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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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The Enemy Within

Hello and welcome to a new week at Humbly Courageous. I am so glad you are here. 

Every day when I wake up, it’s like I am waking up to the enemy within. I instantly know, I will again be in for a day of fighting for my physical well being and safety. This is how it’s been for my entire existence.


Some days the thought is, ok, let’s do this! Other days its, here we go again, this is going to be a long day. Perhaps most of us feel that way for one reason or another, depending on our life circumstances. It’s not a feeling reserved for the disabled, that is just my perspective as ONE disabled person. 

Sometimes, it feels as though it’s a stranger living inside my body wreaking havoc. After 50 years, it’s definitely worn out its welcome here. But, as we all know, some things are simply out of our control.

Other days, I can settle in, and look for what my disability is teaching me in this life. I promise, there are some really valuable life lessons living in a disabled body. Truly, a unique perspective that I have learned to appreciate on the good days. I even look forward to what I will learn in the future from my perspective.

Each time I get the opportunity to listen to another person with Muscular Dystrophy speak from their heart, I am reminded that my thoughts are valid. Living in a world where I am not in communication with those living with similar struggles on a daily basis, it’s easy to make up stories in my mind.  Some common thoughts are, “am I just not tough enough?”, “I am probably the only one upset by these trivial things I cannot do”, “ I should make more of an effort to push myself more”. As I am writing this, I’m thinking, why am I so unkind to myself? I would never talk to someone else who was suffering in this way.  

Hearing others, who live lives parallel to mine, speak of struggling with some of the exact things I do, is validating. It feels like I can exhale knowing that I am not losing my mind. This life with physical challenges is, in fact, as tough as it feels to me.

It can also be very motivating and enlightening to learn from those same people. There truly is strength in our communities.

When you go back to your reality though, those  encouraging thoughts can fade away, and you feel isolated again. I have to fight the tendency to want to isolate in my safe space. Not wanting to face feeling so misunderstood. It is devastating at times. 

Last week, I was visiting my son Luke at Purdue. We had parked in an accessible spot. He and his girlfriend were in the back of the car unloading my wheelchair, and I was still sitting in the front seat. I looked up to see a man giving me “the look”. The look I’ve seen countless times. The look that says, you are scum parking in a spot you don’t belong in, my tag clearly displayed. He wasn’t budging. He stood in front of the car crossed his arms and glared at me. I’m never in the mood for this type of aggression, but I particularly wasn’t that day. I glared back and lifted my hands as if to say, “what’s the issue?” He walked away just as Luke came around with my wheelchair. I don’t know if he ever saw me get in my wheelchair or not. 

The enemy within, stoked to burn brighter. The enemy becomes much more than a physical enemy, the mental enemy can beat you down, rendering you speechless.

It is those scenarios that make fighting the enemy within even more difficult. It’s inevitable, I am always going to be faced with those types of aggressive encounters.

It’s going to take every ounce of humble courage I have to keep rising to face the enemy within. Many days that thought overtakes me. The fight is constant, and the urge to find new ways to fight it will be my focus. 

Today, I remind myself that I am strong because I am weak. Today was a good day. 💚

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