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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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Hello and welcome back! I recently headed out to the grocery store to get a few items we needed for Thanksgiving dinner. I was about 5 days into my recovery from my recent sinus surgery. I was starting to get some strength back and thought I was up for a quick trip to a small grocery store nearby. 

Thankful for my family!

I parked my car. It was crowded, so I didn’t get as close of a spot as I was hoping for. Instantly, I regretted my decision to get out on my own. If you are new here, I live with Bethlem Myopathy which is a form of Muscular Dystrophy. Up until about 2017, I was mostly ambulatory except for times after surgeries when I would need assistive devices while I recovered. It started with my using a cane, and then I was gifted a scooter which helped me to be able to travel easier and do more things that required a lot of walking. Since 2017 I’ve had to use my scooter more and more as I age and the disease progresses. Fortunately, I’m still able to walk while at home and on smaller outings that don’t require a lot of walking. 


So, back to the grocery trip. I took a deep breath and prayed I’d be able to stay on my feet. I personally have to psych myself up before I go into any store or public place, especially on my own. I have to brace myself physically and mentally. I get knocked off balance SO easily. I don’t know why I continue to do these things that cause me so much anxiety. I guess I’m just clinging to my independence as long as I can. I have people who would help me, but it makes me feel good to accomplish things on my own, and I plan to do that as long as I can. 

I got out of my car, and started to walk, one foot in front of the other. I briefly looked up and saw a woman staring at me, but I have to walk with my head down, so I don’t trip, so I quickly looked back down. I was very focused on getting to a cart, so I could lean on that. The next thing I know this lady was saying,” here you go”, and she had brought a cart to me. I thanked her profusely. She smiled and told me to have a good day. It warmed my heart to know that there are strangers out there willing to help. The truth was, I had misjudged my strength level, and I really wasn’t as strong as I thought I’d be that day. However, it takes a lot for me to admit defeat so I wasn’t about to turn around and go home. Her act of kindness saved the day for me. 

I guess I share this story because I want to help you understand what it’s like to live with muscle weakness and try to accomplish everyday activities. It’s not easy. It not only takes physical effort, but also extreme mental concentration. Each step requires thought if you don’t want to face plant, and sometimes even that’s not enough.You have to account for the people around you who don’t know that you can’t just quickly step to the side to get out of their way. It takes a minute because I don’t move in the same way. My feet don’t quickly shuffle. It’s hard to explain. 

I want to keep doing independent trips to the store. I appreciate these trips each time I safely get back to my car. I thank God for giving me strength to do that. 

This Thanksgiving week, I’m thankful for the stranger at the grocery store who humbly courageously went out of her way to offer help to me. I will keep writing about the way my muscle weakness affects me. In the past week, I’ve had three people tell me that through this blog they have learned so much about disabilities. That makes me happy. I want to help others understand, from my perspective, what it’s like to live with a lifelong disability. See you next week! 💚



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