Skip to main content

About Me

My photo
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.

Followers

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. 





 

 

 


Comments

Popular posts from this blog

In Luke’s words

Hello, welcome back to another week at Humbly Courageous. I am glad you are here! When my oldest son asked me to proofread his college essay a few years ago, I don’t think anything could have prepared me for what I would read. My biggest fear before having children, was that my life, my disability, would affect their lives in a negative way. I know what I endure as a disabled person on a regular basis, and for years I debated if I wanted to bring children into the world with me and potentially affect their lives in a bad way. After years of discussion with my husband, I finally felt like the decision was clear. I feel God put it on my heart, that He wanted me to have children. I felt that very strongly all of a sudden. As I went on the journey that Luke took me through in this essay, I felt many different emotions. I felt sad, mad, grateful, proud and so much more. I am sad/mad that the opinions and reactions of others caused us to miss out on these precious times with Luke. That part ...

Dear Muscular Dystrophy

A letter to Muscular Dystrophy on the eve of my 49th birthday. This has been a lifelong journey…. Dear Muscular Dystrophy, At times you dazzle me, showing me the heights of human love and kindness, and at other times you take me to the deepest, darkest parts of my soul. I have silently pleaded, please just let this end. I don’t want to do this anymore. I’d like to say that was a one-time thought, but you’ve made it impossible to tell that as a truth.  I want to love you because you are a part of me, but you make it so hard at times. You feel like a best friend when I achieve feats that seem impossible due to my physical weakness, but also you feel like my worst enemy living inside of my body when you fail me, and I’m once again lying on the floor. You robbed me of big chunks of childhood joy, while I sat in silent envy of my friends, as I watched them effortlessly turn cartwheels, run and jump.  You are stuck to me like glue during the countless hours in waiting rooms, operati...

Bracing For The Worst

Hi! Welcome to a new week at humbly courageous. I’m glad you are here.  It’s no wonder that I brace myself for the worst whenever I go out in public. Every single time. It’s no wonder because I have encountered the worst many times in my life. The unsolicited comments, the stares, the whispering, the avoidance, people turning away from me like I am a monster, the laughter of young kids, those who treat me as if I am invisible. I’ve seen and heard the worst. Many times.  Sometimes, I am brave enough to look up at a stranger coming towards me, not knowing if I’ll be met with a look of pity, a look of disgust, or a warm smile. More often than not, I regret looking up. Why do I care? I don’t know, it just hurts to see and feel that there are people who think that way I guess. A few weeks ago, I was at a writer’s conference with a friend. It was her first time pushing me in my wheelchair. The conference was at a university and lunch was in the student dining hall. Normally, during ...