Today’s Considerable Portion

October 25, 2024

Daily we die; the passage of any hour you choose subtracts a portion of life. You have already died a considerable portion of your death.

—Carl Linnaeus

In early 2018, I legally changed my name to the one by which I’d been known for decades in all ways but the legal and official, the pronunciation of an abbreviated bastardization of an online handle.

In late 2019, I obtained a domain in the .blog TLD based upon that name, at which I then proceeded to spend the bulk of the ensuing Covid-19 pandemic emergency not only newly blogging but also attempting to restore over two decades of posts from countless other sites, services, and domains. It moved around a bit, and went on hiatus almost semi-regularly. Then, in early 2024, I unceremoniously shuttered the entire thing, replacing it with some salient advice from one Franny Glass gleaned from a book I’d suddenly decided to reread for the first time in decades.

“All I know is I’m losing my mind,” Franny said. “I’m just sick of ego, ego, ego. My own and everybody else’s. I’m sick of everybody that wants to get somewhere, do something distinguished and all, be somebody interesting. It’s disgusting—it is, it is. I don’t care what anybody says.”

[…]

“I’m not afraid to compete. It’s just the opposite. Don’t you see that? I’m afraid I will compete—that’s what scares me. That’s why I quit the Theatre Depart-ment. Just because I’m so horribly conditioned to accept everybody else’s values, and just because I like applause and people to rave about me, doesn’t make it right. I’m ashamed of it. I’m sick of it. I’m sick of not having the courage to be an absolute nobody. I’m sick of myself and everybody else that wants to make some kind of a splash.”

—J. D. Salinger

I still believe this. I still believe all of this. There’s a reason at least one of my social profiles continues to carry the hashtag, #FrannyWasRight.

Nonetheless, and with as much surprise and all attendant hypocrisy to myself as to anyone else, here I am again, half a year later, blogging.

Today marks for me the completion of having to date traveled 32,120,000,000 miles around the sun, repeatedly looping through 584,000,000 miles over and over again, year after year after year. It’s a calculation that my late father annually performed for me via card until he died in 2008. I haven’t always thought to remember to do it myself, except that for the past two or three years it’s been on my mind.

Perhaps it’s because I’m so damned tired.

Last year, I penned something of a thank you letter to the Australian teen drama Heartbreak High for depicting an autistic shutdown on the way to an autistic meltdown in a way that saw my own experience reflected back to me, despite being a middle-aged man.

I’ll come back to this.

When I’d closed up shop earlier this year, I was in the midst of what we now know was a fatigue flare. Since being diagnosed as autistic late in 2016, my life already largely had become about careful management of my physical and psychological resources: autism itself is fatiguing. This, however, seemed substantially different in both kind and degree, and indeed over the course of the year my new primary care physician and I came to agree: this no longer merely was the fatigue of living autistically in a world that isn’t itself autistic.

This now also was myalgic encephalomyelitis, or chronic fatigue syndrome, on top of the fatigue of living autistically.

Life, then, has become ever more so decidedly about the careful management of physical and psychological resources, or what the ME/CFS community refers to as pacing, especially since the month of August presented an even more intense flare than that from earlier in the year. In all likelihood, for whatever reason and whatever the trigger, I’m now living at a new, lesser, shittier baseline—a transition I’ve already made once and don’t in any way relish having to navigate again.

After my autism diagnosis, I took myself to Vocational Rehabilitation in an attempt to correct whatever it was that for the decades prior to diagnosis had me assuming that I couldn’t hold a job simply because I was a failure and a fuckup. Alas, my job placement quickly sent me spiraling into autistic burnout and regular depressive episodes complete with sobbing fits both in the bathroom at work and on my bedroom floor at home.

This was the first precipitous drop in my baseline. Not only did the job placement end after six months, but a year later I had to quit the nonprofit I’d help start after five years, after a spectacular autistic meltdown because the strain on my resources smothered my capacity to self-regulate.

Over the course of the pandemic emergency, I gradually leveled out into a new normal that primarily kept me to my neighborhood, although for a time I was making weekly, rather than monthly, treks all the way across town to Oregon Zoo, and my greatest exertion came to be a (mostly) daily walk of no more than just under a mile and a half, my quickest pace about a sixteen-minute mile exercise. Absent temperatures high enough for my heat intolerance to keep me indoors, this remained the case for a few years.

Then everything changed all over again early this year, when I came back from a walk feeling like I hadn’t eaten all day, and in very quick turn the walks stopped altogether because I no longer had the capacity necessary. This, then, is what sparked me to tell my new doctor that it was time to look more deeply into my fatigue rather than continue assuming its entirety was due to the autistic need for intense resource management.

After two months or so, I was able to build back to the occasional walk, although almost never were they for as much as a mile and a half, and neither were they at a pace much faster than the stroll of a twenty-minute mile. By this time my zoo trips had reverted to a pre-pandemic monthly pattern but increasingly I was having difficulty and on several occasions had to turn around and come home when I’d only just barely arrived.

This, in fact, is how August began: with a zoo trip that had me planning in advance for its impact upon my energy levels, stopping on the way to hit a food truck for my go-to restorative meal that I’d often find myself dragging to get after the zoo. Nonetheless, half an hour into my visit, I had to sit down for twenty minutes and do absolutely nothing. No reading. No scrolling. Just sit.

Then I had to gather what little I had left in the tank to make my way back out again to hop public transit back home. It took me fully half an hour just to reach the exit.

There are exactly two days every year that like clockwork make me feel the weight of living. We’ve talked about this in therapy, and I’ve made it clear that I allow myself those two days, whatever other days might or might not press down upon me during the year. I don’t force it. If it happens, it happens. I just don’t fight it if it does. This is the first day. New Year’s is the second. The ones most naturally and wearily inclined to prompt the thought, “Here we go again.”

I’ve spent a lot of time in therapy this year struggling with the possibility that the flare early in the year had not simply knocked me for a loop for awhile but in fact knocked me clear into a new normal, a new, shittier baseline. Much of this time I spent finding ways to convince myself that surely it was the former, and eventually I’d be back to the slow and steady baseline I’d achieved after my autistic burnout and over the course of the pandemic emergency.

August, however, clearly begged to differ.

My reality now is that for all intents and purposes I am trapped within the confines of my neighborhood, where I’ve started to add alternative venues for my regular, weekly brunch out. If I can’t even get myself to the zoo even just once a month, at least maybe my proximal routine can have a few more waypoints and stopovers. Despite being at what by all accounts is an even newer, even shittier baseline than the one I found myself at earlier in the year, I nonetheless kept to one annual action: filing a “Take a Breather” request with the Autism Society of Oregon, which for the past couple of years has paid for my Oregon Zoo membership.

It’s beyond anyone’s ability to tell whether or not I will be able to make much use of it over the course of the coming year, but it’s been such a critical part of my mental health regimen that I convinced myself that it’s not worth risking having a good period at some point over the next year and not having the ease of that membership.

It’s worth noting here that just as I’ve, to whatever extent, lost the respite of the zoo, last year I also lost the respite of the nonprofit alluded to earlier. Having returned to volunteer for The Belmont Goats last year in order to manage their social media presence during the herd’s tenth anniversary, I then months later quit for the second and final time. After the first severance, eventually I was able to return as a visitor. This latest having been the result of an ethical dispute, the break is clean and final.

It’s true that somehow I managed in mid-September to make it to, through, and back from the Soul Coughing reunion show at Crystal Ballroom. In the aftermath month since, however—especially after needing to push myself to clean the bathroom, on what possibly was the heaviest fatigue day I’d ever experienced, because the landlord was coming over the next morning—I’ve lately been dealing with evenings of swollen lymph nodes in my neck and shoulders.

As I write this, I’m awaiting both an appointment for a CT scan and a referral to rheumatology. While my new primary care physician and I came to an early concurrence that my lived experience reflected ME/CFS, they’re still doing all the due diligence, focused mostly with making sure that my pulmonary and lymphatic sarcoidosis isn’t masking something else—like lymphoma. I can’t, however, get the CT until late November, or into rheumatology until late December.

So, I just keep taking anti-inflammatories and wrapping my neck or shoulder in warm towels or stuffing a hot water bottle into my hoodie to keep it wedged in place. It is what it is, whatever it is.

Two months ago, I emailed my mother and my sister with my “future arrangements” First, at my eventual funeral (or whatever) the song “Spitting Off the Edge of the World” by Yeah Yeah Yeahs is to be played. Second, my eventual obituary should read only, “Bix Frankonis, resident of [place], died [day], of [cause] at age [age]. So it goes.”

At some point, I think I also expressed an interest in being disposed of through human composting, although that would deprive me of the headstone which this past week I imagined as reading, “This was an awful place to be dropped down halfway.”

This year, I wrote something of a love letter to a little-seen and critically-panned movie from 2021 that uses The Smiths and their fans to argue that what people want and need is to see and be seen for who they truly are, an accidental sequel of sorts to that post about being seen by Heartbreak High.

It’s not that I saw or see myself in Shoplifters of the World, but that this idea of seeing and being seen resonates with me as I continue my mediocre midlife and slow, inexorable slide toward financial, and then eventual if not rapid physical and psychological, oblivion.

Much like I’d sent that earlier post to the contact person for the autistic actor who portrays the autistic character on Heartbreak High because I thought it was worth it to tell them that their work made someone feel seen, I sent my post about Shoplifters to the filmmaker—in this case to say that despite the film’s wider invisibility someone not only saw it but saw them, saw what they were trying to do.

My email simply said, “FWIW.” Followed by the link.

Two days later came Stephen Kijak’s emailed response:

What is it worth? It is worth quite a lot actually. Talk about being seen - thank you from the bottom of my heart for writing this - the film was completely destroyed critically when it was released deep into the heart of Covid straight to streaming...no premiere, no celebration - 10+ years of work seemed to evaporate overnight. Every once in a while someone gets in touch with a message - not quite like this - but a message nonetheless saying that the film has touched them, connected with them. Thanks again for such a deep and thorough read of the film (and you completely nailed Billy.) All of the characters are based on me and my 80’s friends - the only complete fabrication is Mickey - and while I wrote it, Joe M (and our brilliant costume designer) really brought him to life in a way I could never have imagined. And we all had a blast making this in Troy!

The next day:

I shared your blog post with the cast and crew and it really warmed their hearts.

We just want to be seen.

Shortly before I quit blogging earlier this year, I’d finally sat myself down to binge The Bear.

One thing I noted straight away was that we should all spend more time using things like “Corner” and “Behind” and (perhaps most of all) “Heard”. I’d suggested that I might even be down for it if we all just started saying “Yes, Chef!” to each other.

I don’t mean we should be saying these exact things, these exact words, but that even just in our day to day interactions, we have a sort of duty of care to see each other and hear each other. It was the reason for my taking up the idea that blogging is the empathy engine of the web, and the reason why I’ve said over and over—even just recently yet again—that blogging isn’t dead, or even dying.

Even though my own blogging did, six months ago, because I’d deliberately killed it cold, to try “having the courage to be an absolute nobody”.

Because #FrannyWasRight.

At the very start of this year in which I quit blogging and then later suddenly resumed, I’d suggested that this was the year for the form to pump up the volume, adding irony to the fact that three months later my own volume dropped to exactly nil.

As of today, except for a batch of photography posts for which I’m still needing to solve some technical issues, what I consider my current blogging era—from 2018 until today—is restored and accessible. That’s a larger batch of posts even than where I’d left off when I quit in March. The trick will be figuring out how to make it last beyond me, when the time comes to leave something behind, so maybe the world will see me after it’s too late to matter.

Thirty-two trillion miles is a long way to travel, and that doesn’t even include the miles accounted for by Earth’s rotation, let alone the rotation of our solar system around the galactic focus. That’s a lot of mileage I’ll be accruing even as my autistic and myalgic fatigue increasingly keeps me confined within a one-mile radius here in downtown St. Johns.

The passage of every mile, be it on foot or on orbit, subtracts a portion of life. I’ve already traveled a considerable portion of the way toward my death, and now I’m closing in on the reality that I mostly will move only as the planet carries me around the sun. So, then, maybe all of this is why I’m here, once again writing into the great and yawning abyss of the web: as my real geographies contract, perhaps I’m reaching—flailing, really—toward those ethereal, untouchable geographies.

For now, anyway. Until I quit on it again, or everything else up and quits on me. Which, at some point, it will, and must. As it will, and must, for everyone.

So it goes.

Here we go again.

Referring posts

Originally published to bix.blog by Bix Frankonis. Comments and replies by email are welcome.