This is going to take a while.
Did you know there were 170 executive orders in the first six months of the Administration? You do now.
I am neck-deep in data, telling an AI what time it is in GMT-5 because it keeps forgetting what year it is, which would probably bother me except that I also mostly don’t know what year it is. I am scattered, unreliable at best, which I feel bad about but find it difficult to really ponder. I am aware that other people experience time in a linear fashion, but what I have learned is that bullets can kill time. Or at least they can, if you’re thinking of time as a thing one can experience rather than as a measurement of some kind of progression. Time blindness, you see, is a superpower. I have only just realized that it’s been months since I published anything, because I have been working on this project and that is what now consists of, and now is always. It is also never, although it comes before and after things. Clocks tell me that seconds have passed and I have puzzled through hours of thinking, or hours may pass during a single thought. What begins to matter, when time no longer tethers one to objective reality, is whether the thoughts are correct. The thoughts are the only thing that matter really, because thinking is how one learns things, and learning things is how one builds things, and building things is for some reason the goal. In practical terms, this means I might tell someone I will call them right back and then I will, in five months. It also means alarms. Endless alarms, all set to play different songs and different vibration patterns to tell me whether this is an appointment or a due date or just a reminder of something, or perhaps it’s time to eat. Left to my own devices I eat when it occurs to me, which might mean three dinners in an hour or nothing at all for two days. I average seven alarms an hour, and there’s a cascading amount of checklists triggered by said alarms: as I’ve got no idea how long it’s been since I slept I also have no idea whether I last answered a food alarm four or twelve hours ago, unless I track it. I am blessed to live in an age where I can build my own Panopticon, systems within systems of redundant data capturing so that I cannot possibly lose myself, made as passive as possible. Should my brain break, should there be an accident, should anything anomalous happen, there are LOGS about it. Down to the minute when I’ve slept and how restful it was, whether my body temperature is acting weird, whether my heart rate is impacted in predictable ways depending on whether I eat beef or not. I am so tied to time that it is nearly a blessing that it has ceased to exist, as I’m not sure I could otherwise take the pressure.
What I’ve decided very slowly and all at once is that I’m just…look, I’m fucking disabled. The kind of disabled where it’s perfectly reasonable to have a thumb drive to hand to doctors because it would take too long to zip all my medical files into a folder and email it and if I don’t show up with my own data they will assume I have none and I’m in the ICU on vague owies looking for a morphine drip. (I have lost my ability to anchor myself in linear time; I ain’t lost shit knowing how the world works.) Point being: one of the reasons I have not published much is that honestly? It’s a lot of work to do anything structured. I live in a rigid structure; adding to that has diminishing returns when I don’t think in any particular fashion anymore. Before all of this, things began and ended; now sometimes I remember when I have done something and sometimes I watch the same movie three times in a row and am surprised every time by the twist at the end. Thinking is more like stepping into an ocean than following a path.
This will probably make a lot of sense to anyone who already experiences this, by which I mean there is a really specific community around people with the kind of TBI which leaves one capable of what passes for a normal life. I have found it soothing to just talk to other people with my kind of brain, because our injuries are as unique as fingerprints and honestly nobody has bothered to study us much so really we don’t even know what’s happening to us, we don’t all share the same damage but we do share the same breaking and it is that which we seem to find in common. We tumble around and forget things and it doesn’t matter because we were discussing something and it will come back or it won’t, which won’t matter as we will have forgotten it in that case. Anyway, if some of this sounds like I might need to see a specialist, I agree with you but the kind of specialists I need are brain people, not mind people. TBI is mostly associated with soldiers and football players, both of which are careers in which one just gets one’s brain rattled a lot. Partially this just because the technology to really get into neurology hasn’t existed until recent decades, and partially it’s because we spent a fortune on a forever war and built a better tank, which led to less deaths to IEDs but skyrocketed the amount of folks getting violently jostled and then had to deal with that. Still, the majority of people who are accessing decent TBI care are the hard cases, people who have not managed to build a life which takes into account that our brains are just not like they were in some seriously fundamental ways. Not that there is a decent standard of care really, mind you, but people who seem to be coping simply aren’t the ones being studied because by definition we’re unexceptional. The definition is wrong, but that’s never stopped a good theory.
It is fascinating, though, to be able to live nearly outside one’s own self. There’s some Rubicon of medical complexity where you stop feeling pain on its own and start analyzing it, which habit then extends to everything. Am I actually angry or am I simply trusting the wrong neural connection? Am I tired because I thought too hard or because my body is busy doing some new thing it hasn’t told me about yet? And again, I cannot tell you how strongly none of this matters to me, because it is simply what is happening right now, which will last until it’s over and then change when this now becomes not-now. There’s not really much point assigning too much value to any particular feeling, as experience is subjective and I might only think I am angry. Maybe I’m actually quite content. I’ll find out later, and by then it won’t matter.
I have now forgotten what I meant to write, which is fine because I have this list of things I need to do. Also I think the music is wrong, Spotify tells me I have listened to this song forty times in a row and if I change it I will start thinking about music, so I will save you that stream of consciousness. I know that I mean to make a record of this, because it matters that we know what happens to someone’s brain in predictable response to circumstances where possible. Maybe in a decade or two more people won’t spend years figuring out how to survive when one has been forcibly separated from the experience of linear time, as perhaps we’ll be able to say “oh yeah, everything that ever happens to you ever again will have very little to do with how long you think it’s been since anything else happened. Here’s a software stack and a set of recommended alarms to start, you’ll want to tailor those.” That would have been nice. But it’ll probably take a few people who are free enough to speak honestly about it, and I happen to be one. I doubt I’m hireable at a job which is terribly dependent on time existing, but I could be if it was pretty much all I focused on, and I am sure many people do that but then they can’t exactly tell people about it, as it sounds fucking mad. Perhaps it is, but not disturbingly so. As it turns out, a life outside time is a life lived on a beat that lasts forty loops until it doesn’t suit, and then another that does. I wouldn’t wish my complexities or challenges on anyone, but I do wish I could share the instants that last lifetimes that are just the right beat.
This.
So much this.
All the this.
Also, this is useful. Thank you for writing it.
Sincerely,
Fibromyalgia brainfog ADHD person married to a TBI survivor with Long COVID