Skip to main content

About Me

My photo
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.

Followers

Live Unedited

Hello! Welcome to another week at Humbly Courageous. I am glad you stopped by! I think most, if not all of us, have things we look back on as we analyze our younger years that we wish we could get a “do- over” for, right? That’s just part of living and growing in age and hopefully a little wisdom along the way. Sadly there aren’t any “do-overs” but as long as we are alive, there is room for growth and change if you desire. 



Living with a disability, something that I really look back on and wish I could do differently is the amount of time that I spent “editing” myself to seemingly make me more appealing to others, or to fit in when I felt I didn’t because of my disability. If you have been around, you know I have touched on this before. I think it bears repeating. Especially so for my younger readers who are also making their way through life with a disability that makes them feel different from everyone around them a lot of the time. 

I have had the opportunity to form some relationships with girls/women younger than me in the disabled community. Let me tell you, I have often been in awe of them and how much further they are on their self-acceptance journey than I was at their age. Maybe it is partly the times. I feel it is more acceptable and even desirable to stand out and be unique these days. I’m certainly no expert, but from my observation that is what I observe. I love it. I wish we could all feel free to be our complete and total selves instead of an edited version created for whoever we are with. 

One of the ways I edited myself was by pretending that my disability didn’t cause the level of struggles that it did. Very often I downplayed the amount of stress it caused me. I got quite good at it I guess you could say. I think my really close friends knew more of my struggles, but probably not completely. To be honest, I’m still guilty of doing this, but I’ve definitely improved!

Another way that I edited myself was to laugh at all the “jokes” regarding my disability or assistive devices. I even made some jokes on my behalf a lot of the time. I did that because I wanted to help others around me feel more comfortable. Do you ever do that? Make yourself uncomfortable to help others feel more comfortable? It never feels good and definitely isn’t authentic. On the outside I would laugh, but inside felt like a completely different story. I don’t know. Maybe I shouldn’t be so sensitive or take myself so seriously, but that’s just who I am. I love humor and I love to laugh, but humor surrounding my disability can be a slippery slope.

The truth is, most people who are meeting me for the first time, likely haven't spent a lot of time around someone who is disabled. So it is like a blank slate. Just being your true authentic self is a great way to show them what being disabled truly means for you and your life. Additionally, you can show them that you have many more sides to you than just that one aspect. Maybe you are the very first disabled person they've ever encountered. Why not show them the real you and help educate them on disabilities? If they like you for who you are as a whole, then it can be the start of a great authentic relationship and you can live unedited! That just makes everything better when we are able to live as we were designed and can bring our own unique qualities and perspectives to the relationship. That could be a very good start at helping to change some of the negative perceptions that we all know exist surrounding disabilities. That would certainly be a big step in the right direction. It takes humble courage to let your true colors shine. The world would be a better and probably much less stressed out place if we could live unedited. Speak your truth, even when you are afraid. With practice, it will become your norm and you will find that you feel a refreshing sense of freedom. 💚


For more on my story, follow me on Instagram @ashinneman
Please click the follow button at the top of this blog page to make sure you don’t miss a post. 
Thanks for being here!

 

Comments

Popular posts from this blog

Dear Muscular Dystrophy

A letter to Muscular Dystrophy on the eve of my 49th birthday. This has been a lifelong journey…. Dear Muscular Dystrophy, At times you dazzle me, showing me the heights of human love and kindness, and at other times you take me to the deepest, darkest parts of my soul. I have silently pleaded, please just let this end. I don’t want to do this anymore. I’d like to say that was a one-time thought, but you’ve made it impossible to tell that as a truth.  I want to love you because you are a part of me, but you make it so hard at times. You feel like a best friend when I achieve feats that seem impossible due to my physical weakness, but also you feel like my worst enemy living inside of my body when you fail me, and I’m once again lying on the floor. You robbed me of big chunks of childhood joy, while I sat in silent envy of my friends, as I watched them effortlessly turn cartwheels, run and jump.  You are stuck to me like glue during the countless hours in waiting rooms, operating rooms

Deep Breath

Hello and welcome back, or if you are new here welcome!…..Deep breath this week, as we are diving into the emotional trauma of 47 years disabled… here we go with just a few examples. Sharing these are really hard for me, but I think it’s important to share because these things are not uncommon for those who are disabled. Some I’ve shared before, some I haven’t.  “Yeah, from the look of your profile picture you really look disabled 😂” There is SO much I could say to this. What does that mean? Am I supposed to look a certain way as a disabled woman? Please, enlighten me. I’m all ears.  Or how about the folks that left me on the floor of a bar/restaurant because they assumed I was drunk because I fell as I was exiting because the door swung the opposite of what I was expecting, so easily throwing me off balance. Had not had a drop to drink. Left me there, staring at me as if I was a zoo exhibit.  Even the manager came by and told me to move because I was letting all of the cold air escap

A Hateful Encounter

Hello and welcome to Humbly Courageous which is a series of past and current life stories, as a woman who has lived her life with a disability. Sometimes, my posts are happy and upbeat and encouraging, and others like the one you are about to read, are an example of the social injustices I face regularly as a disabled woman. I like to keep thing’s positive and upbeat, but as you know life just isn’t always that way.  Sitting looks very different than when I walk  To the woman who treated me so cruelly just because she judged a book by it's cover.... I guess you'll never know how deeply your mean stare and unkindness towards me hurt my heart. I guess you didn't see me struggling to carry three small grocery bags to the car while walking with my cane. You couldn't have possibly known the thoughts going through my head as I was putting my cart away and getting ready to make the short trek to my car. The conversation going on in my head went something like this.....Am I goi