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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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Walls

Hello and welcome to a new week at Humbly Courageous. I’m glad you are here!

With each passing year, the walls I built around myself become taller, thicker, less penatrable. The construction of my walls began when I was young, having a lot of surgeries. The scariest times were when I had to part from my parents, and be wheeled to the operating room surrounded by strangers wearing masks. It was such a terrifying experience for me. Although most were kind once back there, it was a place of unknowns. I was completely at their mercy. Also, knowing I’d wake up in horrible pain and completely immobile was equally as frightening to me. Not to mention, I was also always violently ill, sometimes for days, after anesthesia.


I began constructing these walls because it felt like a barrier of protection that I needed with me at all times. I didn’t want to trust just anyone. It felt like doctors were against me because they could never help my physical condition. They couldn’t even name it. Every encounter seemed like a dead end. I became very guarded and closed off emotionally.

There were other things happening in my life too that caused me to lose trust in others. The construction of my walls would go on for a very long time. Taller, thicker as time went on. I built myself quite a fortress. Anyone else? I know I’m not alone. Many of us build walls for many different reasons. They don’t serve us well though. The construction of my walls felt like the only thing I had control of in my life. At least I could do something

What the walls do is keep us from allowing people into our lives that do want to help us and make us feel safe. We often self- sabotage, saying goodbye to relationships that could have served us well. 

One of the hardest things, when my now husband broke up with me my junior year of high school, was letting go of someone I had finally trusted and let in behind the walls. Before him, I had never been so openly candid with someone about how living with a disability made me feel. After he was gone, I felt so alone again. I regretted letting someone in. I had a wonderful family and so many great friends. I just never went that deep with anyone about my true feelings facing my disability.

After that, I promised myself to not do that again. The things we think when we are young! Fast forward to now, after two kids and being married to my high school sweetheart who parted ways with me so many years ago, the walls have come down. Writing has also helped me immensely to let others in and tear down some walls. Allowing myself to be vulnerable has benefited me in many ways. Not to say, I don’t still have a tendency to want to construct them again, but I am so glad they are mostly gone. It was lonely living behind those walls. That’s just the thing, when we have walls, we trap ourselves in the loneliness and isolation. 

As I sit here, waiting for my son to have a minor surgical procedure done, in the same hospital I spent so much time in years ago, I was surprised to feel that tightness in my chest. Smelling the familiar smells and hearing the familiar sounds of the hospital immediately transports me back in time. I began to panic, my breath becoming quicker. Seeing him being wheeled back with the strangers, gave me a taste of what life was like for my own parents. 


It takes humble courage to deconstruct those walls we spend so long building to protect ourselves. Taking them down is risky. It involves trust, and there is a chance you will get hurt. However, I think there is more of a chance you won’t, and beautiful relationships can be formed. So the next time you see one of those “end construction” signs along the road, let’s let it be a reminder to end our own construction, and to be wall free. 💚


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