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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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Grieving Physical Losses

I recently read something that talked about as a disabled person, making sure to take time to grieve physical loss. Things that you were never able to do, or things that your physical disability has slowly taken from you. As I read that, I realized I'm not sure I have really done that. I have been mad about those things, and felt sadness, but have never fully let myself grieve. 

As I've mentioned before, growing up I was never able to run, or jump. I was able to go out on the playground and play with my peers. I even mastered the monkey bars, practicing over and over, blistering my hands. I spent hours and hours on that. That's my first vivid memory of pushing myself beyond my "limits". However, I don't think I have ever allowed myself to truly feel the sadness of never feeling what it feels like to run, or jump. It just kind of was. 

I started having surgeries when I was very young, and they continued into my early adulthood. I mastered the art of walking with crutches and wearing casts, that's for sure. I honestly don't really know how many surgeries I have had exactly. Maybe that seems weird, but I was young, and just don't remember them all. I'm sure if I sat down with my parents, we could figure it out. Medical records were not as easily accessible back then. I just know I have lots of scars as reminders that there were many. Battle wounds, which I've learned to embrace and be proud of!

                                 

I mention this because during those times, there were months of recovery that went into each surgery, rehab, and learning to walk again and again. That took a lot of time away from my youth. With some of the surgeries there were definitely physical gains. In the beginning, they helped me to be able to walk better, and with less assistive aides like big heavy metal leg braces. The surgeries took a lot of time away from me, and caused me to watch even more from the sidelines. Definitely some lonely times that I didn't really share with anyone.

At different times, I have had both of my ankles fused. Bone was removed from my hip and fused into my ankles to make them stronger. Once my senior year of high school, and then once when I was living with my husband Jamie in Memphis. The second half of my senior year was spent 3 months in a cast, and one month in a boot. That surgery took a lot of things from me, but it also taught me that people care, and want to help. I had 3 friends in particular that took that role on. They would take turns picking me up for school and loading and unloading my wheelchair into my truck. They would drive me to school, unload and help me in and take care of getting me to my classes throughout the day, and then drive me home. Of course there was some fun that happened too!  I went to my senior prom with a boot on, but I made sure my dress matched and it all worked out ok! My goal was to be able to walk across the stage for my high school graduation, and I did! I think I just accepted those things as part of who I was, but I didn't ever take time to grieve what they took from me. 

                                                           

               
 I  don't know if I think it matters to me or not to grieve things that I can't change, or have no control over. Maybe I should. Maybe in some ways, it holds me back. Honestly speaking, I have not walked humbly courageous down that road yet. I think in time I might, but it feels like it will be painful, and who wants to purposefully walk into emotional pain? Then, there is another part of me that thinks, maybe things in my life were too good to grieve. Far more happiness outweighed the pain and sadness most of the time. I have always felt grateful that I can walk. I know that is a gift, and something I will always fight for. I don't know that I think I need to spend time grieving who I was meant to be. If I did that then it would just be a continuous trail of grief. Muscular Dystrophy slowly takes things away. Muscles waste away, and you are able to do less and less. Again, I am lucky that my type is slowly progressive. How can I grieve that? It's a blessing. 💚

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