Tag: disabilities

  • The world is a lot right now.

    In all honesty, our phone is on Do Not Disturb to avoid the constant onslaught of news and we are messaging very few people to preserve spoons.

    One of us (I forget who) saw a post a few days ago that talked about how a therapist was saying that a desire to build an off grid self sustaining farm and never come back to society was a manifestation of exhaustion and burnout, and whoever it was felt so called out that they almost started crying.

    You don’t say that it’s a manifestation of exhaustion and fucking burnout, anonymous therapist! Society is fucking exhausting! Why do you think I rarely front around most people? They fucking exhaust me and burn me out!

    I would do unholy things for an off grid, self sustaining farm if this body weren’t fucking allergic to the outdoors.

    I know my body couldn’t handle the work to maintain it, let alone the lack of infrastructure, etc., and that  fucking kills me. So I settle for being a housebound art gremlin in the city with hopefully half decent OpSec.

    No amount of money can fix this particular yearning of ours, sadly. What’s the point of having money to buy land for a self sustaining farm if you can’t fucking work the farm without killing yourself? And what’s the point in having money for a farm even if other people you love lived on it with you if you can’t go outside eighty percent of the year to enjoy it? Even if I wanted to simply sit outside, it would hurt me too badly for most of the year than the enjoyment would be worth.

    Unfortunately, we’re learning our limits, and that comes with a fair amount of grief.

    Fuck. This hurts. This hurts so bad.

    I’m gonna go grab a snack and nap or make art or something.

    -Castor

  • Chrysalyzed

    Hi, everyone! I’m sorry for going kinda dark for these past couple days. My brain has been kind of tired from this past week, so I have been resting until I felt up to writing again. I went to Emerson and told him about how bad I felt that I hadn’t been writing due to exhaustion, and he gently reminded me that we had a standing agreement to blog together on Sundays, so a post would happen today, at the very least.

    This is indeed happening as I write this, he is sitting beside me eating some leftover pasta from last night’s dinner and working on a post of his own. I think we may be using the same prompt, in fact. Our mutual prompt question, if we are in fact using the same one, is something to the effect of “what was a time that you learned something about a loved one that changed your perception of them?” I’m sure I’m not quoting the prompt question verbatim, I’m still very tired, but you get the picture.

    There are many occurrences I could think of with others, too many to count. The majority of these were profoundly negative, as well. Both myself and my former headmates have written enough about my tragic fucking backstory for y’all to get the point, I think. So instead of doing that and pointing fingers for the umpteenth time, I want to write about crashing and burning in 2022 like I mentioned in this post. Because ultimately, I am starting to love myself, making myself a loved one by technicality, and this massively changed my perception of my abilities, what a beautiful life looked like, and what sorts of things were possible for me.

    In 2022, I was a dead person walking who didn’t realize it at the time. I was largely bedbound from that bout of COVID the past winter, and had surrounded myself with people who consistently expected more from me than I was able to provide, which just threw me further and further into burnout.

    I had committed fully to polyamory in autumn of 2021 before getting sick for a month, and my polycule was just as messy or even messier than I was. At its largest point, I was dating twenty people simultaneously.

    My mind was shattered from two and a half decades of trauma, I was somewhat openly plural, I was in excruciating mental and emotional pain, and I was in the thick of the final act of the  infamous Operation: Dead Hand, as well, wherein my mother, Hera, was plotting to steal my biological child from both myself and my best friend using Texas’ court system. I couldn’t realistically manage any of it. Despite being surrounded by people who claimed to have my best interests at heart, I had never really felt more alone.

    I did my best to appear to the outside world like I was holding myself together, afraid that Hera would take anything I posted or any information that got back to her through the grapevine and use it against me to further her case and maintain control. I was deeply afraid of vulnerability and betrayal for very good reason. So, with my back against the wall, I tried to carry all of my own stress and terror and that of my polycule alone while asking for as little help as possible.

    All of that came crashing down when one of my partners at the time, Kira, moved in with the partners I was living with at the time, claiming she had nowhere else to go. She was just as cunning a plotter as Hera and myself, and she quickly tried to get her hooks in as many of my partners as she could. By the time I managed to drive her out of town, she had manipulated her way through a solid half of the polycule, which was a staggering feat considering how guarded I was. But she underestimated me, judging me for a helpless, crippled simpleton who had no idea what she was doing, and I got her out of the area in the nick of time.

    However, I was teetering on the edge of a total collapse, and Kiragate, as this roughly month and a half long ordeal came to be called, took any remaining energy out of me. I went on vacation to Binghamton, New York at the end of October, and spent the majority of that trip in a crossfaded stupor. It was nowhere close to my finest hour.

    However, around that time, I had reconnected with an old flame I had met when I first moved to Milwaukee. We’ll call her Leigh. I told her all about what was going on, and she expressed regret that she had left Milwaukee, because then we could have hung out. It turns out that she was living in Madison, about a hour and a half away.

    Leigh and I had parted on strange terms. Her partners had tried to run me out of town the winter prior, and she spun it as though she had had no say in that decision and that they had read our quick closeness as a threat to the power they had been building at her expense, as they had been on the rocks for some time. However, by that point they were out of her life and had fucked all the way off to Denver, Colorado and were doing gods know what out there.

    She was lonely in Madison, and I was still very fond of her and was deeply dissatisfied with the way things were going with the partners I was living with and had been for some time, even before Kiragate.

    Kira had simply taken advantage of the existing problems that were there before she had arrived and in essence held us under occupation and exacerbated them. It’s a tactic as old as time, and she did it masterfully. So I wanted to get the hell out of that shit show, hopefully for good, rest up, and build a better life with Leigh. The original plan was for her to move back out to Milwaukee, but in the interim, she was bound to a lease in Madison, so I was going to split time and we were going to travel back and forth to see each other.

    So, Leigh came out to visit for awhile, and she quickly began to encourage me to come out to stay with her awhile as I opened up to her more and more about what was going on at home. Finally, after a particularly nasty fight with one of my partners, I packed enough shit to get the fuck out to Madison indefinitely, hopped on a bus with Leigh, and headed out.

    However, before I did that, I sent a quick message to someone who’d been asking for me to find a way to Madison to meet up since earlier that year, another very cunning individual who we shall call Stregobor. He was good at long cons. So good at long cons, in fact, that I didn’t know he was a fellow magic user until I was already dating him. I was equal parts  desperate and charismatic, and Stregobor was a suitor who was one of, as I like to say, my “decisions of all time”. A mistake, in other words.

    I was originally only intending to stay in Madison for a month. However, once I started dating Stregobor and Leigh found out exactly how good I was at saving her ass and meeting new people, that month turned into about two. Stregobor started coming by a lot and Leigh adored him.

    He was also polyamorous, so shortly after we became partners, we added each other to our respective polycule group chats. This turned out to be a mistake on Stregobor’s part. Through his group chat, I met his spouse, who I was initially wary of because of my deep trust issues and agoraphobia. However, this absolute delight of a human being quickly won me over despite my terror, and I adored him. He quickly became one of my best friend. We will call him Peregrinus.

    Now, among Stregobor’s many hobbies, which also included reading excellent dark, urban fantasy books and being both a dungeon master and player for tabletop role playing games, he also enjoyed talking shit about nearly everyone in his life. Peregrinus was not safe from this asshat behavior, and nor was I, I’d come to find out. The only one he didn’t disparage behind closed doors was his sister, and I suppose everyone has to draw a line somewhere. From what I have heard, though, she is worthy of that care.

    Because I had spoken to Stregobor first, the first part of my friendship with Peregrinus was confusing because of all of the utter horseshit Stregobor had been saying. Peregrinus was not how he had been painted at all, and he was in fact made of very strong, upstanding stuff when it came down to the wire. He was funny, sweet, and I adored him.

    We got especially close one night when he was bored at work and invited me to come hang out for the end of his shift. I didn’t do that sort of thing at the time. Not at all. I was terrified of new places and new people, and this was definitely a newish person in a new place. But as soon as I was about to sheepishly refuse, I got the overwhelming sense that I needed to go.

    We were already supposed to hang out later that week, we were going to meet up for coffee. There were firm plans. I liked firm plans. Firm plans were safe. This? This was foolish, reckless, and at this point I was learning that recklessness without some kind of a backup plan or preparation was what kept getting me fucked up in life. But I also knew that I shouldn’t ignore it when I got the overwhelming sense that I was supposed to do something. That was a clear sign that that something, whatever it may be, was important.

    So, wondering if I was crazy the entire damn time, I jumped into the shower, called a Lyft, packed enough energy drinks to stay upright and decently awake, told Leigh I was going out for a bit, and went to Peregrinus’ work. I was so fucking nervous the whole way there, and spent the entire ride debating what I was going to say to him first. I finally settled on a classic one liner – “come here often?” – and swaggered my tired ass into the lobby.

    The conversation was amazing. We talked about so many things for fucking hours. However, after I was able to effortlessly summon a little alter of Peregrinus’ to front after he swore he was not plural, no less, I decided to try something. Peregrinus had an original character that he used to roleplay as from time to time, so I tested a theory I had that he was also an alter.

    I said in the most seductive tone I could muster, “Hi, Michael…” and lo and fucking behold, the bitch himself came straight to front. The first words out of this man’s mouth were “if I could take you home with me tonight, I would.” I was very, very flustered and very full of queer panic. He was such a flirt. I was honestly smitten.

    But the real piece de resistance came at coffee later that week. Michael wanted to front, and front he did. He set everything up so that he guided me down the stairs of this multi-level coffeeshop like a fucking Disney Prince. I was fucking floored. I had died and gone to queer heaven. I was starting to wonder if I had to go back to Milwaukee between Stregobor, Michael, and Peregrinus.

    Leigh and I were on the rocks at this point, and I had no idea that Stregobor was talking shit about me yet. Nor did I really know Peregrinus well enough to determine if what Stregobor was saying about him was accurate, but it made me uncomfortable, so I wanted to observe for longer before making any judgments.

    I started dating Michael after that coffee date, and both he and Stregobor began to gently push me to consider staying out there in Madison with them rather than splitting time as originally planned. I was exhausted, and becoming more so by the day.

    One day, I finally had enough. One of my partners, whom we shall call Sol, had been bitterly heartbroken over my ex best friend, who was also dating her. I didn’t want to get more involved in the drama than I already had been, as I had seen this coming since March of 2022, warned him about it, he didn’t listen, and shit had begun to spiral from there on out on top of all the other shit I had been dealing with.

    I didn’t like what either of them were doing to each other, nor did I like what my so called best friend was doing to me, so I decided to throw my weight behind  neither side and let the chips fall where they may and attend to my life closer to home, as all of this was happening states away.

    After I broke things off with Leigh, the polycule schismed and broke roughly in half, with the half that Leigh and Sol had bonded with going with her and the other half staying with me. Leigh kicked me out afterwards, understandably, leaving Stregobor, Peregrinus, and myself to urgently gather my shit and scramble for a Plan B, as none of us wanted me to go back to Milwaukee by that point. Stregobor had his best friend/hired gun of sorts scoop me up and deliver me to the hotel where he was working under the table for the next week to regroup and figure things out, and off I went.

    It was during that regrouping phase that I opened up more to Stregobor about what had happened both during Kiragate and what was going on and with Operation: Dead Hand. The masterful ending move of Dead Hand was actually his idea – write to Hera’s lawyer and tell her that I want to sign away rights to my child so that Hera can adopt him like she was claiming she wanted to, because we knew something Hera wanted nobody to know.

    She was planning on giving my child to a family she knew in Utah that nobody in her family knew or trusted because her husband had threatened to leave her if she planned on raising my child. The lawyer would be handed a win on a silver platter, take the deal and run, and Hera’s family would crucify her for even attempting such things because they were already attached to my child and had been from birth. The family would eat itself and I would be free to go.

    We hashed that out, got some good rest for once, and made an interim plan going forward. When we came back to Madison, I took up temporary residence at Peregrinus’ apartment, where I started work on finding a permanent place to live via connections I had made through another of Stregobor’s partners. However, during that time, I bore witness to how badly Peregrinus was being treated by his other partner at the time, a man who we will call Ladron. Ladron was a walking bag of insecurities and wrath who was a lowlife with nothing to offer and knew it.

    These insecurities mostly came out in the form of rages, but occasionally came out in the form of tearful emotional manipulation. This was a man who knew he wasn’t shit and I watched Peregrinus take the brunt of his issues. However, I knew I would have to tread carefully if I wanted to get Peregrinus out, as past experience showed that speaking up about it forcefully from the jump in front of Ladron would only end in more pain for all of us. I needed to get to safety first, at the very least.

    I found a room in a place nearby, moved in, and started befriending my housemates, who felt safe for once. I felt safe. But then, around Peregrinus’ birthday, we found out that my housemate had given us COVID. So Peregrinus had to shelter in place at my apartment for a couple weeks and found that he felt much safer with me than at his place.

    It was during that quarantine period that I first witnessed Stregobor talking shit about me, and after all of the nonsense with the schism and watching Peregrinus taking Ladron’s hits over and over and then by contrast, Michael, Peregrinus, and my kind housemates treating me exceptionally well, I decided I had yet again had enough. I fucking deserved better. So did Peregrinus. So I officially asked him to stay and live with me. By some miracle, we made it happen. We were both safe. Peregrinus and I ended up breaking things off with Stregobor, and I didn’t have to go to Milwaukee after all.

    I stayed in Madison for another four months or so. Peregrinus noticed my exhaustion and started gently, yet firmly telling me to rest and handle more things. It was a swift kick to the ‘nads to all I had ever known, and it was brutally emotionally and mentally painful.

    My body had started to collapse so thoroughly from the stress of everything I’ve written about here that I had become for all intents and purposes allergic to sunlight and incredibly intolerant to heat. I firmly believe I was dying, and I very likely was. However, Peregrinus was a stubborn little ram, and stepped the fuck up.

    He didn’t stop, either. He nursed me back to health and in many ways, brought me back to life. I saved him, and in return, he saved me. Later, from that same plural system, Emerson emerged. He has the same indefatigable iron will, and we still take care of each other. He tells me to sit the fuck down when I need it, and vice versa.

    I still work fucking hard for my people, I just don’t do it to my detriment anymore, and I value my time, energy and life enough to not write myself out of the equation anymore. I am learning to truly love myself and love my life for the first time, disabilities and limitations and all, and I couldn’t have done it without all the bullshit I alchemized along the way.

    I think that’s enough for tonight. Stay tuned for more magic, dear people. I love y’all, and I hope you love yourselves, too, as best you can.

    -Lazarus, Master of Bullshit, Sorcery, and Ceremonies

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  • My Body Is A Cage

    Hey, everyone. Allēna here. Lately, I’ve been grieving the fact that the body is so disabled. Therefore, I don’t know how hopeful or positive this post will be, but I can promise that it’ll be honest.

    I was never abled. After having a stroke so young, I was always an odd duck. However, I could always fake being abled a whole lot better when I was younger. I could…power through better, so to speak. I know now that just because a disabled person can sometimes power through something, they really fucking shouldn’t. But I miss the days when I even could..

    I had to learn how to dissociate from the body and power through tasks that would otherwise be horribly physically painful (and often still were) in order to escape further abuse from my mother, Hera and thereby avoid becoming so burnt out I stopped functioning at all.

    I was going to hurt either way, so I might as well take the less painful option and give her hell on the way out, using my wrath at her as fuel. The extent to which Hera wanted my system to appear normal included refusing to accommodate our neurodivergence or even acknowledge it existed at all, except when it suited her. She chose instead to take a “my way or the highway” approach. So I was fucking pissed enough at her that my system and I ended up choosing the fucking highway.

    This crippled the body further, as we had to haul ass even harder to survive, despite hauling ass as a baseline for over the past decade. We were beyond burnt out, and when we started working through our trauma, we started to feel it deeply. Eight, who was our host at the time, could often barely get out of bed for weeks at a time. We’ve improved a great deal since that point, but we’re still largely bed and housebound due to chronic pain, fatigue, and agoraphobia.

    This makes me horribly sad a lot of the time. I’m still working on getting diagnoses and treatment for everything that’s ailing me health-wise, but I just want to bitch for a second because I’m in my feelings about it, even though solutions are very much in progress. I had gotten so good at powering through after college that I was training for a marathon and was often swimming, as well before the body rebelled, and I don’t know if I’ll ever be able to run cross country or swim outside again, seeing as the body takes psychic and physical damage whenever it’s outdoors for a number of reasons and we are, in essence, allergic to the sun. And I know that listening to my body and meeting its needs is more important than powering through in any situation, but it just… bugs me and upsets me to a huge degree. Ah, well. One day at a time, I guess. I’ll get there. ✨

    Stay tuned for more magic, y’all.

    -Allēna

  • Cheating Death (The First Couple Times, Anyway)

    Hey, everyone. This is Allēna, your ever-gracious super-admin (just kidding). I am here today to tell a special story by request of a friend. This is the tale of how we very nearly died the first and second times. We are masters at cheating death, and have quite the tragic backstory. My colleagues have also mentioned the fact that we had a stroke a few times. This post is the story of the stroke, or as we prefer to call it, the Brainhole. Now, I know that this is a crazy story. You might be tempted dismiss it as bullshit without witnesses or corroborating evidence. This is more than understandable. However, I have accounted for that and gathered some.

    Apparently, we have followed in our father’s footsteps in a number of areas, and this blog is one of those areas. Our father, Xavier, maintained a website of his own for many years until his death in 2016. Eight accessed his account of our hospital stay leading up to the Brainhole incident in 1998 via the Internet Archive late in 2021. Although he has drawn the curtain and gone to sing with the choir invisible, he is our eyewitness for today’s tale, no séance required. Quotes from his account will be in italics.

    Now, how the fuck were we cheating death as literal infants, you may ask? It all began with an unfortunate predicament known as viral myocarditis.

    We Started Cheating Death Young When A Virus Attacked Our Heart

    Xavier explained what happened best, so I will let him tell it. He wrote on January 27, 1998, at 3:00 in the afternoon:

    Just wanted to let you know. My daughter is in children’s hospital in Dallas with acute myocarditis-an inflammation of the heart. It appears to be viral, and the prognosis can be good, but we will not know anything for 4 or 5 more days.

    We will be up at the hospital for a while, so I won’t be current on my e-mail, but I will probably come home now and then and post updates.

    We took her to the doctor’s office Monday morning at 9:30 because she had not been taking in fluids voluntarily for about 48 hours, and vomiting occasionally. She had a viral infection about three weeks ago that probably suppressed her immune response, and then contracted another virus that began to attack her heart muscle. Right now, the myocarditis seems to be principally viral in nature – as opposed to congenital, or congenital in combination with a virus. This is good. She is heavily sedated, and they have her on a ventilator. She can breathe on her own, but they are trying to let her dedicate all of her energy to fighting the infection. She has had two little transfusions (just to boost her hemocrit and hemoglobin levels by adding more red cells).

    Stubborn Little Shits

    We were admitted to Children’s in Dallas on January 26, 1998, Super Bowl Sunday of that year. Things quickly went south from there, though, and the doctors hooked us up to a heart-lung bypass machine so that our heart could rest and the machine could pump our blood for us. They initially estimated that it would only take about four days, but it quickly turned into a terrifying ordeal for all involved because we are stubborn little shits that kept fighting the damn sedatives. So it quickly turned into a game of hurry up and wait.

    Eight quipped when he read through Xavier’s account the first time that he could make a drinking game out of it: take a shot for every time they had to chemically paralyze the body. You’d be absolutely hammered by the end of it. We got so good at fighting the sedatives that our medical team had to start putting us on some crazy dosages to even attempt to keep us down.

    According to everything we were told growing up, we were on enough meds combined to knock out every single adult present for an untold number of hours. Xavier himself mentioned that a single one of our boluses (boli?) would incapacitate him for ten hours, and he was not a small man. We also had to be restrained by tiny handcuffs because we’d wake up, wiggle, get pissed off, and try to grab shit. Additionally, Xavier wrote in his account that we had to be put on methadone to ease the withdrawal symptoms from the painkillers they had us on. We were not going to die, by gods. We were cheating death every goddamned day. No day more so than February 23, 1998, a day we now “celebrate” annually as Brainhole…

    All Hail The Motherfucking Brainhole

    After getting off of heart-lung bypass and weaning off of most of the meds, we had a sepsis scare. Now, the scary thing about heart-lung bypass is that there’s a very high risk of stroke if things go wrong because the procedure uses a carotid artery to even work. After we were all finished with the heart-lung bypass, they had to clamp and tie off the carotid artery they used. They used the one on our right side. Shortly afterward, there was a sepsis scare.

    Xavier tells the story of what happened best because he was there and documenting everything that happened, so I’m going to let him do the talking again. He wrote the following day, February 24, 1998:

    “Brief synopsis of yesterday. It doesn’t look like it was sepsis. She got

    better too quickly for it to have been sepsis. She responded well to the

    intubation and the medicines, but the staff feels that this was an example of

    how little cardiac reserve she has. In short, her heart was tested, and it

    did not do very well on the test. 

    We met again with Dr. Fixler, the head cardiologist on the transplant team.

    He informed us that [Hera] and I have the option of increasing her status on

    the transplant list. Basically, if [Hera] and I feel that a transplant is

    inevitable, we can ask that they not refuse a heart that is available.

    That was yesterday. 

    [Hera] and I went home to get some decent sleep last night and left

    instructions to call if anything happened. They called us at 3:30 a.m. to

    tell us that she had taken herself off of the ventilator by pulling out the

    tube. Her oxygen saturation level was fine, and she was breathing on her own.

    Considering that [the cardiologist] wasn’t sure if she could

    ever make it off of the ventilator, we took this as good news. 

    [The cardiologist] called at 7:30 this morning to say that [birth name] has apparently had

    a stroke. The movement on her left side is diminished. The theory is:

    [birth name]’s heart function is such that there are areas where the blood doesn’t

    move as effectively as it should. When the blood pools, it has a tendency to

    clot. A clot (or a piece of a larger clot) that had formed in her heart broke

    free and plugged one of the vessels leading to her brain. Considering that

    the major artery to the righ side of her brain is severed and tied off, the

    clot either passed through the other artery, through the Circle of Willis, and

    lodged in a vessel. Either that or it passed into one of the collateral

    vessels on the right. They are not yet sure what the extent of the damage to

    her brain was as yet. They are performing an echocardiogram to determine if

    there is another clot in her heart, and they will perform a CT scan right

    after. After that I we talk to the neurologist and find out what has

    happened.

    Names in brackets have been changed for privacy purposes.

    The initial scan showed that we had lost up to half of our brain. However, a scan a bit later and an MRI in 2009 showed that it was only an eighth. We lost much of the sensory processing center in our right brain. It took years of physical and occupational therapy to be able to use the left side of our body even slightly. We still have trouble eating and sleeping. Our arms are noticeably different lengths, and we can only move three fingers on our left hand independently of the others.

    Cheating Death and Betting On Ourselves

    However, doctors thought we’d never even recover to a fraction of the extent we did. Nor did our own parents. Hell, Xavier even jokes in his next post about what sports we might be able to play with only one side of our body. Nobody really ever bet on us until adulthood. However, we always bet on ourselves. I went on to run a 5k in college and was an avid cyclist. I played basketball and bowled throughout high school. Eight and I were even training for a marathon before chronic pain and fatigue sidelined those dreams.

    And though we were singing before we could talk – before the Brainhole ever happened – nobody thought we would ever learn an instrument, either. To hell with that bullshit. I fight people’s expectations of me just as hard as the tiny system fought those sedatives all those years ago. I went on to teach myself piano and ukulele, learned to produce records, and my headmates followed suit. To date, we’ve collectively produced fifteen records (that we can find). We’re hard at work on our sixteenth release. Moral of the story: if anyone tells you you can’t do something, flip the fucker the bird, then do it sixteen times and take pictures. These are the rules. I don’t make them. I just follow them.

    Mirthy very belated Brainhole to all, and as always, stay tuned for more magic!

    -Allēna