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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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Staying Gracious

Hello, and welcome back, if you are a new reader I’m glad you are here. My hope is that in reading this you feel seen or heard if you are living with a disability, or if you aren’t, maybe you will learn something about disabilities that you didn’t know. I’ve lived 48 years with Muscular Dystrophy, and I like to think I’m an expert in the sense that I am a seasoned veteran and have a lot of experiences to share. 

Gracious as defined by Miriam Webster is marked by kindness and courtesy. Always something to strive to be, gracious. As someone who gets a lot of comments when I go out in public, I’m not always in the mood to be  gracious. I want to represent people living with disabilities in a positive light. I really do. 

I think it is important to educate when the opportunity presents itself, but I’m just not always in a mind space to do so. 

Whenever I go out in public in my scooter I get a lot of unsolicited comments. The other night at my son’s graduation here are some things I heard. “Wow, wish I had one of those”, “are you going to pull that thing in forwards, or do you even know how to back it up?”, “you’re too young to be in that!” Sometimes I laugh, sometimes I don’t make eye contact, sometimes I go into detail and explain. 


I can’t stop these comments. They just happen. These people don’t know me. They don’t know that I’ve had a lifetime of of ignorant comments coming at me, and that some days I’m on the verge of cracking if I hear another “you’re too young for that” comment. But, I should be gracious. I should not take it so personally, and realize a lot of times people are joking, and probably just want to make conversation. It’s hard to do though. I find myself not wanting to go out as much. Because I just don’t want to deal with it. I’ve talked a lot about my physical scars all over my ankles and a few other places on my body. I have mental scars too from very unkind, unprovoked comments people have made. Each time I go out, I have to brace myself, and when someone says something unpleasant, the scars become open wounds again. Wounds  that have to be healed over and over. Words hurt. 

However, I am determined to not become bitter. I want to do better. I want to humbly courageously walk graciously alongside my disability. I don’t want those comments to stick with me for days. I want to let them roll off my back. Not get in my head. I’m human though, and all I can do is keep trying to do better. 💚

Comments

  1. AnonymousJune 11, 2022 at 11:25 AM

    Great advice. You are right, most people are trying to make light of the situation. Our buttons get pushed when kids stare at our daughter in church. I've turned it into a game with my teenage son. We crack up because we know what we are both thinking, "Turn around kid! Nothing to see here!" I can't wait to read more and thank you for sharing Amy! You are truly changing perceptions with your posts. Have a great summer and congratulations Madam Ambassador! 👏👏👏👏👏

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