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What a Lupus Flare Feels Like

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What does a lupus flare feel like?

For me, flares are all encompassing, growing from the deepest roots. Each one recedes on a path larger than the one it arrived on, ground ravaged and bare.

It aches on the best of days where knees bend and fingers flex. Quiet, subtle, and practically invisible.

My nerves are loud. Each one yells and screams and shakes, trying to get across the knowledge that something is badwrongnotgoodfixit, why aren’t you doing anything? What is wrong with you? You must deserve this.

They don’t know anything, of course, but they are a great distraction when bad days are rumbling across the horizon. I wonder if they are sometimes in on a plan. They are too small to know more than one thing at a time, though.

When my body flares, it no longer belongs to me. I honestly wonder as I get older if I have any claim on it at all.

I look at the stories of King Midas and Medusa and wonder about the people they transform, from flesh and bone to gold and stone. How deep does that transformation go? Does it hurt as much to be stuck in that kind of quiet? Or is that the only time the many voices of the body fall to silence?

I doubt it. People are scared of the quiet, and some of the best things in life are noise.

I remember a discussion I had when I was still in school about how reality and the world only truly exist where you can see them. What I see through my eyes, what I hear to my subconscious and back, what I touch with my fingertips. How should I feel when I know that what I touch isn’t real?

Ice and cold are not actually sharp, but they feel so. I wish I could show everyone else, but until then people laugh at me and I’m thoroughly embarrassed.

I belong to the conglomeration of my existence, and sometimes it feels like it is just going to give up on me and move on to greener pastures.

It is a heavy corset braided over my bones, and it pulls tight on some days and falls too loose on others.

I like to look at stories of werewolves and think on the ramifications of that reality. To be able to look at my span of a month and know beyond all doubts that there are specific periods of time that officially will be out of my control. Would that be easier? I sometimes want to know.

Other days, I am living through superstitions about what will keep this thing at bay.

Pray to these Gods, turn the lights on and off four times, cover myself in the scent of lilac and Tiger Balm, wear mismatched socks because life is too short.

I haven’t learned the right chants, yet. I feel closer on some days than others.

But it still comes over me like a wave, heavy and enveloping. I always tell myself next time that I can prepare myself, take a deep enough breath before it happens, and I never do.

This shadow perforates my body and fills the entirety of what I know. It is a thousand pounds and also weightless, and I can’t breathe.

I can’t read. I can’t see. My heart beats so fast and so hard I feel my body pulse fully with it.

I don’t want anyone around because it is so scary and filled with evil. I can’t touch anything I love when I am being held down this way. I refuse. That is my choice and it is still in my power to make so.

It taints all in its way and I have worked too hard for this life.

I wish it would transform me into something as stunning as gold or as solid as stone, but it hasn’t yet.

So far, I come out on the other side without change. Gasping and clawing at the ground as I slowly get normal feeling back. Raw and aching and so thoroughly angry.

It’s a phase of the moon that transforms without transformation, causes pain for no reason except to throw its weight around and remind me how small I am.

I still can’t understand the language of my skin and muscles, the cracks and creaks of my joints and tendons and ligaments, their cries, but they are comforting in their familiarity.

I feel like I have lost so much weight, like my body and mind are deflated and filled with empty spaces, and when I stand I don’t know what to do with my legs.

But I can stand up in the end, can hear more than myself and the inner workings of my bizarre machinery where it ticks and trembles to life once again.

It echoes.

That kind of enormity is comforting. I get up on the other side and walk on.

Follow this journey on Instagram here.

Originally published: October 26, 2017
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