A Year After Survival (Trigger Warning)

It was a year ago that I was sitting in that place, full of filth and disease. It was a year ago that Anthrax threatened my flesh and my mind was as damaged. It has been a year since in desperation I misdialed the number that lead me to finding my current apartment where I met my case manager who shares my name, where I escaped not just the first but the second bad carer, and where I began to heal. It has been a year.

It has been a year of utter devastation in some other ways. It has been a year of great loss. Death has haunted me my entire life from being forced to help my father kill on to the loss of every pet Grandma ever took in to shelter for us or my mother helped rehome, the death of my best friend, the death of Nymph, and the deaths that I felt uncomfortable mentioning. That would be the deaths of allies in advocacy, some of my heroes, but death has been here. In some moments I feel death is mocking me for living by taking everything that is important to me. I think that’s grief. I know it isn’t the actual facts as death is merely a part of life but my feelings do make it ache.

It has been a year of distance. I have started to step away from people that would perpetuate the year of Torture, people that do not understand this is not normal or healthy. Or family that does not respect that I damned well have a right to live in peace without being treated like a monstrosity for not doing things their way.

It has been a year of tears. I have cried more in the last year than I have in most of my life, yet this is a wonderful thing. Though it means I am wounded and grieving, when have I not been? I cannot remember any moments without pain until the last few years of my life and this year has held a majority of good.

It has been a year where I have admitted I am in love with someone. I have been for a very long time, albiet against my will. I love myself. I love Sprite. I love Rose. Still. Death doesn’t cancel out love. I adored and loved my little Nymph friend. I love M my friend. I love. I love. I love.

It has been a year of hope. I started to dream again, not the literal way but the hopes and dreams of a life beyond struggling to make ends meet, a life beyond this desolate place where I have never been able to leave. I hate New Mexico, and I always have. it has been a year of great achievements. Partly because I am still here and kicking.

My 26th Birthday is approaching and I am going to have people over to celebrate. I feel strong enough. I feel safe enough. I still want to flee this place. Yes it has been a very hard year. What year isn’t going to be hard? I have a laundry list of illnesses and disabilities, I have a mind that just won’t shut up, and I honestly cannot imagine life without a challenge. I truly think it would be boring.

This year I have learned some things about myself…

1. I have a very interesting life. More so than many people have. My life could be a great work of fiction, it would make a great movie series because each year holds enough action to make Harry Potter wish he had my level of danger, daring, and doing. I would still not wish this life on anyone but I also wouldn’t change it. My life has never been boring. I cannot say I haven’t been bored, but it’s been a very long time and that’s why I stopped enjoying school that first year.

2. Love. I has it. (Imagine a lolcat saying that if you would please.) I have always been capable of great love, like all my emotions when I love someone animal or human it is with all of me. There is only a set of extremes inside of me, so my love is extreme and comes with a side package of loyalty and trust. You can of course get rid of parts of this but I will always love you once I did before. I love my father. The evil bastard. I am still glad he is dead. I love my mother. The pathetic damsel in self imposed constant distress. I am still not going to invite her in, as that’s the rule with vampires of all varities. I don’t love my grandmother. I never have. She has always been a caricature of torment to me, even when torment was normal and acceptable in my world of Hitler fanatic parents and abuse. She’s always been worse than my father. I will sadly always love my exhusband. The thing is, I will love who he appeared t be not who he is. I will love the love of my life who knows who they are. There are no caveats there. I will love them and there is nothing anyone can do to stop that, even myself. I did try… I will love Sprite forever. I find the idea that she is my furry wife or soulmate, the wife thing starting as a joke about the supposed women’s duties which she does. She feeds me, clothes me, holds me and satisfies most of my needs but not the carnal ones is accurate. I glanced at her just now sitting in my new wingback chair and she looks so sad right now, and we both are because… I will always love Nymph. Even though she is gone and even though I had to let her die, I will always love her. I will probably always love the next companion Sprite gets. That happens sometime this month.

Yes, a year of love. I will always love myself. I didn’t used to. Even through the years of survival and struggle, even being “better” than the text books tell you someone with my level of PTSD, disabling, even with Autism, even with taught body hatred (fat, not blond, not able enough, just not good enough for anyone (Thanks Mom!)). Yes, Even then I never quite got the hang of looking at myself and seeing a person of value. I came close, a few years ago I started to get there most days. For the majority of this year I have loved myself. When puking from pain and or illness? Check. When unable to shower for two weeks because it hurt too much so I ended up wanting to claw my skin off to make myself clean? Check, that’s why I didn’t let myself lose my flesh to my fingers. Even when I felt it was my fault irrationally and that somehow I deserved being penned in a room and starved and raped? Yep. I still felt beautiful and at peace. That one really threw me for a loop. I haven’t felt that the abuse is my fault for most of the time since this started. The nifty side effect is, I don’t see ugly people anymore. The majority of people outside my door or online or people who aren’t movie stars are all stunning to me. Movie stars hate themselves usually, they abuse themselves and that does uglify them to me. Self hate isn’t pretty.

I love.

This has been a year of food. On my birthday I am going to make (with my carer) a food I haven’t let myself have for three years. The last time I ate it was when my ex was a fiancee. Penne Rosa. This decadent dish is my favorite. It pwns lasagne. I didn’t even notice I had deprived myself of it. I did so out of anger with myself, so I must forgive and eat the deliciousness. It’s expensive to make and very rich food. It’s something I learned about when I was a chef. Yet despite depriving myself of Penne Rosa without acknowledging it subconsciously I have eaten very well this year. This last year has the advent of Meat Cake into my life, the flavor is very rich, it’s not salty but it isn’t plain. It’s meat cakey. It is the most delicious savory food I have had in a while. I consider pasta’s sweet. I have reclaimed the Quesadilla. Despite living on them for a year, two months ago I found they no longer make me want to puke. So snake food is a go. I have had the advent of the Dilly Bar into my life. Butterscotch or cherry please? Some of the changes are based on the local area discovering Gluten Free, so I now can have bread or pizza at my whim (and ten dollars total ingredient cost, not twenty for cardboard). I also started only eating food that tastes good. THis happened in January.

This has been a year of the evolution of appearance. I stopped hiding under horrible black hair. Black hair is great on other people, and I can pull of the sickly goth look with it but despite being Goth, looking like I am dying isn’t something that feels right. I like being on fire, not literally since we’ve been there before, but with my red hair, my fierceness showing in my eyes and rich red lipstick. I figured out that anything I wear is goth. I am a goth. I am wearing it. Still not a fan of blue though. My war against only wearing black was lost. I feel comfortable there, I feel sexy. I still do wear other colors, mostly reds and greens. Still. Despite trying to listen to what other people said my fashion identity won out. Some of the evolution is the loss of ballgown length skirts. Wheelchairs don’t like them. They like to eat them. So I must streamline my tastes. Alas. Alack. It’s a bit fun actually. I also started wearing black eyeshadow more often. I am still waiting on that corset, it apparently was lost in the mail and the company I am working with is not getting repeat business. That’s been going on for over a year now. When I get it, I still want to take those sexy photos. Unshaven lets are sexy.

This has been a year of creative goals. I haven’t been alive enough in recent years to write music, act, create, share. In the last year I have written several audio dramas, some are still in need of work. One is being produced and I have a voice acting role in it. I’ll share when that comes out and it will be free. I am composing a soundtrack for something that should air on most radio stations nationally, potentially internationally. I am writing a book on PTSD. I have had requests for a book on Autism, as I explain both in a way the Nuerotypicals understand, without them thinking (at least supposedly and this is my goal) that everyone with this label is the same. I am writing period. I am considering writing three books at once but for that my head may explode.

This has been a year of discovery. I am discovering it’s okay to not like TV. Sure, I had roommates with TV addictions and that contributed, but TV doesn’t work well with the way my brain works and that’s JUST FINE. I don’t have to be a big TV watcher. I also no longer want to write for TV, because TV and I just aren’t a match. Frankly, that’s a stress relief to admit. There is a reason that after becoming a TV/Movie critic I broke down for a while and had to quit. TV is TORTURE. I get physical pain, and I can’t see for crap so why bother? Audio dramas are more suited to me though some still fall prey to those isms that annoy me, anger me or otherwise fill me with epic disappointment… more often I find that the writers are more independent in their creation, and therefore they get a more “open” piece. The editing work I have faced with mine has been mostly grammatical errors. If there is something that I am told to change because being a wheelchair user who can kick isn’t real, I also learned I can say “I am a wheelchair user and I can kick like a donkey. I just fall over afterwards” and explain the whys, the editor accepts this and lets me know. It’s an open dialogue. Much better than the editors I had when I wrote as a kid. Then again I am an adult now, so there is a lot more respect for me instead of incredulity at my age etc etc etc.

I discovered a wheelchair that fits your needs means if you can walk a bit, you do. I am more physically active with my wheelchair than I was without it. It’s exhilarating. I am also mentally freed of unnecessary pain. I am not sure unnecessary is the right word, perhaps it is treatable pain that isn’t treated? That felt too long and needed qualifications. I have discovered that living alone is best, so even though I am in love and would marry said loved one if it was merely a matter of mind and heart that marraige won’t work unless we get a house with two kitchens and two bedrooms (well… three, Sprite needs one too). I have discovered that people get my jokes, even the bad ones. If I list all my discoveries my word count will be in the millions.

I have discovered that I like my dreams being nightmares for others. Today I dreamed I lived in a sitcom world, in fact I moved in with the family from “Family Matters” though some of them were from “The Fresh Prince of Belaire”… it was great but I was scared. I was scared that they would figure out I wasn’t belonging. I was scared that being not a TV type would get me ousted. I am not sure why my mind selected those shows, perhaps because Will Smith was a childhood crush? Perhaps because Urkle’s awkwardness made it safer? I was still scared and in my dream even wondered if my consideration of what a nightmare is, is different than others. A nightmare means you are terrified. I am not afraid of hoardes of demons but I am afraid of Uncle Phil telling me I am just not good enough. Also stairs but then, I can’t get up them.

I have discovered I dislike most comedy films, as their humor relies on othering people and as an outsider it hurts instead of humors. This of course is well known to many. I have discovered Twilight worries me for the safety of Stephanie Meyer. I suspect she is in an abusive relationship or will be, as her inner soul shows a romanticism of very dangerous things. I have discovered that when Sprite is sad she cries loudly, and I cannot. I don’t “boo hoo”. Just as when I fight physically I am quiet. It’s not ninja as some have accused me of but it is the knowledge that being loud means you get hurt more. I am trying to cry with sound now.

I have discovered that mathmatically based on the sale ads my friends in California have sent me food may be cheaper there than here. Also, the foods I can eat are more plentiful. I secretly dream of fresh strawberries that won’t rot before the week is out. I have also discovered that housing is so expensive there it is beyond my ability to actually comprehend it. There is a literal disconnect in my mind.

In this last year, I have embraced my dreams. I have begun to not fight them, but to let them flow. I learned at a young age to control my dreams, and I wish I had not despite it being fascinating to be aware I am dreaming. I wish I had known I sleep better if I let myself dream about stabbing someone to death. The person is always evil, and I am always saving the defenseless. It is not murder but romanticised heroism. It still scares me, and I wonder what others dream about that they feel is wrong. I have had more sex dreams too. I no longer interrupt those but ride the passions out to see where they go. Usually? Orgasms. It has been a year of sleep. I still face insomnia but I am less tired, less angry, less cranky, and more able to face the world when I sleep and dream.

It has been a year of thought. I have not stopped thinking in my dreams or awakeness for over a year. I can usually sleep through it but as I wrote about before, sometimes it is so bad I can’t sleep. I have always been this way but I no longer tell myself it means I am crazy. Well, I am but I think it’s a good thing. Non crazy people tend to be very dangerous and terrifying.

It has been a year…

So what will this next year hold for me? Will I die before my next birthday (27)? Every year a doctor tells me I will… so far they’ve been very wrong. Will I go a whole year without someone trying to hurt me? I really hope so. Will I write seventeen novels and leave poverty behind and build a castle outside of LA with two kitchens and a cat kitchen? Probably not. The novels? Okay maybe one or two… The Castle? Give me a few years.

Will I start my band? Yes! We’re up to two other musicians now, which is real progress. Will I make my CD? Yes! Will I keep blogging? Yes! Will I get another cat and love it even though I really don’t want to and didn’t even want to get Ny because I was afraid she would die and am doubly afraid now for Sprite and future cat? Yep. Will the cat die? Probably not. Will I ever have that damned yard sale I have been trying to have for a year? Nope!

Will I survive another year? Yes. In fact, I believe in this next year I will thrive. I know for a fact I will begin making jewelry again. I already have. It’s super slow based on my limits but I will make it. I am learning to make chainmaille, and I will have a chainmaille shirt (not made by me, I want it before I am 70), I will go out after dark sometime too. I will have sex. I will buy a glass dildo. Possibly to use during sex but I may be selfish and not share that toy. I will keep going on and on.

I admit sometimes I wonder if I will even know when I am dead because I haven’t stopped. I am a clockwork humanoid in some ways, ticking on and on. Yet the rest of me is in fragments of my imagination. Sometimes I am a barbarian warrior woman, somewhere between Red Sonja and Xena. Sometimes I am just a princess, with the means to protect the people who don’t have enough and cannot fend for themselves. Sometimes I am a demonic seductress. Sometimes, I am a butterfly. Sometimes I am just myself and I am somewhere else.

When I seek out peace, I find it in my mind again. It has been a recent return to that quiet garden in my mind. Now there are new roses growing and new butterfly bushes too. It is still quiet there, this is the only place a lack of music is not a worry mentally. I have missed my secret garden, and I find though I did not tend it, I never really have. It has always tended me. It is here that my glass hearts grow and often break. It is here that my mind is a mix of vines and flowers, towering trees and hollow logs with new lychen and moss growing over them. It is here that the outside world and inside meet. This is my subconscious and it is where I often look at myself, and I wonder. This is a place where Sprite cannot follow. This is a place where I once mistook Heaven. This is a place I have not had for more than a year, and perhaps it was a memory from never.

In the last year I have unrepressed a hoarde of memories. Perhaps they are the demons I slay each night? I am aware of multiple murders by my father, both very similar. I am aware. I have acted. It is a pain, but this is the necessary pain. If I leave these memories buried they will poison me. The little girl that screamed so long is not screaming anymore. She still cries but she is now sheltered in that garden and at times she laughs and plays with the other people there. All of them are me. The orphan girl. The innocent one. I never really knew her before. I know talking of my past identities this way is also what caused people to try and force me to think I had fractured my mind and was dealing with multiple personalities. I finally understand that doctor’s diagnosis. Even my mother knew it was wrong and argued with her, which speaks volumes. Yet, I am aware that each trauma that locked a part of me away killed the previous identity.

In this last year I have been reborn. You have witnessed this birth through my writings and I am aware now that if any flower represents me it is the lotus with it’s many layers and blossoms. I am on a journey through each of the lotus layers of my life. My sensei told me that once and he said that he could not explain it to me but i would understand it one day, perhaps when I was very old but he hoped that I would do so before I was “ancient as the stones”. Remembering him, I remember why I am who I am. He did not act alone in the previous years to shape me but he set this foundation of fine stone. Without him, there would be no Kateryna Fury. There would be no person here. There would be no memories left. I would be dust and ashes long forgotten or remembered only with my mother’s hatred. There would be tear stains and bloodstains at most, no one would notice I was gone.

a hispanic woman stands naked in a black brace a severing wound goes down her throat and torso revealing an ionic column that is fractured in multiple=

It has been a year of Survival. Yes, I survived. Yes I fought harder and harder than I thought possible. I did not fight alone for the first time in my life. I did not starve. I did not hate myself. For the first time that I can remember I do not feel like Frida Kahlo’s broken column. My pillar is whole. It has been rebuilt, not replaced and not forgotten. It still has cracks, yet it is stronger than it has ever been before. I may live alone, but I am not alone.

I also know this is visible to others, though I didn’t think on it or expect that this would be so. I look alive. I no longer am carrying the burdens of forgotten crimes or crimes that i didn’t need to carry. That alone has set me free. Though I am sad at this moment, I am not shattered. My heart is reborn. I am the Lotus. I am the Warrior. I am the Writer. The pen is not mightier than my sword, but it is as double edged and I carry both.

Catnip: Lobo Anime and Comics

Lobo Anime and Comics is Located at : 1016 Juan Tabo Boulevard Northeast Albuquerque, NM 87112

Their Phone Number is: 505-332-0499 (May be updated if this is an old article)

What Makes them so Awesome?

I haven’t had such good customer service as with this shop. Anywhere. Ever. Not only is this one of only TWO accessible comic book stores, but it is one that has windows, treats their customers so well that it is impossible for me to bedrugde them my dollars that I can spend there, and they work with Comixology, a pick up service that lets me do shopping before I send either a carer or go in the manual chair (Gate and Paratransit access pending at the time of this writing).The other comic book store shall remain nameless because they don’t treat people well and their selection also pales in comparison.

They have a website that could use some professional touches, but over all isn’t so bad that it makes me not want to shop there. This is also where I go to see the Batmobile annually. This comic shop is one that I treasure. Not only do they announce their sales with about two weeks notice, sometimes more, but they throw events. This shop is where I met some of my fantastic artist friends like the ArtAssassin (You can and should google him, he’s a fantastic artist and a real sweetheart). Every year on Free Comic Book Day they give more than just comics. I came away from FCBD with a few things I had wanted but hadn’t been able to give in on because of sales, and they also enabled my purchase of a Batgirl statue which is my birthday present to me.

What makes them deserving of my rare praise for a shop of able bodied people? It isn’t their mom and pop status. It isn’t their customer service. It isn’t their accessibility. It’s what they do beyond those things. Every year they sell hot dogs on FCBD, with relish. Which could send me into anaphalactic shock. This year I decided to call in and let them know. Their accomodation of my need was something that went beyond reasonable, they pulled the hot dogs away from the lone ramp (not their fault) and also made sure that there was extra room on the side walk for manuevering a chair since last year my ogre of a scooter made things beyond difficult. Then to top it off the relish bottle stayed closed and as far from people as possible. I still had a little reaction this year but that is because of people eating the hot dogs and daring to breathe. Since I wouldn’t want them to suffocate I took my allergy pills before and during the event and was prepped with several epipens ready to stab me if I needed them.

It gets better. Since they use Comixology and I can pick things up, I often have to call them and ask them to wait a bit longer with my hold items and they always do. Today I called in and they let me know about a minor error on my order (in my favor no less) and this really means that my statue is THERE. Right now. I can hardly wait to get down there (possibly Friday) but this shop will hold my items until I can because I let them know I am having some transportation challenges. My goal once I have paratransit is a minimum monthly trip, because I want to support this shop. This means I will spend about five dollars minimum getting there and home and around five in the store. Okay so maybe two in the store on the Birds of Prey series but my goal is five! I mean a girl has to get her Oracle and Batman fix right? Plus every so often there is a Batman in the store!

For Albuquerque New Mexico there is really only one place for any true believer, nerd, geek, comic book fan, anime geek, or admirer of graphic novels to shop and that would be Lobo Anime and Comics!

(Trust me on this, their prices are also usually much lower than listings on the internet, there is no shipping, and with my rarely met standards being surpassed you know this is THE best shop in the state, possibly the entire multiverse.)

Pictures from Free Comic Book Day 2010 at Lobo Anime and Comics (yes that chair IS as uncomfortable as it looks):

Kat Fury with Iron Man beside her and another Iron Man Behind her. The first iron man is very adorable and is around four years old. Kat Fury and Batman infront of the 1960s Batmobile. Batman has his cape stretched out behind both people.

Silence

This is more an update and this is me totally whining about things beyond my control at once. This blog will be quiet for at least three weeks, any comments in my spam filter will be unfiltered then. I have a pressure sore from my scooter, which means my bright idea isn’t going to work so I should fix it to sell. I did get it rolling but sitting here about kills me. I could handle that normally but there are two huge stresses. Now that I told my family, well those that I felt needed to know I can list them.

1. Medicaid IE AMERIGROUP has decided I don’t need my pain meds, and they are playing games. They did this a year ago but this time they told me to just pay for them. I haven’t solved this yet but most likely I will end up in the hospital, and then I will wind up having to SUE them. That’s right. Law suit. My long term plan is a petition and letter writing campaign to force the state to remove their contracts with Amerigroup and Evercare, because they aren’t doctors. They are a bunch of (censored) people in an office (censored) around with my life. Going cold turkey off of morphine can be DEADLY and I have no choice. Which sucks.

2. No meds. I am not nice with no meds. I am actually beyond mean from pain already and that scares me. I am already dealing with so much crap but I feel like I am about to snap. Not in the fun way that you recover from but a permanent loss of something. I am struggling but I can’t even hold Sprite right now. I can’t think. I can’t sleep.

3. Murder. Yeah. I am dealing with the cold case detectives because (not a real surprise) I witnessed a murder as a toddler and I never forgot and can finally put enough words to the memory to try and help someone know why their father or brother or whomever the hell he was died.Like I said it’s Stress o poaluza.

There’s more but these are the important ones. I won’t reply to emails for a while. I can’t. I won’t answer comments. I already know that the comments will make me feel loved and safe. Most of the time that is the case, just knowing I am not alone. I am not giving up, despite the fact that being constantly suicidal with a chance to die seems “perfect” in some ways. I am not going to let myself die, because I have to allow the family of the murdered man some peace. That’s all that I can focus on right now as a goal. Solve it. Let it go.

When I return I will have a plan of action for how to make my state’s medicaid program pay. My name is Fury for a reason. Greek Furies style revenge feels good, so I am going to lay out my plan and even if it takes me years I am taking them down. They play games with my life and I will make people lose not just their jobs but businesses. After all, they want to murder me. If I do die, I want this post used as evidence for my feeling that this is murder. My doctors prescribed a medication that is COVERED BY THE INSURANCE but the INSURANCE refuses to cover it and refuses to know which hand is up it’s (censored) then it’s murder. They want me to pay out of pocket but I can barely afford food and rent much less anything FUN.

So yes, I am now out for blood. Like I said there’s some whining involved. I am looking into a black hole of pain, and last time I went there I lost parts of my identity to the pain. It’s like a monster I cannot beat. It is a soul sucking darkness. It is there waiting to consume me and there is no way I can stop that. I just hope that I can ride it out until I get my meds again.

Suspenseful Music goes here…

After a harrowing day without the internet (not the cause of the harrow) I finally can post again! It’s amazing but I mostly slept without the net. Yesterday was epically strange. My need for my plan was ignored by fate,cosmos, whatever makes couches explode… and I became aware of some needs. I also found out what I am doing with the Scooter once I get my wheelchair.

It all started with a strange smell and a wheeze. I kept needing an inhaler. I had to actually call my doctor and get another one as mine was so old it was expired (by two years!). So I haven’t been that proactive with my asthma. I hadn’t realized how badly it was effecting me. Debbie the weekday caregiver had picked up the carpet cleaner from the office. We had figured out how to use it, and we started with the couch cushions. The water was black. I may upload pictures of that but off of a single cushion the entire gallon jug turned black. It took THREE GALLONS with cleaning solution to make the cushion clean on one side. It never made it to the other side…

You see by taking the cushions off of the couch it became clear that my seating issue was not just me. I thought it was because usually sitting trouble is just my back. The couch had lost all recognizable couchiness. So we (well Debbie with me just watching) flipped it over. There was an ominous rattle. This turned out to be the death rattle on my couch. We cut the bottom open, to find out what was rattling and to see if we could fix the wood because surely it isn’t that bad a break? My couch had been slayed, and was carrying stakes thinking my butt was a vampire. It was stabbing me for at least three weeks, and I couldn’t tell. I was one stumble and awkward landing away from serious injury.

The other couch was as bad. I suddenly had no where to sit. Also the living room was coated in spikes of broken wood. I retreated to my bedroom door way and directed Debbie on how to dismantle my computer. This is an act of supreme trust for me and for her bravery. She was terrified. Her hands shook. I reminded her I was right there and if anything went wrong she was being my hands. We turned everything off, hauled my computer to my bed and I put shoes on and moved to the scooter to take the rest down. All 9 HDDs, the Modem, everything went into a biiiig basket. The couch was dragged outside while I did this then I had to lay down from the strain.

Once the house was decouched we had to pause, what could we do ? There was nowhere to put anything right? There was no where to sit. Do I live in bed until who knows? Nope! We moved the scooter to a spot on the wall and set up the folding tables as I had planned for the wheelchair. There was some fine tuning but right now when that chair gets here I just have to move a few things around (two chairs and the scooter) and I can use the net, go outside, whatever I want when I want. The scooter chair is not so bad as the couch had been, though I do have to go lay down a lot more. A half an hour of bedrest here, a lounge there. I feel decadent and spoiled even though it’s that or faint and end up on bedrest for a month.

So I uh have no couch, my guests have folding chairs and my living room is full of tables. There’s SIX of them now. (My tables had babies?) I have the lights and wires run in such a way that nothing is aiming for mayhem, and there is even a spot for my pills and drinks. I also am not nearly as sick as I was 24 hours ago.

I have to buy a carpet cleaner now. I found the one that meets my needs, it’s not cheap. This thing is half my monthly income. However, the benefits are I can steam my floors weekly. This means I can also get rid of the mops which are a health risk for me. I can keep my carpets clean. If I spill there isn’t a waiting list to have the floor cared for. No more carpet mold. I can steam my BATHROOM floor. Egads… the horrors of that bathroom floor. It’s had many a nasty on it and that is just with my living here. Oh and the part that has me the most excited? If my chair tracks in dirt, it’s not a permanent issue! I can simply have the floors cleaned. This is not the exact same model we were using but it has some additional features that are worth the price. I also researched costs and brands, and this is the most bang for the buck.

I am wanting to get a steamer for not floor surfaces as well. The same issues apply. My immune system is so weak that I need to be more proactive. I am still researching them, but some of this is also a side effect of my taking Andrea’s suggestion to check into what others with comprimised immune systems do. The biggest suggestions for people with AIDS and HIV are these steamers and an air purifier. I am researching the latter two for best price vs brand and space requirements but I am going to have to spend some money on my health.

I don’t feel the usual cringe at needing to spend money (though I do have to ask for help with these things still). The knowledge that I will be healthier has me excited. My friend Tweak, who ran the fundraiser for repairing the scooter already set up another chip in, before I had realized the needs. I am going to share the link with you all and if you can help please do, if not no big. I already told my mother and a few friends I want them to work together for my birthday for something on this list, because what is a better gift than health? The chip in is here.

Now on to the best news of the year. The biggest news of the day. The brightest news ever:

1. My scooter will be repaired again at no cost to you or me. I made a deal with the repair shop that if I can repair it myself they will cover the parts. This is of course with the snarkiness of “if we cannot surely you won’t be able to harharhar”. I already know what is wrong with it and I can fix it. I know I can. It will take me about three months of fiddling with some wires but, that’s not a big deal because…

2. My wheelchair has been approved. In 10-14 WORKING DAYS (so really 4 weeks) I will have my mobility restored. I am going to have to pay for one part on this chair that is not covered by my insurance but, it’s a whole 36 dollars. I already have a basket, a cup holder, and I will be making the sunshade work for this new chair so I can run free. The insurance didn’t notify me yet, I actually ended up calling them because they changed their formulary and were refusing me my morphine and my skin creams that keep me from looking like a burnt yet raw hamburger. I used the tactic of self advocacy that I don’t share much to get that fixed, and the woman threw in the knowledge of my chair being approved to sooth me.

2b. The tactic I reserve for only self advocacy? New person in the line of people I must deal with when I am aggrivated is told up front, “I am angry, I am aggitated, and I am tired. I am going to end up yelling at you if we don’t work together, and if I think you are screwing around. Then I have to talk to your boss, and there’s paper work and they watch you closely for at least a month because I won’t let up until this issue is fixed. I will call and ask for you every damned day.”

No one wants to be yelled at, and I try to make it clear it isn’t a threat but an inevitability because I am fraking tired and at the end of my ability to deal with the run around so DO NOT RUN ME AROUND RAWR.

I am so excited, I had trouble not mentioning wheelchairs every two seconds in writing this post. I can’t wait. I have to but it feels like Christmas Eve, and if I am a good little advocate Wheelchair Claus will come and grant me unlimited mobility with shiny wheels and comfortable seating that doesn’t make me faint!

Coming Out: a Year of Autism

With the coming of Autism awareness month, it has been a year since I came out as a woman with Autism as a label. It was not a moment planned, it just.. was right. I have known for about two years, maybe three? For me, one of the side effects of my Autism and my PTSD combined is a sort of floating time. It slows, it speeds, it fades, it flares. My sense of time is not very accurate.

I was giving a speech to a small group, and the speaker who spoke before me mentioned something about Autism, and how it was a shame no one with Autism could speak for themselves. This was done before we went on. I rolled up in my scooter and gave a speech about disability. I added the words, “I am Autistic.” I had never admitted it to myself before. The room fell utterly silent, the few whispers froze. All eyes were on me. Faces reflecting what I interpreted as disbelief, some shock, some fear, and one knowing smile. I continued, after a few moments to let this speak in.

My speech altered in that moment, I added more of how my Autism is an attribute. Afterwards that first speaker left without a word to me, they never made eye contact with me again, or really spoke much. It was awkward for them. I suspect shame but I do not care. I didn’t want to hear how my brain is diseased. That was what lead to me meeting up with the wonderful people at Here Be Dragons. (Rawr!) I do post there periodically. I had just begun to read Womanist Musings, and I began to learn that I was not alone in the fight for Nuerodiversity that a burst of temper threw me into.

I won’t forget how I felt like a cartoon, my knees if i had been standing would be at an awkward angle, the light far too bright… The glaring world suddenly foreign, an alien landscape of unknown. For me, being diagnosed with Autism had been merely another label. It had been just another “thing” that built me into a physically fragile, creative and supposedly charming woman. It was just another thing people may hate me for.

Boy do they ever. Jenny McCarthy wants to mind wipe me like some sort of not so supervillain. Autism Speaks wants to cut my tongue out because I disagree with them. I am also proof that they are wrong about the vaccine thing too. All their supposed cures are wrong and full of failings. I never was vaccinated as a child. I showed signs of Autism from birth. I had measels and Rubella. I am left to wonder how much of my health ramifications could be misdiagnosed side effects of these things.

In this last year I spent so much of this time fighting. When I wrote this post I wanted to show a picture of me on my new wheels, my hair back to it’s red, my body back to it’s health. This post is one of the things I tantalized myself with. Where would I be in a year if I lived? Through this blog, which is actually over a year old, I found friends, support, and life. This goes beyond Autism, though my Autism has come to dominate some of what I write about, as I have begun to see that the other advocates for other isms can handle what is going on but Autism needs more help in being fended for.

A year ago my brother was murdered, my then husband had imprisoned me, I was lying and hiding it in terror. A year ago I was starving. A year ago, I thought that my blog may hold my last words. This blog was not originally meant to be so personal either. Through the last year part of my need to survive left me shedding a good deal of anonymity. Renee of Womanist Musings and Kowalski of Here there be dragons both had the largest impact too.

Renee helped me to learn that I can speak out again. I had stopped out of my terror, and she helped me to get that back. I have no issue telling someone they are being racist, ableist, and can stop their derailing most of the time. Renee is a great educator and a great friend.

Kowalski helped me to accept some of my vulnerability. I know I can email either of them if I need to just talk. If there is a moment where nothing else can get me to keep going. Kowalski taught me that it is important to not let my voice be silenced, because with some of my labels it may be permanent. Kowalski also taught me something else. To love me. How? The writings of Kowalski are often a mirror to what I need to face to heal.

I have survived great violence against my identity and person. My right to take up space was violated. I was raped, starved, threatened, and almost murdered. I was worn beyond the brass tacks of my soul. You my readers and friends (there is overlap there) gave me the ability to fix my wheels the first time they broke. Now you get to read about my forcing a new wheelchair out of the insurance. You gave me the freedom and means to LIVE.

I have begun to cry when I write this, and most of it is joy, yet there is mourning. I look at my broken scooter and I think of all the things I did with that freedom, and I think of how closely I came so many times to death. This ignores the fact that I am still fighting suicide. I will win. My scooter even helped William find his new home. He is happy now, I called his new owner and William, who scared me badly towards the end is seen as the best behaved and most angelic feline in the entire world.

I would write even if no one read it. I have blog posts that are hidden away on my hard drive that no one will see, at least at this point. To everyone who has written me using the contact form that sits somewhere on the blog saying I helped you… you helped me too.

As I sit here knowing I cannot ever return to some of my most beloved activities, and in some ways certain types of activism even after I get my mobility back, I mourn and move on. I create new hobbies, new goals, and new dreams. It is no longer life ending to admit that for my own life I must not do the very things that I thought made me who I am. It is no longer the end of my world.

Thank you. I could name more names, but even so there are some names that should remain private. Some people whose names I do not even know who helped me. I hope that the next year my writing continues to help people, including myself. I plan to write more and more. I am still working on getting up to “it” enough to write for the Womanist Musings blog. I may even try art again, new ways new methods. I even plan to find a photographer and set up a photoshoot for who I am, so that the pictures of who I was no longer are the only ones that exist.

Some stats for the last year:

The main page of this blog has had 3,765 individual page views not counting my own

The most clicked on post from around the net is Amazonfail

This is followed by Vanity

My About page is also one of the most popular pages nearly matching the home page stats.

The busiest day for my blog with 591 views came in on Monday, April 13th, 2009

April also was my top month for visits with 3000! However my average monthly page views EXCLUDING April is 1500.

Some search terms used to find me, most popular to least:

The Oblongs

Beth Oblong

Textual Fury

Tracey Ullman

Short Girl Cartoon

Tumor

Kateryna Fury

Ehlers-Danlos Syndrome

“Autism Speaks”

Rules for service dogs

tumor artoon

Albuquerque NM Ehlers-Danlos Groups

Trigger Warning

Carl Joseph (This refers to Carl Joseph Rove, a young man who died as a result of hate)

Murder Kit

Autistic

Autistic “Abusive House”

Tracey Ullman Blackface

Hidradenitis Supprativa

Golfernoggins

“Disability” romance novels

signs of textual abuse

Suicide

how to kill yourself

tired in pain

whatever happened to baby jane

anger cliches

There are way more, I just found these the most interesting or ooooh there’s mah name!

So for the last year and then some… thank you.

The Generic Title that Misses the Feeling

How can I title this blog post? There is no title sufficient for what it is that I am getting to write about. I am home. I am free. I am safe.  No, it is not perfect but a perfect life was not what I pursued. A safe home was. I am sitting on my couch, in my living room, looking at my cats and the art on my walls and all I feel is this burning sensation that is a mixture of relief, joy, and grief.

I grieve for what was lost. The sanctity of love itself is no longer something I can cherish. I may find it again but I will never truly heal from the betrayal of my heart. In fact, this betrayal has given me new layers to my PTSD. Simple things, as those of you who have PTSD know, can trigger it and I must learn my new triggers. Foam Cups. They make me curl into myself and want to scream. I know the reason but that doesn’t make it any better. Time sheets. This one is a problem as I cannot escape time sheets even though I can escape foam cups. I will adapt, I will heal, and I will grow.

I do not know how to explain it but the grief shrinks by the second. William has not run into a wall once here. He did attack the cable guy, who rolled the attack off without harming William and with a smile. I really had a most amazing cable guy. He was patient, he didn’t make me feel unsafe, and the cats response to him was something he found amusing instead of upsetting. He even moved a piece of furniture so it was out of my way. Not his job, he just wanted to.

I have my ramp already too. The last place fought me tooth and nail and refused to put it in. They won, as far as the ramp goes. Little do they know that there will still be an investigation by the Fair Housing people. I may be moved but the investigation will reveal much. The ramp was put in last night, and this means I can go out and in. Right now using the manual chair is hard but it is freedom. There is so much to say. I spent the last week without anything to do, my mind is in a frenzy to be used for more than imagination and organization.

I even dreamed nonsense happy dreams. No nightmares. I actually slept more than five hours, despite my bed not making the trip in one piece. I have crashed on the couch and I do mean crashed. Until two days ago the instant I was alone I would fall asleep. I am still exhausted, the bone deep type that seeps into your marrow and leaves you loathing the waking world for having energy. My bed will be put up tonight. My friend M replaced the mold filled mattress and broken bits, my mother is bringing some strong young people with her and they will fix it.

My mother has come through for me, in such a way that it surprises me. I wonder now if the Zillas our mutual attempts to communicate, or if I am setting myself up for heart break. I think it is both. I cannot however turn down much needed help. Nor will I. My mother’s own trials continue and I can help her if she will allow it. There are specific ways too. I have not fought my last battle either, the place I am living may have fair housing violations, though I managed to get what I needed. If there is discrimination it is based on Race, and I suspect this has been confirmed by my needs being met and others who happen to be another color being denied. It is sad, but, I am the ally of the truth. The truth will come forth, and that is the best that can happen.

I am bouncing from topic to topic again, my poor mother didn’t believe me about the mold inside my waterbed, and her work crew tried to siphon out the water, and now one of their number who sucked that moldy water into his mouth is very sick. I feel sad for him but I am surprised that there is no guilt. I did tell them so. They wound up dragging the mattress outside and cut it open to find it was worse than what I had suspected. I wasn’t there for that but each of them was made sick by the smell. My new water-bed is going to be treated with care, so that it lasts forever. The mattress isn’t gold this time either but is green. I look forward to sleeping on it. No pressure on my body just the softness of a warm cloud. That’s what a good water-bed feels like to me, my pain may even vanish for the first few nights. Perhaps it will vanish forever, as the bed will not harden with mold. The mold had almost burst the other mattress, it was that bad.

I am eating real food too, not just making ends meet. My foodstamps card arrives any day now, perhaps even Monday. My mom brought me Bacon when she heard me mention how that was the first thing I would buy, so now, I am free. As my house comes together I find that my sense of tension is receding, more so now that I have an outlet for my mind. That was a slow torture, I tried to hold it back but when my book reader broke, I was suddenly trapped with just a cellphone for the world. Still, most of what helped was the fact that I could sit outside. No sunshade, a bit risky for my health but, I needed some sun. It’s been five months since I could just be outside without an excuse or worse was trapped exclusively inside.

My mom promised to help me get my garden set up in the Spring. My rosebush and tree need some love, but they will be well tended. I am also going to grow my own strawberries and I was considering pansies. There is much to do before Spring is here but I can dream about it, little flowers all in a bright display right there just for me.

Too this is the start of preparations for Halloween. Today I bought shoes for Winter, I found an amazing two pairs of shoes that fit and then went to the Dollar Tree, a true dollar store, that carries the same stuff as Walmart. There I bought a few decorations for my favorite Holiday. My faith also allows for Halloween to be a very special day. I am going as Snow White. There will be pictures. I can also get my corset now that I am moved, and curtains. I also have enough room in my living room and bedroom for more art. I am going to someday get Nene Thomas’ art for my home. She’s my favorite Artist, I found her work when I was younger and was hooked. I have other favorites but she is the foremost, and her work is also not all that expensive. Some artists want 100 dollars for a print, but I can get small prints for five or ten dollars. How smashing is that? Something that if I budget wisely I can afford.

I have an electric bill now too. I have bills. I cannot hold back the glee that bubbles in me. I have bills! I have almost everything I need and there is little that I want truly. My wishlists already seem outdated and overly full. I need a blender, I should get a recliner that helps me stand (replacing my couch that broke last night) and maybe another book shelf. That is it, excluding wheelchairs.

I even have a big screen TV, it was here when I moved in. I found a windchime in my boxes of stuff too, one I thought long broken, and so I even have music in the wind. There is so much that I am getting rid of, I may be able to cover the blender after that sale.

I will write more later, I have to write a How To with caregivers, as there is some information there. I am changing agencies, and that will be the source of more knowledge. K my wonderful caregiver and I exited the honeymoon period. The change of Agencies shouldn’t cause me to lose her however. We worked out the really minor issues and the main stress with having a caregiver has to do with the paperwork and scheduling. That means I can leave that over with someone else and be much calmer.

Now I plant the seeds in my soul, for my soul and heart are entering a glorious spring after their long winter. The seeds will grow into happiness, joy, and a further understanding. I will share the fruits that come from these with the world as I have shared all I am and know. The changes that he wrought will only make me stronger and my inner garden more beautiful.

New Logo Poll

Simply put, we’re going to vote on the logo I make you look at every day. I like them all so you get to decide. These logos are copyrighted to me etc. If you want to use them talk to me and we can see.

So here is how this works, if you like one put the name of the image in a comment, you can list up to two in the comments. If you can’t find the name just try and describe it.


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  • Polls

  • Ye Olde Archives of Fury

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