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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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It’s Not Fair!

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

A common phrase I used growing up was , “it’s not fair”! I’m willing to bet we’ve all used that at one time or another in our lives. I mean it’s true. Life’s not fair. That phrase of course has millions of different meanings to different people. 

As a disabled kid, it was hard not to feel that on a daily basis. Seeing other kids so carefree and seemingly without a worry in the world. When we are young, we often don’t understand that struggle isn’t always shown outwardly. In my young mind, I didn’t see anyone else physically struggling like I did, which lead to those feelings of isolation. I often thought, “it’s not fair”, and I wasn’t wrong.

Living with a disability it’s a constant battle, physically and mentally. Each day, you run across many things that humble you, frustrate you and often anger you when faced with injustices that those living with disabilities often face, due to the lack of accessibility or understanding of society.

There are just some things in life that we can’t immediately resolve, or ever resolve. Accepting that can be really painful, and it does often feel so unfair. Many times those not fair moments in life are fleeting and they pass, but what if they don’t? What if it’s a forever unfair? Like a lifelong disability. 


It’s taken me a long time to say this, but I think for those unfair things in life that are long term, the only way to live well with it is to look at it a different way. What is it teaching me? How am I being shaped by this? How can I use it to help others? Speaking from my point of view, living with a rare disease that has no treatment or cure, I have two choices. I can let it make me miserable (and yes sometimes I definitely do) or I can try to find joy right where I am. It’s there. I have to choose to feel it or not.

Holding a grudge and digging my heels in face to face with a situation I can’t change isn’t the easy way. I used to think it was. It sucks the absolute life out of a person, and it’s a miserable existence. It’s a vicious cycle of bitterness, anger, frustration and resentment. Digging for small nuggets of joy is much easier. Once you start uncovering a few, you find that they just keep popping up. Soon, everywhere you turn, you will see simple moments that are so beautiful. That can be in the form of people, simple pleasures in life, connecting to your faith or whatever. The possibilities are endless really. 

Accepting and living well with an unfair situation takes humble courage. It’s never going to be perfect, you will still have days and times of being in the dumps. Like when I lose another physical ability to this greedy disease. It takes time to accept that. Grace. Give it to others and don’t forget to give it to yourself too. 

I want to close out with a quick story that just really tugged at my heartstrings. I was finished grocery shopping yesterday and I walked out of the store. I had one bag in my cart. I tested it to see if I thought I could carry it the few steps to my car. I decided it was too heavy, which meant I’d have to unload it and then walk the cart back up to put it away. I am always trying to avoid extra steps to preserve precious energy. Out of the corner of my eye, I saw a man watching me. Not in a judgmental way, but I could tell he was deciding if he would offer help. I took the cart to my car, and unloaded my heavy bag. He came around to the back of my car and offered to take my cart. His eyes were so kind they pierced my soul. Sounds extreme, but they did. For a moment I was speechless. I thanked him for helping me and, as always, I tell the person how helpful it is to be asked that. Sometimes, I get the feeling that people are placed in the right place at the right time, and these are special people. I don’t often forget the faces of the strangers who offer help. We just never know how far a simple act of kindness can go. 💚

For more on my story follow me on Instagram @ashinneman. Check out my weekly column “Disability in the City” in the Hamilton County Reporter. 


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