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

Vantage Point

Hello and welcome back, if it’s your first time here I’m glad you are here! This past week was a doozy. Dropping your kid off for college is no joke! The days leading up to it are emotional, and then when you say that last goodbye and walk away, oh man. I’m pretty sure I made some kind of painful sound I’ve never made before as I hugged Luke goodbye, my tears freely flowing. I had hoped to hold it together until I reached the car because it was also a happy and exciting time, but nope!

The night before he left, he wanted to sit outside with us and have a fire in our fire pit out back. As we were sitting there enjoying the night, Jamie said “have you ever looked at the house at night from this vantage point?” To which I responded, “yes, but not very often.”

After that, I couldn’t get it out of my mind that things can look so different depending on how you view them. I’ll be the first to admit that I spent most of my life viewing my disability stuck at the same vantage point. Feet firmly planted, telling myself, this sucks! Questioning, why me? every chance I got. How could I possibly see anything positive from such an unfortunate hand I had been dealt? Poor me. That’s how I lived life, especially in my thoughts. It was depressing. In fact, I spent my young adult years dealing with depression. It was a difficult time mentally. I was convinced that was the only way I could see things. 

If you’ve been around a bit, you already know about my long journey to my diagnosis. I talk about it a lot because waiting for an answer for 44 years is a really long time to wait. However, maybe it was worth the wait? Maybe I wouldn’t have been ready to journey to this new vantage point I’ve found if I had been diagnosed sooner? Perhaps I wouldn’t have been ready or open to it? I mean, getting to a point where a majority of days you can view your disability as something you can be thankful for is no small feat. It’s a lot of mental work and diligence towards a better mindset. 


It took humble courage for me to journey to this new vantage point, but it brings me a sense of contentment that I never had before. It also takes humble courage to dwell here, and I definitely don’t succeed 100% of the time. Some days I slip and start to move toward the old vantage point, but I really don’t want to go back there to stay. In fact, maybe there is yet another viewpoint I’ve yet to discover. That seems exciting given all the blessings my current angle has brought me. If you too are stuck, and feel like there just isn’t any other way, try taking a journey and seeing yourself from a different light. You may just like what you find more than you could have ever imagined.💚 

P.S. I’m now officially a Purdue mom, Boiler Up!

I gave him the sweatshirt I bought the day I moved in at Purdue 💚 


Comments

  1. Love the sweatshirt! Glad he made it up here. 🙂

    ReplyDelete

Post a Comment

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...