I want to talk about something that is very disability related and then about something a little lighter. I have been having a hard time. Because though Linda is home, I am more often the caregiver than she is as not a day has gone by when the phone or email has not left an eight hour mess on our door. And I’m not going to talk about THAT, what I want to talk about is what it does to a person with a disability.
I went to badminton, and won the games, the last game, I threw myself out of the chair, made the hit, over the net, screaming, “Play on, play on!” I had positioned myself to tip forward so I thrust myself back and up, and we went on and won the point, winning the game, 15-13. In that game I also made a hit that had my chair at a 45 degree angle off the floor, but I had enough trunk control and it slammed back down. I overheard the other side going, “I was sure it was a winner but that girl in the wheelchair…..I mean, she went off the floor……and her arms as so long…I was sure.”
The problem was, I couldn’t come home.
I sat in that lobby and home was the place where I had a medical appointment in seven hours, it was where I had to help write email messages to government, where Linda was getting sicker in front of my eyes. Where everything of joy turned to ash in front of me.
I simply could not go home. So I sat there in my chair for an hour crying. I was actively suicidal, when I finally moved. I rolled into the road wanting to be hit. I rolled past some bums and I felt so numb I WANTED them to attack me, wanted them to rape me because then I would be in the hospital and not have to go home (my body was so numb and so bent on self destruction - if you haven't felt it I don't know how to explain that). It took me 80 minutes to go the three blocks and then I cried at home, and then I got to work for five hours, dealing with the days crap. I had nightmares. We are three days away from our current financial crisis (I can’t remember what it is but read back and it was a computer), but we don’t know if Linda is even going to receive a paycheck and we are going to have rent. This is life. A new day, a new call from an investigator who can’t answer a simply question, “Under whose authority were you originally hired, because I can’t find the authorization for your hiring or your investigation.” This is a investigator who is to collect all the evidence and anecdotes from Linda who will then take it to the people who are currently discriminating against her. So I worked for eight straight hours on that.And then I stopped breathing. I stopped breathing for a LONG time. Linda had to do mouth to mouth. I saw a doorway and shapes rushing through but as much as I tried to get to the doorway I couldn’t. Everyone was just passing me by. And then I started breathing on my own again. I didn’t want to live because I had lost sight of beauty and joy. I believe with fighting insurance companies, or various agencies, sometimes, it seems easier, if we just ‘accidentally’ didn’t stop in time for traffic. I came home and two of my fingers were black. Another day. Do I do anything about them? Linda did. It was severe frostbite. I had that feeling of heaviness, of not knowing how to go on, of not knowing and not wanting to know what the future holds. It is beyond depression into a blank numbness. I went to sleep by dreaming I was thrown into a giant pit, falling in darkness forever. This is as close to comfort as I had.
And I got up, and I stared out and nothing had changed. There was/is still more complex emails to write, and I was in an empty space with nothing. But I go on.
The look of confusion, of blankness is because now my memory trap, due to stressed and frequent seizures has diminished to only a few hours of memory. I literally live in a blank field.But that doesn’t mean that beauty doesn’t exist. I was sent this letter from someone,
I don’t know yet because I haven’t opened it. honestly, I find it so mysteriously wonderful I don’t know how TO open it. To destroy such beauty, would there be anything inside worth the feeling that the beauty gives me; which is to care about something again?Also recently, I received from someone I communicated with on-line, some Bisen. Bisen is art of stationary which is produced by artists, in fact, some artists go on to be very, very famous. But in the early days, they make an art print and due to the extremely high quality of Japanese Paper, they can reproduce color so high that it can’t be reproduced in North America. Some of it is watercolor, other ink, some abstract,
some detailed. And while it is very thin stationary, like a bond weight of 5 maybe, it can only be bought at these expos and shows and so collectors or people like me who buy them and then send them on to others, can only get more by contacting and swapping what they have with other collectors.This particularly paper, a single sheet is from the famous group “Green Glass” and from their ‘Jewels’ series, called Pearl.
This is from a less known artist who prefers drawing with watercolor, and less detailed
but cute in it’s own way.This piece here was the reason I was excited and went out today to get them laminated (I get a very thin laminate on them to stop them going downhill as just a thumb pushing too hard with crease them forever! Something the MANAGER who dealt with me today couldn’t seem to understand. Indeed, he claimed not really to laminate until I told him I came EVERY week – it was less than customer based service). There is a series called the Gown Series by Green Glass, there is Blue, there is Pink and there is White. I have never seen White even in pictures but a person had a Pink, so I traded for it and it arrived and I was pretty excited, so I REALLY don’t want a guy with butter on his fingers to ruin this piece of art.
I know, I get excited about silly things, but Bisen isn’t expensive, it is just very, very hard to collect. And truthfully, I tend to give most of what I get away!I also, with the Bisen got a Shitajiki board (also known as a Pencil Board – I give these away too!). These cost between $5 and $45 dollars, are made of a laminate and have pictures on them. Often they are to promote a particular game or anime. This one is to promote a store,
these two girls are going off to a comi-fest (you can see the catalogue in their arms), and on the back is a list and map of the stores. One is dressed with cat ears and the lesbian overtones of course had NO BEARING on why I might have bought this (I can't see Linda and I in this board at all, no no, no - what do you mean "da' Nile ain't just a river in Egypt?")Other Shitajiki boards are created by stores for special events where they hire famous artists. This is an example of a board like that.
(she's so CUTE! But *ahem*, I showed it becuase of the Autumn theme in it, honest!). Because they boards have two sides, the artists can make two images and that is sort of the fun of getting the boards, they are permanent art, which never fades
(What? You see lesbian overtones in that too! No, the reason I keep getting art of two women is um, an odd accident, some sort of eye problem, I think!). Some of the boards are turned into postcards and I have sent quite a few of those out (about 50 or so). I also frame some of the boards and send those out. I find them to be lovely and a reasonable present of personal art from a named artist.Some Bisen (the paper stationary) are special, there are called, “Puzzle Pictures” because each paper is a separate image, but if you can get BOTH images, and put them together, then you get a third image. Here is the first Puzzle Picture I have been able to complete:
so a boy playing with a plane and a boy with a cat instead become a larger picture. I am working with the framers to see how this can be framed safely.Okay, enough! As some people say, I am a little Japan crazy. Not true, I just find them pretty. And right now, I like pretty. In fact, while Linda and I were taking this picture I was like,
“Why is it WE don’t have matching bra and panty sets like this!” I have to admit I like the purple butterfly, no matter how impossible/itchy that might be if you tried to wear jeans – but then I think these are a bra and panty set for people to take OFF, not on, right? Anyway, she agreed and we are looking forward to the sale at Victoria Secret after Xmas – BRING US THE PURPLE TINGED BRA AND PANTY SETS! Oddly, I am actually the short one in this picture becuase you notice her staring at Linda's breasts. Linda's breasts are like the sunset, while they go on day after day, they are so beautiful that I could stare at them all the time. Okay back to Victoria Secret, which is fun because there are rooms and room and then finally the changing room and I have a friend who calls it “The candy store” because you can get so much there that looks delish! But also in some mid room is a VERY uncomfortable looking male who is trying to stare BACKWARDS into his skull while three feet away two 21 year olds are trying to find bras in the C basket. Because his girlfriend is trying things on and if he is caught oogling when she returns….poor guy. Besides that the WALLS are pink, there is pink everywhere and he is outnumbered about 100 to 1 by women. I feel sorry for the guys and think like some stores have for children, Victoria Secret should have a room with lounge chairs and plaid walls and magazines on electronics where men can be deposited.Right now Linda and I are trying to get buy, minute by minute, hour by hour. We take our little pleasures (like stealing food from each other – woot!).
And though I don’t know what day it is, I keep on. I have worked and now I will go sleep, though it is past 5:00 am.I hope soon, that I will be able to see some sky and sun and beauty and while I will look a bit like this,
bewildered by it all, I will learn to adjust that not everything is going to attack me, it just that some days seem like that. Too many days. But the sun will come.
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