A new mutual on Bluesky messaged and asked about the brain damage and identity issues I’ve mentioned, and I realized I haven’t actually posted an explanation publicly in a while. Since I’m probably going to either take this website down or change the name of it due to the ongoing happenings, I figure I ought to catch up anybody who keeps up with me just through here.

It’s hard to write it out coherently—it’s hard to even *think* coherently—but I’ll try. Please forgive me if it’s kind of jumbled, or I repeat things—no matter how cogent I may come across, trying to communicate still feels like putting what I want to say into Google Translate, turning it to Sanskrit, then copying and pasting that Sanskrit translation into Google Translate and turning it to Japanese, and then copying and pasting THAT into Google Translate and telling it to give it to you in English. It probably has a lot of the same themes and concepts as the original texts, but they’re also *probably* not going to be expressed super coherently, and some of them might just miss the mark entirely. 

But that’s what I’m working with, so that’s what you get! Sorry. 

Basically, in 2017, I had a series of strokes caused by systemic blood clots from a genetic condition. I was having those strokes for between 4 and 6 months before doctors finally believed me enough to look hard enough to figure out what was killing me. Even then, I got no rehab or disability assistance or roadmap to what to expect, or even a coherent diagnosis and write-up in my chart that would’ve allowed me to get disability, just a week in the hospital and a lumpy scar from where they left the IV in wrong for 5 days and the warning that I “shouldn’t try to have kids without talking to a doctor about that clotting disorder.” 

(6 years later, in a state that actually cared about my life over the life over a theoretical potential fetus, I was told by 2 different OBGYNs and my GP that trying to carry a pregnancy to term would absolutely, unequivocally kill me, and likely also the fetus, and that if I wanted a child, I should consider adopting, because these genes aren’t kind to pass on, especially when we don’t even know what prompted their attempt to suddenly start trying to kill me from the inside.) 

Over the next few very foggy years, with no rehab, no medical oversight, no guidance, because medical care in the American South is garbage, I stopped being able to even pretend to be okay. 

People thought I was recovering and getting back to alright, because I could move and speak, but they wouldn’t really listen when I tried to explain that the words I was saying weren’t the ones I was trying to say, weren’t conveying what I needed them to, couldn’t understand when I said that I was talking but not communicating. 

Loved ones kept telling me—like they were trying to be encouraging, but every second of it felt like gaslighting—that I was still smart, still talented, still articulate. 

No one listened when I said that *wasn’t the issue*, that having a big vocabulary didn’t mean the words coming out were what I was choosing, that I couldn’t *think* clearly—and to be fair, I probably wasn’t communicating any of THAT very well, either, because, as I said, I wasn’t able to say *any* of what I needed to say in a way that anybody who loved me seemed able to understand. 

My relationship with my family, born and found, drastically deteriorated during that period—to them, I was suddenly erratic and angry all the time, irrationally vicious, and my inconsistencies and the way my brain was skipping around through time like fucking Brigadoon made it seem like I was lying to them, or buying things I shouldn’t be, or doing inexplicable stuff, or pushing them away. 

I kept trying to beg them for help, *scream* for help, and…my dad would invite me over for pancakes, hug me, feed me, and send me home, like everything was normal and fine. Even when I cried and tried to talk to him about what a hard time I was having, he seemed to blame my husband instead of my body, no matter what I said. 

My mom had moved to Canada, and I never saw her, except when we met up for a “vacation” with my grandma, which ended up being the final one I ever took with her. I spent the whole time having screaming fights with my mom because she was treating me like a healthy person, asking me to do things I hadn’t been able to do in over a year, when I’d been functionally bedbound for 2 years and couldn’t even feel my extremities, when I was actually significantly sicker and more physically unstable than my grandma. 

I was experiencing constant lingering symptoms from the strokes—ones I’m blasé about now, like my perpetual vertigo, my new inability to drive, my constant nerve pain, my intermittent and inconsistent aphasia, my migraines, my time skips, my dissociative fugues, my panic attacks, my ptsd flashbacks—but had NO LANGUAGE for them yet to tell anyone what was happening. (I will never get the last few years of her life with my grandma back, or be able to say what I wanted to say to her in the years when I was least able to communicate. It’s so scary and confusing to wake up and find out she’s dead again *every day*, that she’ll never be there to hug me or help me again. It felt like I was asleep when she died.) 

Sometimes I would just break down into wordless screams because I was so overwhelmed and terrified by the experience of what was happening to me and how impossible it seemed to get anybody to understand. My mom said she was afraid of me. 

I tried, as hard as I could, and kept trying to see new neurologists and specialists all the way up til the pandemic—I didn’t understand how NOBODY around me other than my fiance/husband was seeing or hearing what was happening to me. 

I started to hate every single person around me (other than him) for—*it felt like*, even if I can recognize now that it *wasn’t*—willfully ignoring me collapsing inside myself. I felt like I was on fire and screaming and nobody would even piss on me to put it out, let alone actually help me. 

I summoned all the last bits of my brain that I could find, made one last, big push, and tried to move us to Canada to get better healthcare, and I *almost succeeded*—but *just* as we were about to slide into a new life there, the pandemic hit. The town we moved to collapsed, life as we knew it collapsed, and nothing was ever the same again.

In the isolation and terror of lockdown, my subconscious fully gave up. 

I came to believe that I had actually died in the hospital in 2017. 

I thought graduating grad school and getting married was my brain’s final, happy dream, and that the pandemic and the lockdown and the nonstop horrorshow that life became was just my dying brain collapsing. I thought that my godmother Kathryn and my grandma—the only two supports and sources of counsel I had who would reliably tell me things I wasn’t expecting to hear and couldn’t have come up with myself—dying was my brain coming up with a reason for not being able to generate content from them. 

I didn’t even realize it at the time—didn’t realize until much later, when I was living in Denver and getting some semblance of actually-competent medical care—but the worse things got, the more and more *sure* I became that I was dead during that time. After all, a global plague that keeps you from being able to hug your friends and never actually ends, and Nazis taking over America in the 2020s, *sounds* like the nonsense of a dissolving brainscape. 

All my decisions became about how to make myself something like at peace before my dream dissolved entirely and I ceased to be. (That mentality is what led me to Denver. If I hadn’t been sure I was dead and dreaming, I never would have come here. I’m glad I did, or I think I would’ve stayed dead until I died.) 

During those years, their desperation and confusion, the last scraps of the person I’d been up til the strokes, Alena, broke up and drifted away like old snakeskin, and I, Astrid, came to awareness like a kid waking up from a nap. 

Once I got to Denver and got to a better doctor and got to talk to people and got some *language* for what had happened to me, things became clearer. In addition to the physical issues the blood clots (which were in my whole body, not just my brain) had caused, as I started to “recover”, we found I also had mental gaps. (I had known this, but demonstrating it to others and finding language for it was crucial.) Over time it became clear they weren’t just little gaps, they were holes left by the strokes, then widened by isolation and trauma. We’ve done neurofeedback therapy and brain mapping and skill testing and a bunch of stuff since then, and a lot of talk therapy, just to figure out the situation we’re dealing with now and where to start with it. 

In many ways, I am mostly the same kid Alena was, like if you’d cloned her brain at age 4 and left the clone childbrain in a jar like a backup save to revert to in emergency. 

During those isolated years, as it became clear that the original brain was USELESS SOUP, the cloned childbrain took over for the obliterated original’s brain, but it took me quite a while to figure out *that* was what was happening. Cloned childbrain isn’t SHATTERED like the original brain, and the original brain’s saved memory files (some may be corrupted or out of order) have been uploaded, and the personality and goals and skills also tried to upload, but the brain trying to run them is still just a cloned childbrain, and all that stuff didn’t really make it very intact through the transfer. 

She (Alena) had one brain, with one electrical map and skillset and coping mechanisms, and I have a different one, cobbled together by the amazing elasticity of the human brain, but it’s sort of like starting over as a kid. (My therapist pointed out at one point, somewhat devastatingly, that if I had been age-regressed by the strokes—as indeed I at least partially had been—nobody would even notice, because as a child, everyone had basically treated me like a tiny adult, because I spoke like an adult, and if I were acting like my child-self again now, the only clue people had previously had to treat me like a kid, my kid size, would be gone. She was exactly correct, and that led down a rabbit hole I’m still working through.) 

Luckily, though, as an autistic, my brain didn’t experience the same neural pruning in adulthood that neurotypical brains do! So at least one of my disabilities means that I literally have more of myself left to work with than most people would after having a bunch of strokes on both sides of their brain! 

I’m sort of like…if a tree gets struck by lightning, and the whole top gets blasted off, but there’s a couple branches lower down still, branches that didn’t really get a chance to grow in the shade of the big, thriving treetop branches that were Alena’s brain. But when all those big branches got blasted off, the little branches left below were all that was left. The tree is still alive, and those little branches have a chance to grow, now, a chance they wouldn’t have had before, and over time, they *become* the tree. But it is, in many ways, even though the roots and the trunk are the same, a very different tree. Even if someday, the little branches grow into big ones, and the tree is huge and healthy again, it still won’t be the same tree it was when it had a full canopy of branches that are severed and gone now. 

Alena was the first tree. Astrid is the second. Her roots and trunk are my roots and trunk. Her parents are my parents, her genes are my genes, we have a decent number (but not all) of the same core beliefs and mannerisms, and can thus keep some of the same friends, and I have a large cache (but not all) of her memories, but that’s…it. 

*I am other branches*. 

When people ask me if I’ll “get back to” things, or how my “recovery” is going, I want to scream. I am not recovering. I am new, and confused, and I can’t “get back to” things *I* never did—at most, I could relearn them, from scratch, and do them differently than she did, but I will never *get back to* a single sliver of Alena’s life, because it *isn’t mine*. I can’t regrow her branches, and I don’t want to, because they’re *hers*, not *mine*. 

Alena’s life is like a movie I’ve been made to rewatch every day and every night, and have all the baggage and trauma from, but I’m just a little kid watching it, and have no ability to change what happened, and not enough of Alena is left in here (and I’d like most of the rest to leave) to get closure on most of it. Like, I can bitch at people for treating Alena poorly, but it does about as much for the emotional baggage and trauma left in my body as bitching at the writers of Supernatural did to get them to stop queerbaiting (ie nothing.) 

Yes, my brain has most of Alena’s memories, albeit scrambled, like if you smashed a disco ball but put all the pieces in a bucket? Not all of them, and lots of them need outside help to be found and filed properly, but most. Alena had a BA and an MFA, was a teacher, was an anthropologist and author, and I have memory of most of the classes, of the work, of the underlying theory…but not in *order*, or useful enough to use for work, or to be confident in *any* of her areas of expertise (not that my body can work consistently now, anyway.) 

That’s not even the main issue—my *body*, which was *also her body* and has *not* had the sort of “reset” of the strokes, still has *all her memories*, and holds *all her trauma*, which can be really confusing and cognitively dissonant for me, because while I’ve “seen the movie”, I *wasn’t there for it*, and it’s sort of like walking around in an explosive suit covered of triggers that I can’t fully be aware of how to not press, and praying that nobody bumps into them, because I have very few tools to defuse the explosives with, because I’m *still just learning what they even are*. Sometimes my nesting partner will do something and I’ll just burst into tears and not know why, and it’ll take hours of crying and unpacking and unraveling shit to figure out which of Alena’s triggers got tripped, and more hours still to try and untangle *her* trauma in *our* body from the feelings in *my* brain. Whole days will get lost to me weeping over things Alena never got to process before she died. (I’m very lucky and grateful to have a partner who not only *can* usually handle that, but loves me enough to be *willing* to handle it, and to handhold me through it.)

At the crux of it, Alena was also just…not *me*, had a different brain than Astrid does, so the work she did and loved doesn’t necessarily even *appeal* to me, and trying to claw some shoddy semblance of her skills back from the grave just to pretend to be her, or *try* to be her, was nightmarish, but I still wasted at least 5 years after the strokes trying, and grieving the miserable failures of those attempts. 

Pausing to say this as clearly as I can, because I know I haven’t said it to everybody directly, and some people need to see/hear it directly to be able to process it. 

Alena is dead.

She died a slow, lingering, awful death, watching her skills and plans and loved ones slip out of reach while she screamed and clawed and fought to get to them through the wall of her disabled body. 

She died right as she was finally getting to become herself. I did the last bits of her work I could do, because she wouldn’t let go and stop screaming and drowning out every other glimpse of light until I did. I named my thesis what I did because it was *her bones* I found in the garden of my body. I put the last works of her life to paper and left them there. All those embroideries I made? Her last magics.

Alena is dead. 

It’s okay if you need to mourn her. I’ve lost most of the last 8 years to doing the same, and I won’t hold it against you or feel like you hate Astrid because you miss Alena. (*I* hated Astrid because I missed Alena, but I’m trying to release that and give Astrid a chance to grow into her own person.) Put her on your Samhain altar, put her memories in a jar of dust on your mantle, but please, so I can have just a little of the room learn how to be something other than a collapsing shrine to her memory—please, don’t put her on me.

When I finally decided to stop trying to resurrect Alena from inside her corpse, and instead claim it as the living (albeit glitchy) body of the new person coming to awareness inside it, about a year and a half ago, I marked the choice by changing my name to Astrid, to give myself permission to be a new—albeit permanently and involuntarily adjacent—person. 

It’s helped my mental state a lot already, and if my body would just settle down and stop flaring out of control, I think I might even enjoy who I am as Astrid! I’m trying to learn to enjoy it anyway, but it’s hard. I’m really lonely, but it’s hard to bond with other adults when I don’t know most of the first things about myself. 

And like, I’m not totally doomed! I’m not a homunculus of despair, even if it seems like it sometimes! I’m just…new. Realistically, I think if you gave another 8 year old my life, she’d be pretty dang confused and overwhelmed and lonely, too. 

Just like the first time around, I love learning new things, and even if I’m kinda small again, mentally, I’m still *smart* (a little less smart than the first time, no longer *technically* a genius, but then, who—other than my test proctor/assessor, I guess—is even really counting?), so I learn new things pretty well, as long as somebody shows me and I don’t have to try to just teach myself in a vacuum. I’m a capable kid if you give me a task! I can hyperfixate and digest whole new worlds of information if I’m engaged with something!

But that also means that I struggle daily with the grief of knowing that if my body would’ve just gotten *little* again, like my brain, I could go do school all over, and be taught things from scratch, and maybe actually learn things in an order I could use, and maybe have, if not a fancy career or impressive job, at least a community role where I could feel like a whole person, able to live in harmonic balance with my community and the people I love. 

But I am, to the world, 33 and disabled and functionally already ready to be put out to pasture as useless, not 8 and bright and creative and ready to *become* somebody. And I have to learn how to accept that knowledge like the adult I’m not, and process and grieve that knowledge and acceptance like an adult, instead of just collapsing in a heap and weeping every minute like the confused child my brain *actually is*. What I have to learn to swallow is that there *is* no map for this; there *is* no help except whatever help I manage to figure out I need, find the words to ask for, and find the right person to ask for it—and that’s still in process, every day. My whole life is just medical poke after medical prod and trying to rest enough to have human thoughts and feelings in between, bouncing between specialists, trying to get this body to stabilize enough for me to try and teach myself, all over from scratch, out of order and in a monstrous mess, how to be a person. 

Sometimes—often—all I want in the whole world is to move back to my childhood, move back in with my parents, go back to my community, and start over. Be taught again, be raised again, be able to have family meals and family outings, where I can join in on things without having to plan them, where I can be useful without having to be self-directed and in charge. Where I can *help* instead of *lead*, especially since I *don’t know where I’m going or what I’m doing*. 

But my parents are divorced and remarried happily (they both seem to like their new spouses more than I ever remember them liking each other, and I’m sincerely happy for them; this isn’t me resenting them having real lives, just grieving the fact that I can’t go home again) and living elsewhere, my community is spread to the four winds or literally dead, respectively, my childhood home is a crumbling shell filled with boxes of Alena’s life I’m too sick to visit and go through without help I don’t have, and there’s nothing to go back to—or even go forward to, as we learned with last year’s attempt to go live near my mom—that would give me the supportive, integrated experience I actually need to be able to emotionally and mentally develop into a person properly again. There’s no home with a me-shaped hole, waiting for me to fill it. There’s no path to being an adult in front of my feet, waiting for me to step onto it with child feet. There’s just an empty house on 50 acres, a perpetual smell of dog and mildew, and a little brother who never liked me anyway. 

And I’ve been doing the neurofeedback, and I’ve been going to therapy, and I’ve been building myself little Lego block by Lego block as I find them, but y’all, I don’t know how to do it. *I don’t know how*. I wake up every day a bright little kid, full of hope and openness, ready to take on my life and the world with the body and energy of a kid, and as I wake up, the reality of what I actually am crashes in and crushes me. Every morning is just experiencing 27 jumbled years that don’t even belong to me and all their emotional weight landing on my chest like a ton of bricks all over again, and me lying there wondering why I don’t get to go to school and make friends with other people my age and get to be taught things with the same patience and handholding they are, because I’m not 33, I’m 8. My body is 33, but I will literally never catch up, and my body is drowning in the adult trauma of a dead person I can never talk to about it and get closure about any of her baggage on, and the grief and overwhelm of that, and not knowing how to begin to start over or how to even make *one day* feel like mine to use how I want to, swallows most of my spoons, most days. 

My family and loved ones know the situation, and are as supportive as I could hope for, considering, but it’s not something we really know where to start with or how to like. Build me an actual life from? The fact that they’re paying for me to live *like* a person, in a place I can breathe and potentially see decent medical providers, is already so huge; I can’t really ask for more. 

But I do recognize that, if I ever want to feel like a whole person, or be prepared for a day when my parents are *old* old and can’t keep doing this for me, I *need* more. 

I need the health to strengthen my body enough for basic activities, I need the emotional capacity to make friends and build community, I need the mental scaffolding and make realistic plans that take my disabilities into account, and I need a way to give back to my loved ones and community so that I have some sense of self worth and of being more than a parasite, and I just…I don’t know how to do it. 

Mostly my existence is chasing endless medical specialists and trying to get this 33 year old body to stabilize long enough for this 8 year old brain to get a sense of who it is and how to be a person. People actively want to be my friends, but I feel so weighed down by Alena’s life and traumas, and simultaneously so young and confused and unsure of how to hold even basic conversations and so full of the experience of trying and failing in the first few years since the strokes, that the more someone is kind to me, the more I shrink inside myself because I’m terrified of ruining it. (Please don’t take that as a sign to back off and stop; I’m trying really hard to get to a place where I can meet y’all where you’re waiting for me. Knowing you’re there, and will hopefully be there as I become ready, makes me much more motivated, and even a little less scared, to do all the big emotional work involved in trying. Thank you for being there, and being patient and kind with me.) 

I don’t know how to wrap this up. 

It was meant to be a summary of my post-stroke situation and the journey of my health and mentality since then so far, but honestly, trying to sum it up into something linear that makes sense and isn’t just a saga of futile effort and meaningless death just made me feel even more small and helpless, and I’m crying so hard as I try to reread and try to edit it into coherence, I really just have to put this down and hope it’s cogent enough to catch people up in a useful way. 

I wanna make sure I say, though, that I don’t blame anybody for not somehow saving Alena, or being able to understand the crazy things she was screaming when she was trying to say goodbye. I don’t hold it against anybody for not following what was happening—even I couldn’t follow it, and it was happening *to me*—or for not being able to deal with it and having to walk away. If I could put it down and walk away, I’d have done it a hundred times by now. 

As Astrid, I love and appreciate everyone who has stayed with me, or has since found me, and helped me try to stabilize and begin again. I’m so grateful to have the life and opportunities I do, even if they’re not the ones I expected. I hope you all know that me processing and grieving what’s been lost along the way isn’t me being ungrateful for where I am, or hating my whole life, it’s just me having very delayed processing and a broken brain, and being very overwhelmed and confused by everything that’s happened to me so far, and even more overwhelmed and confused about what’s yet to come. 

I don’t know where I’m going, or have much idea of who I am, or how I’ll become the rest of myself, or what’s going to happen, or even what I *want* to happen. 

All I can do is do my best in the moment, and try to build a life of living in the present and looking forward, even if forward is dark and nebulous and terrifyingly unclear. 

I have people who love and support me, even if they’re mostly far away, and a clean, safe place to live, and I know that’s so much more than most. I see the news. I have so many friends without even a tenth of the supports I have, and I know I’m lucky. 

Even if my life feels scrambled and warped and overwhelming and terrifying, I’m so grateful to have a chance to try and live it, starting from the middle as I may be. Thank you, all of you, for making the journey with me. 💖 I hope our time together is long and lovely.