Life has been moving forward lately. I have been very busy in the moments my body isn’t killing me and everything around me is improving. So why then do I feel so at a loss? So underappreciated and overwhelmed?
For one Trump is trying to make it policy to surveil the social media accounts of people on disability to “root out fraud,” but really it’s to keep an eye on us and make sure we’re sufficiently miserable to deserve being on disability. It will kick people off who look like they’re having too good a life. This is a terrifying prospect for me, who is trying desperately to earn my own living using social media to drive traffic to my writing. When the warm weather hits and my body wakes up again I intend to resume traveling for my blog Catching Marbles – but how many trips out will be seen as too many to really be ill?! Following my social media only shows you a tiny slice of my existence – the good days. I don’t write about all the days in between where I’m “crashing” just to sustain the few activities I’ve chosen. I do not lament about the migraines which down me for three days at a time sometimes as often as every two weeks, at which point I don’t even get up to eat. Nowhere will you see how flaky, flippant, and totally unreliable my good days really are. And there’s good reason for that – because I actually want to keep family and friends! Do you think I could achieve that if I’m always Debbie Downer?! I don’t want pity or concern I want respect and to be treated as human. That’s all. And I have every right to enjoy my little outings when I can. There is nothing about being disabled that means I have sit around sulking for all my days.
The precedence these policies set are cruel and invalidating and I am very concerned not just for myself but for others with invisible illness. Hell, even those with visible illness could be at risk if it’s not piteous enough! I am feeling increasingly unwelcomed in the country I was born into – as if society is telling me I shouldn’t exist. It’s a hard thing to swallow when you get this day after day from all corners.
And another blow was reading up on the state of the writing profession yesterday. It’s bleak. They did a survey of authors and found our income has gone down 43% because Amazon is now selling its own books as “slightly used” for cheaper to the public – with a final caveat – that authors are not paid for “used” books. Even authors who are successful are still living well under the poverty line earning on average $20,000 a year on their books. That means writing novels has become a side job or less, a hobby! Since the advent of books this has never been the case. Now I see authors doing all their own advertising, all their own promotion, literally everything in the process and get paid less and less for it. Other book authors I have talked to say they make their living as “content creators.” In other words the books are a curious little thing on the side but really they make their bread and butter on AdSense ads on their blogs and YouTube channels. Does anyone else find this alarming?!
I wrote a book about my life – in seven months I have sold six copies to people I know. Because I am a woman and it’s about my life it’s labelled a “memoir” even though “road book” might be a more appropriate title. The subtle sexism in the industry is also frustrating beyond measure. Maybe I was naive but I thought if I accomplished something as grand and crazy as publishing a book it’d mean something…. like I was getting back on my feet, that I could be financially independent someday but nope. It’s done nothing. Nothing at all. I could have made more money selling Girl Scout cookies for one day.
And so I am here trying to swallow the fact that I may never be financially stable enough to be truly on my own. That little cabin in the woods surrounded by a small farm? Pipe dreams. It’d be easier to be a fucking rock star at this point. And that makes me so angry because it’s not that crazy a life goal!! So I am trying my hardest to concede that I may just need to once again swallow another part of myself and find someone to “take care of me.” It repulses and reviles me to even think about entering that unsteady power dynamic again and it feels like I am shredding every feminist ideal I ever grew up with.
For the past few years living back home I have been free to reflect upon my life and become the person I wanted to be – the person I was hiding from the world for 31 years. I realized that when I was young I tried to be the perfect girl for my family and society and then I got into my first serious relationship and tried to be the perfect little homemaker but it didn’t work because I’m none of those things! So I have gotten in touch with who I really am – a happily gender-fucked androgynous individual who also happens to be pansexual and polyamorous. Can I deny all those core identity features, let them die in my gut again, so I can rope myself the stability of a monogamous heterosexual relationship with a man? Should I even have to make that deal just to survive? Because I feel like something in me is dying and it’s making me unbearably sad.
Yeah I am still fighting. I’m still moving forward. I’m still trying. I’m still clawing at this glass hill like the rabid badger that I am but it’s only because this has become all that I know. And I am still filled with anger. I’m angry at society for dismissing and throwing away disabled people. I’m angry at society for not valuing artists. I’m angry at myself for not getting farther in life. I’m just fucking angry. ALL. THE. TIME. But that’s good because the day the anger dies is the day I’ll probably blow away in the wind, having nothing left to hold me here.
*All photos in this entry taken by myself, Theophanes Avery