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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

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How do I want this story to go?

Hello and welcome to another week at Humbly Courageous. I am so glad you are here.

“If my life were a book and I were the author, how would I want this story to go?” ~ Amy Purdy

Several years ago, my sister suggested I listen to Amy Purdy’s interview with Oprah on Super Soul Sunday. After listening, I was intrigued. Then I listened to Amy’s TED talk. I was hooked on her positive outlook towards her disability. I since have listened to several other interviews she has done, read her book “On My Own Two Feet”, and watched in awe when she danced on Dancing With the Stars and was runner up, dancing on two prosthetic legs. Amy was one of my biggest inspirations to live my life to the fullest once I was finally diagnosed. Amy is an accomplished motivational speaker, and award winning adaptive athlete and two-time Paralympic medalist. Amy continues to motivate and inspire many all over the world because she is willing to openly share her story. In her TED talk, she says her legs haven't disabled her, but rather enabled her to use her imagination to break through borders, where the actual ends, and the imagination and the story begins. 

Amy helped me to first see that my disability could be viewed as a blessing used to help others. It would be the start of changing the way that I viewed myself, for the better. 

As I write this, I am looking out from our vacation home in the Colorado mountains pondering the divine intervention that happened when I opened up my Instagram this morning. The first thing I saw was she was hosting an event in a mountain town about an hour from where we are staying. I couldn’t believe it! I messaged her and got more details, and to make a long story short, I got to meet one of my life’s heroes and biggest motivators. 


Meeting Amy:

When attending an event where you have the opportunity to meet someone who has made such an impact on your life, you don’t know what to expect. Amy and her husband were hosting a fundraising even event at Copper Mountain for their non-profit organization, Adaptive Action Sports. They support adaptive snowboarders of all different levels, many of which are amputees. 

As soon as we entered, Amy came to warmly greet us. It was amazing. It was an intimate setting, and many people there knew each other. They couldn’t have been more welcoming to us. To make a long story short, it was much more than I could have imagined. I got to spend some time chatting with Amy, which was a dream come true. She was so gracious and kind.


Getting the opportunity to share with someone how sharing their story, helped to better my life, feels like a gift. We both talked about how sharing our stories has such potential to help shape someone’s life that is reading or listening to our shared stories at just the right time. I will not forget meeting Amy, and her friends/family anytime soon. We were among some amazing disabled athletes last night.  

This week started out so emotionally tough for me. Staying in a place that isn’t home, where all my steps are counted and emblazoned into my brain. Where I know exactly which furniture and walls I can grab onto, as I make my way around my home. Where I know every tiny step up or change in footing. A place where I can get dressed on my own, turn over in bed without complete exhaustion. A place that enables me to live independently. Being away from home is a glaring reminder of how fragile my independence really is.  How easily it vanishes. 

For most, staying at an elevation of almost 9,000 feet is an adjustment. It’s taxing on your body as it adjusts. For me, it has taken away a lot of my independence. It has been almost impossible to walk. I have felt unbelievably weak. I spend a lot of my time memorizing the new place and learning new steps. In the evenings, I need help dressing in many layers for bed, as my body has had a really hard time adjusting to the temperatures here. I started this week feeling very discouraged. Fighting extreme anger as some of my basic independence is gone. 

The hardest part of this to swallow is comparing this trip to this house to the last trip in 2019. Realizing the difference in my strength from then to now has been a punch to the gut. I think when I am living in it, it’s definitely noticeable, but taking a step back and seeing the stark difference between the two trips has been extremely humbling. Lots of humble courage being summoned this week. 



Meeting Amy was the boost I needed to carry on, and a good reminder to “live inspired” as is her slogan. It’s natural to be upset and feel anger towards loss of independence. That just means it’s time to get creative again, and figure out a new way of doing things. Keep on keeping on. There is always a way. 💚

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