We are off on a ROAD TRIP! I made a promise that if I was still alive I would be at the Eisner awards with a friend. It has been an up and down year and we are heading down budget style but when they announce the winners we will be there (or recovering nearby). I didn’t really get that it was attached to Comic-Con, the giant comic/gaming/book convention annually held in SanDiego (where anime is just a poor cousin…alas). But no problem as doing different things is the challenge of being human: change and grow.
So we are going on the road in about 36 hours, except I have to sleep 4 times in that period, and pack some clothes, and a few other things, you know, books, oxygen, moisturizer, um, dunno. I spent the whole evening figuring out how to use the PSP I have for hand therapy (that sounds really dirty doesn’t it?) for storing videos from youtube. Wow, way to suck up….oh 7 hours, EEEEPPPP! Oh well, I have about 20 videos and um, nothing else. Not even a corset: time to attack the closets and cupboards.
Oh, we are driving because I am a ‘frail thing’ (how exactly does a frail thing gain all this water weight, even the doctors say it is, they just don’t know how to get rid of it – oh wait, that’s because it is a side effect of congestive heart failure – which I figure can’t be THAT serious, I mean, they would DO something like, give me a ‘decongestant’ or is that something for allergy season?). Specifically a frail thing that can’t survive a take off (maybe, let’s find out!). I also will be posting EVERY DAY or TWO DAYS so tune in, okay? We are driving down to keep me in the air conditioning. I may have a survey of the hell hotels of the west coast, but Linda says ‘think the 1/3rd rule!’ – and so I do. After trying to gain strength and then getting whammed by the heat instead I am scared to go outside. Now that is reason enough TO GO OUTSIDE. Face my fears.
Linda is still applying for jobs, and with the heat gone we are both a bit more sane. Also, I don’t think about doing icky things to myself to stop the whole pain thing (imagine a life where all you can remember is a) heat hell b) not sleeping c) extreme pain d) seizures and other pain things. It makes life look, well, not one I would advertise. But I am EFM and I am on the road. HA! If someone can loan me $5 I can buy some postcards (all the money went to the trip and um...I dunno, it just GOES. That happen to anyone else? I use the library and they end up charging for LATE fees whether you are conscious or even in the hospital or not, boo to them!).
This is the garden I would LOVE to visit on the way to Comi-Con, however, being not only a continent but also an ocean away, I would need Chitty-Chitty-Bang-Bang as my vehicle to see it on a road trip. Too bad that, you never know when you need to learn about poisonous plants, and they always suspect everyone ELSE but the woman in the wheelchair (insert odd crackling laughter here).
We went by the James Bay Market to talk to my favorite potter, who has made this vase. Apparently it is NOT a blue vase (no this isn't the Matrix), but it is a titanium vase which due to the infusion of titanium which actually absorbs instead of reflects light, the blue is what colour escapes. So it is every colour BUT blue, or the blue like in why the sky is blue and is a vase which is an optical illusion having shifted the colour spectrum through the materials. I think that was the explanation. She uses a lot of different minerals, in order to get special effects, and I never heard of a pottery vase made with titanium before. Maybe someone scientific out there can explain it better?
We did about 50 postcards this weekend, and I did a postcard project blog post about the postcards up to this month, over at the postcard project. This was a ‘children’s week’ where we do a lot more of the children’s postcards, because it is cool as a kid to get a postcard. On the trip I hope to get more good animal postcards because we pretty much are cleaned out, that and really good stickers, which most of them we got sent to us somewhere near San Fran, so will go search there. Actually, I hope we get lots of really interesting postcards as we go to the Redwoods and other Big Tree National Parks, and Yosemite on the way back. Also to the Oregon Coast which is supposed to be gorgeous (I hope THEN it is sunny). And of old San Diego, I hope it is still as I remember, the old Well Fargo building.
Anyway, I am outta here. I will try to update tomorrow about how I lost almost an entire DAY (night and then day) trying to get Amazon.com to understand me. As Amazon does not have a policy for people with speech disabilities or impediments, I found out. And some call centers in some countries end up being a comedy routine of ‘who’s on First’ which goes on and on. At one point I kept trying to say, “I have a SPEECH impediment” and they kept going, “Spanish, you want someone to speak Spanish?”
As the day goes on I can be hard to understand unless you have been around me a lot. The tongue and throat muscles get weaker the more I talk.
I eventually said, “Non Espanol!” then asked, “Can you understand me?
“No,” the second person said (the first had said I was static and hung up on me), “I can’t understand you.”
I paused to ponder how they could answer that question so perfectly if they couldn’t understand me?
“Supervisor!” I said (It might have been closer to ‘Uper’isor’ but they got it and said, “Yes, I will transfer you.”
Thank GOD! I thought.
“If you could just outline to me verbally what you want to speak to the supervisor about.” They continued.
I pulled the phone away from my ear and looked at it. Dude, stop using the manual, PLEASE!
I didn’t go away. I just found that I was the passenger, not the driver anymore when it came to my body. That kind of sucks.
I am going to blog as often as a can, many times a week, once a week. As often as I can, but then, every day for many days we have had to make calls, stop calls, decide 911….every day.
I need to get stronger. Not just because I spent most of a very small inheritance on gifts (for family, and online friends). If you haven’t gotten any it is either because a) I had a grand mal/small stroke and don’t know you as that part of my brain withered and died as it was crushed by a surge of electricity or blood (which is like battery acid to brain cells). b) I haven’t been able to afford to send your gift to you or heard from you to verify that like gifts/are a friend/do what friends do stuff.
I also got more things for the postcard project though as Linda says, “You have enough already for the rest of your life.” Yes, maybe, but like getting and wearing new clothes, it is fun to have new things to send, new stickers from Japan, new postcards from Germany, new stamps with pictures of the three of us, custom made, stickers of us, custom made. I guess those are gifts too, part to me and part to you.
I need to get stronger because in two weeks I am being transported to San Diego. I made a promise a year ago to go to the Eisner Awards if I was alive now. I made it. We are going by van. I sold my manga to fund my part. It seems that there is a belief among some (Cheryl, Linda, others) that I will die July 27-29th. I hope not.
At the neurologist, I found out that the neuropathy progresses, though how it progresses beyond ‘very damaged’ I would say I don’t know, except I do, since two neurologists have told me. I will lose more and more use of my arms until I won’t have use of them at all. Already I use my forearms more than my fingers: to scratch my nose, to pick up things, to catch things. The teeth are for opening things or positioning them. As Linda says, “I don’t know how it will be, but you will find a way and that will be how it is then.” I miss hands, and I will miss the limited use I have even more, if I can live through into the autumn.
Having the last aspects of hope shredded in front of me by specialist/doctor apathy and budget cuts, this body will continue, unattended, as I and others try to keep it going each day. I am a different person now, than I was. Being a passenger on your own body does that, as does pain that makes time stretch and bend, and hallucinations frequent. My dementia continues as seizures and heart, lung and conscious failures increases, and the heat accelerates and adds to all of it.
Having the last choices wrenched from me, I experience some peace for the first time in my life. I was born and then taught to be a hero, to live the life of the hero. I think that much like adults who tell you not to smoke while puffing away no one ever expected me to actually BELIEVE. I was and am a ‘True Believer’. I remember my father telling me that we needed to live a perfect life like Jesus but we would fail and like all humans need God’s sacrifice to ‘atone’ for us. I was young, but raised scientifically (at school I used anatomical names for everything including raising my hand in order ‘to defecate’ or ‘urinate’ in first grade, much to the horror of the teacher and principal who eventually got me to say I needed ‘to go’ as I wouldn’t say ‘I need the girl’s room’, I told the principal plainly, “No, I need to empty the urine out of my bladder, which room is social acceptability”) so I said, “No one has lead the perfect life YET.”
My father said, “No, but if everyone, all billions have tried then ALL fail….”
“But it is theoretically possible, right?”
My father thought a long time and said yes, it was. And I believed him. And since that moment held myself to that standard, which I failed (at perfection), but I strove to attain it. The neurologist asked about my cut scars and I said, “I am an extreme Type A, and I expect perfection, and dislike failing and when overcome I write my failures where they can be seen.” We then talked about the high incidence of self destructive counter-coping behaviors among student doctors. But as I was leaving he said that due to my sexual abuse and open self harm, the other (male) doctors had withdrawn treatment. That I had not been treated or even taken as a patient by doctors and specialists for YEARS not because of the science of my disease but because of “your deep emotional complexity”. I felt physically as if he had kicked me across the room, my gut hurt so bad. I later decided to ask him if he would write that out, and if he would, I was going to start a suit against the government of Canada that medical treatment for chronic and other conditions should be given REGARDLESS of sexual abuse, emotional abuse or other patient history.
To be told that I was like the AIDS patient in Texas who had been put in a room, given water and no treatment because….of who they WERE, of what they HAD, until they died, it was crushing. It turns out that those four young males who had marked my body and mind still marked me in a way where treatment to me and others with abuse was delayed, or denied, that male doctors were continuing what the abusers loved most of all, the power to hurt me. Sexual abuse isn’t about sex, but power, domination, and establishing that they are dominant (Sounds like Medical Specialist but sexual abusers take it to the next level). I thought I had cracked open and left that binding on my soul behind me, without knowing it was being passed in notes, like a class deciding who to bully, from one medical to another. In three years, all prescriptions, medical aid, home care and life quality has been given by female doctors.
I am learning how to fight in a different way. Fighting to keep my dignity as a human being, fighting to stay here. A very different type of heroics than I have had the rest of my life.
I had lived in an odd community where I was in a feudal system, and minor nobility, I was trained for court, I was trained BY the court, to serve at tables of royalty, to know etiquette, but most of all to know who you ARE: the unseen awaiting rulers. God was coming back and we were going to assume our roles over humanity, and so we should treat them as such now, and practice now. I don’t think they expected me to take them seriously. Or to link Jesus to the tales of the Knights, of the Round Table, that Jesus was the embodied noble, a servant to all. I would be a Hero of that court. If something is 'right' (note, not if “I am right”), then regardless of the consequences TO ME (not ‘to others'), I must continue. That is how I lived, that and with the conviction that choice is the most sacred of what makes us divine. That those who desire to take choice: tyrants, abusers, despots – the are recognized as doing wrong. But in daily life, to refuse to sign a contract unless it is taken to a labour lawyer, or require management to sign the same one, leads to threats of job loss. I have lost my job over: gender equity, civil liberties, religious law and equality as well as almost losing five years of university. The bully cannot conceive of a person who will not be beaten down regardless of consequence, and who goes and gets an ombudsperson, or lawyer. To knowing participate in an act or the continuing of an act I know to be wrong is immoral. And I will not choose an immoral life simply for convenience. Nor will I allow those around me to take the choice away from those who are the most vulnerable. And I don’t give up.
Those actions makes those in authority really, REALLY angry. It also gets you labeled a lot of things, like ‘nutcase’ but then, as I told people, I am follower of Jesus (okay, I didn’t tell them Jesus, the knight errant or that I thought that Don Quixote should have continued to see a world of gold, and fought for that instead of living in a world of iron and steel).
This ‘Revolutionary Girl’ AMV embodies the type of hero I have tried to be, and have been, for Linda, for others.
To give some context Revolutionary Girl Utena, which deals with abuse, desire, gender roles and society was, even symbolically so effective that 1/3rd of it was banned for release in the US (including DVD). Utena is determined to be a ‘prince’ and dresses as such. She sees her classmate Anthy, who tends the roses, being physically and sexually abused by a male classmate and intervenes. She accepts a duel challenge and arrives with a bamboo blade only to find the male with a steel sword. The winner of the duel ‘owns’ the ‘Rose Bride’ (Anthy), which the student council who have rose rings, believes will lead them to power. Utena fights so that Anthy might make her own choices, and have that freedom: to choose either for good or ill, but her OWN choices.
Utena’s blade cut to almost nothing, she is told it is useless and to give up. A Prince does not give up, and so with six inches of bamboo against a steel rapier they charge (she gains the Rose Blade after this). Following her victory, many turn against Anthy, who is so used to abuse and being treated like an object that she has given up resisting. Utena finds her, breaks up those who have ripped up her dress, whips a tablecloth from a table and creates a simple roman style dress pinned with a rose. Utena then dances with Anthy, openly declaring their bond and they move to an abandoned housing building and live there on campus.
Sometimes to be a hero is to be against the system, and the actions of those in it. To be alone, fighting for just one person, a person who may decide to betray you, or refuse, at least for now, to leave that system. But the point of the hero is to give them that choice, that space where they are not an object, not abused, and able to grow…as a person. However, the abuse and anger they used to take out on Anthy is directed at the Utena, the Hero.
Linda and I decided a time ago that in order to make the most change in the world we needed to get inside the walls of decision making, to be INSIDE the World Trade Organization meetings rather than outside. Because of the 500 people inside the walls or the 25,000 protesting outside, to be one of the 500 could bring about positive effect to millions of people. Linda taught international business, we co-taught pink, green and grey markets. I did the research, and we worked together and decided together to move back to Canada (it was going to be the US but then ‘married gays are worst than terrorists’ election campaign made us rethink that – we already had experienced hate crimes, no need to seek out more). And then, in getting ill, I found that we had overlooked a huge percentage of vulnerable people. I faced that I had been a poor Guardian, a poor follower of Jesus.
How I had failed, and tried to redeem myself is summed up in Pumpkin Scissors. In the series Pumpkin Scissors, after the war, a unit is set up, small and originally for propaganda purposes, called Pumpkin Scissors – scissors to cut through the tough skin of war and corruption. They were to bring hope back to the people that reconstruction and equal justice would be for all. A small group of only six, they are lead by Alice Malvin, a noble who believes that justice and duty to ideals is more important than her sisters’ opinion that femininity is paramount. She leads the unit and while they are armed she usually only has a small short sword with the family crest. (a 34 second clip that will demonstrate exactly her personality).
The new addition, Randel, was part of the secret 901, the ‘will o the wisp’ anti-tank corp, who needed to have no fear of death in order to attack tanks with anti-tank guns while atop the tanks themselves. Large in body and covered in scars from doing unspeakable acts Randel is shy and grateful to now be able to make a difference in little things in people’s lives. He is devoted to Alice, who he believe is allowing him to redeem himself. While in truth Randel’s dedication to the ideals of Pumpkin Scissors inspire the rest of the team to follow Alice (who is a little hot tempered and sometimes attempts the ‘impossible’ – not like ANYONE we would know.).
To know how to fight, to know when to fight, to know how to face the impossible alone, when I am now a passenger in my own body, able at best to send messages out. It is an experience that is unique, and because of that, special (painful but special). I honestly wish, if the results were not death, for others to know this feeling. It is not knowing in your head that you are dying, or even in your tests that you are dying, or in your first body changes that you are dying. It is that state where death is inevitable. People can see it, and no one asks me how I am doing. They talk around it, trying to ignore it because they don’t know what to say. We have no experience talking to those who lie on the edge, so we read books, or we talk about the weather. Cheryl comes to see me, and she and Linda talk about how quickly I am changing, how quickly I am dying. But they don’t talk to me about it. And so I am even more isolated. At the end of Chrono Crusade, Sister Rosette lives in this state and it is summed up well the feelings that come at the end. Because Death is a bit like a dodgy bus service: You have to wait around for it regardless of how late it might seem to be, there isn’t another option. So to find small conversations, when I have the lung capacity, or small pleasures (or if I am lucky, orgasms – I’ll explain that one later), and watching the one thing I was sure I had control over alter and turn into something else: a stranger. First the body, the legs, the belly, the lungs and heart, the eyes, the arms, and fingers, all eventually strangers, distant strangers. That is the hardest part, the inability to get back up. To have to accept and not confront those who abuse power, those who abuse you, who abuse others, who try to remove choice, as you are too weak, fighting a body which seems no longer your own. But I am still here, fighting.
If you can’t read the four pages clearly, click on then and then click backspace with your browser to return. No, at that moment, I want to leave the pain, I want to die, but I won't die. But that time will come too.
I keep letters and postcards by the bed and computer, to remind me that I am not alone. And that after a lifetime of preserving choice, when I was most vulnerable, most isolated, weak and chained, they chose, Linda choose……me. To Alice Malvin, I and those who rescue us from ourselves. Thank you.
Bad news and um, bad news. I am supposed to be in bed due to a bad fall lateral from my wheelchair yesterdaywhich gave me: a concussion, whiplash, a something rotator something in the shoulder, partial dislocation, torqued back, sprained wrist, ripped muscles on four ribs and between the ribs and slight sprained elbow. I kinda went sideways and smashed my head so hard that all I saw was this red flash (it as very odd, if I had seen ‘POW’ inside I would have thought it was a cartoon) at this point my shoulder slammed down, then other parts, most not arriving atop my head. But as my head was twisted (kinda like an owl!) and I couldn’t move, it turned out later to be very, very painful. Which is why one handed typing is slow and this blog post is short (9 hours later....).
HOWEVER…..the comments were so good on the last post, and I really appreciate the people who made them, I have responded to every person, so if you have any other observations/questions/things to share after those responses, that would be cool. I want to do a blog post on chromosome 17B-3-HSB and what a Canadian doctor in Palestine is doing (which isn’t really that nice!). But that is after lust, desire and tea. Gotta take time for tea! Nice hardcover book she is reading too.
Okay, finished ALL the comments on the previous post, on Intersex, please let me know, keep the dialogue going. Text me, write a comment? I am high and low on pain killers because so sore and don’t want to lie down until this is done! So on to the important question: In school, where you the one who wrote on others with your markers? Wrote on yourself and were sent home having coloured your fingers multi-colours? Or the one who was written upon? What I found out is that in this picture, Linda went, “That’s me.” And I thought, “The crazy girl writing on people, I NEVER knew.” And she continued, “My friend F. used to write on me all the time.” - ahhh, she was the passive one written upon! For me, I was the wild one, but I couldn’t by nature and ethics force myself on others so I wrote on myself. Indeed, in high school one of the assignments I gave was to write a poem ON your body and see how the poem you write changes when the medium you write on changes from paper to your body. Great idea, and a great way for a student teacher to end up with the educational supervisor going, “You told them to do WHAT? No, you tell them to read 20 pages of Lord of the Flies and answer 10 questions, no writing on the body, non of this ‘poetry boxing matches’ you have….we can hear the screams and cheering all the way into the office! Just follow the syllabus!”
Oh, how to explain that 15 year old girl taking off her top in my class while popping gum going, "I call this: Cleavage"....uh....distract...."Would you like a cup of tea, Supervisor?" Tomorrow Linda has promised to help me bath, oh boy, rub a dub dub – is there room for two of us on the tub bench? We shall see! Linda keeps wanting to put me to bed. Which would be great if we went in together but she wants me to be in bed just because my hands are so purple you wouldn’t believe or I am ill or I still have the whiplash and I pass out a lot (is 25 times a lot? I think it needs to be like 30 to count as a ‘a lot’ right?). Basically my plan of ‘Do what I want while Linda isn’t looking and then go, ‘oops was I not supposed to do that?’ isn’t working because during my cute, ‘oops was I not….’ I end up stop breating and faceplant (messes up the hair too!). I did however get some things to send to people sorted that I have been meaning to sort for weeks – yeah! Loss of time and faceplants – boo!
If you give a damn about this blog or about me, and oddly, I think of my readers as my friends, and that I have dozens of correspondences I enjoy. So the truth is, for a while now, we are just trying to get to the end of each week. And this week, the preparation to make the final move into hospital was made, and it was Linda’s FIRST choice. She HOPED I would not regain consciousness so she could transport me to hospital, even though there is little they can do there. That is how bad it is. I am not ill, I am not dying, I am visibly declining in health at a rate which would be weeks or months in days. We talk of Sakura-con, and we talk of where exactly to scatter ashes.
I am beyond the rim of the cliff. Okay. I fell. I didn't die, but I didn't get better either. I fell down and I am on a little ledge and I hope damn it that I can get back up and climb back up, but without significant rest, like week to weeks of bed rest, that is simply impossible. And yet, with the gravel and movers, I can't rest in bed. I have had a fever for a month straight because my autonomic system is failing. I cannot sleep to rest, or even lay there. No laptop, no TV. No use of one arm.
To give a SINGLE yet graphic example of what is needed so many times a week, those 'difficulties' with my intestines means that I am in a small room, with no air conditioning, and little to no natural lubrication after daily preparation, three times a week for about FOUR HOURS. I do that so when I leave, I do not have jaundice or toxins building in my system, though sometimes, I do, and the puss comes out my eyes. When I leave, I am exhausted and I have the physical after-effects of being forcible violated.
Yeah, that’s right, raped. I am being raped every week by this disease, LITERALLY. I bleed from my intestines, from my anus. That needs to heal, only it has little time before the next time. That is one of dozens of things I have to do in order to stay alive. Most weeks I bleed from my anus, from my nose, from my mouth, and last week from my ear, and puss from my eyes. I drink 2 liters a day of water, every day, to get out the toxins. I have been drinking gatorade for years and I hate it. I hate it and I drink it. Only lately, I have been too sick to eat. To weak to drink. Because I no longer have my ability to externally do what I need to survive, my body literally withers. You would not recognize one of my hands as a human hand anymore. It bleeds inside regularly. This isn't a metaphor, this is life. This is my life.
If you care, you should know because I am telling you now, I have no interest in being told to ‘go into that good night’ or ‘fly away’ but I want to go to Sakura-con, I want to see the cherry blossoms. So, Help! HELP! Can anyone hear? Do you know what I do when for four hours I am having bits of my flesh in my colon ripped away so that I can live? When I am not screaming, or moaning, I try to read something to look forward to, I read manga. Manga is medicine. DVD’s are medicine. CHOICE is medicine. When I spend all my time, for as long as I can remember (the mid term memory problem, right?), just trying to survive, with nothing to look forward to because I stayed up and read all the new books/manga in order to stop bowel impacting and now I lay in bed and wonder how much blood is pooling around my anus. Is it staining the bed? And what I have to look forward to tomorrow? To having to do THIS. AGAIN.
That is why a $5, a $10 gift certificate matters, at Akadot, at Amazon, at Amazon.co.uk. Because then I have now what I did not have before. CHOICE. I can send a gift. I can get Linda a romance. I can get something for myself. I need a DVD player for the bathroom for when I cannot read, and for the times when the noise is so loud outside I cannot do anything. Linda found one for $50, and it is on the wish list. Will it make me happy? I think you misunderstand, it may make me LIVE longer, make it so that I LIVE the 28 days until a new neurologist appointment. LIVE until a new GP appointment. LIVE. Or if you want you can donate $50, and my first of 8 small bowls of pills costs $16, my second costs $8, my third costs $17 – three bowls of pills: some for my immune system, some for the free T4, and the rest is pain, pain, pain medication. And it helps. Kinda of like when you ask a new parent how they are sleeping and they look at you with the thousand yard stare and say, “You know, now and then.” Yeah, I get pain relief….now and then.
Never you mind, just keep thinking of me as the postcard project and as the indomitable Elizabeth with squirrels. Because you haven’t bothered to adjust your view of me with the disease. You don’t realize the level confusion, fear, pain that I live in every day. And that Linda and I work to get to the end of each week with me alive. That is why I haven’t returned your email. Yes, brilliant brain, but also a terrified child, becasue I am also someone whose only memory is pain as if someone had ripped the skin from my back with a whip of chain mail. If a friend, will you love ME as a friend, the ME here? No, not the me who started this blog, but the me who is here now, struggling, still fighting every day, but someone who is, in many, many ways, in need of understanding, and of soothing calm voices.
To say, I understand, no, to understand is to know I forget every few days, to know that everything you send gets a post it note, and so you leave messages of love for me. That is just one type of understanding. I might forget ever few days but still, to live, I have to go and do a dozen terrible things a day, every day, on and on for....ever. So for the child me, a little something more often makes the difference because that Beth made it this week (thank you W., you helped, all those weeks, you really, really helped). She is alive, and it seems that there is a ‘yes, yes, but show us, give us the posts, be there’ – I am here, because I have fought hell, and you want me to go back and fight hell again…..without a single thing to look forward to. This week I spoke to two people. This week I looked outside three times. This week I damaged almost every part of my left side and I have a cut on my face on the right. There are NO reserves. I am fighting to be here another year by being here another week. Now I am fighting another hour and day to be here another half week…that’s it.
Why the hell should I? I don’t know, I don’t know, I go crazy trying to tell people, “I care, I care” and having bits of love, tangible bits of love. No, no, not the gifts. I have sent out, in the last month, about 25-40 manga as gifts, so say Cheryl and Linda. I have received in the last month…..four? In the month before I sent out 18-24 manga as gifts, I received……(according to Cheryl and Linda)..none or one.
I know in my head that people care, I know that people send gift cards sometimes, and that is good. It makes it so I have something to look forward to, so that room isn’t just the room of despair.
I AM thankful for every bit of choice that allows me to claw an inch forward. That helps me wake up and do what needs to be done that day, because I have to look forward to deciding what CAN be done, as I have a choice, a gift certificate perhaps. Except I am too ill to be able to get out of bed for two days. I know every inch of that wall. When I sleep, when I am half awake I think that my hospital bed has chains across my legs, that it is like a walled crib, holding me down for the disease to eat another piece of me.
I want to read a romantic series that gets me aroused. Don’t you? Make me blush, find me some gentle sweet uke to grow from innocence. I read Butterfly, Flower A story where the daughter of a noble time honored family who has run into ruin is asked at her very first job interview (as she was trained to be a princess of sort), for an office job: “Are you still a virgin?” She is mortified, answers yes, gets the job and asks a co-worker, what was with that 'virgin' question. This produces a big laugh, as no one else got that questions and second, 'Who is a virgin these days?'
Her male boss, after he is so mean to her, she remembers is her male bodyguard/nanny, sworn to her. At work his is the manager from hell trying make her a perfect elite office manager, but one minutes out of work, and he won’t let her ride the train, but drives her home, calls her, ‘My lady,…” because she will always be of the noble line, and the young girl he promised to protect. Problem is, she falls for him. He doesn’t get it. She kisses him. He says he ‘understands.’ Whew, he isn’t as dense as she wondered. He continues, “you will one day meet someone suitable for you and need to practice your kissing on me, I am always here as your servant, my lady.” AHHHHHHH! What will it take for him to get a clue?
Ooku volumes 1 and 2 – put out in the deluxe edition, winner of the Eisner award is an Edo period love story. Japan has a plague which kills 75% of the men. Poor Samurai family sell their son’s seed to survive, prostituting their children. One man only has sex with poor women, women too poor for his ‘noble’ seed. In a world without honor, he decides to enter the service of the Ooku, which is 3000 males only, except for the female Shogun. There are two books so far, each book is a complete story, and together they are a complete story. Together they tell a story that inspires me to go on. It tells me that sometimes greatness is not having a title, or being famous, but in being there, simply being there for someone who is wounded in the soul. Like chicks huddling together, I can identify, knowing only the hands and hearts that show love, my memory is in who I shrink from, and who I lean against. It is a yaoi romance, it is a straight romance, it is a romance for all time. It is about the after-affects of rape, and the pain and suffering that come from it, as well as the cost of keeping ethics in a place where all people care about is position and power.
I read the whole series of Cynical Orange, now done, in nine volumes, the retelling of The Little Prince, as The Little Princess, a girl lost and the idea of appearance, and dependency.
These aren't manga tucked away, just something I read on the bus, this is something I read after I pray to God, “Please, let it be over, let it be over quickly.” I read it when the tears of pain are cleared from my eyes,because I don't want to smudge the pages. I grip the pages and try to read the text, because it helps to relax, to have something to look forward to. It makes it easier.
Before you tell me: The magic bullet (anal suppository) does not work for me. Senecot does not work; Milk of Magnesia does not work. It is not just the colon, it is the whole system. It is what I eat to slow the blood that comes down my intestines congealed to the sides of shit, the blood that runs down my intestines, pooling in the colon. It is the roughage I need so things move, yet same roughage that cuts me up (but less of that). It is the balance. A single carrot, can leave me bleeding for a week.
This is hell, but it works, and I live. I live and manga is what keeps me sane. And every person who gives a manga, there is a post it note with a name, and in the middle of the night your name is whispered, “Thank you, thank you, thank you.” Because you made 30 minutes something other than rocking and letting the tears fall.
Someone wanted me to put the medical stuff up at the top of my wish list. I didn’t understand. It IS.
To be somewhere else, to feel something else, to want to be in an adventure. Now, so disabled, I am a child again, emotionally, and in ability. I dream of things I want to do, of places I want to see. And books and manga and DVD’s and artbooks are the way I do that. They are the way I communicate to you, and the way I communicate to me.
Do you remember the wonder of a child, of exploring a place, a simple building that you had never gone in before? And inside is a wonder, you learn it is a pipe organ but for you it is a wonder, and there is a kind adult there who listens to you, who tells you about it, you maybe lets you play. These are the emotions I seek.
I cannot go outside, I cannot wander into buildings, and I am entirely dependant in my life on kind adults, and yet totally at the mercy of cruel ones. “Why do things have to be so hard?” Linda says, “I think about it and I don’t know, I don’t know why.” We just hang on, go on. I find wonder in art books that I get from Japan, where the diversity of art is amazing – Pop, one of the great Artists in Japan is doing the entire fairy tale series, from Red Riding Hood to Little Mermaid – there is one on my wish list, as it is translated to English. What person with a serious degenerative disease does not understand Little Red Riding Hood and how hope is turned into despair?
Well, on to the slumber then, the mess of a slumber party is a lot more like THIS, with people waking at different times and snacks and crying and living. Not quite the lesbian lingerie parade. This is human.
I long for the spring, I long to read Ooku 3 or Butterfly 2, which Linda says are not soon but not far-far either. I long to get art books. And I long to give out the presents to my friends. Sure, I feel like the kid suck at home sick over summer break, when everyone is too busy to remember, because that is who I am. I still open myself up, wide open, in every blog post. I want to live another year. And I pay, I bleed in bleakness each day to do that, each hour of each day. And right now, well, it is too damn close. Losing is dying. My dreams are in red.
Let me just think of the spring, when the cool means sweating or not doesn’t matter, and I will have been able to have my hair cut and will be outside, reading a book for....pleasure. Linda reads to stay sane, for both of us; I read because if I scream I will wake Linda up, I read because I want to be at a ball, or talking to people, or working at an office, trying my best. I am so willing to join the author and fantasize. But sometimes, I do break down sobbing when I have to come back here.
however, being not only a continent but also an ocean away, I would need Chitty-Chitty-Bang-Bang as my vehicle to see it on a road trip. Too bad that, you never know when you need to learn about poisonous plants, and they always suspect everyone ELSE but the woman in the wheelchair (insert odd crackling laughter here).
Apparently it is NOT a blue vase (no this isn't the Matrix), but it is a titanium vase which due to the infusion of titanium which actually absorbs instead of reflects light, the blue is what colour escapes. So it is every colour BUT blue, or the blue like in why the sky is blue and is a vase which is an optical illusion having shifted the colour spectrum through the materials. I think that was the explanation. She uses a lot of different minerals, in order to get special effects, and I never heard of a pottery vase made with titanium before. Maybe someone scientific out there can explain it better?
On the trip I hope to get more good animal postcards because we pretty much are cleaned out, that and really good stickers, which most of them we got sent to us somewhere near San Fran, so will go search there. Actually, I hope we get lots of really interesting postcards as we go to the Redwoods and other Big Tree National Parks, and Yosemite on the way back. Also to the Oregon Coast which is supposed to be gorgeous (I hope THEN it is sunny). And of old San Diego, I hope it is still as I remember, the old Well Fargo building.
