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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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I Get To

Welcome to another week at Humbly Courageous. I’m glad you are here!

Instead of saying I have to, try replacing that with I get to. Over time, watch how that changes the way you see things. Your abilities. You will start to see things differently. 

That is something that has really helped me. Focusing on what I get to do instead of making excuses and not using the abilities I do have today. Wasting time and being angry about what I can’t do instead of being happy with what I get to do. Even things like household chores that I’m still able to do. Most things like laundry or cooking have to be adapted in a way that works for me, but I’m still able to do those things. I try my best just to be grateful for the ability to keep doing those things. Tomorrow’s abilities aren’t promised. I’m feeling that more and more. Between my disease and aging, I feel like everyday is a huge battle to come out ahead. 



Living with Muscular Dystrophy, I am often trying to find that happy place between the feelings of, I’m not doing enough, to the feelings of exhaustion and pain because I’ve done too much. It’s a different balance everyday.

You may be surprised to hear that even though my muscles are weak, I do have some short periods of time where I get these small bursts of strength. Not strength like a non disabled person has, but a short burst of  increased strength for me. That’s happened most of my life.

It usually just pops up from out of nowhere and doesn’t happen too often. This past weekend, I was sitting outside enjoying the beautiful weather on our patio with my husband . We were getting ready to go inside and I stood up and told him “I feel like I want to try and walk to the back of of yard and back without any assistance from my walking sticks or cane”. Our yard is pretty big and quite uneven. He said, “you sure, do you need help?” I assured him I thought I’d be fine. It wasn’t easy and there were a few moments where I questioned my decision, as I lost my balance a couple of times. In my mind, this is why I exercise regularly. To try and build any strength I can. I love how excited he gets for me when these things happen. He’s so good at documenting these meaningful moments for me too. It’s good for me to look back on these times. It gives me hope.

When I made it back to the patio, I felt relief and a sense of accomplishment. Each time I’m able to do something like this, it gives me hope and builds my confidence. Obviously, I wish these bursts of strength were more frequent or lasted longer, but hey I will take what I can get. 

Each time I do one of these activities gifted by my bursts of strength, I know there is a chance my legs may fail me, and I could fall. It takes humble courage to take risks, but I think it’s worth it to reap the rewards on the other side. Even if those rewards are a quiet inner sense of accomplishment, it’s worth it. It makes a difference in our lives when we can accomplish things we didn’t think were possible. 💚

For more on my story, follow me on Instagram @ashinneman

Check out my weekly column “Disability in the City” in The Hamilton County Reporter. https://readthereporter.com/finishing-the-boston-marathon/

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