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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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Seasons

Hello and welcome back! Living in Indiana, one of my favorite things about living here is that we get 4 distinct seasons. There is truly something I love about each and every one. Fall is my favorite though for sure! 😍 I just love the beautiful colors during that time. 

Fall hikes are my favorite 

Living with a lifelong disability, I’ve definitely gone through distinct seasons of how I’ve have viewed my disability during my lifetime. I can also say I can pick out things from each and every one of these seasons that I have come to love too. The season I am in now though, is by far my favorite. I’ve never felt more comfortable in my own skin. I think part of it is just age. As we get older we discover more and more that we don’t need to live our lives to make others happy, or to make them accept us. We don’t need to try to be something we aren’t. We just are who we are.

As a little girl with a disability, I was pretty naive in my thoughts about how others would accept me until I started school. I quickly learned that kids did see me as different, and while most were kind a few were really unkind. It only takes one bully really to change you. For me, it was the kid in first grade that used to walk behind me, unbeknownst to me, and mocked the way I walked. I wouldn’t know he was doing it until I heard the giggles of my classmates. This particular boy bullied me a for a couple of years, and it changed me. That experience alone, had me feeling like I stood out, and was the start of me really realizing I couldn’t just blend in. It was a tough thing to deal with. It was the start of my hatred towards myself and my disability. Where my anger was sparked. I know, I can’t blame all my troubles on one person, but he certainly had an affect on me that would last for many years to come. 

Another season, as I alluded to above, was anger and bitterness. I wanted SO badly to make my disability disappear. I hated a huge part of myself. That makes me really, really sad to think about now. In my mind, I could pretend I wasn’t disabled until it presented a road block for me that I would have to figure out, or I saw someone staring at me with a not so nice look. That happened daily. So, it was this back and forth in my mind, constant up and down of who I really was, especially because at that time I didn’t have an official diagnosis. I was labeled as “unidentified” which in itself was a horrific mind game.  I’m not sure if I can even explain how hard that time was for me mentally. 

Often people would say to me, “smile, you look so unhappy”! What was really happening, was I was concentrating on walking without falling in front of my peers because that was just the absolute worst! The most mortifying experience. 

Not mad, just concentrating 

That was a tough season, but looking back I can love parts of it because it taught me a lot. In early adulthood, I was mostly in a season of frustration because I was still, “unidentified”. It’s hard to fully accept oneself when you don’t have all the pieces to the puzzle. It feels so incomplete. It’s just this constant state of unrest. You don’t know what will happen next because you don’t know what’s wrong. Could I die soon?, was always on my mind. That causes a lot of anxiety, and quite honestly depression. The season of depression wasn’t an easy one. The ways I coped weren’t healthy, but I was just tying to survive. It was a dark time in my life in many ways. 

Again though, looking back I can love how I kept going. I survived. All of those seasons led me to where I am now. I’m diagnosed, finally after 44 years of searching, I no longer despise my disability. I love what it’s taught me, and the good that it brings into my life. The last puzzle piece was snapped into place, and I can breathe. I’m focused on my mission of helping others along their journey of seasons. Because of all the times I humbly courageously kept going, I’m now more equipped to help others who may be struggling, or would just like to hear from someone who has already trudged through the muck. Maybe, just maybe, that can help make someone’s life just a little bit easier. Maybe your story, and all the seasons you’ve been through, could help someone too. 💚

Summer bike rides 👍🏻








 



 





 



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