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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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Thriving Alone, Not Always a Bad Thing

Hello, thanks for joining me here! I recently was invited to do a podcast on Dr. Sherri Yoder's podcast channel called Thriving Thoughts with Dr. Sherri. We were introduced through a mutual friend who thought we would be a good match. He knew she was interviewing people for season 4 of her podcast called Thriving Alone. He was a friend from high school that I knew, not well, but after reconnecting with my husband and I on Instagram, we have gotten to know each other more these days. After speaking with Dr. Sherri briefly, we also thought we were a good match, and she and I agreed to record a video podcast for her new season called Thriving Alone.  We didn't talk too much before the podcast was recorded. She didn't want to know too much of my background before we did the interview in order to keep the conversation as authentic as possible. I thought that was a great idea, but also as a planner, I felt a little anxiety going into it not really knowing what she would ask. I knew the topic was thriving alone, and I obviously knew the area of my life well where I have thrived alone. Of course she was right, and the conversation was real and authentic. She asked great questions, and really helped me to share my story in the best way possible. Raw and honest. I would say my first experience as a guest on a podcast was a 10/10. 

If you have listened to the podcast either on Apple Podcasts, or Spotify, or watched the video recorded version on YouTube, you will know that I talked about how growing up disabled and undiagnosed was often an experience of profound loneliness. Even with the support of my wonderful family and friends. It was a void that they could not fill through no fault of their own. The only thing that finally filled that void, was an answer. An answer to a burning 44 year old question. An answer that had been searched for at the unsolicited sacrifice of my mom, dad, sister and me. Life was often unavoidably focused on me. It was focused on fighting to find an answer because that is what you do when you are sick and you don't know what's wrong. It was the fight to keep me walking, and not confined to a wheelchair. There were doctor's appointments locally and in other parts of the country, and many surgeries to correct issues when they didn't even know exactly what was causing those issues. I carry a lot of guilt about what I must have unintentionally robbed my family of. I know it was out of my control, but honestly speaking I struggle with that. It makes me really sad. 

 My parents were told so many different really scary things in the beginning of my journey when I was about 17 months old, and not walking independently. They were told I may not live long, I likely wouldn't ever walk, and certainly would have no life of my own. I would have to depend on them from a wheelchair if I did in fact survive. My parents are my ultimate heroes. I would not have lived such a full life had it not been for their immense courage to stand up to these doctors and my mystery disease, and say NO!!! Those answers are not acceptable. She will live a good life, and she will fight for it along with us. How courageous to make that choice for your child when everyone (the experts so to speak) was against that decision? That's exactly what they did. My family treated me as if I could do the same things they could, and I learned that for the most part I could. For those parts that I couldn't? I learned to adapt. I did some things in my way that worked for me. I did feel alone and different than those around me because physically I was, but I have grown to feel empowered in those differences with each year of life.

Through being diagnosed, I have made a lot of beautiful connections. Some with stories almost identical to mine, including not being diagnosed for many, many years. Just like me. So, even though I did grow and thrive in that space of profound loneliness, it turns out I wasn't really as alone as I thought I was. If you are feeling alone in something, chances are that you are in good company. Maybe you just don't know it yet. Maybe thriving while feeling alone is just all a part of your journey too. For it is there that we grow, and we realize that we are stronger than we could imagine. We are never truly alone if we are living in God's goodness for our lives, even when it is hard. His perfect plan. I will continue on my journey now of walking humbly courageous. I hope you will join me. 


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