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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 Can See It

Hello and welcome to a new week at Humbly Courageous. It seems that with my other writing responsibilities, the blog has taken somewhat of a backseat, but make no mistake, it is still my first writing love.

I have these visions. Visions of myself in a healed body doing things that I can’t typically do. It feels like a retreat from my tired body to daydream about these things. Many times it’s just thinking about doing household chores without such effort. Sometimes they are just snapshots and other times I find myself lost in those thoughts. 

I would think most have daydreams about doing things that they can’t do, but I guess I really don’t know. I’ve never had that conversation with anyone that I can remember. 


One thing that I’ve noticed that I believe has slightly improved is that I don’t anger as easily when I’m not physically able to do something. Not to say that never happens, especially when I’m tired, I tend to get really frustrated easily. I’m learning to pause, take a breath and give myself some grace. I’m learning that sometimes I just have to walk away and accept that I tried my best. I don’t give up easily.

If someone is around, I am asking for help more. If I refocus and come back to something, often times I’m able to achieve the physical task I set out to do. Maybe I’ve brainstormed a different way to do it, or revisited it when I wasn’t as depleted. My strength always starts out stronger in the morning hours and then quickly wanes as the day goes on. It’s a big difference. Evenings are hard. 

My brain works at a really fast pace and has many desires and ideas. Slowing my brain down to match the speed of my body is hard because the gap is huge. 

I can feel angry and frustrated a lot. The kind of anger you feel deep inside your body. The kind that feels like at any moment it may completely take over. That kind of anger is really hard to reign in. I’m learning though. Because I don’t want to feel that anger so often, and these moments present themselves countless times throughout my day. 

No one teaches one how to say goodbye to physical abilities. It just happens when living with a muscle deteriorating disease. One day you just notice, huh, I could do that yesterday, but today, not so much. Those little things, I can tell you, are very hard to let go. Because they add up, and suddenly they become bigger chunks of things that you can no longer achieve. The guilt I feel when I have to push another task onto my husband that I used to do, is heavy. It is frequent grieving, often alone. It’s hard.

I recently posted on social media some thoughts about though my physical strength may be fading, it just means that I need to spend more time and be more diligent about “exercising” my mental strength. I think it is a good thing for all of us to do. After all, if you live long enough, your body will start to break down too. As a human, that is inevitable. 

Spending time alone, with my thoughts, can be painful. It’s really hard for me to fully go to that place. It’s strange. When thinking about my declining body I often feel like I am thinking of someone else. It doesn’t seem real in some ways. Then I realize, it is in fact, me. That likely makes me sound completely delusional to many reading this. I’m guessing many of my friends with MD can relate.

It can take humble courage to be able to let anger go when you feel it so deeply. It’s such a familiar place for me that it, ironically, almost seems comforting. Letting go means stepping outside of my comfort zone and refocusing. Doing that mental weight lifting. Just as I always say, one day at a time. Don’t try and look too far ahead. Just get through today. 💚

Check out my weekly column “Disability in the City” in The Hamilton County Reporter. https://readthereporter.com/adapt-to-find-your-passion/


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