$23,000 of foot crushing, corsets, my panties and the BBC

Today was a very big day for me as I talked myself pretty much into a stupor with Janet who is now going to be the Olympic swim coach and Ted from Motion as they brought my $23, 000 chair. My GOD! I felt bad, that a family in a trailer park is living without a new double wide trailer because I have this chair (seriously, aren’t medical costs obscene!).

I have been having a lot of memories of Japan, and my trip there because I am helping another wheelchair user right now do some booking of hotels from my blog. So if you haven’t read the Japan section I recommend hitting April 2008 and scrolling to the bottom or hitting here. The cherry blossoms are coming out in Japan AND coming out (according to Stephanie) in Victoria. The Cherry Blossoms near me, by the parliament, are actually a gift from the Emperor of Japan in the 1930’s when Victoria hosted his daughter. This is considered a great honor as Japan marks cherry trees as those from the cutting of the Emperors’ trees and those which are NOT (of course the Emperors’ trees are somehow better). Also much like the UK, they keep a record of ‘significant trees’ – but in Japan ‘significant cherry trees’, so we went during Sakura (the cherry blossom festival as the blossoms open all over Japan at different times) and saw a few of the trees. And stared for twenty seconds before saying, “Do you see anything particularly significant?”

And Linda would say, “Looks pretty much like every other cherry tree to me!” But hey, we tried!

Speaking of trying, I have decided not only to begin my work in editing a book about becoming rather suddenly disabled and how you get to join the cool club (don’t worry, everyone gets there either temporarily or eventually, just keep doing those ski jumps!). I also have written to the BBC to ask to start writing short blogs for them. All of the bloggers were booted off laste last year, and the new site is fine but lacks a bit of the common touch and experience. When most of the writers have jobs for the BBC or are independent comedians while most people with disabilities are unemployed (over 75% in recent surveys - and I consider the complexity of being ME a full time job). So I am going to be really cheeky (wow, what a TOTAL surprise for everyone!), and ask if you can ask Ouch to let me blog for them....for free. The ‘Contact Us’ section you get to by hitting HERE and going down on the left and hitting Contact Us which provides an email address OR you can just put in your comments right there. So I have provided a possible response you might want to put in, just cut and paste:

I like Elizabeth, she show me her panties and she not kill anyone yet. Please let her show her panties and shots of her begging for money on the BBC. Also she is FAR away from your office and cannot hurt you…that important!

If you DO put that in the comment...I will be very, very, VEXED, and come and do things to you; you don’t want to see me vexed (other people do, but you don’t),I may do evil things…..like roll over you many times with my power chair (it actually has a setting you push on the computer for rolling over things, I was rather disturbed by that).

One last thing before back to the powerchair, is for those who are disabled or know someone disabled, I have found a manga series called REAL about wheelchair basketball. The wildly popular writer of basketball series (think millions of copies sold), has a new series about three young men who all are in wheelchairs through different ways (cancer, car accident…), but all end up using wheelchair basketball. I haven’t read it yet, so I can’t tell you how good or bad it is, but it is on my wishlist and I thought if you have a friend or young person in a wheelchair who thinks there is nothing out there for THEM, try this. We all like to be represented in the media of popular culture; we all belong here.

You can thank today’s pictures to Victor who gave me a gift that keeps on giving…kick ass pretty pictures. It is a great gift. Thank you Victor! This is how I thank him, I think he will understand. Besides, the more I try to explain that picture and me thanking Victor, the more sordid it sounds.

Back to the Power Chair (still deciding on a name for it between Lurch or Igor), it is small enough to go from my work desk to my bed and back as well as outside….in theory. It arrived today as did Janet, who talks three times faster than other humans and is about the only person who can out-talk me. She looked like she had been in a fight but it turns out she fell down while walking her dog and her face hit a rock (ouch!). I told her that I could help her in lessons on falling down. She said that she was sure I could, and would see if she had the time. Then she started instructing me on how to use the chair going downhill, like to tilt it backwards on a steep hill to stay inside (it has no seat belt as apparently in an argument I don’t remember I refused a seat belt?). I asked her, “will the tilting make it go FASTER!” She said no but I would learn how to CONTROL the chair or I might fly out of it. I told her, I was used to flying out of wheelchairs and what I need is how to make it go really FAST down a hill! Though having a full on electric wheelchair fall atop me I think might hurt. She said she would not tell me until I learn to control the chair first. I said, “It is straight down hill, what do I need to control?”

Anyway, the other thing which has me irked is there is this big button in the middle of the control panel and it does......nothing. I told the tech, Ted earlier that I wanted rockets out the back, or sparklers or a little death ray. I mean I pay over $23,000 and they can’t provide SOMETHING to go with this big button? Just a little death ray out the front? Or sparklers to go with my Kimono? Sigh. The controls are electronic and there are 5 settings, from indoors to high speed AND going over things. The problem is that as I can’t really feel my hands, as I turned to talk to Janet, twice I accidentally hit the switch moving it from indoors, to outdoors, to high speed. I had no idea, but Janet said, “Look you did it again! You are going to zoom into a wall if you don’t watch it.”

I complained that once I stop (there are delayed controls for my gross motor function, so if I take a second or so to find forward, it waits and then starts going), the chair sort of still goes. She said, there is a law of physics and something in motion will stay in motion, and we CAN make it stop dead, but YOU, without your seatbelt, would go flying. There must have been my, “that sounds kind of interesting” look on my face as she said, “No, we won’t do that, try it out for a week!”
I have tried driving it but so far I have not made it to the bedroom without a) making interesting marks on the wall or b) crushing my feet (in one case literally to about an inch if I had not pulled my leg clear). Oops! So I hope I will get better at driving!

Janet is a breath of abusively fresh air as she tells me that this will help me through some of my stages of my ‘potentially terminal disease.’ I was, “potentially?” And she was like, “I thought you were into living!” And then I said, “Well true, I could be the FIRST not to die.” And then we traded stories of people who should be dead due to their conditions, like SMA stage I children (who don’t make it past 1 year) who are teens. It is all about the attitude (I hope!), and maybe the clothes?
Plus she had good advice about how families will do things that seem very, very cruel but are just part of denial. So she made me feel normal with her stories, including her own stories. And said a very good line which is that “your mother loves you but may not like you” about how we can ‘fail’ to live up to expectations. And particularly how they just don’t want to think about their child dying – that the parent aspect of thinking and dealing with a child dying before them makes them have a system failure. Which I could understand: also now I am going to the pool she goes to because that is where all the paralympic swimmers swim and they are used to seizures and all sorts of stuff and don’t call the ambulance. In fact she walked in one day and they said, ‘this disabled swimmer is having a seizure, we have them in this room, do you know them’ which she says drives her nuts like she will OF COURSE know every disabled person in the world, or this city. So she goes in the room and it is her friend, xxxxx, so she does know them.

So, now I have this huge THING sitting in my living room which can demolish my walls but I haven’t quite figured out, besides crushing my feet how to make it work to give me a better life (except now I have head support and thank GOD, I was thinking all this week – please when will the head support come – seriously). I will take pictures tomorrow of the powerchair and me with several of my different corsets, maybe I will take it out with me to go dancing – oh, I can see a lot of people having injuries with me on the dance floor – maybe I will take the manual just this time.

I hope you have a good weekend and please, remember like Big Brother to vote me INTO the BBC Ouch house because apparently I think I don’t have enough to do!

What's LUSH: My anime self, my new fetish wear and more..

Some of the items I ordered from Japan and places afar have finally reached me. This has not made me medically better but has improved the quality of life in the way having new clothes or new shoes makes you feel good and people saying, “Great bag, where did you get that?” makes you feel good.

I have always claimed that if you want to see yourself represented in literature, and are a person who breaks out of the traditional molds, either as female, in orientation or other issues: go to anime and manga. Where else do you get a lesbian story which starts with a spaceship falling on a guy, turning him genetically into a female (Kashimashi) and thus starting a lesbian romantic triangle? Or have multiple representations of females in sports from sword fighting (the new manga Dorothea or Orfina), to goths who play socccer/football (Gothic Soccer).

For gender bending it ranges from a boy who enters into an arranged marriage as a girl because a) he is dying and b) he is in love with the guy (Devil’s Bride). All the way to a girl who is willing to do anything to be a star singing idol, including being a the new hit MALE singer (Star Project Chiro). The point of this is, that while Japan traditionally does not show people with disabilities (except blindness) in real life or in literature, I knew that if I looked hard enough, I would find ‘myself.’ I did, I bought it used for a couple dollars, but then the person moved to Uni, then found it again and shipped it 6-8 weeks late and today it arrived. Yup, an anime girl in a wheelchair! This girl is from the hit series Mai Hime. I am still looking for the wheelchair character in Air TV, Kanon 2006 and Code Guess (if they made the wheelchair girls in those series into figures). This one is two inches tall and stands on my computer. Yes, female in wheelchair, AND like me, has a short skirt! Ha, take that you wheelchair Physical Therapists!

As you can see, she has a Japanese Wheelchair. Japanese people EXPECT people in wheelchairs to have ‘keepers’ or ‘attendants’ and thus, as you see, she has no control over her wheels, and is just waiting to be pushed here or there. One day there will be a kick-ass self wheeling Wheelchair Heroine, just not yet. Still, it is nice to have SOME representation of a major character (a little over two inches tall), sitting on my computer saying, “You exist, you count in society, you are a part of literature and the human story.” (it doesn’t actually say that, not even in my head – so no, I don’t need to increase the dosage. But for a company to design and produce it, it means all those things I listed and that is why I bought it!)

But that’s not all! The bad news is it looks like my gig at the BBC may be over since they are going to the more ‘controlled’ aspect of “columnists” instead of the random aspect of “bloggers.” So I will have to go back to pitching ideas one at a time. Ack! But in Japan ebay I found along with some other items like postcards, this item for my new and upcoming career: a maid in a maid café serving Otaku’s and lonely guys who don’t get to talk to girls. Yup, I now have my ‘official’ maid socks (it says so right on the label, but why does she have a tail?). Only in Japan, I think could you take normal knee-highs and re-label them for cosplay and specialty café purposes as quasi fetish wear: “Maid Socks” – or maybe these are to be sold at special stores to guys who take them out and sniff them or something.

In the maid café, the maid comes up to the guy at the table as says in meek and mild soothing tones, “How may I serve you Master?” which plays into a LOT of fantasies of lonely guys about girls I guess (and a lot of porno dating sims). And then if they want a picture with you, or of you, it costs between $5-$15. See, there is SO much sex work out there which still lets you keep your clothes on! So when they open up a branch of the Maid Café’s near me and want to bring in a devotee market, I will be completely ready.

We talked to people in Japan and oddly, the Japanese only recently are obsessed with Maids. Until about 10 years ago there were no maids, then they saw some BBC series and guys became obsessed with maids (much like the gentry of the UK). So now there are Maid Café’s, there are two major Anime/Manga series including Emma, about the life of a British Maid, and endless manga, like He is My Master with eccentric rich guys hiring girls as maids in sexual comedies. So, another great accomplishment of British literature, we have exported the erotic fantasy of several hundred years of ‘having sex with the help’ to Japan, huzzah for British lit, the “empire” lives on!

But wait, that’s not all! I also have my new stationary set of xxxholic. The series is from Clamp (the all female group that manages to slip a little girl/girl Yuri attraction into every series they do!), and while the books bored me, this stationary does not. Like many people, I adore stationary, the problem is while I like buying stationary, particularly cute letter sets, the difficulty is in choosing when to use it. Here we have the two sections of this set: the boy/boy love (Yaoi pages) and the girl/girl love (Yuri) sheets. As well as butterflies. Butterflies seem to be the symbol of forbidden love in Japan for the last few years (like the Award winning Yaoi book Day I became a Butterfly or the Anime/Manga series Loveless, filled with boy/boy pairings and one girl/girl pairing and symbols of butterflies everywhere!). Another symbol for forbidden or unusual sex is strawberries, as they aren’t native or can’t really grow in Japan, ergo, EXOTIC. So often Yuri books will have a sign of a strawberry on them or be titled Strawberry Panic, or I, my, me, Strawberry Eggs, or Strawberry Marshmallow (a girls growing up AND lesbian series).

Well this stationary is delish, and as they say in Wales, “It’s LUSH!” but who can I send it to? Which is why I have WAY to many stationary sets. Get a grip Elizabeth and use these things before you lose your hand function entirely (sorry about the writing for the people who are getting postcards these days!).

So, while my health is no better and I am soon unemployed (or will say what all writers say who leave a writing deadline arrangement: “I’m taking a bit of time to write a BOOK.”), there is an upside. I do have a wheelchair anime girl on my computer, and my OFFICIAL Japanese maid socks ready for my new career (or to wear them and then sell them on ebay as “Official Japanese maid socks worn once by girl with red hair” – like strawberries, not a lot of Japanese redheads). And I have new pretty stationary to look at and maybe, maybe actually send out.

Anyone else buy anything LUSH lately (that can include your new power tools or spanners for guys or butchy girls)? I working the rest of today to finish a piece for BBC. This one isn’t about LUSH, or beauty, it is about public toilets. And why are baby changers and everything else stuffed in toilets for people with disabilities? Because we are FASTER at doing the biological then other people?

Death, Beacon, some anime Yaoi, boy and girl pics and me on the BBC

I had some great insight earlier today which was about 8 pain filled hours ago. Amazing how pain can scrub out the old noggin, something about how Death is something I have to face a few times a day, preparing for it, acknowledging it, not some far off place.

Oh yes, the Word of Mouth program on the BBC 4 is playing on Tuesday (today) and then again next Monday. The website for it and the live feed is here.

I shudder at people who know me hearing my voice or what I might have actually said (or been edited to say!). Thankfully, that is past my five days so I can’t really remember. And however bad it is, and my reaction I guess the same is true (I won't remember in a week!).

Tonight Linda went to a support group for people in similar situations (dying spouses or parents); she was the youngest there but it was sobering to hear how many people are slipping through the cracks, and how many doctors are simply avoiding responsibility if at all possible.

But like I said, I nap while Linda goes to a group about my death. There were a few more, “Yeah, you are dying” things today – Beacon did another incident: management who lie to me or lie about me or try to say I said X, because the relatives are ‘used’ to those in care being ‘confused’ make me very angry. These people are the lowest of the low. They tried to call us at 11:00 and then sent over a person at 11:30 and claimed they had “tried to reach us all morning.” This was because my “angel of mercy” who overdosed me on opiates LAST overnight care, is not investigated, just sent on to another person (good luck!) and they needed to put another person in for tonight; but this person wasn’t trained. So they and my caregiver (who they said was to train them on oxygen) argued while I got no care. Then I was informed because of MY not allowing the training (which has to be done by an oxygen technician) I would not have an overnight care tonight. Anyway, lets just move on and try to figure out why my apartment manager needs to give 24 hours notice to come into my apartment but Beacon thinks they only need 30 minutes.

One of the great problems with Beacon and VIHA and other care giving agencies is that they don’t like that Linda is my medical point of contact and try to endlessly call me instead. This is because Linda, like them, is busy and at meeting and they have to leave messages. That irritates them. So while I may have spent Thursday and Friday trying to get ahold of my VIHA case manager; she called me today because she didn’t want to leave a message on Linda’s voicemail. Well, I guess this means they need to plan ahead. The whole problem is that everyone who makes decisions leaves on Friday, and returns Monday. So while I had no one scheduled to take care of me tonight since Friday mid-day, nothing was done until the manager looked at it on Monday (today, when I needed the person) and tried to jam in, lie around and force a solution. Disabilities however do NOT take weekends off and it vexes me that a Care giving agency doesn’t ‘get that’ – that part of seniority is that all the decision makers get the weekend off.

Well, at what year of having a disability do we get our ‘weekend temp’ to come, as WE transfer all of our disabilities on to them, saying, “see ya Monday!” cheerfully while they start screaming from the pain?

Because that is what I want: I want to wheel down on Friday, grab the head of the RN manager and somehow with flashes of lightning, transfer all my pain and conditions on to her. Then as she goes into a Grand Mal, I stand up, step out of the chair and say, “See you on Monday, please don’t call, it’s my time off!” Because that is how she treats me and so many others under her care. So it might be illuminating if she finally “got” that there is no ‘time off” in home care. And that is an ablist and an “us” versus “them” attitude.

Beyond that, I did a bit of postcards this weekend, so to finish, instead of fantasizing about inflicting more pain on those in Beacon – or taking up my managers ethics and calling up her children and trying to trick them into agreements (like when they weekly/daily ignore the person with medical power of attorney and talk and lie to the person who is just back from hospital), I will show a few pics. How about some nice anime girl pics, I tend to LIKE those a lot!
And here for equal opportunity, are some of the boy pics, admittedly, some of them are boy/boy pictures - no, look closer, that is a guy hoisted in the air (oops and one girl/girl pic). I worked too hard this weekend. Or rather, doing postcards as I have been doing them is no longer possible for me, so I will have to change. I am simply no longer able to take two or three days of long stretches of work and get 30 postcards done. Not without hours of seizures or hospitalization situations.

I did do 25 postcards this week and another 6 today but this is the last weekend, after this, the total weekly number will drop a bit as I try out new ways to get postcards created and sent out.

But I’m not out for the count yet, it is just, even at my best, I am getting noticeably slower and weaker. And postcards is a sort of fixed activity which demonstrates that best. It is not what we wish would happen, but it is what we expected to happen. Like I said, Death isn’t really romantic anymore, is it just part of what I face, what hinders and limits me.

Epilepsy news and I am 'officially' a Pain on the BBC.

Well, the health news which is no news to some/many including me or my doctors is that epilepsy causes the exact type of memory loss I have described, as covered by this article in the Times.

“It's like an excessive electrical discharge that burns out some of the wiring. Each seizure may knock out one nerve cell in 1,000, which wouldn't be obvious, but if someone over the course of years has hundreds of seizures, there would be a cumulative effect.”.....“In the 20 years I've been in clinical practice, I've yet to come across a patient who hasn't experienced memory difficulties,”

And

‘Even though epilepsy affects one British person in 131, its treatment has always been underfunded. Doctors and patients recognise that the condition carries a stigma, largely because seizures are frightening.”

I know, stunning news to me after I have had workers and other people leave me because “my condition scares them.” Oh well, eventually the population is catching up.

The important news is that 1) Supernatural Season Three is on hold for me tomorrow! Hahaha! Woo hoo! You see: there is just about nothing that a horror movie can show that I haven’t already lived through. Body shaking enough to almost levitate off the bed? Please, that’s a given. How about being paralyzed while your heart starts to fail and there is the pain of lighting striking your chest over and over and over again? Been there, done that! So I like the dialogue and no, I don’t get nightmares from it. I do laugh a lot.

And 2) I am getting interviewed for BBC Radio 4 on Wednesday. At first they were going to do me live on Thursday but then decided that since I have a rather, um, salty use of the English language (“Those fucking doctors don’t have a fuckin clue!”) to do it a day early. So they are going to allow the people at the BBC to include a lot of “bleeps.” I am talking about Pain.

It went like this: one of the researchers for the BBC 4 remembered an article I had written on Pain (I’ve written a few). She emailed. We talked. After an hour she thought I was a “character” and now they have the CBC Radio Studio booked for me. I think I am talking about the utter fucking uselessness of the "And how would you rate that on a 10 point scale" both with the variations in people pain thresholds and with so many people with chronic pain conditions already. I haven’t done this “Remote” interview thing before, but thankfully I did do a Radio interview about my book Zed. So not totally unprepared. I just have to hope that I don’t get my worst nightmare; hearing how I REALLY sound (does ANYONE love the actually sound of their voice? I want to be all elegant and I sound like a chain smoker from a local trailer park – the dying thyroid doesn’t help). I have also consoled myself with the fact that if I totally bomb and make seal barking noises or something similar, there is a pretty good chance I will be dead by next year. So while totally bombing on radio might "haunt me my entire life," that will be short and mostly spent watching TV series.

So that’s the news because I am beat; and I have to go to bed early because….the roofers, much like Santa if Santa used a hammer and blowtorch right above your head, will be arriving bright and early tomorrow.

Ta!