Category Archives: Musings

Neurodivergent Writing for Neurodivergent Readers

Seeing a conversation about traditional publishing, and the issues with it and how books that seems like a treat don’t make it through because traditional publishers just don’t know how to market it my mind went on a tangent.

What if we allow ourselves to write for a non-traditional audience? If you’re neurodivergent, like me, you may know that you have trouble to sit down and write some of the thoughts and stories you’d like to write because you have this idea of what traditional writing should be like.

For a while, after having a long period of severe aphasia, and memory loss, and my mind just wasn’t putting words together, I was able to write smaller sentences again, and kind of string them together into something someone could read. I could tell it wasn’t an article, it wasn’t a poem, nor musings. But in a way it could be all of those things. I was letting myself write to the little capacity I could, and it brought my joy and I could tell others saw themselves in some of it.

We tend to get hung up on what we think writing should be. Because we’ve been taught all the rules. It’s common to say that knowing the rules are needed in order to break them. And it may be true in some cases. But what if we just let go?

What if we just let ourselves write that sprawling messy story, where we don’t go from point A to B in a straight line, but we jump to D and C, maybe X and J, on our journey to tell whatever we’re telling.

Let yourself write in the way you think. And let that be it. You can always come back to it, and create something else out of it.

Don’t restrict yourself with writing the perfect lines. Just write for the joy of it.

Sometimes, when I give myself time and space to think, connect the dots and so forth, I also am able to write something down in a coherent matter, like this post i wrote just now while having breakfast, because a conversation between friends hit the right notes.

Happy writing. 😻

Dealing with Depression, Lockdown Edition

The people in our household have come to the point where we’ve lost count on how long we’ve been in lockdown, especially since we started self-isolation long before that, but a few things have become clear: Lockdown depression is here to stay.

Disclaimer: I do not have a neurotypical brain, as I probably have ADHD. The content in this post may or may not be relevant to you.

So, it might sound macabre to say that the lockdown depression is here to stay. But to me admitting that I was actually dealing with depression again, when it’s been some years since depression was my main issue, made all the difference, because I know how to deal with depression. The past few years have mainly been physical issues causing depression like symptoms occasionally, and there is a difference between the two. Knowing what your dealing with makes it easier to bring out the right tool kit. Like you wouldn’t try to use an Allen Key for a Phillips screw. No that’s not true, we’ve all tried it, because getting the other tool would be too much work. But we also know how it ended: the wrong tool didn’t help you handle the problem nearly as efficient as the right one could’ve. That said I feel like it’s also important to note that efficiency isn’t everything, and do not let the perfect be the enemy of the good, but if you have the right tools available to you, do take a day to try them.

When I realized that I was dealing with depression and remembered that I have an entire toolkit to deal with depression, which is slightly different from dealing with anxiety and other ailments, I decided to get to work.

The first try actually resulted in a severe backlash, so be aware that your mind may punish you for trying to fix all the things at once. At first when I realized that I can help myself feel better I started by trying to take a walk every day, and showering and cooking etc, all at the same time. And for my brain (I dunno if this is a ADHD thing, a me thing, or a general thing) just went “what the actual fuck”, and kind of shut down even more and led me to be more depressed. This was when I realized that just taking better care of myself wasn’t going to cut it I had to restart entirely. For me this was when I decided to really get back to basics.

What do I mean with basics? Well, this will vary for different people and I’m sure I’ll get plenty of tips from you all after reading this as well, but for me it was this:

  • I don’t have to do anything.
  • I chose one thing every day that I want to do (emphasis on want), and try to do that.
  • Forgive yourself.

Disclaimer 2: If you have a family and children or pets to take care of this will probably be a lot harder to accomplish at least in the way I’m going to describe it. But if you find yourself depressed in such a way where you’re not taking care of yourself or them this may be the place to start. For example: if I had still had a dog my one thing every day would be taking care of the dog by a small walk with them and feeding them. That also ended up being where all my energy got allocated, and then I’d return to bed and cry, or go to the computer and distract myself while being very numb.

Context: one of my most extreme ways to get out of my depression was leaning full into it. I was in my early 20s, and I had all these “must”s and “should”s looming over me, and it was making me sick. Even writing about it now makes me feel uncomfortable, and I can feel those sensations in my body. I had to remove myself from everything that had “I have to” or “I should” attached to it, until I was ready. So I stopped showering unless I wanted to, I ate danishes for breakfast or dinner if I so felt like it, or a pint of ice cream. All of these were associated with myself, I still took care of my dog even if it was the bare minimum. I don’t remember how long this period lasted, because it’s well over 10 years ago, and I don’t recommend it as a first solution, but when nothing else works I know I’m the back of my head that I can always try that. But, since this wasn’t the extreme I wanted to go to yet, I needed a different method.

Step one was telling myself to stop trying to force the good things to happen. Stop trying to force myself to do all the things (which had caused a backlash), but I didn’t want to go as extreme as I had in the past.

Thus I decided to choose one thing a day that’s what I want to get done today. Saying that I “want” to do it, rather than I “have to” do it, also makes all the difference. There’s a cognitive difference there, and even if you know you’re tricking yourself by changing the wording, it may help. For the past week I’ve been doing this, and every morning (or noon or late afternoon) I’ve decided on a thing I want to get done that day to make myself feel better about having done something. Today it was to take a shower. A few days before that I wanted to make a proper meal, enough for leftovers which I could have later. Each of these things made me feel better that day, and by me saying this is the one thing it relieved a lot of pressure from myself because I didn’t have to do anything else, unless I felt like I could, and I still did good.

Choosing one thing that you want to do every day doesn’t mean you won’t do other things. You still can, but it’s important to remind yourself that you don’t have to do anything else. Earlier this week when I also had “shower” as my one thing, once I had I felt good about having done my one thing, so while I was in the kitchen I ended up wiping off some surfaces, I helped my house mate in the garden, and I made late lunch for me and them. It’s important for me to reiterate here that this isn’t supposed to be a trick to tell yourself that you only do one thing today, but then secretly plan other things, your mind knows these things, so be careful of creating backlashes because of that.

On Saturday this weekend, I spent all day doing nothing and eventually realized that I wouldn’t get one thing done. I chose to forgive myself for that, that I can’t always do something. Some days are just going to be horrible. That night had been terrible, and I had not gotten nearly enough sleep, and I needed to just wind back down from that.

In choosing to forgive myself I removed the pressure of “I have to do something today”, yes even the one thing is some pressure, which I try to make it fairly small, and beneficial so the cost is outweighed by the reward, and so I can get it done first thing when I get out of bed. Removing that weight from my shoulders helped me relax again, and eventually that evening I sorted out a box so we can move some boxes upstairs (I moved into a couple of my friends’ house a while back, and we’re still shuffling stuff around). I do not think I would’ve been able to do that if I hadn’t forgiven myself.

Another tip, bonus, is to be the friend to yourself you’d be to your friends. Tell yourself all the things you’d tell your friends when they were struggling with similar things as you. If you can’t do it in your head, try writing it down as a conversation, or something like that.

In these trying times we need to take care of ourselves and each other. For me sometimes the best community care is self-care, because the better I feel the more of myself I can give to others. You can not pour from an empty cup.

How are you dealing with your lockdown depression? Or mitigating it before it even turns up?

Staying casual in the intentional

I decided to focus on writing more.

It’s easy to find yourself wanting to only produce marketable content™.

And then I remembered that a lot of you are here reading because you like the words I have put out in the past.

Not all of that was marketable content™.

Sometimes it’s just words scattered on the page, on a page, on any page.

Even on days when that big article is on the back burner, because I already processed a lot of it today, I can write something like this.

It doesn’t have to be fancy, or perfect, or well thought out.

It can just chase a feeling down the page.

Getting more poem like with each stroke.

Stroking my touch screen keyboard, swiping the words, producing a melody.

Or entirely failing to produce one.

I don’t always have to perform and be perfect.

I don’t always have to achieve. I can just be.

You can just be.

We can all be together and share small things of ourselves that we recognize as each other, but also us.

You see yourself in me, knowing that you’re not alone.

Knowing that there are other voices out there, hurting or laughing just like you are.

You know that they have gone through what you’re going through right now, and somehow they survived.

That means that you can survive too, and take a few more steps to get through today.

And then down the line, when these words still sounds like waves flowing over the sand.

Flowing over my touch screen keyboard as I swype, or swipe these words, producing more melodies.

Bunched up with memories, you get to share your story to someone else.

Who’s just like you, when you first heard those words many years ago, when you realized you weren’t alone.

Now they know too.

You do not have to write a blog post only to publish marketable content™.

You can just be you.


This poem was not sponsored by my patrons, but it could be in the future. If you would like me to be able to write more of them, feel free to head over my patreon and check out the tiers there, $2 will hopefully eventually start sending poetry straight into your inbox! (it’s a process)
Alternatively, check out my support page for more info.

Admitting Defeat: this is a rough one

CW: suicidal ideation, capitalism, chronic illness.

A friend reached out to us, in our shared community, after having struggled with emotions around their chronic illness around the new year. The New Year always comes with resolutions, people making big plans for the year to come, and for some of us with chronic illnesses, especially ME/CFS, it often means coming face to face with the fact that we can’t produce anything of worth. I say this in this way because this is basically what capitalism has taught us. If we can not work a full time job, or even a part time job, we are of no worth. This is something which is incredibly hard to disengage from, and avoid feeling when you’re feeling vulnerable, and unable to perform and “contribute the way you should to society”.

The person who posted this, and made me think about it, shares a lot of wonderful thing with us in our community, and they are definitely contributing something valuable to people around them. Everyone has something to contribute, and I guess a more socialist or even communist view of it would be to see how we all affect each other and contribute to each others well being, even if we can’t all do the same physical or mental activities.

When I am reminded of this, the dread also creeps up on me occasionally. And sometimes it also brings me ideas of suicide. Thinking what purpose do I have, if I’m only a burden, wouldn’t it be better if I wasn’t here, if I wasn’t taking up space? It’s easy to hit that wall once in a while. Some things we try to not think about because they’ll only make us want to kill ourselves. No, I’m not speaking for everyone with a disability, but I do feel from what I’ve seen other people talk about that I am not alone in this.

I’m currently in a situation in my life where me and my partner is looking for a house or flat to buy, and we need money, and a mortgage to be able to do so. Me not having an income, and not being able to take a normal job without great risk to my health, is becoming a problem, and it’s becoming a problem for me personally because it’s causing me pain every day. Even if I know I can’t work, I still started to look at jobs and trainee positions, and especially equal opportunity employers.

So, while it’s possible to think of it as only mind ghosts, it’s also a reality of pressure we find ourselves in. What can we contribute or produce to be allowed to live?

This also reminded me about my own goals, that I had in the 3rd quarter of 2019, when I relaunched my Patreon. At the time I was high on a summer of energy, and recovery and being so much more healthy than I had been in years. I was ready to take on something new, and I felt like the week of conferences had proved that to me. I was ready to head out and do all the things. Then I was hit with the flu, slipping down the stairs, another cold, and winter stomach flu in the span of 2 months, and it really drained me. The last one was just around Christmas, and I’m still recovering from it all.

So, what about admitting defeat? I have felt defeated by my intentional goal of actually going out and seeing the world and attending these conferences, but having been unable to for the past 4 months. Therefor I’m deciding, for my own health’s sake, to take a step back, and focus on what works for me. To focus on what I can do right now. And I know that I can write right now.

Since I don’t know how much I can write yet, I want to set the goal a bit smaller than I would’ve attempted otherwise, and it is that I want to write one bigger thing once a month. One article that I work on through the weeks, and if I have 2-3 shitty weeks that month I should still be able to publish something.

As you can tell, I’m still feeling the need to produce something of value, even though I said what I said at the beginning of the post. If you follow me over on Mastodon, you may have just seen me published a big thread about asking for support, so I am going to end this blog post with an actual call to action, where, if you read a few blog post last year from here, or just read this and felt struck by it, and recognize yourself in it the idea of labour being the only measure of worth, please consider supporting me on Patreon, Liberapay or Ko-fi, a monthly donation if you can, of even just $1, will go a long way to help me settle into my new life, and let me focus on something that has always been with me, and that’s writing and connecting with people.

I hope to connect with more of you when sharing my thoughts and reflections on things and topics. If you’re curious about other writings I’ve done here’s a sample:

“Tech”:
Activity Pub (the Conference)
On Mastodon and Nazis
“Political”:
On Bi Visibility
Deradicalization and who can safely do it
Vi ska inte behöva… (in Swedish, about healthcare)
Poetry-ish:
When Life Beats You Up
Crutches
A Whiff of Fallen Leaves
Sick and Sick

Thank you for listening.

What a year 2019 has been!

This has been one heck of a year, for a lot of reasons. Very few things went as planned, but over all it has been a very giving and interesting year. I want to sum up some major plot points in my life, and reflect on it slightly. This may end up much longer than I intended, but here goes!

January through March

The beginning of the year was kind of hectic, I was still studying while very fatigued and I managed to hurt my arm just before an exam which made everything extra hard. I spent time with some of the other students who failed that same exam and we did our best to get through the re-exam. This hiccup meant I wasn’t getting my student loan in the beginning of the year, which was a bit painful. By a bit I mean very painful. Being without money caused a lot of internal, if not external, panic.

In early February, which was when that re-exam took place, my partner went home to the UK for Lunar New Year. I had completed my Bachelor’s paper the spring before, but needed one more course to complete the actual degree, I took those points during the fall. So, by now I had sent in to get my certificate and it arrived while my partner was away. It had happened, I had finished my degree!

When he came back to Sweden one of the first things he said to me was that he wanted us to move back to the UK. It was something we’d talked about a few times and decided against, until now (then). We had just found out that his sister was pregnant, which was also one of the reasons we decided to move. It’s very rewarding being around infants and small children in general, so this was a big draw for me.
Another one of the reasons for us not moving back to the UK was that I had not finished my degree yet, which was why we lived in Sweden to begin with. With me receiving my degree certificate, it meant that I was now done. Even though I was currently enrolled in studies for a lot of practical reasons (but that’s another post which may or may not happen).

In January / February I also worked on reviving the ForkTogether project with a few other people. We published a blog post about it, where we announced the new name, Florence, and got to work. This blog post will probably not talk much more about Florence, but it’s a project that’s very dear to my heart, and something I will keep working on in 2020, as well, and our latest update is here.

Overall my health was pretty bad at the beginning of the year, I had very low energy and I couldn’t really do much, walking anywhere left me exhausted unless I wore compression socks. Over Christmas, my mother had offered to buy me compression tights to make my life easier, but since I had been considering going to see a private doctor I, in turn, asked her if she would be willing to put that money towards helping me go see one, as a way to look for the underlying cause instead of just treating symptoms. She agreed. I don’t remember when I actually made the appointment, but I made it for April 9th, a day before my birthday. And it was in Gothenburg where my mom lives, so I planned to go see her as well.

I don’t remember much of what I did in March. I know I was studying this term as well, but I don’t remember what we did. I’m going to assume I was trying to study as much as possible, while planning for moving to the UK, and spending time with my partner before he went over there. The plan was that he’d leave early April.

April, and the beginning of change

April came, he left to the UK a week before my appointment and I went to my mom’s place. We went to the doctor together, who had scheduled two hours for me. I was finally getting checked out properly for the first time in probably 7 years. Yes, the care centers had done some small things to help, but a lot of the time they just let things slide and we had to start the process all over again, and most of 2018 I had just given up on the Swedish health care system.

My appointment was in the afternoon, so I had missed the slot for some of the blood tests, and they sent me home with a kit to bring to any lab at any clinic. However, this did not go nearly as smooth as I would’ve liked it to. I ended up having to go to two different places and none of them knew what to do with the kit. Turns out that the instructions got lost somewhere along the way, they were supposed to be inside. Eventually I got the blood drawn and I got to go back home and rest.

At the appointment my new doctor and rheumatologist had quickly diagnosed a few things which felt obvious, EDS (Ehlers-Danlos syndrome), and a high possibility of Fibromyalgia, she suspected psoriasis but mainly in the nails. I was also given cortisone to rule out other rheumatic issues. The blood tests would later show that I also had hypothyroidism.

Towards the end of April I received medicine for hypothyroidism, Levothyroxine, and it started making a difference within 3 days. Which was when I noticed it by biking. Biking had been something that while it was easier on a lot of my other body parts, like knees, hips and neck, it still always felt like I was dying. Not because I couldn’t breath, but rather because I didn’t have energy in my muscles. That said, breathing was hard too, but more like a weight on my chest. I had never been able to fully put it into words, and most definitely thought that I had worn myself down so much that I couldn’t bike because I had 0 fitness. This was something which had stayed with me for 5 years, at varying degrees. Logically I should’ve known it wasn’t my fitness level, since in the beginning of this happening to me I was going to the swimming pool regularly. (I could go on a tangent here on how I most likely have POTS as well, as it’s common together with EDS, which was somewhat alleviated by the swimming pool because of the extra pressure it put on my body, remember me mentioning compression socks?) Going to the pool was the few moments I felt sane. When I stopped going was when my health started to deteriorate more, and with less swimming, and less relief it was harder to go back to swimming and get that relief. Most of this I did not connect the dots on until quite recently.

So, it was the end of April and I could bike without feeling like I was dying. Mind you this was just the first step in getting stronger, as it improved over time. I had two other benchmarks which really helped me realize what a difference it made, the 2nd one is completely lost to me right now, but the 3rd one was biking on the highest gear without problem (I had been biking in the lowest gear for the past 3 years, at least).

In April I had also gotten in touch with someone who needed a dog sitter, and as such I met Hamilton. He became a staple of my daily life, and also helped me with some of the benchmarks in my health. I was still sick when I had accepted this, because I felt like if I’m home all day every day, unable to do anything, I may as well do that and make a small amount of money.

May and meeting Hamilton

In May I was still trying to stay up with school, and study. However about halfway through the month I threw both hands up in the air and said “FUCK IT, I need to live, and I’m finally able to do so”. I came to the realization that I had been residing in Malmö for 8 years, but I hadn’t LIVED in Malmö during most of that time. Now was my chance.

Most people that know me know that I’m polyamorous, it’s not something I hide, but for the sake of this particular blog post, I am not going to chronicle what I got up to once I got some underlying issues treated, and got energy back, while my partner was in a different country for 5 months (which is how long we stayed apart). I will however say that I was quite lovely to feel my sex-drive return, and me just being kind of high on life and willing to go out there and meet new people. And for the love of everything that is holy: Do not read this as I only went out to meet new people to have sexscapades with.

Anyways, I made friends with some more polyfolx, and went to two meetups, one which I arranged (for women and trans folx). The first one, the pub meetup, I met up with an enby whom I become close friends with on Facebook first. We talked about lot of things we had in common. And slowly it turned out that we were both the same age, and born in the same city. We doubled checked the early background, but we had not crossed paths in our youth, however we could connect to childhood memories with each other because of the spaces we had occupied while not at the same time. We had even moved the same path to end up in Malmö, and it was just very serendipitous moment to connect with them.

Towards the end of May there was a Poetry Slam competition in Malmö, the Swedish Championship. I went to that event alone, for 2 of the days I mostly hovered, and the 3rd day I dared to speak with people a bit more.

One of the evenings I went and sat at the bar at the afterparty afterwards, and just relished in the feeling that I could sit in a crowded and loud bar and not get completely exhausted from it. So I sat there alone and wrote for a few hours before I decided to go home.

The poetry slam did inspire me poetry wise, which is to be expected. I wasn’t able to get a lot of the inspiration channeled into anything, probably because at this point in my life I was all over the place. I was just about recovering energy and able to experience life, and after doing one thing I was always ready to go on to the next thing.

The last evening I made another friend whom I’m definitely still staying connected with. Another serendipity, we only started talking the very last night, but seemed to get each other very well and understand certain ways that the other thought or experienced certain types of things. It’s hard to explain, but I feel like we both managed to share an experience with each other that the other understood well.

The mornings I spent with Hamilton, and the afternoons and evenings I spent at the Poetry Slam. While the dog may not be written about a lot, he became very important to me during these summer months. He kept me company and forced me to rest when I needed it to. He’d insist on me sitting on the sofa with him instead of the computer. So I’d often sit down with a movie or series and have his big head in my lap. He was with me about 2-3 times / week.

June, July—Diagnosis confirmed

Now we’re up to June, as the Poetry Slam ended just at the beginning of June, and the summer really began to hit us. Very warm days started to come on, and I realized that Malmö is a very underrated Beach City. Like it’s less than a 20min walk from the city center (or central station) to the beach, by the ocean! And I began swimming regularly, almost daily, even starting a group on Facebook just for women (and trans people) looking for other people to go swimming with.

Now, I want to reconnect to some of my medical stuff that I was going through. I was following up with my doctor in early June, and while the cortisone hadn’t really done much while I was still exhausted from not getting energy from eating, I later asked my doctor for another course of the cortisone. This time my pain levels went down significantly. Unfortunately, while I was on this cortisone course I caught a really nasty cold. I had gone swimming in the ocean, which probably wasn’t the best idea, but I was just so happy to finally be able to live, and I had trouble stopping myself.

This cold lasted for almost a whole month (there’s more details here, but I lost my voice for 1.5 weeks among other things, and it wasn’t just one cold, but rather one cold and then a bacterial infection, bla bla), from end of June to mid-July, by which I received a course of antibiotics from my doctor in Gothenburg. I had noticed that the infection made most of my pain go away. And she was like, “okay that confirms you have an auto-immune”, at this point I was diagnosed with Psoriatic Arthritis.

I got prescribed Etoricoxib to take down the inflammation and reduce the pain. I think I was lucky to get prescribed this immediately, it happened that way because I already knew that my stomach was too sensitive for long term Ibuprofen. And considering I had just about recovered my stomach after 5 years of suffering with issues, I did not want to screw it up again. It actually worked very well, even if I’d complain in the afternoon that the pain meds stopped working. But days I did not take it were a lot worse, which helped keep me humble. It was prescribed to be taken every day.

So, the antibiotics helped me, and I began feeling better quite soon. My mom had noticed major changes in how much energy I had, but was still often very worried. However, she had her own benchmarks to notice what was up. She’d reflected on that after I was out and about I was still able to go with her to the store. In the past I’d rarely even been able to be out and about while visiting.

This had marked my 3rd visit to my mom’s place since the first doctors appointment. And it was lovely that I had the kind of energy where I could just pack up my bag and head to her place on very short notice. And I could go visit a lot of my old friends.

End of July, Seeing Old Friends

Speaking of visiting friends, in mid-July after this appointment and antibiotics I went on a big trip to visit friends and family, because I wanted to take the opportunity before I moved to another country.

For this trip, as I didn’t know if I was getting better yet, I only booked one leg of the journey at the time. I started in Gothenburg, since I had been to see my doctor. And over the next 2-3 weeks I went through 5 cities: Kristinehamn, Västerås, Stockholm, Falun, Gothenburg again, before I returned to Malmö. I had originally planned to go through Uppsala as well, but those plans had to change unfortunately, lucky I didn’t book all tickets in advance.

Through these cities I was visiting a load of old friends, catching up, going to museums, attending my first 40th birthday party of one of my friends, visited my grandmother’s grave, strolled through Stockholm on the hottest day of the year (thus far at least), went swimming a lot, worked on my tiny netbook (which a friend helped me install an ssd drive and Linux to revive it slightly), I got to spend time with my family, both my mom and my dad (who live in different cities) and my sisters, their family and kids.

At this point I was doing (and had been for a while) so much every day or every few days, compared to before I got any medicine, that my sense of time was very skewed. I had gone from being able to do one thing a week, usually going to class, and then spending the rest of the week at home, and now I easily did 3-5 things in a day, and rested to keep my balance. The biggest difference when it came to resting was that it could be enough to just lay down for 30min, in order to ground myself, or watch an episode or two of a TV series, before I was recharged enough to head back out on more adventures.

August, packing to move

Finally back in Malmö, it was already August, and it finally hit me. I was moving, and soon. I had only 3 weeks left, and it was time to get a battle plan together, I still hadn’t really started to pack that much stuff. At the same time I needed to wind down from my trip.

I honestly do not know how I managed to get through the last push of packing, selling and moving. I was lucky with a few things, I got the bed sold for a decent price, and a friend was just moving back from Sweden after a few years abroad, so she came by and bought a lot of my stuff.

There were some hiccups with the moving company, who wanted to come after I needed to be out of the house, and some fun things like that. Which were incredibly stressful.

At the end of it I just got through it thanks to pure stubbornness. I cried through some of the last of it. But the very last night, I was with one of my new friends, and we had really good food and watched a movie together (at their place because I was staying there), and they helped me just wind down, now that it was all over.

September, visiting Prague

In the middle of moving I went to Prague for a week, before I went to the UK. I was in Prague for 2 conferences, first something called Rebooting the Web of Trust, and the other conference was ActivityPub. This week I got to spend with old and new friends, but none of whom I’d ever met before.

It was an interesting week, which I definitely should’ve written it’s own blog post about, as I’ve not actually done much reflecting on Rebooting the Web of Trust, yet. And we’ll get to in this blog post why I haven’t nearly written as much as I would’ve liked to this autumn.

I made two very good new friends, people whom before that week was even over felt like I’d known forever, and they seemed to feel the same thing. And the other people who I spent a lot of that week with definitely are closer to me now than they were before.

I think one of the biggest things for me this week was, balancing and recovering from the moving stuff, even if I was in the middle of it, and busy with these two events. I was definitely testing my boundaries, and stretching them, in a way which was definitely risky.

I was invited to come to Prague as a speaker for the ActivityPub Conference. And it was a great experience meeting everyone, as well as finishing off the week in Prague with all these people working on different things within the same space. I even wrote a really big blog post about it.

Entering the UK

I arrived after a really long week, and a long day, at the Manchester Airport. In Prague I had tried to get on the wrong plane because I was just completely drained, and then I started crying because… well I was completely drained and stressed out. Luckily I caught the right plane, and I was finally seeing my partner of 5 years, after being apart for 5 months.

When I first arrived I just slept, for a week probably. I was just so tired. I kept being tired, and even into October I wasn’t feeling better. And I began to worry that I had screwed up, that I had burnt myself out even more by doing all the things I did during the summer.

Lucky for me it turned out that I was on a too low dose on one of my medicines because me and my doctor had experimented with a lower dose, but because of the move we hadn’t followed up to see how it was going. It was one of my anti-depressants that had been on a lower dose for quite a while, and I believe that the additional stress just made it harder to recover without that extra crutch. Towards the end of October I upped the dose again, and started to feel better.

In October we also had family wedding celebrations to attend to, and we both had it close to where we live, as well as going to London for a weekend. This mostly took up most of October both time and energy wise.

November, December, cold season

Early November the entire family caught the flu. Me and my partner caught it worst, and were more or less strapped to bed for over a week each, and he took much longer to recover than I did.

In early December I caught another bout of a cold, and I slipped down the stairs, and was sick for about 3 weeks. During this period, I was so tired of being sick, but I wanted to not repeat the summer’s mistake, so I did my best to rest properly and get better.

Just before Christmas I was finally rid of my cold, and able to spend it with the family (my partner’s) here in the UK, instead of going home to Sweden like I had planned. And on Christmas day the entire family got hit with the Winter Stomach Flu. This lasted for about 3 days.

And this is literally where the year ended. The last 3 months of it I was very low energy, and sick most of the time, or drained due to too low medicine.

If any of you wondered where I went during those months, that’s pretty much the explanation, and it’s made some of my projects suffer, and me emotionally suffer as well. Because I’m happy about being here and meeting a bunch of my new and old friends here in the UK as well.

Hopefully 2020 will be a much better year, and we’ll see more of each other now.

When life beats you down

I moved to another country, it was okay that I felt exhausted.

I felt like I should be recovering faster, and be back to my new old-self.

I didn’t realize that I was out of sync with medication.

As well as attending family weddings.

As well as visiting new friends.

As well as…

I was just exhausted. And I didn’t admit it. I didn’t know how to deal with it.

I was supposed to be better now, stronger. I had moved countries, packed every box in my own.

I was strong and on top of the world. Why was I zapped?

The medicine imbalance took months to figure out, and a day to fix, or so I thought.

I felt an initial surge of energy. Slept 5hrs. “I’m back”, I yelled. Immediately heading out again.

Drained. I had to start over again. The self-destructive behaviors started creeping in.

Screwing more with medicine, not sleeping, eating too much sugar, not leaving the house, gaming all day, losing time.

What was I protecting myself from?

Nothing. But I was still out of balance, still not ready.

I decided to rest. To take all the time I needed.

Then I caught another cold. Every muscle in my body ached.

After two days it felt like it broke. My throat was still sore, but I was ready to take on the world, again.

Then I slipped down the stairs. Only half a flight.

More worried about the pistachio shells flying across the carpet, than my newly burnt knees.

I heard the panic in everyone’s voices, as they rushed to check on whoever fell.

I would’ve gotten up. Usually.

I felt defeated.

I was finally going to get shit done, and this happens? Why?

I just sat, collected my legs.

Are you alright?

“Nothing’s broken”. Other than my soul.

Crushed by obvious defeat.

This fat fuck doesn’t leave the house and now she can’t even get down the stairs on her own.

Intrusive thoughts.

I had only slipped.

I had slipped because my feet were slightly less rugged than the day before.

Now my knees were rugged instead.

I cried.

Eventually got up.

Went back upstairs and asked for a cup of tea.

To nurture my soul.

To reflect on the pain.

No blood.

No swelling.

No bruising. Yet.

Pantless, the revealed burns, just raw nerve endings, breathing in the oxygen.

“I was ready to take on the world again today.”

Maybe tomorrow.

On How do you make time to write?

When I read this question today the first thing, and the truth, that came to my mind was “I don’t”. Then I wondered why? Why don’t I make time to write?

The problem isn’t that I’m not making time to write, the problem is that in not making time to sit and be bored.

Taking the time to do nothing, walk the forest, or sit in silence. I realized, by being asked that question that I don’t need to make time to write, I need to make time to fill my head with the things I want to write. Then the time writing them doesn’t have to be as long.

A silent ride on your commute, no music.

An evening without movies, or games, or books.

I fill up my alone and still time with sounds, or I sleep. I don’t give myself those minutes I need to just put two and two together to want to write something.

When I was younger it was incredibly important to me to write every day on my blog. That was the only way you grew I felt like. On the other hand I had a close friend 10 years ago, who took the time to think and waiting for the puzzle pieces to fall into place before he was ready to write down his posts.

I don’t think this is for everyone. I don’t think it was always for me. I used to write things out as soon as possible, even live blog events. Maybe I did that as a process to be able to move on to the next event, conference, happening to cover. I needed to clear my head.

These days I’m more like my friend, I wait for a lot of puzzle pieces to form in my head before I write them down. This works most of the time, a lot better than trying to write when you just have a tiny kernel, I find waiting for the cup to be full makes it easier and less painful to measure (sorry about the mixed metaphors).

This line is thinking is now more relevant because NaNoWriMo literally just started. Where people are pushing out 50k words in a month. And I wanted to participate, in a way that fits me and where I am now. With this post in mind, I think I’m going to take 60 min every day, while I’m alone and just sit with my thoughts, and see where it brings me.

That said, I also believe that learning new things is an important part of writing. Reading new books, from new cultures. Reading experiences from people who are not like you. Find some piece of history to engorge yourself in.

Never stop learning, and you’ll always have something to write about, just remember to give yourself pause, and make space, rather than just time, to find something to write. Give your head rest, and take a deep breath.


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Bi Visibility Day – Taking Space in the Quiltbag

LGBTQIA, or Quiltbag, there’s a B in there which stands for bi(sexual), and even though it’s been there since the first iteration of the acronym I used (HBT), I’ve never felt like I fit in, in LGBT spaces, or pride events.

That said, the first one I went to 10 years ago, HBT Festivalen in Gothenburg, Sweden, there was a panel, or talk about bisexuality being so much more than just liking two genders. And I got it unveiled for me as a spectrum, and how there’s two sides of it, both romantic and sexual which both have a long spanning spectra all on their own.

This has stayed with me through the years, and maybe not really sunk in until just recently. I’ve started to see how it fits into my own life, but also learnt about how a lot of us bi women are afraid of other women because we just don’t know how to deal with each other. This inherent belief that men are easier.

Earlier this summer I met a woman, I dunno if she was lesbian or bisexual but it doesn’t really matter too much. She taught me that I wasn’t alone with this fear, and that a lot of bisexual women simply don’t go after other women because we simply don’t know how, or we’re afraid to for a reason or another.

Being taught this, and her helping me cross that threshold, it has since been easier for me to actually keep trying to reach out to women I like. I still feel like men are “easier” to deal with, but I find myself finally able to dare speak with women and flirt, and take that next step.

Yesterday for Bi Visibility Day, a friend brought me to BiPhoria in Manchester as a way to get to know new people (since I just moved to the UK), and apparently it is something that always comes up “Am I bisexual enough?“, often enough for it to be on their website. BiPhoria also happens to be “the UK’s longest-running social & support organization for bisexual people”.

Am I bisexual enough?

This question that keeps plaguing us, how can I be bisexual when I’m married, when I’ve only dated men, when I don’t really even dare to talk with women?

At the meeting another aspect of it was brought up, and that’s the statistics of it all. There’s likely to be more men who are into women, than women who are into women (who are bi), and that’s why it’s very common that bi women are mainly dating men.

Yes, of course there are lesbian women who also like women, but I think a lot of bi-women may feel like maybe they don’t want to trick a lesbian cis woman. While this could also play both ways, it seems like there’s this belief that women only like other women (while also liking men) to attract men. Which is both a harmful myth, and one that’s probably helped women come out as bi a lot easier, because they’ve had room to play around.

Why is that harmful as a myth if it allowed us space to explore ourselves and each other? Well, bi-men have not really gained that opportunity to the same extent, so it’s possibly been a lot harder for them to come out as bisexuals because of it. There’s possibly a lot more stigma around it (still). Is it because you’d be labeled as gay, in a derogatory way, or is it something else?

I don’t think we inherently, as people who are bi, believe that being gay is bad, but it’s still something that’s thrown around in society as a slap across the face for a lot of us, no matter our space in the quiltbag. We’ve come a long way, but we still have a really long way to go when it comes to acceptance of ourselves, each other, and acceptance from others.

As some people much wiser than me have said, we don’t want to be merely tolerated, we want to be accepted and allowed to live, breathe and thrive in this society.

This blog post doesn’t cover nearly everything I wanted to talk about after yesterday’s meeting, and unfortunately my mind is slightly too scattered right now.
That said, please be kind to your fellow friends in the QUILTBAG, we’re all in the same boat, and let’s fight for each other’s right to exist.


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On De-radicalization, and who can safely do it

It has been a recurring theme lately, that every time someone decides to block an instance that’s harbouring racists, Nazis, far-right (whichever title you prefer), where “freeze peaches” come to their defense. These are people who put Free Speech of SOME people higher than anything else, instead of viewing it from the holistic perspective of who does this “free speech” oppresses or kills by extension? Note that their first thought is to defend Nazis, not to defend the people under attack by Nazis.

“They want me dead. I can’t speak at all if I’m dead. So they’re not REALLY in favor of free speech, they just don’t want to have to acknowledge that other people’s views are valid.”

The argument eventually comes down to “But they have to keep interacting with you, even if they want to kill you, so that YOU can work to de-radicalize them”… 

Just let these words sit in your mouth for a bit. 

You’re asking people who are hounded, assaulted, killed, to do the work to de-radicalize the people who want to kill them. You’re not asking yourself “what can I do to help de-radicalize them, while this vulnerable group of people protects itself?” This is always where we end up, you tell the most vulnerable: Why don’t you just de-radicalize them. Why don’t you, who are fearing for your life just debate your existence and right to exist to these people? Why don’t you?

And yeah, that’s the question isn’t it? Why don’t you, if you’re a man, probably cisgender, most definitely white (or feel like you’re at least not not-white), and heterosexual, why don’t you put in the labour to de-radicalize these people who are constantly attacking the people who are everything that you are not? Why don’t you take the time to sit down and talk with them and untag us from that conversation? Who don’t you protect us?

You are the only person for whom it’s safe to have this conversation, for whom it’s safe to actively work towards helping us. And it doesn’t have to be helping everyone, it can just be one person at the time. Or simply decide that every time you see someone in your group of peers being attacked by these people you donate $1 to Life after Hate to help them do the work they are doing to de-radicalize people.

You don’t really want to de-radicalize them though, do you? All this jabbering about “JUST DE-RADICALIZE THEM” and it doesn’t seem like you’ve even put 5minutes thought into what that means. Rather you’re just using that as an excuse to attack us further, attack us for reaching for self-defense instead of debating our existence… over and over again.

So here we are: Next time you’re tempted to argue de-radicalization, ask yourself, why ain’t I?


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On Mastodon and Nazis

mastodon mascot

For the past 2 years Mastodon has been promoted as a place without Nazis. Anyone familiar with social media technology knows that it’s not necessarily possible to entirely make such a promise, especially with a network which allows users to set up their own village to invite their friends.

The Fediverse is the interconnected villages of decentralized alternatives of popular social networks such as YouTube (PeerTube), Twitter (Mastodon), Facebook (Hubzilla), SoundCloud (FunkWhale), Instagram (Pixelfed), to mention a few.
 It isn’t immune to Nazis, but offers the tools to everyday users, and local leaders (administrators and moderators) to protect their village from them. On Twitter you can report, and block, but then you have to sit around and wait for that content to maybe get removed or maybe not. On Mastodon you get the chance to join a village, where you know that the admin has made a promise to you that Nazis, racist, or homophobes etc. aren’t welcome there. If your admin doesn’t fulfill this promise you have the power to move to a different village. With Twitter you simply can’t do that.

Nazis on the Fediverse: Gab

On the 4th of July, a big group of Nazi’s migrated into their own little village: Gab.com. They used Mastodon’s software to run the village. Gab has been a home to Nazis for a very long time, and anyone who’s been keeping an eye on social networks that keep popping up knew that their policies would welcome a lot of dangerous people. Gab the Social Network actively encourages people to harm other people, and let people run loose with harassment, all in the name of Free Speech. They have also been directly linked to a mass shooting. Yes, we could argue that mass shooters have been on Twitter and Facebook too, because duh it’s social networks. The major difference is, this place has become a breeding ground for these kind of ideas, and they are actively encouraged.

The Vice Article

This migration into the Fediverse by these racists and Nazis caught the interest of VICE, who wrote an article now proclaiming that Mastodon “the nazi-free alternative to Twitter, is now home to the biggest far right social network”. 

This is incorrect. While Gab has made their home in the Fediverse, they are not the biggest instance. The Vice article utilized numbers from fediverse.network displaying user count to decide that gab was the largest instance on the fediverse. 

A list of the top 5 instaces by user count on the fediverse
list of instances sorted by user count

The marked instance in 3rd place, is the Mastodon Flagship instance. The instance in 2nd place is pawoo.net which is a Japanese equivalent to DeviantArt. 

How can an instance so new have so many users? 

995391 users. Here’s the tricky part, they don’t. Not really. Basically what they did was migrate all the existing accounts from Gab. Simply just importing all existing accounts, including suspended and inactive ones, all old beta accounts from 2016 (because as far as I know they have not actually cleared any of those old accounts). So this number, while it sounds incredibly big doesn’t translate to much in activity:

List of instances sorted by activity

Comparatively they are not nearly as high up, but still fairly big. There are a few ways to spoof and fake numbers that show up for these stats. The below screenshot was taken just a few moments ago (and less than an hour after the above ones), here banana.dog is on the top of this list:

Eugen (creator of Mastodon) points out himself that:  

Gargron commenting on Active User count numbers being removed from Gab.
toot by Eugen about Gab removing Monthly Active Users

“Gab already removed the Monthly Active User counter from their frontpage (a default Mastodon feature). That’s easier than faking active user numbers I suppose” — Eugen

Their public timeline is also filled with spam posts, for accounts which haven’t been suspended, and even if those accounts were suspended they would still count as a body for the user count.

Is the Fediverse riddled with Nazis now?

No it’s not, unless you join a village which actively wants to communicate with them. First, let me cover how Gab migrated to the fediverse, and what that means for communication. Simply put, Gab installed a radio station (Activity Pub), by making a copy of the Mastodon software, and making it their own. This means that they can now call all the other villages if they so please. Or at least attempt to call the other villages. A major part of the Fediverse and Mastodon servers prepared by preemptively blocking gab.com, before they officially joined on the 4th of July. By blocking them, we’re effectively not listening to their radio station.

Unfortunately because the radio waves are publicly available, they are still able to listen into us, and “interact” with our radio shows (Public Posts), on their side of the fediverse, even if we refuse to listen to them (by blocking them). This is a flaw in the current design in the Mastodon software, and to some degree the Activity Pub (the radio waves). There is a lot of people on here who are working on the software, or are at least interested in it are working on different ways to deal with this issue, and hopefully we’ll be coming up with even more creative solutions in the future.

To use Eugen’s own words. Mastodon has still hard-lined against Nazis, and their fairly new covenant, enforces that by deciding which servers JoinMastodon.org will advertise for. If you don’t follow the covenant you wont be featured, if you’re a racist / Nazi instance you wont be featured. 

On top of that there has been massive efforts between instance (village) admins to organize against this influx of racist and Nazi users. There are even apps developers have decided to block gab.com users from connecting through the app (eg. Tusky and Sengi — full disclosure, I merged the feature to block gab via Tusky as I work for that app). And users are actively sharing lists of Fascist-harbouring instances that they have blocked. 

We are still here, and we’re still fighting Nazis and by no means welcoming them into our midst.


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