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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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The Gift

Hello and welcome back, or if you are new here, welcome to Humbly Courageous! The gift of movement. How often do you think about and appreciate all your body can do? All the little movements our bodies do that we may take for granted. Lifting your hand to your mouth to brush your teeth, eat, brush your hair, bend over to tie your shoes, sit up in bed, just to name a few. I haven’t always been so acutely aware and as grateful as I should be for the gift of movement that I have. Like most of us do, I took it for granted far too often. 

You know the saying, someone always has it worse than you, be grateful! While this is certainly true, it’s not always helpful to say that to someone. But also, when soaking in the truth of that statement, if you are able, it’s really eye opening. The truth is, we all struggle in some way. Some days, months, years we are better equipped to handle our struggles, and sometimes they almost take us under and we feel like we are drowning. It’s easy to get bitter towards others that have what we don’t, physically speaking in this instance.

I decided a long time ago, that I don’t have the energy to be bitter, nor the right to be, towards all non disabled people. It would be easy for me to. I could resent others because they are capable of doing things I cannot, or I can face the reality that is out of my control, and instead put my energy towards where I’m at right now. Everywhere I go, everything I watch on TV is largely non disabled people. Rarely, do I see in person, a person with a visible disability. In a rare instance, a TV show may show a person with a disability, but we still live in a time where we think, oh wow that’s awesome, finally! It should just be the norm, but it’s not. 

Part of how I appreciate my gift of movement is exercise. I became attracted to exercise as I’ve discussed before during college. Since then, I’ve been pretty diligent with consistency in exercising in some form. I’m always looking for treatments or therapies off the beaten path. I’ve had some success with those types of things that I’ve chased down, and some I haven’t. Trial and error, but continuing to move forward. To me, “exercise” is swimming, water jogging, stretching, or even chores around the house certainly are exercise for me. Exercise for me doesn’t have to mean what it means to a non disabled person. It’s what I make it, and it keeps me moving and motivated. I have no doubt that it has helped me. 

One of the most defining and precious moments in my life, was when my son Jack taught me how to run when I was 45 years old. I recently went back and watched that video. He taught me to run in the water. I was fighting back the tears, as I watched again. Even though I had watched others run my whole life, I had no idea how to do it. He was 12 at the time. He was so kind, gentle, patient and encouraging. It took my breath away. Since then, I’ve been consistent and I’ve improved so much. I couldn’t believe it when I watched that first time, how far I’ve come with it. I never thought I’d have the chance to “run” in my lifetime. It wasn’t the way I had daydreamed about so many times throughout my life, but possibly even better. It was my way. 


It takes humble courage to accept that your way may not look like most around you. It takes confidence to commit to something so grueling. I cannot ignore the fact that I have the gift of movement that so many long for. I want to protect it, and honor it for as long as I have it. I always say, do whatever you can, however you can. You may just surprise yourself. 💚




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