Friday FITspiration: Running Blind to Save Lives
Here at runladylike.com, Fridays are all about sharing the inspiring stories of fit people who motivate all of us to be better tomorrow than we were yesterday. My Friday FITspiration series profiles runners, triathletes and casual exercisers who are making choices every day to be as healthy as they can be – in both huge ways and through simple, small victories. Their stories are about the journey of transforming from ordinary to extraordinary each and every day.
As I start my Hood to Coast journey today, I can’t help but think about how we all have mountains to climb – in running and in life. The way we choose to tackle our personal mountains shows our true character, strength and guts. It’s often in the midst of the most challenging times and deepest struggles that we find out who we truly are.
Laura Edwards from Write the Happy Ending is one of those people who has chosen to turn her mountain into a life-changing opportunity. To show character. Strength. Guts. Laura is a professional writer and public relations pro who lives in North Carolina and married her high school sweetheart. On the surface, she seems just like the rest of us – she loves spending time with her family, exploring national parks and running. But Laura is anything but ordinary.
In 2006, Laura’s sister Taylor was diagnosed with a rare brain-based disorder called Batten disease, which slowly ravages basic functions like sight, swallowing, walking and talking. There is no known cure or effective treatment, and the disease is always fatal. Despite Taylor’s condition – which had left her blind – she signed up for Girls on the Run back in 2008. One of the older girls, Mary-Kate, took a jump rope and gave one end to Taylor so she could run and walk just like the other girls, but with someone guiding her since she couldn’t see. During the last practice of the semester, Taylor ran a 5K around the track with Mary-Kate guiding her. Although she finished last, the entire group and everyone on the sideline was so inspired that they all joined her for her final lap.
Taylor later ran her first 5K race – the Jingle Jog 5K – in Charlotte, North Carolina, as part of the Thunder Road Marathon and Half Marathon. Although Taylor stumbled and fell several times on the course, she pulled herself up, said she could keep running and did just that. Taylor and Mary-Kate, tethered together, finished the race in just less than an hour.
“They didn’t run fast enough to win an official award, but watching them cross that finish line remains one of the most moving things I’ve ever witnessed. In that moment, I realized that I could never, EVER give up on my sister or my fight against Batten disease. And when the trees bloomed that next spring, I started running for her.” ~Laura
Laura has committed to running a half marathon blindfolded this November to honor Taylor and raise money to fight back against Batten disease. Most people think running a half marathon is hard enough. But blindfolded?
I got to chat with Laura about what she is doing and her story. Check out what this inspiring runner had to say and how she will run 13.1 miles blindfolded.
How long have you been running, and what inspired you to start?
I’ve been running to stay in shape for most of my life. I played competitive soccer through college. I actually wanted to run for my high school track team, but I couldn’t miss soccer practice for track meets. Running has always been an incredible form of release for me. Aside from the obvious fitness benefit, it’s a great way to relieve stress, and I do some of my best thinking when I’m on the run. However, I didn’t start entering races on a regular basis until 2009, soon after watching my sister, Taylor, complete her first 5K race with her Girls on the Run team. At the finish line that day, I made a silent promise to run for Taylor as long as I could, no matter what the future held.
Running took on a whole new meaning for you when your sister was diagnosed with Batten disease. Tell us what that is and how your sister has inspired you.
Batten disease is a brain-based disorder with no known cure or effective treatment (yet). It’s rare, and it affects mostly children. It has multiple forms; Taylor has the “infantile” form. Most kids with Batten disease are born healthy. But they’re missing an enzyme that cleans gunk out of our cells. When the gunk builds up, the cells die. And when that happens, affected kids go blind. They have seizures. They lose their speech. They lose their ability to walk. They have to use feeding tubes. And Batten disease is always fatal.
What Taylor achieved by running her 5Ks and the fact that she set out to run those races in the first place symbolize the incredible courage that serves as an inspiration to everyone who meets my sister. Faced with Batten disease, which has systematically robbed her of her vision and her abilities, she has continued to find joy in the smallest things and reminds all of us what laughter is when times get really tough. Taylor could have curled up into a ball and said, “I drew a pretty lousy card, so you should all just feel sorry for me.” But she never did that. She dared her disease to take away the “normal” experiences she craved – experiences like doing Girls on the Run with her friends – and she did what she had to do to overcome her unique challenges. She knew she wouldn’t cross the finish line first, but she still crossed it – and she crossed it RUNNING.
The way Taylor approached her experience on that team and the way she ran those races became a symbol for our fight against Batten disease, both on a personal level and for the organization I co-founded in her honor: Taylor’s Tale. For me, it has become a test of endurance. When I run a long race, I focus on running a great 2 miles, or whatever distance lies between each aid station. In the same way, I focus on achieving small miracles in the fight for people like my sister each day. I believe that if we can all do that, we’ll reach the ultimate finish line and write the happy ending to Taylor’s Tale.
Finish this sentence: I run because _____________.
I run because I can. Because it makes me feel alive, and because I promised my sister I’d never stop running for her.
You are taking on a HUGE mission this year: to run a half marathon blindfolded in your sister’s honor. How are you training for that? What is the most challenging part? Are you scared?
I enlisted the support of Andrew Swistak, my good friend and fellow runner, to help me achieve my goal of running a half marathon blindfolded for Taylor. Andrew works at the school Taylor attended when she took part in Girls on the Run, so it means a lot to me that he will guide me to the finish line at the Thunder Road Half Marathon in November. We started training about 5 months in advance. Andrew and I each hold an end of a 3-foot bungee cord. With the exception of turns and obstacles, such as oncoming cars, Andrew leaves a lot of slack in the cord; it’s almost as if I’m running alone. But if we need to make a 90-degree turn, for example, he’ll announce the direction and provide a countdown. If we approach an oncoming car, he’ll reduce the slack in the bungee cord. He’ll also give me a heads up about things like speed bumps and curbs. So far, the most challenging parts have been perfecting my timing for things like curb jumps. I mistimed one of those and sprained an ankle during our first practice run. Matching my normal speed is also a huge challenge. I’d like to achieve a per-mile pace somewhere in the low to mid-8s, which is closer to my regular pace for a long race.
How did you choose the Thunder Road Half Marathon for this experience?
I’ve run the Thunder Road Half Marathon every year since 2009 with the exception of 2011 (that year, I had surgery for a soccer injury the morning before the race). It’s my hometown’s major race, and the organizers do a great job with it. But the most important reason I chose it for my blindfolded run is that Taylor ran her first 5K at Thunder Road. It was at Thunder Road that I made that silent promise to always run for my little sister – even if I had to crawl – as I watched her cross the finish line of the 5K race. This year’s event will mark the 5-year anniversary of that moment, so I wanted to do something big to honor Taylor and the incredible courage she showed that day.
Your mom is taking on her first 5K that day too and has never run a race. What does that mean to you? How is her training going?
It means a lot to me that my quest to run a blindfolded race inspired my mom to tackle a challenge of her own. During her first training session, she said she didn’t think she could run 3.1 miles without stopping. She has osteoporosis, and though she walks to stay fit, walking and running are like night and day. But even as she said “I can’t,” I had to urge her to slow down. And when I was sidelined for a few weeks with an ankle injury, she went to the gym and ran without me. She has that same competitive fire that lives in Taylor, and I know that she’ll be okay on race day. I’ve never known my mom to fail at anything she said she would do. Like Taylor, she inspires me.
How is your sister doing today? Is she still running? What does she think about your decision to run 13.1 miles blindfolded?
Loss of mobility is one of the major effects of Batten disease. Children with this disease end up in a wheelchair. Taylor isn’t there yet, but she can’t run any longer. She does pool and horseback riding therapy with a wonderful physical therapist, and those activities help keep her strong. We also take her to the YMCA to walk on the indoor track or treadmill.
I hope Taylor will feel proud of my decision to run 13.1 miles blindfolded because of what it symbolizes – her own incredible accomplishment. I hope she knows that the courage with which she faces her disease fuels me not only in my quest to conquer this race, but more importantly to be a better person, to live life to the fullest and to help save people like her.
There are a lot of new runners who read this blog. What advice would you give to someone who is just starting out or is taking on their first full or half marathon this year?
Set realistic goals. You only get one body; you have to take care of it. That’s something I learned the hard way. I ruined my ankles playing soccer, and I made things worse by playing hurt. If you have a time or distance goal, think about where you are today and determine if it’s realistic. Think about the motivation behind your goal. And remember that quantity isn’t always better than quality. There’s something to be said for cross training and good old-fashioned rest. I set a string of PRs (personal records) in multiple distances this spring after cutting my training mileage almost in half.
Do what makes you happy. Life’s too short to do anything else. I run for Taylor, but I have to be honest – I run for myself, too. It makes my body and my soul feel good. Figure out what makes you happy. Do you like to run with or without music? With friends or solo? In the gym or in the great outdoors? Short or long distances? In organized races or just for fun? Answer these questions, set realistic goals and you’ll be a runner for life.
If people want to support your journey, how can they do it? Where else can people find you?
If you live in or near Charlotte, North Carolina, or can get there on Thunder Road race day (Nov. 16), we’d love to have you on the Taylor’s Tale team – no blindfold required. We want to turn the course purple for Taylor; we’ll provide nice, moisture-wicking shirts and an informal get-together post-race for anyone who’s interested. You can run the 5K, half marathon or full marathon. Just be sure to select “Taylor’s Tale” from the optional “Choose an Existing Group” list when you register at www.runcharlotte.com.
If you can’t join us, donate to help save kids like Taylor here. Taylor’s Tale is a 501(c)3 nonprofit organization, and all gifts are 100 percent tax-deductible. Our Web site makes it easy to give and provides other ways you can get involved in the fight against rare and genetic diseases.
What do you think about Laura’s journey to run a race blindfolded? Have you ever used running to do something extraordinary for someone else?