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by Amanda F.
I started running track and cross-country with my sister Grace nearly two decades ago in elementary school. Historically, I have been the sister to make everything a serious competition, while Grace is the teammate everyone naturally gravitates towards for hilarious stories and words of encouragement. She makes tedious miles fly by with her life observations, whit, and effortless charm.
While in middle school, Grace was diagnosed with vascular EDS. As a teenager at the time, I had never heard of EDS or understood how the different types of EDS affect day-to-day life. Due to the fact that my sister has never once asked for sympathy for the cards she has been dealt, I remained largely ignorant of EDS for many years. It was not until later in life that I started learning more about the obstacles people with EDS face and gained an appreciation for their perseverance and tenacity. Although Grace is living with EDS, she continued track and cross-country and remains a runner today.
As a lifelong runner, Grace recognizes the power of bringing awareness to lesser-known medical conditions through the sport and community races. In fact, my generous sister has participated in dozens of races that bring awareness to other diseases and challenges—breast cancer, ovarian cancer, organ donation, and Duchenne muscular dystrophy—that have directly impacted our family. Looking back, I am in awe of my sister’s selfless ability to put our family’s needs in front of her own while she is living with EDS.
A few years ago, Grace decided she wanted to use running to raise awareness for EDS. She did extensive research and concluded running a marathon—a goal few people with EDS have accomplished—in her hometown of Cleveland, Ohio would garner the most awareness. She set plans in motion to train for the race, order zebra inspired EDS t-shirts for our entire extended family, and contact local media to spread awareness even further. I was so proud of the goal she set to accomplish and promised to run the last half of the race with her in a teal zebra shirt.
Leading up to the marathon, logistical challenges crept their way into nearly every aspect of the race. Determined to accomplish her dream of becoming an occupational therapist, my sister had to fly to and from California just a few days before the race for an admissions interview, completely throwing her sleep cycle out of whack. Due to the lack of sleep, she missed her window of opportunity to collect her race bib and timing chip, forcing her to track down registration officials the morning of the marathon for a replacement. Having completed several marathons myself, I was getting increasingly nervous my sister was facing a daunting task with multiple factors stacked against her. Grace, on the other hand, was more concerned about everyone receiving their colorful EDS awareness shirts to support her on race day. Nothing was coming between her and that finish line.
As the race started, another obstacle reared its ugly head into Grace’s goal; the weather.
Cleveland is not known for its perfect weather, but in mid-May, hopes are higher that the weather will be pleasant. On May 15th, 2016, Grace started her journey in sleeting rain that turned into snow by mile 13. As I jumped into the race with her, she turned to me and said, “Is this a joke? It’s May, I am wearing a hat, and snow is falling. These next 13 miles should be fun.” Together we trekked and laughed along the snow-covered Cleveland streets. Around mile 20, additional friends and family joined in the race and the sun started to peek around the heavy clouds. As a pack of snow and rain-soaked zebras, we crossed the finish line under a bright, sunny sky and Grace officially accomplished her goal.
I will never forget how excited my sister was to cross the marathon finish line that day. It personally took me several days to process what had just happened and how my sister accomplished her goal.
In some ways, the race was a metaphor for how determined Grace is in life. No matter what is thrown at her—rain, sleet, snow, or EDS—she gets through it with a spirit and outlook that is unique to her.
Every day, she actively chooses to see the kindness in people, love her pug Stella, and offer her gifts to her future occupational therapy patients. EDS never has—and never will—define how she lives her life. She taught me more about overcoming obstacles than I can ever teach her; I am proud to call her my sister.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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