It’s worth a moment to take note here of the things I managed to do yesterday amid all the drama that either were self-regulatory in nature or at least helped to cut off prospects of further dysregulation.
Noticed while making breakfast that I was unthinkingly charging around the kitchen, and made myself stop and literally say aloud, “You need to slow down or you will break something, and it might be me.”
Come dinnertime, rather than simply having leftover macaroni-and-cheese from lunch I made myself the meal I’ve been having during the latest bout of food exhaustion: potatoes, chickpeas, spinach, onion, tomato sauce, and Old Bay seasoning.
With the assistance of 50 Foot Wave, somehow managed to do the full version of my evening walk route, of just under a mile and a half, at the unheard of and unrepeatable pace of a 15’47” mile, which frequently felt like barely-controlled falling.
Brought myself to within spitting distance of a working search solution for the blog, something which had escaped me completely since moving to Eleventy earlier this year and which I finished up today.
The long and the short of it: the blog finally has search functionality again, something it lost with the move to Eleventy back in March. This is not something I was sure would ever happen.
I’d avoided the consistently recommended Pagefind because I didn’t like that it used a separate page for search and unrolled the results into the page rather than what I was used to, which was a search form you could place in the sidebar that loaded a search results page.
Turns out that’s just the default Pagefind behavior out of the box. By utilizing its API, you mostly can do whatever you want.
Thanks to Matti for getting this started off something I’d said in the #software channel on the omg.lol Discord, complete with animated gif showing search behaving exactly as described above, which I used as the basis for figuring this out. I started tackling it yesterday in the midst of all the drama and by bedtime all I had left was styling the search box and preventing a quick flash of the blog’s front page whenever you landed on the search results page.
That last was an unfortunate artifact of doing this the way I wanted, where akin to both WordPress and weblog.lol search results appear at something like /?search=terms rather than on a separate page like /search. It’s something of an issuing cousin to the infamous Flash Of Unstyled Content.
In the end, this was solved by a bit on CSS which hides the usual content that appears at my site root of / by default.
#site-content {
display: none;
}
Then a script in <head> unhides that content on any page whose address in the location bar doesn’t contain search=.
This is pretty super-ridiculous, I find, but nonetheless it works and rids me of something that would have driven my OCD pretty solidly batshit every time I needed to search for something.
Unsurprisingly, right when everything was put together exactly as I wanted it, a major problem occurred: Pagefind did not appear to actually be indexing, or perhaps simply finding in the indexed content, everything it should be. I discovered this while running some tests, and found that a search for the word capacity was finding only three posts when in reality there were over a hundred posts using the word.
To make it all the weirder still, if you limited your search to capac, a non-word no one would ever type into the search box, Pagefind found all the relevant posts containing the word capacity. The problem appears to be something in the way Pagefind does what’s apparently called “stemming”—not to be confused with stimming, the self-regulatory behavior in which I had to engage as these weird problems continued to crop up.
It took all day, but eventually I found my way to a post from Bob Monsour—who coincidentally was in my mentions on Mastodon about other Pagefind stuff—and lo and behold, this solves the problem.
As is usual with posts about code requirements in making this blog function the way it’s supposed to: yes, I consulted the occasional LLM. They are copyright and climate monstrosities, but with the blog such an enormous part of my self-regulatory regimen (regime?), it needs to work the way I need it to work. It’s rank hypocrisy to be sure, but I’ll live with it for as long as I need this blog to exist to help keep my nervous system at even just a somewhat evenish keel.
At any rate, the point is that search is back, and functioning the way I want and need it to, and since search links in existing posts already use the /?search= format, I don’t even need to do any clean up. Everything now should just work.
Now that I’ve said multiple times that it’s working, I fully expect now that it’s gone live for something to fail, possibly in some spectacular fashion.
There is a well-worn phrase in disability circles, primarily in political and research contexts: nothing about us without us. In essence, decisions about our lives should not be made in our name, because we are autonomous agents acting in the world on our own behalf and with intrinsic value and worth as human beings.
Robbing me of autonomy is like a batphone straight to my existential despair. That’s at the essence of my having called the prospect of having to move to western Massachusetts to live a life entirely dependent on others to see any part of the world other than the rooms in which I would live one of my worst nightmares.
It’s also at the essence of yet another flailing email clusterfuck with my sole remaining parent, upon whom I am entirely financially dependent, of the kind I’d thought we’d left far behind awhile ago now because they’d agreed to do that.
Presumably in the wake of writing about my pacific circuit and its potential loss, my inbox began filling with multi-paragraph messages in a tiny font that showed little to no recognition of everything I’ve been writing here for years about Social Security, disability, or the question of ME/CFS (which my current primary care physicians dismisses as a lack of strength training)—requiring me to recapitulate it all in some sort of tl;dr fashion that wouldn’t swamp me under a wave of entirely extraneous cognitive demand given that I’ve already written about it all, and my resource management always is balanced on a knife’s edge as it is.
(If there were a fucking search solution for Eleventy that suited what I want for one, you’d be able easily to search for the forty-two posts here that include the term “Social Security”. Well, forty-three now.)
Eventually, it brought us to me being asked about the epic disability narrative I’d written three years ago, because they wanted to share it with a lawyer friend to see what they thought of it. My conditions were plain: I’ll share it but only if they didn’t not strike out on their own as they have done multiple times in the past.
My compromise against being tasked with writing an entire damned update covering the past three years—again, a resource impossibility—I wrote a one-page addendum briefly touching on those years.
Easily the most explosive incident of striking out on their own came seven years ago when they reached out to some self-professed autistic consultant, who proceeded to show up unannounced at my then-nonprofit to badger a volunteer with questions about me and making conservatorship noises at them. It was after this debacle that they more or less agreed they wouldn’t any longer be striking out on their own in my name. Even then, that agreement took some time to seem to fully implement.
Then came today.
You’ll be unsurprised at what happened next, although in the moment and given the above I very much was: after talking with their lawyer friend, they struck out on their own.
(One “good” thing that came from this lawyer friend: confirmation that there is basically no route to SSDI for me. I’ve basically been saying this the entire time, although the point of the disability narrative was an attempt to make a case for SSDI as a “disabled adult child” despite being been informally told by an agent that I’ve too few credits to get it on my own, yet too many to get is as a DAC. At any rate, having outside eyes confirming that SSDI is a non-starter at least underscores what I’ve been saying for awhile now: I’m doomed.)
At which point I returned to a social media thread I’d been posting along the way during the past couple of days and began having something of a nervous breakdown—or textual autistic meltdown—on main.
Look, I get that it sucks to have a middle-aged child who has amounted to nothing and is entirely financially dependent upon you, but I’m still an autonomous agent in the world. If you won’t do it out of empathy and recognition of my humanity, then do it because not doing it self-defeating for whatever you’re trying to do. Nothing triggers pathological demand avoidance like robbing an autistic person of their autonomy.
The entire reason any prospective move to Massachusetts after they die is a nightmare scenario for me should be plain from that earlier post: it represents for me an almost total loss of my autonomy. It’s not something that appears plain to them, however, as in this flurry of emails was a description of how exactly they live in the spaces which would become mine, complete with an assurance that there’s a coffeeshop that’s a mere twenty-minute walk away—as if a twenty-minute walk was something I was capable of doing on a regular basis twice in succession (once there and once back) instead of being the limit of the daily loop I try to do for exercise which puts me at the outer bounds of my capacity for exertion.
It’s clear now that they simply do not have any true understanding of or respect for this notion of autonomy and the degree to which negating it is to me very much akin to dying, else they would not murder my morning by so casually once again striking out on their own.
I’d be remiss if I left this vague.
At issue is that they wanted, as noted above, to share my disability narrative with a lawyer friend. That lawyer then suggested contacting a Portland disability lawyer.
Let me be clear: I’ve done this in the past, more than once, and every time tried in vain to get lawyers to let me initially discuss matters via email rather than a phone call, specifically as a disability accommodation. Partly because phone calls are terrible and difficult, and partly because I knew their customary 15-minute evaluation call was insufficient to describe the late-diagnosis and work history irregularities of my situation. The one and only lawyer who agreed to an email conversation was of the opinion was that it was unlikely any disability lawyer would take my case precisely because I was late-diagnosed and had a work history. That’s not a case that resembles the ones they take and win, and they take the cases they will win because they don’t get paid until and unless you receive benefits.
(Not for nothing, but no one practicing disability law should be refusing a disability accommodation request from a prospective client.)
Anyway, the point is that rather than return to the conversation with me to report what their lawyer friend had said, they struck out on their own and contacted a local disability lawyer in my name without my permission, and returned to the conversation with me only to instruct me to call them because “a phone conversation should not be too taxing”.
Read that one again, please: “a phone conversation should not be too taxing”.
Then go read literally one of the first things I wrote about as I’d begun blogging about my autism diagnosis, in which I explain why phone conversations are so tremendously problematic.
Ironically, this entire past two days of email itself has been nothing but taxing.
Let me, again, be clear: I’m entirely open to having a conversation with a lawyer, but only if I know they’ve taken the time to read my disability narrative in all its 24-page glory. This, too, I view as a disability accommodation. If they can have a 15-minute telephone conversation to evaluate a prospective client, they can read a 24-page document to do so. It required months of difficult, strenuous work, precisely because I knew no phone conversation is going to capture my circumstances, and we all need my circumstances to be judged both for what they are and for what they are not.
Much of the above existed in draft form before I’d even left the apartment for my usual six-block walk to sit for an hour to read over coffee, a self-regulating behavior all the more necessary given that I’d had to literally stop myself in the kitchen while I was trying to put together my breakfast and say to myself, out loud, “I need to move more slowly, or I’m going to break something, and it might be me.”
Then came the email that was waiting for me when I sat down ousted my regular coffeeshop. Then came being unable to focus on the self-regulation of reading. Then came the new thread I inflicting upon my social media followers, which abandoned the euphemistic, distancing pretext of “family member”.
After saying years ago, after the conservatorship debacle, that she’d not strike out on her own again, after doing so today anyway and even asking forgiveness because she knew it was wrong, my mother just threw this at me: “Keep in mind that you never would have be diagnosed if I hadn't interfered.”
When literally all she had to do when she heard back from her lawyer friend with whom I gave her permission to share my disability narrative document was come back to me to discuss what that friend had said, and treat me like an autonomous agent.
I’ve made it clear over and over and over again: pre-diagnosis I spent my life feeling like a failure and fuckup—and knowing this must be what my family thought of me—and every time my mother makes choices for me instead of with me it shows she still thinks this.
This is toxic behavior, but I’m trapped in and with it because I’m completely financially dependent upon her money and can’t cut her off unless I want to hit fast forward into my eventual, inevitable future.
This alone just makes me not want to be here. (Not in an actionable sense, but the feeling is there.)
Nearly half an hour later, I made sure to note that I’d deliberately added that “not in an actionable sense” because the be perfectly honest right now I don’t trust her not to call the Portland Police Bureau to inflict a welfare check upon me. It would, after all, fit right in with the return to denying me my human autonomy.
I’d forgotten until sitting down to try to force some regulation into my nervous system by writing out this post that two years after that self-professed autism consultant made conservatorship noises about me, my mother herself made such noises. It’s important to note what I said at the time.
[I]f there’s one way to turn me into someone experiencing suicidal ideation, it’d probably be to take away what little control and self-determination I have, because at that point I’d no longer see a point. So maybe they should take a moment to walk this one back.
In this latest email insanity, she expressed discomfort with the fact that I compared having to move to Massachusetts into those circumstances as akin to dying. She should feel discomfort, because it discomforts me, too. Drastic loss of autonomy very much does make me question the point of any of this.
Despite me having made that point in this most recent exchange, she reverted to the told ways, struck out on her own, and robbed me of autonomy.
Who does that.
Who the fuck does that.
Why would someone do that to me.
Why should any of this make me want to be here, trying my best to get through from one day to the next even though and despite the fact that absent a fucking lottery win I know that there is no real future for me in the end.
This is all so hard enough.
Who the fuck thinks to make it all this much harder.
Well, I was born in a small town
And I live in a small town
Probably die in a small town
Oh, those small communities
—John Mellencamp
Earlier this year when I moved the blog to Eleventy, I mentioned that in putting together this most recent incarnation of things I’d used a longrunning Tumblr theme called Nyssa as its design base. It’s a theme I’d used more than once when I was using Tumblr for one thing or another, and as they say in real estate it has “good bones”.
At the time, I’d emailed the theme’s author to see about permission rights for such a remix, but then ran into a prior Q&A about that very thing and so just charged ahead and got to work with my modifications for use here.
Anh emailed a reply overnight; as it turns out, I’d used an old address not much in use anymore. No harm no foul, since she reiterated to me the previous permissions given to other people.
The funny thing, though, is that she notes coming across my blogging anniversary post in which among other things I responded to a particular blog challenge that had been making the rounds. Turns out, she’d responded to these, too. As I noted in my reply back, I guess I forget that even in 2025 the blogosphere is still kind of small. Or, perhaps it’d be more accurate to say that it’s small again, now that we’re past the Twitter-era explosion of content marketers who overwhelmed the form and drove so many people away from it.
I’m compelled also to note that her about page is based on the idea of having multiple versions of oneself, something I’ve written about here several times over the years—such as when I’d riffed on Rachel on her name, where you can probably find links to those several other times. I do wonder to what degree personal websites tend toward inevitably reaching certain subjects such as this, persons after all being stories which tell our selves over time.
Last week I read two books about the supply chain: Annalee Newitz’s Automatic Noodle (high-five if you were among the “late-night friends on Mastodon” mentioned in the acknowledgements) and Alexis Madrigal’s The Pacific Circuit. What I want to talk about here, though, is Kurt Vonnegut.
Late in the Madrigal, he mentions a story Vonnegut once told in an interview on PBS—it shows up so much online that it’s been fact-checked. (He mentions it as well in his recent appearance on the Newitz’s podcast with Charlie Jane Anders, Our Opinions Are Correct.) It’s a story, ostensibly, about envelopes.
BRANCACCIO: There’s a little sweet moment, I’ve got to say, in a very intense book — your latest — in which you’re heading out the door and your wife says what are you doing? I think you say — I’m getting — I’m going to buy an envelope.
VONNEGUT: Yeah.
BRANCACCIO: What happens then?
VONNEGUT: Oh, she says well, you’re not a poor man. You know, why don’t you go online and buy a hundred envelopes and put them in the closet? And so I pretend not to hear her. And go out to get an envelope because I’m going to have a hell of a good time in the process of buying one envelope. I meet a lot of people. And, see some great looking babes. And a fire engine goes by. And I give them the thumbs up. And, and ask a woman what kind of dog that is. And, and I don’t know…. And, of course, the computers will do us out of that. And, what the computer people don’t realize, or they don’t care, is we’re dancing animals. You know, we love to move around. And, we’re not supposed to dance at all anymore.
It’s well established here that I am financially dependent upon my mother, my sole remaining parent, who for some time now has lived in her own quarters, so to speak, in the home of my sister, brother-in-law, and nephew back east. Once that support is gone, as it stands now I’ll have less than six months of financial support left until everyone expects me to take her place although that doesn’t actually “solve” anything but the matter of not instead simply ending unhoused somewhere on the streets of Portland. Given the methodical destruction of what little safety net we have in this country anymore, we can’t even expect that I’d anymore even have the food stamps required to actually feed me.
The word “solve” is in quotes there because for me it isn’t any kind of a solution at all, and the reason is somewhere up there inside Vonnegut’s envelope.
If there’s one thing I have despite the financial dependence and the welfare support, as stunted as sometimes it can be what with the autism and the fatigue, it’s independence. I’m temperamentally unsuited to live with other human beings (just ask those I’ve lived with as an adult), and in fact I’m emotionally unsuited to have a social circle of what you’d term friends (versus intermittent acquaintances), but my relative sanity itself does depend upon the fact that I live in a Portland neighborhood that’s somewhat akin to a small town where I easily can walk to coffee, or brunch, or a movie without needing to stroll beyond a six-block radius.
I don’t need close attachments but I do need these loose, sociable if passing and fleeting connections of the kind Vonnegut valorizes as being of such fundamental human importance.
Those quarters foreseen as passing from my mother to me, it’s no exaggeration to say, would be among my worst nightmares, as suddenly I’d be forced to life in very close proximity to others when really I’m only as self-regulated as I am because I don’t have to closely (I’d argue, for me, claustrophobically) navigate a life of other people, and I’d be entirely and completely dependent upon those very people—whose mere presence would be dysregulating for me—to ever see and experience anything at all outside the home.
Those daily, weekly, or monthly routines of coffee, brunch, and movie in effect are my pacific circuit—regular acts of sociality if not direct sociableness that help regulate my nervous system and, for lack of a better term for it, my general levels of peace.
This all is further fed by the fact that recently I was thinking again about how the disability determination consultive evaluation after my post-diagnosis Vocational Rehabilitation job placement showed work was impossible for me yielded a report which instead said that while due to that job experience I had acute adjustment disorder, because I did so well on during two-hour exam clearly I can work just fine, and definitionally screwed me forever. There is no path ahead that results in me obtaining disability benefits, because of this original sin on the part of Disability Determinations Services that now and forever presents an insurmountable hurdle.
Complicating the idea of my pacific circuit is that through either resilience or resignation, as my world shrinks due to the still-undiagnosed fatigue, I keep marking most days as having been “neutral” (my general target for overall state of mind) despite, for example, not having been to the zoo—a once weekly, then monthly, activity—since May and not having blogged—until right now—for two months, when those things were of a self-regulatory nature. It’s entirely possible that through such resilience or resignation I’d continue grading on this kind of curve when imprisoned in that room somewhere in New England, but as much as this dynamic makes me sad now it would only make me all that much sadder then.
The other day I received the news that The Belmont Goats had lost another member of the herd, bringing it down from its high of fourteen to just nine. Bambi, a Nigerian dwarf goat and the first (along withher brother, Cooper) who joined the herd as a kid and bottle baby (which made them the go-to goats for taking to events), turned twelve in April. She could ask for attention like a cat, and insisted on being a lap goat for as long as she could, until she had to be content with just sitting in chairs by herself. Bambi’s passing comes in the days and weeks before the project moves into my neighborhood after seven years just across the railroad cut, to a space intended to be where that nine will live out the rest of their lives. That project itself for several years was a not insubstantial part of my pacific circuit.
By the recent, long-awaited return of the phenomenal podcast NeuroDiving to discuss empathy I was reminded of how to a significant degree I live my social life through a sort of process of “out of sight, out of mind”. For reasons, I think, of self-regulation even if entirely unconscious, whenever I need to make a break from something—family because I moved west, fandom because it just sort of wound down, from the goats because of an ethical dispute—I make sharp breaks because I’ve never had the mental temperament or dexterity to mix and match or compartmentalize. In the never-ending battle of resources versus demands, what’s in sight is about all the demand I can manage.
(The autistic person with whom NeuroDiving discusses empathy at one point says—although I’m not really convinced this has anything to do with empathy, per se—that when they move away from somewhere, they don’t miss anyone. This is significantly the case for me, although it can be somewhat moderated by time and distance. To wit: I don’t spend my days missing my family back east, but I might sometimes miss the old Comic-Con crew—the difference and distinction being that I was attending Comic-Con ever year for some time but once I’d moved west I basically only went back for my father’s death.)
This was on display when I was texted about this most recent death in the herd, because I generally don’t really have the bandwidth capacity to maintain acquaintances beyond the lifetime of the circumstances in which they were formed—or, at least, especially when the nature of the break with those circumstances were negative, even if not all acquaintances were directly implicated in that negativity.
(Contrarily, this also is why whenever I was broken up with I had an aggravatingly difficult time letting go: they weren’t “out of sight’ so I couldn’t put that no longer valid version of them “out of mind”. This is all pre-diagnosis, so I had no concept of autism’s monotropic tendency and the challenges of getting one’s mental and emotional processes off one track and onto another.)
How does all of this square with my views on kindness, though? Late in Sue Burke’s Usurpation (the best in her Semiosis series), a character makes an observation that stopped me in my tracks. “You were kind to me,” they say. “That’s how I knew you were real.”
It’s true that I’ve two favorite literary quotes: one of which is about the need to be kind, especially given the other which is about being dropped down halfway. It’s true, too, that I believe everyday courtesiesmean something, given living in a universe in which nothing we do matters and so the only thing that matters is what we do. Which, however, is less kind: to cut people off because you know you can’t manage the reciprocal demands, or to try to fake it so they don’t feel cut off?
To what degree is that incapacity a result of knowing that I’ve a tendency to become too overwhelmed by the states of others to be able to navigate either their state or my own? I’ve got to take care of me, else there’s nothing to go around. My own particular variety of autistic empathy perhaps necessarily is one that only can operate at arm’s length.
Even absent specific, circumstantial breaks, my acquaintances tend to become intermittent appearances over time, and there are parts of my pacific circuit which I’ve come to travel on longer timeframes than the daily, weekly, or monthly.
Just last week I thought to put this year’s Portland Polish Festival into my calendar well in advance so I would not somehow forget. For more than a decade, there’s been a fair to middling chance that I’d run into a longstanding if increasingly intermittent acquaintance who stretches back to my MindVox days more than two decades ago. In the past, there were at times several, different such yearly touch points: the Adult Soapbox Derby, National Pie Day, the Polish Festival, and the occasional birthday.
Imagine the dislocating disorientation, then, when on Tuesday evening I logged into Instagram to see said Ryan Lloyd in the list of recommended accounts (I only use the site for knowing what my local, neighborhood businesses are up to, since they constitute almost the entirely of my world), and upon clicking through finding what at first appeared to me to be a flyer to a birthday celebration but turned out instead to be the notice of a memorial gathering. Anything I did over the next hour found itself interrupted by the sound of my own voice exclaiming, “What the fuck?!”
Quite the opposite, then, of a birthday.
Following the death of David Lynch, I took a walk in the woods. Next month, at the Polish Festival, I suppose I’ll have to grab a placki.
(Incidentally, he also once saved me from an unfortunate confrontation with a corporate landlord by repairing the hole in the drywall of an apartment I made when I threw a shoe at the wall because my neighbor for the umpteenth time was playing his keyboard at one o’clock in the morning. While I say this is incidental, if you follow the chain of links on Instagram you find that seeminglyhalfthebars (and a piercing shop) in Portland are waxing nostalgic about the fact that Ryan could, and did, build or fix just about anything.)
I’ve talked here before about my occasional bouts of death anxiety and existentialangst. Late last month I’d somehow managed to follow up a podcast episode about the philosophy of weirdness with one about why the universe began, the former of which essentially concludes that whatever underlying physics or metaphysics you choose to ascribe to existence cannot help but be in some profound and underlying sense deeply weird and beggaring of belief. It’s the nature of what happens when you try to eff the ineffable.
Two deaths of different valences in a matter of days, then, each substantial in its own way, is nothing if not a thanatophobic gut punch. Ryan’s death necessarily implicates all my own thoughts about mortality and meaning, and has somewhat colored, complicated, and confused how this post about my pacific circuit (notes for which actually go back almost a week) eventually came together, or in some ways did not. It doesn’t, for instance, actually have much of an ending.
