medical

The Story So Far

~ Shimmerlacrum ~ Leave a comment

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 blasĂ© 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.

I keep crying when I try to caption this. Um.
This is one of the last photos taken of Alena before the strokes took her. October, 2017, I think.
On top of a stone monument in a park in Gainesville, Georgia, that she definitely wasn’t supposed to have climbed, in the middle of a PokĂ©mon-hunting date with the love of her life, Bruce.

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. 

When I went back to Starbridge for my grandmother’s memorial a couple years ago, I went up to the standing stone circle and hugged each of the stones and thanked them for holding the memories of the life I lived as Alena. I said goodbye to her aloud for the first time; admitted she was dead and had to be released to go into the West. This is the first picture I took after, still in the circle, still hugging the stones, and looking, for the first time, towards a totally uncharted future.

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. 

Alena the adult is gone, but this little girl? She’s still here. She’s the trunk of the tree that the branches snapped off. She is alive and full of wonder. She is a FERAL GLITTER GREMLIN and ho probably shouldn’t have the reins to a 33 year old body, but she does, and she’s gonna make the best of it.

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. 

I don’t know where I’m going in my life as Astrid, but I know that, for the moment, there’s sunlight on my face, wind in my hair, and a beautiful world all around me, where thousands of things remind me that everything grows and rests and renews itself at different rates, in different ways, in nature every day. Like everything, I *do* have a place I belong here, even if I don’t know the how or the way yet.

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.

(CW: medical mentions of menstruation, blood, and bodily fluids, PTSD, panic issues)

~ Shimmerlacrum ~ Leave a comment

Dear medical providers and administrators, from a disabled person with severe medical and personal trauma—

If you know in advance that your initial appointment with a new patient will require them to be
-nude,
-touched in intimate areas, or
-stuck in an enclosed space,
you ABSOLUTELY need to give them written warning WELL before the appointment.
Ideally when they are making the appointment, but if not, as soon as you know it will be required.

If you as the medical provider don’t know in advance, and the need only becomes evident during the appointment, you NEED to give patients the options to:
-go “freshen up” and give them the supplies to do so (only works if they’re able-bodied enough to use the facilities to hand and not allergic to the supplies, the latter of which I ALWAYS AM,)
-ask for an additional staff member (of their requested gender) to be present as a witness during that part of the exam, or
-reschedule that part of the exam for when they have had time to physically prep/bring a support person/talk it through with their therapist/take anxiety meds in advance (but it has to be relatively soon, or it WILL come off like their inability/unwillingness to unexpectedly undergo something that feels violating to them is being punished by care being withheld.)

If you’re a doctor or other actual medical care provider, you should be aware that disabled, traumatized, and busy people exist, and you should care about the humanity of your patients enough to allow them the basic dignity of being able to prepare appropriately for appointments.

If you DON’T do those things, frankly, you are a jerk who shouldn’t be entrusted with caring for people’s wellbeing in any way, and you ABSOLUTELY DESERVE having to deal with all of the explosions of vomit, volcanoes of blood, hurricanes of weeping, torrents of snot, fetid swamps of unwashed genitals with sweat-matted bush, storms of scary PTSD episodes, floods of leavings from yesterday’s sexcapades, foul winds of post-gym or -physical therapy sweat, and whatever else you get. đŸ˜€đŸ–•đŸ»âœš People have DISABILITIES, TRAUMA, OTHER ACTIVITIES IN THEIR LIVES, and BOUNDARIES. If YOU get to know in advance, your PATIENTS SHOULD, TOO.

[This message is brought to you by the fact that I woke up today feeling utterly, immobilizingly awful due to my extremely heavy period (made worse by it being late as well as me being on blood thinners), so I called to reschedule my urogynecologist appointment for this afternoon—and thank Godzilla I did, as APPARENTLY the very first “consult visit” includes a “very thorough pelvic exam” despite them in NO WAY warning me of this in advance or even asking what I was coming in for. 😑 Thoughtless, callous jerks would’ve COMPLETELY deserved the cartoonish, Pompeiian blood volcano to the face and subsequent blood lake of an exam room floor they’d have gotten if I’d gone in today. đŸ’€đŸ©žđŸŒ‹]

pic of the Sausagecat looking as annoyed as I feel

Updates from 2024 as we prepare to enter the new year, in case you’ve struggled to keep up (understandable, because this year has been an insane monstrosity):

~ Shimmerlacrum ~ Leave a comment

  • I go by Astrid now. On purpose! Please don’t call me Alena. Alena was pre-strokes; Astrid is post-strokes. Astrid has access to most of Alena’s memories, including skill and feeling memories, but doesn’t practically have those skills and feelings, is not [even able to be] that person. I won’t be mad at you if you slip, but hearing it is painful and something I want to move on from, so if you care for me, and my comfort and identity matters to you, please work to shift to calling me Astrid. 💖 (Yes, all my publications and my website are still under the Alena name and will have to stay that way for the foreseeable future for practical purposes.)
  • I live in Bangor, Maine for the time being, with my partners, Bruce and Joe. (Bruce is my husband of 5 years, some version of whom most of you probably know by now; Joe is my boyfriend of a year and a half, who joined the household and moved in last year.) We moved there to be close to my medically-adept mom out of necessity due to my health.
  • For whatever reason, my body and brain don’t seem to work very well back on the East Coast, especially my lungs and connective tissue, and it’s like having a dog on my chest and being crushed in a laundry mangle all the time, and so far, the only relief has been coming back to Colorado temporarily. Since I have no income and am too disabled to work (even creatively/part time) reliably, trying to figure out my life and how to live somewhere that doesn’t feel like it’s unaliving me the whole time I’m there is overwhelming and scary, and pretty much everything depends almost solely on the kindness and support of others right now, especially my family. It makes me feel really burdensome and beholden to need help with basically everything and have so little hope of being able to take back over doing these things myself, and it’s hard not to just be fraught and frazzled all the time.
  • Medical care in Maine has been impossibly terrible, and I haven’t been able to get the psych meds I was finally stable on after 15 years of trial and error (that irreparably damaged my personal life and my body) because the doctors here refuse to accept the word of my CO and GA doctors and want me to start from the very beginning of that nightmare all over again. It’s really disheartening, and if I weren’t on an escape in CO right now, I honestly don’t know what hope I would have, because going through that medication gamut almost unalived me multiple times the first runthrough, and that was back when I was healthier and more stable; after a fortune in finance and suffering and time spent and friendships lost and relationships damaged to find the med balance that let me live SOMEWHAT LIKE A PERSON, I’m utterly unwilling to start that process over because the Maine healthcare system doesn’t think the word of multiple past doctors and therapists is good enough. I’m tired. I don’t want to keep pushing this same Sisyphean boulder up the hill.
  • Since escaping to CO this last week, my body is almost back to the health it was at before we moved away, like magic! While it fills me with joy and gratitude and hope, the idea of voluntarily going back to where I can’t breathe or move or think or do anything except rot and cry just fills me with deep terror, so please stop messaging me to ask and comfort me about it. đŸ˜…đŸ–€
  • I still really struggle to read these days. While I love words, and appreciate all the intention behind helpful messages, especially around my health and healthcare options, I usually can’t even read them, let alone respond to them. The best way to get me that info is to send it to my mom or Joe, who help me read and understand stuff. Please don’t send me things (other than memes or short poetry) to read for fun, no matter how much you think I’ll love them; reading hurts now and I can’t remember the content of sentences when I’m halfway through them and even trying to read my favorite books just makes me cry now because they’ll turn to gibberish as I’m reading for no apparent reason. Having to explain it every time is always a downer and ruins the party, but like. I’m a writer with brain damage who can’t read properly anymore and it sucks. đŸ€·đŸ»â€â™€ïž
  • My favorite things right now are hobbit hiking in the mountains when my body will allow, playing Stardew Valley, watching TV shows I’ve already seen several times, looking at/talking about art, leftism, and occasionally seeing friends (when my health allows.) Keeping up relationships is really hard for me right now, as I struggle to hold conversations, do video chats, or leave my apartment much at all these days, and mostly what I have to talk about (outside of this month-long break in CO, which I am so grateful for) is mostly just miserable, because where I’ve been living has been crushing out even my basic functionality to the point that all I do is sit home and sleep and cry and go to the doctor and cry more. I still really want and need human closeness and community, though, and am lonely a lot of the time. (My best way of communicating rn is honestly just sending pictures of our lives with short captions and relevant memes back and forth unprompted.) I am so, SO grateful to those of you who send me loving pebbles anyways—cards, gifts, messages of support with no pressure to reply. đŸ„° Y’all make me feel like it’s worth it to keep rolling the boulder of myself up the hill, even if I’m exhausted. Thank you. 💖

(Photo is just one I took of the road at sunset on solstice up near Berthoud Pass)

Becoming, or the last seven years as an extended video game analogy

~ Shimmerlacrum ~ Leave a comment

I named my MFA creative thesis “Bones I Found in the Garden,” because when I came through my strokes, I had all these pieces of essays and stories and poetry left from the person I was before them.

I don’t actually know who I am now. The best way I can explain it is this.

You’re playing a video game. It’s your first playthrough, Save File Number One, so it’s kind of halting and messy and imperfect. But you’re *really* attached to it. You’re so invested in this game. You’ve played hundreds of hours, exploring the map, learning the controls, learning how to respond to the environment as this character while *using* those controls. You’ve *finally* gotten past the basic character establishing arcs and are getting into the meat of the story, establishing your home base and making it suit you, assembling a team to play co-op with, finally deciding what aspect of gameplay you enjoy most after *years* of gameplay and maxing out your skill tree in that area. You’ve wooed your romanceable NPCs and they’re super into you and you’re probably gonna get married to at least one if gameplay allows it. You’ve spent so long practicing life as this character, can practically do the sequence for your special attack combo move in your sleep. You’re a few XP away from leveling up and getting to multiclass for the first time. You’re not necessarily a competitive player on a professional level or anything, but you’re doing really well by your personal standards and you’re really focused on your game progression.

And then you wake up to a dead screen. The game crashes. Total fatal error.

You message the developers and they say they are on top of it! They announce that it’s not just you, there’s been a major crash across the whole game, for everybody! They’re doing everything they can! Coding patches as fast as they can and trying to salvage everybody’s save files, but they’re only human, and they have lives outside of work. Children to feed, spouses and friends to attend to. Their lives can’t be all about fixing your gameplay experience.

The first big patch is released, and you log back into the game only to find that your beloved Save File Number One is corrupted. There’s an archived version of it that you can view but not play, but the archived images are degraded to blocky pixels in places, completely warped in others. Some images are flipped, mirrorlike. It’s a viewable story, albeit somewhat scrambled, of the hundreds of hours you’ve put into learning this game, but it’s not *accessible*. You can’t add to it or repair it or fix it, it’s just an image of what you accomplished before. There’s no continuing your beloved Save File Number One.

So, after a period of mourning and avoiding gaming entirely, you take the plunge and make Save File Number Two. You do your best to recreate your first attempt, to build your gameplay back up to the same point it was before so you can *get back to the actual meat of the game*, but since the patch, the controls are slightly different. The developers insist it’s normal small redesigns over time, but everything feels just a little bit *wrong*. The character moves at a different, choppier pace, and the control haptics vibrate harder in your hands now. Your special attack combo move sequence has changed, and you can’t seem to memorize the new one, and every time you go to do it, it kinda hurts your hands because the button layout is much less intuitive since the update. The NPCs all have different dialogue, and it plays at either twice the volume and twice the speed it did before, or *half* the volume and speed, but either way, most interactions feel like riddles instead of exchanges, and you can’t shake the feeling that this was translated from some other language by an AI translation service but not checked by a human. You keep sending error reports and messaging the developers, but they don’t seem especially concerned as long as you still have some access to the game and are paying your subscription fees to play. The subscription fees don’t seem worth it, but what are you going to do? Not play? You’ve put your whole life into this. You’re desperate to just get back to moving forward in the game’s story, finding out how it progresses, but you’re struggling just to get through the same in-game achievements that felt, while challenging, *enjoyable* and *fulfilling* the first time. Now they feel hollow—you’re not enjoying the gameplay, and you’re saving every 3 seconds but pretty sure it doesn’t matter because it can all just disappear in an instant the next time there’s another crash, and since the crash was code-based and had *nothing to do with you*, there’s no avoiding it. You try really hard to attach to the game, to Save File Number Two, but it’s hard to enjoy a game you know is likely going to crash again and get even less developer support than it had when it was a better, more popular, more playable game. They’re not going to waste resources on a game that’s already crashed once and isn’t ever going to get its big following back and make them the money they want. It’s not a good investment.

You barely log in anymore; you let your subscription fees lapse. Save File Number Two is nothing but a pale echo of the game you loved, and playing it mostly makes you sad (and a little bit angry at the developers for not providing better support.) You spend your time offline, logged out entirely. You’re not really sure for how long. Sometimes, a friend will nudge you to hop on and play a bit, and you’ll drag yourself up to make the effort for them, but it’s not doing anything for you. It’s mostly just making you sadder and angrier and trapped by either incompetent programmers or ones just not being paid enough to care that your whole way of connecting to people and relating to the world around you is basically reduced to an awful-to-play trashfire parody of itself. You write angrier emails to the developers. They insist that new players and most old guard players like you seem ~fine~ with the controls, aren’t struggling like you are with them; maybe the problem is that you’re depressed or have grown bored with the game, or are too lazy to learn the new interface?

Galled by the accusations of laziness and incompetence, you double down on Save File Number Two. You try your absolute damndest to memorize the new special attack combo move sequence. You befriend and romance the NPCs by blindly gifting them all your resources even though they speak basically gibberish; eventually you give them the right things to make them like you better, and you arduously complete the same friendship achievements that the first time felt like an adventure. You don’t actually feel attached to the NPCs, though, because you’re not sure what you did right or wrong, and your efforts don’t seem to directly correlate to how much they appreciate them, it’s just random whether or not you stumble into the right dialogue and gift selections. It feels mostly like playing BINGO with people. The engaging, multifaceted characters of before are just memories you mentally overlay over the character portraits so you can try to pretend you still have that connection to them. There are other players online, too, but the in game live communication system has been too buggy to use since the update, so the whole experience feels terribly lonely now.

Still, you’re not an incompetent idiot. Other people are enjoying this game. Other people are finding ways to make it playable for themselves. Surely, you can grind through this tedious morass and get back to where you were in Save File Number One and finally, *finally* progress further in the game. Your friends that play have caught back up; you’re not sure why you can’t seem to make the new controls work for you, why your character moves so jerkily, why the screen keeps randomly flashing all the text into alien letters and then back again. They say they aren’t having those issues, just the normal ones that went with the systemwide crash for everybody.

For the first time, you start asking everybody what the crash was for them, and what the update fixed. You find out that the crash was just people not being able to connect to the game, not anything that should’ve made things so unplayable for you. Nobody’s special attack move combo sequence was changed. Most people’s saved files were still playable. The NPC dialogue issue and translation issues seem to be something wrong with your machine, not something wrong with the game. No wonder the developers were so dismissive; they were *sure* they’d fixed *those* problems. And they were right! You just seem to have another problem, too. But they’re not responsible for problems with the console, just the game, and trying to get support from the *console* production company proves even more futile than trying to get it from the game developers. At least you’re not barking up the wrong tree anymore, though, right?

You can’t get a refund or a replacement, your warrantee is years out of date. They don’t sell new ones of this version of the console; you’d have to chuck the whole thing out and start over with a model several generations newer, and you can neither afford that nor want to go that far.

So you start taking apart your console. You’re not great with technology and it doesn’t make a lot of sense to you, but you ask your friends who have more experience. Eventually, you find a bunch of messed up wiring and a wad of what looks like lint and battery acid wedged up under the buttons. Your special attack move didn’t change, one of the buttons for it was just misfiring when you hit it, signaling twice or not at all, ruining the sequence. Digging a little further gets you more answers: tiny wires connected to the wrong things, or just straight up corroded away. You message the game developers asking what to do—should you try and cobble together repairs to this console or just give up and start over from scratch with a new one from the new generation? You just want to be able to play and basically enjoy the game you used to love.

Somebody at the game company actually sees your message and bothers to reply. It takes you a while to get your console to let you even read their message; it keeps flashing the letters into alien characters randomly. Eventually, you find out that they’d had a friend with a similar issue, and they’d tried a different solution: they’d gotten their old console professionally refurbished. It took finding a very particular specialist with a very specific skill set and a very long and expensive waitlist, but that if you’re attached to playing the game with this interface, it’s probably your best bet. You’ll have to pack up your broken console and send it off for an indefinite amount of time to be fixed, and you don’t know what it’ll cost you, but it’s literally the only option if you don’t want to just throw the whole experience in the trash and start over from scratch and hope you get a better console next time.

So you pack up the console. Lovingly, but exhaustedly, and with so much anxiety that you’ll never see it again. This is your whole life. Your only chance to get back to the story you’re so invested in and finish its arc and see what you can do with it. You pack it up, and you send it off, and you wait.

And you wait.

You message the restoration specialist, but they’re very busy and they haven’t gotten to you yet.

So you wait.

You can’t play the game without a console, so the most you can do is hover on message boards and FB groups about it, reading about each new update and unlocked achievement and even complaint with fierce jealousy and impatience. You just want to get back to the game. You just want to see how you’d be doing if you’d had a machine that worked, or even one you’d known was broken. You just want to be experiencing the game, part of the story, connected to the world.

You obsess, because there’s nothing else to focus on while you wait for the console to be repaired; you can really only be trying to prepare yourself to play the game better when the console comes back.

You start reading the game wiki and trying to understand how the game *works*. You go down rabbit holes about programming and game development and you end up knowing the game world better than you ever thought you could. You still can’t *access* it, but you know you’d be better at it than you were the first time. You could probably speedrun some of that shit.

Finally, the console comes back. It’s been *years* since you’ve seen it, handled it. You’ve been wrapped up in a net of its specs and in game trivia, but the actual object feels almost foreign in your hands. The restoration specialists have left a note: it’s refurbished and restored, but it’s a finicky machine now. It’s old, and fragile, and while it’s optimized to the best of what it can do, you shouldn’t expect it to behave like a brand new machine.

Fine, then. You can’t speedrun anything, but you can still at least play it better than before, right?

You load up the game. You log in. You play around a bit on Save File Number Two. And it *is* easier, it *is* better, than when you had the broken console. But it’s also not Save File Number One. You’ve got max hearts with a bunch of NPCs, but they’re not your actual favorites, they’re just the ones you lucked into the right dialogue+gift combo with when you couldn’t actually understand them. Now that you *can* understand them, it feels
wrong. Uncomfortable. The home base you’ve got, you built with whatever resources you had left over after trying desperately to win over the NPCs and it’s honestly a shambles. Your skill tree makes absolutely no sense and is way more stunted than all your friends’ because you couldn’t even operate your special attack combo move for so long. Not only is this not anything like Save File Number One, it also just
sucks.

You have a choice here. You can

a) say “screw it” and yeet the whole thing into the sun and hope the next game you play comes on a better console and has better developer support and a bunch of other factors you have zero control over;

b) double down on Save File Number Two again because you’ve already given it hundreds of hours, you’re *committed*
while comparing it endlessly to the memory of Save File Number One because it’s nothing but an attempted mirror of that file, feeding how many hundreds more hours of grinding into a game you are not enjoying for a save file you are not proud of or happy with or even especially attached to, since you’re considering throwing the whole thing out at all; or

c) make a new save file. Make one that isn’t trying to be Save File Number One. Make one where you play through from scratch with this refurbished console, learning its quirks as you go, as messily and organically as you did the first time, but not trying to mimic it. Trying to pick a new skill tree this time, one that works better with a controller that feels kind of laggy when you try old expert moves but just feels normal levels of unfamiliar that come with trying a new skill in a new game with new controls. It won’t be the perfect speedrun you dreamed of while the console was being refurbished, but you’ll actually be *playing the game* again, actually engaged with it in an organic way with *some* potential to enjoy the process.

You still miss Save File Number One. You’re still insanely proud of it, and how well you fumbled your way through the game that first time. You’re not really proud of Save File Number Two, but you suppose you should just be grateful you kept playing the game and didn’t give up entirely. Yeah, if you start a new one, the game could crash again, or your console could fail on you again, and you might lose everything all over. But surely it’s worth starting something potentially risky if it’s your only chance at actually enjoying your experience?

So you take a deep breath and you try not to think about it too hard and get bogged down in perfectionism before you start and you load up the game. This time, when the intro screen pops up, instead of “LOAD”, you pick “NEW.”

With Save File Number Three, you definitely do still befriend and romance some of the same NPCs as the first time around, because you’re just drawn to them, and you even enjoy some of the same aspects of gameplay. But you don’t worry about trying to get your skill tree to look like the one in Save File Number One. You don’t actually like the way these controls handle the finer aspects of that branch of the skill tree, so you try out others. It’s a broader tree, less tall, and you’re way behind on achievements as compared to your friends, but you’re actually enjoying the game now. You’re enjoying seeing the updates the developers have made, the way this console differs from the first time around, rather than feeling trapped by them. You’re not *really* behind anything; new players are joining every day. You make friends with some of them, too, and other players with refurbished controllers, because even if they’ve played hundreds of hours fewer than you have, or are way less far in the game than you’d gotten last time, they’ve got new tips and tricks that didn’t even exist when you played the first time. Your old friends give you some gentle shit about having n00b friends and getting game advice from memes, but their original consoles still work, and they don’t really get what it’s like to have to engage with gameplay piecemeal. You don’t mind; they love you, and they game with you, and if you don’t spend as much time directly with them as you used to, it’s just because you want them to see you as this Save File Number Three instead of comparing you to their memory of Save File Number One, like you had for so long. You don’t grudge them their love of the memory, but if you keep comparing yourself to it, you’re not going to be able to enjoy the game. You need to properly invest in Save File Number Three if you want to explore the story before your console gives out more permanently and you can’t afford whatever fancy repair is required.

And you do. Want to explore the story. You never *wanted* to throw out the game or your console, you just wanted to be able to *play the fucking game with a working console*. And it might be a slightly different game and a slightly different console than when you started last time, but you can either focus on that and waste what hours you have left on trying to recreate a memory that can never be recreated, or you can focus on relearning the game and enjoying the process.

So that’s what happened, and I’m doing the latter. Because if I don’t find a way to enjoy the game again, I’m going to throw my console into the sun. And I want to play through the whole damn game. I want to see my character go from the fumbling child she is now to a greying elder, surrounded by loving community. It won’t be the child I was once or the elder I might once have been or the community I’d planned, and I might not make it all the way to the greying end like I hope, but I will be playing the game and learning the controls like it’s new, and doing my best to feel joy in the journey of it.

I don’t feel like Alena. I don’t know what Save File Number Three’s name is, but trying to be Alena after my strokes hasn’t worked, and I’m tired of wasting everybody’s time, especially my own, pushing that rock uphill when I don’t even want to.

I don’t know what rock I’m pushing next. I don’t know. I don’t know my own name; none of them ring like a bell in my chest. I don’t know, and I love that you care, all of you, but I’m not her, and I don’t know who I’m becoming yet. I don’t know. Don’t ask me, and please, don’t try and tell me. I don’t want to just waste who I’m becoming by remembering me as I was and missing her. I want to be something new. I *have* to be somebody new. And I’ll keep what works, but I can’t carry the rest. I never should have tried, really, but I did the best I could with what I knew at the time. Now that I know better, I have to try and do better, even if it means starting mostly over. Otherwise I’m never going to get to play at life again at all. And I truly, deeply want to. 💖

So yeah. Stay tuned to see what I become, I guess?

General Update: bad brain week

~ Shimmerlacrum ~ Leave a comment

Long post ahead! CW: health/medical, disability.

Not having a great brain week. Was on an upswing of functionality, but then the CNA who was supposed to come help us out ended up being a nightmare person and doing more harm than good, and just keeping her in check for the week and a half we had her burnt out my small pile of reserve spoons. I am spoonless once more
and now they can’t find us a replacement for her. I haven’t even had the energy to open my birthday cards/presents yet.

Highlights from the terrible CNA include:
-her telling us that she literally believes that “test tube babies” and babies born through IVF and surrogacy “don’t have souls, for real. They’re just like robotic cutouts; God wasn’t there when they were conceived, so they didn’t ever get souls.”
-her telling me that I should just pay someone else to do my taxes while I was struggling to process instructions from and assemble paperwork for the person we pay to do our taxes. She was supposed to be helping me understand the paperwork; we had already discussed that it was for the tax accountant at least seven or eight times.
-“Oh, but you’re so young, and you look great! You’re not so sick, you probably don’t really need my help with [insert basic CNA purpose task that I absolutely cannot manage for myself], it’s so easy,” over and over and over and over and


Also, really sick of having to explain to people that, just because my body is doing well or appearing to “get better,” it doesn’t mean my brain is in gear to match. Me successfully managing to go out—while other people guide me, transport me, protect me from overwhelming stimuli and from having to do the meltdown-triggering stuff, ie a lot of work from my support system that you don’t really see unless you’re out with us, watching the way Bruce subtly guides me through a crowd or the way Zach helps me go through the menu—does not mean I am somehow in possession of a working brain. I’m usually not, and often doing the physical stuff robs me of the ability to do the mental stuff—I confirmed this the hard way, when I got lost in (the extremely small city of) Newcastle despite being in the same identical spot and doing the same identical process that Ally and I had done three times already earlier that week. Except, when we’d done it before, she’d been there to read all the little map things and directional/store signs (I can’t read maps or pictographs now, and written signs warp strangely, moreso when I’m stressed,) and check the streets as we crossed them (I have this thing now where objects moving quickly towards me strobe and turn invisible and I freeze like a deer and this is also a major part of why I can’t drive anymore,) and navigate around knots of pedestrians (I now have the spatial awareness of a toddler and also fits of vertigo, so I crash into people a LOT when I don’t have someone else’s body to follow,) and remember the name of where we were going (I can’t easily hold things in my head while moving physically anymore; the concentration that movement and balance take mean that I rarely have any processing power left over for thoughts/memory—I can hold a light conversation while walking, but that’s on a good day,) and process the visuals of more than a 3’ radius around our bodies (I can no longer do this while my body is in motion without walking into/off of things, which is another reason I am unable to drive now,) and so I ended up getting overstimulated AF and just sitting on the back edge of a bookstore display and quietly weeping for twenty minutes before pulling myself together and trying to ask people for directions
which went really badly, because I can no longer easily process, follow, or remember directions correctly, and I ended up twice as lost and in the wrong transit station. I only got back without having to call an Uber (terribly expensive and very slow, and it was hot as hell out,) because I finally found a girl in a wheelchair and her companion busking, and I offered them £10 if they’d lead my brain damaged ass the (very short, maybe four blocks) entire distance to the correct bus station when they finished their set. When I got there, I still had to have Ally step out of work (a bake shop attached to the bus station) for a moment to help me figure out the bus timetable and where to wait for it. It was a miserable day, and I was basically useless for the next two after it.

So yeah, I spent most of the last three years not doing anything small and joy-bringing I wanted (needed) to, largely in part because it made people not believe me when I told them my brain didn’t work—“well, it seems like you’re well enough to do what YOU want to do,” whenever I managed something joy-bringing is a thing that cut me deep. No, I have a support system of people willing and sometimes able to make some of the things I want to do feel in reach for me again. I cannot magically translate Zach reading the menu or Bruce navigating the crowd or me actually managing to put on makeup despite the hand tremors into me or those other people being able to do larger scale practical things like finding me new medical help, doing my paperwork/taxes, cleaning the apartment, managing organizational tasks, etc. That’s not a thing and even if it were, it wouldn’t be reliable or sustainable or even really okay.
So I spent a lot of time as a dour hermit out of guilt at the idea of being happy while there were things that needed to be done. I needed to spend my energy on HEALING and RECOVERING until I was well enough to get the important stuff done. I needed to focus on that and only that, so I could resume my place as a functional member of society.

Yeah, turns out that’s probably not happening, in terms of my likely health and disability outlook. This is not a thing I will recuperate from so much as need to learn to manage and live with. It’s also DEFINITELY not happening if I’m so depressed and isolated that I give up and unalive myself, which has been an intermittently hovering intrusive impulse since I was a kid. It remains even when I’m happy, but looms huge when I’m depressed. Not pursuing the things that bring me joy and fill me up because I couldn’t do the things that are now hard or impossible and thought there was some correlation between those abilities? Has destroyed some of the relationships I cared most about, kept me creatively stagnant, and made me so depressed that I’m arguably less functional than I was even right after my strokes. Certainly less able to plan and organize and process information.

If you need me this week, you better be prepared to badger the hell out of me, because I am straight up muddling through thick fog—but please do it gently, as I’m so overwhelmed that I keep just dissolving into tears. My brain terrarium is all storms right now. đŸ§ â›ˆđŸ« 

Unrelated, I took this pic of a glorious double rainbow off my balcony this week. Denver largely feels like living on terraformed Mars to me, but it has such gorgeous storms.