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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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In Spite Of, or Because Of?

Hello, welcome to another week at Humbly Courageous. We’ve officially entered my favorite season, fall. I love everything about it. I don’t even care that it basically rolls out the red carpet for winter to arrive because it’s just too beautiful to deny! If I could bottle up the warm feeling I get from fall and dab it on when I’m feeling down, that would be fantastic!

As a disabled person, I often hear, wow you did that in spite of your disability! You went snow and water skiing, despite your disability! You went to college, despite your disability! You had two kids, despite your disability! You’ve completed two marathons and are training for a third, despite your disability! While all of those things are true I suppose, I also like to think of those things as because of my disability. Seems more purposeful to me when I think of it that way. 

I feel like my disability drives me in a way that maybe I wouldn’t be if I weren’t disabled. It challenges me on a daily basis, pushes me to do my best. Each day, I wake up, I struggle to sit up in bed, swing my feet over the edge and slowly stand. I never know how I will feel, but I can tell you that I can instantly gauge my strength level for the day in the first two steps I take. Because of that, I quickly plan in my mind what alterations I will make to my day.  There are those rare days when I wake up and I think, wow, I’m feeling nice and strong today, relatively speaking. I cherish those days more and more. 

Because of my disability, I get to view the world from a different perspective. For me that perspective has definitely evolved over the years. I’ve gone from being  consumed by feelings of why did this happen to me and why is this my life? To feeling like ok, this is what we’ve got, how can I use it for good? 

I have this memory that keeps popping up in my mind, and I think it must be something I should share. I feel like whether we are conscious of it or not, these types of people throughout our lives surely make a lasting impression. Some of you may remember I have shared that growing up I was in a competitive swim club. For the sole reason that swimming was good for my muscles, not because I was a fast swimmer. It helped that my best friends did it too. The head coach was one of those “one in a million” type of people. I felt seen by her. Each practice, she would walk along the edge of the pool and cheer me on. “Kick, kick, kick Amy, use those legs!” she would say. The other swimmers would just wiz by me while it felt like I was barely moving, but I did as she said! I despised being the slowest kid out there, but she made it better. She invested in me. While she had all those other kids who were fantastic swimmers, she focused on helping me too. 

That’s what I strive to be. The one someone finds when they feel like they can’t take it anymore, when their aloneness is eating them alive. We just don’t know the impact we can have on others. Maybe you have been lucky enough to have a few people like my former swimming coach throughout your life. Because of my disability, I can be that for someone else. That’s the way I see it anyway. 💚 

 I would like to share a message with you that I received this week from a young woman, also living with Bethlem Myopathy. I was so touched by and encouraged by her message. 


Bethlem Myopathy Fact:
There is currently no treatment for Bethlem Myopathy. 







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