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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 Wasn’t Ready

I heard a quote this week that really resonated with me. It said, “I asked God for flowers, and He gave me rain.” I wasn’t ready to get what I was asking for. I needed to grow in many ways to be prepared to take on what I needed to, in order to fulfill my purpose. If He had just given me the flowers, I would have missed the growing season. I wouldn’t have understood the purpose.

I wasn’t ready for my path. I had a lot to learn to understand what I needed to do in my life. To be educated to help the people I need to. 

For so long, I prayed and prayed, “please heal me.” I felt like I was placed in the wrong body. It just didn’t feel right. I felt trapped. The lack of answers was really God telling me to wait. I had to prepare. 44 years of preparation is a long time. 



As the puzzle pieces finally came together, the last one finally clicked into place, the bigger picture was revealed. In those early days post diagnosis, there would be times where all the incoming realizations were overwhelming, in a good way. Six years post diagnosis, I am still getting those aha moments. It’s honestly really special to be able to look at all God wanted me to learn, and how learning those things have real life applications.

It doesn’t just happen though. It is putting into practice what I learned all of those years undiagnosed. Making a consistent effort to not waste the years of learning. It taught me much more than I could ever form into words. It was the hardest thing I have lived through. Even harder than the physical struggles my disability brings, living in the unknown space for so long, was so difficult, and isolating. I knew absolutely zero people who were dealing with what I was. 

Many of my childhood friends (who are still my friends today) have said to me, “I’m sorry, I didn’t know you were struggling so much. You didn’t show it.” I assure them there was nothing that they could do to be better friends. They were/are amazing. I simply didn’t know how to talk about such a rare thing. I didn’t have the words to voice or express what was going on behind the scenes. 

When you don’t have real life examples of things you are struggling with, it can be really hard to make sense of those things. When you don’t have anyone you know to go before you and illuminate the path, it is like living in total darkness in that aspect. The feeling of unendingness is dreadful and consuming.

Strangely enough, when I was diagnosed, I instantly went from one type of unendingness to another. I was diagnosed with a disease that has no cure, and has many unknowns of its own, yet the diagnosis comforted me. I felt like I had been spinning for 44 years, and the spinning suddenly stopped. I could steady myself. 

It’s not that I don’t struggle with living with Muscular Dystrophy, but not only were those years of the unknown teaching me how to help others, it was also teaching me how to help myself. As things continue to decline, my faith is what keeps me from unraveling. 

My faith tells me, sometimes, you have to learn to love the rain, so you can appreciate the beauty of the flowers. 💚










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