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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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Uncertainty Breeds Urgency

Hello and welcome to another week at Humbly Courageous. I'm so glad you are here!

Most of my life, I lived with a huge cloud of uncertainty hanging over me. Living with a disease that is nameless is a very heavy weight to carry. Not knowing, is hard. It's frustrating. It's hard to ignore. It's pressing. It creates a huge sense of urgency at all times. The stress of carrying that weight is enormous. Crushing.

It's not like I had a handbook on how to handle all of that uncertainty. There was no one to tell me how long it would last, or how to handle the longevity of it. 44 years. It's a long time. Not knowing what was coming around the corner, provoked a lot of anxiety. I would say that it's scary especially as a child, but it's just as scary living with that as an adult. It didn't get easier. 

Learning to live with that uncertainty while everything else around me was going on as normal, was isolating. I was chained to this uncertainty, its grip like a vice. It held me back. It consumed me. There was not one person in the world I could talk to that would completely understand. I learned to keep it to myself because I was disappointed when I finally tried expressing how heavy this weight felt. I was met with an attempt at a comfort the person listening couldn't possibly provide, through no fault of their own. It left me feeling more broken. 

Perhaps you are in a space similar to the one I describe. You are living with uncertainty and directlly beneath the surface is a sense of urgency that you can't escape. You've also tried explaining this feeling to others who just don't understand. 

The lasting consequences of living with uncertainty that lasted nearly a lifetime, have been hard to reverse. It created a need within me to control everything else in my life. If something didn't happen the way I thought it would, or had planned for it to, I fell apart. I felt like a failure. It was a vicious cycle. 

To be honest, the need to try and control everything still lives within me. It's something that I have to fight everyday. I now understand that is mostly a losing battle. Thinking we are in control of everything that goes on in our lives, is one of life's biggest false senses of security.

Feeling secure is something I chased after. I never felt complete without a diagnosis, and therefore, internally, I constantly felt a lack of security within my own skin. It was silent torture for a very very long time. 

Now that I am not living with that uncertainty of living without a diagnosis, I feel lighter. I feel more complete. However, not much has changed as far as my disease. I still do not have any control of how it takes over my body as it chooses. There are things I do to stay my healthiest self, but they don't fix things. 

The grounding force in my life is my faith. It has slowly healed me, and leaning on it has taught me that life is full of uncertainty, but with faith you don't have to feel lost or be undone by the uncertainty. 


Life is uncertain. We are not in control of what happens next. We have to let go of the need to control everything in our lives. Letting go of that is one of the hardest things I've ever done. Like I said, it's a constant battle, but as with everything, practice makes me better at it. 

Living life humbly courageously isn't easy. Facing the tough things in our lives is always going to be something as humans we have to face. My best advice is to give yourself grace, and if you stumble, then regroup and get back up and keep going.💚

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

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