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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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On My Mind

Hello and welcome back to another blog! Today is International Day of Persons With Disabilities. Something that’s been on my mind lately, is that I’ve noticed when talking about my disability to others, I tend to downplay it, or try to get into the same sentence something like…I know it could be worse. I have a hard time just saying, this is how it is, how it’s always been and likely will continue to be, and the truth is it never gets easier. Period. It’s hard to explain my reality in a few words to others who aren’t familiar with disabilities. It’s frustrating to even think about trying to explain it all.  The reality is a lot of people just really don’t want to hear it. You start to get in return, this blank stare and things get awkward. 

Clearly, I know things could be worse. I often talk about focusing on gratitude because it really does make a difference in life, and I do have so much to be grateful for. However, I find  that when I’m always saying “it could be worse” that it blocks me from accepting my reality, which in the long run doesn’t help me, especially mentally. I’m left feeling like I’m not understood, and still just trying to fit into a world that isn’t designed for those with disabilities. There really are few people who know my daily struggles, and the ins and outs of those, and the toll that takes on a person. 

3 Year Old Me 😊

As someone with a disability, I constantly have to jump back and forth in between two worlds. A world mostly not designed for those who are disabled, and also my world where my reality is that I have limitations beyond my control. Unless you’ve live this way, or live closely with someone who does, it’s hard to understand how non -accessible things can be. It’s frustrating to go out and face these things each time, and to have to constantly explain and remind others of what I can or can’t do. Let’s say you break your leg, or temporarily have limited mobility in some form. You’ve felt that inconvenience on a small scale. Maybe you’ve gotten a taste of how little the world is willing to bend for you and your needs. Imagine living your entire life like that. 

Keep smiling!

If I want to make it work, and live a full life, then I have no choice but to spend my life adapting to make situations fit my needs. Constantly. As the possibility of living more of my time in a wheelchair inches closer and closer to me, I often find myself assessing situations for that reality. Trying to mentally prepare for that. What that will look like for me, for my marriage, my children, my relationship with others. My mind lately is full of all of these thoughts, and it’s truly overwhelming. 

Do things that make you happy!

So, on that note, I will humbly courageously keep up the good fight. I will continue to shed light on what it’s like to live with a lifelong disability from my perspective, for whoever is out there that wants to learn and try to understand, so that you may become part of the change for all of us who live with a disability. The more people who will join us in our fight to have access to the same world that a non-disabled human does, without constantly having to jump through hoops, the better. We just have to keep moving forward, and never stop fighting. 💚

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