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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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Cloaked In Shame

Hello! I’m glad you joined me this week at Humbly Courageous. Life has felt like a whirlwind lately. I am wrapping up my time as National Ambassador for the Muscular Dystrophy Association. The last two years have been so incredible for me, and I’m so grateful for the opportunity. In the meantime, I’ve started to look forward for my next way that I will continue to spread awareness and help educate others on disabilities. Good things are coming!

For much of my life, I wore a heavy cloak of shame. I couldn’t shake it. Even if I was successful in ridding myself of it for a short period of time, I would encounter someone in public that would give me a condescending stare or rude comment, and there it was enveloping me again. I was ashamed of my disability. Embarrassed by it. Loathed it. Tried my best to separate myself from….well, myself. I felt like if I could fix this one thing then everything would suddenly be perfect. All my troubles erased. In my mind, it was THE cause of everything that went wrong in my life. I prayed nightly to wake up healed the next day. I really believed that would happen. It obviously didn’t. 

What did happen, is that as I got older I started to realize there were other parts of myself that I could use to make others more comfortable around me. One thing about me is that I LOVE to laugh. I love to make others laugh and I love to laugh at stupid, silly things. I quickly realized that humor was a great tool to help those who were hesitant to befriend the disabled girl, to feel more comfortable. They realized I wasn’t so different from them, and in turn, I realized that too. Win, win. 

Another way that I connected with others outside of my disability, was that I was a good listener, and a friend to all the different groups of people. I had an ability to connect with so many different kinds of people. I discovered that my disability actually made me approachable and relatable, in the sense that those who were having troubles felt comfortable sharing with me because it was outwardly obvious that I had struggles too. I always really liked that part about myself. It made me feel a little less alone, and actually served as a spark of passion for my career in social services.

Still though, for a very long time, I lugged that heavy cloak of shame around, wishing things were different. I wished my legs were strong and beautiful like many of my classmates. I wished I didn’t have so many scars, or missed so much school and time with my friends because of surgeries and rehabilitation. I was ashamed of my true self. It was dark and lonely under that cloak. That makes me really sad to think about. 

When I had children and they became an age where they too would struggle with self-image (who doesn’t?) I found myself encouraging them to embrace their differences. As I would tell them this, inwardly I felt like a huge hypocrite. I knew that I certainly wasn’t doing that, so why would I expect them to? That’s when I knew I needed to try and lose the cloak of shame for good. It hasn’t been easy. It’s a journey of shedding it and then unwantedly lugging the weight of it around again. However, I was determined to shed it. I wanted to be an example for my boys of what confidence in the face of adversity looks like. I wanted to be “strong” for them. 


My kids have witnessed my struggle to lose the cloak of shame. They have seen in real time what my insecurities look like when someone shames me in public because of my disability. But, they have also seen me continue to rise above the criticism and opinions of others. They’ve seen me hold my head high and continue on in a world not designed for me, where I face obstacles at seemingly every turn. 

These last two years, as I stood and represented our country as the National Ambassador for the MDA, my cloak of shame has been discarded, burned and replaced by a cloak of progress in accepting myself just as I am. Not wishing I was someone else, but realizing that who I am matters. It matters because who I am, can help others see that they too can shed the cloak of shame and step into the lightweight feeling of the cloak of confidence. Now, I often see my disability as something that has made so many things in my life beautiful. So many beautiful, wonderful experiences and people have come to me because of my disability. 

There is no question that living life with a physical disability that greatly impacts your daily life is extremely difficult. It causes many difficulties, sadness and frustration. It takes humble courage to look further into hardships, and dig to uncover the treasure in it. It may take years. Decades. It’s there though. Underneath the shame is beauty and goodness. 💚

Comments

  1. I know you have helped more people than you will ever know. We are very proud of you ❤️❤️

    ReplyDelete
  2. There’s no question that prayer by all of us has helped you overcome the obstacles that you have faced. ❤️

    ReplyDelete
  3. You are beauty and goodness and courage. I love these posts. They're like letters to us, yet letters to yourself. Wonderful. I'll message you through FB also bc this is showing me as anonymous here.

    ReplyDelete

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