Hello, and welcome back! You know that point when you are climbing a hill, and you are at the spot that feels the hardest? The part where you think, wow this is steep I’m just not sure I can get to the top. That’s how it feels to live with muscle weakness. You are constantly in that place, the one that feels the hardest. The one where you question how will I do this, it’s so steep? You think, I want to turn back, but you can’t. You have to keep climbing because it’s the only way.
I struggle with describing muscle weakness. The type that I feel. In the past I’ve used words like heavy, or suffocating, scary, and while all those are certainly accurate, I still feel like they don’t truly depict what it’s like.
As I was leaving church last week, we were walking out. It’s in an auditorium, and we had been at the bottom. There is a ramp on the lower level that you walk up to exit. As I was walking up it, holding onto Jamie, I got to that spot, and I thought to myself, this is what it’s like. It’s like being stuck in that very specific place. Permanently.
I think I want people to understand so badly what it’s like because I am so empathetic. I don’t want pity, that’s not at all what I’m saying. I feel other’s emotions so deeply. Sometimes it’s really hard because I can feel other’s deep sadness from their struggles and it feels so hopeless. I just want to help. Are you that way too? I wonder if that’s why I long for others to understand what 47 years of this has been like for me? That is a long time to trudge through something day in and day out, never getting a break.
I feel like I want other’s to understand, so that the disabled community gets the respect and equal rights that we should. There is a lot of back and forth in the disabled community about people telling us we are inspirational to them. There are strong feelings on both sides. I don’t discount either side, but personally that doesn’t bother me one bit. It doesn’t bother me that my condition and what I do with my life while enduring it inspires them. My disability does make daily activities more difficult. That is just a fact. When someone says that to me, that makes it worthwhile. It makes my disability something that is used to help others. It is used for good.
I wouldn’t have always said that. In my 20’s and even 30’s I had a big chip on my shoulder, and was covered in bitterness towards non disabled people. To be completely honest, that bitterness can still creep it’s way in, after all I am human. However, I know it does nothing good for me. It’s not like I want everyone else to be disabled, I just want to be understood. I feel like we all just want to be understood.
Before, I think it was in the way I was presenting myself that made it hard for others to understand me. I was very closed off. Humbly courageously sharing my true feelings journey is a step in the direction of feeling understood. It’s during that journey of being understood that I think one truly learns to accept themselves. Giving myself over to use my struggles for good, has taken me a long way in accepting myself, just as I am.
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