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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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Unique

Hello and welcome! I don’t know if it’s because my son is leaving for college in approximately 3weeks, or if it’s the fact that my youngest is now driving, but I feel like trying to hold onto this summer, as it quickly slips away, is what I want most! Time is such a funny thing. When you want it to go fast it goes slow, and when you want to stop time in it’s tracks, it seems to go by in the blink of an eye. 

It feels like just yesterday I was meeting my husband Jamie for the first time in the science hall of our high school. That was over 30 years ago! Not too long after I started dating Jamie, he said something that I believe was the seed that was planted to start me on my journey of accepting myself, disability and all. Up until that time, I struggled quite a bit with, why me? I would continue to struggle with that for a long time, and would be lying if I said that thought never crossed my mind to this day. It’s infrequent now though, and it’s taken a lot of hard work to get to this point. It was a simple thing really, he said “you are unique, there is no one else like you.” At the time, that was true, and I guess in a sense it still is. There was no one at my high school even remotely like me from a disability standpoint. At the time, I was “unidentified” according to my doctors. I liked his word better. It made me feel special, and like there was a reason for all of the struggle that comes with living with a lifelong disability. 

My biggest fan 

Being unique comes with its own set of  challenges. It is isolating, sad, infuriating. But also, it can be fun, exciting, mysterious, almost like you have insight into a whole different world that many don’t have. The ability to see things from a totally different perspective. It’s like an exclusive club, except people aren’t lined up to get in. Living disabled, my life experiences are very different from most. There are things from the start to finish of a day that go through my mind that those who are not disabled would ever need to think or worry about. 

I’ve done a lot of reflecting on my uniqueness. It does still feel isolating a lot of the time, but less so now that I’ve connected with so many others in my same situation.

Being unique isn’t something I would wish for, but now that I’ve connected with it, it feels right. Of course, it would be wonderful to someday be cured of my disease. I would love to have the years to do all the things my disabled body has never allowed me to do. I think about it a lot actually. Especially seeing things I was once able to do slowly slip away from my reality as my disease progresses. I also think, if that were to happen I wouldn’t be the only me I’ve ever known. I would miss the girl who has humbly courageously carried on, head held high, swaying back and forth as I propel myself forward on these legs that have carried me through so much. I hope you too can tap into what makes you unique and use your uniqueness to help and encourage others. This world needs your voice, your story. There are people on their journey just starting out that need to hear from those who have gone before them. Be proud and strong in your uniqueness. 💚


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