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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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A Walk To Remember

Hello and welcome back to Humbly Courageous. I’m glad you are here! It all started when my husband and I went on one of our anniversary “hikes”. We were married in the fall, which just so happens to be my favorite season. Almost like I planned it that way or something. 😊 I always love to get out in the woods to really get the full effect of the autumn leaves, which are just breathtaking right around our anniversary. 

A few years ago, my husband, my youngest son and myself had gone on a weekend getaway for his fall  break. I told them I wanted to try a short trail to try and push my body a bit to see where I was at. I was armed with my hiking sticks and I was ready for a short loop in the woods. About 3.5 miles later we finally exited the woods. Needless to say we got a bit more than we bargained for. Took a wrong turn, perhaps? It was a difficult hike to say the least, complete with stairs and all (stairs are my nemesis). I was completely and totally wiped out, and at the same time I was completely energized and planning the next year’s fall challenge! 

Since then, we have found “the big hill” as I named it. Clever, right?! The first time I did it, I used my hiking sticks. It’s a STEEP hill. The kind of steep that is scary if you ask me. The next time I did it, I ditched the sticks. Yikes. Talk about facing my fears. My husband documents these big hill challenges for me, so that I can always look back on them. Living with a progressive muscle disease, these climbs are a big deal on the hill! 


It really starts days before the actual climb. I get a thought that I want to give it another go, and until I do it, I can’t get it out of my head. Recently, it’s been following each of my stem cell treatments. My most recent a few weeks ago. 

When I was a little girl, I wore big heavy leg braces, so I could walk. Never knowing how long I would be able to walk. Doctors didn’t know. They told my parents things like, “probably not long”. Then, I had a lot of surgeries to fuse my ankles into place and release both achilles tendons and transfer tendons, and all that stuff. My ankles are a roadmap of the journey I’ve been on my whole life. A total of 10 big scars. I like them now. They are a reminder of where I’ve been. They are a reminder of the blood, sweat and tears just to keep walking. The privilege I still have of walking on my own two feet. Sometimes, I catch people staring at them, and I wonder what they are thinking. If they only knew the real story behind them. The years of pain and suffering behind those scars. The times of childhood missed out on. They tell a story. It wasn’t all for nothing though. It was all for something. Something great. 

I am so grateful for the abilities I have. So darn grateful. I’m grateful for the inner drive that I have to keep going. I wonder what I will do if that ever goes away, and I can no longer find it? That scares me. I think about it a lot. I don’t want it to go away. I won’t survive without it. I trust it will always be with me, in me, like it always has been. I hope I can always tap into that spirit of pushing past my limits at times. I hope I always get that rush of absolute joy and humble pride when I achieve something like the big hill climb. As a woman of faith, I’m confident I’m not getting there on my own physical strength. It wouldn’t make sense. Some days it’s all I can do to walk around my home. 

I hope that you too have a “big hill” type of challenge in  your life. Something you do from time to time to remind yourself that you are stronger than you think. To remind yourself that your mind is a powerful tool that can take you places you wouldn’t normally be able to. I think of that often when I watch my boys run, or think of my husband pushing my duo bike up mile long hills in the middle of a marathon. Their minds have to be strong to do those kinds of things. Things that defy any good explanation. In my opinion, runners are truly some of the best and most mentally strong athletes on the planet. I’ve had a lot of time to observe runners from my duo bike. It’s admirable. It’s fascinating to me.

Humble courage means getting comfortable with where you are, and accepting not knowing exactly where you are going. None of us do. That can be a scary thought, especially when it involves a disease that greedily takes what we value most. Our independence. It takes humble courage to keep moving forward, but we must. We have to keep on keeping on, proving to ourselves we can do really hard things. 💚



Comments

  1. Glad I found you and your article. It is inspiring seeing you sharing the most vulnerable parts of yourself. Thank you. Living with MD myself I cannot express with words how important it is to learn the journey of another. Sometimes we need a reminder that we are not alone.

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