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

Dear Diary…

Hello and welcome to another week at Humbly Courageous. I’m glad you are here. Spring has sprung! We are through the darkest and coldest days, and can enjoy 6 months of a lot more daylight!


Anyone else have a diary with a lock on it in your early school days? Where you kept your deepest secrets and privately wrote about your childhood crushes? Under NO circumstances was anyone to even try to open that masterpiece under lock and key!

During a recent attic clean out my husband brought a couple of boxes down for me to go through. They contained the last shreds of my life before adulthood. In the boxes were two diaries I kept. One during my younger years, and one during college days. There was some talk about young relationships, but mostly there were pages and pages filled with my insecurities regarding my disability in both. Not much changed between the two. Insecure and silently struggling with something no one understood. In these pages I referred to my disability as my “problem”. How sad that makes me to read. No wonder I couldn’t accept myself. I was seeing myself as a very damaged person who drew a bad hand. Lost. Needing answers. 


Countless times I expressed, “why me?” My young mind wasn’t yet grasping that I could choose to focus on the good in my life. There was lots of it. I was laser focused on my “problem”. When you give something in your life that much attention, it’s almost impossible to clearly see anything else. Everything going on in my life always went back to my problem. Whether it was to blame or not, it was the blame for everything that went wrong in my life. 

These days I still try to journal everyday. Over time, those journals have slowly but surely become a place where gratitude is recorded more than hardships. Where the good outweighs the difficult. The hardships still there, but more in the background. 

My old diaries still contain many empty pages. My current journal I’m writing in is almost full, and it’s time to start a new one. I think I’ll finish the pages of my old diaries. The story that started soaked in questions, insecurities and self-doubt will instead be finished with striving for gratitude, while still being truthful with my words. True to myself, giving myself the grace and love I needed as that young girl, but so often denied myself. 
 

I’m so grateful I kept these diaries for all these years. It takes humble courage to open up old diaries. Especially when they contain such raw and tough emotions. I now realize that life really is an imperfect journey with lots of room for improvement. Always growing. 💚

For more on my story, follow me on Instagram @ashinneman. 
Check out my weekly column “Disability in the City” in The Hamilton County Reporter.


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...

I Have Learned

Hello, and welcome to a new week at Humbly Courageous. I am so glad you are here.  Living my entire life disabled, life has been a learning process. As with any life, you live and learn. Some things take much longer to figure out than others.  Falling has been and always will be a part of my life. For as long as I can remember, I have been falling. It is just part of muscular dystrophy on my feet, and with foot drop on my right foot.  With that said, the falling part never gets easier, but what comes after it has changed for me over the years.  Saturday evening, I had a lovely dinner with my family to celebrate my birthday.  After we got home, I got out of the car and took a few steps. I turned to say something to one of my sons, and the next thing I knew, I was laying on the ground in excruciating pain. I landed on my right side with my upper ribs and wrist taking the brunt of the fall.  I have, in all these years, never fallen in front of my husband and b...

Community Chat-Sarah

Hello and welcome to a new week at Humbly Courageous!  This week I am so excited to share a new community chat with you.  Sarah and I have something very unique in common. We both live with the rare neuromuscular disease, Bethlem Myopathy. It has been incredible to connect with Sarah over the last few years, and witness her journey to motherhood. Like me, Sarah has spent much of her life searching for answers and trying to make sense of this disease.  We have many similarities, and “meeting” someone who truly understands just how difficult this journey can be, is truly life altering. We also both recognize how we can find beauty in the hard and amongst the pain. Our faith is strong, and we both agree that we wouldn’t be here today without our relationship with God. He is our strength on our weakest days. I was so honored to be someone she could come to with questions regarding her pregnancy and becoming a mother. That is something I longed for when I was entering into mot...