Past Imperfect

"Oh I don't normally use AI, I just wanted it to plan my trip"

You lived on this planet for decades, you know what you like, there are hundreds of websites where you can type into any search engine " things to do in [area]" and have at least a hundred different options.

"Oh I only use it so I can figure out what to make during the week with what I have"

The most popular website as you type in "recipes" into google have sections where you click dinner- quick and easy and those usually rely on staples + 1 or 2 items. I found 30 recipes on chicken alone.

"I had a writing idea, so I typed a few sentences into Chat GPT and I was able to write 20 pages with it."

Ok so roads are important infrastructure. A lot of stuff that's important happens on roads. Now, let's imagine that quadrillionaire Matt Stench has decided that the next big tech innovation is the Wide Car. It's a car that takes up six lanes despite seating only one passenger.

The Wide Car is supposed to be the future, and everyone's going to be driving Wide Cars, even though nobody who makes Wide Cars is turning a profit. Employers are offering Wide Cars as an employee benefit, and getting "nah." Some employers are going as far as demanding their employees drive Wide Cars, and the result is that people take time out of their workdays to get in the mandatory gas usage for their Wide Car before driving home in a regular car.

In spite of the fact that the Wide Car is clearly set to fail, there's an enormous push to expand to twelve-lane roads to accommodate a bunch of Wide Cars that simply will not materialize. This is not an organic response to demand, but a speculative investment that amplifies the existing issues with road development for no good reason.

These cars don't fit into parking spaces and make pulling out in parking lots impossible

The weight of big cars is causing additional stress on roads and bridges

The number of big cars and trucks is directly linked to the number of children struck by cars because the drivers can't see over the hood!

once, maybe, she loved louis, when she was truly still a child. and of course he had to believe she always did, at least a little. but through the years following? by the time she died, a grown woman still reduced to his daughter? what love would she have left for him?

she was a vampire. and good at it. she was always lestat’s daughter. she is every bit the evil of his evil.

I mostly do this by following the relevant advocacy and research entities' facebook pages. They will update very frequently with new information.

Some good ones that I follow are The Ehler-Danlos Society and Dysautonomia International (this group particularly is funding/organizing a TON of long COVID research atm.)

There are several pages that collate stuff about ME/CFS also, but I have yet to find like, One Research Entity in the way that Dysautonomia International is. this may be partially because that framing of post viral illness has been primarily used in the UK and I'm in the US; I am sure such organizations exist. If anyone else has any suggestions, please do add them.

I have not found one central advocacy and research hub for long COVID, likely because it is so new and groups like DysInt, which already had decades of connections and experience, are shouldering a lot of the organizing/research stuff. (Although as always if anyone knows of additional trustworthy entities please do leave them in the replies!) If you join some of the long COVID support groups, people will often post links to new studies and articles, although of course this requires more legwork to determine whether the source is credible, it's still very useful for staying up to date on the newest stuff.

All in all: If you aren't embedded in the communities for the people who are most impacted by this, you won't know as much as they do. Because keeping abreast of this is like... the only way we can manage our lives. So. I really truly cannot overstate the value of joining some support groups on FB (or reddit or where ever a lot of patients exist and are talking to each other in large groups) and just listening. Yes, some people will be barking up some very wrong trees, but you will absolutely get people who have the critical thinking skills necessary to understand 1. what we know so far and 2. have hypotheses based on both that information and their lives experience.

It is also possible to find and follow medical professionals who treat these & adjacent illnesses who are talking about their observations and get info that way. Which, again, I do not pretend is the same as Peer Reviewed Studies. But here is the thing. This is emergent. By the time something has been Definitively Proven With High Quality Reputable Research, you're often a decade late. Obviously do not take every single thing someone says at face value, and always, ALWAYS remain willing to update your understanding of something as you gather additional information. But like...

This specifically is a topic where I find the really smug skeptical "cite your sources" type stuff really exhausting, because this is a case where listening to lived experience is actually really fucking useful, and as soon as you say those words people immediately tune you out. (I don't say this to you who sent this ask, you have not phrased it in a demanding or skeptical way at all and I appreciate your ask!) But being in spaces where hundreds and thousands of patients are all talking about their experiences gives you the ability to spot patterns in both symptoms of the illness and the current medical response TO the illness. It's a LOT of information. Information of varying quality, certainly, but using that as an excuse to simply NOT GATHER IT is absolutely bonkers unscientific, ironically!

You know how I'm often talking about alternate epistemologies? This is one of those situations where if you are either unwilling or unable to parse reports of lived experiences as information, you will be significantly less informed.

This is not a space where peer reviewed research is the only valid and useful source of information. A lot of it is very new and emerging, they're complex conditions, and there's simply no way that large, long running, and highly conclusive studies can exist when some of these conditions are less than ten years old. Some conditions aren't new but are only being newly described or taken seriously.

Advocacy groups are a key way to get reliable information. These groups/foundations/institutions are the link between hard research, medical practice, and lived experience. They disseminate knowledge and strategies to the public, and often also advise doctors and practitioners that aren't usually trained to handle these complex conditions in their medical education.

When i started as a dishwasher, i was trained by an old career dish pit man named Claudio. He'd spent his whole life washing dishes. It allowed him to move to just about any city in the world that he wanted to and get a job without having to deal with complex hiring processes or strict resumé requirements. Which was the main thing he wanted out of a career. I still think about him.

He'd seen a lot of people come through that station who either didn't consider it a real job or thought it was beneath them, on their way to "better" or "more important" things. And, in retrospect, those first two days he was sort of doing the minimum with me that he could do and still respect himself when he told the manager he'd trained me.

But, maybe it was because i was really interested in learning all the positions there were in a restaurant because i knew they were ALL important, or because i was a hard worker, or maybe it was because i tried to have real conversations with him in my broken spanish and did my best to not make him speak any english unless he wanted to, but after a couple days there was a big shift in the way he and i worked together, and he started to really teach me.

That place ran the dish pit with one dishwasher, so when he was done training me I was going to be doing the job on my own.

The thing that stuck with me the most, for the rest of my restaurant career, was this... and it wasn't just the actual things he was saying, but a completely new way of looking at what i was doing within the context of how the restaurant ran. I came in for my 3rd day and he said

"When you work alone, you want to go home by midnight?"

we clocked on at 3:30 and took a half hour lunch break and usually skipped our tens, so, yeah i absolutely did want to get off work by midnight

Then, even tho i already knew where most of everything was by that time, he took me around and showed me all the dishes, cups, pots and pans, spatulas, silverware, had me look at all of it. Then he told me to remember that almost every one of the dishes I was looking at would be used more than once by the end of our shift- we were clocking on to wash the entire building full of dishes multiple times.

Then he led me back over to the industrial dishwasher most restaurants have, which looks like this:

and then this 60 year old career dishwasher from Mexico City said the thing that changed how I looked at restaurant jobs forever

"This machine takes two full minutes to run a cycle. We are on the clock for 8 hours. That means we have a maximum of 240 times we can run this machine. If you want to wash all those dishes, clean your station, mop, and clock off by midnight? This machine has to be on and running every second of the shift.

If you don't have a full load of dishes collected, scraped, rinsed, stacked, and ready to go into the dishwasher the second it's done every single time? You can't do it. If, over the course of 8 hours, you let this machine lay idle for just one minute in between finishing each load and being turned on again? Instead of 240 loads, you'll do 160 loads.

[like, literally, he had done this math, he had these exact figures]

160 loads instead of 240 loads means you are doing 20 loads in an hour instead of 30 loads. That means the dishes are going to pile up. The cooks will run out of pots and pans and will have to stop and wait for you, the servers will run out of plates and cups and have to stop and wait for you, and your night is going to SUCK. Every part of how this restaurant works can grind to a halt because of that idle minute between dish loads, and if it does you'll have an entire building of people in a hurry and all waiting on you.

And it means you're going to be here until 2 am doing the 200+ loads of dishes this restaurant goes through every night.

For this to work, you MUST have this dishwasher on and running every minute of the shift. As soon as you turn it on you have two minutes to have the next load ready. See these large items i put to the side down here? One or two of them takes up all the space in the machine. I keep them here so that if the machine finishes and shuts off before i'm ready for it i can stick one of these in there and turn it on again immediately. You have to think like that to do this job without stress."

The way he was looking at how the whole restaurant ran, the way he was looking at how he'd spend each minute of the entire shift, the way he broke down what the physical limits were and how to max them out so he could do his job and go home on time without stressing out... The way this 60 year old guy, who had never had professional ambitions beyond being a dishwasher, was still such a competent and brilliant expert in his field.

It was all such an important lesson, and one that stayed with me through every position i went on to work in restaurants, dish pit, busser, server, cook, all the way up through manager before I finally got out of my restaurant career

Claudio never wanted to be anything but a dishwasher who didn't stay any later than he had to.

But he knew how that restaurant ran better than most of the other people in it. I never had a chance to truly thank him for the specific lesson he taught me, because while it had an immediate impact, I didn't really understand how valuable a lesson it was until much later.

In my younger years I worked at a medical office that managed both mental health and addiction recovery. The company had purchased an empty lot down the road from the building we rented to build a better facility with larger capacity. The CEO worked for months with the architect, and just as they were finalizing everything they happened to let me - who was the receptionist at that time - take a gander at the blueprints. It took all of three seconds for two major issues to jump out at me.

“The receptionist can’t see the waiting room from her desk with this layout.” I said. “It’s around the corner and blocked by a wall.”

“Is that important?” They asked.

“Do you want me to be able to keep track of the patients who are waiting?” I asked.

“Isn’t that what the sign-in sheet is for?” They asked me.

“Not everyone who comes here is signing in for an appointment, some are coming to check in, some people are here for the group therapy and need to be directed to the other side of the building, some people are painfully shy and if I don’t appear warm and inviting they won’t approach.” I explain.

“How often does that even happen?” They asked.

“Every day.” I explain.

“Bullshit.” They said.

“I’m not joking at all. Also, where is the chart room?” I asked.

“Oh, over here.” They said, pointing to a tiny closet on the far side of the building from the receptionist and check out desks. It was tucked neatly beside the CEO’s office. To get there the secretaries would have to go through two sets of security doors and it would be a five minute walk each way.

“Why isn’t it next to the front office, since that’s where the people who use it are?” I asked.

“We had concerns about people just going into the chart room to goof off and not do their work. It takes them away from their desks too much. You should only go in the chart room twice a day - once in the morning to pull the charts for the day, and once in the evening to put way the charts. It would remain locked and the CEO would have the key and let you in to supervise.” They said.

“We pull charts the day before so everything is ready to go and we can alert staff if a patient with additional needs is coming in. We have to go in the chart room every time a patient calls in that’s having a problem with their meds or is in crisis or otherwise has a question for the nurse. We have to go in there every time someone cancels and we are able to fit a waitlisted patient in. We go in there 20 - 30 times a day for legitimate reasons. The only reason any of us has ever gone in there to take a minute was when we got news that a patient had died and we were crying. And even then, we filed charts as we sobbed because no one in this office has free time.”

They stared at me.

“Sit with me for an hour and see what happens up here.” I said.

They took the blueprints away from me before I could keep looking at them, but they took me up on sitting with me. They didn’t last an hour. They changed the blueprints to fix both things I’d pointed out.

Unfortunately, they didn’t let me keep looking at it and they never asked the janitor what he thought, so no one caught the final fatal flaw in the design.

There were no closets in the entire building. Nowhere to put our supplies. And I’m not talking just a place for stationary and pens. I mean no janitorial closet. Nowhere to put paper towels and toilet paper or cleaning products. Nowhere to put holiday decorations or anything at all. They completely forgot about storage of any kind and immediately started eyeballing my hard-won chart room for it.