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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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Waiting on Gratitude

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

For the majority of my life, I was waiting. Waiting on things to get better, waiting on answers, waiting for a treatment, a release from the prison of my disability. I was waiting on a time when my body could catch up with my mind. To be able to achieve the things I wanted to. Just because a person is disabled doesn't mean we don't still daydream about all the things we wish our bodies could accomplish. I spend a good deal of time daydreaming about what the physical achievements would look like if I could actually get there. Coming back down to reality stinks. I suppose the heart longs for things it can't have. 

I've entered into the year I will turn 50 years old. What?! How can that be, I think, like everyone else. Where has the time gone? Feelings of regret, an urgent feeling to accomplish things is what I'm sometimes feeling these days. Maybe I haven't done enough before turning 50? Midlife crisis incoming? My mind drifts to the time when my parents were told I may never walk, and if I did it wouldn’t be for long. Now look at me, still walking. The places I've been, the things I've experienced, people's lives that I have had the privilege of touching. Maybe I have done enough, but as long as we are earthbound and able, we should be doing, helping where we can.

For so long, I was waiting for gratitude. For that big moment to come and sweep me off my feet. The moment I get to that mountain top where I know everything will be ok. Then, I would be grateful. I have envisioned a healed body thousands of times throughout my life, bitterness sometimes creeping in alongside those thoughts. Wasting time where all along I could have felt joy, gratitude. It’s true that we don’t appreciate our youthfulness in the moment. Older folks would tell me 50 is young. Maybe I should listen. Take time to stop and smell the roses, and  uncover the beauty that lies within in the pain. Maybe the pain is what makes beautiful things so much brighter?


My reality is just that, my reality. There is a very good chance that on this earth I will never get to experience life in a body that isn't disabled. Some days, that thought wrecks me. Other days, I am able to accept that. I can't spend my time just waiting to accept gratitude. I need to be thankful for where I am. Not after all that my body has allowed me to accomplish. These are likely the good old days for me, right here and now.

I recently ran across a baby picture of myself. I stared at my tiny feet and thought to myself, wow, those feet had such a long way to travel, and would go through so much pain. No one knew that at the time that picture was taken. It felt weird to look at that picture and compare it with my life’s experiences. I thought about the bombshell that would soon be dropped on my parents. In the picture, my dad was holding me. He didn't know what was coming. I felt bad for him when I looked at that picture. It made me so sad.

We don't know what is around the corner for us, good or bad. It’s easy to get distracted by thoughts of what's to come, often causing us to miss the moment of the present. It takes humble courage to appreciate life as it is sometimes. Maybe these are my best days. I shouldn't waste them letting gratitude slip away. Maybe you shouldn’t either.💚


For more on my story, you can find me on Instagram @ashinneman. Check out my weekly column “Disability in the City” in The Hamilton County Reporter. 

Comments

  1. After reading many of your articles, I realize that I have some of the same problems you have and it is incredible of how you find ways to work these problems out. I have arthritis that puts me in your position such as falling down or worrying about being bumped in large crowds. What prompted me to visit your site was your last story about going out a door that opened the opposite way. I use doors to stabilize me and almost fell out the door backward because someone opened it not knowing I could fall out but I was holding onto a shopping cart, thank goodness. I felt the pain of your story when you could not get up and only an older couple offered to help and then the restaurant owner yelled at you for letting air conditioning out of the building. Why did he not help you up is beyond me. I would have helped you up or quickly found some one to help. Thank you for sharing your stories of being disabled. These stories of mental and physical challenges of being disabled are needed to educate the public.

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