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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 Best Roommate

Hello and welcome. Glad you stopped by! Growing up I had many hospital stays. After my extensive foot and ankle surgeries I would usually have to stay for about a week. At the time they didn’t send you home as quickly as they do now. I stayed so I could do rehab/physical therapy while I was there, and learn to walk with my crutches, or whatever it was that I needed to do. They taught me how to go up and down stairs with them and things like that. Because of my weak arm muscles using crutches was hard for me, and balancing on one foot was hard too because of my muscle weakness. However, they pushed me to keep walking, and I’m glad they did. Over time, I learned to master the crutches, and actually got to be pretty fast on them, getting better with each surgery.


PT session as an adult

Also, back in the 70’s-80’s private hospital rooms weren’t very common. I could always count on having a roommate. Sometimes they were good, sometimes not so good. Once I was paired with a woman that screamed constantly. That was awful and scary for a little girl. Or the roommates that would fall asleep with their TV blaring for hours. However, one time I hit the jackpot. 

I remember being wheeled into my room still groggy from the anesthesia and pain meds I was on. I looked over and saw that my roommate was a young girl like me. I was about 8 at the time. I was so excited to see her. I can still remember her name and her kind smile. Her name was Jana. She had been there for awhile, and had been through a few different roommates, so I think she was as excited to see me as I was her! 

We had the best week despite all the pain I was in, and she was dealing with a hard situation too. We made the most of it. We played games, ate our meals together and watched the Miss America pageant that was on one evening. One of the best hospital stay perks was having my own television and remote on the bed to control it! When it was time for me to head home a week later, we had to say goodbye. She lived several hours from me, and I knew in my heart it would probably be the last time I would see her. We exchanged addresses and were pen pals for a couple of years, but eventually that stopped. 

All these years later, I remember her vividly. She was a light for me, and I think her mom and my mom were glad to have one another to talk to too. I never stayed alone in the hospital. One of my parents always stayed the night. 

Often in life we have those, “I can’t choose my roommate” type of moments. Moments where we can’t control a situation we are in, and we just have to make the most of it. Having a disability is kind of like a constant being stuck with a difficult roommate type of situation. You can either let it consume you, and constantly make you upset, or you can make the most of it. Making the most of it definitely requires humble courage. It’s daunting and exhausting, but if you try to see the good in it, it makes it a whole lot better. If you too are stuck in a “bad roommate “ situation in your life, I hope you can do your best to see the good in it somehow. It really does make a difference in our quality of life. It’s not the easy thing to do, but it’s the best thing for us. 💚

P.S. I’ve heard so many people say this is the most beautiful fall they can remember. I would have to agree. It’s just been stunning. I wish these leaves could hold on forever! 




Comments

  1. I always think that even the darkest cloud has a silver lining. Thank you for sharing your journey

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