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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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Letting Go

Hello and welcome back! I used to spend a lot of time daydreaming about what it would be like to live in a non- disabled body. I would envision myself as walking without a limp, running, running up stairs, heck just climbing stairs easily! I would think, how nice would it be to be able to rise in the morning and step out of bed barefoot and not feel a thing? No worries about what would physically happen. Just feel carefree.

I find that since I’ve embraced my whole self more, and become more open, I don’t “daydream” about those things as often. Sure, I still think about them from time to time, but I don’t spend much time longing for those things like I used to. I find that I’m allowing myself to enjoy the challenges a little more. I feel much more accomplished when I am able to do simple tasks that others may take for granted. I’m proud of myself for the amount of tasks and duties I can accomplish in a day. I like to reflect on everything I did at the end of my day. It’s not that I don’t get frustrated still…I certainly do…but I give myself much more grace than I used to. 

That is not to say that I wouldn’t jump at the chance to enter into a drug trial for my disease if it ever came along. Of course I would want that. When you are sick you want to get better. However, if I were to be totally cured one day, I have to admit the thought of that can scare me. What would happen to the person I am? I wouldn’t be me anymore. I mean I would, but I wouldn’t. Here’s the thing though… if I’m fortunate enough to see a cure or drastic improvement in my lifetime, I still have the gift of everything this disability has taught me along the way. The opportunities that it has brought about. No one could ever take that from me.

So for now, and into the foreseeable future, I’m enjoying the minimal improvements my stem cell treatment has brought about. Tiny victories that are actually quite huge for me. I’m enjoying the journey much more than I ever have. When I see pictures of myself these days I look happier than I used to. I feel joy more frequently than I used to. I owe it to myself to live out my life’s plan, not longing to be someone else. I’m living humbly courageously each day. I hope that whatever challenges you are facing, you may also be able to let go of what you thought should be, and just be YOU!




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