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last night when you got up i was awake
and only after you were gone
i realized that faint warmth at my back
had been two fingertips
checking to make sure i was still here
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I was thinking today about something that happened when I was pretty little. Maybe eight or nine? Somewhere in there.
My parents took us to a friend's house, or at least I assume it was a friend. Not someone I ever saw again after this so it was one of those mysterious adult cryptids that only features in your life for a brief span for some unknown reason as a child. I think we might have been on vacation.
Anyway, this lady had a fascinating house, full of trinkets and interesting crockery and, most fascinatingly to me at the time, a doll collection. I don't remember exactly how I got my hands on it (only it must have been allowed), but there was this one specific doll that instantly spoke to me. I was enamored with this thing. I could not take my eyes off it. I wanted to have it so badly that I think I implied I'd really like to have it even though at the time I knew it was rude, because at the time I seem to remember being gently but firmly shut down.
So as a dumb gremlin I pulled the dumb gremlin approach and started visibly sitting around staring sorrowfully and longingly at the doll, even while I still had the opportunity to hold it. She never said anything, but I know she noticed. I probably wasn't the first or the last kid she was obligated to invite in who really wanted something of hers that plenty of people would insist were for kids, for kids to love and play with and wear out and ruin, not for adults to hoard and admire and cherish. I bet she fought some frustrating battles to keep what was hers out of grubby, whimsical little hands motivated by entitled hearts like mine.
Anyway. As the night wore on I was tugged in two directions constantly. Sometimes I was vividly imagining a future of being "unexpectedly" told I could have the doll. I would be so shocked. I would cry. And then I would be delighted and totally definitely take care of it forever and it wouldn't be forgotten in a heap with the rest of my toys within the week.
But I also, with the world-weary understanding of a grizzled single-digit child for whom disappointment was an occasional viscerally enraging companion, was beginning the slow trudge towards accepting the fact that I was not going home with this doll. My dramatic ploy to guilt this grown woman and relative stranger into giving me something she clearly valued was joined by the twin and opposite purpose of urging my heart to let go of this thing it had grasped so selfishly and utterly. At some point I remember setting the doll aside, voluntarily giving up my last bit of time with it before I would likely never see it again.
Still, the phantom of my wish lingered. And as the night wound down and we said our goodbyes...
I guess my point here is, now as an adult with my own collection of childish things (including plenty of my own dolls, some sentimental, some limited or rare now, and at least one just because I sure did want it so, so badly from the instant i saw it), I am so glad that lady didn't fall victim to my dumbass plot and let me have her doll.
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hi. if you're in this tag, you're suffering, so here's some things that work for me. i can make no promises about how WELL they work, in my experience every flare is different and i'm keenly aware how lucky i am that i only get flares (knock on wood). but i know how it is to be in so much anguish that you're willing to try anything, and i've been in this tag myself looking for help i couldn't find, so here goes.
(other sufferers please feel free to add your own strategies as well, even if they directly contradict mine. this beast is different for everyone it hurts.)
STUFF THAT HELPS ME:
for some reason, sitting with my feet propped up, with one leg straight and one bent. the more horizontal the better, with as little pressure on the trouble spots as physically possible. (fully inclining to get all my blood to go up instead of down can help too.)
ibuprofen or other painkillers, efficacy varies.
vibration. not in a sexy way, think massage levels at a steady and unchanging rate, and not for too long. at the right angle it seems to overwhelm my nerves and make them stop trying to send information. (i mostly use this when i'm feeling active pain, it's not helpful if the sensation is only distracting, and too much pressure will make it worse.)
getting off, but, and this is important - CONSCIOUSLY RELAXING immediately afterward, every muscle in my body, and staying that way as long as possible. i do this even when i'm not in the middle of a flare in hopes of rewiring my physiology to not immediately roar back to attention. sometimes it can trick my body into accepting whatever satiating hormones are getting released as enough to (mostly) turn off, at least for a while. twice is the max before i try something else.
as much as possible, i try not to get off more than twice in the same day. often by the third or fourth time i am actively making the flare worse, or i'm risking a flare if i'm not already having one.
for some fucking reason i tend to bloat up during one of these, so lately i use peppermint to try to address that. not sure how well it works yet, but if you're bloating, you can probably tell how much worse that's making it, try to bring it down any way you can.
this requires doctor buy-in but muscle relaxants can help me sometimes, if nothing else they'll help me sleep through it. diazepam varies for me, it can make things better or do nothing, it's a toss-up.
the yoga position "happy baby." i don't do it right since i don't know how to yoga, but it tends to hurt my back for a while which can be nice and distracting, and when that eventually goes away it helps with taking the pressure off as much as possible. i haven't tested it for very long periods because it's hard to do anything in that position except think about how much i hate having pgad, which means i'm thinking about the problem, which doesn’t help.
progesterone supplements help. i'm afab so i don't know if this will help amab people but if you can talk your doctor into it, allegedly it's supposed to calm everything down. however, messing with your hormones in any way always runs the risk of making it worse, so be aware.
brief, inconsistent pressure. kind of the same thing as the vibration, it's about overloading the nerves so they shut up for a minute (which i'm aware may be a quirk of mine and not a universal experience). think more scratching or pinching, less pressing or rubbing. again doesn’t really help with arousal, just pain.
keeping an empty bladder. i don't know why, it's just generally worse for me if it's full, so i go early and often.
STUFF I AVOID:
ice. for me this is the definition of short term relief in exchange for long term suffering, no matter how much relief i get in the moment it's going to be ten times worse later and tends to only prolong the flare.
lidocaine gel. i might get a little relief from this, but not much, and i suspect all it really does is make me unaware just how much pressure i'm putting on the area, which only agitates everything and makes things worse when the numbness wears off.
ssris. i know these are marketed as a treatment for this condition, which is wild to me because i got mine from taking ssris and you'd have to strap me down and sedate me to get me to take them again. i have basically become very hyperaware of any med that can potentially mess with my serotonin in particular and will immediately reject one if i start to feel a flare coming on when i start taking it. i also request that my doctor start me on very low doses of anything we suspect of being a trigger, so i can hopefully catch it before it gets bad.
i already kinda mentioned it but getting off too often, this invariably makes everything so much worse and the sensation and the desperation only increase over time. if i fuck up like this sometimes squeezing in the right place to reduce as much blood flow to the trouble spot as i possibly can will help, but only temporarily, and ideally i can recover enough to move on to a distraction technique instead.
thinking about it, which is why i'm going to have to stop working on this post now and try to do something else (reading and gaming and watching video essays or doing more than one thing at once tends to be my go-to, i tend to be unable to focus on a hobby that requires too much active thinking like drawing or writing or studying during a flare).
again you know your situation better than i ever will, unfortunately, so if you already know something on this list will just make it worse, please don't try that. if something that doesn’t work for me works for you then thank god something works, do that thing i beg.
best of luck and i hope you can find relief somewhere, in those thin places we have to accept as the best we can get for now.
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the loneliness has settled to the core of my bones like fallen leaves. they have replaced the marrow there, dry and brittle; they will snap under any burden, any moment now.
the pain has latched on to my skin from every angle, sinking its teeth in. it's heavy and smothering, swinging at every step. i do not look at it.
the weariness permeates any room i enter, always emanating from somewhere around my gut, the base of my spine. i scuttle out of rooms before the breathlessness spreads.
the sadness has become a habit, somehow, but how do i stop what i didn't start? i was too careful to get addicted to something that could be flushed away or locked up, so this can't. i subsist on little patches of joy, flashes of intense flavor that have my full attention for a few seconds before the gum becomes a dead thing in my mouth. (another coffee please, non-alcoholic.)
is this living?
is this dying?
maybe both of them are happening at once. my bones splinter under the unbearable weight of my phone, my pen, the thin stack of pages i sign that somehow mean everything will be okay (will it?). my skin stretches and relents, red and scarred, but the pain needs more space still. my breath comes a little shallower every year (i used to sing, did you know?). and my heart drowns somewhere at the bottom of an ocean, unsure how it got there, unable to escape; surely rising back to the surface will deflate it, deform it. it's safer to stay down here where the pressure helps it remember its shape. it's better to stay away.
it's better to stay away.
this won't last. (i've felt this before.) it can't last. (i've known this before.) every part of me feels fragile, worn down, doomed.
i keep trying but there's no room in my head to escape anymore.
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"the protagonist is terrified of fire and has just been established into a scene with a furnace large enough to stand inside. obviously the protagonist is going to be forced to contend with this threat in a way that engages their personal demons. this story is predictable, which means it's dumb and bad."
incorrect.
what happened there was the narrative conspired to smuggle you past a looming plot point, and on the way, the story pointed to the furnace over the heads of the less experienced observers and whispered a promise to you:
"i am going to take us inside that furnace.
"i am giving you the chance to see what our protagonist does not yet see. i am feeding your prediction of where we are going, how we will get there, and how our protagonist will triumph, or fail.
"do you see it yet?
"wonder about it. hope it. dread it.
"see you there."
the story is a magician onstage, dramatically revealing the assistant sliced in two, and while everyone else applauds, you shout "fake."
of course it is.
this is how illusions are spun, clown.
you're the one ruining the show.
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Once upon a time, there was a little boy who got bit by a dog.
"What did I do wrong?" he sobbed.
"It's not your fault," his mother told him, wiping away his tears. "These things just happen sometimes. No one can predict them."
The little boy was doubtful at first, but he eventually accepted that this was true.
One day, he called a little girl names until she cried. Ashamed, he told his father, who ruffled the little boy's hair and laughed. "Don't be silly. Girls are just sensitive," his father said. "You didn't do anything wrong."
The little boy was doubtful at first, but he didn't enjoy the sting of his guilt, so he quickly accepted that this was true.
There was an older boy that was sometimes cruel to the little boy. "I think he's going to hurt me," the little boy told his teacher.
"Don't be silly," his teacher said. "You don't know what will happen. You mustn't say that about people."
The older boy broke the little boy's nose and two of his fingers.
"This wasn't your fault," his mother soothed. "Sometimes people are just violent for no reason. No one can predict it."
The little boy was doubtful at first, but he had learned enough to accept that this, too, must be true.
One day, the little boy's father hit his mother, only it was too hard this time. At the hospital, the boy told the policeman, "I think he's going to kill her."
"Don't worry," the policeman said. "He's your father and you shouldn't say things like that. Besides, no one can predict these things."
The little boy was silent.
He went home and thought and thought. And a few months later, the little boy bought a gun.
"What's that for?" asked the store owner.
The little boy hesitated, but after he thought about it, he smiled.
"I'm going to shoot my parents and some people at my school," he said.
The owner laughed.
The little boy laughed too.
Then he paid for the gun and left.
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I am an ant who understands the danger of pesticides.
This knowledge consumes my every thought. What will happen if a human uses such a thing on us? We live near humans and the colony is growing every day, I say. We cannot escape notice forever. What will we do?
What can we do, they say. We kill and are killed. Threats to us must coexist with us. It is how the world is.
But if the pesticide is used on us we will die, I say. It would be catastrophic. I would never survive it, I am too tired and worn down.
It may never be used, they say. We are not in the humans' path. The risk to our way of life is low.
But if it is used, I say. I cannot bear the thought. We should move the colony.
Do you think there is a place to go that is free of threats, they ask.
I do not know how to answer.
We are safe enough, they say. There are children who kick down anthills. There are humans who pour hot liquids that invade every inch of antmade tunnel. There are whole colonies captured and sacrificed to human curiosity or amusement, subjected to unimaginable conditions. None of this is happening to us now, and the odds that we will simply be left alone are overwhelming. We have more pressing concerns, why must you worry about a thing that may never happen in our entire lifetime?
I am silent because they are right, but I cannot silence my thoughts. They drive me to the surface at night, sleepless, erupting from my brain in an unrelenting column of white noise.
I am an ant who understands the danger of pesticides, and I wish that I knew nothing.
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perhaps there is one to whom you owe the sweat of your brow.
perhaps one is nurtured by the gentleness of your hand, or the cessation of your voice. perhaps there is one to whom you have promised your words, your patience, your smiles.
but there is no soul to whom you owe the beat of your heart, the passion of your blood, or the whispers of your demons.
these things were yours by right long before the broken hand learned gentleness, the drowned voice learned prudence, and the frightened smile learned warmth.
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I am calling her, after 8pm and two back to back shifts, from the first job I have ever managed to get, with my knees trembling and my calves throbbing poisonously.
I am calling her and crying. Like a child at a sleepover where everything went wrong.
“I think I need to quit. I don’t think I can keep doing this.”
I am breaking apart, I know better than to say. I am destroying myself.
Help me.
There’s a confused silence on the other side of the line. I fidget. The pain is like a cloud of ash.
“Are you sure?”
I thought I was, but suddenly I doubt. Maybe I’m just overreacting. Maybe tomorrow won’t be so bad. Maybe no other customers will notice.
When I reluctantly admit the truth, her reply is baffled but reasonable, as though there is nothing to fear. As if there will be no consequences for this.
I am in too much agony to verbalize my terror. Instead I go home, crawling back under her roof and gingerly relaxing into her attentive sympathy.
My heart does not recall how to trust it.
In what feels like no time, she brings up the call. “It’s like you were asking for permission.” There is a strange note of almost-pride in her voice. She doesn’t quite smile.
I avoid her eyes. Say something appropriate about how much it had worried me to disappoint her.
For years, I burn with shame whenever I think about it. I remind myself I had no right at that time to look to her for comfort. For safety. That I shouldn’t have needed any reassurance at that age anyway.
Then I encounter the story of a child who was picked up from a sleepover when everything went wrong. Whose mother insisted at every opportunity, over and over again, that it was okay to leave any situation, and she would always help. There would be no strings attached. No reason to apologize.
Nothing to fear.
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We’re here for only a short time
So try new things. Listen to music you’ve never heard before. Find stories that speak to you and see the world anew, fall in love anew. Discover and experience and delight and never slow down, because all of it is here, right now, and you’ll miss out on so much if you don’t make room for it all.
Don’t look back.
We’re here for only a short time
So love while you can. Hold close everything you’ve already found that contains a part of your soul. Reread, rewatch, re-listen and re-imagine. Cleave to the things that have always pulled you through the hard times, because it’s a part of you now, and you’ll miss it so much if you leave it behind.
Don’t give up.
We’re here for only a short time
We’re here for only a short time.
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You are good enough.
I can hear the voice backhanding these words right off the page as you read them. Cluttering the meaning of four simple words with asterisks, “buts,” “only ifs.” That is not what I am saying to you. That is not my voice, and it’s not yours. I condemn every hateful lie it whispers to you.
You are good enough now.
You can’t bring yourself to believe this. The voice is too loud, even in its absence. Even when you’ve toiled endlessly for years to crush it down to the tiniest whisper. Even when all that remains is its echo tearing through your soul.
It doesn’t matter. Inability is not badness. Being able does not always mean doing good.
And you are good enough.
Imagine with me what it would feel like, to finally do everything right. To be everything it whispers you should be. To rise up out of the murky depths and clear the surface of the water, feel the sunlight on your face, and know that you do not deserve to drown.
Realize with me that this is exactly where you are. It’s where you’ve always been.
Someone told you otherwise when you had no choice but to listen.
But you are good enough.
Are you here with me, in the now? Do you feel the ground beneath you? The air filling and sustaining you? It does not care what you’ve done or haven’t done. It does not care who you are and it has no demands for who you should be. It does not even realize that you are good enough, but it doesn’t need to.
Stay.
You are good enough.
In time, you will forget. You may not remember how to come back, how to remember that everything that voice tells you is wrong from a place inside you that cannot be questioned.
This changes nothing.
You are good enough when you can’t breathe. You are good enough when your body is tired of churning the water and every fiber of your being screams to stop. You are good enough when you keep going and you are good enough when you give up.
That voice you hear, that tells you there is so much to do before you can be worthy of love, before you can be whole, before you must melt down your insides and reform them into a true self that can only be earned through suffering, is wrong.
The surface is always a breath away.
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There is a wolf inside me
and it hungers. Paces the whole of me, threatening the thread of my heel, and I fliNCH at every scrape of its footpads against the inside of my skull. I cower from its broken howls, cling to every waking thought it consumes in place of what it MUST HAVE, what squeezes the spittle dripping HOT and poisonous from its CLENCHED teeth, what drives its pacing to THRASHING its howling to SCREAMING over and over AGAIN the promise that is always broken once more once MORE once MORE and it will all be over PLEASE AGAIN I BEG YOU
With dense clouds, I fill my ears. With rough sand, I pour the lot, down my throat as. slow. and. careful. as. glass. And, when I hold the wolf’s mouth closed, I know what I risk. Even before the muzzle is on, I feel it TREMBLING and I snatch my hand away-- disgusting ugly hate you hate me how dare you this should be MINE.
For all this, I don’t question what my struggles do to my body. Because anything is better than giving in. (Anything, I WILL DO ANYTHING, PLEASE)
I curl up on the head of a pin, and I imagine comfort. I hold myself still, as if I am prey that has not yet been snared, as though a blanket over my head might just protect me from the steady tick underneath, pretending I cannot hear or name or touch the predator that already has its teeth in my guts its claws around my THROAT that I am not SHAKING and WEAK and HUNGRY.
Tyr was brave, but I am only desperate.
It is agony it is ECSTASY it is hateful it is LOVE it is sickness it is SICKNESS it is pain it is HOPE and it
is
finally
.
.
quiet.
.
Together, we hold ourselves still. Listening. We hardly dare
to
.
And when the spell does not break, when the hunger curbs its ceaseless demand, I hope that I have killed the wolf, and the wolf hopes it has died.
But like a wound RIPPED open afresh, the hunger THROBS awake unsated, keener for cheating death, bottomless NEED, immortal DESIRE, masquerading as divine PUNISHMENT for SIN and broken HOWLS mingle with bitter SOBS as the cycle begins AGAIN in the miserable give and TAKE of enemies who are not enemies, allies who can never be allies, united only in our contempt for what we DON’T want make it STOP PLEASE we DON’T want this make it STOP
and we understand too late that we hoped in vain ONCE MORE.
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