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Mental Health is a Universal Right

That’s the theme of this year’s World Mental Health Awareness Day. As much as mental health tends to be referred to as diagnosis and something that comes from within, I’m someone who has a combination of situations that reveals it’s more complicated, and absolutely universal. So, while the world is on fire once again, I want to talk about external factors of mental health.

We didn’t evolve to survive the modern world. Our technology has surpassed our evolutionary capabilities. And with the ability to industrialize and “scale up” every model we create, we not only didn’t evolve to survive this current world, no one is designing it. There are no intentions beyond a few as to how they want the world to be (usually driven by how much money and influence they want to gain) and the many — the majority — aren’t represented in that vision. There is no grand plan, no puzzle pieces being fit together to craft the ideal picture. It’s just humanity doing what it wants, sometimes with limits, sometimes without. And we all have to live with the consequences, just in varying degrees of comfort.

Our civilization is chaos, and we didn’t evolve to survive it. But we’re here. Adapting.

Some can turn to the Internet for connection, or television for distraction, while these same elements can bombard through marketing and algorithm to sell people bad mental health so that they will “engage” with “content”. This can change who they are in the world as they’re traumatized by shock and awe experiments news media networks use to ensure the traumatized come back to forever watch for the next attack. Their motivations can be changed as someone stops thinking about personal dreams and instead starts fearing every potential minefield of being an adult responsible for themselves and others in an unstable world while feeling like they have no power. The Internet in the palm of one’s hand means there’s no escape if you’re addicted to video games, or raging about topics online, or to checking your finances or news, catastrophizing about fears, or needing external validation as communities deteriorate while people spend most of their hours at work, not at home or investing in their neighborhoods.

Humanity didn’t evolve to the culture of stress it is contributing to as every real horror of the globe and imagined potential horror is pumped into their screens 24-7. Our empathy mirror is forced to go through the motions again and again, only ever seeing the horrors and never the good, until some just burn out completely and they’re changed. Hardened, colder, yet happy to survive… even as happiness feels less.

Our brains weren’t meant to have so many images of vast wealth and success staring back at us from so many screens, like these mansions are just the house over instead of behind gated acres miles away. We weren’t meant to have to decipher what is a visual lie 24-7, an illusion of wealth and stability as influencers sell us a lifestyle they can’t afford while seeking pseudo relationships with the working class to pay for it. When the majority of people live in credit card debt and many paycheck to paycheck, no mirror on their screens is there to let them know they didn’t fail. Poverty isn’t an individual failure; their government chose poverty for many so a few could be ultra rich.

Humanity lacks self awareness of the damage it creates externally and internally, of the norms that we participate in that are damaging. We fail to see our expectations don’t match reality because a false reality has be sold to us from so many, in every direction, and at some point we adopt the lie and only see that as truth. There are so many students left with horrendous debt for an education that slyly failed to inform them that there wasn’t a job waiting for their newly earned skills, and next year there will be more, and more, because out education system wasn’t designed to be a job placement system, no matter how much colleges will claim otherwise to fill their dorms.

We fail to see the value of our time in this existence as we’re taken from home and installed as labor for the profit of one, simply for the right to live. We haven’t evolved to this; we have adapted down to damaging conditions, failing to see the extent of what we’re doing even as the one planet we can survive on falters.

I took out the word “Human” in “Mental Health is a Universal Human Right” because I think it’s important to realize that it’s not just about us. Humanity sees everything through its filter, but in taking over the responsibility of transforming this globe full of diverse life, we have tried to release our accountability, and I think that’s bullshit. I, from a place of very little power, still hold myself accountable for my impact, even if the current way of living doesn’t give me many options on how to change it. And I can do that, because I work on my mental health most days.

It’s my job. I gained tools to do it when I gained enough self awareness to understand that this is my job: taking care of me so that I can be better for everyone in my life. I’m not allowed to catastrophize anymore. Not allowed to feed my fears and put myself down and talk shit about how I can’t be something that I literally cannot be, because I am exactly who I am. Always. Even when it’s different the next moment; that’s the only me I can be in the moment. It’s pretty hard to fuck that up.

We are all exactly as much and as little as we can be in the moment. Self awareness gives us that grace during the chaos. And it’s a lot of chaos out there, especially when you’re staring at a screen being exposed to far more than anyone with the base senses of a human would ever be exposed to without technology.

So, for mental health day (and any day you need a mental health fix), I recommend checking out of screens for a mental health check in. See the world around you. Ground. Feel connected instead of the disconnect sold to us. Find you in the chaos and love. 💕

If you can’t. If you find yourself trying, but your brain fills with all these reasons why you can’t, stop and listen. Write them down and examine those reasons. Some might be very good reasons, and that’s okay. Even if you can’t, you can still start gaining self awareness by just questioning if it’s true. If you really won’t survive turning off the screen for 24 hours. The more self awareness gained, the more you can start to see who is pulling you, and their intentions of how they want to use you on those screens. How you’ve absorbed their message as your own without even realizing it. And how it’s okay to have your own intentions for your time, for your thoughts. It’s okay to be you in your head. The only one judging is you.

I had to go through a lot of PTSD therapy to reach where I am today, and I’m far from amazingly resilient. I just realized that what I was being sold as resilient — being able to hold an entire globe’s problems in my nervous system and cope — was ridiculously unrealistic. We didn’t evolve to be able to do that, so why do we hold ourselves to this standard that the perfect version of ourselves can do that? Nonsense.

Mindfulness is really helpful, just avoid the cults (cuz of course there are cults in the mindfulness sphere.) CBT therapy can also be helpful, but it might not give you as much insight into yourself as just asking those questions and writing down the answers when you feel stuck in a loop, unable to break free from a damaging habit or thought. Self awareness is a relationship with the self, not just an awareness. Understanding is where we start, even as we’re all in a relationship with ourselves, aware or not. The better the relationship, the better our mental health gets because we stop blaming ourselves for things that were never in our control in the first place.

Good luck today, and every day, peeps. ^.^

June 22 2023

Checking In

Just wanted to let you all know I’m still alive and up to creative mischief. The new meds are working, and I’m pretty much back to my old self (whoever that is @_@).

We got a surprise leak in our garbage disposal, water in the basement, and my reactions were… fine. Allergy fine, not mast cells over reacting and making my entire existence miserable. Although I got a big whiff of smoke yesterday evening, and that caused the other reaction, and it was pretty shit for a bit.

It’s such a contrast — one I had no idea was even possible. Because I guess for most people allergies are just, you know, a runny nose and feeling kind of sleepy, a little fuzzy. Not the insanity I’ve gone through all these years. There was a difference, but my ignorance shouldn’t have made those who treat allergies so ignorant, yeah? Like, I was really good at communicating my symptoms, but the medical world just didn’t understand what those symptoms fit into then.

Text based games

Anywho, I’m back to coding up the database, currently looking at the interactive novels and text based game side of things. Because my eyes are so much better, I think I could handle at least fighting with an AI art program for a bit to get art backgrounds for the text based games I want to make. I don’t think they’re sophisticated enough for character art — consistent character art that will look like the same character. But backgrounds? Sure. They’re easy enough to edit if things don’t look quite right.

The main thing is I’m looking for writing that doesn’t ask me to edit extensively the way my current writing does. A script is visually easier for me to handle because of how it’s naturally broken up, as well as far less focused on certain elements of a story, such as building an atmosphere. The imagery can take some of the burden — the whole “a picture says a 1000 words” thing. And it’s not that I don’t enjoy building atmosphere and such, so much as, editing is shit on my eyes still. Editing this is shit on my eyes. Reading glasses might change that, but it’s not happening soon, and that’s okay. I’m looking at options instead of passively waiting.

Coming to terms with my ever changing limits has really pushed me to find smarter solutions to things. Affording reading glasses with prism lenses is a long way off after years of being ill, so I need to get back into this writing thing, accepting these limits and looking for ways to navigate as I am, instead of how I used to be. There’s also just so much life I’m trying to get back to. A decade of illness interrupting — actually, far longer. It’s been since a teen living in my adoptive family’s moldy basement, wondering why it felt like my brain was on fire.

There is very little “stable” that I’ve experienced that I know to get back to. When I look back, it’s PTSD from a traumatic home life, followed by years of foster families, and then recovering when adopted… then becoming ill from this condition and watching my adoptive parents both die, my mom right after I graduated high school, and my dad a handful of years later, most of those years me taking care of him while he had dementia. All those years after that were panic, homeless, working to survive without a degree because I couldn’t take care of a parent and finish college, and there was no safety net once they were gone. Not when this condition was 100% active with no one knowing what it was or how to deal with it (but very good at gaslighting a young person who was doing everything to try and get healthy and stable.)

A new pace to life

My relationship with time has to change. It already has with space — I’m doing well getting the years of exhaustion out of my house, cleaning up the piles that have been waiting to be addressed.

I actually took down the backroom cleanroom this week. I plan on painting it next month — getting a big 5 gallons of paint and tackling the hallway and 2 walls of the kitchen as well. I had done some nice decorating of half the kitchen last year after I had built my art storage cupboards, but the old dingy blue paint on the other walls has been here through a lot of renters. It’s the same paint in some of the closets, revealing it was some version of original before other people came in and painted.

That back room will likely never be my bedroom again, not with the way the air flows in this house, but it can at least be a great space for art storage and painting large canvases. I want to make some tables for the kitchen the way I did for my bedroom, just a simple desk/counter thing that forms an L on one of the corners of the room. It’s such a small space, but the design would give more surface area as well as more walking space compared to the big table we have in there now that takes over everything (even though it’s too small to actually eat in the kitchen.)

Sawdust is absolutely one of the triggers that sets of this condition, the same way smoke is, and ammonia, heat — the summer weather turns me rosy cheeked and straining to breathe. Oh, and I discovered the scent of cedar is a trigger. Fuck well-made furniture for storing clothes, because it is all cedar and kills me. It means getting these supposedly simple projects done isn’t actually that simple. Even if cut to size, I need to sand and seal anything wood that comes into the house, and that means sawdust. And if the sealer is shit, or worn down from cleaning, I have to go through the process again cuz the raw wood does come through and the scent triggers the condition (learned this firsthand with my desk).

But… my reactions are better. They stop now, instead of going on for weeks to months of misery. The meds work, and as long as I don’t become allergic to the meds (something unfortunately very common with MCAS) it should be good. I can’t wait for things to maybe go bad again. This is the time I have now, and there is so much I want to do.

Making time for arting

It’s kinda weird to talk about art on this site. It used to be my thing before the illness knocked me down and I started writing to cope. I went to school for art and music. College was to help me recover from my adoptive mother passing and trying to figure out what I was going to do after spending so much time thinking of her health and aligning everything I did around it. But… there was a lot of mold in the college classrooms. The calculus room and history, in particular, I remember always getting sick…

But yeah, art held a lot of healing for me, especially therapeutically in regards to PTSD. The same with writing — there are a few ways to hack into the subconscious of the mind without needing to be dreaming, and writing and making art can put you into that trance like state. Something happens in the nervous system while there, and then when you come out of it, not only do you get those benefits, but you have something to show for your efforts that can be shared. A bit of the hero’s journey as you delve into the dark, deep woods of the psyche.

I’ve been playing with UV resin and mixing my own watercolor paints. I always wanted to make my own watercolors, but just never did… Chronic illness makes everything so much harder than it needs to be. It makes you need to do things immediately, or know it will likely never happen, which makes the pace of life even more difficult. Rushing, bursting the little energy you can all at once before the inevitable breaking and crash. It’s a destructive pattern, but it’s required when it’s all you can do. So I’m enjoying relearning what it means to rest instead of being broken, to pace and remember what time actually is, how to experience it, how to experience being in a body not suffering all the damn time.

They’re mostly pearlescent colors. Metallics, and some that have little bits of glitter. It’s kind of a big deal for me, not only because I’m finally making the watercolors (and doing it in a far cheaper way than buying them), but I’m making shiny, sparkly things that just a month ago would have been impossible on my eyes.

I saved a lot of things out of stubbornness. I didn’t think I was going to actually get to this place of getting better, but I refused to give up… And, if I’m being brutally honest, it takes a lot of energy to throw away your dreams when you’re already tired all the time. Most of the art stuff I have stored in the back room is expired, especially paint mediums and such. I’m going to be throwing out a lot still, but now it feels okay because it’s to make room for new. It’s not about holding on, stagnant, but growing into the person I get to finally become after all this.

At some point, my life is just going to be about living it. I won’t be focused on the past because all I had was the past when ill in the moment. I had given up on the future completely, and was doing everything to escape the now of being in an pained, exhausted body. Now there’s room for something else when I look forward.

I don’t know what I’m going to want to write as I grow into who I’m becoming. There are some stories that I need to finish telling. I just don’t know if I want to live in such unhappy moments just to create contrast to the happy ones in some of these stories. Because my writing is so connected to exploring trauma, there’s a bit of a war happening inside me about what’s allowed to change, what needs to be honored, etc. So I’m glad for this pause, for this chance to really look at what I want out of writing now that it’s less about surviving the misery of the past or of chronic illness, and more about creating something new to think about.

It’s time to have fun again with writing. Editing isn’t fun — although developmental draft editing is probably the most fun. You ever stumble across a story someone else has made, or a show, etc, and just want to tweak it into something so much better? That’s developmental draft editing, but it’s with your own work. Where you make a rough draft and poke and prod and tear it to pieces and move things around until you’ve developed the potential instead of what was there.

It’s a great creative process my brain adores. And I think that’s why I like the idea of text based games with multiple paths; you get to lean into that process and reward yourself and the reader/player with all these different, interesting stories born from one set inspiration.

I think that’s probably enough of my rambling for now. How funny to think I didn’t have anything to say, yet here are all the words claiming otherwise.

Starting a Creative Practice

Creative practice: Refilling the Well with Art

As the smoke from the Canadian wildfires fills my neighborhood and little house with pine soaked soot that triggers my condition, I thought it was a really good time to talk about refilling the creative well through a creative practice.

My body would like to hyperfocus on survival right now, even though we are doing a perfectly fine job surviving. The anxiety this condition gifts me in these moments of a flare has a lot of chemical energy. Energy that needs guidance to prevent it from turning into neurosis, catastrophizing, and just generally feeling miserable.

This post is about becoming aware of the relationship we have with our bodies, our psyches, and the environment we’re in to see how that has an impact on our creativity. And why in this place of self-awareness, no matter the circumstances, no matter how far away we might feel from doing the artistic endeavor we have in mind, we are still helping ourselves to create.

So my understanding of creativity has changed a bit with being able to push back a lot of the numbness that comes along with this condition. I’m doing a lot of nervous system focused work (vagus nerve stimulation with a TENs machine), along with calming the immune system and stabalizing the mast cells. With the healing of my nervous system, a lot more sensations connected to emotions and thoughts are turning back on. Creativity is no longer just the logical problem-solving that my brain would like to categorize it as. Creativity is also an exploration of emotions and sensations, and how we feel about the things that come up in our work.

There is a being, not just a brain, in the creativity relationship. And that being needs to feel to be connected to the work it’s making. And that can be really difficult when dealing with chronic illness, where your sensations might be overwhelmed by pain all the time, anxieties, feelings of worthlessness, or hyperfocus to distract from any feelings at all. Chronic illness demands a lot from a being, not just the body. And even though there are many lessons to learn and ways to evolve into a greater version of oneself that never would’ve been available without such an intense catalyst, it can also suffocate the creative process when it’s too much.

Poverty can suffocate the creative process. Poverty and chronic illness tend to go hand-in-hand, both perpetuating the other. When you need your creativity to escape anything, it’s very easy to lose sight of the value of creativity outside of that external goal. It’s hard to remember why you turned to creativity before it became eclipsed by the desperate goal to survive.


Creativity versus the World

When creativity is muddled by one’s environment, the relationship with creativity becomes distorted. Our creativity is a reflection of ourselves, but sometimes it becomes warped into what it’s being asked to be by the problem we’re trying to solve. We start believing that creativity is a thing we do, an entitlement, something that should be able to turn on at a moment’s notice, forever ready. It should never lead us down the wrong path, but only the one we want, quick AF, and that it should automatically deliver us our goals.

You know, like it’s technology, something built to grant us our wishes and work exactly as we demand. We treat creativity like it’s one of the products we make, instead of the source of creation.

When one gets stuck in that dismissive perspective of creativity, you can start getting frustrated when it’s just not working the way you want it to. You can start getting angry that it’s just not delivering. And you can start feeling worthless, because it’s you, isn’t it? You’re the one not delivering. You’re the one not solving all your problems. You’re the one failing, and maybe you’re just not any good at this creative stuff. Real creatives make this look easy, so you can’t actually be a creative. You’re just an imposter.

A defective imposter, at that. (WTF brain? Why do you have to be so mean?)

We are bombarded with messages from people who want to make money by telling us how to feel about our relationship with the creative process. They tell us that the process is easy, and you just need to do these quick tips, buy their book, sign up for their course, invest your time and energy and money into solving your creative deficit. And that if you invest enough, eventually you will be rewarded with the results you want. The results you’ve been promised — the ones all those other creative’s are getting.

Surely, that’s what they did, right? They don’t struggle. Go on Instagram and see all the creative’s who make their work look easy. It can be easy for you too. Just invest in solving your creativity problem.

The thing is, there’s no such thing as a creativity problem. There’s nothing wrong with anyone’s creativity; the problem is in our relationships with ourselves.

Creativity lives within

We forget why our creativity exists. We forget the inner gains as we tunnel vision on the outer goals from creativity. We forget that beings don’t exist to do the same thing every day like machines. And by asking ourselves to do that — no matter the goal — is us asking ourselves to come up with creative solutions to harm ourselves.

We are not characters in video games that get better by leveling up individual stats for hours upon hours a day. There is a whole being that needs to be addressed, that needs to be fueled at all levels, and creativity is connected to that whole being. It’s not like a limb where the stress is felt only if you overwork the joint, or pull a muscle, or break a bone. Creativity lives in our nervous system, in the three main brains in our skull, in our muscle memory, our reflexes, our sensations of the world. It’s in our memories of the past, in our relationships with society, and with being human. Creativity is a part of our psyche, just as much as a part of our logic, and if we are doing things that fail to connect all those relationships properly, creativity can struggle to flow.

Chronic illness turned the question of what I wanted from my body into the immediate, frustrating answer of “I just want it to work”. And of course, the thing I wanted was impossible to have. I didn’t want to accept what I was experiencing. But it’s in acceptance that we remove a lot of the stress of chronic illness.

We already have a world out there refusing to accept that people break, that rest is required, that the demands being placed upon us to be allowed to live, never mind the quality of that life, are not only unrealistic, but damaging. Capitalism is an abusive relationship, and when you start believing the messages being sent to you, basic aging is suddenly a failure.

Creativity isn’t a light switch. It’s a state of being, and it’s only truly accessible when we accept it for what it is instead of trying to distort it into something more convenient. Feeding it requires taking care of all those things that we want to ignore as we focus on our goals. It is more demanding than maintaining a machine, because we are very good at ignoring the very big demands that are placed on us every day, and creativity takes a hit as a result. And if you have chronic illness, and are dealing with financial difficulties, or relationships where you are expected to be at a certain level all the time, no matter what, those stressors compound exponentially.

If you are someone who doesn’t accept. If you’re someone still asleep, thinking that you can force your way out of the situation of life with just a little more breaking of yourself for later gain, you are the problem that is killing your creativity. There’s only so much a being can take.

So how do you repair your relationship with your creativity enough to allow it to flow?

Accepting The Impossible, aka, Mindfulness

It starts with acceptance. Accepting all the shit you don’t want except. Accepting the emotions that you’re running from. It is shit to feel like a failure, and no one wants to feel those feelings for long. But in acceptance of those feelings, is also the acceptance that you weren’t given a choice.

This is life exactly as it is.

Unfair. Painful. Full of extremely unrealistic expectations from a species that is destroying the one planet it can survive on. All these demands are coming from a place of insanity, and internalizing them can only spread that madness further, and break us.

In a place of acceptance is the ability to feel again. It’s the ability to reconnect with your body and your environment. It’s the ability to reconnect your emotions to your thoughts and sensations, and to have a richer experience of being.

It’s about letting go of those expectations and demands that claim you can only do things one way: goal centric. The insistence that you should find a way to be productive while being creative.

The trap of creative productivity

There’s something funny about the concept of productivity, especially in this current world. If one were to think of a production line, productivity would be about making more things people need, faster. What does productivity currently mean when it’s being sold to us by the business self-help gurus? It’s about making money. It’s about making meaningless things, more superficial things, faster, so-called “smarter”, for the end goal of money. Where everything you do turns into a way to make money. Everything. Hey, you could write a song right now for fun… but would it sell?

It’s suffocating. Paralyzing. Until can’t do a fucking thing without having to figure out if you can make a cent off of it at the end, and they want to call that self-help. Talk about psychosis.

It’s not just art though. What do you want to do with your life? What do you want to be when you grow up (or grow older)? Will it make money? Will it be attractive to a mate? Will it make you into a worthy person deserving of love and respect? No, not in this world? Then do the thing that makes money.

Don’t dream. Don’t hope. Don’t wish to be better or to change the world — that’s not going to make money. Don’t BE unless you fit into this form. Settle. Then production line it.

Our environment decides a lot about how we feel about ourselves. It frames everything. And when you are stuck in an abusive environment, be it the ability to blame a bad job, a hurtful person, or dehumanizing societal norms, it is hard to find perspective. You’re in it, and become a product of it.

This isn’t a go live in the woods blog. We have to find balance.

These messages and distortions of us absolutely limit and cripple the creative process. We stop asking ourselves how to create, and instead focus on getting as many products out there as possible. It becomes all about the goal and not the creation. We lose the journey of exploration, the sinking into the psyche and pulling back knowledge, inspiration, emotion, pain, and reflections of being that we can share with others. Connect with others.

I’m not saying you can’t create to make money. I’m not even saying that can’t be the reason you show up every day to create. I’m in no way blind to the capitalistic hellscape I’m forced to participate in. If anything, I am still too connected and distorted by it.

What I am saying is that you cannot turn to that abusive relationship to maintain your creativity. And your creativity will be harmed because YOU will be harmed. There is no way to minimize down a being’s worth, their time, their talents, their reflections of emotions and philosophy into a production line, without inflicting great harm on a person. It is dehumanizing, and creativity cannot flourish in such a two-dimensional space.

Creativity is not a get rich quick scheme. Finding your bliss shouldn’t be one either.

Do not go into the creative field to make money, if you want to remain a creative by the end of it. Oh, we love the lie. We love to say that we can have 2 goals in a business model, the first goal to make money and the second to make the world better, or make the best product, or, I dunno, clean up the environment, etc. It doesn’t matter; the first goal will always take precedent. Always.

This is why businesses exist: to make money. Deluding yourself otherwise is bullshit. When you are participating in the act of making money, what your skills and talents are will never be as important as getting that cash at the end of the day. You will be valued by that cash, your entire sense of self slapped with pricetag of how much you are worth in this endeavor. It is not a community. It is not a lovefest between you and fans. It is a job. One that limits how you present yourself to the world to maintain that job. One that asks you to create things you might not want to create to maintain that job. One that can never truly be a reflection of you as a being, because the purpose of that job is cashflow, not self realization.

Do not turn to your job to become a better person; it cannot facilitate it. Become a better person and bring that to your job.

Or change the goal of your job, and give up trying to compromise. Maybe you’re already independently wealthy and you can do that. Maybe you’re like me, and your creativity won’t flow when you’re trying to compromise with this shit. Wonderful. Otherwise, stop drowning your creative process in a field that doesn’t reward the essence of creativity. If repetition is required to make a buck — if the production line is required for your creativity — you can’t go to work to refill the empty well. It won’t work.

Dedicating space to create

Exploring creativity outside of distorted goals is a good way to remember why one creates, and what creativity provides. Make a practice of it, a play date, a therapy session, a rest, an indulgence. Give yourself permission, and then give yourself time. Fall in love with what you do by doing something else that doesn’t have the same demands and expectations. And do not allow yourself to place demands on your practice of creativity.

What do you need? Not much.

You need a space to create. A physical space, one ideally with a clear schedule free of interruptions. And probably most importantly, you need to show up, ideally with a guilt free conscience and curious to explore.

You do not get to fail. Failure comes from a place of expectation, and creativity cannot be about expectation. It’s about exploration. It’s about feeling the process, and allowing it to be exactly what it is in the moment. Allowing yourself to be exactly who you are in that moment, the frustration, insecurity, boredom, curiosity, seeking, worried about time, lonely, in pain, etc.

You also don’t get to be bad at it. There is no expectation of a result, and therefore no way to judge if you’ve achieved that result or not.

When lost in the creative process, exploring, results meaning nothing. You can throw it out at the end if you want. You can daydream and never write a single word down. Just as long as you experience the process, whole body, and accept it all as it comes.

Creating for creativity’s sake. If you need your creativity to flow, you have to focus on the actual problem. You. You need a reset. You need a place to be, to do, without judgement, without expectation, without the noise and stress the world bombards with. You need a place to be free, so create it.

The creative struggle with my personal environment

I’ve been seeing my creative deficits since getting back into writing. It was much easier to focus on the executive dysfunction’s, partially because in some ways they’re easier to face. They’re also easier to communicate. I can say working memory, or attention span, and people can relate without asking too much from themselves.

It’s harder to communicate well in regards to — I don’t want to call it writer’s block, because it’s not. I could absolutely sit down and write. But I couldn’t feel what I was writing, and feeling is what writing is all about. And every time I would delve deep, and try to find where those feelings have gone, all I could find were feelings about chronic illness, about disability, about poverty, and about the society that has framed these things into abnormals states of being — there are millions of us with chronic illness and disability. Hundreds of millions of people are in extreme poverty, while billions are in societal poverty. It is normal!

But the world defines us into failures. Invisible. No one wants to hear about reality when they’re turning to the computer to escape reality. And the harder it was to feel, to connect with my body and my emotions, the more I internalize those distorted, frankly fucked-up messages that I was the problem. That I was abnormal. That somehow something intrinsic in me had made this the obvious end result, no matter how much I fought to get out of this pit our society keeps dark for those they don’t want to see.

So then my creativity came about in defiance of that. Still not feeling, still not accepting, still running away. Seeking ways to break myself to help escape and feel the other things — the exhaustion and frustration and failures — so I wouldn’t have to feel so broken as a whole.

A part of me saw that as long as I was physically ill, I could understand why I was failing, why I wasn’t being productive enough with my time and therefore wasn’t living up to the distorted capitalistic message. By participating in my self-destruction physically by refusing to rest, by investing all my time and energy — energy I don’t have — into getting out, I was finding a way to emotionally free myself from the abusive messaging bombarded at every single person when it comes to self-worth and how they spend their time.

I just had to keep breaking myself physically, so I wouldn’t have to hold myself up to the standard that was killing me to try to achieve.

Creativity is a sword with as many edges as you can imagine

Our creativity is a gift, that can create a door to these psychological cages we participate in building. We might have never come up with the initial message, and we certainly didn’t set the external world stakes for what happens if we disregard those messages and fail the expectations this abusive society gives us to survive. But we do participate in believing the message.

We participate in how we frame ourselves to that message, and how we think about ourselves in relation to that message. We can cage ourselves and that message, exaggerating and amplifying it, only ever comparing ourselves to that message, and calling that message “truth”.

We do this to ourselves long after the world changes. And from that mental cage, we leave no space for change.

It takes a lot of mental energy to trap oneself. It can also take a lot of creativity to keep oneself trapped, distorting any positive messages that point out that things aren’t necessarily the way we keep insisting they are. This also drains our creativity, and distorts our relationship with our creativity. It’s a skill, creating depths of emotion and sensation out of basic thoughts and words. That skill can absolutely cut us just as much as it frees others.

Letting go to be able to receive

The open palm. I don’t visualize a lot of things, but during my PTSD therapy years back, the open palm was this huge breakthrough for me. Where I realized there was no way to let anything in, no way to seek new information, new truths, new perspectives, etc, if our hand was clenched upon an absolute. As long as your holding something tight, be it an idea, belief, pain, memory, you cannot reach out to accept anything else in. One has to release it all to be open to what will come.

This includes how we see ourselves. How we see our past. How we see our journey and where we think we are on it. None of that can be re-created or reimagined if we are so tightly clenched to our preconceptions and definitions of things that are purely conceptual.

I think mindfulness mixed with art therapy is extremely healing. It helps to break down expectations, and face that we are the ones giving it value. That when we feel the worst stakes crushing down on us because we have failed to meet an expectation, we are the ones who participated in that relationship of thought and punishment.

When we do it because we lack self-awareness, it can be extremely damaging. But gaining self-awareness doesn’t mean it’s not extremely hard to let go. So there are things like a practice of art, a practice of creativity, that shows us it’s okay to let go and explore something new, and to be something — someone — different in that moment.

You don’t have to conceptualize consequences for being free. You can just be free.

Find ways to seek new sensations. I always wondered why art rarely focuses on olfactory senses, considering how memory works, how intense a simple smell can have on our emotions. There’s music, rhythms, and dancing, and moving that can unlock muscle memory and engage the nervous system.

There is the act of making visual art, finding a large canvas to move around and explore with one’s whole body, not just the eyes. Paint over it a million times — paint with dirt; it doesn’t matter. It’s the act of letting your body make a mark, to live in its environment and be a body being that’s important, not holding onto the results.

There’s telling a story, not worried about which words to use, using your whole body to tell it, possibly recording it to get the emotional cadence from the voice. Singing — one could try singing a story like an opera.

It’s about feeling, and letting art lead the way. Making art to help to connect with one’s feelings, giving them a safe outlet that’s contained for those who fear being overwhelmed by their feelings. Creating space for art can be about creating a safe space to experience feelings and sensations that one does not feel safe to have in their everyday world.

Trauma can make feeling seem dangerous. Art can provide safe space and acceptance. Ugly art, strange, distorted, raw, uncomfortable art can be so cathartic when dealing with trauma and trying to find worth in what feels worthless.

Reconnecting with the source of creativity is reconnecting with being alive

It’s so important. It is so healing. It’s a journey that never ends because creativity is what every living being is. Anything and everything you do can be creative, because it’s a part of existing as a living being.

We are not unfeeling machines that only do what we’re programmed to do. We are not inanimate objects for the background of someone else’s existence, meant to be neglected and dissapear because we don’t fit the mad conceptualizations of society. We are an amazing collections of atoms that have formed elements, cells, thoughts, will, and actions: that we exist at all is the creative force.

Returning to celebrate what it is to exist, to feel, to conceptualize, to act, is how we recharge our creativity. When we stop emulating the inanimate and the automatons, we remember what it is to truly exist.

You don’t need to buy a book for this. You don’t need to pay for a class. Although, it doesn’t mean you have to do it alone. The celebration of life can be shared, creativity flooding out, allowing us to change with our moods — allowing us to have moods — and accepting it all. Just ensure that you can do this practice with others without activating the judgemental inner self. If you feel like you need to perform, don’t trap yourself with an audience and claim it’s to help you heal. It’s not; it’s to continue harming yourself.

When one is recharged again, no longer growing dim as you’re changed by this process, you will find that your creativity flows again for those projects that just weren’t getting done before. Not only that, you find that those projects change as you return to them, becoming more interesting, more vibrant, more purposeful, because you have something to give them now. You’ve become connected to what you’re doing and have something to create, instead of mindlessly producing for some supposedly essential goal.

What is truly essential?

There’s something very sad about being asked to disconnect from the many things that tell us we’re alive, all in the name of survival through the exchange of producing meaningless things or selling our time. It’s dehumanizing. De-being-izing.

How many times has the world told us to put aside how we feel, how we think, who we are, all in the name of some supposedly greater goal of… what? Doing a job that doesn’t actually need to get done? Providing a service that doesn’t really add value to community? Replicating a trinket that’s tossed in the trash, or creating content that is unsatisfyingly consumed, leaving people hungry and empty and seeking the very thing they’re being told is inappropriate, childish, immature.

We just want to enjoy our lives while we’re living them. And unfortunately, the twisted world out there that humanity has crafted doesn’t think that’s a good idea. (Seriously, why? What’s the big fucking deal with enjoying life at any age?) The world tells us our enjoyment needs to be regulated, kept to a slim “if you’re lucky and make enough you can be rewarded with…” all so we’ll work more for those who profit off of us.

Fuck it. Give yourself permission to enjoy the moment, every moment, without giving a fuck about societal expectations to turn you into an unfeeling, unmotivated, lackluster robot. You don’t have to be something to be happy. You don’t have to know what you need to become to finally be happy in this distorted world. We are all being, this very instant, and it’s exactly enough.

Don’t become a dead product of a sleeping, unaware society. Creativity helps us wake up and remember the pure beauty of simply existing. Where we are all worthy and deserving without needing to prove anything to anyone. Where terms like failure, wrong, and mistakes are nonsensical concepts. If you don’t know how to break free, the creative practice can help show you the way. And when you bring that into everything you do, you never have to fear being disconnected from yourself again.

Setting Boundaries With Expectations

Gaining Fresh Perspective

I was planning on checking in some days back. Had written the whole thing out, only to end up with another anaphylactic reaction and back to the ER. By the time I was out and looking at the submit button, the moment had passed.

So much keeps changing. The hardest thing to find is perspective right now, because of how this condition works. Anaphylactic reaction is your body basically killing itself to fight off whatever set off the reaction. It means that during those moments, the chemical cascade rushing through is defining everything.

Survival to the point of self destruction. It’s everything I know about living with PTSD since small, so maybe this was the illness that my brain is most willing to rationalize, possibly even set off because of such a difficult psyche. MCAS can be triggered through trauma, through other chronic illnesses too. There’s plenty to choose from.

Things keep changing so rapidly as I start to treat this condition in a way that’s actually working. The changes are so extreme on my body. I’ve regained circulation in my arms. My fingertips, which have been giving off electric shocks since the ER, now suddenly calmed. I regained circulation in my skin. The scratches and patches of scaly skin suddenly have color to them, like washes of sepia.

My executive functioning has changed completely — I can task switch with ease all of a sudden. I’m painting detailed work because my eyes aren’t bothering me anymore. My eyes aren’t bothering me anymore. The underlying condition is there, but it’s not being set off.

I’m not obsessing over anything — I just stop, now. It’s the most bizarre thing in the world to have found the kill switch that just wasn’t there for years.

And then I’ll eat the wrong thing, or smell the wrong scent, and it all unravels…

It’s life or death heart racing, throat swelling, mouth and stomach burning, chemical cascade of doom as all my lymph nodes swell up and my skin turns pale and papery and loses sensation.

It feels like zero to near death, just like that, except it’s not. I have no proper perspective on this illness because I have been in that stage I just describe practically 24-7, for years now, and it’s not near death. It was only near death when my tongue started swelling a little bit more and my chest didn’t want to open enough to breathe. (I mean, if you want to get technical and add in the adrenal insufficiency, it was already death…)

And that new stage where I’m not an anxiety riddled, neurotic, inflamed mess? I don’t know if that’s “zero”. I don’t know if that’s my default just forever out of reach. Or if it’s the stage where things are a little better than my previous default, and there’s something even better waiting.

I have no clue where I am in this process of healing, only that I’ve managed to get out of that previous default. And that my body is also now capable of experiencing that rushing toward not breathing stage. Two extremes that, with enough perspective, might actually be dots on top of each other on a chart for how much they are alike. I don’t know.

Remembering Me

What I do know is, as the inflammation lowers, and the chemicals that impact my neurology start to fade with fewer reactions, I am slowly coming back to me. I’ve found that a lot of the neurosis, anxiety, and inflexibility in living is coming from the immune response. In so many ways. There are levels to this.

Just the other night I was defining myself by the state I was in, remembering that version from before the really bad decade of illness, who would be manic every night, hyper-focused on a project to deal with the excess of agony being felt at an emotional level over absolutely nothing. Every night since I was a teenager living in a moldy basement, that’s the level of pain I had to endure, and I was suddenly feeling it all over again.

And then I realized, oh, mast cells are more active at night, which is why the meds are taken at bedtime. They have a circadian rhythm, which is probably why not only do I naturally fall asleep around dawn, but that habit of sleep came from following those disturbing, long nights of chemical distress. My bedtime is dawn; I need to take the meds at nightfall.

I cut out eating at night, to give the mast cells in the gut nothing to react to. And I make sure to avoid anything emotional or too energetic at night so the response can’t be triggered through stress. Sure enough, no mania, no physical/emotional agony over nothing. The problematic chemicals didn’t flow because the mast cells weren’t being triggered.

My mental distress is a response to physical illness, and good fucking luck trying to go through a pysch doctor to ever get to the solution for an immune disorder.

Self care has to come from a place of understanding the self. You can’t care for what you don’t understand. What this illness did to me removed me from my sense of self, and from my sense of being in my body. I have been burning my hands for weeks — possibly longer — and not knowing it. I only started noticing once I had gotten my inflammation down long enough for sensation to return to my hands. I thought I was “over” sensitive because everything was hurting. First the nerve pain and now suddenly I could see the rash on my hands and fingers, and everything felt like pain.

Because I was in pain.

The water temperature of our facet gets too hot, and I didn’t notice when rinsing the dishes and washing the cat plates multiple times a day. Every day. I had others test the temperature to confirm it wasn’t just a lack of perspective on my part — because that’s the thing: my perspective is warped by this illness. For so long.

Perspective is something always being built, adjusted by every change, big and small. It’s never final, never stagnant… except when our minds become small and shortsighted.

It’s like washes of paint, forever transforming something into clarity or revealing a lack of it, obscuring and removing, transforming and unveiling. And in there, somewhere, is the truth, but it will always be limited by the eyes looking and the mind perceiving. It just is.

This is the texture study I couldn’t start because of the neurosis. I was able to start working on it this week, around the time of the second anaphylactic emergency. How it started looks nothing like how it is now, and this moment — this snapshot — will be nothing of what its final form will be.

My eyes have been fucked for years, and I just started to come to terms with that, only to learn, hey, the eyes have mast cells in them too. The chemical cascade of the immune response was adding inflammation and strain, exhausting my eyes until the underlying Exotropia flared. But if that immune response isn’t happening, I don’t have a migraine 24-7 anymore. This week I finally remembered what a boring old headache feels like.

Writing what you know

Part of not getting back to writing is my acknowledgment that I can’t write people when I don’t feel like a person. I have been so out of touch with living for so long now, and after the last time the mold hit and I built the cleanroom, my brain changed drastically. So completely. I still haven’t recovered. I gained enough perspective this last week to remember more of what it was like to be whole, and to see how I am far from it.

My emotions are waking back up the same way the sensation in my hands did. I’m regaining memories — while also becoming aware that I keep forgetting what month it is, what I did yesterday, if I’m near the beginning or end of the month, etc. I can’t plot a timeline of what I’ve been through, and it’s scary to become so aware of a deficit I can’t even be sure isn’t new.

I want to believe the memory issues are a side effect of the bigger anaphylactic response, but I can’t know for sure. Not without more time.

I am returning to my body, and it is jolting. Remembering and navigating all these sensations and emotions is difficult, disorienting. And then adding all that intensity into the flares of the illness is, well, extra. Because it was bad enough being in this body when it couldn’t fully feel what was happening. Now it can feel more, and it’s something I need to learn to cope with.

Everything has changed

I am not driven to do anything but heal right now. I am not driven to prove I am alive by doing things, and that’s really the raw truth of what has been pushing me to get back to living while bombarded by the constant chemical cocktail of the anaphylactic immune response. I measured being alive by being able to get back to what I was doing, because I felt chronic illness was taking me away from that. Illness had interrupted my life, something that was holding me from doing what I love… and that was all I could define it as.

I didn’t measure it through feeling, because I wasn’t feeling much of anything. So there was never a rush to feel better physically once the nerve pain in the face stopped. I ignored my pain and discomfort; that is the fucking default to disability. Every moment is about enduring until you just stop looking at it, stop acknowledging it. And it’s shitty, and I can’t claim it’s the “wrong” way to go through chronic illness, because fuck, it got me through and it was all I could literally do when my nervous system couldn’t do anymore.

I wasn’t rushing to feel better emotionally, because it was the same damn thing. What was the point of having emotions over something completely beyond my ability to control? Emotions were better invested elsewhere, except mine had numbed so much, there was little to invest.

I don’t know if my nervous system was responding to the chronic chemicals, or trying to adapt to make things less painful. Either way, it resulted in my brain — the sharp teeth — deciding everything, driving everything. And when the logic part of the brain is coping, it’s with patterns, curiosity for distractions, games that become neurosis. Every thought is essential, and it won’t stop shouting those thoughts… to help me not feel what I was going through.

Boundaries with expectation

There is no point in having expectations when your perspective is a sliver wide. I have adapted down to this illness for the majority of my life — certainly since my teens — and I don’t know what being healthy is going to look like. I don’t know what I’m going to be able to handle to control this illness and prevent it from flaring up, while also living a full life. I just know that I’m not there yet. This silence I’ve been feeling lately is both full of so much possibility, and absolutely nothing at all, and I will not know who I can become until I am them.

For now, I need to take care of myself. Which means letting go of what I’ve already let go of this week when I wasn’t paying attention. I have no expectations of results on anything in regards to writing, coding — being. I have things I must do in regards to researching this illness and navigating diet changes and supplements, and everything else is just… being. Feeling. Remembering what it is like to be a living, breathing, empathetic being that feels.

I’m looking forward to it. Looking forward to remembering what it is I was writing that I couldn’t get back to because I had forgotten this part of existing. And that’s the thing; you can’t separate a creator from their experiences and expect them to be able to write something whole.

I was fighting this, knowing that I wasn’t ready to write because I couldn’t connect with the part of me that feels my writing. So the logical brain came in and said “fuck it, do it anyways.” Because that’s what the rational does. It talks about measurements of gains and loses. Money. It talks about no one being able to see through the facade. How there is value in going through the motions in the hopes of jump starting what isn’t flowing. There are so many reasons to just “do the thing” that I completely agree with. But creativity is a whole person experience. It requires the psyche to be there, adding important context. And mine just wasn’t showing up.

Be it physical malady or psychological side effect, I couldn’t connect and get into the state to understand what I was trying to write at the level it needed to be understood. Hence I couldn’t figure out how to edit it, because I didn’t know what exactly I was trying to say in the first place. So the neurosis stepped in, hoping to find a logical answer to the wrong problem.

Faking it doesn’t work, but it feels like doing something…

I wanted to be okay. And to prove I was okay, I wanted to do all the things I couldn’t do because illness kept getting in the way. So I wrapped everything about my ideals of getting better into getting back to writing, even as I promised myself I would be gentle with myself. But I wasn’t, because I couldn’t feel the pain I was inflicting to begin with.
I just wanted to be better so desperately, that I was forever looking at the goal I needed to reach to prove it. Never at myself. Never at the hurt, the illness, the pain of being left behind in life. The goal was far less painful to focus on.

Perspective frames everything

I can only understand this because the chemicals that were bombarding my body are doing it less now. There’s no point in me beating myself up over doing the only thing my brain chemistry would allow. And now that it’s shifted, it’s still the same lesson. There’s no point getting upset that I can’t hold onto the motivation to get back to writing to the point of self destruction. I’m not that person any longer (until another flare, I suppose.)

Things will happen in the time they take to happen, and it’s exactly enough. I feel so much pity for that other version of me who was desperately trying to prove everything was okay by neurotically going through the motions, unable to get out of the trap. Unable to feel how nothing was okay, and that trying harder at what wasn’t working wasn’t ever going to solve it.

Everything has shifted drastically, from health to perspective these last weeks, and I don’t know where it’s going to balance out. But I remember myself more, am more in this form, in this life, and I am better for it. The suffocating feeling that has been following me for so long… to realize that was real, that the anxiety and feelings of dread — like death was going to slam down at any moment — was part of the chemical cascade that goes along with your mast cells over reacting all the time… There’s peace in understanding that. More so once I was able to pull the reactions back more through eliminating histamines. Even as I observe the smallest things setting off the biggest reactions in this body, I still have that feeling of peace from this fresh perspective.

I have lost a lot of time to this illness. I’m probably going to continue to lose time to this illness. But trying to solve that by breaking myself — doing more and getting nowhere — doesn’t feel like a viable option anymore. I can feel things again; I want to enjoy the experience of living. I want this change to sink in and continue softening these straining muscles and anxious, rigid expectations until it all dissolves into soft foam. I’m tired of the only thing I feel being pain and anxiety and the forever hovering exhaustion. It’s time to experience more.

My allergic responses have actually managed to get more problematic

It’s been an interesting week. I was focused on the OCD, examining all the things I do, and trying to see what was working and why — like putting my thoughts through the language section of my brain to not reread the last post I did a million times seemed to have worked. It’s not just becoming aware of it; I need to either verbalize or write it down to really cement it in my head. Good.

I was also working with art — I’m arting! <3 The goal being to find a way to compromise with my neurotic, perfectionist default to create something. And yes, I did, I made a pretty I just adore. Used lots of paint splatters, acrylic ink, and acrylic paint pens, all on watercolor paper so I could really play around without destroying anything. It was a good time making something that I had no idea what it was going to be. It’s like a micro-scape of random, and I love it.

But I made this in response to the piece I couldn’t touch. I had sketched out a very fine detailed, lovely little bit of texture I want to bring to life, but I saw the trap once I was looking at my watercolors. Everything I own is too… refined. Too neat. They were like markers instead of watercolors, and I knew that once my brain saw the path to photorealism, that’s where it was going to force me to go. And I didn’t want that level of neurosis. I don’t want to be trapped, hating what I’m making because it’s not fitting some ideal my distressful brain has defined out of nowhere. Instead of just, I dunno, discovering something new and different and freeing on the page.

I still don’t know how to compromise with it. It’s avoidance. I see the trap is there, and I don’t know how to walk a safe path with it yet. But I’m going to have to try, all while acknowledging all the dangers. And eventually, it’s going to happen. It’s going to become normal.


Allergy attack

Right before I finished this little painting, I ended up in the ER. It’s a testament to me being completely unaware of my body when I’m hyperfocused on something, and also just how I’ve normalized my allergic reactions. I’m used to my pulse racing — it’s been happening constantly for over a week now. I ate something I shouldn’t have, wasn’t sure and blamed it on environmental stuff, and the day before last, I had a big helping of the thing.

When I took liquid benadryl that night and my face immediately broke out into scaly patches, I thought I was reacting to the dye free, everything free medicine, not the thing I had eaten that day. And the next day, when my hands were shaking at my allergists, and my brain was so damn slow, and I was so tired I wasn’t sure if I was going to make the drive home, I blamed it on the lack of sleep for nights on end because my cat’s blood glucose had been dropping into dangerous lows. Blamed it on the Benadryl — maybe I’m just one of those people who get bad reactions to everything.

Blamed it on forgetting my ADHD meds that usually wake me up shortly after — and they did, they woke me up when I got home and went back to painting. But my hands were still shaking, and my pulse was hovering in the mid 120’s and, although annoying, the tremor was a cool effect with the paint pens, so whatever. I’ve had a racing pulse before. At least I’m not in screaming pain.

When everything becomes compared to the intensity of that face nerve pain, do I even know what a reasonable perspective to pain is anymore? My tongue has been burning after eating for years now, and as long as it’s not screaming face pain, it doesn’t need my attention.

It wasn’t until my partner got home and pulled me away from arting, that I caught my reflection and paused. Something was off. I checked my tongue and it was the biggest it had ever been — and granted, it’s already too big. A year ago it swelled up and never went back down, and I assumed, I dunno, the pituitary cysts had fucked with the growth hormone or something for a second, then never reverted.

Last night it wasn’t just swollen, but oddly smooth. And I started to notice that my throat felt tight. And not much later, my chest started heaving at random intervals like I had forgotten to breathe — but I was breathing. It was like I needed a deep breath because my normal breaths weren’t doing anything.

My EpiPen was expired. I got a set in 2018, and had felt ridiculous at the time. A bee had stung me and it had welted up, and the welt remained for months until finally fading. But it wasn’t life or death — I’ve had allergies for decades now; it has never been life or death. Why would it change now?

Still, I made myself go to the ER, having to convince my partner that no, it’s actually a good reason, stop asking google over me (my fuck, I wish I was joking). By the time we got there, my chest felt tight, not wanting to open to let air in. But not deathly tight, not panic inducing tight. Just a promise in there that shit was going to go sideways pretty soon.

It was interesting, partially cuz through the whole thing I was still wondering if I was actually having an allergic reaction. Wasn’t this supposed to be the worst thing ever? This was slow, confusing, and certainly no pain. More numb than pain. Maybe I was just overreacting. Nope, I was under reacting. I have normalized too much with these allergies to know what’s going to kill me.

First time getting a shot of epinephrine — that felt like something. Thought I was going to shake away from shivers, teeth rattling — I have no clue why everything got so cold from it, but then suddenly heat roared in and I could feel my arms again, which had gone numb when they were looking for veins. And then it was fine. Like it didn’t happen. My pulse was flying, but not as bad as when I didn’t have the epinephrine, and I was toasty warm, alert, and ready to leave. After being politely reprimanded for not renewing my EpiPen prescription and using it.

5 years I didn’t need the damn thing. I honestly never thought it would be needed.

A Rambling Theory

So… why now? Why big? I’ve been taking more anti-histamines, not less. I’ve been having less allergic reactions as I solved the biggest environmental problem: ammonia from the litter box. Why would I have such a big reaction now?

At first, I would have said my immune system must be feeling stronger from having a rest, and therefore reacting with more power. After today, I have another theory to go with that — and it’s just a theory. I’m not in medicine, not a scientist. Just like to ponder.

So I have adrenal insufficiency, which means when my body goes through stress, it can’t produce cortisol to protect me as part of a healthy stress response. But if cortisol gets too low, you can die, so the body has another stress chemical to help keep the heart pumping when cortisol is low: adrenaline.

Now cortisol is eaten up by stress — stress ranging from chronic low grade stuff, colds, physical injury, emotional reactions, and yes, allergic reactions. So if you’re someone like me, whose cortisol isn’t going to increase no matter how much adrenaline is rushing through the veins — I need to take meds to get cortisol — that adrenaline is going to keep flowing, making the heart pound, desperately trying to get the body to stay alive. But I’m on a schedule of cortisol, and there isn’t much room in that schedule for chronic allergic reactions, so I tend to ignore it and take my meds when I’m supposed to. Because my doctor gets pissed if I take too much. It can lower immunity (there’s some sort of irony in here…)

Anyways, the big point to all this is, another name for adrenaline is EPINEPHRINE.

Yup, every time my heart was pounding over the mere scent of ammonia, my body was being flooded with the anti-anaphylactic chemical they inject straight out of an EpiPen. It was daily, over years. I can’t remember a time not having cats where their litterbox didn’t make me ill. And now, suddenly the last couple weeks, it stops because we finally found a system that works to keep the scent contained. I was no longer being flooded with adrenaline on a daily basis.

When this latest allergic response hit, yeah, my pulse was speeding, my adrenaline was flowing, but it wasn’t enough. It was a week of eating something my body was reacting to that had cleared my system, and I just reintroduced it with nothing to contain it. My pulse got better about an hour after eating — it wasn’t doing a constant reaction even though ingested. No, my pulse only does that for environmental stuff.

The pulse only started up again with the Benadryl, a sometimes side effect of Benadryl being rapid pulse. It was like the Benadryl had woken up the reaction (or I really am allergic to it. I’m not touching it until I know for sure. I’ve cut off any possible suspect for now.) My immune system had had time to heal, and I had eaten something very stupid, and no longer had the daily flood of adrenaline to help combat it the way it did before.

At least, that’s my theory. It sounds like a good story, but who really knows. Maybe the adrenaline the body produces really can’t compete with the injectable stuff, and it’s all flawed from the start.

New med

They put me on Singular for now to try to stabalize the mast cell response, and it seems to be going well. My pulse finally calmed (until I forgot my hydrocortisone and started thinking about the adrenaline connection.) But taking the HC calmed it down again… then the fever showed up. My biggest concern is that, as good as Singular can be for this problem, the most dangerous side effect is psychosis. So, you know, I might have somebody check anything before I post for a while, just in case I’m losing my shit.

Adrenal insufficiency has dangers of psychosis, but the little I felt of that is, I’m fairly certain, nothing comparable to a drug induced psychosis. So here’s hoping I’m not the always gets the worst side effects person I usually am on this particular one.

As frustrating as needing to go to the ER was (I suppose, the frustration of my allergies hitting a going to kill me level), it was also, weirdly, validating. Because I’ve been to how many doctors? How many ERs? Mostly for my pulse flying while exposed to an allergen, and then being perfectly normal once in the wonderfully sterile, perfectly filtered air of the hospital. Same with my brain just checking out with inflammation, body slowing down to a crawl, losing so much of my life, and then hey, better environment, no more inflammation, you’re fine and full of shit. Where the face pain was written off as tooth pain, and me treated like someone looking for pain meds instead of looking for the screaming pain to stop. Medical gaslighting sucks, but hey, all that cured by me being so oblivious, I missed I was having a serious allergic reaction to the most delicious, keto friendly chocolate hazelnut butter spread ever.

I’m pissed that most healthy things are high histamine. Like, weight management is tough enough when you have immune issues, without adding on that the healthy stuff is going to kill me a little faster, somehow. I have to be so damn perfect with what goes into or around my body as a result of these allergies, and it only gets more limiting. It’s given me multiple eating disorders.

Fasting is so easy — and feels so safe — compared to having overwhelming decision fatigue, guilt and possibly horrible consequences by eating. And when everything you eat slows you down anyways, makes you dumb, digestion refuses to work, it just reinforces it. I can call it intermittent fasting to sound trendy and smart, but it’s just keeping the difficulty of digestion to a short amount of hours, and totally not getting enough calories (cuz people bullshit about eating enough while intermittent fasting. It takes time to eat that many calories, especially with “healthy” food.)

Anyways, I’m actually quite happy about things. It’s nice to art, nice to see a way through with this illness. Cuz hey, the ER doctor understood immediately; my mast cells are unstable and over reacting. I didn’t once bring it up. So if a visibly anaphylactic attack was what it was going to take to be noticed as actually having allergies when I don’t get a drippy nose or hives, but instead get zombie skin, racing pulse, low fever (writing this with a low fever right now) neurological issues, gut issues, and low blood pressure, then glad it finally happened so I can get the understanding and tools to prevent it happening again.

I really hope it doesn’t happen again. I had a bunch of different anti-histamine meds in me yesterday, yet still blew up. Maybe histamines really aren’t the issue for me (the rare hives thing.) Maybe allergies act in different ways and I’ve been unknowingly focused on the wrong way for me. No clue.

I’m tired of having to know so many things and rarely having it be useful to my situation. But maybe it’ll help someone else, so there’s that.

If you have allergies that don’t act like normal allergies, it could be MCAS, which is a blood disorder (so I’m told), and therefore will have the look of allergies as your immune system is the thing disordered, but won’t behave or be solved the same way. It’s not curable, but it is treatable, and that treatment can be everything.

I have hope because I was able to put my Hashimoto’s Thyroiditis into remission, and the meds work to supplement the damage done. Allergy shots worked and I’m no longer allergic to cats, even though dust mites and mold are currently still a nightmare. The immune system can be retrained, redirected, repaired. It’s just identifying where the problems really are happening to give yourself the best chance.

When you’re someone who would start a long ass game over if they realized they missed something they could only get earlier on, it can be hard to accept so many imperfections in living a life. I want things to follow logic, but that’s not the way life works. Life is chaos, and we have these stupid logic brains in our head insisting we can organize it, that it has to fit, has to make sense. But that’s just the unique madness of being human, and even in that, people really struggle to see the disconnect.

We build imperfect solutions to an imperfect existence, because it’s the best we got as self-aware beings that are destined to die. It’s not all curable. The right thing isn’t always the right answer. Repeating something over and over again does not, actually, make it true, no matter how persistent and willful. It just means some people need the lie to keep going, for whatever reason, because hey, imperfect AF and completely unaware of it.

I’m alive because I take my cortisol every day. I’m aging and wearing down because that’s what happens when you’re not dead yet; you age — not necessarily mature, but aging definitely happens. And there’s only so much one can do about it. I do my best to be healthy to contain my allergies, and that food is destructive to my immune system. So I guess it’s time to enjoy some junk food without the guilt?

Guilt, the true spice of life…

This fever is not budging, and this is going full ramble. I swear, if I’ve become allergic to the fever reducers at this point… >_>

It’s probably going to at least be a week to get through the full effects of this attack. It was ingested, and my body is not interested in eating to help expel it, and I’m sure it’s causing havoc on my gut. And there’s only so many meds I can take… cuz I don’t know if those meds that I were on the same time as I ate the thing, might actually be the culprit or contributing to the problem. There’s a worry that my system will over target, as it does, and knock out all my immune helpers. Dunno. Can’t predict, only overthink…

Lowering Histamines and Looking For Balance

So, I was able to get connected to a MCAS specialist in my area, but it’s going to be months to actually have an appointment. And if I’m going by the timeline of what it took for them to properly figure out and treat my adrenal insufficiency, the initial appointment will only be an assessment, and it will take more months of waiting for a diagnosis, treatment plan, figuring out what works, etc. So what to do while waiting…?

I have a bad habit of self treatment, but really, considering the symptoms I’ve been battling, it was either suffer indefinitely while no one knew what to do, or try and help myself. Right now, after some research, I’m trying a few things to help me deal with the symptoms — and I stress symptoms because I don’t truly know if it’s MCAS or not. It’s a good fit, but that doesn’t mean it’s the answer. It just means it looks good on paper until proper testing can be done.

The thing is, treating the symptoms is basically treating the array of allergic responses my body is going through daily. Some I didn’t even recognize as allergies because they’ve just been there so long, my normal. This last week has been a fresh hell. I had foolishly gone through one of those big tubs of coconut yogurt, thinking that it had been dairy alone that had made yogurt intolerable to me. Only to end up with burning stomach acid and a burning tongue and mouth since. It’s just this constant dragon breath, and with it, bouts of severe agitation.

For whatever reason, when my gut goes bad, everything goes bad. If I’m getting any sensory data from my gut, it feels like insanity, twitching, agitated madness on a sensory level I can’t really explain — and it’s not something I would want anyone to experience to understand. Outside of the screaming face pain, this has been my most alarming issue. The fatigue, cognitive drops and inability to hold my head up for hours on end might have felt like I was dying, but the agitation makes you want to die to stop it. It’s just not a thing a body should experience, ever.

This, obviously, wears on the psyche the longer it goes on. And because it seems to be connected to the gut, it also has a huge impact on mood. In the same way the gut creates the majority of our neurotransmitters (aka, happy chemicals that keep one functioning), when your gut is at war, inflamed, in pain, and potentially experiencing a die off of one type of bacteria with the introduction of a new one, toxins are released and there can be extra or less neurotransmitters as everything is unbalanced. The gut is kind of like a train station in that way, systematized to distribute what shows up to the proper destinations. But it has terrible security, and the bad can flow with the good, inflaming everything along the way and throwing it all off, including the gut-brain axis.

It’s been difficult.

I’m starting up H2 blockers again, aka, pepcid ac, to help deal with the constant stomach acid. Looking at liquid Benadryl for the burning mouth. And I’m trying a histamine-blocking probiotic for the first time that I’m really hopeful about.

Probiotics have been intolerable to me for years now. I used to think I had gotten an allergy to them because I would always take them when my immune system was targeting everything, usually after months of antibiotics. I had no idea that probiotics could add histamines into the system.

I don’t know why I don’t usually think of histamines when I think of allergies. They’ve been on my radar for some time, but I never really thought I was a histamine problem, partially because a lot of the gut symptoms I had experienced in the past, I had solved — or had seemed to solve. Histamines was a hive thing, right? Everyone knows that… but no, what I thought I knew about a lot of things is really just only pieces of a larger image.

This week, after that yogurt had a chance to set in and build some happy, histamine filled probiotics in my gut, I became aware of histamines doing their thing without allergies being involved. And yes, through hives (because hives were the only association I have with histamines.)

They’re just one offs, here and there, nothing tragic or particularly interesting. But when I ate an almond filled chocolate and had a hive immediately form on my upper lip, it was enough to make me stop everything and figure out wtf was happening. Which was when I learned about probiotics usually having histamine contributing bacteria that can make histamine intolerance worse. And as my skin itched, stomach burned, and I was overwhelmed with the frustrating anxiety that comes with my pulse racing and blood pressure dropping over having eaten the wrong thing without knowing it was the wrong thing, I knew I had to deal with it. Because at this point, any food was setting me off. Whatever my histamine tolerance was in the past, the damn yogurt had tipped the scales, and my gut was having none of it.

I am… better??? now. I still need to take the pepcid ac, and I know when it’s wearing off because that heartburn is right there, waiting to turn my insides into fire without something to stop it. I’m on day 3 of the histamine blocking probiotics, and I’m not sure if they’re helping, or if I’m just desperate so I think they’re helping. It’s difficult, because eating is so impossible right now that any probiotic is failing to get a food source that’s going to help it grow and sustain. And it is the war stage as these new probiotics come in to take out the histamine producing ones, meaning die off, toxins. Agitation.

Dealing with neurosis

I’m really talking about this because I’m thinking about how my OCD tendencies kind of fuck off when my health is good, and flare up when my allergies and/or gut are bad. Definitely when my gut is bad — it was a lifetime of having a bad gut before I finally figured some of this out. I don’t understand how I got through school, usually hunched over with stomach cramps and full of agitation for years while trying to focus on work. It was misery, and it was my “normal”, the same way as obsessively counting and adding numbers up in my head and bringing them down to a single digit — until it was the *right* digit — had been my normal. It was another thing I didn’t know how to ask for help with, because I was surviving and thought that was enough. Because trauma.

Anyways… (it’s always fucking trauma >_>), I’ve been trying to think of how I can edit my work without triggering the obsessive pattern compulsions my brain will default into as it turns everything to shit. I had thought I had a plan with going minimalistic, but I never tried it, partially because I knew the moment I had decided on it, it was a flawed solution. Going minimalistic would require me to create a rigid structure of writing I would then force everything to comply with. It would require hours of work deciding what was right and what would be cut, and would need to fit into a very restrained word count — bad fucking idea.

Of course, my patternistic brain wanted this plan. It feeds its obsessive nature, making my life harder while it plays its meaningless, exhausting games. It even gave some great justifications for the game — less words means less time writing, right? Not when I’m spending hours trying to turn a short story into a haiku. But it would give my brain something distinct to focus on so it wouldn’t get overwhelmed with choices, right? Also a lie, because it would become so systematic in its thinking about writing, that it would need to question every word to ensure if it belonged or not.

The only solution is to minimize what I choose to edit, and the time I allow myself to do the task. It needs to be in small batches so that I’m not allowed to hyperfocus and get lost in the task. It needs to be broken up with other things happening during my day so that I can’t default over and over into doing the one task.

Like, fuck, I have been coding every single day for weeks now and it is war to get me to not just open up my script and work on it as a default. I have to force myself to turn on the tv so that it prevents full immersion into my work. I have to stop and give in to these moments where I write something — anything — so I’m doing something beyond the same pattern of activity again and again. And it’s still going to be a war to get my thinking to change when I finish this code and get back to writing… It’s going to be like killing off bad bacteria and growing fresh, healthy stuff, except with my brain, every new activity can just grow those grooves too deep, becoming a pattern, a system of thought that wants to continue itself because it’s just so calming to always know what you’re supposed to do and how to do it…


Art as transference problem solving

I’ve been arting. It’s an experiment. A different medium to try and see if I can tackle a project without triggering the obsessiveness. I had to stop after I created the initial pencil outline because I could see the problem with the mediums I was using. They were too clean, too perfect, and in that was the promise that if I were to work with paints that could dry perfectly even, without any variation, I would automatically lean into that and obsessively try to make the image look photorealistic. I can’t help it. If the ability is there, that is where my brain is going to take me, to that mountain. I have to block the path completely.

Like a couple of days ago, I was able to make myself paint lines with my left hand, to ensure it was messy, ensure it couldn’t be perfect, and just let go, and that was a win. I mean, I was still looking for the pattern that would allow me to step away and say it was done, complete, and that had to be found to break free… But it wasn’t as bad as being on the computer for days, killing my eyes because blinking isn’t allowed, unable to pull away until everything is perfect.

I don’t know. Maybe this is everyone’s normal when it comes to making things, and for some reason, it’s a problem in me. Certain tasks absolutely require the ability to focus for long stretches. They require a mind that is capable of making the task interesting to avoid the boredom of doing the same thing, day in and day out. I mean, why are humans so content with sitting in front of a screen all day without something to reinforce such a damn dull, meaningless activity? From the outside, we all look mad, staring at screens, maybe typing, maybe bursting into laughter or anger — for HOURS. Fucking hours doing absolutely nothing as we convince ourselves it’s important. So maybe the kind of crazy required to get a human to sit their ass down and do nothing, yet manage to feel like they did something important, is just always going to be crazy feeling, no matter what.

Or because it’s so easy for it to become a problem as I obsess over getting everything perfect (or just patternistic to shut my brain up) I can’t navigate these simple things the same way as others can. It’s all booby-trapped right now, where my joy of getting lost in a project can lead to insomnia and forgetting to eat, refusing to do much of anything beyond hyperfocusing, and hating everything once it’s done because I have to let go of the pattern and be a person again.

I can do amazing fucking things when I’m in my creative state… but I can’t bounce back from the consequences the same way I could before. And I see how selfish it was to just check out of the world and out of my relationships to hide away in the discovery of creation. I can’t get that time back, those connections back. It’s something that requires attention, time and a full desire to want to grow with people. And I can’t do that when I’m lost in my head making things. I have to be able to find a balance, one that leaves room for life, and for self care, the other major thing I neglect when I’m lost in my brain making a world.

All of this to say I have nothing to show for my work on this problem — beyond a squiggly flower — but that I am working on it. The problem has been driving everything for so long, so solutions aren’t readily available until I’m truly looking at the scale of the problem, but I’m doing the work, looking for escape from these self made bars.

Will I read this page repeatedly, editing all the mistakes I missed, and then read again, and again, and again, even though I have a headache and my eyes are extra dry from the antihistamines, but my brain insists that it has to have the right flow, has to say things the right way, and won’t let me stop until that’s been achieved? I really fucking hope not.

Writing (and not writing) with OCD

A lot of writing about not writing…

I don’t talk about my OCD a lot, but I think anyone who has read either my books or my blogs have seen it come up, either in real time, or mentioned in ways that don’t quite come out and say OCD, but is recognizable as such. I got in the habit of not talking about my OCD just before my teens when it really started showing up, partially because I was already a wary young person, and I knew what fucking crazy looked like. I knew what happened to undesirable children after being through the foster system. And although I didn’t have a full grasp of what paranoia was, I also had a lot of that showing up as my OCD did.

Mental illness is both the most natural thing in the world, and also the thing you feel like you can’t share when you need to fit into a society to survive. Everyone else is so “normal”, because no one talks about it. No one mentions the hardships, the failures, the inability to keep up with the Jones while everyone looks like they’re keeping up with the Jones. Until you start to realize: it’s not the failures that are so shameful to society, but the feelings around them. The admittance of it all. The people that hold the source.

As a kid, I picked up on it — how can you not, when you need to be perfect to prevent ending up in the worst situation, depending on total strangers for your very survival? You have to adapt to everything as it comes, because battling reality in those moments could leave you without support, adrift, and soon dead. So I adapted to mental illness, and took care of my adoptive mother as her cancer resurfaced, and tried to ignore just what was happening in my head while living in a moldy basement, with untreated PTSD, untreated OCD, untreated depression, untreated anxiety, untreated allergies… trying to be perfect for others in the hopes it would better my life.

It did not. My parents passed away (as many do) and I was left with a lot of untreateds and no life skills in how to:
1) look at these issues
2) seek out help
3) have bodily autonomy when negotiating with mental health professionals.

Because young people — especially traumatized ones — are trained that an adult will always make the decisions, and they will always be followed even when they are not the right decision. Because mental health was not a topic of conversation in my family, the final rights to one’s body, one’s safety, and one’s mind when asking for help also wasn’t explained, and that was a disservice, one that is perpetuated in many households every day.

Mental illness is not an excuse for someone to take away your rights, or to make you feel like you’re undeserving of participating in your care, no matter how it’s stigmatized and disliked. That people hide their struggles with mental illness isn’t just from the social isolation that comes when society decides you’re not “of use”, but because there is a long history of dehumanizing those who have mental illness. Of rationalizing the physical removal and all levels of abuse on human beings because of mental illness. Because of emotionality in general, which is how an entire sex was punished when they might dare to seek financial and bodily autonomy — how many generations did we refuse females money so that men would have wives? But I digress…

When I write about the characters in the Paranormal Academy for Troubled Boys, and their problems seem so strange and unrelatable with the fantasy elements and such, I’m really writing a place where it’s okay to have mental illness and still be free to be oneself. Even when not free. Finding a balance in a good place that doesn’t ask you to hate the parts of yourself you’re battling, instead of the world trying to either shut you off — the good and the bad — to make you controllable and acceptable by their standards, or to just throw you away in exile. These were the only options I saw available to me as a traumatized youth. Conform or be exiled from the tribe.

A pattern of thought

I like to think of my OCD as having triggers, where I can say “If I can just get over my fears of ***, it won’t show up.” But OCD is a force under it all, a process deep in the nervous system even under those subconscious triggers, and it’s always there. It is my base wiring that will twist as it surfaces, such as in my editing, or any place where I’m suddenly focused in making something “correct”.

If I’m feeling fanciful, I describe OCD as a pattern inside me that I need to see repeated on my environment, and in all the things I do. All life has a pattern — life is a pattern of the inorganic into the organic. My version of life wants to change the external to suit my personal pattern, and when I do that, it makes me feels good and secure in the world. I see me, something familiar when before it was unfamiliar.

This pattern isn’t as distinct as something truly obvious — my counting games are mostly done these days — but it’s still the balance of objects, the balance of color and tone, balance of words and formatting, textures and flow. You see, anything and everything can hold this pattern, because hey, I adapt. This process of seeing something and wanting to craft my pattern to it is forever both a sense of satisfaction and contentment in the world, and a sense of dis-ease and misery. Because you can’t gain a completion of the pattern without the thing driving the compulsion — the horrendous underlying feeling that not having the pattern means you can’t be safe and happy in the world.

I like words. I like the concepts we place into words. I like codes — I read a book on making and breaking codes in my teens and it was such a fabulous time waster, so much more interesting than making mazes because of the nested levels of meaning that could be placed into symbols. The games that occupied my mind as I tried to distract from trauma and the difficulties of my brain… They were wonderful, because they helped me run away. But lately, now that I’ve gotten more of a handle on this immune thing, and am trying to build a life, these games aren’t a service to me, but a hindrance. The thing that I am, these aspects of myself, are preventing change at the moment, asking me to run away, to always be away from living my life.

It’s enjoyable, when not all consuming. Writing is one of these things, by the way. It’s not that OCD is only preventing me from writing by offering fun new things to learn or thinking of making interactive novels with a million endings, etc. OCD is also there when I’m writing, driving me to get these internal patterns out, translated, transformed, and understood so that a piece of my inner pattern has changed my external world in a satisfying way. Art is the same way — there isn’t a thing I do where it’s not there. I can’t load the dishwasher without some adherence or refusal to adhere to a pattern. This is a part of my makeup at every level.

It’s exhausting

I don’t actually know much about OCD. I have never sought a diagnosis, because in my paranoia, I knew the significance of what was wrong with me. I see patterns, including the patterns I put out into the world by interacting with it. Most people can’t figure out a simple puzzle, never mind know what they’re doing in ten minutes, and certainly don’t think down long roads of how their actions impact things. They’re not thinking at all, and what perfect bliss that must truly be. Because this thing in my head isn’t required for life; it’s just there anyways, observing, turning everything into the eye test from hell as it compares, measures, questions and twists every concept on end, trying to understand and inject meaning into things that are meaningless.

I see it as a step in human evolution, one very useful at times, but it’s poorly refined, hardly designer in nature. It’s the way my sharped-tooth brain works, hungry for data, for distraction, for conclusions to things that are chaos and don’t need organizing. It’s a pattern that demands a pattern be created in everything… so it can feel satisfied for the moment. Safe. Secure in a chaotic, unpredictable world.

But it doesn’t do it to feel safe. It does it because that is how I’m wired, and those good feelings are just that, chemical reinforcement to give in to the neurosis. Not actually a change of the world into something less chaotic and safe. Just a way my brain validates its behavior to be allowed to be exactly what it is: ravenous and with sharp teeth.

These teeth cut me more than they cut anyone else. Because PTSD is a part of my formation, human behavior became something my brain tears into to understand and then “solve” the pattern. And I would love to blame it all on trauma, some idea that a cure could be at hand, and this isn’t who I am cursed to be… but that’s a lie not worth telling myself. Because I’ve had to live with my brain my entire life, and I have to live with it going forward, and such lies don’t help anything.

I know it doesn’t always look like this…

My partner has OCD, was treated as a young teen. His brain is something he has to wrangle with as well, and even then, even with him, it still took me far too long — long past my trauma therapy — for me to really face OCD and start talking about it. Because the pattern was obvious at this point between the two of us. It was just in how we were able to deal with our patterns that was different. He externalized the chaos of his mind when suffering, while I formed a pattern to contain mine inside.

I couldn’t understand for the longest time why his was less controllable, less manageable — I thought a failure of the self, of character, whatever cruelty my trauma formed psyche would think when being unkind to feel better in my own struggle. But the reality was, he was able to stop his patterns while I wasn’t seeing the output as the problem. I thought I was coping by giving in with creative, beautiful products, while he had stopped the cycle and was facing it (or was too overwhelmed to even give in, depending.)

Trauma taught me to internalize, to avoid allowing people to see my pain to help, because a part of me saw that as pure vulnerability, and at my most vulnerable was when I was harmed. He had a better time of things, and was able to externalize and ask for help, allowing him to function in the world as a result, even if the world is still so imperfect and requires all the energy for a little bit of assistance.

It’s not a creativity aid, though

Writing with OCD, for me, is writing patterns, while being aware you’re writing patterns… and judging yourself for those patterns, and fighting those patterns, and trying to find a compromise with those patterns. Where everything has to mean something. Where you have to hold it all in your head to ensure you get it all correct and do it the ideal way. There is no ease when writing like this, but instead deliberation. The fun is in solving the problems you made for yourself by insisting everything needs to fit a certain way. Solving the structure that makes it suspenseful or emotional or sexy. A pattern is being built, and either you see it once a bunch of ideas are thrown on the page and you get to organize the chaos and bring deliberateness to it. Or it’s built from the beginning, and you’re just fighting with yourself to keep the shape, the form, fit the structure, and make it amazing.

I spend too much mental energy and fuel in doing things that don’t require all of that from me. And maybe that’s partly why I’m tired all the time, because I’m battling a brain that needs to build and climb a mountain — and stress test it a few times in different ways to make sure it works — before writing the next paragraph. None of this means my writing is any good, by the way. Just that it fits the pattern in my head, and believe me, that is absolutely the only measurement I have for if I’ve achieved something with the things I make or not. There is no room in here for external validation — or questions of validation. I have enough with one pattern, and adding in all these potential patterns that I’m not familiar with, asking my brain to reform around multiple ones, is too chaotic and overwhelming. I have enough false points of view in here; it is madness to intentionally add more.

But I do at times, because something convinces me when I write, usually when I edit, that the pattern I’m following needs to be refined to someone else’s standards, and that will then be magnified to an extreme that I cannot handle, even as my brain is the one building the structure.

When my illness reached the stage of cognitive loss after building the cleanroom, as difficult a way to live as that was, my executive functioning flatlining one after the other, there was peace there. The pattern was still there, but the demand wasn’t. There was no point in attempting to follow a pattern my brain had grown too inept to follow. What could the world truly demand of me that I honestly thought I could even respond to, when most of my days were spent trying to remember there was a hallway outside my door, or that one needed to eat, and dress, and take care of the house?

Getting my brain back has reminded me of how sharp its teeth are, and I am still left with few skills to deal with it. Because my saving grace was a broken brain. Complete avoidance of the things that trigger it. As long as I couldn’t make art, I would never be constantly comparing form to lines to colors to conceptual meaning, trying to inject something into marks on a screen. As long as I couldn’t hold thoughts in my head from poor working memory, I didn’t need to go through a dozen variations of words, sentences, concepts, reforming for impact, for emotion, for readability, for clarity of thought. As long as I didn’t work on my business, I didn’t have to conceptualize me, broken and flawed, in the middle of something that had built expectations in others for time, for productivity, for ability and satisfaction.

I was free when I was broken. Now, I’m tied back into the pattern with a brain getting the dopamine fuel it had been starved of for all these years, and it has energy to be so much more vicious.

Nothing is new

I am remembering how to live with this beast, a more dangerous version that has lost so much idealism and optimism. Its demands are greater the more I shirk away from the patterns it wants, and it leaves me frozen, not externalizing in a helpful way, but internalizing the battle before the pattern. And if my creativity was me giving into the pattern to “cope” with it, then creativity is now me losing to the pattern, or having built a cage so structured and refined, I feel safe enough to step inside to create.

This is harder than before.

I want to avoid it because I want to avoid the pain my brain inflicts on me as it magnifies every stray thought into something that needs all of me. I don’t know if this database is going to work, because I see that part of its creation was me giving into the pattern in a safe way, one not connected to the psyche in the same way as my writing and art is. It is an escape from the thing waiting for me, asking me to have to battle with my brain in ways I’m not sure I can win.

Because before the cleanroom and my “brain breaking”, I wasn’t doing those things I started doing every day. I wasn’t getting dressed or eating or taking care of the house. I was writing. I was so sick I could barely move, and I put everything into writing because that’s what my brain demanded of me.

There is no mercy in it. Negotiating is an expenditure of energy before the required war of battling the brain while doing the task, and then the war of pulling it away from the task. And I suppose it doesn’t need saying, but I do not trust my brain to let it do whatever it wants. Not because of how it won’t fit with societal norms, but because of all it has learned. If its sharp teeth can hurt me so, what defenses do other people have to it?

Am I justifying an obsessive pattern of difficult behavior because I’m terrified of my own brain? It certainly seems on point for OCD. Certainly on point for trauma.

None of this is new, just different levels of intensity. The break from it all, that was new. That was… both bliss and suffering to not be myself. I’m not worried that I won’t be able to write. I’m worried I won’t be able to live a life and write. Also not new.

I’m worried the battles I feel compelled to fight will tire me out the way the illness did, and bring me back into that half dead state… and unfortunately, that’s not an unfounded fear.

My emotions have had a huge impact on my immune system responses. Stress has a huge impact on my immune system. Lack of sleep, mood swings… all the things that happen when I’m not caring for myself because I’m caught up in a neurotic hyper-focus of work leads to my immune system being more self destructive than protective.

And this new level of health all feels still so unsafe. So… fragile.


MCAS is the next rabbit hole my doctors and I are going down. Mast cell activation syndrome. It had fit before, and was one of the things that had looked exactly right when I was deep in it, but my blood test was negative so I dismissed it quickly to focus on more useful potentials. It wasn’t until recently that I was informed that there are different versions, and that the blood tests only find one variation — and not necessarily on the first try. So this is the next direction.

I’m tired of all the energy I dedicate into getting better — I know, so fucking selfish after being allowed to get better — but it’s true. I’m exhausted every time I think about doing another thing for “my health.” Resilience isn’t a choice, isn’t a rallying of will to persevere. It’s just another pattern of my ravenous brain that won’t let me rest and focus on living the life I do have.

I don’t know if MCAS is the answer, but truly, it has so many promising fits as it understands poor modulation of the immune system. It can respond to anti-histamines, as well as show the link to dopamine and histamines — something I stumbled upon when experimenting with L-Tyrosine and mucuna. It’s also hope with the neurosis because of how histamine and compulsion are connected, how histamine and dopamine are connected — my ADHD brain has be running off of the chemical cascade my allergies and overactive immune system have been causing, which is why it’s been so chaotic, so confusing to have a stimulation and a bettering of health, followed by the crash as the consequences wore on in the body.

I’m allergic to eggs. Knowing this, I would eat an egg every morning at the time I wanted to switch my sleep cycle to (instead of my default of sleeping through the morning and waking after noon) because that immune response wakes me the fuck up and won’t let me sleep. This has been my battle for a lifetime, the way I become alive only when everything is going to shit, and how it all crashes when I reach “okay.” The cleanroom worked; I stopped having histamine responses every moment of my life. And then my executive functioning crashed and stayed crashed until I got an ADHD treatment.

MCAS also links to the vagus nerve therapy that had been so transformative when my house was overrun with mold. It was as simple as a tens machine with ear clips on the tragus, that I used to stimulate the vagus nerve. After enough time, it healed so much of my system so that I could digest again, and finally calmed my racing pulse. There also seems to be a connection — I haven’t read enough to truly know if it’s true or not — with upper spinal pain harming the vagus nerve, and it’s left me wondering about the formation of the small hump on the back of my neck and if it’s having a poor impact on the vagus nerve and immune modulation as a result.

MCAS doesn’t require protein to stimulate an immune response, which could be why so many chemicals/scents set me off — but also means allergy shots won’t solve it. It’s not uncommon to have the burning mouth syndrome and nerve pain in the face thing I had with MCAS either, so another connection. Same with the years of gut issues and oversensitivity (currently been feeling vommity cuz I recently added something I thought was healthy to my diet, but is histamine high.) And that stress and emotionality has such a huge impact on my health makes it a good candidate for the source of all these issues.

There’s a danger in only looking for one thing when faced with so many problems. Maybe I prefer it to collecting a bunch of diagnosis… But it’s satisfying to have one neatly placed label on top of it all, so my brain keeps looking for the way to organize the chaos of being alive.

I want an answer. I want some sense of predictability in all of this. Maybe then it won’t feel so fragile, these good days. I won’t have to think down a million different what ifs to find the most likely issues and test, and then do it again when that doesn’t work, over and over until reaching a balance again. Fuck, maybe I’ll gain a ritual of health out of it that actually works, instead of doing things that either feel like superstitions to try to keep pain and illness away, or me running and self destructing as I cope.

I want the answer and everything that comes with it…

But for now, I’m facing my OCD, the neurosis that is both protective and destructive on my journey. Writing isn’t hard — writing this proves that I can write still. But the things that get in my way are currently in my way, and that’s hard. The more energy my brain gets, the more this fight can either be the hardest one yet, or so fucking simple, depending on if I can let my brain get out of my way. Addressing the problem helps. Talking about it helps… so I’m trying.

May 7 2023

When Rest Looks Like Failure

Spent the day fighting my brain, just trying to unwind a complex script that suddenly became so much more complex once adding in the other stories to the database. And I knew it was as simple as tagging what needed to be tagged and following those strings and just, you know, holding it in my head long enough to get the thing done. But it wasn’t working. My brain couldn’t focus, couldn’t focus, couldn’t focus, until suddenly, dawn chirping through the window, my brain just clicked, and it was tick, tick, done.

And this is my frustration with my current situation. I know the ability is there, but it’s always out of reach until it’s not. And a part of me sees the waste of time and energy trying to reach something that isn’t going to be attainable without 1) battle or 2) when my brain is working. And I don’t get to choose that second one; it’s completely out of my control. But battle… battle feels like control when shit is going down. It feels like doing something when I can’t do anything about this situation. I want to battle because I want the lie that I am participating in my ability to function.

But it’s still just a lie.

There are factors to this, layers of justification and rationalization and what needs to be done when living in the world, and they’re not unimportant. But it boils down to this: What does giving up truly look like when you know you could be putting all your time and energy into something, but you are only ever going to get the same results?

Insanity is doing the same thing again and again expecting different results. But proving to yourself — proving to the image you hold in your head of what is required as a sacrifice to prove you’re giving your all? The last ten years have been a level of exhaustion and pain that has set my level of what “proves” I’m trying. And that was with untreated adrenal insufficiency.

I hold myself to these standards that demand something that I can’t reach, and that I can’t ever give up on, and even if I do get there, it’s never going to be enough, because when you’re forged in trauma, you expect it. You end up being the one who inflicts it. That’s what PTSD is; it’s self inflicted abuse at the subconscious level cascading through the psyche, nervous system, and body to rationalize terrible shit that happened that you couldn’t control. That my immune system over reacts to everything is more likely a side effect of the PTSD than of any exposure to allergens. To PTSD, everything is survival, and the body becomes wired, locked in and only able to know and feed off of that. It is the ultimate pattern driving everything, and it’s so difficult to upgrade ones software after living in the PTSD state since being a toddler.

When my adoptive father’s remaining kidney was failing, his brain started going. The dementia was so life altering at every level. And I remember thinking at the time as I was watching him suffer with losing his mind, how much easier it would be if he wasn’t fighting what he couldn’t change. So what if he couldn’t remember the date or what he was doing, etc? It didn’t matter as long as he was feeling okay, enjoying himself in the moment. We pretend we know where we are based on what’s around us, but where’s that on the continent, the globe, the solar system or galaxy? We don’t really know a lot of shit, but just fill in the blanks and in those little lies, we find confidence in who we are. Aka, brain functionality isn’t that important as long as you’re happy.

And that had seemed a great way to look at the world, to just let go of needing so much damn control over what you can’t even control anyways. I fostered that mindset in me when the illness was raging. Grew it when going through trauma therapy for the shit I had been running from my entire life, because I refused to die an unformed reaction to what trauma had done to me. That mindset has helped me so much… but I have still been lying to myself, and kicking my ass as a result for believing that lie.

The reality is, it doesn’t matter if the mindset is damn helpful; we don’t get to choose if we’re capable of having that mindset when our brain break.

I hate that. I hate that so much that I have refused to acknowledge it. Because when my life is flipped end over end at the direction of a breeze, I’m already forced to accept so much I can’t change, can’t control in that moment. I want to believe there’s something. Sure, I can’t control the illness, or my executive functions, or energy levels, but I can control *me*. I can have some fucking grace in illness. I can be the right version of me to see things through, and shit will be fine as a result. The silent magic spell I tell myself as I try to control one little thing so that I can control the fear and frustration and pain and all the other shit that I’m stuck feeling from this illness.

In that lie is so much expectation and pressure I place on myself during the most difficult points of my existence. I just need to exist and be okay with my inability to get a say in what’s happening, and that’s it… but I can’t. It’s giving up. It’s giving in to sickness. It’s being lazy. It’s not the adult thing to do. Being disabled is hard enough — I am so far behind at life — so I have to work harder at everything, including not being sick when I’m sick. Because otherwise I’m giving up on me, and letting it win.

I am trapped here, making shit harder on myself because rest looks like giving up. It’s the inability to enjoy the moment because I’m stuck trying to be in a different moment. And it sucks. It’s so damaging, and I don’t know how to let it go. Because every time I try to relax, try to allow myself to just let go… it’s guilt. It’s shame for not fighting harder to be the person I know I’m supposed to be if all these things weren’t limiting me. You know, things like my body that for some reason I can’t even accept is a part of me, because if I accepted this body, I have to accept its limits as my limits, and I can’t. I am a defiance to all that is crushing me down, and now, dear fuck, I get to add on age to it as well, just natural aging. Where the fuck is my grace in any of this?

I need a reminder of the pattern of mindfulness. It doesn’t change anything in my life except my ability to accept what I define as unacceptable. And that is apparently everything. But I’m fighting that too, because I don’t want to be okay in this situation. I just want the situation to be better. But I’m the damn problem in all this. I want things I can’t have, and I stubbornly refuse to let those wants go, because as long as I’m looking at a goal, I don’t have to face, truly, how difficult this existence has been for so long.

I am still living the trauma pattern, doing everything to avoid acceptance of the now. Building up things that don’t exist outside the head to wall off that one little task. Letting go is both the easiest and hardest thing to do, and maybe that’s why, when it feels like the world is shaking, our hands automatically clutch, grasping for support. This instinct to hold on is written into our nervous systems, to define our safety by the act of clutching to something, anything.

Does it make us feel solid, larger and safer, grounded in another? It adds weight, strain, tight focus. Immobility. It becomes identity, location, purpose when it feels like everything is slipping away. And how we clutch the harder we are pulled from the thing we’re grasping, responding with fight, becoming more and more the goal instead of adapting to the situation.

I need to be vapor. Something that can’t grasp, can’t be thrown when the world shakes, can’t drown when it all crashes in. Empty of all those needless, heavy thoughts designed to weigh me down and form me in only one way. Every breath a spreading of self, breath of all those around, not lost, nothing to lose. Atoms commingling with the objects and life all around, sharing space and energy and emptiness.

The beauty of being nothing is that there’s nothing to fear losing.

The difficulty of this condition is in what it does to my brain. The chemical chaos, the extremes of everything. One feels a ragdoll being torn, thrown out of living. Over nothing. The wrong chemical or protein in the air. No intent. No one or thing to truly blame beyond my own fucked up immune system. And in those moments, lost to reaction, unable to control the instinct to clutch or to what I’m clutching to, is small, fragile fear and frailty, trying so hard to not be known as such.

Why do we know that fear is more dangerous? This instinct to hide what is so rational and natural in the moment? Accept, accept, accept. Why is the exposure of fear wrought with vulnerability more so than the act of feeling fear?

The rejection of help for a being that is part of a social species that is in desperate need of help. How many times as a baby did I cry until I learned that no one was coming? Because it happened that early, and it is so deeply wired in, who is to say if one can ever be more after that…?

I’m getting closer to me. I can feel it. It’s just this pile in the way that needs stripping down, unbelieving until I’m light and free of everything my nervous system is clutching to right now. It’s work, letting go, when your entire system has been forged to hold on from such an early age. And I keep thinking it only has to be done once, but no. This is the process. Coping with a system that has trauma set to default every time the world is perceived to shake. Eventually, hopefully, I’ll be able to remember that. But for now, it’s just doing the work and showing up.

I honestly don’t know why I’m sharing this part of my journey, beyond it needs to be shared. Because if I can’t find a place for me in my writing because of the desire to form a strong brand, I’m not going to be here to write. I can’t fit whatever neurosis my brain is trying to claim branding is — whatever neurosis the world insists it is — and if I value something conceptual over myself, it’s going to erase me. It always does. I have to stop participating in my erasure.

May 6 2023

Lamenting A Life Not Lived Is A Fucking Waste

So today was pretty shit. After a few days of unprecedented calm with my immune system — and I’m still not sure what calmed it. If it was something I added or didn’t add to my diet, the rain that had washed out all the pollen, the fact that the new cat litter doesn’t track like the old stuff, hormones — I don’t know, and that’s frustrating as fuck. Because it’s back to before, and I’m just feeling how shit this is. Feeling it after having this surreal, beautiful vacation from my body overreacting to everything and making everything feel like death.

Which isn’t really an exaggeration; that’s what the adrenal insufficiency basically is. Low cortisol means high adrenaline as the body tries to compensate to keep the heart pumping without enough cortisol. And for whatever reason — maybe just plain old stress on the body — the allergies cause my already low cortisol to drop and my heart to race… Whatever. Anyways.

I’m here to ramble about how, in all this frustration of noticing how little I got done today — because my brain was in inflammation la-la-land by the time I woke to this allergy riddled, low oxygenated body — that’s all I ever notice. I notice my failures. I notice the life I’m trying to get back to, instead of the life I’m forced to live. And yeah, that makes sense — I don’t want to be in this body when it’s suffering like this. It’s dumb brain, agitation, racing pulse, low blood pressure, dizzy spells, pain bullshit. It makes sense to not want to be present for this… but it’s been fucking years now. Years of trying to get to a point of living while not wanting to feel the very uncomfortable life I do have, and yeah, where’s it going? What am I doing if all I’m doing is trying to get to something instead of experiencing the life I have?

My sister-in-law is dying. I’m not going to get into it, because it’s still in the process (with hope, but really, the kind of all you have is hope hope, because facts aren’t there to offer an actual substantial path through as it all crashes and burns.) And this is really about me and my feelings about shit — and my fuck, no one who is going through what she is going through and/or is close to her should hear my random emotional spewing as I cope with the news while thinking about my own selfish shit. So the less I connect me and my rambling to her and her family’s personal experiences, the better.

So yeah, dying. I get the latest “this isn’t us saying she’s dying, but shit just got worse and it’s obvious she doesn’t have long” news, while my body is going through its resurgence of fucking misery as I’m thrown back into the fear of if this is going to be forever. Is this all my life is but this damn allergic reaction and weakness and can’t breathe or sleep or think from racing heart, etc, etc? And it’s like, ten years now. Ten fucking years, and what’s waiting for me is what’s waiting for everyone, and this has been how I’ve been forced to spend the last decade.

I am not experiencing my life. I’m waiting for shit to get better. I’m still waiting for shit to get better, and I’m just losing years. And who knows what the toll is, right? PTSD alone is physical damage to the brain and body as it’s left unchecked and courses all these survival chemicals through you day after day, wearing out the organs until your body can’t do it anymore. My adrenal insufficiency is secondary; my adrenals still function for now. But my pituitary fucked off at some point, and without it communicating to the adrenals, my body can’t produce a safe stress response during times of crisis. Simple shit can drop me, and I saw it when the allergies were so bad I needed far more hydrocortisone to maintain. This allergy thing isn’t just stealing my time, and the things I do, but also my health. And I’m just, I dunno, done with it all. Like done, done.

That whole thing of life is what you do while you’re busy making plans? My entire life revolves around a condition that doctors still haven’t figured the fuck out. Because it’s not just allergies; if it were just allergies, the allergy shots would be enough. A freaking 24 hour anti-histamine would do the job. But it doesn’t. Certain scents — scents that don’t contain a protein source, aka, nothing for my immune system to react to — set off this cascade of insanity through my system, and nothing has been done to solve it. To even diagnose it.

It’s the specialist issue. Every doctor only knows one thing, and they don’t know where that thing connects with other things (aka, the human body), so I’m left going to one doctor for neurological symptoms (without a neurological source), another for adrenal issues (for a pituitary problem source) another for allergies (but not for the allergic responses to scents), and nothing is getting solved. Yes, pieces have been patched, but I still can’t go a breath near a damn litterbox without my heart feeling like it’s going to burst out of my chest, a migraine forming, and my brain trying to drip out of my ears.

I lost my 30s to this shit. Missed time with my partner and the people in my life I can’t get back. I’m missing people — life is happening around me, and I am missing out because every day is still this fucking issue, just a little less life altering. Destructive enough that I’m lying to myself thinking I can just jump right back into writing, but not so destructive that I can’t believably lie to myself. Oh, I can lie to me just fine.

I am ten years in this broken body and brain, trying to get back to the person I damn well know I am… while defined by ten years of this to everyone on the outside. If I lose that inner image of me, this is all that’s left. This. Sick, broken, every day a battle that I don’t want to have to fight anymore. When do I get to start being again? Or is it just going to always be this, battling this thing not interesting enough for the medical world to solve, but debilitating to me until it wins. Is this all it’s going to be, just running from suffering until my body just can’t do it anymore and dies?

I’ve lost me. I don’t like who I’ve become as a result of years of this. Fight. Defiance. Running on rage and bitterness and feelings of loss. The joy and enthusiasm and just pure optimism stripped from me as this damn thing keeps going. I’m sick of having to be wise, understanding of the things most people don’t spend a second thinking about because it scares the fuck out of them to even consider that they’re going to die one day. I was thinking about that since small, an abused foster kid knowing death was inevitable and the fleeting flicker of self was going to gust out. And so everything after was in defiance of that. Because fuck death and fuck anyone who would dare think they could cross boundaries and ignore others autonomy. I am running on embers from fighting to survive against this dumb fuck illness, and I don’t know how to fuel myself any other way.

This is who I’ve become while waiting to get back to myself…

Ten years a reaction. How the fuck am I supposed to know how to live a life now? Seriously? This thing has trained me back into a base animal surviving, and I see it, I fight with it, but until I can figure out what the pattern is I’m supposed to be slipping into, it’s just always going to be this default. This lack of living as time passes by and I’m left reacting.

It took my fucking vision. Fuck. There was so much art I wanted to make. So much I was waiting to do, and then it took that too. Like, what the fuck was I waiting for when at least then my eyes weren’t screaming in migraine pain or unable to focus? How was that somehow worse than this, and do I really think that I can still wait? That somehow it’s going to magically get better as this body keeps aging and breaking down from each reaction? Like, what does the pain matter in the face of that, of knowing that this could be my last chance?

Why do I have to keep counting all the shit I’m not doing, all the time being spent on things not getting done, instead of feeling any aspect of pride for the things I am doing? For the life I am living? Why does it always have to be a chase, the taste of dissatisfaction forever haunting me, fighting a clock as I add up all the hours not lived the way I want? If it hadn’t gone down this way, would I be searching for the elusive — I mean, it’s whoever I thought I was a decade ago, right? Like, is that what I’m looking for, trying to get back to who I thought I was before sickness interrupted me? Or was it before — who I could have been if not for PTSD and a fucked up start at the earliest of ages? Even then, if I had everything I think I wanted, could there be any satisfaction for this vicious brain that just wants to think all the thoughts and to know more?

Why the fuck does this version of me have to be so fucking cynical, and bitter, and so dissatisfied with all I’ve built, like all it can see is “what could have been” bullshit. I hate time travel stories. Absolutely hate them because it literally couldn’t have been. That’s just our dumb fuck brains insisting that “if this, then this” so that what, we can hate ourselves a little more for not having had a choice with our past? Or thinking we had a choice and blaming ourselves for not taking it? Why is being human this damn stupid and needlessly painful?

Lament of the fallen.

Dissatisfaction is self victimization at the base psyche level. To have so much, but then to let it sour as that thought crosses “if only…” It is so fucking worthless an endeavor to waste ones thoughts on, and I don’t really even think about it — actual thinking on “what if” is me shutting it down with “don’t be stupid”. But I failed to notice that I have been living that feeling every day while thinking I was safe, because the thoughts weren’t there.

No, the thoughts I have are… just wait. If you can only get past this, find an answer, things can change. If you can solve this, you can start living your life. This is too hard right now, but wait, heal — surely we can heal — and it’ll get easier.

10 years waiting for a different life because I couldn’t let myself enjoy the one I have. And yes, it sounds reasonable at some level — it sounded reasonable AF when in pain and fighting for every moment — but it’s all I know now. I don’t know what to do next or how to do it. I’m just stuck with this feeling that something was supposed to have changed, and shit was supposed to be easier — something that isn’t this is still needed — and it’s not here.

But there’s nothing left. It’s just me not here. I’m not living yet, still waiting for something that’s never going to come.

When every moment of every day beyond @ a 4 hour window was pure exhaustion and the pull of sleep, I couldn’t let myself sleep. I was fighting for so long, I didn’t know how to let myself sleep when I needed to sleep. And that’s been this illness for years now. This desperate need to measure my life being lived, only knowing I was alive by how I battled with everything, instead of just living. Instead of resting when tired like a being that didn’t define sleep as death.

But no, I was doing all the things and saying it was nothing while waiting to be allowed to do anything else. There was no meaning to anything because it was me sick, me interrupted, in the waiting room of life furiously scribbling notes instead of where I thought I was supposed to be and what I was supposed to be doing. And now, it doesn’t matter what I do; that feeling is who I am. Dissatisfaction and waiting to get to the place — wherever the fuck I’m supposed to be that means I’m finally there instead of here, and can finally get on with living.

It is such a waste of a life. Not illness — illness is just a part of life. Death is a part of life. But not appreciating the one life I’m living? That’s the fucking atrocity. And I don’t know how to change. It is so deeply ingrained, needing to know I’m doing something “worthwhile” based on a metric system I’m never going to be allowed to win, partially because it’s not mine. It’s trauma. The conceptual world I built around this illness and who I am at the center of it needs to break, the way it did for the PTSD of early years. But I have been so stubborn to even acknowledge that the illness was fresh trauma on top of me treating old trauma. I just wanted to be elsewhere already, not having to do all the fucking work all the time just to enjoy a simple moment.

I’m tired of being me, whoever this reaction has become. I had a really shitty day, got some very devastating news, and have still managed to find a way to beat myself up for not being whatever the fuck my judgmental brain thinks I’m supposed to be to be okay right now. There is no winning in here. I can’t even let myself feel bad without trying to make me a “better person” by pointing out how I’m currently experiencing life wrong — seriously, what a fucking monster of a brain I have…

The thing is… My adoptive mother was sick all the time. Cancer. She didn’t tell us until we hit high school, so she just seemed, you know, tired a lot. All the time. Missing out on the things we did. Barely doing things for herself as it progressed.

I think at some level, I feel like I’ve failed her that I could ever get sick and let it interfere with my life. Because I owed it to her to live what she couldn’t.

That’s what surviving is, right? When you lose someone, but you need to hold onto them. So you carry them with you, no matter how heavy the weight, because that proves love. We are so primal, we still instinctually believe the pain of love is proof of love. So we carry that pain. We hope to be forged by it, changed by it, so that we never lose the ones we love.

My mother had such big expectations for me, and a will of steel. And if she hadn’t died before I started college, I’m sure I would have been on the path she wanted, the one she could never tell me, could never prepare me for, because the cancer got her brain by the end. But my fuck, I was going to be someone for her, she loved me that much. I loved her that much.

So maybe I remember tonight why it’s never going to be enough, whatever I do. A part of me is still waiting for her to tell me how to become the person who proves that I still have her with me, and it’s going to be a long wait…

I guess survivor’s guilt increases the older one gets, and the more you’re left surviving while others don’t… I dunno. This is life. Fucked up, mundane, human. Forever coping with being alive.

Character Driven Plots for Character Driven Readers

Using Story Arcs to Develop Characters with Plot

So, because I’m working on fine tuning this element in my database, seeing what I need to get the most out of it, I thought it would be a good time to talk about story arcs. I’ll let you do the work of looking up story arcs, because I am not a dictionary, but I will say plenty about what they are to me in the writing process.

Story arcs are the ebb and flow of plot, motivation, driving forces, and impacts in your book or short story. They are the reason the characters are here, and they are the reason your reader is here. If nothing is happening in the story, nobody is showing up. This makes story arcs essential to story telling, but for some reason people don’t seem to think much about them.

Usually stories are described by plot, usually only one plot. Sometimes they’ll be a B plot, like you see with sitcoms or cartoons or most anything on television where you have a main plot and a B plot to fill time. But story arcs aren’t limited to two things happening at once in the story; that’s just the formula of writing that’s been normalized and then memed, as people do. Story arcs can actually be quite complex and quite simple at the same time, in the same story, and they span more than just plot points. They are basically everything in a story from the blood pumping through the characters veins, to the events on a timeline, to the music swelling in the background. And when that’s truly understood, and you learn how to organize these concepts for yourself in a way that works for you, your stories can reach an entirely new level.

Breaking it down

This is how I’m currently organizing story arcs, and I want to start off by saying, I’m organizing it this way because it works for me. It might not be the same for you and you want to search for that. You want to develop your own tools that suit you for the best results.

For me, at the moment, story arcs are comprised of character traits, character motivation, environmental forces — and not just the environment, but the setting, the culture, the world that is driving events that can’t be pinned on a character. And, of course, impact.

Impact gets its own little note for every single piece of a story arc. Internal and external impact. Consequences and sacrifices. Motivation is essential for character driven story arcs, but isn’t necessarily present for environmental ones. But impact will always be there.

Sometimes all you have is an impact you know you want to hit, and you need to figure out what you’re going to write to drive to that point. It is the most important aspect of a story arc to measure, because it turns the internal into the external, pushing events through character reaction instead of just through environmental factors.

For the erotica and erotic romance I write, story arcs also include sexual tension, relationship arcs, suspense and tension in general. You can have setting arcs to mark the passage of impact on a space, or building, or city. A story arc could be an emotional arc, which is something I would tie to character arc. But depending on your character, it could look more like a stress arc, or mental illness arc, or a character power development arc, etc. You can have a relationship sacrifice arc, with an understanding that there has to be a sacrifice to reach certain goals between characters, even in the simplest of stories, and you might not know that sacrifice yet, but you know you need to plan for one to be there. Maybe you want a pain arc, because that’s how you measure drama.

Every story might have something unique you need to keep tabs on to ensure it’s going right, and you can call that plot, or character development, or tension, but I find it’s important to classify them all under one topic: story arcs. Because they’re not different, or something to be tracked separate from plot. They are the plot. This is everything required to understand what breathes life into a story, when plotting a series of events isn’t enough. You need to think of pulses, drum beats, a theme song a character is living and imbuing into the story in that moment that changes as they change. Or whatever works for you.

Why story arc?

For me, to put it simply, these are the things I need to keep track of in a story because I can’t just hope to remember it all. The process of identifying and developing story arcs is basically the organization of what already happens naturally in a story for me. You’re trying to find the pulse and make sure the rhythm matches the events. Usually, that pulse is happening already for a writer, and it’s just a matter of maintaining it by paying attention.

But sometimes you miss things, or the first draft opened up an idea into something else that needs exploring. Sometimes you’re so new to something, you don’t even know what you don’t know, which I think is basically everyone. We need to explore a topic and develop it to understand it better. And that’s what making story arcs is about. Developing aspects of a story that go beyond basic plot to craft a better story. Designing a plot to be character driven for the greatest impact, instead of just hoping it will figure itself out once you write “the end.”

The moment you decide something is a story arc, you have made a choice of what you’re valuing in your story, and that will have an impact on everything going forward. So better to make it a conscious decision than to realize nothing is there at all.


If you did bother to look up story arcs, you might have seen a bunch of writing systems telling you they can only present in certain ways to be “successful.” But writing systems are where creativity goes to die, so don’t take it to heart. Instead, explore what these arcs are to you and what feels natural as you’re writing, and if that natural impulse is having a strong impact on the story or fizzling out.

There are plenty of pulses in a story that don’t require a form or a resolution, but instead flare up when needed to push the story along or give it greater impact. Motivational arcs can be as essential as a heartbeat drumming through every scene, or they can flare up once in a while like anxiety, increasing intensity without needing to resolve. Behavioral arcs can take problematic character traits and drop huge plot points as an impact, or they can just be quirky reminders of who your character is and how they act out in the world. And if you find you think you need to change something so integral to a character because someone told you everything about character development is change, think about how impossible it is for most human beings to change, and why it feels so unrealistic when characters do it at the flip of a plot point.

Story arcs aren’t about one purpose, one form, one result. These are tools to control impact, to control reaction and hold tension and suspense. They’re the pieces of a story most people don’t bother to look at, but instead, again, hope just manifest by the end. They’re supposed to be adaptable to the story, not force a story to adapt to them, even as they craft the story. There is no final, proper form to reach for, but instead about understanding why something is going wrong, feeling flat or lacking impact. They’re the place one looks to problem solve a bad or boring book, a diagnostic tool, not a predetermined shape.

It’s essential to recognize these aspects and understand the orchestra you are trying to control, the music you’re trying to create. Each piece is going to ask for something different, is going to get its solo or contribute to the background ambiance. A wind instrument shouldn’t be treated like a string instrument; it’s not one thing. You’re not looking for a formulaic shape, but what that piece needs to be for the story exactly in that moment.

Creating impact out of plot

Story arcs allow for in-depth thinking and then plotting of elements of the story that can otherwise be missed and not developed to their best ability. And it’s in the complexity of that, or the simplicity that one breaks such complexity down into, that really gives power to story arcs. Stories aren’t just about things that happen, but instead about how people are impacted by things that happen. Places are changed. We want to feel an impact in the world as a result of events in a story, otherwise, how does one truly measure an event?

How does one measure the impact of something that is supposed to feel valuable to a character or monumental to a world, without reflecting it somewhere in the story, be it through their behavior or motivations changing? It can’t just be reflected in the plot, an A + B to C to hopefully = to D sort of thing. It has to be reflected in the environment of characters and settings. Even in emotional atmospheres. Story arcs can help you plot and measure the impact an idea has on the story, and I think that’s truly their power.

Brainstorming as part of the process

So how? How does one turn ideas for story into arcs that can be used to help progress and develop a story from start to finish? Honestly, the process of looking for story arcs in your ideas and fleshing them out is the best form of creative brainstorming one can do for story, especially when you’re looking in a way to ensure that these concepts are seen and felt by the reader and in the story.

For myself, organization is essential. Story arcs aren’t necessarily clear ideas that distinguish themselves from each other, and as a result you can lose track of them and fail to show them and resolve them in the story. Something that started out so important could suddenly be erased by a key plot point, or the moving of a scene and fall flat. Suddenly loose ends are forever loose, not just unraveling plot points, but making characters look two-dimensional and uncaring, making plot lines look completely unrealistic because they don’t have an impact. Where something that was built up to be impossible or enormous in impact is suddenly so easily overcome…

Yes, you can claim that was a character having character development of something to overcome a problem, but if you lose track of showing these points and making them feel believable, the reader has no reason to believe what you’re presenting to them. And if you miss out in fleshing a character to their full potential, the reader might not care about anything happening at all because there’s no representation on the page of these events having an impact on another living being.

Don’t assume reading comprehension is the same as mind reading. You have to write the story.

It can be easy to understand that writers need to convey details and visuals for readers when describing foreign worlds, futuristic technology, or magic, etc., but writers can forget that readers need that same guide when it comes to emotions. There is no reason to believe that your reader is anything like the character you’re writing, and if they’re not, if they can’t relate, you need to find a different way for them to relate to the character that isn’t the characters traits, behaviors, and situation you just assume are universal. You have to find a way to humanize a character to people that won’t understand that character, and that’s the importance of character arcs. Not just growth and development, plot points laid out in a row that you’re ticking one after the other as one progresses, but humanization of the character so that the reader can care about the events, can care about the character’s emotions as they’re going through plot points.

You can usually tell the difference when someone is going through a writing system, following an instruction manual to write compared to someone who has learned who their character is and is putting them in the story. It’s the difference of writing a story and building a story that challenges characters to grow. There’s more heart to the second type, engagement, where everything feels important because it’s coming back to character arcs and measurable growth. Instead of plot points which are just the choreography, pushing the character through the motions so the story can happen.

This is why I combine story arcs to include those character arcs, and include character arcs with plotting a book. In understanding that character growth and humanization makes a story impactful for readers, you change the way you look at stories in general. You’re suddenly not there about a series of events viewed through the eyes of a soulless narrator, but instead about characters you care about as you check in to see how they’re coping with the series of events.

Fucking how already, yeah?

So I explained the importance, and showed how focusing on story arcs can change someone’s writing in really intense ways. So how does one do it? Well, it’s really up to you.

How do you organize your ideas on the page? Sometimes it doesn’t start on the page. Sometimes it can be post-its, or note cards on a wall. Scribbles on a whiteboard in color-coded markers. I enjoy surrounding myself with stories and ideas, transforming my environments into a part of my brain. But because of my new visual limitations and how chaotic my plotting process can be, I’ve had to create tools on my laptop to mimic what I would do in real life.

There are already tools out there, digital ones, that might work perfectly fine for people. I personally love Scrivner, of which I’m dictating this post into, because of its design to nest and organize text, but it’s not great for this particular thing for me. I’m also a big fan of Scapple which can color code and create visual blocks of ordered text and images in a web/brain storm shape instead of a linear shape — but I don’t really enjoy all the fiddling involved. There’s also plotting tools that will plot your points on a line to create the illusion of time as an aspect of plotting. Those ones in particular don’t really work for me, but for some people really need a very time focused organizational style for plotting. It’s really about finding what works for you and experimenting.

For right now, I’m mimicking my Post-it style of multicolored post-its with notes written on them. My notes get to be far more extensive because I’m doing it on the computer and have created the element to give me the things I need, instead of limiting me to the constraints of an actual Post-it. Depending on the order I set, my story arcs will graph onto a model based on time, or based on the character and time, or whatever I really want at the moment, because what a writer needs when it comes to plotting a story changes in the moment.

Random tangent to rant

I’m sure it’s clear at this point, but I’m not a fan of writing systems. I’m not a fan of someone following an instruction guide thinking that’s the way to write, because rarely is creativity or any kind of development allowed within a writing system. It’s a reverse engineered plan focused on hitting points, metrics, as the essence of the story and turned into a pattern of plot that needs to be resolved. Nothing else. And when you’re focused on hitting those points, it’s very easy to lose sight of what makes the story actually interesting, what makes a reader show up, what makes you show up. If you’re showing up to follow a formula for some other goal at the end, you’re not showing up to write a story and figure out what the purpose is for it all.

That’s not to say that all formulaic writing is shit. It’s just to say that when new writers are following a formula, they’re not learning to write. There learning a formula. It would be like comparing it to solving something with a math formula. When you’re handed the formula, you’re not taught how to problem solve to reach that formula. You’re not taught to understand the ins and outs of how to get to that endpoint. You’re just handed the shortcut without the experience, when it’s the experience that allows the shortcut to make sense.

It’s not a system. It’s a process…?

Anyways… There’s nothing special about writing story arcs. It can be done on post-its and note cards or paper or laptop. It’s as basic as brainstorming your story, and then breaking down those ideas and plotting them into little bite sized points that you then organize in a way that works for you when you think about your story. It’s making a spot for impact, for motivation, and connecting plot to characters and their motivations as events of impact instead of “things just happening.”

I don’t even think of story arcs as having a beginning, middle, and end, because there comes a time when you need to define what the hell beginning, middle, and end even mean in regards to the transformation of character and plot. (how many pieces does one replace of a boat until it’s a different boat…?) That kind of nonsense is not helpful in plotting. It’s not helpful in brainstorming to demand any rigid structure. Story arcs are a theme to explore through a piece, a way to connect characters to the events of a plot. Organized well enough so that you’re not missing important stuff while in the weeds of writing.

The nice thing about writing stories is you get to say a problem is resolved, instead of out in the real world where most problems hang there, being coped with, no definitive beginning, middle, and end. It usually satisfying for readers for problems to be solved, and cathartic for the writer. But that doesn’t mean that’s how you have to write a story. Your readers might hate you, but many people don’t write for their readers, but for themselves.

At least knowing the story you’re developing, and presenting to the world will be far more clear and done better if you bother to build story arcs and take the time to break it down and organize and ensure that each part is felt.

Right. How.

Because I do look at story arcs as plotting not really in time, but measured in impact, that’s how I write my notes for them. There will be a title or label to express the gist of the story arc, and then a note of information about the brainstorming process for that story arc. Why it’s there, what you want from it, possibly what you’re hoping to resolve or what sacrifice must be made.

Story arcs don’t always come with a solution, but instead they’re just full of the drama of a moment for a character. You have a very cool idea that you want to develop further, and ensure that it ends up in your story, even if you don’t necessarily know how to do that part yet? Make a note, call it a story arc, and develop it into something that works.

So once you have that story arc, for myself, I create editions so that everything to do with that story arc is connected, and I can’t lose track of anything. I need strong visual organization for my brain to thrive when it comes to writing conceptual text. So I color code, and make sure that main idea holds all those smaller ideas that fit into it. Then it’s about breaking down the story arc, brainstorming where these pieces are going to come up and how it’s going to reveal an impact on the characters, on the environment, on the events. Which scenes these pieces of the arcs are going to hit, and why.

It’s just notes. It’s just brainstorming. There’s no magic to it. Even how I organize is just whatever is easiest for me. It’s not a magic spell or special ritual where if you follow all the steps, you’re guaranteed a perfect story. It’s just essential design work as you take the time to develop a story, and it doesn’t need anything special.

No end form to reach for, no bs you must do it this way. You just have to work on developing the story in a way that you can track and ensure the impact is connected to the characters and their actions.

Character driven means acceptance of chaos.

If you fail to do this for plot, you risk building an intricate, exciting maze with plot twists and daring car chases, only to drop a dead cricket in, hoping something exciting will happen. (I don’t know why the cricket is dead, but it happened in the most boring way possible, promise.)

If you’re plotting out your character arc next to that story arc, or better yet, you just create plot arcs that are character driven, you don’t have to worry about being the kind of writer who makes their character jump through hoops for no apparent reason, and the character obeys because they’re boring and have no motivation beyond that the author has put them there to react.

Even with a little life in them, you don’t want your character to just be a mouse in a maze of your creation, simply hunting for cheese. Domesticated. Knowing everything is going to be fine if they follow the rules. You want them to be fully fleshed out, fighting the maze, fighting being there, fighting the unknown author who would dare drop them there in the first place, having emotional reactions that translate to behaviors that have them doing things like burning the maze down — something an author would never have designed — as the character goes and makes a better story.

Your characters need to be more impulsive than you, more motivated than you, and have no care about what you want in this process for them to drive a story, otherwise it’s just redundant and gone to plan, another heist movie where they tell you what they’re going to do, and then they do it, and maybe they kill a throwaway character, and everything’s okay.

You can’t have something new when you’re not allowing it to happen. Rigid structures of book writing preventing change, prevent adaptability. Something wild can only happen if you feel daring enough to let it. When you have an adaptable structure to maintain in regards to story arcs, allowing you to keep tabs on motivations, behaviors, impacts, tension, etc, you’re more willing to let the story become something better, something outside of the formula you find all those other stories living in, because you can see that it’s not pure chaos. The characters can still work in this change, and impacts can still look realistic and genuine to the moment.

I have so much to say about this topic, but I don’t feel like killing my eyes editing anymore today. So yeah, that’s that for now. Enjoy my enthusiastic lecture from a writer who can’t get their shit together enough to get back to writing beyond talking about writing. I’m sure it’s totally motivational.

I’m truly passionate about this topic — it’s everything about writing to me, the problem solving, the orchestration of trying to create an impact in a reader. And it’s fun. Loving what you do is damn fun, and more people should find what they love in what they do.