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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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Practice Makes Perfect-ish

Hello! Welcome to another week at Humbly Courageous. I’m glad you are here.

Living my life with a progressive muscle disease, I feel like I always need to be prepared for what may come next, concerning my physical wellbeing. I like to think steps ahead because for me, that is key to maintaining my independence. 

Throughout my life, I’ve slowly added assistive devices here and there. First the cane, then the rolling walker for around the house, the scooter and most recently my custom wheelchair. My most used is my cane when I’m out and about alone, and can’t hold onto someone. I also use my custom wheelchair sometimes around the house when I am becoming fatigued, or need to get heavier things from one part of the house to another that I cannot walk and carry. 

There are so many moving parts to any given day, and I like having options to help me be independent. My strength can vary quite a bit throughout the day. Some days, I’m considerably weaker than others, and that’s always unpredictable.

One thing I do to stay steps ahead is practice different household tasks from my wheelchair. I want to be prepared if ever I have to be in my wheelchair full-time, which is a very likely possibility, provided I live a long time and no treatment options become available. 


Doing laundry from my wheelchair is really tricky and doubles or triples the amount of time it takes compared to when I’m able to stand and do it. It’s much harder to reach into the dryer and get the clothes out, and pulling the laundry basket can be difficult to figure out. It’s all part of the process though of figuring this out ahead of time, so I’m ready and I don’t have to skip a beat. 

Cooking from my wheelchair provides many challenges. My kitchen is not designed for me to comfortably sit and chop or cook on the stove, but I’ve found some ways around that. There are some things that aren’t doable from my chair such as getting stuff out of upper cabinets.


Preparing like this gives me a peace of mind. It takes the panic out of the moments when I do have to be in my wheelchair most of the day. I still feel like I can be somewhat active, which I really need for my mental health.

When we built our home over 20 years ago, we made sure the doorways were wide enough for a wheelchair. However, if I were in my chair full-time we would definitely have to do some additional modifications to make things more accessible. 

For now, this seems like a good plan for me, and it really helps on those weaker days when I can’t be on my feet, to have practiced many things that I do around my home. 

It takes humble courage to face our realities with honesty. Sometimes looking into the future can be scary, and of course, no one truly knows what the future holds for them. Being prepared is a tool I use in many facets of my life living as a disabled person. It’s something that can help all of us. 💚

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

https://readthereporter.com/optimistic-much/


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