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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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Acceptance

Acceptance, that is the word I am choosing to focus on this year. It's definitely a word I have wrestled with most of my life. What I have trouble with accepting is that my mind, which is not disabled as my body is, would like to do all these wonderful active things. Exercising, deep cleaning (yes, I'm kind of weird!), long walks in the woods, difficult hikes, organizing, cooking for hours and so on. I find it interesting that my body longs to do a lot of things that it may never do, unless there is a cure for my unlabeled disease. Not highly likely.

 I struggle with accepting that this likely won't change, and that my disease paired with my aging body will make these things even more unlikely. I struggle with accepting the daily anger, frustration and heart wrenching sadness that this reality brings about. I struggle with feelings that maybe I'm just not pushing myself hard enough. Maybe I should be more tough, and more adventurous. I struggle with the thought that others will think I'm just lazy. The problem with this is that when a body is disabled and has specific limitations, pushing harder doesn't mean that I will eventually get there. What it means for me is that I could fall and break my hip because of severe osteoporosis and become even more disabled, and it means complete and total exhaustion of my body for days after. How do I know? I know because I have tested this theory many, many, many times over the course of my lifetime.

The truth is, I have a reality, and it's a reality that I can't change. What I can change is my attitude, and the way that I choose to see myself.  I can accept myself, limitations and all just as I am. I don't need to prove myself to anyone. What I need to do is truly, fully and completely accept myself.  Then I can have new dreams and goals. I can do things nonphysical, or physical with alterations (i.e., long rides in nature on my scooter, exercises designed for me) where I CAN push myself and grow, and do things that seem impossible.

My goal for the year is to FINALLY shine a light on my abilities that I do have, and stop slamming myself and my self worth into a brick wall. Will it be easy? NO! It will go against how I have always lived. Trying to live the life of an able bodied person who is not. That is just self destructive and would never promote a healthy self esteem. I am fortunate to have a family that accepts me ,and loves me for who I am. The truth is that we all need to accept ourselves, able bodied or not. We were all designed for a specific purpose, and this year I hope to figure that out more.  I want to strive to be that person, not some fantasy that my mind has created, but my TRUE self with honest expectations.

Comments

  1. I'm so happy to read this and love your new outlook on acceptance. It is my goal to continue to help you realize your goals and make the most of our blessed lives together.

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