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

I Get To

Welcome to another week at Humbly Courageous. I’m glad you are here!

Instead of saying I have to, try replacing that with I get to. Over time, watch how that changes the way you see things. Your abilities. You will start to see things differently. 

That is something that has really helped me. Focusing on what I get to do instead of making excuses and not using the abilities I do have today. Wasting time and being angry about what I can’t do instead of being happy with what I get to do. Even things like household chores that I’m still able to do. Most things like laundry or cooking have to be adapted in a way that works for me, but I’m still able to do those things. I try my best just to be grateful for the ability to keep doing those things. Tomorrow’s abilities aren’t promised. I’m feeling that more and more. Between my disease and aging, I feel like everyday is a huge battle to come out ahead. 



Living with Muscular Dystrophy, I am often trying to find that happy place between the feelings of, I’m not doing enough, to the feelings of exhaustion and pain because I’ve done too much. It’s a different balance everyday.

You may be surprised to hear that even though my muscles are weak, I do have some short periods of time where I get these small bursts of strength. Not strength like a non disabled person has, but a short burst of  increased strength for me. That’s happened most of my life.

It usually just pops up from out of nowhere and doesn’t happen too often. This past weekend, I was sitting outside enjoying the beautiful weather on our patio with my husband . We were getting ready to go inside and I stood up and told him “I feel like I want to try and walk to the back of of yard and back without any assistance from my walking sticks or cane”. Our yard is pretty big and quite uneven. He said, “you sure, do you need help?” I assured him I thought I’d be fine. It wasn’t easy and there were a few moments where I questioned my decision, as I lost my balance a couple of times. In my mind, this is why I exercise regularly. To try and build any strength I can. I love how excited he gets for me when these things happen. He’s so good at documenting these meaningful moments for me too. It’s good for me to look back on these times. It gives me hope.

When I made it back to the patio, I felt relief and a sense of accomplishment. Each time I’m able to do something like this, it gives me hope and builds my confidence. Obviously, I wish these bursts of strength were more frequent or lasted longer, but hey I will take what I can get. 

Each time I do one of these activities gifted by my bursts of strength, I know there is a chance my legs may fail me, and I could fall. It takes humble courage to take risks, but I think it’s worth it to reap the rewards on the other side. Even if those rewards are a quiet inner sense of accomplishment, it’s worth it. It makes a difference in our lives when we can accomplish things we didn’t think were possible. 💚

For more on my story, follow me on Instagram @ashinneman

Check out my weekly column “Disability in the City” in The Hamilton County Reporter. https://readthereporter.com/finishing-the-boston-marathon/

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