Hey peeps, it’s been a lifetime, huh?
Sorry. It’s been difficult to reach out, difficult to face this shit. I had really high hopes that the ADHD meds were going to give me my brain back, but after some more scans, more info — more time — things are proving to be complicated.
For some of you, this might be the very first newsletter you get from me. (Who the fuck is Sadie Sins? Wait, is that the writer of The Paranormal Academy for Troubled Boys? Demon Bonded? That really weird monster fuck fic?) Yeah, I still live. I used to write these things weekly. I used to be a very enthusiastic, fuck it all and write a ton of words, oversharing everything type of person. Life has just kept knocking me down though, and I’ve become rather, I dunno… disheartened, if I’m real. Quiet and cautious. But it’s a new year, my mind is set on hitting some writing goals already, and yeah, we’ll see how it goes.
The Good, The Bad, The Medical
So… where to start? I guess we can do a good news, bad news, good news thing. Try to balance shit out. I guess good news would be… fuck, I honestly don’t know the last thing I updated with you peeps. Let’s see… Okay, so let’s start with the BEST good news. We adopted 2 kittens!
Harlequin is the ridiculously precious pink nosed tabby, and her brother Malachite is the handsome tuxedo. It was a gift to be able to adopt siblings (my twin brother and I were adopted together, and although not cats, I know that going through big changes like that is much easier with a friend.) They came to us slightly feral, but now they’re cuddlebugs (with boundaries) and are getting along well with our two senior cats. These babies have really been magical. They make sure I’m awake at the right time of day (food time) and then let me sleep until they want to play. They needed a lot of attention when they came to us as kittens, and it’s been worth it. They really are the sweetest.
Also, they found a cluster of cysts in my pituitary. No clue if they’re what’s causing the lack of communication with the adrenals, but it’s something to watch just in case other issues start happening that could be caused by the cysts changing size.
Some amazing news is that I’ve taken down the clean room! My allergies are under control, and the reactions I have are nothing like they were when they were knocking me out or causing screaming pain. I still have issues, but as long as I’m not exposed to anything so extreme like the house being taken over with mold, there’s no reason to believe that my symptoms will ever be that bad again.
I’ve been arting a bit, getting into sculpture lately. I started because when Halloween hit, I didn’t want to deal with the mold allergies when carving a pumpkin, so I carved a foam pumpkin — which I think came out pretty damn cool.
I’ve been trying to get a couple of other things made, but it’s been more difficult. I think I’m not so good with small art, fine details (even though I love details.) I worked on this painting for a bit, doing a mix of acrylic paints and posca markers.
I want to finish it, but to be real, traditional painting needs certain lighting I’m not sure my eyes can handle atm.
As for why it’s not going as planned, aka, the worst bad news…
This is actually really difficult for me to talk about. I’m still processing it, trying to face what it means for me long term. It’s basically why I haven’t had an update for nearly a year now, and a reason for a lot of issues when it came to art and writing, reading too. I was hoping time would solve this. That getting the adrenal insufficiency dealt with, and the ADHD treated would result in this, just, going away. Because why would all this shit hit at once, you know? But it hasn’t been fixed. It’s actually gotten worse in some ways.
I guess the basic explanation is my eyes are fucked. It’s a condition called exotropia, where both my eyes are turning out toward the sides of my head. It’s like being cross-eyed, but in a reverse, lizard-esque version. There is no cure, no surgery option offered (and there’s a lot of mixed info on if surgery actually helps), no thing to pinpoint and resolve that will then fix this. I had hoped — and hope is such a fucked concept when I think of it — but I had hoped that it was the cysts in my pituitary putting pressure on the optic nerve because, hey, that could be something solved. But no. This is just genetics. I hit 40 and my eyes expired.
It’s not completely new — I was in an eyepatch as a kid — but it has progressed into something worse than what they thoughts was a lazy eye back then. My first true understanding of the symptoms was about a year and a half ago when I went in to get my eyes checked because 2 dimensional objects were looking 3 dimensional with certain colors floating above the surface. I was getting clear blind spots in my vision, and weird panic attacks in the car when driving and as a passenger. My brain couldn’t track the movement of the vehicles properly, and for whatever reason it was triggering anxiety and causing overwhelm.
And that’s the root of the issue here: this eye thing isn’t just messing with my vision; it’s fucking up my executive functioning, exasperating the ADHD. Because my brain is struggling to process the data coming in from my eyes, it’s failing to record things into memories at the same time, failing to work at a speed of thought I’m used to, failing to focus on tasks, etc.
There are some treatments I just started that have helped. Eye drops, closing my eyes for half a minute throughout the day, gentle washing of the eyes, using a humidifier. I take migraine preventive meds every morning — because the eye strain leads to migraines that can last for days otherwise. I wear prism lenses that help focus my eyes forward even if they’re looking sideways. I need to get a proper set of screen glasses that are basically like reading glasses, making my prescription slightly lower to help with eye strain. When I first clipped a pair of reading glasses over my glasses, I started to cry. It was such a relief, almost like every muscle in my face relaxing for the first time.
I’ve currently been experimenting a lot with my environment, altering the color and intensity of the lights, painting and moving things around to make my room less visually cluttered. Because I struggle to visually process with my eyes going in different directions, too many things in my field of vision can lead to overwhelm, and from that overwhelm comes all the executive dysfunctions. And it doesn’t take much — I might not even notice it as it’s happening, such as the angle of light creating a glare on my glasses — but the consequences are pretty intense. Even with the migraine preventative routine, the pain still starts up, nausea and photo-sensitivity hits, the eyes grow tired super quick, and I can lose the day.
To make things pretty much shit, screens cause an extreme amount of eyestrain for me. The color of the light directed at my eyes, the brightness, movement, any flashing of images, slowing of blinking. I currently can’t see my cursor as I type this — chasing it to edit is maddening and causes pain. I actually wrote this on the 1st, and then it took 3 days to be able to try again, with me first changing the fonts, colors, and font size of the writing app just to make it easier — but they do help. There are things to help, even if it can’t solve the problem.
The blunt reality is, I spend a lot of my time with my eyes not focusing on anything. I didn’t know it — my normal has been to have this condition be less intense and to just end up in a horrible mood and be exhausted up until now. I used to get a lot of migraines, but I had no idea of the connection to my eyes, to the digital art, to the writing/editing. I have somehow managed to see the world around the edges of my vision most years and not notice. It’s only when I’m asked to truly focus — like on a computer screen when typing or making art — that my eyes are moving as directed, focusing on detail, and it fucking hurts.
So, that’s where I am right now. I’ve basically finished the reference database — it’s empty of data, because I’m going to have to read my old stories to be able to fill it in, and reading has been misery for years now — but it’s mostly complete. I feel so much better physically and energetically since getting the allergies and adrenal insufficiency treated. My anxiety is damn near gone. I can join the world again — not at night; I’m painfully photosensitive in the dark and with blue/intense light. Now it’s just facing this one giant, life defining thing and trying to find a way to say fuck you to it so that I can be creative again.
I saw a neuropthomologist only a month ago, and kind of had to shut a lot of things down to get through the holidays. Even though I’ve been dealing with the condition for a long time now, I feel as though it’s all new now that I’ve gotten the answer. I had hope before then. Fuck, I had hope after, thinking if I just didn’t strain my eyes, I’d be able to go back to doing my thing. I left that office with so many tools to help my eyes. Then I tried to make some computer art for the holiday after a few weeks of following the eye treatment protocol, and the pain I went through for a simple line art — still haven’t finished the damn thing — was so intense, lasting days after, I was just crushed by it all. It was only minutes looking at that screen before the pain started. I’m probably never going to be able to make another book cover again…
And that’s absolutely heartbreaking in a way I can’t fully go into right now. Because before I was a writer, I was an artist. Digital art was the most affordable, ease of use route to go, and I miss it so much. If I had known about the condition back when I stopped making art, maybe this would have been easier. Back when suddenly I couldn’t handle the bad mood I would always end up in, the headaches, the tension in all my muscles while making art. When I just couldn’t be interested in making it anymore, aka, I couldn’t focus on the task… maybe I would have seen how it was the same with how I stopped reading years before then after being a reader for the majority of my life. My brother has ADHD and he can still read, but I just assumed my ADHD kept me from focusing on reading. Nope, it’s the eyes turning.
But would knowing have helped? Or would I have just felt like all the things I loved were being stolen away starting in my teens? I got to believe that I was just bored by the stuff I used to love, that I was chasing novelty. I didn’t understand that novelty was the only way to help me override the way my eyes were glitching out. I needed something to drive me into the struggle of seeing; I needed a new challenge to stay with the pain.
And really, I don’t know any other way after so long.
So, fuck it. This is the one life I’ve got. There is so much shit I’ve never chosen for myself that I’ve had to deal with. I would much rather deal with the consequences of the things I do choose for myself, such as to write even with fucked up eyes. So I’m problem solving, as I do, experimenting, and just letting my inner rhino blindly push forward no matter the mess I make.
My eyes are fucked whether I use them or not; doing the thing isn’t going to make them worse. It’s just going to hurt and turn me into a grumpy ass with a migraine most days. Fine. There are so many people out there who hate their jobs, and feel like shit as a result. I love my job and if I feel like shit, that’s just part of being a person with fucked up eyes who works.
Balancing life with creativity just isn’t something that comes naturally to me. Maybe, in some twisted way, this eye thing will force me to learn. I’ll have to take breaks. Sure as fuck can’t do this for hours upon hours a day like I used to. I’ll have to work with the speech to text software. I’ll definitely have to invest in an editor if I ever want to publish again; I can’t do that sort of eye strain to myself. Editing is hell — editing this newsletter is hell, and as hard as I try, I know I’m fucking it up and getting too tired to care. But it’s a newsletter. Expectations are far lower. If I have weird headers every few paragraphs to help my eyes organize data, no one will call me out on it the same way as if I tried that when writing a novel.
Really, I have nothing left to wait on; I got my answers as to what’s been happening to me. It’s time to get back to creating. I need to finish painting my room and hiding any visual clutter. I have to get proper glasses for screen work, but the clip ons are enough to get started. And as I go forward, I’ll be adapting, looking for the right lighting, timing, computer set up, etc, to allow me to write with as little pain as possible.
But really, I need to break the habit of the last 3 years where I fail and give up whenever I’ve tried to sit down and write. I have my answer, I understand why it’s not easy, and I need to accept and push through to get a win. It’s partially why I’ve been arting again. Every win matters, even if when my mindset is low, I just see the pile of things I can’t finish. But just because art is hard, doesn’t mean I can’t art. Just because the screen is impossible to work with doesn’t mean I can’t sculpt. I just sanded and varnished a tabletop yesterday and installed it as a new desk — seeing with my hands, working in space helps. With the right lighting in my room, I can paint, even if it’s not close to the same as my digital art. It’s art in a different form.
I think, starting out, I might spend some time on an easier story, something that doesn’t require me to remember a lot to move forward right now. Reading through hundreds of thousands of words to catch up in Demon Bonded or PATB might just break me if it’s where I start after all this time.
Like, it’s been years, and shit as I want to admit it, I don’t know if I can do this. Writing used to be my escape from the pain happening around me. Now I’m… what? Choosing pain to be able to write? That’s the blunt fucking reality of it. This isn’t actually ever going to get better. If creativity wasn’t a part of who I am at an essential level, rationally I would never choose this. Rationally, this is a self destructive path where I should instead be looking to accept my limits and live a different life. But this is who I am, and is the only way I can truly be fulfilled, so, yeah. It is what it is.
I’m probably not going to talk about it much going forward. Maybe if I find something that really helps, I’ll share the good news. But this is going to be my default. It’s been my default the last 18 months, and I’ve suffered every damn time I tried to do basic shit with my eyes. (I currently feel like my left eye, left top teeth, and right temple are twisting in my skull just from trying to navigate this webpage to do a final edit and post this.) I don’t want to talk about it. I don’t want to think about it. It has to become background noise, otherwise that feeling of fragility is going to win. I can either be resolved, or I can feel victimized; I can’t be both, and only one option allows me to continue to create the stories I love.
A Fresh Leap
I self published my first story back in November of 2015. I had no idea what it would mean for me, what this writing thing would become for me. Hope. Self empowerment. Connection. It became a part of my identity, and I wasn’t prepared to deal with losing it so suddenly after the mold hit in 2019. Writing has been my lifeline through an intense ride of chronic illness, and even as I know that treating the ADHD, adrenal insufficiency, and allergies has solved the chronic fatigue and pain, to think that I could still lose that lifeline after solving so many problems is just… the worst.
I have been waiting so patiently, trying to do things right, trying to make sure I don’t fuck up everything I’ve built. But that’s also a big problem with me; my stupid brain thinks there’s a “right” way to do things. Such madness we embrace every time our thoughts feel like universal laws. So I’m here in 2023 to fuck it up — to take a chance just like I did in 2015, and hope for the best. I had no regrets then. That leap into the unknown brought me everything. I have no reason to believe it will be any different this time. There’s always so much more to gain than lose.
I hope through the good and bad of last year, you’ve found something that is driving you forward. I guess I’m a grow towards the sun type of person, even when feeling like shit is so much easier. It makes a difference — it brings change when things are unbearable if they stay the same. It’s good to shake off the stagnation and create a new path to follow. So here’s to a new year with new paths, new hopes and joys, even if they might not look like what we expect. It’s still joy.
Happy New Year, peeps, and I hope life is kind. And if it’s not, I hope you can still find kindness to direct within and without. Peace.