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.