov.
To learn more about Cystic Fibrosis and become involved, please visit www.cff.org.