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

Hope Infusion #10

Hello and welcome to another week at Humbly Courageous. I am so glad you are here!

Today, I completed my 10th stem cell treatment. Many often ask me how it’s going. “Are the treatments helping?” I always say, “I think so?” I guess it depends on what one’s definition of “helping” is. 


No, I’m not leaps and bounds better, and a ton stronger. Some days, I do question if they are really helping or not. I still have many difficult days, when it feels like the weakness is winning, and I’m a prisoner to its demands.

However, when my husband sends me a graph of my progress in the pool, tracking my thrice-weekly pool running workouts, I can see with my own eyes that my exercise progress has stayed very steady. It’s even improved in the last few months since my last treatment. I rarely miss a workout for anything. 


I also recently tackled “the big hill” just before I turned 50. I had a little doubt going into it, but I got it done! That seems telling.


Just a few days ago I went golfing with my husband and my son. I used to golf when I was younger. Not competitively by any means, but I guess well enough to enjoy it. I had a dependable friend that I played with, and he carried my clubs, as well as his, when we would play. All I had to do was walk the course, show up to hit the ball, so that was very helpful. This time, I was impressed I could still balance enough to hit the ball. That surprised me. I was so glad I tried it again. By no means could I play every ball, but still, I’m so grateful to be able to do that with them!


Other than that, I’m still keeping up with all I have to do at home, as well as writing, managing my doctor appointments, therapies and enjoying the summer.

It takes humble courage to walk by faith, but I find that, for me, that is my only choice. I have to keep trying, keep going. If I stop, I fear I may never get going again. So, rest I will, but stop I won’t. If getting some stem cells that were grown from my own body gives me a peace of mind and a glimmer of hope at this point in my life, I’m going to do it. 

Check out my weekly column “Disability in the City” in The Hamilton County Reporter.

More about my stem cell treatments 




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, operati...

In Luke’s words

Hello, welcome back to another week at Humbly Courageous. I am glad you are here! When my oldest son asked me to proofread his college essay a few years ago, I don’t think anything could have prepared me for what I would read. My biggest fear before having children, was that my life, my disability, would affect their lives in a negative way. I know what I endure as a disabled person on a regular basis, and for years I debated if I wanted to bring children into the world with me and potentially affect their lives in a bad way. After years of discussion with my husband, I finally felt like the decision was clear. I feel God put it on my heart, that He wanted me to have children. I felt that very strongly all of a sudden. As I went on the journey that Luke took me through in this essay, I felt many different emotions. I felt sad, mad, grateful, proud and so much more. I am sad/mad that the opinions and reactions of others caused us to miss out on these precious times with Luke. That part ...

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 ...