Open Sorcery

Tag: chronic fatigue

  • At Heavy Cost

    I came across this Thread by Nate Postlethwait and wanted to write about healing and freedom as a victory won at heavy cost because it got me thinking.

    Hey, everyone. Allēna here. This post will be a heavy one, but I want to write it even though I know it’s gonna hurt. I’ve spent years praised for my emotional strength and resilience when all I wanted was to be safe. Lately I’ve been deep in contemplation about that very thing and in conversation with several people about this and related issues myself and my system have been having. Then I came across this Thread and wanted to answer the question Nate poses for you so that you can see the true, extremely heavy cost of resilience and “strength” as most people define it. Don’t get me wrong, healing has been costly, too. But trying to be hard and guarded costs far more than healing ever has.

    My Headmates and I Have Spoken About Some Of The Things That Happened To Us And How We Got Through Them, But What Did We Lose In The Process? Trust, for One.

    The first thing that comes to mind is the ability to trust. System wide, we struggle to trust and are actually diagnosed agoraphobes as of 2021. It’s complete and utter hell. Our trauma taught us that we are the only ones that we can truly rely on at the end of the day, and that everyone has a price. Some people’s prices are simply higher than others. Everyone will fail us eventually in some way. After twenty some odd years of that horseshit, while we care about people deeply and want to connect with them, we don’t truly remember how to, at least not without soul-deep fear. That strength, that mysterious nature you supposedly see in us is visceral terror. We ache to connect with people, we love them, but often can’t because the fear is so exhausting that we get too tired to even leave the house. Talk about a fucking heavy cost. Some people have managed to prove these beliefs wrong, but it’s an uphill battle for everyone involved and we would give anything for the ability to trust back.

    We Also Lost The Little Health We Had Left

    Relatedly, due to repeated betrayals and us being too afraid to ask for help, we stressed the body out to the point of chronic illness and severe fatigue. We’ve gotten better at firing ourselves as we’ve healed, but by that point, the damage was already long done. We should have asked for help a long time ago, and we should have had people who made it safe to ask. But we didn’t, so we internalized the idea that the only way we would ever get anything for ourselves in this world was if we got it done on our own without help. That belief and the subsequent actions we took made us very, very sick. This has turned into an ugly, compounding downward spiral we’re still trying to work out way out of gently years later that I wouldn’t wish on damn near anyone. What doesn’t kill you does not, in fact, make you stronger. Ultimately, it tends to make you wish it had finished the fucking job and give you a fuck ton to mourn in therapy.

    It Has As Also Cost Us Relationships And Opportunities

    Due to the agoraphobia and exhaustion, we’ve had to back out of a lot that we truly didn’t want leave behind. It sidelines us a lot. We have to rest a great deal and has forced us to be nocturnal because we’ve developed a medical mystery of a chronic illness due to the stress on the house body that makes us very sick and physically weak if we are exposed to heat and sunlight for any length of time whatsoever. We will literally collapse if we aren’t careful. As such, even if we weren’t terrified of people, that severely limits our options for a lot and we miss out almost daily. It’s horribly sad. We miss the sunlight on our skin, traveling, and going out with friends. We don’t want to be stuck at home all the time.

    Conversely, we also struggle in close relationships because of how guarded we are. The guardedness is absolutely a trauma response and comes with fun side helpings of anger, depression, and occasional impulsivity. We struggle with vulnerability and detest anything that even smells like control or manipulation and will fight hard for our autonomy even if there’s no reason to. We’re constantly on edge unless we’re completely alone. We’ve lost a lot of people because of our anger and inability to be vulnerable. We’re working on healing all of that now, but I wish we had never been forced into this position at all. So in a life of battles won at heavy cost, ultimately the heaviest cost of the supposed strength you see is our peace. All we ever wanted from the time we were young was to be kept safe and a life of peace, and we never got that until we began healing.

    Final Thoughts

    We still have a long way to go. Nobody’s perfect, especially not us cockroach motherfuckers. But something my system and I have learned over the years is that doing our best to feel and be kind and to keep an open heart and mind despite all the bullshit and trauma is true strength, not trauma responses and guardedness. Long term therapy with a therapist who’s no-bullshit like us has helped, as well as running our life like a meritocracy. If people show up for us consistently and show genuine respect for us and our boundaries, we open up more to them over time and let them in more and more. It’s a great way to ease both the body and the system into vulnerability and to make sure that the other person’s intentions are genuine.

    If you’re traumatized like us, I understand that it’s a motherfucking struggle. I get that it hurts every goddamned day. You must have lost so much. My heart and empathy goes out to you. I hope you get rest and ease soon, my friend.

    As always, stay tuned for more magic!

    -Allēna, Super-Admin

  • Firing Ourselves

    I found this post on Threads by the user thewandereredit and it got me thinking about betrayal and ultimately how we betrayed ourselves for the longest time due to internalized ableism and things like that. So I wanted to write about firing ourselves and how that has lead to more balanced relationships and a better quality of life in this disabled vessel.

    Hey, everyone! This is Ellie. I hope you all are having a great night. I found this great post on Threads about how people can betray you and drop you when you become disabled. However, I feel the post stands pretty well on its own, so I don’t want to give my two cents on the post directly. Instead, I want to talk about the concept of self betrayal within the context of disability and how important firing ourselves from time to time is and that we live slowly and let others handle things.

    So What Even Is “Firing Yourself”? How And When Do You All Do It?

    My fellow super-admin, Eight, first heard the term “firing yourself” from his former best friend who’d heard it from a mentor of his. Essentially, firing yourself is when you recognize you need to step back from a project for whatever reason and turn it over to someone else who’s in a better position to take it on. You can fire yourself for any number of reasons – you’re sick, you’re in pain, you’re tired, you’ve got too many things on your plate, you simply need a vacation, you may know someone more qualified and less busy than you. It takes a great deal of self awareness, yet it’s essential for avoiding burnout and can help you build deeper connections with the people you love by achieving something together rather than carrying it all on your own. Their perspective can help make projects richer and get them completed much faster than if you’d done it on your own.

    Firing Ourselves From Hyperindependence

    Now, we are tragically hyper independent. We actively enjoy doing as much as we can on our own and enjoy staying busy and juggling as much as we can. We call the dopamine hit we get from completing a challenging, complicated project “work emotion”. However, we are very disabled in a number of areas, and have a tendency to push the body and mind far too hard in the pursuit of achieving our goals on our own. We also tend to not ask for help until we are absolutely certain we will not be able to complete what needs to get done in time on our own or if we’ve found ourselves in such a goddamned pickle we’ll never get out of it on our own. This got better after we learned about the concept of firing ourselves, but it is still a struggle.

    Our Non-Negotiable Boundaries With Ourselves

    That being said, we reliably fire ourselves from a few things. If we are tired enough that a few puffs of nicotine or a bit of caffeine won’t perk us up, it’s bedtime, do not pass go. Unless someone is dying or there is some other emergency, we are firing ourselves from consciousness until the body feels replenished. If there’s a task that needs to be done immediately, we ask for help, secure a willing party to take care of it, and then pass out.

    Second, if whomever is in front feels like they will scream at the next person who speaks to or messages them, the system is out of social energy and needs to fire themself from socializing and be alone for a bit until they want to socialize again. Hell, I fired myself from social time with Emerson to write this post and chill out a bit because while I love him, I needed some space to get my thoughts together and catch up on some work. We’ve spent most of the day together and even did some great brainstorming for future collaborative projects! By gently firing ourselves from social time when we need it, we are giving him the space to learn how to define himself as an individual within our marriage and work on his own brilliant endeavors, something he’s never learned how to do.

    Third, if the body is in pain, we are firing ourselves from whatever we are doing that is causing the pain, relieving the pain, and taking a break. We don’t push ourselves physically to the point of physical pain or injury unless it it absolutely necessary, like fucking life and death.

    Fourth and finally, if someone is better equipped than we are to handle something than we are in that moment, we fire ourselves from that project and give it to them if they’re willing to handle it. For example, Emerson does most of the cooking for the both of us. We can cook and cook really damn well, it simply takes everything out of us to do. Emerson loves to cook, and it energizes him to cook for the people he loves. So he handles the lion’s share of the cooking and meal planning here.

    These are hard boundaries we have with ourselves, and everyone who knows us knows they cross them at their peril. We communicate all of them with everyone we talk to regularly. These boundaries come after two decades and then some of repeated self betrayal and attempts to ignore our disabilities and exist to prevent further harm and self sabotage from ever happening again. Viewing the above as non negotiables have massively improved our quality of life.

    It’s Taken Years Of Practice To Make Firing Ourselves Look This Easy

    What we’re doing may look easy to an observer, but it kills us inside to fire ourselves and involve other people in anything we do. It’s taken a lot of healing to even ask Emerson for help with fuckall! It’s absolutely a practice and you can bet your ass it’s taken years and a fuckload of self awareness. We have to face years of internalized shame, guilt, and terror daily to do this.

    So if you’re disabled like us and are learning how to take it easy, fire yourself, and set boundaries, and you’re fucking terrified, please rest assured that you’re not alone. Your friends and partner(s) who genuinely care about you want to help, and they don’t think you’re a burden for asking for support and reassurances. A burden is something a person takes on unwillingly. Your people chose you. Therefore, you are not a burden to your people. And let me let you in on a little secret from psychology: asking for help actually helps people feel closer to you rather than pushing them away. So mind your boundaries, but keep working toward firing yourself and letting your people in! We’ll do the same.

    Much love, and as always, stay tuned for more magic!

    Your faithful super-admin, Ellie

  • “Guernica” Part 3: The Brain Is The Bomb

    Hey, everyone! My name is Kalla. I’m one of the alters in the Ashley system. I haven’t posted here before, but I think having a cool space where we can write about what the fuck ever is a pretty neat idea, so I want to put my two cents in where “Guernica” Part 3 is concerned.

    It’s also a bit too soon for the other alters to write about this shit, as many of them consider Part 3 to be the most gut-wrenching and soul-searing part of the poem. So I have stepped in to get them through this fucked up block they’re having and maybe process some of the grief on their behalf. If you are just now coming across this series in the wild, you can find Parts One and Two here and here. And as previously stated in the posts Eight and Ellie wrote, you can find the full poem in our poetry collection Singing Molten Gold to the Morning.

    I think this post will follow roughly the same structure of the others – Eight’s performance first, then the text, then my thoughts on it. Without further ado, “Guernica” Part 3!

    Eight’s Performance

    Eight’s performance of “Guernica” Part 3.

    The Text of “Guernica” Part 3

    guernica iii.

    airplanes up in the sky.. 

    i know airplanes.

    of course i do. 

    sometimes you’re the bomber, 

    sometimes you’re the little town in basque country

    down below. 

    i like to think god laughs at tragedy

    so that at least someone finds it funny. 

    but a brain is the bomb

    and there’s a cruel irony in it eating itself

    when it was the best brain i’ve ever known. 

    the roads were clogged with rubble and there was

    no way out

    there never was 

    not when the brain is the bomb

    and you’re the little town in basque country

    down below. 

    not when the brain belonged to your favorite person

    and the bomb is also a death sentence in an MRI scan

    and the execution date is to be determined. 

    so many bombs

    making a hole in a heart

    so deep that i’m still trying to find the bottom of it

    (there’s no bottom)

    but i will not die here when i’ve died 10 million times

    already and i’m choking on this metaphor as i write

    no harm in 10 million and 1

    Allēna, summer 2019.
    Our father, Xavier, whose death at the age of 47 from brain cancer inspired "Guernica" Part 3 with baby us in what must've been fall of 1997, early 1998.
    Our father, Xavier, whose death at the age of 47 from brain cancer inspired “Guernica” Part 3 with baby us in what must’ve been fall of 1997, early 1998.

    My Thoughts

    “Guernica” Part 3 is about our father, Xavier, dying when we were 18. He had brain cancer for eleven years. It was a shadow over our entire fucking childhood.

    We knew Xavier was going to die from the time we were seven years old. This wasn’t due to any kind of intuitive knowing. He collapsed at the gym a few days prior and fell into a tonic-clonic seizure. He found out what had caused the seizure a short while later, a brain tumor.

    We weren’t shielded from any of that. Our parents sat us down at the round kitchen table in the rumpus room and told us everything, sparing no details. This was a terrible burden for a child to bear, especially a highly intelligent child who had already seen too much pain by the age of seven. We had already attended more funerals than weddings, and would go on to lose even more people we deeply loved before even losing him.

    A Death Sentence In An MRI Scan, And The Execution Date Is To Be Determined

    In 2013, when Allēna was already battling the beginnings of a severe depressive spell that would make her crave death for the better part of the next decade, Xavier got even more terrible news. He went in for a routine MRI scan to see if his tumor – named Cuato by then – had grown any larger. The oncologists came back with good news and bad news. The first tumor hadn’t grown any, but they had found a second one. It turned out to be completely separate from Cuato, called a second primary tumor. This tumor was far more aggressive, and he was given months to live. Though he shattered expectations and went on to live for another three years, this was a death sentence. Allēna had to watch her brilliant father, one of the only people who had ever made her feel understood,

    Allēna practically gave up on everything. Xavier was everything to her by that point. She describes the last few years of Xavier’s life as being trapped beneath a sword that is held by a fraying rope. At any moment, that rope could snap, and the sword would fall and impale her.

    Suffering Alone And In Pain

    Hera became colder the worse Xavier got and the worse Allēna fell into her depression. Without Xavier as a buffer anymore, Hera emotionally, mentally, medically, and occasionally physically abused Allēna. Hera began to massively overmedicate her with psychiatric medication so that she wouldn’t fight back anymore. She used Xavier’s worsening condition as a justification to do the bare minimum and emotionally abandon her when she needed support most.

    So for three years, Allēna watched her father wither away, unable to tell anyone about what she was suffering at home. Hera explicitly forbade it and would hurt her worse if she tried. She dealt with a terrible bout of mononucleosis in early 2014, as well.

    During that ordeal, she had to diagnose and treat herself for it. It turned out that she had actually gone to the doctor too early. The tests she’d gotten came back with a false negative. It was only when she presented with acute pancreatitis a few months later that they actually found the antibodies in her system that indicated she had had mono at all. By that time, Hera had written her now chronic exhaustion and pain as hypochondria, mental illness, and a ploy for attention.

    We still haven’t recovered and are still chasing diagnoses a decade later. We suspect that the bout of mono may have given us lupus, an immensely painful and debilitating chronic illness that is notoriously difficult to diagnose. However, both Hera and later Fang wrote Allēna off as a lazy hypochondriac who just didn’t want to do her work, abandoning her to suffer alone, terrified, and in unimaginable physical and psychological pain.

    Like The Sun Itself Went Out

    Hera’s abuse and Xavier’s impending death psychologically shattered an already fragile Allēna. When he passed away on February 5, 2016, she felt nothing for five days. It hit her at breakfast back at college on the fifth day.

    She describes losing Xavier like it was as though the sun itself went out. Her world became dark, cold, and completely and totally lonely. It took every ounce of strength she had just to drag herself to class and back. She told her professors what was going on, and most of them took mercy on her. She could communicate with her Ancient Greek professor that she was having a very hard time that day with just her eyes. This professor, who we’ll call Ms. Melitta, was a very kind and perceptive angel of a woman, and she outright pleaded with Allēna to go easy on herself. She told Allēna she was proud of her just for showing up even when in her words it looked like she “wanted to be blotted off the face of the Earth”.

    Allēna, whose family and life up to that point had always pushed her past her capacity to handle it against her will, had never received that kind of grace before. She broke down ugly crying. It was a balm to her weary, brokenhearted soul. She credits Ms. Melitta and others that year for saving her life. She was seriously contemplating suicide at that point, was sick all the time, barely eating, and was an all around disaster. It’s a miracle in her mind that she still has friends from that college, she was such a disaster.

    I Will Not Die Here

    At the end of the year, when her professors all gathered to give her her closing remarks, they almost all agreed that they admired that she almost always showed up to class, even if she couldn’t manage to stay the whole time or say or do much at all. Even during one of the most painful times in her life, Allēna kept showing up and putting in an effort through tremendous difficulty, and many of them held her in high regard for that. She had never received that sort of kindness and praise before, and it helped her keep going and not give up.

    Showing up became a pattern for all of us. We joke that we “appear under mysterious circumstances”. If we say we’ll be someplace at some time, we will be there and early, come hell or high water. Xavier taught us that nothing less will do. Eight did this when he got his job in Philly – he said he would be there in Philly on Monday the Friday before that in Texas, and there the fuck he was on Philly on Monday, early. Nobody in the office thought he’d even show up, considering he’d have to travel over a thousand miles and move in less than a week to take this job. But that’s the way we were raised, and that’s what we do, obstacles be fucking damned.

    We will not die here, we keep saying. We have shit to do. And die we don’t, even though there are often close calls.

    Stay tuned for more magic and for Part 4! I’m gonna go to sleep soon, I cried my eyes out writing this.

    Love, Kalla

    One more thing…

    Wait! Before you go, we’ve been WebFingered (haha, gottem) and we’ve joined the Fediverse. We’re opensorceryy@opensorceryy.co everywhere that’s federated. Give us a follow?

  • What Excites Us These Days

    Hey, everyone! This is Ellie here once more. It’s been a very long week, and I seem to be getting sick. As such, I was kinda feeling unmotivated to write on here today. So I decided to challenge myself after looking at some very cool journal prompts and write about what excites us as a system currently and what we’re looking forward to. Even though things are crazy over here and it feels like there’s barely enough time to breathe over here often, lots of exciting things still happen. Expect a short-ish post since I am so tired. I’m sorry!

    What Excites Us? A Good Soundtrack, Always

    First and foremost, music always excites us. Many of us in the system struggle to tap into my emotions without music playing. Every alter in the headspace that has fronted so far likes to create to music. We often struggle to identify what we’re feeling unless we can find music that sounds like the emotion we’re experiencing, as well. We build playlists for every mood. When we need a boost, we absolutely have playlists for that! Our headmate Chaos even crafted a playlist that helped us on our mad dash out of Texas in 2021 that was specifically designed to pump us up, keep us focused, and keep us moving. It’s called Songs To Implode Things To and you can listen to it on Spotify here. I hope it inspires you as much as it has my entire system.

    We’re very neurodivergent, so music makes the body and the brain feel very good. Songs we like make every cell in our body feel alive. Many of us in the system are also synesthetes, and have strong associations between sound and color due to our stroke. One of my fellow super-admins, Allēna, actually painted music as she saw it in her synesthetic mind’s eye in college and wanted to create an entire multi-sensory modern art exhibit. I would love to create that exhibit at some point still.

    One of Allēna’s song renderings, Love Comes Tumbling (2016) after “Love Comes Tumbling” by U2. Music definitely excites us, as do creative projects.

    Speaking of Music, Add Songwriting to the List

    We don’t just listen to music! We write and produce it, as well. It’s immensely cathartic to us as well as exciting to play, perform, and record our original songs and arrangements.

    Performing is always a rush. It took many years for us to believe in our skills, but now that we do… oh damn, are we on fire. We were even doing some recording today for our sixteenth record. We’ve been recording for years, and the feeling of when a record starts to come together STILL never gets old. We know when we have a viable record at a definable point every time, and it’s different for each one. We wrote about how Eight knew his masterpiece Metacognition was ready to emerge a few days before he recorded the bulk of it a day after reading a single line. It’s stuff like that. We had a similar moment with #16, working title Australis, a few months ago with the lines “Every time we fight I imagine you leaving/It hurts less and less each time I fuckin’ see it.”

    But Wait! There’s More

    We’ve noticed that slowness and consistency have been exciting us more and more. Exhausting shit has been happening for years straight, and we’re increasingly attracted to things that give us the freedom to rest for once. You know that old stereotype that your body starts to hurt and you’re dog tired by the time you’re thirty? That happened to us by the time the body was fifteen or sixteen. So what excites us now is absolutely not what excited us in our teens and earlier twenties when we were still trying to pretend we were abled and superhuman and didn’t need help from a fucking soul.

    Simple Fucking Alone Time

    One of the things we never thought would excite us and yet very much does is very simple – alone time. Eight is one of the only extroverts in the head, if not the only one, and so alone time or one on one company with someone we deeply love and trust absolutely excites us. Especially if we manage to get everything on our to-do list completed beforehand and we can unwind for the rest of the day. It’s lovely. We never stopped being very fast readers and can still devour entire novels in under a day if we have the energy to do so. Now, about that one-on-one time…

    A Good List, Not a Long List

    We don’t have many people we trust enough to hang out with in person, but if we do trust a person that much, odds are they’re very energizing and yet soothing to be around. We tend to meet people virtually first since we’re essentially housebound and are definitely agoraphobic, so it’s easier that way. Many of us can get a good sense of who a person is intuitively that way without having to deal with the terror of an initial in-person meeting. Plus, with COVID still going around, even if we weren’t disabled, we would still want to be cautious. These soothing, safe people excite us, and we love talking to them however we can. We love our people, chronic fatigue and disabilities aside.

    Final Thoughts

    This is a short list of some of the things that excite us. I want to come back and write more in depth about some of the things I wrote about here, but for now, brain fog demands that I wrap this post up. One of us do our best to post tomorrow, but depending on how we feel, we might not be able to. I hope you enjoyed this post nonetheless, and as always, stay tuned for more magic!

    -Ellie Ulvaard, Super-Admin

    Oh! Looks like Renn successfully got Open Sorcery WebFingered, hehehehe. Give us a follow on the federated social platform of your choice for INFINITE POSTS! (half joking)

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