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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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Joining Forces

Hello and welcome back to another week at Humbly Courageous! Growing up, I had to tell my medical journey story over and over and over. I dreaded going to all of the doctor’s appointments and telling a new person my story and hoping for answers. I would tell my mom, “I can’t do this today, I don’t want to do this anymore.” Some doctors would blankly stare at me, some would show compassion and thank me for sharing. So, if you would have asked me then if I’d like to be an advocate and share my story over and over in order to help others, I would have said, “no thank you.” It was traumatic at the time because it was always a dead end. Each time I was told, “I’m sorry I just don’t know what this is”, my heart was shattered, and I had to start all over again each time for 44 LONG years. . 

Now, nearly 4 years after being diagnosed, I am finally off of that diagnostic roller coaster.  My thoughts have obviously changed. Now, I’m eager to share my story, over and over in order to help others. It’s not a traumatic experience. It’s truly an honor to be among other advocates and hear them share their stories as well. Of course, I wish we didn’t have to fight so hard for things to just be fair, and accessible. Of course I wish that. But, we do. So why not make the most of it, and join forces to help make these much needed changes, so that maybe those who come along after us won’t have to?

The thing about those living with disabilities is that we are hard wired to be persistent. It’s a necessary survival skill. Without it, we would be lost. It’s a skill that we have to use all of the time. Through our persistent nature we develop perseverance. Steadfastness. When the wind is howling at our face, we continue on. There is no other choice. Some of the “toughest” people I know are fellow advocates. I’m in awe of their perseverance and drive to help others. 

I have learned SO much over these last 4 years, not only about myself, but more importantly about others. Things I never dreamed I would be a part of, like this week, speaking to legislators on important issues impacting the disabled community. Was it easy? No. Was it intimidating? Heck yes it was! Did I do a perfect job? No. Did I do my absolute best? Yes I did. I was a newbie and I survived my first virtual Summit and Hill Day with MDA. I made some mistakes to learn by, and if given the opportunity I will certainly be up for the challenge again.  

Humbly courageously pushing yourself outside of  your comfort zone is so rewarding. It forces you to grow in ways that you need to grow. Ways that further you along your purpose path. If we aren’t on this earth to help others when we can, I don’t really know why we are here. Sometimes we are the one who needs help, and when we aren’t in those times, we need to be the help for the someone who is. 💚

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