Adapting

Editor’s Note: Today I saw a video that turned on a huge lightbulb for me about why CrossFit has been such a great fit in my life, and brought me back to something that I have an extreme passion for. The result is a pretty long post, but it needs to be that way, and I hope you’ll stick it out and read the whole thing.

Two summers ago (and for the first part of last summer), I worked for a non-profit rafting company in Moab, UT called Splore, running river trips for people with disabilities and their families and friends. As it turns out, rafting is totally adaptive–you can bring as much crap as you want, and you don’t have to be able to swim, walk, or even talk in order to do it. If you needed to take 12 medications every day, you just brought them with you; If you were on a liquid diet, we would bring a hand-crank blender; If you had a wheelchair, we would just strap it down and lift you into the raft.

Suddenly, having the ability to go to the bathroom independently or even feed myself took on new meaning as I met more and more people for whom such tasks were impossible. But these folks did the opposite of give up or feel sorry for themselves–they sought out new challenges like whitewater rafting, which is something that even most able-bodied people get nervous about.

Each trip I took with Splore gave me a greater perspective on what it meant to live life to your fullest ability, and that “living life to the fullest” meant something totally different for everyone. I felt very humbled, not by what I lacked, but by what I had.

At the end of my first summer, I was invited on a trip for people with Friederich’s Ataxia, or FA. FA is a rare, genetic, degenerative neuromuscular disease that has no cure and limited treatment options. Most people with FA will end up using a wheelchair and eventually losing the majority of their balance, coordination, and motor skills, and many will die in early- to mid-adulthood from resulting heart complications. And yet the people with FA that I met on that trip, and those who I continue to meet, are the most positive, optimistic, generous, and, most of all, adventurous people I have ever met. The lessons I have learned about physical strength and perceived boundaries in CrossFit, though profound, pale in comparison to the things my friends with FA have taught me about the true spirit of human perseverance.

Within that amazing group of people was a young man named Aaron. The founder of the annual FA rafting trip, Aaron had been going on river trips for over a decade. He had pulled his family into his love for the river so much that his brother, who does not have FA, was in his second season of guiding for Splore. During our trip, Aaron was experiencing the advanced stages of FA–he had been in a wheelchair for years, had very little control of the movement in his arms and legs, and was even having trouble speaking coherently. But he came alive on the river, watching excitedly as we strapped his collapsed wheelchair to the metal raft frame and smiling wildly as we lifted him into the boat. On the final afternoon of our trip, after five exhausting days on the river, we had reached the boat ramp where our trailers waited for us, and began to pack up for the drive back to Moab. We would then be faced with unpacking and cleaning all of the supplies and gear from the past five days–a process known as “de-rigging,” which is basically the last thing anyone wants to do after a week of heavy lifting, rowing through flatwater, and pooping in a shared metal box (oh yeah).

As we finished loading the trucks, Aaron’s nurse called me over to ask if I would wait with him in the outhouse near the parking lot while she went to get a dry change of clothes. As I stood there with Aaron, supporting his shoulders so he didn’t fall off the toilet and thinking about how much I didn’t want to go back and clean out five days’ worth of coolers, dishes, tents full of sand, and boxes full of trash, Aaron started crying. “I would give anything,” he said, “to be able to help you de-rig.”

Even though I did not know Aaron for very long, he made a huge impact on my life. He passed away a few months after our trip, and Brandon and I drove to Colorado from Moab to visit him about a week before he died. We happened to witness the last interaction between him and his brother, the raft guide. His last words to his brother were, “See you on the river.”

I bring up Aaron’s story for two reasons: One, to show you how inspiring the community of people with FA are, and two, to give an incredible example of the impact that adaptive recreation can have on people who are not generally given the opportunity to experience new things.

Today I saw an amazing video of a man with FA who does CrossFit, and I had a lightbulb moment. After a very profound season of being on the “giving” side of adaptive recreation, I realized that I have been experiencing my own version of adaptive recreation with CrossFit. In fact, in almost every way, ALL CrossFit gyms are adaptive. And maybe that’s why I feel so drawn to this community that does not ridicule you for not being able to do something, but that nurtures a desire to push beyond your boundaries, and shares your excitement in even the smallest achievements. A community of people like Aaron, who want to be able to experience all of it: the burpees, the blisters, the sweat running into your eyes–even the part where you clean out a giant box filled with poop.

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5 thoughts on “Adapting

  1. Claire.. This was TRULY inspiring and just amazing. I love hearing stories like that and it just makes you really appreciate what you have. Beautiful.

    I have an issue with running, and my younger sister casually runs 3-5 miles daily, for fun. I run a mile and complain. I asked her once what keeps her going. Our brother is in a wheelchair and cannot walk, and she said she runs for people like him who would do anything just to be able to have a chance to do it. It really puts things into perspective!

    • You’re right, it totally puts things into perspective. I think about that afternoon with Aaron a lot and remind myself that the ability to do things I take for granted (like vacuuming or walking the dog when I’d rather just sleep in), or even the things I dread (like wall balls…) is something that so many people would give anything to experience. And it definitely made it hard to complain about blisters as a newbie raft guide when my boat was full of people who couldn’t walk!

  2. Dear Claire, thank you for sharing your story and experience with Aaron. As a parent of a young adult with FA, I burst into tears hearing Aaron’s words come alive in your blog. I am so thankful that you shared that moment. I am including a link to a video about my son, Sam, like Aaron and Kyle, Sam continues to teach and inspire us – he makes me want to do better and to be better. http://vimeo.com/43579515

    • Thanks for sharing, Amy. What an awesome video! I am always so amazed and inspired by the ability and eagerness of people with FA to keep pushing the limits. I’ve never met a person with FA who wasn’t doing everything they could do make the best of such a frankly crappy situation, and it really puts things into perspective!

  3. Loved this. I live in Utah and have two kids recently diagnosed with FA. I run marathons and my heart breaks that my kids cannot experience the joy I get from running. I’m so glad there are things like this out there to help them experience the greatest things in life. I really enjoyed your perspective. Thanks!

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