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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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Walking with Humble Courage

Hello! Welcome back! Haven't been on in awhile so wanted to give a life update! Last time we left off I said I was giddy with all of the possibilities that my Muscular Dystrophy diagnosis brings. Well, since then I have been working hard to connect in as many ways as I can and to make a difference in this world. My theme in life seems to be living well on the path that I was given. The path designed just for me by God. It's only been through this diagnosis, and fully accepting that this is me, this is my unique journey just for me, that I have felt more myself than ever.


 Even though physically things have gotten worse, the weakness has progressed, and I have obviously gotten older, I feel more joy than I ever have. I can only attribute this to prayerful pleading with God to LEAD ME to the path I need to be on. Not to keep pounding on doors never meant to open for me, but to the path that was waiting for me to hop on and take off running so to speak. Speaking of running, in October of 2019 my husband and I completed the Chicago Marathon together with me riding in a duo bike. We trained for several months leading up to that moment. That marathon brought more opportunities for me to get my story out, and to share my experiences of living life with a rare muscle disease since birth. My husband and I were interviewed by a local newspaper which got our story pushed out to even more people. The entire experience was amazing, and connected us with even more people on MDA's Team Momentum. Team Momentum is an awesome group of people who run, bike, walk etc. to raise funds for MDA. We love everyone we have connected with there and their National Director, Chris Marshall, has been key in our deeper connections with some amazing people at MDA who are helping me to promote my mission of reaching others. In regards to the Muscular Dystrophy Association, in February of 2020 I was selected as Indiana's State Ambassador. I was so so excited and couldn't wait to start my journey traveling around the state and representing MDA with this new fire in my belly. I was so ready! Then March hit, and well everyone knows what happens next. No public events for me. I was really disappointed in the beginning, as I know everyone was for many different reasons. Everything was shut down. Nothing felt the same. 

Chicago Marathon 2019

The one thing I thought of that wasn't shut down? Social media of course! While social media has its pros and cons, for me it was my ticket to continue on my mission of reaching others. I had all the normal back and forth of should I post this video or this picture with a story behind it? What if no one likes what I'm doing, or even worse doesn't understand it? Well, uncharacteristically of me I decided to go for it anyway. I started posting videos, and writing some messages that seemed to just come into my head. Could this be what God means when he says he has a plan and purpose for our lives? He puts ideas and thoughts on our hearts, and if we are willing to listen and move forward with those, we are able to bless and help others in this process? Is it really that easy? I think it is. I have had such a positive response, and have had so many people reach out to me that have said, they've been searching for years to connect with someone who "gets" it. Parents who have reached out after getting a brand new diagnosis for their child, telling me I have given them HOPE. People who don't have a disability telling me that reading my posts and watching my videos inspires them! I mean, sometimes when I read these messages from total strangers telling me I've changed their lives, I am just in complete AWE of my God, and what He can do through me. I am just a vessel to get His message to those who need it. My vessel happens to have Muscular Dystrophy and has been in training for 46 years.

Bike ride with my fam

I don't have some huge following, but I feel like even though I don't I'm still reaching those that need to hear what I have to say. So with that, my current plan is continue on. I want to become more and more involved with MDA. I think we are the perfect pairing for what I'm trying to accomplish. Their audience is part of my target audience. Together we can and will make a difference! Together we fight!

Tomorrow is a big, HUGE day for me. I am trying an experimental stem cell treatment that involves extracting fat, and processing it to produce stem cells, which will in turn be infused back into me in hopes of doing magical healing things. That is my very non medical explanation. What it really is, is a God sent opportunity of hope. I can't think of a time in my life when I would have needed this more. The time is now, I'm declining physically, and I need something to save me from drowning. Right now, this is that something. I have no idea if it will work. No promises have been made to me of a cure or even improvement, but there is a chance for improvement. I am excited to take you all on this journey with me. Join me in making the absolute most I can of this opportunity. I'm open to God's will for my life. If He wants heal me, or make me better to share that testimony, then He will. I believe God is calling me to walk humbly courageous. Stay tuned!

Comments

  1. Mary FianceDecember 7, 2020 at 1:44 PM

    Great post, Amy. You are a true advocate. Together we fight!

    ReplyDelete
  2. RspeedDecember 7, 2020 at 7:47 PM

    Praying for God's miracle Amy. We have faith in our mighty God that can do great things.

    ReplyDelete

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