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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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Lonely in a Crowd

Hello and welcome back, if you are new here, welcome! It’s unbelievable how heavy carrying the weight of loneliness can be. It feels crushing at times when you are living it. The weight of an elephant, a thousand pounds or however you may want to describe it. It’s heavy. It’s sad. It’s…lonely. 

There are all kinds of reasons why people feel lonely in this world. None are easy. The loneliness I feel and have felt in my life that I can speak about is from being disabled. Feeling so incredibly different at times I wanted to come out of my own skin. Disappear because the loneliness felt so painful. In a crowd of 100 people it can feel like everyone around you is talking around you, over you not understanding. It’s not intentional usually, it’s just what happens. Things are said that isolate you. It’s hard to explain if you haven’t felt it. 

I know from talking to my other friends who live with a disability that they too feel this kind of loneliness. It’s just that missing piece, someone else like you. It’s not to say you can’t have other things in common but…


Shenanigans, me being me 😊

Let me try my best to explain how this can look from my perspective. I will set the scene….I’m invited to an event where maybe I will know one person. I know it’s an event where many other people will be, and everything in me is telling me not to go. Social anxiety is real! But, I also want to go and see my friend, and at least make an attempt to be social, so I accept the invitation. My friend and I agree to meet at the event because it’s just what logistically works best. I arrive, hopefully find an accessible parking spot, which if I do is a huge win and it takes a huge load off my mind. Maybe get a couple of mean glances as is per the norm when you are youngish/healthy looking from a seated position. I think to myself, ok today I am not going to let that bother me, I am here to have fun after all. So, I shake it off and climb out of the car hoping the mean onlookers will catch a glance of my awkward gait as I walk inside with my trusty cane at my side. (That validation always feels good, it’s like silently educating) I enter the crowded room and the first person I look up to make eye contact with is looking at me like I have the plague and scurrying away. Ok, I’ve still got this I tell myself, while nervously looking for my friend, feeling like this may have been a mistake. I get a half smile or two as I continue to look for my friend, and also a couple more people staring and quickly turning away. Then it hits. That lonely in a crowd feeling. I am the only person in the room with a visible disability. People struggle with approaching me or starting a conversation. They don’t want to say the wrong thing, they don’t know how to talk to me. It’s a terrible feeling to feel that out of place. It really makes me not want to continue to do things in a social setting. After several minutes I find my friend and all feels right again. In the end, despite the challenges, I’m usually glad I went. Once I’m able to talk with and connect with others there, they realize I’m not so scary after all! This is a scenario that has played out over and over in my lifetime.

Being disabled can feel very isolating, and so making those connections with others who understand is important to bringing about a balance in my life. That rings true for anyone feeling any kind of loneliness. When you are able to connect with those who understand, it fills your cup and reignites your confidence.



Last night I went to an event with a nearly lifelong friend. She has been a friend since middle school, and was also my college roommate. She’s an incredible human, and anytime I agree to go somewhere with her, I know she will have my back. She always has, whether it was picking me and my wheelchair up for high school helping me get on my feet again after a surgery, or going out for a night on the town. Recently, she has gone through some major health setbacks of her own. We have been able to bond on yet another level. I’ve always admired her tenacity, she’s a tough chick. Even more so now. She was talking to me about how she had to temporarily use a wheelchair while recovering from a surgery. I asked her what that experience was like for her. She said it felt lonely and isolating at times. I told her that I had started my blog post for the week, and ironically that was exactly what it was about. We had a fantastic evening together surrounded by some other really strong women. I’m not glad that my good friend had to experience these feelings too, but I am glad we could be there for each other and relate on a level we never have before. 

We reminisced about our younger days, and I asked her what I was like now as opposed to then, in regard to how I accept my disability. I wanted to hear how she remembered me. She said she remembered that I always tried to mask my disability (which is really not possible, but she’s right), and the only time I ever mentioned it was when I was cracking a joke about myself and the way I walk. I remember very well the masking that I did. I was just surviving being a teen and trying to fit in however I could, as most teens do. My challenges were just different. I feel sad when I think about how I denied my true self for so many years, but I know I was just doing my best. I feel proud of how far I’ve come. It has taken a whole lot of humble courage, but I’ve come a long way baby! I doubt the lonely in a crowd feeling will ever go away, but if I am my true self, then that’s all I need to be. 💚


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