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.

The Unknown Terror (Trigger Warning)

I don’t know that this post will ever see the light of day. I can’t tell you what it is about. I have secrets after all. There are a few things I don’t write about here on Textual Fury, and yet since my life is an open book here that seems at odds with the reality of who I am. Some of these things aren’t posted because they are too scary for me. Some because I don’t have the words. Others, because if I post them I am painting a big target on my head for hate crime.

There is a moment in time that is haunting me. All of the things I have shared with you here I can handle. I handle them just fine. This moment is one where I can’t break it down. My brain doesn’t have all the information, and it doesn’t want it. I don’t want to know. I do want to know. I need to know.

This great unknown has haunted me since I was small. The images and memories around it are reminders to never talk about it. My father looming over me, telling me to hush. Telling me I will go to jail for life if I tell anyone. My terror. The nightmare I prayed was just a dream. It never was. This nightmare is the source of a lot of pain. Institution time. Self mutilation. Self hate. This nightmare, this nagging doubt that it was just a dream is the reason I tried to kill myself that first time.

It’s the reason for a lot of the self inflicted ills. It’s the reason I stopped fighting to believe myself and started going along with the lies of normalacy. It is also one of those life altering moments. She who was, that first me, she broke the first time then. You see this encapsulates the moment that innocence was lost to me.

I want to talk about it but now, I am having to talk about it with people who can do something. I think my brain, as damaged as it is, holds the answers to someone ELSE’s suffering. My brain holds the keys to someone else’s closure. I feel guilty that I can’t fit it together.

I can’t control my access to the memory yet. It’s fresh. It’s like an abcess that goes down to my soul, rotting away at my self identity, self confidence, and my ability to feel as if I am worthy of making a difference. It’s effecting my sleep, which I just got under control. It has always been there. The great nothing. The great terror. It’s lurked, since it occured.

Hallucenations I was told I had, turned out to be memories. PTSD. Post Traumatic Stress Disorder can at times over lay past events on the current. The sensation of blood on my hands. The emotions involved in this memory. I can tap them at any time, but there is no context. Or… there hasn’t been.

The memory is like a damaged film reel. It melts if I try and grasp it, but when I cannot handle the details they come pouring out. I want to warn my family that I am about to bring a shit storm into their lives. I want to. I don’t think I can. What if they don’t believe me again? What if they see that I am vulnerable? This memory and any dealings I have are a straight shot to the most vulnerable part of my core, of my psyche. Every time I check the email account set up for contacting those who I must I shake.

I tremble.

I cry.

I feel like it is happening, and more information comes each time.

What if I go to jail for not remembering? Can I? Maybe? I don’t know. To get those answers I would have to say something about what it is.

I have done countless difficult things in my life, but each time I take a step forward onto the cracked glass cieling of my life, I wonder if this word, this moment is when it will shatter. I do have things to lose. I do have a life. Am I throwing it away because of a nightmare? What if it really is just a nightmare? I can’t turn off the doubts. I can’t turn off the pain. I can’t let it go.

I have to do something. The something may destroy me. If I don’t do anything, however, I will always have blood on my hands.

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!

An Open Letter to the US (Trigger Warning)

Dear Citizens of the United States of America,

Don’t tell me Nazis are not in the US, actively working on killing people withtheir virulent hatred. I have met them. Don’t tell me that other hate groups don’t exist. I am tired of hearing other white people tell me that what I have learned by listening to black and brown people is not true. I am tired of hearing that what I have seen for myself is not true. My ears and eyes may see differently than yours, but this does not mean that my being aware and having known a bonafide Nazi, a man proud of his loyalties to “The Great Adolf Hitler” isn’t true.

Don’t tell me that because we are in the US we are safe. The WE in that statement precludes immediately every minority group. If We are so safe then why do people die in the streets, murdered out of a hatred based on who they were born? I have known many great people but yes, I knew a Nazi. A man that was not born in Germany, though his father was. A man raised with the beliefs of Hitler. A man I have written about and how his hate of all things lead to my own destruction. My own memories of being murdered over and over again yet not dying. My own tortures.

My father taught me about the Holocaust, or I never would have learned about it. My father did something my US Education didn’t. Education here is a joke, because we only teach the “comfortable” history that makes Whitey look damned good. I am a white woman. I was raised to believe that you, if you are black, must die. I do not share this belief but I wonder if this has shaped the life I lead, I wonder if it has shaped the lives of my siblings. I wonder too how my mother really thinks. Is she too a Nazi sympathizer secretly wishing that Hitler had won his evil campaign to slaughter an entire culture?

For me the entire idea of race itself is racist. Racism is the only word I have that fits into that slot. I don’t believe Race is anything outside of a social construct to belittle, demonize, dehumanize, and wrest unfair power from others. It’s highly effective propaganda that we absorb greedily. We in this context are white people, people taught we have no race. Sorry. I do. I am white. Yes, I see skin color. I can’t not. I am aware that even if I were to go blind my knowledge of how race works would not change. My goal is to prevent this vision of color from being one of hate.

I don’t recoil from a black man walking down the street. I do a white man. Guess why? The white man is the one that has hurt me. The black man, the asian man, the hispanic man? These are the men that have saved me. These are the man that I see as protectors. Of course I am aware that any male being has the male privilege factor going for them, but that doesn’t preclude whiteness’ existence as a terrorist organization since the inception of an idea for Othering people.

My father, the Nazi. My grandfather I never met? A Nazi. The lie I met as a child… the hatred I saw. The acts of hate that I took part in because my father wanted me to feel things. I unlocked a piece of the mental puzzle. For my entire life I have had a flash of my hands, my bloody white hands dripping with the life blood of a man. A flash of murder? A flash of guilt and pain each time. What have I done? Why don’t I know? What horrors am I capable of.

The flash has had no age imprint, nothing beyond “Murdered him.” Him. A black man. Blood stained hands and a probably dead body. What do I do? Who do I tell? I told someone once and was locked in a seclusion room for three days, at least I think it was three. There’s no time there, just hours, just meals, just an aching terror that if I ever mention this moment again I will go to jail or be murdered for it.

My father the Nazi, socially was considered a great man. He was the type of man that people liked. If they were white and racist. Every church I ever went to? He was the sort they wanted. Every sermon any minister ever gave? Racism racism racism. The black demons are people who aren’t evil. Just black. Just torn from their ancestry by our hatred of the other. I cannot not claim it.

The imprint changed, that little memory. I know what happened now. My father was telling me all about the holocaust while we stole things from a man’s store. This is when I took the hammer. That image of stealing against my will, it has always held for me a more horrible feeling I never understood. My father, the nazi. He taught me to salute, he taught me to be proud of my ancestors for eschewing their Jewish heritage. My father, a son of a German Jew who was willing to sell out his neighbors to hatred to have his judiasm expunged. Who was betrayed. Who was still loyal to a man that when finished with the Jews would target another race, and another until we were extinct. Genocide is species extinction.

The owner of the store heard him tell me how great Hitler was, and how it was good to kill people different than you. My father was whispering but apparently we were suspicious. I remember the look of revulsion on this man’s face. I remember his words. “Hitler was evil, what the hell are you teaching this girl?” The words are burned into my memory forever. This man was black. I was immediately afraid, not of the man but that my father would hurt him. White people, your children FEAR your actions.

My father did hurt him. The details will be spared you but not me. I will see it in my mind forever. I will see him lying there, bleeding, and I will hit him obediently. I will pray to any god that will listen that we get caught. That my evil father can go away. I held on to those words, subconsciously as seeing someone die like I truly think he did haunts you even when you can’t remember the events.

My father. The Nazi. My father the civic leader. My father, the church Deacon. My father, a white man deemed as close to Godly as a minister. In my mind that’s spitting in the face of your god. My father the liar. I found out he always knew where his family was eventually. The lie that we had no family was broken when his brother visited. My uncle, the Nazi. We were screened, tested to see how closely we resembled their desired package, their desired little beasts of murderous evil.

My siblings are blonde haired, green eyed, thin, white. They were given points for being born with the right looks. I am short, my hair is red, my skin is very white, my eyes are blue. I was told then my mother must’ve been a cheating whore for me to be imperfect, despite the fact that really I look like my father. My father the Nazi. My father’s ideal person is the same as Hollywood’s. White. Blonde. Blue eyes are best. Hollywood, fully embracing that same ideal person as Hitler. Americans, as you call yourself in short hand ignoring how many countries are on both America continents, embrace this. We teach it. We live it. We white people are awfully Nazi like.

I am tired of internalized hatred. I am tired of seeing the look in the eye of a young black woman seeing someone different, someone who most likely will hurt her coming if I am near. I am tired of my skin being a mark of hate. I am trying to change this but there is so much evil in this world that is ignored. The evil is now other. People in the US are never as evil as a Nazi, I hear this all the time. My father identified as one. He was born in Hackensack New Jersey.

So yes, Nazis in the US exist. The US has it’s own violent history of oppression that is along a very similar path to Hitler’s. One man has yet to rise in such a way here but many have tried and keep trying. Are you going to someday have your little son or daughter realize you are a member of the KKK? That’s a terrorist group. Are they going to embrace it too? What if because you ignore race so hard your racism pours out your pores that they become members of the KKK despite your thinking that’s bad?

It’s time that we acknowledge en masse the hate. I am tired of being hated for knowing by whiteness. I am tired of whiteness. I am tired of hate. I am just damned tired of the lies. Teach the truth about the Holocaust, from multiple cultural perspectives not just our “Haha we are the best, no need for any other knowledge!” approach. Actually teach your children, our children, about this dangerous legacy. Stop saying we are post racial. We never will be. We may someday be all equals but since Race was created to control, it has become a marker of social and personal identities. Being post racial tries to whitewash, yes white wash, erase, deny, the harms that we have done by saying “It can’t happen here”.

My father was a Nazi. For me, that says it all.

Yours,

Kateryna Fury

Basic Human Necessities…? (light trigger warning)

Human bodies supposedly have basic needs. Sunlight? Check. Water? Check. Food? Check. Sleep? Check. Social Interaction? Check.

I can’t have most of those. If I look outside when the sun is up my eyes burn. If I go outside and the sun is up my skin starts to blister even with sunblock unless I have a shelter. If I drink water, not just water but most liquids excluding Sprite my throat blisters shut. If I eat just anything? Woops near death or worse. Sleeping? Supposedly four hours a day is not enough but here I am… Dealing with people? I am just out of spoons.

I have been thinking a lot lately, while struggling to muddle through my day, which consists of barely up before the caregiver gets here and down right after she goes most of the time. That’s four or five hours and I start wilting right away. The cause of this deplorable energy drain is related to the constant pain factor but also  how much I have to do just to get to the door to unlock it. I haven’t had any spoons left for a while. I know that this will change with the chair but the pain won’t and nor will always feeling thirsty. It’s a constant burning sensation in my body, my back won’t stop sending stabbing burning aching numbness through out my body. My throat mirrors this same feeling but in a way that my mind interprets with a constant desperation.

I am dying of thirst.

I wake up with this notion daily. It’s terrifying, and it never goes away. There is nothing I can do about it, except put my life at very real risk to try a new beverage or an older one periodically. The only solution? Sometimes I have to have those throat closing blisters for a moment of relief. Sometimes I have to eat something bad for me so my body will stop signalling that it is starving. Sometimes I send my caregivers home early because I cannot stay awake anymore, which hurts us both.

I don’t have any answers, and no one else does either for any of this but what are you supposed to do when the basic primal needs you are taught as a child that are supposedly irrefutable do not work for you? In school I was taught that we humans need shelter, as being in the elements will harm us. I was taught we need sunlight as well as too much shelter will harm us. We need food and a variety of it not just one or two things. I was taught we need fresh, clean water.

Maybe it’s just a sign of the contamination that this world is suffering from? I would rather not be an ear marker for someone in the green movement or as I call it Environmentalism for a Buck. I just want to live. There are times when this sensation of a slow burning death is frightening. If there is a disaster how am I going to live? Washing my hands makes my body burn. Swimming and bathing? same. I started pondering this when the deaths of people during hurricane Katrina were described.

These people were the disabled and disenfranchised, left to die because they were seen as other or less than human. We won’t mind dying of thirst cause we’re just not people. I mind. I also noted that the symptoms that they described of that thirst, the burning throat, slightly swollen tongue, and the sensation that you must claw at yourself just to breathe, for day two of dying of thirst are my constant symptoms. Even writing that I had to grab a bit of my drink because for a split second while the liquid is going down my throat I feel alright.

I wonder too how this will effect my voice acting. Sometimes I cannot talk and I am not sure if that is an issue with the Autism or my body over riding vocals because I am just so THIRSTY. This goes beyond the immune system issue now. I can smell that water is bad for me just like any other allergen but my body still has the need. I am not sure if I should try adding more milk and maybe some home juiced orange juice into my diet. The OJ is bad because of oranges being on the list of things I cannot eat but the juice tends to be okay in small doses. The milk is good in small doses but the doses are both too small to rotate out. I need at least a week between orange juice consumptions and I can only do three days of Milk. It’s still a primary ingredient in all I eat as cheese but we are just talking liquid form.

Pomegranate juice only comes in a concentrate that has been re-liquefied now. I get sick from all the brands but POM, and POM makes me sick after three days too. With that I need months before I can drink it again and who knows what is in it? What if they changed the concentrate? I could die. No thanks.

I am at a point on my energy where I am not sure I can finish reading the healthcare bill and trying to boil it down to just what is important with an explanation for people who can’t understand it on the big stuff. It may take me an entire year at this rate. I finished maybe a fourth of it, but that’s not a lot considering how big this thing is. I am having trouble even making my writing commitments. I WILL keep trying but I am just not sure. What if I am denied for the chair again? My entire life beyond eat sleep and drink hinges on that chair.

Basic Human Necessities: Wheelchair.

Tick Dock Here Comes the Doc

Sometimes things that you don’t think you need can be amazing. I have a new doctor, who can come to me. I didn’t expect to like her but Sprite rolled belly up. If I didn’t know her so well I would presume she loved everyone. She may allow some who are only moderately okay to pet her but no, she’s in adoration of the home healthcare doctor. This doctor has a blood pressure cuff for the wrist that is accurate and also doesn’t leave me bruised. That’s  right, accurate and no bruised. It’s great. I can have an Xray in my house, she thinks my jaw is not broken (yay) but that I damaged the tissues around it. This has caused some funny inflammation. My medications that aren’t morphine (I can get that easily from my pain meds doctor and that won’t change) have been denied. Need an inhaler? Not without going into the office. Not an issue now.

The only issue was trying to remember everything that’s wrong with me. I only forgot six, and remembered by the time we were done. I used my white board to write things down when the words didn’t come. She handled the Autistic things I was troubled by today well. I was unable to make eye contact or even fake it for more than five seconds. I also ate my brunch infront of her and she left with the recipe for Meat Cake. Sprite even wants Meat Cake but I will not share.

There was no judgement, just a bit of surprise at some of what challenges me and a reminder that I only have to go to the ER for emergencies and to call the office first because most of the time someone can come to me. No more immune system challenges! I feel relief honestly, and joy.

Oh hey look two posts about good things in a row! Scary isn’t it? Oogah boogah!

Good Things: Caregivers

I promised on Here Be Dragons to write something happy, and I have lists of good things to write about. The darker issues keep butting in on my happy little blog. I am not saying they are not important but it is important too to look at the good. I just spent two  hours listening to some Lady Gaga, and feel nice and relaxed after an eight hour nap. It was supposed to be just a little lay down time to make my body stop hurting but I must’ve been lower on spoons than I realized.

I have found it a bit amusing lately how many people are stunned that I like Lady Gaga. Is her music perfect?  Nope. Her stage name cracks me up and it took me a long time to decide to like her work. It’s catchy, she is blatantly poppy, and of course as a white woman who has bleached her hair blonde she fits into the societal norms, and her videos often have a dearth of people of color. I don’t know how much of this is in her control but her videos also address issues like domestic violence (Paparazzi does have this element there), human trafficking (Bad Romance), and she has made a video that is blatantly homosexual (Teeth). I think it’s fantastic.

Part of what I am enjoying about my new caregivers is a lack of judgemental behavior. Yes there is some but it is usually to my benefit. We have fallen into our patterns, which I need personally. There are the set daily chores, like watering the bamboo plants or cleaning her Meowjesty’s food bowl. It’s not really to spoil Sprite of course but is a cleanliness issue for me. Piles of rotting cat food are just nasty, and other methods didn’t work for me or Sprite. There has been none of the niggling doubts about my safety. There has been none of the stress that I associate with having a caregiver. Other stres? Absolutely. My sink exploded with sewage and that was really bad. Having a caregiver present allowed me to have enough spoons to get that taken care of. My pipes got steralized too, because of my weak immune system. This is also why all water I consume is BOILED.

I have company coming over tomorrow, and in the discussion of the potential plans for the day I suggested that I may send my carer to the store. She’s already nabbing a tax form for me, because mine never showed in the mail. (Thanks IRS, I can just run out and grab those right? Uh… no.) I know I cut it close, I had multiple requests put in to have them mailed out to me, but you know it just didn’t happen. She asked if I was sure I wanted to be alone with people. She then realized I may have been offended and made sure I knew the why. I did before she told me, but appreciated confirmation.

Why did she ask if I am comfortable being alone with someone here?

Reason 1. I am not comfortable with most people.

Reason 2. I am very private and having people come in usually leaves me feeling poorly and she noticed even a simple five minute visit from a neighbor sets me on edge.

Reason 3. Am I safe? We all know not everyone in my life is the best person and some are quite rancid.

There was a fourth reason but it melded with the others and I forgot the words for it. I told her that I always can change my mind but I think I will be fine. I also made sure she knew I appreciated this. Both caregivers for the week and the week end are aware that they trusted. Sprite hired them both and made that clear too. They screw with me they answer to her. This causes some amusement but they take her trust as seriously as mine.

With both I also know if I need them and we are over hours I will still have my needs met. I am not just a paycheck, but first and foremost I am a person and if I call on them after hours they know it’s an emergency. This was already proven by L, the weekend caregiver who stayed until she was sure that there would be NO sewage pouring out of my pipes and also when she thought I might need to go to the ER. I thought  I might too over that stomach blockage and a few other things. I also made sure that I can text at least one of them if my jaw ever dislocates again and locks down where I must seek help and can’t talk for it.

The schedule on hours is too small, and my caregivers and the agency have agreed to help me petition my insurance for more hours. The increase will likely be by 15 hours more, and that can make a huge difference. I will no longer have just what I must do done but also what I want done. I may even get to see the Bat Mobile this year! It’s coming to a comic store near me on May 1st. Last year it was not there due to rain. Understandably so but, the Bat Mobile IS the Bat Mobile.

All in all, I haven’t had a single caregiver as good as either of the women working with me. Now I have two that I would qualify as the power houses of caregiving. If I ask them to do something they ask how not why. I may tell them why but usually they get it. There is no questioning my food needs, but instead food has become a celebration of my ideas. My meat cake never would’ve happened with other caregivers and I was very excited to get to create again.

I am creating. I am excited. Yes, the depression is still kicking my butt. I know if I need to call for help to protect me from me there won’t be a summary dismissal of need, a dismissal of value, but instead the help I need will be given without pressure to slip away into the institutions that try and suck all humanity up into their vortex of evil.

I get to be a human being again. I’d forgotten what this was like.

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