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.
1 day ago