I’ve been having a lot of health problems these past three months. Every time I think I can get back to posting online, something happens immediately afterward. (This last week is insomnia. I wish not sleeping meant I could just hop online at 3 AM and schedule posts instead, but the increased pain from lack of sleep makes me less able to type and think.) It’s frustrating because it makes it so difficult to express myself and interact with other people. I’ve also had my skin condition flare up in ways that make moving and flexing my hand difficult, and a lot of times where I can use a mouse but can’t type or can type but can’t use a mouse!
The other reason for my absence is that I will not survive if I don’t get some sort of financial support for my creations. I live in a capitalist world, a world that is incredibly unforgiving for most creatives and is all but impossible for marginalised ones. Unfortunately, disability means I need more money than most, not less, to survive. The medication that makes me most functional isn’t covered by the PBS because of my age: I need to find $35 AUD a month in addition to my other many medications because the government thinks I’m too young to need it. I’m aware that my life would have been even worse without this medication, which ... well, it’s hard to type that without crying. This disaster is the best I seem to be allowed to get at the moment, and that’s heartbreaking. It’s just heartbreaking.
I can’t even halfway function anymore without that medication, and I can’t afford to take it on a regular basis. But because of my disabilities, I find working regular jobs difficult. I need work that lets me work for an hour and then stop for three when my hands are bad; I need work that lets me not work for a week when I can’t. I need a flexibility that isn’t dependent on someone else’s schedule, and the only way I know to do that is through my own work.
But, because I am disabled, I can’t create my usual content and make content for a subscription service like Patreon at the same time. I’ve had to take time off one to prepare content for the other. I do not know how well I’ll be able to interact with my community and make subscriber-only extra content at the same time when the first one alone was already difficult, and because I’ve been so struggling with sleeplessness and porokeratosis and migraines and pain, I didn’t get enough content prepared ahead of launch.
I’m going to have to think about this blog, what I can do, what I should do, what kinds of interactions I can keep up with, what I can’t. For one thing, I have 700 posts in the draft folder waiting for tags so I can queue them, and I’ve moved to posting four times a day because this is getting ridiculous. But I’m also considering moving to a no-tag format to cut down on my workload, as much as tagging is important for access, filtering and organisation. The (very full) inbox is another dilemma. Maybe if I do two asks a week instead of trying to keep up with everything as it comes in, which I very much can’t? I don’t know. I really don’t.
The reality is that this blog gets more replies, asks, messages and content-added reblogs than I can ever keep up with. That alone would be a full-time job for a disabled person like me. But if I do all that, I can’t do the work that I’m hoping will someday help me conjure that extra $35 AUD a month. I’m ignoring a lot of you not because I’m ignoring you but because I cannot respond to you if I want to do other things--and sometimes those “other things” aren’t “draft a subscriber-only post” but are simple things like “fold my laundry” or “make lunch”. It’s the hardest thing in the world to not even have the spoons to talk to my friends when they want to talk to me, and the guilt of not being able to communicate with other people when they approach me isn’t that much easier to bear. Do I write a post that expresses myself or do I talk to a friend? What if that post is important for me to express? How do I manage all this when my spoons are so limited?
(The things that may help make blogging and internet interaction easier for me cost money I don’t have. If I could dictate to someone who’d type my stories, for example--because fantasy names, speech to text and my Australian accent and autistic-fast speech are a disaster of incomprehensibility--I’d have more spoons for other online work. But I don’t have that money, so...)
One of the reasons I’ve been putting together the Aro Arrows site--an archive for aromantic-themed stock images--is because it’s something I can do for the community when I can’t type or express myself in words. It makes me feel like I’m doing something worthwhile even when words (typed, dictated) are impossible, and I think having free-use stock image options for professional websites and publications is important for a community looking to grow beyond Tumblr. So another thing I’ll be looking at is finding a balance between stories/posts and non-text-based creativity, because it’s easier for me to do a bit of both instead of mostly one or the other.
I’m in a difficult situation, and I see no good way out of it. Other than the realisation that I need to make my creativity help me pay for my medication, which means--because I am disabled--recognising that if I concentrate my spoons on that, I have to let go of or make compromises on other things. Do I know yet how I’m going to do this? No, I don’t!
In the meantime, if you have a $1 a month to spare and you want to support me, I do now have a Patreon. I’m posting something new every day this first week, which so far includes an exclusive Marchverse story, early access to a new Hallo, Aro story and early access to DNI-style aro arrow pride banners (part one, part two). There’s more banners and another exclusive story to come in the next couple of days as well.
Thanks so much for reading and your understanding. It’s genuinely appreciated.
