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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.

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The Desire of the Heart

Hello, welcome to Humbly Courageous. I am glad you are here. (Trigger warning: this post contains sensitive subject matter. Please do not read further if you are sensitive to the subject matter of suicide.) Waking up in darkness everyday. I wonder what 44 years of that really did to me? The damage it caused. There wasn’t a day I can remember that I didn’t think about it. The great mystery that plagued my life was that I did not have a diagnosis for something that impacted my life on every level. I kept this mostly to myself because telling others how much this affected me, often diminished my true feelings because they just didn’t understand. No one had answers. Painfully alone on this level, I built a life around that great mystery. It felt like a black hole right in the middle of my life, and I was constantly in danger of slipping into that black hole and never coming out. I thought about it many times. My college years were especially littered with bouts of depression and frequent
Recent posts

Recycled thoughts

Hello and welcome to another week at Humbly Courageous. I am glad you are here!  Loved this unique sunset! Recycled thoughts. Anyone else have recycled thoughts on replay? Often our fear of reliving pain we have experienced in our lifetime trumps any sense of reason we should have. We become fearful. What if such and such happens again, or what if this or that happens? Sometimes in my mind, it feels like a broken record. It can be hard to escape that place. It took me a very long time to get to a place where, in my mind, I was kinder to myself. I had a bad habit of constantly beating myself up. I could never measure up to the image of myself I had created. Truth be told, I was never good enough for myself, and so in my mind that meant I wasn’t good enough for anyone else either. I could be a miserable person to be around.  When I first started trying to change this about myself, it was like a newly formed scab that just the slightest touch would open it up again. It was fragile. As tim

Walls

Hello and welcome to a new week at Humbly Courageous. I’m glad you are here! With each passing year, the walls I built around myself become taller, thicker, less penatrable. The construction of my walls began when I was young, having a lot of surgeries. The scariest times were when I had to part from my parents, and be wheeled to the operating room surrounded by strangers wearing masks. It was such a terrifying experience for me. Although most were kind once back there, it was a place of unknowns. I was completely at their mercy. Also, knowing I’d wake up in horrible pain and completely immobile was equally as frightening to me. Not to mention, I was also always violently ill, sometimes for days, after anesthesia. I began constructing these walls because it felt like a barrier of protection that I needed with me at all times. I didn’t want to trust just anyone. It felt like doctors were against me because they could never help my physical condition. They couldn’t even name it. Every en

The Berlin Marathon/In a Duo Bike

Hello, and welcome to another week at Humbly Courageous. I am glad you stopped by! Be flexible. A phrase I would silently repeat hundreds of times as we headed overseas to Berlin, Germany. This is where my husband and I would run our first overseas marathon as a duo bike team. One of only five or less duo teams out of the 58,000 or so of our closest friends also running. Speaking of friends, traveling with us to help us were our friends Andy and Michelle. Andy, also was running the marathon, and we needed extra hands to help with traveling with the duo bike, plus a plethora of other things we need assistance with. I also had my wheelchair to travel with. They were our travel angels. Anticipating every need we had, even before we spoke it. Our travel angels Not only was this our first overseas marathon, but it was my first time traveling overseas. There was a lot of anxiety for me heading into this trip. Saying “yes” to my husband when he asked me if I wanted to complete our fifth marat

Change of heart

I met you one year ago. Delivered by a kind stranger with my oldest son by my side, I reluctantly accepted your presence in my home. I felt an overwhelming sadness. I felt like I had given up. I should have tried harder, I thought. Once I was alone for the evening, my family scattered about, I broke down. I documented the day in a tearful and heartfelt video, I have shared with no one. I wanted to remember. I had thought about this day for years. I fought it, dreaded it and shed rivers full of tears thinking of this day. The day I would need you. I stared at you, trying to decide if I liked the way I had designed you. I did. You were different, like me. Little by little, we bonded. Unlike my scooter, you felt like one with me. An extension of my body. Our first trip together was to New York City not long after you arrived, brand new. Together, we saw so much more than I could have without you. It is not lost on me that you are not with me all of the time. I still have time on my ow

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