Author Archive:

April 7

Disability visibility and self ableism

So, this might not be of much interest to those who are just here to read, but it’s something of importance to me because it relates to who I am as a writer. Especially during these last 6 years of illness.

I was recently diagnosed with ADHD and autism, but before that diagnosis was 6 years of torment, and before that a lifetime of PTSD. You’re only seeing this website because 6 years ago I became so sick and bedbound, I decided to start my own business and self publish. I have been ill this entire time — but my skills as a writer have fluctuated greatly, seeing these sharp declines and improvements. This, on learning about my autism, now makes sense.

It wasn’t brain damage and repair; instead these language fluctuations are associated with autistic burnout. Now, the allergies and dopamine drops I was experiencing aren’t necessarily autistic burnout, so much as because I’m autistic, stress on my body can lead to certain symptoms. So having a chronic illness such as being allergic to mold and unable to handle the scents of certain things can result in autistic burnout.

Why is this important? I have psychologically kicked my ass for years now, waiting for my ‘brain to come back’ so that I can allow myself to write. As a result, I internalized my ability to write as part of my self worth, internalizing this very normal part of my existence — the part where stress breaks me and my brain loses language skills for a period time — and saw it as a character flaw, a moral failing, failing at being a person, instead of part of who I am. This vicious, cruel, internal bullshit I spew at myself is ableism. Instead of accepting myself for who I am, I was being an asshole to myself — not making anything better, might I add — and just being miserable.

This is also connected to the perfectionist problem I have. Because I’m waiting to be ‘perfect’ before I allow myself to write. Aka, I am the biggest dick to myself for nonsensical reasons to protect myself from what I saw as inevitable failure. What failure? Who the fuck knows. I started a business sicker than I have been in my entire life; I have no clue why I thought I could fail when at this place. But I managed to get a little bit better, and I saw any return to ‘the worst’ as failure. Fun.

I am now aware of this, and working on it. Which is why I’m also writing again. And this will be a process, because I’m still angry with myself that my writing is not at a level or ease that I know it could be, and therefore my brain has decided it *should* be. But whatever, until I get a therapist, this is where I’m at on this topic. I need to write when my brain will let me write, even if it’s total shit, because if I don’t, I’m judging myself for this very normal autistic trait I have of losing language skills when I’m ill. I don’t get to do that to myself — I’m bad enough without being that level of hateful over something I have no actual control over. Autism is me. That’s it. Time to fucking love it instead of this knee jerk hate fest.

If I were a scientist–which I am not, but my brain would like to be one once it grows up >_> — I would love to point out all the correlations I have found with autistic burnout and low dopamine. These loss of language skills are also connected to low dopamine. Stress of any kind is connected to inflammation, and chronic stress lowers dopamine, leading to cognition, memory, motivation, emotional regulation and impulse control losses. My multiple chemical sensitivity could be just as easily explained as how my brain processes scent because of autism, leading to what feels like screaming in my head, and pain through my entire face over certain scents. The fact that I become more ‘neurotic’ — which is really hyper systematizing — when I am ill, is an autistic trait growing more extreme in correlation to inflammation. My agitated tics show up during sensory overload and illness — inflammation exacerbates autism, and potentially it is that drop in dopamine which is the trigger.

I have not found anything online on how to cure/treat autistic burnout outside of ‘give it time,’ but I suspect if they instead started helping to improve dopamine levels and support adrenals, autistic burnout would not disrupt the lives of so many autistics, disruptions that can last for years for some.

This shit needs to be studied, but I am not a scientist. I’m just someone trying to crawl back into my life after so many years of exhaustion and illness. I am also someone who is trying to come to terms with my disability instead of ignoring it, and only showing up on my ‘good’ days, which have been so damn few that I haven’t been showing up at all for months at a time. I need to deal with this and accept my situation. I designed and built a fucking clean room to overcome all these immune problems and multiple chemical sensitivity, and for some reason I thought I could just pretend none of it even happened; I’m living in a bubble pretending I’m not disabled, and no, that’s not dealing with anything.

I’m trying, babes. I am fallible and broken and I try every day with subpar results, but I’m still trying. I only like to be seen when I don’t have to struggle to do the most basic of things, but that just leads to complete isolation and this illusion of how life is for someone like me who is disabled. They talk about disability visibility, but honestly, if I keep hiding away, I become the reason I’m erased in this really fucked up, sociopathic world that only wants to show the most beautiful, idyllic, abled among us. I have never lived in that lie of a world — I have never wanted to — but for some reason I still managed to contribute to the illusion by not showing up when shit gets so damn difficult.

So here I am. Tired. All the time I am tired and I don’t like to talk about it. But I’m still here.

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March 30

Unraveling the number cage

So you may notice a lot of numbers disappearing from the chapters/events/scenes to be replaced by short titles. Maybe it’s just me having too much time on my hands waiting for ADHD treatment… but I’ve been thinking about the things that trip me up as a writer since starting the subscription site.

It wasn’t something I actually planned to do, write while being observed. I was used to finishing a book then sharing it. I didn’t think it would be difficult — all I do is write at this point. But I realized in the middle of writing Hellcat, having done about, oh, three extremely different drafts of that book until I got to the end, changing it so many times on the site while readers watched it transform, that numbering things made me feel trapped. Like, I had to make a scene 5ab at one point—and don’t get me started about the mess of the PATB serial as I tear through the rough drafts building the completed form like a tornado—and it just felt dumb and annoying because suddenly nothing was the right number when I added scenes in the middle, and I’ve been using ??? for certain scene numbers just to claim this isn’t definitive, the number might not be this, don’t hold me to this! XD

It’s a mess. I write in drafts, and I change shit around, a lot, which is totally normal (things do not automatically appear in their final form on the page; it’s a process that requires the initial ideas to then spark the later ideas), yet I’m so stuck on patterns and systems—and to be clear, I’m not being glib about this being a disruptive thing. It seems quite brilliant to be able to find any pattern in a puzzle or sequence—once aced a PSAT of analogies not knowing a single word in front of me just based on pattern recognition. My brain zeroes in on this shit, and it all seems fine until you realize there is no pattern and your brain just assumes everyday things means something and that patterns must be found and created. My brain gets stuck on pointless labeling structure—it’s so fucking dumb.

It’s all in my head. I’m fucking neurotic. A part of me loved the idea of these really neat, simple number systems (the balance of the same pattern on a screen to scroll through is just so lovely to the eye), which is why I switched to them in the first place. And then here I am realizing I don’t feel like I’m ALLOWED to change things around because I’ll mess up the stupid system I made up in the first place! XD Oh, and if I do it for one story, everything I make has to have the same fucking system—there is no half-assing with this brain of mine. All or nothing.

Do not have my brain. Seriously, no one should have to deal with this madness. @[email protected] Although, this could be a part of autism—I have autism, recently found out when I got the ADHD dx. So definitely have this type of brain, just don’t let it rule you. Avoid the triggers that turn brilliance into tormenting dumb fuckery. Otherwise, it’s just this damn cage of nonsensical rules that pop up, something that writing in general has a lot of minefields. Grammar nazis are dangerous to a brain like mine, this insistence that something like the language we made up must be followed to precision (an elitist, ableist, classist claim, btw) when language is an evolving, ever changing medium that now includes n00b, c0mpu732 50c141 14n9u4935, and emojis ??? as normal forms of communication. Like, fuck my auto correct that used to help me and now just gaslights my spelling choices.

So, yeah, anyways, getting rid of numbers when it comes to scenes and such. The final, final books will have numbered chapters, but until that point—for my own damn sanity—I need to not use numbers. So of course now I’m just fucking around naming all my scenes that used to have numbers, still seeming mad as fuck about everything as I obsess on this part. The whole point of this is to be less neurotic about shit, I swear. It just doesn’t feel like it during this part of the process… >_>

But it’s important in its own way. It’s like coming at things sideways, dragging me into thinking about writing even as my brain struggles to focus. The fucking thing can focus on numbers, on patterns, on coding (fucking hate coding, just to be clear, even when obsessing over it) but it is still struggling to translate ideas of plots into scenes.

Soon. 2 weeks and I should have my first attempt at seeing which ADHD med is going to work for me. I’m already dreading the possibility that the first one won’t work—this has felt like the longest damn wait to get help for ADHD, and everything that slows it down is just unbearable. But whatever. I can’t function without treatment, so I don’t have a choice. Gotta wait it out.

Oh, but binge watching the The Great British Baking Show during this long ass wait. Some good is coming from this all. XD

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I’m Back! ? With ADHD. ?

Hey peeps

It has been a super long time. I never actually wanted it to go this long between newsletters, but the topic of this newsletter is basically also the explanation of why it took this long: ADHD. And with this topic comes a lot of emotions that need to be processed, and a lot of research I had to take on where I needed to understand exactly what it all meant. I can’t even claim that I am past this process, only that today I feel in a good enough place to be able to talk about it and face these really complicated feelings of vulnerability that come with it.

I’ve never been one to hide what I’m going through, or even just hide facets of myself. That’s not really who I am on any level. But I think partially that comes from this place of being happy with who I am; I’m proud of the things I’ve accomplished and overcome and how I’ve grown to be a better person as a result. These are not feelings that I remotely associate with learning that the struggles of my brain for so many years has to do with ADHD.

I’ve read a lot of people who are in a very positive mindset about it, are likely much further into their journey of processing their ADHD, and they talk about it as a gift as they focus on all the things they can do as a result. I am not there. Not remotely. I am angry with my brain for not working the way I want it to, and I’m angry with myself for not being able to make it work the way I want it to. I have lost so much time that I could have been putting toward writing or making art or building my business or just anything — living my life! — all because dopamine and norepinephrine aren’t getting into the exact parts of the brain they need to get into, resulting in these life disruptive symptoms.
 

for starters, my brain wasn’t working in the cleanroom…

So, I came to learn about my ADHD in a somewhat roundabout way. It was a couple of elements that honestly were built on a lifetime of how the fuck did I miss this. When I first realized I had a huge problem was actually this year after I completed building the cleanroom and I was no longer being bombarded with allergens. I was seeing huge improvements in so much of my health, but something was seriously wrong. I couldn’t focus or remember, I couldn’t keep my mind still on a subject long enough to pin it down. And when it came to writing, I couldn’t load the information in my brain of the books I was working on long enough to then take that information and creatively move forward into the story. My working memory was failing spectacularly, and I had no idea why.

I thought it was brain damage from the last mold attack, but I couldn’t understand it because my brain seemed to be working better during the time of mold hitting it compared to when now I was free of all allergens. I thought maybe there was a leak in the cleanroom or something, where allergens were still getting in — something I missed. But no. So I decided to deal with it, the way I always do, and problem solve and find a solution. The first thing I needed to do was figure out how to do basic tasks in my life. It took me hours to start my day, hours, and not just because I was fatigued all the time but also because I couldn’t remember to do simple shit. Couldn’t remember to take my meds or my supplements. Couldn’t remember to eat, never mind make food. Couldn’t remember to wash my face, or brush my teeth, or water the plants, or to get dressed, or to clean up around the house.

I ended up getting a smartwatch and set up all these notifications to remind me to do basic things. It worked for a bit, and then it didn’t work at all because I started to ignore the notifications. This thing that I literally set up to remind me to do things, my brain was now actively ignoring, and I couldn’t figure out why. So then I used these dry erase notecards and created tasks which I set up around my room as a visual reminder, because visuals were working for me as long as they were in my space. I couldn’t remember to look at my phone, or pay attention to my watch, but if this big card was right in front of my face I could remember to look and focus on it. But that wasn’t working much until I realized I needed to start writing down the times I did my tasks, to help me make time real to me. Because it was just slipping by. My brain wasn’t recording the minutes, and life/hours/days were just slipping by with me not getting basic shit done.

While struggling with this and attempting to create a structure that I could turn into a habit to just do basic things during the day, I was also looking for supplements to help. Brain boosters mostly, omega oils, neuron growers as I feared that this was some level of brain damage, and supplements to help with focus. I didn’t really have a name for anything that I was dealing with at the moment, ADHD wasn’t even on my radar, but I stumbled across a supplement that was used by individuals with ADHD who were trying to naturally deal with their ADHD symptoms after the stigmatization of their medication. The one I tried was specifically for focus and attention, and wasn’t really a supplement but a prescription drug in other countries but available in the US as a supplement. It seemed a little sketchy, but I was desperate, so I tried it — and it worked.
 

a little pill called aniracetam

It was like a light turned on my brain again, and I could write. Not only could I write, I did write; that was when I wrote the first two scenes of Demon Bonded Apprentices. And I thought this is it, this is the solution. I’ll just take this drug for the rest of my life, and my brain will work, and I’ll be able to write again. It had a very short half-life, which required three doses a day, and it was expensive, but it was still my answer and I was ecstatic.

Except this drug didn’t just do what it was supposed to do, it also impacted my serotonin levels. For whatever reason, this is not an aspect of my neurochemistry that can be raised without severe agitation and depression. SSRIs are extremely dangerous to me, and this particular focus drug didn’t just raise dopamine and norepinephrine in the brain, but also serotonin, making it unusable for me.

So the light in my brain turned off again. And my desperation and depression grew. I’d had the answer, but the side effects were too dangerous to pursue. And I couldn’t find anything else like it. I could learn enough about the drug to realize it was raising dopamine in the brain, but that was it. Then I came across a random YouTube video about executive function disorders connected to ADHD, and it all clicked into place.


 

executive dysfunction disorder courtesy of ADHD

In the video were explanations of what I was already doing to function in my life by creating the visual cues of the notecards around me to create a structure that I could rely on to remember to do things. As well as the focus on making time concrete through timers and writing it down to check in. The more I learned about what executive functions were, and what disorders in these functions look like, it was clear to me that this was exactly what I was struggling with. So I had found the names for the problems finally, and I had found the cure in regards to the need to get dopamine and norepinephrine into a certain part of my brain along with positive habits, and I also had a name for this condition, which was ADHD.
 

ADHD is highly heritable

The funny thing is, if it hadn’t been for me finding this video linking the very things I was doing to executive function disorders connected to ADHD, I wouldn’t have believed it. Because my twin brother has ADHD, and our behavior has never been the same. He was a hyperactive child, and I was not — well, I wasn’t hyperactive around other people. It’s apparently rather common for young women to repress hyperactivity as they follow social cues from the gender role they are placed in, while young men are not given those same social cues. And I also learned that ADHD doesn’t always present with hyperactivity. That ADHD can be overlooked in intelligent people because they’re very good at getting around the symptoms of their illness to a point. And it’s only once they reach the level where they can’t fake it anymore, that it all falls apart.

So how was I faking it? Well for one, I was writing term papers overnight and getting As on them. As long as I could get the work done, school wouldn’t notice HOW that was happening. And when I couldn’t get things done and school did notice, it always seemed to come back to the difficult childhood I’d had when in foster care. I wasn’t being held to the standards of my potential, which is why it was missed that my capabilities were limited in ways that matched the pattern of ADHD.

And honestly, being diagnosed at the same time as my brother when we were kids probably wouldn’t have done much. Our adoptive parents didn’t see his ADHD as something that should be medicated — our mom was afraid of the medication. And as my twin grew into adulthood, wondering why he couldn’t seem to feel or want things, he couldn’t motivate himself, he couldn’t focus on things outside of his hyperfocus of reading or video games, couldn’t seem to pull himself out of the depression that had followed him for so long, he never once connected it to his ADHD. And it’s only now, as I watched my emotions turn off, my motivation turn off, my spark for life and novelty and joy just disappear as dopamine failed to reach the correct part of my brain, that I can fully understand why everything was so much harder for him. Your brain is working against you, and everything is so much more effort than it should be, and eventually you just want to give in and stop trying.
 

the allergy link

There’s a bit of a dark irony in all this, as I came to understand why my symptoms were getting worse instead of better now that I was living in the cleanroom. The allergies were helping me focus. The overstimulation of my immune system as it was pushed into fight or flight mode every time I took a breath, was pushing my adrenals to flood chemicals which helped to transport dopamine into the brain. I grew up in a moldy basement from the years of 5 to 27, and when I left that house my immune system was set to critical as it had over targeted practically everything because of that long-term mold exposure. So even as my body was overreacting to everything and gaining huge amounts of inflammation and having these histamine responses that were draining dopamine from other parts of my body to give me Parkinson’s symptoms, the adrenals were using the stress response to get dopamine into the brain enough to get my executive functions to work.

This is why I didn’t become a writer until I was bed bound and sick from all these allergies. The only way I could overcome my ADHD enough to write books was by being in a body that was so overwhelmed and in a state of stress that it couldn’t move anymore. Before that point I could never stay/think still long enough to be a writer until in a body that was basically dying. It was the most horrifying realization, one that truly made me wonder if there would even be a future for me if ADHD treatment didn’t work.

I am currently in the middle of a 1 to 2 month long assessment by a psychologist who will decide if I have ADHD or not. At the same time I’m helping my brother get his health insurance finalized so that he too can start this process, get the assessment he needs, and finally get medication to treat what has completely interrupted his life. I am full of doubts and uncertainty, a lot of fear that at the end of this assessment this doctor will fail to see what is so clear to me after just the minimal amount of research — and I never stop at minimal when it comes to research. I’m scared that the medication won’t work, or that it’ll have a frustrating side effect like the other drug I tried that raised my serotonin levels. I’m scared of a lot of things because I see not just my life and future hanging on this diagnosis and getting access to appropriate treatment, but also a fair amount of my identity as a writer.

Writing was the first thing I’d ever been able to succeed at. I’ve been good at things before, but never consistent at them. Of course, now I see why — how ADHD has impacted so many facets of my life is almost impossible to count now that I can see it clearly. But that doesn’t mean these frustrations with myself, these feelings of failure to not do what I know I can do if only that damn switch will flip in my brain will suddenly evaporate just because I know about ADHD now. My nervous system still needs to believe it, and that is a much longer journey of processing.
 

estrogen is required to produce and transport dopamine to the brain

I’ve had one really amazing twist in all this, which was trying estrogen supplementation. Apparently as women age, their ADHD becomes more prominent as their estrogen levels lower. Hyperactivity can increase if there is an imbalance and testosterone is higher than estrogen, as well. I knew I was in perimenopause for some time now, at least for the last five years, but I didn’t think it was something that would be addressed until menopause itself. But after listening to a podcast directed at women with ADHD, I bought an OTC natural estrogen replacement cream from Amazon, and the changes have been amazing.

Not for my focus — I am possibly more distracted than before. But my working memory, my energy levels, my mood, and spark for life have all returned. I get up every morning feeling happy, and do all the things that I need to do, and I’m more aware of time and how it passes. And if things get a little complicated, I know how to just add in a visual cue to remind me of what to do that day, or set a timer or reminder for future events to keep me on track. And when my day is done I actually feel tired, and I can fall asleep for a change, and then actually sleep through the night. My back pain is mostly completely gone now. My quality of life has improved, even if certain aspects are still a struggle such as writing. That has been amazing, and I’m really grateful for this discovery.

I wish I didn’t live in this place of frustration with myself, and I know it’s going to be a while — maybe a lifetime to stop looking at this like some ridiculous failure. When I look back at the times I could write, I see the mad dash it was. The last book I wrote was in 10 days; for all the times I was telling myself that I could do this, I was missing the stress and anxiety that was fueling me as I ran for some arbitrary deadline just to be able to function. I’m hoping as I move forward that I will have a better relationship with myself about this. It’s funny, because I know I did this with PTSD; I learned to love myself after facing terrible trauma and the very natural survival instincts we have. I don’t know why it’s so hard to not feel betrayed by my brain, but that’s where I am right now. Even as I know that I have no control in this, I still blame myself for not having enough willpower to somehow overcome what is literally a structural disorder in the brain itself.
 

I hope you’re all dealing okay during this long pandemic, and if you’re in the US, the shitshow of watching a bunch of fascists try to take over the Capitol because half of them can’t understand that easily debunked conspiracy theories aren’t founded in reality. >_> Self care is extra important during stressful times, and I hope you’re all remembering to take care of yourself.

 

resources

If you find yourself interested in this and want to nerd out, here are some playlist — because reading is really difficult for me, even though I’m a writer, and videos/audio help:

November 3

The Perfectionist’s Web

Okay, so all the audiobook stuff of the moment is finally done. Yes, there are still the fanfics, but I’m leaving those to be recorded specifically for the weekends. I’m not good at dividing my time during a day, so I would rather ensure I focus on my writing on weekdays and then give the final recording stuff attention on the weekends.

I want to slice through these waiting stories and get shit done. All of them. Just knock them out, one by one, scene by scene. I’ve been doing a lot to deal with the perfectionist side of me that sprung up once my brain started coming back after the mold. It’s fear, vulnerability, identity all mixed up in if I’m choosing the ‘right’ words, the ‘right’ plot, etc, and it’s been freezing me in this rather painful web. I think I’ve broken through, but I imagine this will be a work in progress, overcoming the psychological damage that came with having my entire life swallowed up by illness for so long and just feeling unanchored and unable to find myself in it all.

I plan to show up every day to have new stuff written, even if it’s just a few paragraphs. You can’t face writer’s block if you don’t show up. I will record each scene only once it’s fully written… And yeah, think that’s it. I’ve been feeling well, trying an experiment with CBD oil that’s been helping my health a lot. My brain is feeling better, my memory almost where it should be. And believe me, I fucking need all the help I can get as I wait who knows how many months long to see if the fascist orange dickhead is voted out, and if the electoral college will honor those votes.

But fuck that shit– I refuse to waste my energy on it. Let’s get some awesome stories written already! ♥

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August 19

Audiobooks and Perfectionism

I think I’ve finally reached the point where I can just post audio without it being perfect. Sometimes I have to trick my brain into shit–if you lived in my head, you’d understand. I need to call it a ‘draft’ and ensure I mark it accordingly, and if I do that, I will be able to record and put the rest of the audiobooks up–possibly every single one of them–this week.

A thing happened today, one of those wake up things in life. I found myself sleeping on the cleanroom floor as allergies once again took over the main living space so completely, my heart rate wouldn’t return to normal until I locked myself in the cleanroom. I don’t think I’m waiting for ‘perfect’ when I’m waiting for livable, but the reality is, most of the shit I’ve done when it comes to writing and art, for that matter, was while living in mold under extreme stress as my brain was overrun with neurotoxins and my dopamine system was breaking down. I have done nothing while life has been in any sense of the word perfect, and expecting that I’m somehow going to get more things done if only my existence could be momentarily comfortable just isn’t really realistic.

This body is broken–it overreacts to most every thing now. The dream of affording a house that isn’t full of mold is pretty low, unless I want to magically have a fuck ton of cash and move completely away from the state I grew up in to find some low humidity either freezing cold or boiling hot area to live where mold is less likely to grow. I built the cleanroom understanding that; sometimes you have to make your space because it’s just not going to be handed to you. The stars do not align– not in shitshow 2020.

This is still going to be a struggle for me–not the audiobooks, I can already feel I’m past that. I’ve given myself a bridge to cross with the idea of making drafts that will eventually be edited up nicely, but until then, it’s something–anything–to improve accessibility for all readers. No, perfectionism–the dream of being allowed to have my brain when I’m writing certain stories so they can be the best they can be. That’s going to be a lot harder to overcome. But it’s my job as a human being who needs to accept the limits my body and environment place on me to do the work and deal with it as it strikes.

So, yeah, expect a lot of audiobooks being posted this week and the next. Each chapter will be marked clearly visibly as either draft or not– if there’s music at the beginning, it’s a completed edited audio chapter, if not, then it’s a draft. Simple. I’ll be rerecording some of the original audiobooks too where I was just learning the system and fiddled with things that conceptually seemed really fucking cool, but I did not have the skill/knowledge to pull off–looking at you, I’ll Tell with your weird voice mods.

Hope you’re all doing well. Depending on if that solar flare hits tomorrow, this shit might all be moot anyways. 😉

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