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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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It Won’t Last Forever?

Hello and welcome back to another week at Humbly Courageous. If you are new here, I’m glad you stopped by.

Often when we are going through difficult times others will say “don’t worry, this won’t last forever” and it brings comfort knowing that they are correct a lot of the time. Our problems are often fleeting, or only last for a season. But what if you have something in your life that can’t be comforted by the thought of, “this won’t last forever” to get you through. Then what?

I recently ran across a journal entry I wrote the day before I got my official diagnosis …finally. This is what it said.

11/7/18

Waiting:

I’ve been waiting…for 44 1/2 years to be exact. Waiting for someone to tell me why I “walk funny” as people like to tell me. Waiting to tell me why I’m so weak, why it’s hard to sit up, why I can’t get myself off the floor, why I’m in so much pain, why I’ve had so many surgeries, why life isn’t fair, why others have strong bodies and I don’t, why I get stared at in public, why am I the only one in my family that has this, why I fall, why I am unsteady, why I can’t run, why I am getting weaker and weaker, just waiting for someone to tell me who I fully am, to give this disease a name. A disease that not only brings struggles, but opens my eyes in a unique way that most will never know. That’s my gift. That’s what I can call mine. I was created this way for a reason, and I think it’s all finally starting to unfold. Genetic testing of my parents is complete. The final step to this process. Will it be a match? I hope to find out very soon. 

11/8/18

It’s a match! I can finally lay the search to rest. The first breath of my new life has been breathed. I have Bethlem Myopathy. A rare form of Muscular Dystrophy. Strange that a diagnosis like this would bring comfort. There is no treatment, and it’s progressive in nature. As far as I know, it will last forever. I’m going to live life in a way that serves others and is fulfilling to me. That’s what you do when there is no end in sight. Otherwise, it would eat me alive and take me to a dark place where I don’t want to be. 

Living with a rare incurable disease is an ache that no one can comfort, or make promises that tomorrow will be better. I’m sure many of you reading this live with something that no one can console. Forging on and reaching out a hand to others when you yourself are hurting takes humble courage. I have found that it does take the sting out of your own situation when you are able to help someone else. Connections with others who are also living life in a similar way is also a powerful thing.💚

Advocating in D.C.

For more on my story, visit my Instagram @ashinneman,  and check out my weekly column “Disability in the City” in The Hamilton County Reporter.
https://readthereporter.com/vulnerability-brings-blessings/


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