When the world around you gives up and forgets you

While a lot of the work I do do is public and visual, all the work I can’t do, is for quite obvious reasons, invisible.

That I can stream may be indicative of the fact that I should be able to work. And maybe it is but I just can’t see it myself, maybe I haven’t gotten far enough to make something worth while out of it. This isn’t a text about giving up, but rather about feeling invisible, and it’s going to get personal and it’s going to suck. But here goes.

I most likely have Chronic Fatigue Syndrome or something similar or close to it, while I thought I was already diagnosed with it, it turned out I wasn’t diagnosed with the Chronic one, even though I can trace it back to being 17 years old, if not earlier. So there’s things I need to do to get the help I need to be able to live, things that I can’t get myself to do because I do not have enough energy. Energy in this capacity is often referred to as spoon, as per Spoon Theory, which tends to help people who struggle with mental health or chronic pain issues, explain why they do not have energy, or why they can’t take care of themselves.

I am a very sociable person, I’m just bad at reaching out to people who are important to me, and family in particular. I reach out to my family when I’m in trouble, and I wait until I’m in a deep hole I can’t get out of on my own. I reach out to friends who I have showed that I can pay back when I can’t afford to pay off some shit, especially since I thought I had a job, turned into me not having a job, and not having an income and now I can’t pay them back. No, this isn’t a begging for support, post. I’m beyond that. I won’t do it, it’s not my style. So I’m here providing content, if you may, so there will be a reason to support me, and the stuff I do.

Other visible things I am able to do, which you probably see that I do is the streaming, which I already touched upon. Streaming is something I can do from home, without having a shower (on my worst days), and push over that threshold of anxiety that would leave me paralyzed and not able to leave the house. Again this loops back to “But if you can stream, why can’t you get a normal job?”, who would want to keep me hired if every few days I collapse in tears, or can’t get to work because I’m exhausted or crying? What work could I do that doesn’t drain me entirely? There was one thing, and it’s something I may be able to do again, and that is working with community and taking care of community.

Sharing this post, may actually turn into being detrimental to getting a possible job in the future, so be it, because I need to talk about these feelings.

Yesterday, which I guess is the trigger for this, I saw that people close to me, close to my heart was finally close by geographically, my sisters. And they were just across the bridge, and if they would’ve wanted to, they could’ve seen me, or let me know that they were “in town”, I would have dipped into those savings and headed over, because being allowed to see them if just for a few hours, instead of spending more than 16hrs of travel to try and go to where they live (I say more, because 16 is if you go by car, with no stops). But I did not get the chance to go see them yesterday, or if it was the day before, who knows when Instagram shows you these things. I did not even get a “hey we’re going to be in Copenhagen, but we can’t make time to see you for x y z reason”, I could have lived with that. But I’m afraid that they didn’t reach out to me, because they know I don’t have enough money for rent, and probably didn’t want me to ask for money to be able to see them.

I am considering throwing myself out on the job market, even though it scares the crap out of me, and then work myself until I’m totally exhausted and broken and end up on full-time sick-leave again, because that would be a way to pay the rent. Unfortunately, because I’m in between, and not sick enough, but also not well enough I can’t get help. Because I followed my heart and my passion last year, I lost any chance to get supported via the Swedish welfare system, because that system isn’t adaptable to people like me, people who may get spurts of energy, but then be nonfunctional for the other 75% of the year.

Maybe this is why my rate is pretty high, because I need to be able to afford not being able to work. I need to be able to pay the proper taxes and insurances to handle getting sick. Does that mean that what I can give when I can give isn’t worth it? I wouldn’t think so.

Who wants to support someone who’s just sad and depressed, that’s what we ask ourselves a lot of the time isn’t it? Even when we are being supported, we view ourselves worthless, because in a capitalist world, you’re only worth as much as you can produce, and maybe even then you’re not good enough.

What I’m trying to say I guess, is that I do not know how we’ll be able to support ourselves this fall, but we have made due this year, barely scraping by, with some extra pushes around Xmas, and for my birthday. If we can’t get money from studying this fall, we may be fucked. But we’ll deal with that when we come to it.

Making due, and barely making due. We’re okay, I mean we have a roof over our heads, but as soon as we can’t pay rent anymore, then what? I don’t know. Anyways, summer still has a lot to bring, and I can maybe write more again, finish the revamp of my patreon, continue streaming, and figure out if I have enough energy to squeeze anything else into this. Thank you for reading, and… I think you know where the tip jars are, if you feel so inclined.

The first #ForkTogether meeting, and what went wrong

On the 30th of June, we had the first Fork Off Together meeting, for which the goal is to fork off from the Mastodon project. The idea had been simmering for a while, and the required logistics was a lot bigger than one person could do on their own, yet, I tried to do it on my own.

Let me explain, I was not doing it on my own per se, but rather I was doing a lot of the preparations for this one meeting alone, even if I had two people that I worked fairly tight with, at one point my head just got too tired to properly communicate with others about what help I needed, so it more or less got easier to “just do it myself”, or ask my live-in boyfriend for help, as I could point and grunt at things, when words wouldn’t come out properly.

So, what went wrong with the first meeting?

To start off, over all it was a good experience, but we definitely had some teaching moments which we seemed to, as a group, react well to.

However, I want to start by pointing out what went wrong from my side ie what I could have done better or different. This isn’t about placing blame, but rather a reflection on why I did it the way I did.

So, my initial idea was based on something that I had experienced and learnt when I was active in the Pirate Party here in Sweden between 2009-2014. The organization had a way, which is common (from my understanding) for certain types of organizations, namely the type that has a lot of smaller organizations under the same umbrella. Eg. political org or youth organizations that wants to try and get funding for their work locally.

Having this kind of meeting, is a way to make it easy to start up one of those new small orgs, only requiring 3-5 people, and being youth orgs it meant that they could get a little money from the government. This also doubles as a means to encourage youth to get engaged in activities which will in the long run keep them too busy and away from crime, (but don’t quote me on this, this is just my general understanding of the concept).

What I tried to do was leverage that knowledge I had, to have our own startup meeting, and jeebus I had to try really hard to not accidentally use that term.

In the political org case, it was easy to adopt the same bylaws, coc, operational plan etc. because we were all part of the same organization. This was definitely my first mistake.Unfortunately I didn’t mentally connect the dots until the actual meeting, and I couldn’t have done it different at the time.

I need to highlight here, that the accepting the bylaws and things during the first meeting of this kind was based on it being a sub-association of a bigger org. There wasn’t supposed to be a need to do to much with the bylaws and if there was it would’ve been done before the meeting.

In my foggy mind I didn’t get this out in time and worded correctly. Heck, I had even said “no we won’t draft bylaws” before I realized the translation in full. I could have, and probably should have, checked myself when I realized that that document translated to bylaws. But I didn’t.

Another member of the meeting wrote some good reflections about this type of meeting too.

If that was my first mistake, what was my second one?

I thought that I could distance myself from responsibility and active choices by leveraging that I was just inviting people to a meeting. I didn’t want to make decisions for us, and this was the only way I knew how.

This isn’t as much a mistake as it is paradoxical. Mostly because either way I make decisions and it becomes a really weird situation. Especially if I couldn’t get all the info out of my head as fast as the questions came my way.

About 14 days in I was able to entirely fall apart, and did some public spectacle which didn’t reflect well on me, and also ended up possibly harming the project, I pushed away some people I really wanted in on the ground floor.

I could make excuses, and I could try to explain myself, but it won’t change anything. However, what I can do is recognize that I did screw up and that I can do better in the future. I understand my why, and that means that I can take preventive measures.

So, what preventive measures can I take in the future?

A big one, delegate. While we were 3 people working together in the early days, the same people who’ve also rejected any direct involvement in management, or interim-committee or the committee / board for the first year of this project, I did a bulk of the work and had trouble getting stuff out of my head.

When I felt like I was about to entirely break, the incident referenced above, I should’ve let go right there and just set up a Discord server and invited everyone, and continued to contribute to the group in their process of preparing a meeting together etc.

But at the same time, if I hadn’t done the meeting the way I did, I would not have learnt the lessons I did, so this is a double edged sword, imo.

So, what went right?

I took my time, and worked through it slowly. I built small road maps for myself to guide me along the way and asked for help when I felt stuck.

I need to remind you all that the survey blew up way bigger than I had ever expected. I think by the end we had almost 200 responses to the survey, and over 120 saying “let’s do this”. [link to the shared data on June 11th]

I couldn’t have planned for that, but when it happened I tried to baby-step my way through it.

The meeting, even though it was long and had it’s issues, was also pretty damn fantastic. The way I had translated Swedish meeting formalities to a discord server turned out to work pretty well, and once people got a hang of it they seemed to appreciate the somewhat rigid structure.

I hope, that using this experience I can create a template for hosting a first meeting when a group of people want to start an org together, and maybe I can help someone else avoid some of the problems that we encountered. Because there’s some solid structure here that definitely can be reused. That said, I will be publishing a separate post about the actual meeting structure and how set it up.