ev3rything-is-blue

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hannah muehi

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Apollo and Daphne, Jakob Auer, Vienna, before 1688

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Léon Printemps: The Day dying in the arms of the Night

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found out I've probably got rheumatoid arthritis. been through so much stress that my immune system fully went, well wait what if I'm the problem

and then she inflames the synovial membranes around my joints and organs.

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I hate when people tell me to stop being pessimistic about my future because I "don't know what my health will look like yet, it could get better!". or they tell me not to be so stressed about not having a diagnosis yet, or about upcoming doctors appointments. I don't think I can explain to able bodied people how terrifying the unknown is, especially when every new thing you learn is a dead end or something bad. every doctor's visit is holding your breath to see if you're going to be treated with kindness or disdain, if you're going to be heard at all.

I try to operate with pragmatism, not despair. my eyes are open & searching for a path I can handle. I haven't found one yet, but I know there has to be something I can do. but every now & then I am unceremoniously struck in the face with the deepest sadness from the depths of my heart. I bury it with so much anger that I can't remember it's there most days, so when it has the delightful courtesy to remind me of its existence I'm struck with a bewildered haze to sweeten the depression.

but I am sad. even if I squash it down past my heart into my intestines, keep going until they reach my useless organs hoping I might someday get to tear them out myself. the practice of denying it is how I keep living life, keep making it through every day on repeat. there is no room for ambition, no time for dreams. scheduling is a dance of controlled burns, knowing that any activity is going to result in a blaze of agony requiring rest of an approximate (but never equivalent) time.

so there's no room to allow this sadness to control me. there's no end in sight, I can't just be sad and wait for this to end. there is no end. it has to live inside of me, I have to give it a home, a jail cell where I can monitor it and make sure it doesn't take over what little control I have left of my own life. and then I just have to wait. and find some way to peace over and over and over. with every change that might come. every loss, every disappointment, every adjustment.

it's not pessimism. it's a different reality.

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One thing that I love about my disabilities is that they have taught me to be slow and gentile

While I might not always want to be slow and gentle, I must

I need to treat my body with love and kindness

I need to treat her like a baby bird kicked from the nest for being too small

unable to keep up with those around her

I spent so much time hating my body

When she just needed to be loved

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This journey is like a wormhole with no beginning and no end and I cannot seem to find myself amongst it all.

Who was I before this? Who will I be from here on out? Will my abilities change even more than they already have? Will I ever regain the abilities I lost?

Must I package my pain with an inspirational quote for it to be valid, for it to be felt? Because I feel it regardless. And sometimes no words can suffice for what this feels like.

But I’m afraid of crying wolf. I’ve bitched & moaned about every obstacle that led to this—what if I allow myself to scream about this and then my abilities regress even further?

Forever finding a balance between having gratitude for what I do have and acknowledging how terrified I really am.

Sometimes u just need to sob and scream and cry and bitch about ur disability

I think a lot of people feel like they need to be at completely at peace with their disability

And you don’t!

Be mad be sad be pissed off!

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There's really such as beauty that you're in a Wonder Land. 🌷✨

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Rose

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