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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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Not Again!

Hello and welcome back, or if you are new here glad you stopped by! Is there something in your life that has happened to you since the beginning that you dread each time it happens? Something you wish would go away, but yet it keeps recurring? Something that causes you anxiety each time you think about it happening because you think it may be worse than the last time it happened? For me, it is falling. I don't have a time in my life where I can remember that falling wasn't a worry in my life. 

When I was very little, I would trip and always fall hard straight on my knees. I remember one incident when my friend and I were just walking into school, you know, just trying to fit in, middle school ha! Doing my best to "blend" in with my very awkward gait. All of a sudden, my toe caught on the waxy floor and down I went, flat on my face. I was wearing a matching pink shirt and pants with white tennis shoes, it was raining that day. Vivid memory. I was devastated, and sad. Throughout the years, as I've talked about before, falls have been a normal part of life. 

I also remember a time when Luke had two friends over and I was pregnant with Jack. I had allowed him to have friends over because I felt up to it that day. They were happily sitting in the family room watching a movie, and I thought it would be fun to bring them a little snack for the movie. As I was walking in to give it to them, I tripped and fell. I felt so inadequate as a mother in that moment. Just a very honest thought. I wondered what they must be thinking about Luke's mom! I wondered what Luke was thinking. Was he worried, did it scare him, was he embarrassed, or maybe all of the above? Getting up is hard too, so that is always a scene. Plus, I was very pregnant, what a sight! I'm guessing I made a bigger deal of it in my head than it was. Maybe I should have thought to myself, well this is a teaching moment, or I'm proud of myself for getting back up and continuing on. 

I was all set to give my latest speech with MDA this past weekend at the Burn Boot Camp, Be Their Muscle event. It was the day before, and I had everything written out, and had read through it a few times. I was feeling good and excited, confident even. I had washed Luke's sheets and in my crazy sentimental brain, I thought....I should make his bed up for him. He's leaving for college in two weeks, and I want him to know he's loved and cared for, and I like to do nice things like that for my family. It's a twin bed, so it shouldn't be that difficult. I got the first corner on, and then had to lean over to put the far corner on. I felt the rug slipping and thought to myself, oh yeah, I remember it does that, I need to be careful so I don't fall. Nice recovery, I thought! I took a step to the side and without warning, I fell over in one swift movement on my left side banging my hip, shoulder and head as I went down. Oddly enough, I immediately thought, OK, I didn't break my hip so my bones must be doing better, and also thought that's why God gave me some extra cushioning around my hips, to protect me. Then, fear quickly followed by tears and humiliation. Disappointment in myself that I had been so careless. 

The confidence I may have been feeling was erased and immediately replaced by feelings of inadequacy. I just wanted to make his bed for him, and I had failed. I finally got myself up, and made my way to the freezer where I fetched some ice packs, grabbed two ibuprofen to get ahead of the pain that was starting to settle in, and sat down to call my husband. I always dread making that call to whoever is on the receiving end of it. I'm sure it's not fun for them. After knowing me for nearly 33 years, he knows what to say, and how to talk me out of that low spot. I said to him, "how am I supposed to go and speak tomorrow when I feel this defeated?" After a fall it takes me a bit to feel confident in myself again. He said, "just tell the story." So, I started thinking, yes he's right. Just talk about it. It's real life for many who are still walking with Muscular Dystrophy, and it is a big part of my story. Then I thought, yeah I've fallen countless times over the last 48 years. Who even knows how many times? Also, all of those times, I got back up. I kept going. Sometimes, I kept going after fracturing a bone, or whatever injury it was. Sometimes, to keep going it meant getting up and facing the day when I felt too weak to stand. It meant facing my fear and getting back on my feet again because I was fortunate enough to be able to do it. 



So, I rested, iced and got up the next day with a different attitude. I delivered the speech to an audience full of caring, kind and encouraging people. They had a hard workout to do after my speech, and I was able to ride my scooter around and cheer them on. That made me feel good. I saw how hard they too were working, and pushing themselves, using their abilities. I loved seeing all of the different levels of fitness at that event. I got teary eyed several times behind my cheery yellow sunglasses. I felt proud of them, and they were all there because they cared. It was touching. It was just what I needed. I connected with a couple others who have Muscular Dystrophy in their families too. I feel alive when I can do that. I think that's why I'm here. 


It took humble courage to rise and face a crowd the day after being so low and feeling so defeated. I left there that day feeling such a great energy, and for sure had a little extra pep in my step. Their energy was contagious! 


I ran across a quote last night from Emily Dickinson, and I felt so connected to it. It says, "If I can stop one heart from breaking, I shall not live in vain; if I can ease one life from aching, or cool one pain, I shall not live in vain." I believe we often become the person we needed the most at one time in our life. I feel so grateful to be that someone for somebody. I got a message from the mom of a 15 year old girl last week who also lives with Bethlem Myopathy. I always get a lump in my throat when I receive a message like that from a girl around that age. That's when I needed someone like me the most. I'm looking forward to chatting with my new friend and her family soon. 💚

Comments

  1. You are such a great model for your cause you have been there so you can speak from the heart and that means so much

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