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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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Dear Identity

Dear Identity,

I long to know you, to get comfortable with who you, are but you are ever changing, escaping from me just as I start to sync with you. 

Most of my life spent in an identity crisis, I longed to see you in focus.

Instead, you were blurry, unrecognizable.

Who even was I? I didn’t really know. 

You escaped me like a master thief most of my life. I pleaded to get a glimpse of you for forty-four, excruciatingly long years.

At each doctor’s appointment, an answer carrot recklessly dangled. The anticipation built.

Each time, a new hope was born. I wondered, would I finally see you out from the shadows where you comfortably lived?

Slippery, elusive I chased you with the ferocity of a raging addict trying to secure their next fix. 

I needed you. I didn’t understand why you didn’t need me.

I needed to know you to know me. That’s the way this life thing works.

Everyone around me was figuring their lives out. Making plans for their futures. 

I tried too, but I felt so unsettled. They weren’t looking for the same thing I was. 

It’s hard to plan for something when you don’t know what you are planning for. You just know it’s something.

The root of despair entrenched deeper into the ground.

I daydreamed of an ending to this madness.

I was unfinished. 

I met my maker halfway through the search. In a hallway, with a window at the end. The sun shone on the window seat where I was met with loving and open arms. It felt heavenly. 

Maybe I wasn’t as lost as I perceived myself to be. 

I felt some relief. 

The sharp edge of pain softened. 

Was there a reason for this life of uncertainty?

I continued on, trying to solve the riddle. The urge didn’t go away.

Was I one of a kind? The thought seemed ridiculous, selfish even, but I knew no one else just like me. 

My sticky uniqueness annoyed me. 

I could never shake it, but that didn’t stop me from trying. 

The fateful day that I finally met you, did not disappoint. 

I felt tingly and brand new. Like a rebirth of sorts. 

I had to temper my excitement, as I feared those around me would think I had lost my mind.

I wanted to jump up and down and scream, but I can’t jump. 

I settled for endless hours of grateful tears, alternating with smiles that overtook my face. 

I have known you for 6 years now.

Getting to know one another has been so lovely.

Now that I know you, I realize your nature is ever changing. 

The uncertainty still there, but different.

The difference is that now we are changing together. We don’t have to be alone. 

Maybe you needed me as much as I needed you.

I believe you were trying to find your way to me too.

Perhaps, your smile was as big as mine on that fateful day. 





 

 

 


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