Wednesday, March 12, 2008

Up and down, crash and burn: nightcare to job hunt to darkness

Okay, today was a bit of crash and burn mostly because I couldn’t sleep as I lay in terror of my night worker when it was revealed after I lost the ability to speak and wrote “I talk too much: come back 12:15" in print and found out.....my night worker couldn’t read. I am not sure if it was a literacy thing or if her eyes were so bad but she was just sort of guessing on many of the words and Linda said my block printing was better than my normal writing. So, finding out you have a non-literate night worker who is a chain smoker and has pretty much shaken you down for your keys to go for a smoke because she is jonesing for a smoke (she isn’t EVER supposed to leave the apartment), is kinda scary. I told her, if you leave, I won’t let you back in (because I didn’t have digit control so I could use the phone). She was at the point of waking up Linda to get the keys for the front door. Plus, she was sent to me because she was “specially tasked for oxygen” but didn’t recognize an oxygen canister OR a concentrator.

So, after I tried to unsuccessfully instruct her to straighten out my legs in bed, I lay there terrified that I would wake up half paralyzed. Then I would only have an illiterate and un-medically educated night worker (she didn’t know what blood pressure was…for just one example) who already indicated it wouldn’t worry her if I died to rely on. Then about 6:00 am I realized that she was sleeping in my book study, where I have my entire life collection of books, most unreplacable but to try and replace would cost between 50,000-80,000 for the core of the collection (it might be much, much higher as I have shelves and shelves of books worth over $500 each, as there are only 100 or 150 copies, several of my books are unique including one which is the last of two copies left in the world). Well, what is a $500 book worth after someone has smoked a cigarette next to it? It is called “a reading copy.” So here I was terrified that she has ripped my heart out metaphorically and when she came in the morning, I could smell her smoke 20 feet before her. Linda said the room was full of smoke smell but we couldn’t find a butt, so I told Linda to tell her to go (and she rushed outside for a smoke). And we started airing out the room.

I then called Beacon Home Care. They couldn’t find me on system. I told them I used to be Juan De Fuca. And they transferred me to a scheduler I know. I asked if it was in my file that I have respiration issues and cannot breath independent at times. She said it was. And that I used oxygen? Yes. I asked, is it normal to send a chain smoker to someone with respiratory problems because I can’t breath with my diaphragm and if my little clusters in the lungs close up any more, I won’t be breathing at all. She was frustrated and apologetic because Beacon has just picked someone and sent them just because it didn’t say NO SMOKERS in the file (if they ever read it). I mentioned the reading problem and how she didn’t know about oxygen AND tried to leave me at midnight to go smoking (hey, I pay you $200 to make sure I am alive in the morning, you don’t get to leave, okay!).

Well, due to the five hours of sleep I was a little hyper (I have Bipolar II and stress and lack of sleep can cause a slight trigger) so I went to Triumph to find out that, the government of BC is not going to hire anyone from Triumph – they won’t even return phone calls. There was some irony in the government PAYING Triumph to find PWD’s jobs and then refusing to hire any. Anyway, I was given (wait for the surprise) the contact of some disability organizations to apply at. I told them I was happy they would still see me after the BBC piece. The manager looked blank. I said, I wrote extensively about your “behaviors” program for the BBC, it was the second highest received piece in BBC disability history? She said, “Well, it wasn’t anywhere big.” (she said that without irony, BBC=no exposure) I said, that I guessed she didn’t see the piece in the local magazine either. Nope. Okay, no problem. Anyway, I went out and decided (little manic remember), to apply for a job at EVERY running store in town (of which there are MANY) due to my decision to attempt "ironic job applications."

So I started with the The Foot Store. They wouldn’t even accept a resume. Then I went to The Running Room. It required going down two stairs to get into the store, which I did backwards with the chair. I told them that I had 12 years in retail, five in management and I had worked for Sports World. They said I could hand in a resume. I asked, “For staff or management?” And the woman googled at me like I had hit her and then said, “STAFF!” Odd, because in my retail experience, getting a bunch of assistant managers was always a priority because you needed people to do the end day money bookkeeping, stock ordering, etc. Someone reminded me later that often people assume that if you are in a wheelchair you are a bit DIM. Ahhhhhh!

I asked the woman at the Running Room if she could think of any other running stores to apply at, she suggested the New Balance Store, and I told her that store wasn’t high on my list as it had multiple stairs to get inside. She told me the owner of this store owned that one too. I went out and of course could not get up the two damn stairs until someone came and gave me a bit of a hand.

At Triumph I asked them straight out, I said, “You list outside that you are an HR company but I researched you, you have ONLY worked with people forced to search for work off welfare before this. You don’t have a job pool do you?” And I was told no, they don’t have a single job there.

So with the Tin Cup Cheryl gave me, I was thinking of going back on Thursday with a sign in front of Triumph “Need Money for Resume at Real Temp Agency” But like I said, I was a bit high, and these ideas seem better when high.

At home I slept many, many hours and then like all things that go up, I ended up a bit down. Which is why it has been exceeding hard for me to write this. But writing is the dedication against the confines of emotion. I wanted to finish with a highly rated Trailer/Teaser I posted before of Elfed Lied, an cult hit anime about girls who are a genetic mutation (they have invisible extra hands and extra little ears). These girls are tortured, abused and driven insane by the government and the population for being different. The Red Head was tortured by people before being captured by the government where she was subjected to tests and abuse for years before freeing herself. She has two personalities, the psychotic one and an innocent, and though the help of a childhood friend, the only person who accepted her, the two personalities are trying to become a balanced person. The younger short haired girl is the daughter of the scientist who runs the facility, even though he trains her to be a national weapon, but when she is hurt, he teaches her to use her invisible limbs with prosthetic arms and legs. One very young girl, kept locked up from age of one in a steel cage is totally insane. The trailer is EXTREMELY violent and covers the subject of sexual abuse, physical abuse, bullying, and its psychological effects. I, of course, recommend it highly (I’d call it my bio, except I never got special powers and no one came – no one turned back time for me). Shiva and someone else was looking for this one.

I am sorry this post has been much “news” and not much art. Right now, my personal feeling is such that the question I keep asking is “What sin could I have committed to pay for so long?” Or rather, “Is the sin of my existence the cost of suffering to me and those around me?” Which will tell you where my head is tonight but yeah, I know it won’t last forever and I have to fight it.

You can leave now if you want (as in, this isn’t going to be happy) and maybe I told this before but when I saw the movie Superman (dates me huh!), I became totally dead inside, in fact it is one of the movies which still makes me extremely angry. Because Superman turned back time…..turned back time, for just ONE person. As if there weren’t others of us waiting, hoping that someone, anyone would come for us, and Superman comes for ONE person. I think that is part of the reason that even now, even as the crip, you don’t ever want to threaten Linda. Not that she can’t take care of herself but I have always felt and fought my demon, well with the exception of a few seconds here and there, which my therapist says isn’t sociopath behavior but actually controlled events within strict rules. I say differently because while the person might have provoked me by trying and continuing to hurt me intentionally (and yes physically), they did so because they knew nothing better, while I merely waited and unleashed a small portion of the calculating beast inside of me – for some reason always at men, I can’t remember if I made one wet himself or not in fear but he never ever came near me again (no it isn’t something I like about myself or am proud of). Do I want you to believe I am a monster? Not really. I cut myself so I never lash outat others. But since Linda is the one person who has been there, who HAS come for me, then even I do not want to see what would happen after. So yeah, dark thoughts. Here is an another AMV about a lesbian couple (she is kissing her with WINE, not blood), I asked Linda which one she identified with and she said the one in red, the Protector. I guess, being disabled has changed things a little, or maybe how she sees me a little too (am I the small, fragile one?). Anyway, happy watching and a happier tomorrow (watch it, it is tres’ good).

16 comments:

Dawn Allenbach said...

*hugs*

Because I know there isn't a damn thing I can do to help except say I'm here to listen.

Veralidaine said...

Hey! Kiddie Grade! I love that show!

Your life just gets more and more... I don't know what, but after hearing about the latest idiocy from care workers and agencies and Triumph and potential employers, I need a stiff drink.

cheryl g. said...

Yikes, very scary care worker… hopefully the scheduler “flagged’ your file so they do better with who they send.

If you get a job does that mean I can hit you up for discounts on athletic shoes? That would be cool…

OK, on to darker matters… is it just my perspective or do you have a rather old testament view on sin and punishment? I’m going to say this and keep saying it in the hopes that you will one day believe it – Your existence is not a sin, you are not a monster, you are a person of worth and value who deserves love and friendship! I also have to side with your therapist Sis. You are not a sociopath. You can be dangerous (as can we all when pushed far enough) but definitely not a sociopath.

I suspect Linda has seen herself in the role of your protector for a long time – not just since you became disabled. You both know each others vulnerabilities and scars and so protect each other from the things that cause you pain as best as you can, thus you both serve in protector roles. Linda’s protectiveness has probably gotten more pronounced in the last year but it’s always been there.

I’m hoping today is kinder to you!

Ms. Pet said...

Hey, have you gotten yourself an advocat? From the BC People with Disabilties or any other organization? Because this is what they are for. To fight for you and your love. This is NOT okay. You being with a caretaker who can't even properly read. And trying to fight it all yourself, I know, it feels like you have to, but there are people out there who do this for us. I don't know if you or Linda have contacted them or not. I know money is tight, but you know, if you can swing it, I'd even go as far as to get a lawyer who can pull the heavy weight, so this can stop. But advocates at least have the energy that you don't to spend on this.

ANyways, I'm not up to date. I haven't been around much with anyone, not just you. Going through my own health issues, moving and the like. And I'm not sure I"m gonna be able to visit, as simply going to R's which is a busride of 1 hour exhausts me and lays me flat. But wanted you to know you are in my heart and I haven't forgotten about you. I'm having difficulty reading much of anything these days and hardly read anything on the web. Just so you know, it's not that I'm not reading YOUR blog, but everyone's blogs, sites, LJ's, emails, etc.

I care for you and you are in my thoughts and heart, wish I could give more right now, but can't at present. *hugs*

Please, if you can get an Advocate, don't keep fighting this alone. There is no weakness in asking for help, only a deeper, more courageous kind of strength. *wink*

Elizabeth McClung said...

Dawn: What, you don't have the power to make people's minds explode either.....darn it!

Veralidaine: Yeah, it is good. And yeah, I kind of need a rest from having "Care"

Cheryl: Well, I did ask another care worker if ANYONE had EVERY been dismissed from thier job at Beacon OR Juan de Fuca and she had to admit after a lot of though that no. I said, hey, Client come and go (we die) but no worker is SO bad they can't be sent SOMEWHERE, right? She said that wasn't so. I asked her, if I was able to walk, with no experience whatsoever could I go into Beacon and have them start paying me $8 and hour to go to caregiving courses for the next 6 weeks and then $19 an hour to work as a caregiver regardless of personality, or lack of other abilities. She hummmed and hawed and then said, "No, they would take you." I wiggled my thumbs and went, "opposable thumbs...seems the only requirement for the job - doesn't that make people who are GOOD at it like you kind of pissed off that these idiots get the EXACT same pay" and she said, yes, it made her VERY upset.

I don't think I will get the job but I will definately give a discount to ALL "family" - Since there is zero incentive to hire someone in a chair and since my resume for the last year+ says, "Doing 15-20 medical appointments a month" - hmmm, might that be something an employeers might NOT want to have an employee doing?

I have an OLD Testament view of sin, which back out because since I failed to fully embrace God and thus love the cock, I am cursed, those around me are curse, my family is cursed, you know - everyone who knows me will be in earthly suffering as long as I continue to live. Just in case you want to grab a pitchfork and torch and head to the castle.

yeah, but I was the "sporty" one, and now she is the "Butchy" one.

Ms. Pet: still awaiting after many, many calls, a return phone call from the one advocacy group still operating in Victoria (the rest had the funding taken away) - I did call the Action Committee of PWD's but I know more Canadian law than they do.

Also, I am not sure what they could stop, Beacon is the ONLY care agency which is funded by VIHA (After they cut saleries by 10%), so there is no other option. I mean, if they kill me, I suppose I could sue for liability, maybe. But considering current law ALLOWS the managers to determine WHICH clients can be DENIED care if there is a shortage of workers - legally, until I have an ironclad case, I am not sure what I can do which won't reduce my care which is actually sent (which is currently, since being "moved to beacon" reduced by 20% though they get the money to take care of me whether a person comes or not).

But thanks for your support. It is not an optimal situation but I am sure, when eliminating the ombudsperson for BC, Cambell was doing it for our good.

yanub said...

I love the idea of you selling shoes. But I think you are wrong, wrong, wrong, to try to sell regular athletic shoes. I see you as a pointy toed, 6-inch heel, super-trendy shoe saleswoman. Stilletos--the athletic shoe for the woman athlete in a wheelchair!

As for your reprehensible "care" givers, maybe it's time to install some streaming video. We can all keep an eye on the miscreants.

cheryl g. said...

If your blood family is cursed I guarantee it was not brought on by you. I certainly don't see having you in my family as a curse. I'm sure Linda will agree with me that knowing you is a blessing not a curse. Whose castle would I be storming?

Ummm, you are still the sporty one from what I've seen and quite frankly neither of you can pull off butch all that well. Linda does have a protector vibe but it's more the mother tiger with her cub than a butch thing. You give off the same vibe where Linda's concerned.

Speaking of butch - let's hang a picture this weekend.

Lene Andersen said...

Have Beacon given you a number where you can reach a manager-type person after hours? I'm just thinking that might help if this happens again. Well, it'd only help if they can arrange for someone else to come at short notice, I guess. Here's hoping it won't.

I think we all have a monster inside us that can become unleashed if provoked in the "right" circumstances. Most of us haven't been pushed far enough. Yet. The last part of your post reminded me of a quote from the book Damage (I forget the author): "damaged people are dangerous. They know they can survive".

I'm a complete neophyte when it comes to anime, but can I just say? I watched the clips, they're interesting, but I kept wanting to take a pair of scissors to their bangs. Why do all of them have hair falling in front of their eyes? Sorry. My inner mom popped out. ;)

(I talk too much, too. Will shut up now)

shiva said...

I don't even know what to say about the care worker shituation... that's INCREDIBLY fucked up. Is there any way to get her blacklisted or something? Or at least only sent to jobs where reading isn't a necessity... i mean, dyslexia is one thing, illiteracy due to failure of teaching is another, neither is a person's fault, but it DEFINITELY isn't right to put someone in a job like that who can't do things that are absolutely essential to the job...

Thanks for the AMVs - Elfen Lied looks pretty cool, if somewhat gory and disturbing (which is not necessarily a bad thing) - looks like it has a theme of "humanity creates monsters by demonising the different" as well, which i always like in horror fiction, so i will try to track it down... actually, i think the *most* disturbing thing for me wasn't the gore *or* the creepiness of the torture/abuse bits, but how childlike all the faces look (to me), even when the characters are adults...

BTW, this isn't for me but for a friend (and i'm probably going to post it on my own blog), but do you know of any representations of physical disability in 20th century British literature? I thought i had read quite a few novels with disabled characters, but it kind of looks like practically none of them are British, which is kind of weird...

em said...

I'm with Dawn, here and listening. Because you matter. *Hugs*

Raccoon said...

That care worker does not come back. Ever. Make sure the agency knows that. If that had happened to me, I would have reported her to the state licensing board. No ifs, ands or buts.

And smoking in an apartment that has oxygen tanks?

(When a friend of my father's went to visit him one January morning, he had managed to bring a 50 gallon oxygen tank that he normally used for welding into his living room. On one side of him was the oxygen tank with a mask, the other side an open front woodstove. And my father, in the middle, reading the Sunday newspaper. Granted, about 15 feet between the stove and the tank, but... He died about two weeks later, in the hospital, of breast cancer.)

BOOKS! Now you're talking my language! I've got some were between 150 and 175 linear feet worth of hardcover fiction (mostly genre), plus the same packed in bankers boxes. I'm always interested in books. Anytime you might feel like thinning your collection, please (please please please) let me know?

And it's still worth more than a reader's copy. Let the room air out, and keep it airing out as much as you can.

Why shoe stores?

Elfen Lied looks kind of cool. And yes, big cleavage. I'm going to have to work on finding the other two that you suggested, The Third and Death Note, as well.

And you didn't try to get arrested this time.

Superman was kind of selfish, wasn't he? I had never thought about that before.

And yes, a very sweet video. Now the questions: what was the music in the two pieces, and who are the characters/what's the video title of the second?

Raccoon

Ms. pet, have you tried having your computer do the reading for you? I know it's a rather monotonous voice, but it might help?

A Bear in the Woods said...

I love that you confront lies and unreality so constantly and unrelentingly.

Raccoon said...

You said that ADV (the American distributor) doesn't do a good job with the subtitles/dubbing -- as in, they gloss over some of the subtleties?

That's a problem. Because ADV has the distributors license over here, a retailer in Japan technically can't ship over here.

I'm going to have to try tracking them down by websites when I can't read or speak Japanese...

Neil said...

Hi, you two wonderful people:

Get a grant from the provincial government, and start your own health care company. That would take care of having to look for work, plus I daresay you'd be better at interviewing candidates than of your current and recent care workers.

Smoking in an oxygen-equipped apartment...much head shaking at this end.

We had a gentleman on oxygen learning to make jewellery at work a year or two ago. The instructor researched the hazards, and moved a work bench away from the torches for him. Wonderful man who died in the last few months of cancer. But he was creative to the end, and he was a social worker who CARED.

You need an ombudsman all to yourself, Beth. You'd singlehandedly overwork the poor fellow. It was to save them from you that Campbell eliminated them, you know.

No, of course it wasn't. But how stupid do you have to be to be unable to understand how to deal with O2???

Books? Rare books? Oh, Beth honey, I love you more every day!!!

Cheers!

Elizabeth McClung said...

Yanub: I don't see why the shoe stores though I would be a bad shoe seller, who else as you point out COULD wear high heels ALL day and still have them look fresh and new at days end? Yes, I do wonder if I should have some recording of them, it is just they LOOK normal....before they start talking.

Cheryl: As for the castle I think it was to burn ME - isn't that what happens to the "ungodly" like in Frankenstien?

Awwww....we're not butch yet. Well, I'm protective becuase I assume people I know are likely as foolish as me about thier health (glare at Cheryl), and while I may have to live with my stupidity, that doesn't mean I have to suffer watching THEM suffer (yes, I realize that is a complete double standard). Yes for hanging a picture!

Lene: Beacon actually only has an answering service after hours. Haha! Great isn't it! The same for weekends. I guess for those of us who get sicker at night, we need to change our body illness schedule for 8:30 am to 4:30 pm to get proper attention. haha.

I like that quote, it is sadly true, I have been working off and on for 10 years on a Fantasy saga where the opposing leader uses a general who is damaged and hates themselves on the basis that the person can be more cruel, exacting and self punishing (and punishing to others) than they leader ever could themselves.

Big eyes, staring through moody bangs. Sigh - will have to send you some anime to watch until us normal ratio eye people (like eyes NOT 1/3rd of our face) look odd.

Shiva: Yes, I think Elfed Lied would be right up your alley, the childlike comes from the Japanese tradition which for the most part, even men don't have facial hair, or much facial hair, but also just the style - I think except for a few characters most of the characters were between 11-18 if that helps.

Your "British novels of physical disability" is a BIG yes in the detective series of the Victorian Edwardian period - like Max Carrados, the blind detective? Furtelle (sic) the Thinking Machine? There were even transgender detectives then. Or is that too far back, are you looking for 1950's onward? If you want I can get a list of detective/speculative fiction of the 1900-1930's with physical disabilities.

Em: thanks for being here on a dark day.

Raccoon: Yeah, not having her back - when Linda gets sleep and I don't because I am in terror of being helpless and requiring assistance, that isn't working.

Books? Genre books? Which genre and what period, I have science fiction back to 1850, and Dectective to the same. Fictional Ghost stories are of course my specialty, but let me know your flavor and let's compare notes (Linda does children's books, mostly pop-ups from 1880-1960's, as well as chapbooks from 1780's up). But I also have about 200 Victorian/Edwardian "Boy's Tales" and SchoolBoy Tales, like, Howard takes the Blue, and all the bizaare titles. A few early tom swifts and girls tales as well and NO enid blyton. Geez, you got some linear feet of books, I have a couple thousand and a few more in boxes as well, maybe not quite as much as you (I did have to thin down when I moved across the ocean 2 years ago to JUST 140 boxes of books).

The second video was called Kiddy Grade (no, not as illegal as you first thing) and the song is Poison by Groove Coverage. I will try to find the second song. Um, the problem is that there are certain things which are totally fine in Japan but completely "not on" here - for example in the childrens film by Ghibli, about giant racoons, they have GIGANTIC balls, which for some reason Disney didn't appreciate. Also, like in Strawberry panic, the older sister who drinks and smokes is 15: while when printed in english and with the Anime, she is 19. And often there is at LEAST one gay/lesbian romance going on in the background of any shojo anime, which gets cut out - the famous example was Sailor Moon, where Sailor Jupiter I think was translated as "a cross dressing man" instead of a butch lesbian who is in a lesbian relationship with one of the other sailor scouts (yeah, in a kids show - I mean, they only hold hands!). So a lot of the sexual innuendo or "crushes" or drinking or smoking or Japanese orientated habits get changed, like when (ghibli again) had Kiki's delivery service they felt that a small child shouldn't be drinking Coffee so they changed it to Cocoa. Not a big deal, but when they do it ALL the time it starts to change what you are watching dramatically.

There are places which review the imports from Region 3 (Hong Kong, Thailand, etc) which usually have english subtitles as well, and rate them on how good they are, you can buy them from places like Discountanimedvd.com which sells both import AND local licence Anime.

A bear in the woods: thanks, I think, being high and then being low helps.

Neil: Actually, when we return from Japan, we ARE going to try for a CISL grant which means hiring all our own staff and vetting and training them for US, loyal only to US. We thought it was going to be too much bother but after one catastrophe after another, Beacon looks to be the disaster.

Well, tobacco is addictive and I realized I was talking to the addiction not the person at one point, but still I am not being paid to talk them down, THEY are being paid to assist ME.

So, what is your book collection? I have some 16th century stuff and about 15 academic reproductions of illuminated manuscrips if you want to the the "old stuff" all the way to little pamphlets put out by Thomas Pynchon (sic) before he became famous (where DID I put those?).

cheryl g. said...

OK, picture hanging's a go and I'll bring my stud finder.

Did you get my last email after I threw up my mental hands in disgust with my phone service?