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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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Changing

Hello and welcome back to a new week here at Humbly Courageous. For my new readers, welcome! This week I had an opportunity to do an interview for a really unique and exciting project coming out this summer. I will share more when the project is finished! 

One of the interview questions led me to the thought and realization that every good quality that I embody has undoubtedly emerged from the adversities in my lifetime. A few that came to mind were perseverance, empathy, patience, being a good listener, having grace for myself and others, grit, compassion and resilience to name a few!


The older I get, the more clear the view becomes when I look back on my lifetime, and the mountains I have climbed, in reference to my life with my disability. All that time, all those years of wrestling with myself and the uncertainty, insecurities and heartbreak that came with being undiagnosed for 44 years, was not all for nothing. It was ALL for something. Something good. Something I never ever could have gotten from a lifetime with no hardships or challenges. 

During the years of searching I would get so frustrated because all I could think of was all the time that was wasting away during the search. I was too immersed and obsessed with the process to realize the good that was coming out of it all. My vision was clouded, but I persevered anyway.

I truly wouldn’t change it for the world. You may be thinking that’s easy to say now that you are on the other side of it, and sure, that’s right, but only partially true that I’m on the other side of it. I did get answers, but I’m still disabled. However, I see things in a new light. I see things with appreciation and hope for the future. Not every moment, but many. There are still bad days and times of frustration. That’s life.

I used to hear people talk about loving and accepting themselves, and that just felt so far away to me. It felt like this thing that I was certain I’d never get to experience in my lifetime. I couldn’t stand the sight of myself when I’d catch a glimpse in the reflection of a window or mirror and see myself walking. I was ashamed and felt embarrassed that people saw me that way. That’s how far from accepting myself that I was. Any self confidence that I portrayed was just a mask. On the inside I felt anything but confident, and certainly wasn’t living with any kind of inner peace. The people closest to me knew that, but most didn’t.

I did all this work to change my outward appearance. Eating healthy, working out the best I could. I wanted to feel good in my skin. I did change those outward appearances, but I never felt fully satisfied because I wasn’t looking inward to change those destructive thoughts I had towards myself, and I wondered why I couldn’t get to the place of acceptance of my full self. 

When I got my diagnosis, it’s like this giant boulder was removed from my shoulders. It was an emotional release to get that diagnosis, but also felt like a physical release of carrying that weight for so long. I finally knew me, all of me. It felt like home. I was connected on the inside and the outside. It was no longer like I was living with a stranger, but it felt more like living with an old and dear friend. There was immediate change within me, and I began to heal from the many years of destructive self talk. I still at times catch myself with the negative self talk, old thought patterns are hard to overcome. I know my truth now though. 

With gratitude, optimism is sustainable ~ Michael J Fox

Nothing about living a lifetime with a disability has been easy, but that doesn’t mean it’s all bad. It takes humble courage to face adversity and view your adversities as life lessons and remain optimistic. Don’t waste your time dwelling on the bad, but rather spend your time dwelling IN the GOOD. It will change you! 💚










Comments

  1. Reading this I'm thinking how I always had many of these same thoughts about how to appreciate life lessons and stay positive. I tried to put blinders and work at a pace that matched able bodied peers. Now after two months in ICU and on a ventilator it’s dawning on me that slowing down and shifting direction from research professor to social media influencer and advocate might be my inner and outer self finding a mesh point after 34 years with MD.

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