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Showing posts from March, 2022

About Me

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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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Disability Defined

Hello and welcome back! If you are new here, hello! Glad you are here. Many of us have heard the phrase, my disability doesn’t define me, right? What comes to mind when you hear this? This is one of those phrases that can spark a lot of conversation and disagreements, even within the disability community.  In all tansperancy, I have to say, that phrase no longer makes sense to me. I don’t get it. If we are saying that, how can we expect non-disabled people to not see disabilities as negative, if we ourselves are saying, nope doesn’t define me, not a huge part of who I am. I think we have to be honest in educating others that while we are still capable of doing many great things, our disabilities do often present challenges. I think we have to do that to have our needs met, and continue to push for a more accessible world. I think it’s ok to say, “my disability defines me.” It does. It’s me. All I’ve ever known. It makes me, me. It affects most everything I do. How does that not define

Taking Center Stage

Hello! Welcome back, or if you are new here, welcome to Humbly Courageous! Did you ever have to take speech class in high school and/or college? If you did, did it terrify you? I know for me it certainly did. I would just sit in my seat waiting for my turn, with the ultimate dread, pit in my stomach. It was the worst feeling! I’m sure I was in good company.  When I accepted the role as MDA’s National Ambassador, I knew a big part of my role would be public speaking. I had done some public speaking in front of small groups in my local, and state ambassador roles, as well as a few other public speaking events over the years. When you are sharing your life story, and fighting for a cause that you wholeheartedly believe in, public speaking is a little easier in the sense that you know your material better than anyone else in the room. When I first started out though, it was still terrifying!  Feeling ready to speak with this guy by my side! When I was informed of my first speaking engageme

Grasping for Independence

Hello and welcome back! I appreciate all of the readers each and every week. It makes me happy to think that I could be making a tiny dent in helping to raise awareness surrounding disabilities. I was talking to a new friend yesterday, who is a former MDA national ambassador. She and I agreed that some days it feels like we are making a difference and making progress in helping to raise awareness surrounding disabilities, and other days it just feels like we aren’t getting anywhere, or are actually going backwards. However, neither of us plans to give up! We know that it matters. Independence…It's a word that can take on so many different meanings depending on the person. Something you will hear if you are listening to our current fight within the disability community, is that we are fighting for our independence in many different areas. Why? Because, independence is important to living a confident and fulfilling life. There are many ways in which our independence can be taken away

Am I Weak?

Hello and welcome back, and a warm welcome if you are new here! I’m glad you are here. As a person living with Muscular Dystrophy my entire life, I hear over and over, you are weak, your weakness, your body is weak, your muscles are wasting ( A weakening, shrinking, and loss of muscle caused by disease or lack of use) When I would go to my PT appointments I heard the word weak a lot because it was true, my muscles are weak. No one was saying anything that wasn’t true. Team Momentum’s NYC Marathon team showing our strength! However, as a child hearing that word on repeat every time I would see a doctor, that word embedded itself in my mind and began to grow in areas it was never intended to. It took up residence in my mind, which by the way, is not affected by my MD.  I kind of just felt weak, as a whole human. I wasn’t, but I often felt defeated before I ever began. I was a very negative thinker. I’m honestly still trying to heal from that mindset. Again, progress, but still a battle.