Lost, sexy bra and panties, Bisen, Shitajiki, beauty

This is going to be an image heavy post, sorry for those one dial up, but I promise it will be worth the wait (tune in tomorrow for the Lesbian Sleepover Part II – that one will be REALLY worth the wait!).

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.

Abducted for fun (no grief today!)

I am being taken away! Because I am on a mission: have some fun (or buy stuff, or both, whatever comes first!). So this picture should tell the whole story. Yes, you are thinking what I am thinking, “Why is it my starving is making my breasts SMALLER; I need a disease to get boobies like HERS!” Well, that was my first thought, my second thought was, “I NEED to find the place where they sell those amazing tops!” I mean, if I could wear those, woo hoo – what fun I would have with my care givers when they show up and I am in a bikini bottom and that top.

Care giver: “Um…ah….Do you want to get dressed?”

Me: “I AM dressed! Haha, woo hoo! It’s beach party day!”

Seriously though, Linda is taking me away for a day, I think to spend some quality time, if you know what I mean, like this couple here. Okay, try to remember they are two GUYS! And I REALLY hope that Linda doesn’t smoke; do not like garlic breath, Doritos Chip breath and smoker breath while kissing; particularly if tongue is going to be involved.

Of course, we don’t just “go at it” (Though these days, after such a LONG time, I kinda wish we would!), there is called foreplay. Which for some people is having their Significant Other do housework (???), but for us, it is definitely eating. See us sucking on these succulent strawberries! (Alliteration!) Actually Linda does have a thing for strawberries so that would be good. And kissing AFTER strawberries is WAY better than for example kissing after Pita bread with garlic humus.

Of course, I am going to take some “me” time as well (in fact this is the part where I ask you, what do you do for fun when things are getting you down – because in case you hadn’t noticed from the GIANT BLACK CLOUD surrounding the last few days, I’ve been a little down.). I usually listen to music. Actually I also listen to music to avoid going insane. Because I seem to have super-sensitive hearing so when Linda DOES eat the Doritos, I just put on my music, drink my gatorade (with ice cream on top?), and zone out, usually to some trance music.

Of course, another option for fun is going to see something in the great outdoors. As this picture shows, even though it is heading toward winter, the great outdoors can still be pretty great with rocks and lichen and moss, and trees and such. However it is rain (AGAIN!) today, which sucks for wheelchairs because it is very hard to wheel, VERY hard to brake and you are basically saying, “Please soak my legs and crotch!” Although I do have a blanket which has been scotch-guarded.

So that leaves the indoors. There are GAMES (no, I actually meant games, get your mind out of the gutter, this is FOREPLAY!), like playing solitaire. Yes, this is pretty much how I play it, only at this point I am looking up at Linda going, “Where do you think I should put this card?” And after I do that about five times, Linda says, “Wow, I guess you must be having a bad day, this games seems really hard for you.” While inside I am going, “Hello to Linda! How many times do I have to flash my boobies at you before you get the point?! Ahhhh, jump me already!”

Oh, in case I hadn’t mentioned it, this might be a PG-13 sort of post.

Of course sometimes things need to warm up first, so a bit of tea, some dress up and some talking is actually a very enjoyable time. And CAN be foreplay (geez, what do I have on the brain today, I wonder?)!

I also like to cook, or I used to, called the “Elizabeth style of cooking” which means I go EXACTLY by the book the first time and then scientifically think about how to change it later, the next time. Only the last time I cooked my arm swelled to twice it’s size. Something about heat intolerance and cooking don’t go that well together but I can tell you; making lasagna from scratch gets Linda purring. She LOVES me! Unfortunately, after eating all the lasagna, she wants to sleep. And no, not like, “Let’s go to bed.” But like snoring and rolling over muttering, “More parmesan cheese!”

One problem is that I am a little scared of cooking meat. Because once or twice, the grease did something a little, um, disturbing, and this was me. Only I was going, in my VERY CALM VOICE, “Um Linda, can you come here for a second, I need a touch of assistance” (like a fire extinquisher!). Which is why, I recommmend for our Uke here (first off that apron needs boobs, choose appropriate attire), while he may THINK he is all sexy in his apron and short-shorts for getting his Seme (man-toy), watch out! As let me tell you, from experience, when the grease gets to splattering, there is going to be a lot of high pitched screams as it burns into that chest.

So, that’s it, I will tell the tale when I return, and with pics of me hopefully smiling, and having fun, and I REALLY hope finding that particular shop which sells those tops that I can wear with a bikini (actually I need to get new bikinis as I have gone from Medium to Small – nothing like um, wasting away, to put it in Victorian Terms). What do you do when the blues have turned black and it is raining? It seems my solution is to be abducted! Don't worry, I still be coming back to comment.

See ya!

Decided, 'going to live': 15 reasons why

I had a shock today. In the mirror I could see these two huge smudges on my face, right on my cheeks. I couldn’t figure it out because it wasn’t like I had been reading a newspaper (and then putting my hands on my face). And after rubbing a bit I realized that my face had lost so much weight that with the light above, the hollows under my cheek bones were creating a fist sized pocket of shade. Actually not just under the bathroom light but in the hallway, in most lights, all lights. And my collarbones which seemed to GROW (it was explained that they didn't grow, they stuck out more becuase the skin under them has shrunk) are sticking out in sharp relief. And to add insult to injury, my little titties are heading toward itty bitty titties! I had lost weight, rather dramatically, in just over one week, eating the same as Linda.

It was another one of those moments, along with all the hair that I am losing that brings home that I am not just ill, I LOOK ill.

I asked Linda what she would think she she saw someone at work with my hair loss. She said, “I would assume they had cancer or some other serious disease, maybe if I was rude I would ask them about it, ask if they were on Chemo.”

So I guess one of the things giving me a youthful look is that I have lost 10-15 years of the little fat layers which fill out a woman’s face and cause the rounded cheeks and dimples.

And yet, looking in the mirror, talking to Linda about contacting the case manage to get the dietician to return, and what is next, how do I go about getting a tube put in if that is what I need, I said, “Because, dammit, I want to LIVE.”

I looked at her and said, “Honestly, I have put up with TOO MUCH SHIT to just go ahead and die.”

She said with a little laugh from being at ALL those tests and meetings from the last 16 months, “Yeah you really have.”

“So yeah, screw the dying.” I told her (can you tell my pain levels are less?).

I had several partial seizures during the night. My super painfull, super long day didn’t magically turn off when I slept, I guess but the seizures started. I actually woke up during one when my right leg and arm were going crazy, and then just sort of thought, “Oh well, that side never did cooperate” and tried to go back to sleep.

So today I cleaned out the blood from my nasal cavity (After a seizure there is always a pool of blood in my right nasal cavity, we assume it is from a spike in the blood pressure during the seizure). And I tried to come up with some reasons on why I am NOT going 'gentle into that good night' (seriously, that Lyrica is the BOMB, I can actually think positive thoughts which don’t include burning doctor’s cars). So here it is:

1) No one has ever done it! No one has ever survived my condition, which means that the longer I stay alive, the more “I win!” Admittedly there isn’t really any competition because I assume most people who have this want to live, but since no one else HAS managed beyond a couple years, then living is doing something considered impossible. And doing something considered impossible is what I specializing in attempting.

2) Once I decide to live, then I will have all my willpower to put toward breathing (which is troublesome), particularly if my pain is controlled, as I don’t have to keep trying to escape that (not breathing is a GREAT escape of pain).

For example yesterday, I actually slowed down and controlled some seizures. We were in the doctors office and I was on the brink. I could feel myself tottering, as I had lost control of my eyes, which were starting to twitch and my right hand was spasming and Linda says in this intense voice, “You CAN’T, if you go into seizure, we won’t get the Lyrica.” And somehow, I think through the pain or talking or whatever, I literally HELD ON and was on the brink, in what is called the “aura” for about 10 minutes (couldn’t control my hand so I sort of just held it with the left hand in a clamp).

Does this mean I can control seizures? No. It means that somehow, I was able to stay on the lip of a partial; most of them are like hitting a concrete wall at high speed. A grand mal is a "wham bam and 'no thank you' ma'am" which leaves me fingerspelling upon waking, "Where is that truck which hit me?"

This particular seizure was a combo of pain and fatigue and lack of oxygen and somehow it was one that builds (I have those, they start in a limb and spread, and spread, and spread).

Just in case you think I am some Will to Power dominatrix, I had a seizure this week and had use of two fingers and my thumb and DETERMINED that I was going to drag my body to where I wanted to go….with my two fingers and a thumb. Linda just watched with mild amusement as I pathetically am busy scratching on the carpet willing my body to be dragged. See, just because I can move the fingers, that doesn’t mean I have strength in them, nor does two fingers move an entire body, at least not mine.

3) I want to see Season three of TV series Bones. I promised Linda I would watch season three of Bones with her, and if I don’t live, then I won’t get to see the episodes of Season three with her when it come out on DVD (no TV remember!).

Admittedly, trying to live until the final season of Lost does make me want to STOP breathing (Does it EVER end? Does it ever answer any questions, like why is the Pirate ship there?), so I will focus on programs like Bones, Supernatural, and NCIS for motivation(I LOVE the women in NCIS, Abby the tech goth girl because when I watch with Linda I get to play the “I have that, it is from Demonia! And that is from Morbid Threads! I have that corset, I wore it last week!”; plus the most deadly person on the NSIC team is a woman! The female Mossad Agent David (really a female!) who they keep screaming at, “No, no, we want to keep this one ALIVE!”). Plus there is all the British TV murder series and Dexter, our cute sociopath who is sort of misunderstood (season 2 out soon!). Plus the fifth season of The Wire is coming out and looks to have the grit and reality of the first season. Yum! So yes, I am ready to be intellectually engaged, to be entertained above the normal (which now seems to be reality shows and beautiful people being constantly neurotic and talking about it…..so does that make LOST a reality show?).

4) Writing. I want to go back to what this blog was about, promoting me as an interesting person to read, but also a person who is a writer and a researcher. I want to write that Part II post about gender, social pressure and the results on children who chose gender variant activities. I want to write that book, get it published and go to a fucking book signing and see someone show up and say, “Hey, I really like your blog.” So I can say, “I’m really, really sorry, I honestly don’t swear that much in real life.

Let’s face it, if I WANTED to talk about doctors and a dysfunctional medical system endlessly, I would have gone to medical school or done my doctorate in THAT. As much as I appreciate the way everyone has hung on for the ride through the “Oh My GOD, and here I thought the Canadian medical system was BETTER?”, I want to spend more time being funny, having fun and writing about that.

Come on, hands up everyone who wants to see me go out and try to do a 7K race in my wheelchair and blog about it!

See, That’s interesting. I want to take a trip and photo whore every day another 200 pictures, pick the best to post and write about it. I want to do a book, EFM (Elizabeth Fucking McClung for those just joining): The first 18 months. Or the First year. Or From Epee to Catheter (yeah, I want a title that makes people uncomfortable, does that surprise anyone?).

Sure I am going to write about disability issues, and let ask, why exactly ARE people uncomfortable with, for example CATHETERS when we have public restroom signs everywhere? When you think about it, it is really the same thing (there should be a little portable/disposable catheter dispenser in the disabled toilets along with a tampon and condom machines – hey, disabled people or PWD’s have needs too, just like REAL humans).

5) I want to petition Rick Hansen’s Wheels in Motion to actually include the “all wheelchair users” which is the phrase they USE when they raise money, but they are only giving that money out to traumatic injury Spinal Cord Injuries. Dude (see Rick Hansen is still alive and here in BC!), if it takes 10 years for someone with MS to have loss of all leg function, that is a spinal cord injury, cause nothing from down there is going up the cord, is it? And yeah, as a person who is rated as a partial quad and is headed toward becoming a full quad, the whole simplification, of if you had a tramatic break you are spinal cord injury, if not, they you are just...ill...irks me more than a little.

See I can and have run over my own foot (it fell off the foot rest, and I was shoving the tops of my wheels hard going, “What the hell is this chair stuck on!” and Linda goes, “Stop! It’s your foot!” which was now upside down with the wheel atop it and the toes half sucked into the wheel guard. And I go, “Dammit, not again”, and back up, pull the foot free and tie it down.) But no, I’m not PART of Wheels in Motion (I called them) because Rick Hansen says I don’t have a spinal injury. Okay basic anatomy lesson, the reason it is called a spinal injury is because that is the most common way and really the only way messages reach the brain. If you break the nerve cord, or damage it, the messages don’t reach the brain. If, as in my case, you have some mystery thing going around and destroying each and every nerve, you STILL don’t have messages going up the nerve cord of the spine to the brain, and you aren’t ever going to. So get with the diversity program, Rick!

6) I want to see what happens to me next. I mean, seriously, isn’t this disease just totally bizaare and amazing! First that I am still alive after all this is odd. But also how brand new symptoms/body functions just show up or disappear.

So this week it is that I can’t tell if I am peeing (oh and you can put a burning pot on the top of my legs and I won't feel it). Oh yeah, now I have seizures. Now I can’t convert oxygen. Now I have to go out in a tank top because my torso is superhot and goes into heat stroke (and coma) but I need AT THE SAME TIME to wear winter gloves because room temperature gives my hands frostbite! I mean, this is amazing! I would say it is a hoot, except all of these are really painful or distracting.

But did I think a year ago I would have an eye-patch by my bed and by the computer for when one of my eyes starts to wander or feeds my brain garbage (By the way, a good gift idea! I need cool eye patches for going out or just wearing around). Just another part of the condition.

Look, this may all be Lyrica talking but it isn’t. I have been thinking about this ever since five to seven people in the last several days said to me, “Wow, if I was going through what you are…” or “If I had what you had…” or “If I was in that condition…” which all finish with, “I would rather be DEAD.”

Know what, I wouldn’t rather be dead.

I can make myself dead any time I want, and sometimes, yeah, I kinda want it. But most of the time I don’t. And just because I have a disease that is supposed to make me die (and has made everone ELSE die so far) and that I am progressing through the symptoms like I am trying to beat the rest of the class to the prize, doesn’t mean I want to die. NOR DOES IT MEAN I WILL!

Fuck em! I may be whining and mewling tomorrow in pain and tell you from my depression that I look forward to death and that will be completley TRUE. But today, and some days, what I hope are more and more day where I want to, am determined to and am going to LIVE.

FUCK DEATH! Fuck the crappy medical service. Fuck that I have to do everything though the back door or around the obstacles. I am still alive and I am Elizabeth Fucking McClung and just because I have a slightly/kinda damaged brain does not eliminate that I am still a force of nature. But now, instead of feeding all my energy into vampires like Beacon, my GP, and this medical system, I am going to try and use the energy to come up with and try out ways to live.

There is definitely going to be a part II to this post (becuase I only made it up to 6). And please feel free to add your reasons why I should fucking live a LONG time. Plus maybe suggestions on things I might want to do with my new found determination to LIVE

I will tell you two, which will seem rather odd:

1) I want to get out of this apartment at least four times a week on my own power. I was doing it six, the last few weeks I have done it once a week. I am not dead, and while I may be dead tired, I can still look at the flowers, even on a summer day for five minutes!

2) I am going to go for a ride in a glider (I hope the season isn't over!). I never got to learn how to fly, but if I can go for a ride in a glider, then that is what I am going to do.

Come on, I'm open to being inspired!

To be continued….