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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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Apology Accepted

I got a message a couple of weeks ago, from a guy I went to high school with. The message he sent broke my heart. He told me that he had once said something when we were playing volleyball together in high school (well, I was standing there, not doing much playing haha, the ball always seemed to be attracted to my face somehow, but hey I was trying!) Anyway, he told me that he didn't realize I had a disability and made what he thought was a flirty comment. If I'm just standing or sitting, you can't really tell I'm disabled until I start walking. He told me that as soon as he made the comment about me not getting to the ball fast enough, or something of that nature, I moved. He could see then that I was disabled, and he instantly wanted to disappear. I remember it. It was awkward, but I knew he didn't know when he said it. I think I tried to laugh it off, as I often did. I laughed to help the person who said the unintentionally hurtful comment feel better.

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He mentioned he wished he would have apologized immediately. I too wish I had the tools at the time to be strong in who I was and just explain to him what my situation was, but I didn't. I was as insecure as they come. I wanted to disappear too. He said he has carried that with him for 30 years, and wanted to apologize. That just broke....my....heart. Apology accepted, and absolutely no hard feelings. I appreciated the courage it took him to tell me that all these years later. 

This same type of scenario has happened to me over and over. I guess it's shocking to people who see me sitting, say at a restaurant, and then I will get up to use the restroom or leave, and can just feel the burning stares.  In college, when my friends and I would go out, it was kind of even amusing to catch the eye of some guy, and I would sit there knowing at some point I'd have to get up to use the bathroom, and that would most times be the end of the attraction. Sometimes, I could hear mean comments about how I looked pretty until I got up.  Makes you cringe probably, but it's true.  Definitely didn't stop me from having fun that's for sure, and most people were kind.  It did however silently have an impact on my confidence.

My point is, there is a real difference from what my friend from high school was apologizing for, and what people have intentionally said or in many cases have not said to my face. A phrase I often would hear people saying, was "what's wrong with her"? Ugh! Why? I am a human being, and I have feelings too. Can you imagine, hearing someone saying that about you just because you walked to the bathroom, or out of a restaurant? 

This is honestly hard for me to write. It just makes me emotional. Those comments didn't stop all of a sudden when I graduated from college or anything! I still hear them. Most recently I had passed a man and his children passing me in a hallway. Sometimes I can see the panic on the parent's faces as they approach me to walk by. They are probably silently praying their kid doesn't loudly say, why is she walking that way, or what's wrong with her? That happens A LOT, and did on this particular day. I get it, I have two kids, I've been on that side of it too. I taught my kids that it's ok to respectfully ask someone with a disability a question about their disability. More often than not, those of us with disabilities would much rather be given the opportunity to educate, than to hear a parent shushing their child. It's not a secret to us that we are disabled! They aren't pointing out something new. If you are reading this and have children, teach them people with disabilities are human just like them, and that we all have differences. Taking the time to be educated if you really want your children to learn about others is what is the least awkward, and most certainly the least hurtful response. I've also noticed if I make eye contact and smile and say hello, it helps the child a lot, they usually smile back.

I'm not looking to shame anyone who has ever been in that situation, but also if someone like myself doesn't talk about these things, then others won't know what to do. We are all different. Some differences can just be seen on the outside. Every time I leave my house I have to walk humbly courageously. I put up my shield for the comments. Some days they just hit harder than others. It doesn't happen every time I go out, but it happens more often than I ever tell anyone. If my friend who reached out is reading this, please know I appreciate your courage, and I actually think because of that happening, I decided to share this very important message. It's never too late to apologize, even if the other person doesn't expect it. It still matters.

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