Don’t miss the world premiere of the film It’s Raining, So What screening online starting 11/24/16
One of the many incredible people we have met along the journey of making this film is our great new friend Laura Backus. Laura is not only pushing through boundaries and doing what many say can’t be done, but she is inspiring, educating, supporting and encouraging so many others along the way. It is a true privilege and honor to have Laura as our guest blogger this week.
Single Moment in Time – By Laura Backus
Life is a series of single moments. Some moments are so common that you don’t even notice them pass you by. Some obvious memorable moments – marriage, the birth of a child, graduation – are easy to pick out and are defined by joy. Sometimes memorable moments come from tragedy. HOW you respond to those moments DEFINES you. And some moments are just simple ordinary moments that just make up life, seemingly just another ordinary moment, but with extraordinary consequences.
In Nov 2013, I was ending a pretty low-key practice swim just days before Ironman Florida. I was pretty much in a daze, not quite believing that I had made it to Ironman, and I was soaking up every moment I could. From meeting new and old friends, to taking pictures everywhere of everything! “Ooh look an Ironman sign! Oooh look a bike rack! Oooh look the clock!” I was giddy at even the mundane.
You see, I have Ehlers Danlos Syndrome (EDS), a connective tissue disorder that has many complications which require modifications to accomplish the seemingly ordinary. My arches collapse and my hips subluxate when I run. My hips, elbows, or shoulders subluxate (and occasionally dislocate) while I swim or bike. I have cervical instability that can cause an instant migraine that lasts for days. In general EDS is a high pain disorder. So the idea of an Ironman to those with EDS can seem beyond farfetched. Many other EDSers have chastised me for even talking about doing triathlons, they tell me to stop bragging. I had given up on even trying finding others to help me to navigate this bizarre disorder. Instead I focused my time and ‘motivation’ on my “other” community – the larger, slower athletes. Writing about my exploits for some reason motivated people, and created a community.
Returning back to that ordinary moment in Florida: As I exited my swim, I saw 2 people on the beach, one with a really sweet camera and another woman just staring off into the ocean. I’m nosey so just walked right up and asked what they were doing. This is how I met Kevin May and Amy Rosendahl. Joe Stone was out for a swim and they were watching for him to return. This one ordinary moment had some extraordinary consequences!
Kevin told me about Joe and about the film, and I have ZERO clue how we started talking about my own challenges, but we did! Maybe it was my nails that I had painted with zebra stripes? Or maybe it was our similarly named websites?
Finding similarities in differences
Joe’s blog at the time was called “An Ironman’s Journey” whereas my blog is “A Fatgirl’s Ironman Journey”. This was the first of many parallels in our seemingly very different lives. Over the next 5 days we talked and I learned just how Joe would ‘do’ a Triathlon as a quadriplegic. First was his interesting ‘merman’ wetsuit. I don’t really use my legs all that much on the swim because if I kick, I will subluxate or partially dislocate my hips (or my elbows/ shoulders if I pull too hard). I reflected on how we actually swim in a very similar fashion.
An interesting parallel with Joe was how he needed some sort of wrap to hold his hands on the hand-cycle. Prior to meeting Joe, I thought I was the only one that had to ‘do something’ with my hands to be able to cycle comfortably! When on a road bike, I cannot ride more than 30 minutes or so without being in pain from my hyper extended wrists. I found that triathlon bike aero bars held my hands in just the perfect position to not cause pain!
While watching the trailer for It’s Raining So What, I reflected on how Joe had to re-learn how to breathe. He had to consciously think about each breath; it was not something that his body would do automatically. I have similar issues with some muscles. I know it is not BREATHING, but it is an interesting parallel to my own body. I have to think about every pedal stroke on the bike to see if I am using my hamstrings or glutes at all. For some reason they do not work on their own.
All in all though, I have figured out how to overcome my perceived limitations, just like Joe. It takes determination, motivation, and lots of improvisation to make it happen, especially when faced with physical challenges.
The power within all of us
I recall the day that Joe mentioned they were including me in his film. I couldn’t understand for the life of me, WHY!? Joe is doing amazing things; he became a quadriplegic at a pretty young age and he’s challenging the mindset and encouraging others to overcome their perceived limitations. He’s not only getting himself out there, he’s taking an entire community with him! I did ask him WHY ME? He said that different people are personally inspired by different people and actions. It took me a while to understand that fully, but I get it now.
I’m overweight, I’m (older?), I have a genetic disorder, I’m VERY slow, yet I’m out there. Every chance I get, I am pushing someone to follow their dreams; to DO what they dream of doing.
Joe encouraged me to really step into the light with those with Ehlers Danlos. It is a tough crowd, as many are in such pain and and its easy to have a negative mindset when you’re in pain or feeling limited by your own body. I have been yelled at on many occasions to stop ‘flaunting’ my abilities. After meeting Joe, I just KNEW there were more out there like me. We were correct. We now have a growing EDS community focused on activity. It may be 5 extra steps, 5 extra miles, or an Ironman. Each little bit of defeating “I Can’t” just adds to the community of those who seek to overcome perceived limitations.
That one ordinary moment in time, on a beach in 2013, where 3 people started talking about a camera completely changed my perspective on how to encourage others and and how to share my journey to the fullest.
You can see Laura Backus in the documentary It’s Raining, So What. Click here for more information FREE ONLINE WORLD PREMIER Nov 24, 2016.
Learn more about EDS on Laura’s blog “A Fatgirl’s Ironman Journey” and follow Laura on Facebook at https://www.facebook.com/fatgirlironmanjourney
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