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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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The Desire of the Heart

Hello, welcome to Humbly Courageous. I am glad you are here. (Trigger warning: this post contains sensitive subject matter. Please do not read further if you are sensitive to the subject matter of suicide.)

Waking up in darkness everyday. I wonder what 44 years of that really did to me? The damage it caused. There wasn’t a day I can remember that I didn’t think about it. The great mystery that plagued my life was that I did not have a diagnosis for something that impacted my life on every level. I kept this mostly to myself because telling others how much this affected me, often diminished my true feelings because they just didn’t understand. No one had answers. Painfully alone on this level, I built a life around that great mystery. It felt like a black hole right in the middle of my life, and I was constantly in danger of slipping into that black hole and never coming out. I thought about it many times.

My college years were especially littered with bouts of depression and frequent thoughts of ending my life. I lived recklessly. I did not really care what happened to me. I felt done, as if I had any right to make that choice. I tried my hardest to fill that dark hole with anything and everything I could. I was especially fond of things that numbed the pain and provided even a fleeting moment of relief. On the outside, I laughed and tried my hardest to present as a person who had it together. On the inside, I was anything but a person who had it all together.

My faith had gone dark. There wasn’t much to cling to in the sense of hope.

My parents noticed my downfall, and to make a long story short, I went away for a couple of weeks to try and “fix” myself. I was in bad shape. Oh how angry I was when I arrived at this place about 4 hours from home. Just on the edge of my 21st birthday, I was broken. I needed some fixing, but I didn’t think that was possible.

The place I was at was a Christian based program. At the time of my arrival, that was meaningless to me. It certainly didn’t seem like a good thing to me. Instantly, I felt like I did not fit in with the other “broken” people there. Except that I did. I was just as broken as they were, even if for a totally different reason.

About a week went by, and I thought, “well, my parents are wasting their money.” I just wanted to go back to my life, with my friends.

One afternoon, one of the counselors there, Pastor Dan, came and asked me if we could chat. I remember it clear as day. We walked down a long hallway where a window with a window seat waited at the end, the sun shining brightly upon that seat. He was a gentle soul. It felt like he saw my brokenness in a way no one ever had. Like he really saw it. Although I can remember the setting, I cannot remember what he said. It doesn’t matter really. I walked back down that hallway a changed person. I wasn’t completely fixed. Far from it. But he had shone a light down in that dark hole. After that, I lived with more hope. I no longer wanted to leave this earth. I had tried many different medications to produce this feeling, none of them successful. He did though.

On my 21st birthday, I got to go home. I know my parents saw a different girl than they dropped off there. I’m sure they were cautiously happy. To say that my life was perfect from then on would, of course, be a lie. The change had begun inside though. I began to make better choices for myself. I never completely returned to that girl I was when they dropped me off there.

Over the years, I have thought of Pastor Dan. I have tried hard to remember what he said to me, but I always come up short. I have never forgotten how he made me feel though. I wonder how many other lives he “saved”? I would guess many.

It would take many years to grow my faith where it stands today. I suppose that is what the term growing in faith means. I am certain, there is still room for more growth, always will be.

Sitting here, on the 6th anniversary of my diagnosis day, that story is what came to mind. It’s not at all what I sat down to write today. There are a handful of people who I wish I could find, give them a big hug and thank them for changing my life. I believe, certain people are strategically placed in our paths to help us along the way.

Six years ago, I got a new lease on life. I still can’t believe it finally happened. I finally got my answers that I so desperately needed all those years. To many, it may seem like I talk about this a great deal. To others, maybe you can relate to a long agonizing search of some kind, and the effect finally getting answers has on a person. It’s monumentally transformative.

What I have done in the last six years is truly live. I had never accepted myself in the way I have since I was finally diagnosed. I have done so much in these six years. I feel like I packed more life experiences in these last six years, than I did during those first 44 years. I do sometimes wonder what my life would have looked like had I not lived in the search. I can appreciate what it taught me, and I am sure that I still haven’t uncovered all that it did teach me. I will always somewhat struggle with the why. Why it had to happen that way. I have no doubt though, this is exactly the life that I was meant live.

I went back and forth as to if I really wanted to share this post. This was obviously written from an extremely vulnerable place that still stirs up a lot of tough emotions in me. It is hard for me to look back on that broken girl. It is painful. Sharing a story full of raw emotion like this takes humble courage, but its through our vulnerabilities that others may be helped. As I stated above, I had no intentions of writing this story today, but the words began to flow. Maybe the answers you are looking for will not come today, or even tomorrow and beyond. Don’t lose hope. Don’t give up on you. You are here for a reason. 💚

“May He give you the desire of your heart and make all your plans succeed” Psalm 20:4

 

 

 

 

 


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