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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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I Just Wanna Stay

Hello, welcome to a new week at Humbly Courageous! I’m so glad you are here.

I love going to the movies. Anyone else? It’s an instant dopamine boost. It’s dim, comfortable and I’m warm, wrapped up in a few layers and eating a favorite movie snack. What could be better?!

I often find myself in that moment wishing I could stay there forever. Wouldn’t life be so much easier if we could stay in our perfect movie scene and never leave?  


Or, how about when your mind wanders to a beautiful memory of the past and you are so close to that memory that you can hear it, feel it. I love that. I think to myself, I just want to stay here forever and not face some of my realities. I admit, I’m a nostalgiaholic.

My boys are so grown up. I’ve  got one a junior in college and my baby boy is a senior in high school. Just the thought of him leaving brings immediate tears to my eyes. My goodness, time is truly a thief. There is nothing within our humanly power to stop it. Most of us moms would love just one more day with our littles. Now that our kids are growing up, we realize those younger years were times to truly cherish. Hard to grasp that when you’re in the middle of the chaos. 

As I watched my college boy drive away a few days ago, I just stood still and watched him go, until I could no longer see his car. I had already apologized for the tears as he wrapped me in his grown boy arms for one last goodbye hug before he left. I wanted to keep him there, safe forever. (Those adult kid hugs aren’t so bad!) I felt foolish for having told myself, “I won’t cry this year”. 

I often think to myself, these are the good days with my disease. “Remember these times”, I tell myself. I replay my recent visit with my neurologist when he explained to me that with weakness like mine, along with my disease, the little strength left in my legs could take a sudden downturn at any time. I sat frozen in fear as he said those words, slightly regretting the choice to go alone to that visit. But, also grateful none of my loved ones was there to see my breakdown once I reached the safe space of my car. It felt appropriate to handle that one alone, initially. Now, every day I’m even more grateful to be standing as much as I can and walking. 

I just want to stay in this “movie moment” where things are ok. My loved ones are safe, I’m still on my own two feet a lot of the time, my baby boy is still living at home. It all feels so safe. It’s not perfect, but it’s as close as it ever could be I suppose.

But, as much as I wish for that, it’s not the reality of life. I can’t control when/if that sudden decrease in strength comes. I pray it never will, but I also know that some days it feels scarily close. The odds are stacked against me. 

I will take all the standing pictures and videos of me walking, so I may never forget what that looked like if things change. I will be able to go back and have my nostalgic moment if I need to. While I don't think it’s good to live in the past, missing life’s current moments, I think a visit every now and then to the good parts is good for the soul. It inspires me to create more good memories.

Adaptive waterskiing day, definitely a favorite memory! 

I’ve fought my entire life just to keep walking. From my heavy metal leg braces, countless surgeries, rehabs, often missing out on my childhood due to these things. I’ve paid a hefty price. That’s why it’s so valuable to me. If you’d trained relentlessly for 50 years for something, you wouldn’t want to let it go either. You’d cling to it with your life. 

Humble courage. Facing life when the odds are stacked against you. It’s not easy. But I can’t help but wonder… given my situation, is it a gift because I’m so hyper appreciative of what I do have? Maybe so. Maybe it’s a blessing in disguise.💚

Check out my weekly column, “Disability in the City” in The Hamilton County Reporter.

https://readthereporter.com/mrs-b/


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