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  • Writer's picturemaryelise555


Updated: Sep 2, 2020

I am grieving the loss of myself - the physical loss, the meat and muscle and core of me. My body is failing me. So, what am I really grieving? Am I my body? Who am I?

I am angry that my body doesn't work anymore. Angry that I drop everything and that I can’t button my shirt or eat sushi without scattering rice everywhere or put on my pants standing up. But these are small things.

I'm furious that I can no longer walk my dog, garden, or enter a store with the confidence that I won't feel like I'm going to faint. I can no longer hike, or run, or sing, or dance, or rely on my body for anything other than shuffling around like I’m 100 years old. I'm lucky that I can walk, I can still swallow and breathe. I can also speak and laugh and write.

I have my brain, for which I am more grateful than I would have ever imagined.

I look at people and want to scream at them, “Who cares!” Like my friend Katie and I used to do at work to get through exhausting moments. We didn't exactly scream at people, but we pretended as if we were going to and then laughed. Those little things that used to get to me I see getting to others, and it's all I can do not to say something obnoxious like, “You don't know how lucky you are,” or, “at least you have your health.”

I used to be that way too, always railing against everything and fixating on things I couldn't control or that were insignificant, and now I see clearer. Like the Buddha, I am able to get outside myself, to separate myself from myself. Able to step back and see what is important. Unlike the Buddha, I am tragically caught up in my emotions because I am an imperfect being forever linked to them. Yelling out, “Who cares!” and getting frustrated that I can't put my socks on without falling over or do two things at once. I’m so fucking weak, I can’t even hold my toothbrush properly.

It's been a long journey to this diagnosis of MSA, but I am still alive today and able to find humor and beauty and genuineness and friendship. This is really all I can aspire to, philosophical words and the outlook of optimism. If I am sad, it must be a fleeting feeling. Those feelings stem from fear, and I am trying hard not to be afraid. I am trying to live my life.

This is the new normal, as much as I am fighting against it. Maybe that's the lesson, the beauty in all this. To embrace it, instead of kicking it away.

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