Moving

Hi all, I’ve decided to start fresh, but didn’t want to delete this blog entirely. You may find my shiny new blog (that I’m still setting up and haven’t written a post on yet) at wildwaterscorchedearth.wordpress.com

I’m tired. I know that’s not news, being a spoonie and all. Just, it’s at the forefront of my mind most days. That I am just so tired.

Last week my kid took a book off my shelf. This isn’t new, she seems oddly fascinated by my Japanese textbooks and workbooks, and I’ll frequently find them scattered about the floor. Maybe she’ll mix things up by grabbing a couple novels.

This time she took one book, brought it into the livingroom, sat it in front of me on the table and walked off to play with something completely unrelated. It was literally the only religious paperback on my shelf. Grace and Mercy in Her Wild Hair, a book of poetry from the 18th century Indian poet Ramaprasad Sen.

I’ve been meaning to read it since I bought it, but it was a little startling. One of my friends warned me that the Hindu gods are really obvious, but uh, wasn’t quite expecting someone to hand my 2 year old a book while I wasn’t looking. My daughter hasn’t had any interest in my book shelf since!

It’s a good book. Not long by any sense, 65 pages of poems, but they are definitely the sort that speak to you. Relatable content, as it were. There are a lot that essentially go “hey ma, wtf, are you even paying attention, I need help and I know I can win with your help!”

That’s kinda how I”m feeling. Just in general, much less health and financial-wise. I had more to say but my brain is just rolling in fog.

 

Who is devotion for?

The Road, the Walker, and What Comes Next

Devotion, as it is applied to pagan and particularly to polytheist religious engagement, is characterized as intensely loving, passionate, and may have the features of romantic love. Devotional practice – the expression of these feelings in behaviors, actions, decisions, thoughts, and problem solving within a distinctly religious context – is characterized as similarly passionate; after all, devotional practice rises out of these intense sentiments, right?

No.

Not necessarily.

Some of the discussion surrounding the boundaries that delineate devotional practice and devotional engagement from other types of polytheist religious practice erroneously assume that action follows sentiment, that one’s religious inclinations and behaviors arise from emotions that are already present within the worshiper.

This model of emotion preceding action is, perhaps, cultural; certainly this model is based in the way we culturally imagine the experience of love. That feeling, that spark, leaps up inside the body without us asking it to; something…

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Starting Thoughts: Why

Whenever anyone starts a new relationship with a god, there’s always the question of Why. Why do you want to interact with them? What are you looking for?

For a lot of folks at least one reason is “they won’t leave”.

Not always a bad thing, but ya know, they won’t leave.

Kali won’t leave. I’m not complaining, and it’s not a bad thing. She isnt pestering me, harassing me, or anything like that. She’s just *there*.

I should have asked myself Why when I left Christianity a lot more in depth than I did. But it was 2012, I was barely 20, what did I really know? My reasons for getting into kemeticism were fairly childish, but luckily Anubis is not a jerk and took me in. I know I mentioned recently that he firmly and clearly said “I will not answer you until you clear with Kali”.

Fairly reasonable response, and I had inklings such a thing was coming.

So, now I’m asking Why.

With kemeticism I liked the sound of it. I liked the basic tenets and ideas that most practitioners agree on. I was curious and interested in the gods. I didn’t really like much else, and I didnt have enough knowledge of Hinduism or research skills at the time. Honestly I didn’t think I belonged in Hinduism or had any right to look into it. Too much white people b.s. and I didn’t want to be that person adding in to it.

Anubis was an “easy” choice. Every devotee I talked to said he was friendly and accommodating, though quiet. Besides, jackals!

I am suddenly reminded of a quote from a new age-y book I had on psychic abilities, the author was describing a friend who couldn’t hear her spirit guide, and the guide said she was too busy with her nose to the ground looking to actually hear. Apt.

As I said, my reasons for kemeticism were not particularly mature or thoughtful. Meanwhile, there was Kali literally everywhere. She dominated my Facebook for over a year, coming from all sorts of people, even on my deviantart and twitter. It was baffling to me at the time. What could such a scary goddess want from little me?

She’s no longer so blatantly obvious, but she is always there. Finally caving and doing research last year and this year has revealed a lot about her nature. It’s a reversal of my insight into Anubis, whose soft side I saw first and ferocious side i saw later. To be fair though, I only knew of Kali’s ferocious side and that’s why she appeared that way.

This is where I say that part of the reason I’m interacting with her is cuz she won’t leave. I’m not complaining, I am seeing her nature and trying to make sense of it. She has yet to fully answer why she’s stuck around or been so patient (or maybe im just dense), so I want to know.

I am a selfish human though. I want a god I can trust. Not that I didn’t trust Anubis, but I had no guarantee that he would be available or could do anything. I guess that could be due to interference, but still, sometimes he just wasn’t there.

I want a god I can ask for help from and be reasonably sure I’ll at least get a yes/no/maybe/wait.

I want a Faith that has some clarity and structure to it. Kemeticism is great but i am not the most self driven person. I have mental illness and chronic illness and a toddler and husband and household. I dont have the spoons or desire to make up my own rituals or do intense research to build reconstructionist ones.

I’m tired, I am tired and I need help and I need love. I didnt get that from Christianity, as desperately as I tried. On heaven and hell I swear I tried. All I got was shame, manipulation and abuse. All I got was being told I wasn’t good enough, pure enough, humble enough. Not once did that god reach out to ease my pain, to speak to my mind or heart, nor did he use any church member or family member, nor any other adults whose job it was to try and help or protect me.

I spent years suffering under brutality and emotional and physical violence. I cannot, I cannot, I cannot.

So, my Why, is that I am lonely and longing for what Christianity failed to give me. A God that cares, that cares about my pain and sorrow and is big enough to do something about it. Who will cut away the wretchedness that dogs me and comfort me, but will also help me grow with compassion and grace.

I think back and wonder about things. Kali always came up when looking at Hinduism, and maybe I’m just imagining it, but I kinda see why people finally find their Mother or Father and go yeah, you were always around weren’t you?

Anubis was kind and looked after me for a while, and I appreciate that and he’ll always have a place on my shrine. I think though, it’s time I go where I belong. New Journey, woohoo

Kali

I see you standing there
Grinning ear to ear.
Fangs out
Sword drawn
Demon head in hand.
What have I to fear?
You aren’t here for me
Not to destroy me
Or harm me.
No, just to cut down my enemies
Obstacles, fears
Wipe away my tears.
When I’m ready
Will I ever be?
I’ve been courted before,
You’re not the first
Or perhaps you were
And I ran
as a child runs from their mother
when it’s time for bed.
I know the feeling
my own daughter flees
Cries and stomps her tiny little feet,
Waves her tiny fists, and screeches,
As if to say “how could you? I’m not ready!”
Sometimes I let her run around
Just a little longer
Or give her a toy or game to play with in bed.
But eventually, it doesn’t matter,
it’s time for bed
for a bath,
it’s even more important when she’s unwell.
So I see you there.
I’m almost ready.

Fallen, Like Leaves

Three weeks ago, I had a dream. It wasn’t even a whole dream, a short vision I guess. A flash of Kali’s face, of fangs and a devil-grin. The kind you seen in manga and anime.

Devour your enemies.

Swallow them whole.

I am with you.

Crush and destroy and dance on their bones.

She didn’t precisely say this to me. Just a feeling I get whenever I remember the flash of her face, of her blue skin and black hair and teeth that crush demons and mortal alike. I’ve told her straight up. She scares me. I’m sick and poor. I don’t want to start anything I can’t maintain, and I’m having a hard time finding reliable sources for how to worship her. I don’t have a lot of energy, I have no spare money, and the reliable sources I can find all spell out labor intensive things that need a dedicated space. I also have a toddler, and so any space would need to be above her reach.

I’m having a very hard time. About 10 days after that dream, I had a big flare of my symptoms. It lasted more than a week, I missed four days of work, I even went to the ER. That was more for having an excuse than anything. They treated me incredibly well there, which was a plus, especially considering I’ve been treated poorly at any ER I’ve visited for my neurological symptoms. I even got a whole spine MRI. Not that they found anything, that would’ve been too easy.

So I still have no answers, and these symptoms are lingering. My beloved Zolfyer (I know, he’s never on wordpress anymore) is trying to remind me that I’ve recovered my functioning from big flares like this before. I just, I have a feeling that this may not be the same as those other times. I’m trying to hold out hope, but it’s hard.

Honestly, I’ve been going through waves of despair recently regarding my health and my religio-spiritual practice. Especially this week. See, my job is in jeopardy right now, and we can’t afford for me to not work. I haven’t been employed long enough to get FMLA, which I need to protect my job from being lost due to attendance (since it’s hard to go to work when you can’t walk) and they are giving me a hard time about disability accommodations.

I was just reading Satsekhem’s recent post Stasis and I just relate so much. It’s literally everything I’ve been feeling spiritually. Dead, stuck, hopeless, helpless. I’m not sure where to go next, and I no longer believe kemeticism is the path I need. I still love the netjer, very much. They helped me and looked out for me a lot, but, and I’m sure somebody will tell me it’s not about me, but them, that worship isn’t supposed to have strings attached, but I need my gods to help me more. No matter what, it’s hard to focus on them, and do for them, and pay attention to them, when my physical survival is being threatened. When my mental health is trashed and I have to look out not just for my physical and mental well-being, but that of my child and my fiancé.

Right now I just feel like my life is a shitstorm. Every time even the smallest thing goes right, it’s followed by a cascade of bullshit. If Kali can actually do something about it, I won’t reject her, much as she makes me anxious. I know, somewhere, that she wants me to learn to stand strong and that it’s ok to rage and thrash as long as you eventually stop. I have spent my entire life being told that it’s wrong to get angry, to have a strong opinion, to push back and “be disrespectful”. I’ve been forced to swallow my resentment, my fears, my anger, my dignity. I’ve been labelled arrogant and told that I don’t know everything that constantly accused of thinking someone is stupid or beneath me. I’ve been forced to do things I didn’t want to, or that I wasn’t ready for, chased with rage that I would dare ask for a break or a rest because “it’s for my own good”.

I thought my dream of her was about work, and to some degree it is, but I am starting, only just now, to realize that it’s about more than that too. I’m not ready for that, because that’s a backlash I can’t handle right now and I still need that person’s help. Those of you who follow me on other media or have been with this blog for a while can make a good guess at who I’m referring to. It’s frustrating.

I feel like a stepped on leaf. Shredded and beat up and tired. Dirty and dead and losing color. I don’t know what to do anymore. If I lose my job, what will I do? “Look for another one” is obvious, but do you have any idea how hard it is to be disabled and look for work? Especially when your disability seriously affects your attendance? Like, if I didn’t have to go down six flights of steps and walk to the bus, it would be fine, but my apartment complex is the opposite of accessible. There’s steps to a landing, to a step, to the front door. Then, you have to go down steps or up steps (in my case I live on the top floor, the third floor) to get to any apartments. It is not possible for them to retrofit these buildings, and none of the buildings are accessible. I don’t even know what kind of work to look into. My resume is all patient care. I can’t run after a kid with special needs, I can’t work easily as a medical assistant, and that’s all my resume is. That is my entire work history outside of some retail experience, and it will be a cold day in hell before I do that again.

I’m surrounded by darkness, but I guess I should learn how to navigate the dark and take shelter in it. At least, if her behavior is any indication, Kali is with me.

Devour your enemies.

Swallow them whole.

I am with you.

Crush and destroy and dance on their bones.

Why I Dislike the ISA and Why I Think it has Failed

crippledscholar

International symbol of access

I hate the International Symbol of Access (ISA). That symbol that is intended to indicate spaces built to accommodate disabled people. It has however fundamentally failed to promote the accessibility that it meant to signify. If anything it has fostered misunderstandings both outside of and within the disability community. The symbol is tellingly often referred to as “The Wheelchair Symbol” and that is unfortunately what far too many people–disabled people included–seem to think it refers to, wheelchair users.

The ISA was and is intended to be generic in reference. It is supposed to be a symbol of access for disabled people. It is not supposed to prioritize or define which needs are accommodated. It is as much for me, an ambulatory part-time mobility aid (a bioness L300 or an AFO) using person or any other embodiment of disability as it is for wheelchair users. Unfortunately, people often look at that image…

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In Which I Ramble and Make No Particular Point

Let’s get the normal stuff out of the way first. My kid is finally eating solids, though I’ll admit it’s not much, but she’s actually trying foods and eating them. She still nurses entirely too much and I know she’s bored but I’m much better at entertaining older kids. Being a parent is tough for weird reasons. I was in physical therapy for eight weeks and it actually helped, and then they discharged me and so now I have to self-motivate to do my exercises at home. I haven’t done any. In the meantime, I’ve got an appointment to see an ophthalmologist and my ears are being weird. I’ve had problems with both ears, but the right ear in particular, feeling stuffed and painful for a while, but lately I’ve felt like I have trouble hearing sometimes. I’ve also got to make appointments to get some imaging done: MRI of lumbar spine, ultrasound of thyroid, and I need to visit the Dizziness and Balance Center because ten years of dizziness deserves its own specialist apparently.

Moving on.

I’ve always had this issue of wondering if I’m daydreaming or astral-ing. When I was a kid it didn’t really matter, but it’s like, where is the line? (Trick question, there is no spoon)

I wondered about it specifically this evening because sometimes my “daydreams” change rather abruptly and can sometimes go someplace entirely different than where I was directing it. It often connects to some of the work I’m puzzling out Over There and today’s redirect connects possibly to a fuzzy dream that I can’t remember nearly enough of. I was also discussing this with a friend and my assertion that my writing is supposed to help me with my work Over There somehow. I had an idea today but I’m not sure where that will go. Mostly it’s to deliberately write what is happening in the astral. Give it more direction than what I can typically accomplish in dreams. Perhaps trancework or meditation or something.

The other thoughts I’ve been having lately revolve around Kali. Honestly this whole thing with her is causing me stress. She’s from an entirely different culture, and that culture, the people who created it and live it, and She herself, deserve the respect of me adhering to it. The culture is so big though, and I am sick and lazy and exhausted. I can’t even worship the netjeru properly. I want to. I want to worship her and Anpu and Aset properly. It makes me sad. I feel like I can’t even try, like there’s no point. I feel like I shouldn’t even ask Her for anything.

Being sick sucks. Capitalism sucks. I spend half my day working to come home and have four hours with my kid, where I struggle to give her attention and entertainment because I’m worn, and struggle to see my physicians. And I still have to feed everyone and clean (my bathroom is disgusting and you only can’t tell because the tub is pink) and go to bed. Thank the gods Zolfyer is not a chump and cooks and cleans.

Back on topic, I know that a lot of astral work tends to start with self improvement. TheTwistedRope is currently going through therapy and that has popped up in my head multiple times recently. I don’t know what I’m going to do about that. I can’t afford therapy, I can’t afford another specialist. It’s 35$ per visit to see my specialists. I spent almost $200 in November and October on specialists. I’m spending another 35 next week. I also just don’t want to. I make jokes out of it, of having All the Specialists. I use it to empathize with patients at work and let them know “hey, it’s ok, it sucks but you’re not alone”, but I hate it. I absolutely hate it. I despise it.

I lose my mind a little. I saw a post on tumblr today that was entirely too real. A relatable post about psychosis, or something. Too many “lol yeah” reactions. And another one after that. Now, to be fair, I have a lot of friends on tumblr who suffer from dissociation and psychosis (I myself had derealization and dissociative episodes in severe depression), but it just….ironically makes me paranoid.

I know some people who have essentially done some “therapy” with their gods and I get the feeling that’s the angle one of Them (or all of Them, those three have always pushed shadow work) is going for. I know for a fact that my spiritwork is about healing, specifically healing Dapper (he’s got enough strength back to run around thank the gods), partially since he’s right in front of me. Learning to heal others tends to require healing yourself, or at least knowing where you’re broken and how you break, and I know that from watching Ekunyi do her fantastic work as a counselor.

Winter always drags up the ghastly creature of depression. It hasn’t got a full hold on me, but oh how it loves to jump up and bite me. I know that I’ve still got unhealed trauma, though part of that is I still have it inflicted on me. Being sick is a trauma in itself. I’ve never been the pinnacle of health, the epitome of stamina and whatnot, but man I miss my body from before high school. I never wept for my youth, slapped and punched and verbally poisoned out of me. Parts of my brain are still stuck there, still run away, or lash out viciously, at least in my head and behind closed doors.

My body is driving me nuts this year. Having doctors continuously tell you “I can’t find anything.” “Your tests are normal.” “I don’t know what’s wrong” (and those are the kind ones, the ones with compassion and bedside manner, rather than the ones who deliberately tell you, through your chart or implied, that you’re crazy and nothing’s wrong) makes you doubt. God and goddesses above I wonder every day if I’m just doing this to myself. Is it for attention? Would everything get better if I got therapy? Surely that’s cheaper than seeing five specialists. What am I going to do if the next test is normal too? Why can’t anybody find anything? Why isn’t any of this working?

I had two tests recently looking for vitamin deficiencies. One came back normal and the other came back low. So I’m getting treated for the low one. I desperately wished for the other one to be low too. It’s easy to treat these. It would make most of my problems go away. I’m not getting any better even treating the one. I’m crushed. I really am. Do you know how easy it is to treat a vitamin B deficiency? I could do it myself, or ask my coworker. But I’m not deficient in that, only in vitamin D, and that just requires a once a week supplement for 8 weeks, followed by a regular supplement. My life with my health has never been that easy though.

I know it’s normal, but in so many things I don’t know what I’m doing. I don’t know where to go, or what to do, or how. I see myself getting pushed to go back to school for social work, but honestly how? I cannot quit my job for school, I barely see my kid as it is and I am sick and fatigued. I often stay up entirely too late so I can spend some quiet time with Z, if only to watch some tv or listen to him rant at his games with his friends. (I find it comforting and mildly amusing most days, though sometimes I wish he’d stop playing sooner so he wouldn’t get so worked up)

I wonder sometimes, if I could just will myself better. Rheumatologist thinks I have fibromyalgia, but that doesn’t explain everything, but my neurologist can’t find anything either. I’m tired of looking, but I know average diagnosis time is 10 years for most chronic diseases. It’s only been three. It’s disheartening. I find myself hoping my gods forgive my weakness and negligence and comfort me. I don’t feel worthy of it, so I often don’t ask. I wonder what’s the point sometimes. I feel like I’m walking in darkness sometimes. I guess that’s why my daydreams are so often about a traumatized person getting pampered and loved by someone with unending patience.

I know Z would do the same, but I’ve never been very good at communicating what I need or am looking for. He’s not a mind reader. Although apparently he’s getting very good at hearing when I’m thinking! Maybe he’ll be a mindreader in another eight years!

I’m going to bed now, I’ve rambled enough and only partially got my ideas for astral crap out of my head. I used to be good at this writing thing, but lately I feel like my brain is full of heavy darkness, semi solid and hungry for my words. It makes me feel stupid and looney. Guess I am depressed after all.

Decisions and Health Update

My health isn’t significantly worse than the last time I wrote on here (knock on wood). Mostly just more persistent, pronounced weakness, that apparently greatly dislikes stress because it often gets worse when I’m anxious and running around. More muscular pain and joint pain as well, and the numbness and paresthesia are now in all four limbs, though it doesn’t affect my arms and hands as much.

 

My neurologist still doesn’t know what’s going on, she did another MRI of my brain, and did one of my cervical spine, zilch. Now I’m trying physical therapy and trying to get in to see a rheumatologist. Physical therapy assessment posits me as having hyperreflexia, balance problems and a couple other things. It’s nice to have objective proof that something is wrong and I’m not just crazy.

 

The last month I’ve been struggling with some decisions though. I very much want to go back to school, but I’m not certain about it. I can’t do another round of health breakdown, fail/drop out. I would be crushed to face that disappointment, waste of time, energy and money, again. I really want to be a nurse, but I’m no longer confident that I could finish a program. I was thinking of doing an LPN program, they’re typically a year, but even then. I’m not even sure there’s one that I could do evenings. The ones closest to my residence are day time, and I work a full time job.

 

I started thinking about social work or psychology/counseling. Yes, they need a master’s degree, but I imagine that’s less intense than nursing school. I’ve also been doing research on being a nursing student with disabilities, not that it’ll matter if I can’t get a diagnosis before next fall. At least if I do social work I can start in the spring. I like mental health care and just helping people in general, but I also really enjoy clinical work, which is why I like being a medical assistant. I don’t know what to do or how to do it. I just really need a clear, indisputable, unignorable sign about which direction to take myself school wise.

 

In the meantime I have been considering how best to set up my house so I can start my practice back. With a toddler I want to be careful about smoke and low lying objects, but I also need it to be low spoons, especially since Kali is deserving of my attention and I’m sure Anpu has work for me to do. It’s hard trying to find resources on culturally correct, low spoons, low budget (cuz I’m broke and can’t afford to not eat offerings) worship of the Devi.

Big Changes

I mentioned briefly in my last post that there’s a lot going on for me. I started work full-time as a medical assistant for a large hospital network (despite being fairly rote I am delighted with my job). Zolfyer just got hired full-time at an insurance company, which, while not being his field, makes him happy because it’s with one of his best friends. Now, for those of you in the know, this is totally the fulfillment of one side of a bargain.

In March I had a dream of Kali smirking at me. I’ve mentioned before that she’s been stalking me for years, and if you’d seen the smirk you’d have done what I did. Alright, fine, I’ll stop being a wimp, what do you want? We can do this.

She was fine with that response. She was winning. I told her, if you can get me and Zolfyer jobs, good jobs that’ll enable us to pay all our bills, including our loans, and still save, I’ll worship you. I’ll do it as properly as my poor, chronically ill self is able, in a way I can actually keep up with. I’m not doing it halfway, so we probably will have to compromise, but that’s the deal.

Well.

Here I am.

With jobs and trustworthy, cheap childcare, and it’s looking like our new home budget will be more than enough, especially if we get into this one apartment complex we’re after.

So now I’m trying to find reliable sources on the lay worship of Kali Maa, preferably with accommodation for sick folks.

And you know what? I’m delighted.