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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 Disability

Dear Disability,

Half a century. That’s how long I’ve been on this earth with you. That boggles my mind. I’m angry. I’m grateful.



The childhood memories with you become more of a blur with each passing year. The bullying you invited in just by being you. The insecurities that slowly took root deep inside my bones. The wonderful friends who didn’t care about how you made me walk. 

Sometimes, if I’m lucky, I have a flash of days gone by, and I’m transported to the moment. The sounds, the smells, the sense of comfort if it’s a good memory. Other days, I’m not so lucky. The anxiety, the trauma, also mixed with the sounds and smells that haunt me from the bad memories.

Dare I say, no soul survives 50 years without some deep wounds from something. Mine is no different. Wounded, scarred, blessed, all because of you. You are good and awful all at once, making my head spin. You are a master at bringing out the very best in people, as well as the very worst.

I’ve often wondered why each of my 50 years has been riddled with you. To describe you simply as “hard” seems like such an injustice to these years, to you. I can’t think of a word that accurately describes what it has been like to always live with you. Maybe you need a new word all for your own?

Physical ease has always been out of reach because of you. I admire it from afar. Quietly coveting the ease I see in others. Often, closing my eyes and imagining it. Telling no one how often these thoughts invade my brain.

If I had a day to escape you, I once thought I’d go out and run a marathon in my temporarily healed body. But no. Now, I’d settle for a skip up a flight of stairs. A simple, peaceful hike in nature. A day to go back in time, and effortlessly lift my babies up towards the sky, spinning them round and round, while meticulously memorizing the sounds of their squealing laughter. 

But, we are running out of time for any hope of moments like those. Now, you have met your match with the thing called aging. Because of you, the process is accelerated. The natural deterioration no one escapes, but combined with you, I have almost no defense left. You are a beast all on your own, but together, you are the ultimate weapon to take me down. Coming at the speed of a bullet train.

I’m terrified.

I’m not giving up. 

I’m humbled. I’m courageous.

I once thought of you as only ugly, worthless and evil. Those thoughts don’t exist anymore on their own. Slowly, new thoughts of you have taken root, extracting the insecurities from my bones. Beautiful, graceful, patient, divine.

For most of these 50 years, I saw you as a mistake, begging for a do over. But that’s not your truth. You were meant to be. For me.

As we usher 50 in, hand in hand, I see it now. I see it so clearly. YOU are ME. 💚


Love,
Amy


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