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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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G.R.I.T.

Hello and welcome back to another blog! GRIT, what does that word mean to you when you hear it? The first thought that comes to mind for me is ceaselessly digging deep. Is it ok to say of yourself...I would use the word grit to define myself? I think so! I think grit is what helps us survive in this life. Without it, what would we really be? For some I think it’s required from the beginning to survive, for others I think it’s something that suddenly is needed to survive. Either way, I think it’s in us all. It’s when and how we choose to tap into it that it takes on it’s true meaning within us. 

My dad and me

G.R.I.T.    Guts, resilience, initiative, tenacity. These are all words that for me have been in my being from the beginning. Not because I wanted them to be, but because to survive I had to possess these qualities. Not because I think I’m so great, but because I had to find a way around a lifelong physical disability in order to live well. 

Guts…this is one for me that stands out. It takes guts for me pretty much to walk into any public place. To walk into a room or a store, or wherever it may be takes guts. People stare. People gawk. People whisper. Parents shush their children’s questions. People shun me because I’m different. Anyone who has spent any time with me in a public place knows these things to be true. One of the most recent hurtful examples, is yet another incident from a recent college campus tour with my son. As our tour was walking through campus there was a group of cheerleaders welcoming everyone as they came by with a very friendly hello and welcome to campus! As Luke and I approached, with me on my scooter, you could visibly see their faces fall, and almost a panic set in. They were uncomfortable, and so as he and I walked by, they turned their backs to us and said nothing. After we passed we then heard them enthusiastically greeting those that came behind us. I said to Luke, “I guess they don’t greet people in scooters here”, to which he said, “yeah, or the guy with the person in a scooter”. It hurt us. It stung. We continued on in silence, stunned at the blatant disregard for us as humans. However, we didn’t leave the tour, we had the guts to keep going after that.  Just one example of a lifetime of those same kind of experiences.

Resilience… The capacity to recover quickly. This one is key. I have to do this several times throughout the day. Each day I run into things that I can’t physically do. Roadblocks. Each day holds something different it seems. New things that were once obtainable are harder, or no longer within my physical capabilities the same way they once were. That’s what progressive muscle disease is like. It’s sneaky. Each time that happens, mentally it’s a hit. Kind of like a sucker punch to the gut. If I stayed down and moped every time that happened, I would get nothing accomplished! You have to constantly recover and come up with new adaptations in the moment, so this is also a non-negotiable. 

Taking a moment on my 5k last winter to recover and keep going! Wanted to quit in this very moment, but I did not!

Initiative….The ability to assess and initiate things independently. This one, of course, is one of my most treasured gifts that I will cling to until something absolutely rips this out of my grip. I hope this never happens. We all do, right? The ability to do and think for ourselves is a true gift. Having a disability, I think I have the insight to appreciate this even more. That in itself is a gift that not everyone gets to experience. I’m grateful. It’s what drives me each and every moment. My wheels are constantly turning, creating, brainstorming on how to continue to adapt things to create an independent life for myself. The fact is, I’m not fully independent, but I am as much as I can possibly be. 

Committed to my exercise routine 

Tenacity…..Determination. This picture of me and my dad that I recently ran across reminded me of my determination to conquer those monkey bars. I was obsessed! It took me years, but I think by the time I was in the second grade I was finally able to cross those without help just like my peers! I got all the way across. I loved seeing the blisters on my hands from practicing. I didn’t care if they hurt! It meant I was trying. I guess my big challenges for myself that continue to this day started way back when. 😉

So, in closing, I think on top of being humbly courageous, it's important to embrace the grit within yourself. My mind is filled with examples of those whom I know personally, or from afar, that exemplify grit. I think it’s a word that holds so much different meaning, but definitely one we all need in our lives to keep us moving forward! It’s your tunnel, your vision for life, so go ahead and light that sucker up yourself. Have faith, you’ve got this! 💚



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