“You look good.” was the first statement of the therapist after the door was closed. Did I have to overcome some TV/movie idea of 'terminal', since someone with stage 4 cancer in the bones and lymph nodes can look fine….for a while. One advantage of autonomic failure is I will make a great looking corpse. Of course the 'look good' is more a wall of misunderstanding than a statement of genuine assessment. Another wall I have to vault. I explained some aspects of my condition, and give examples, which got ‘Oh my God!’ interjections. So I am not 'one of us' now?
“Are you SURE you have treated palliative or terminal individuals?” I asked. And repeated that 'Yes, my heart stops while I take in a breath.'
I watch the widening eyes, “I hope that doesn’t happen while you are here.” There is a look of fascination, a desire to back away and worry.
A fatigue of hundred explainations, “It IS happening now, just keep an eye out if my left arm withers or turn purple, that I will need to do something about.”
“Oh my God!”
What did get an exclamation, and what did not became interesting: Sexual abuse, self harm, family abuse is taken in stride, same old, same old. But finding out that I don’t see outside, not even a window, for weeks, and did not know if it was sunny or raining that day until I left due to the soundproofing for noise over my windows gets an “Oh my God!” The idea I would knowingly live in cell, choose to, so that I could live is shocking? Why?
The counselor noted that I was a person who spent a great deal of time making sure I was going to live that day. They also did the ‘We could both die of us at any time.’ – a phrase stated to me so often and so facile I just leaned forward with a hungry leer and said, “Want to change tickets?!” That had them rearing as far away from me as they could. Oh, so I guess they do not QUITE see their chances the same as mine. Oh yes, it is true they could get hit by a bus, but unless someone was holding their head down on the street pavement to watch the bus approach, it isn’t quite the same. That statement, "We could all die", "We are could all die tomorrow" is a form of "Shut up! Shut up! Shut up!", a reaction to try to unmake the words and topic. The topic is unmade by making it universal. Don't believe me, try it for pregnacy: "I'm pregnant" Response: "We could ALL be pregnant." - a snub of 'so what', a reduction of one of the significant life stages to a 'who cares'.
In leaving, as I maneuvered INDY out, I asked if the therapist would be disappointed in me if I burned most of Victoria down the next meeting.
No. But why the burning?
“This town.....it needs a Hard Rain.” That got a hearty laugh. Not the typical reaction to questions of pyromania, so maybe this will work out.
Hope. That was a topic, since I am still searching for desires, hope, goalposts to fight toward. The hope of living, not for years, but living, and the hope of looking ahead to something. I have noticed that helping with or providing hope is something we are particularly bad at. We offer little hope to people. I think someone wouldn't kill themselves every 16 minutes in the USA (how often a suicide succeeds) or why so many people struggle with depression if we had a better handle on hope. It is one of the big three: love, hope and faith right?
The therapist said they dealt with THOUSANDS with no hope, and FEW of those were terminal. I got angry. Another deliberate attempt to misunderstand? Why ask the questions counselor only to become reactive in the answers. Another diminshment of an issue. I gritted teeth, “No, not depression, not androhenia, no!” So many assumptions: that I would not know what depression was, would not have experienced it, not gone through days without speaking, ached with the physical pain of depression, but like so many, managed to hold on.
When I was in Wales, they announced the sanctions of mad cow disease. There were no exports at all, with no relief for years. Southern Wales was already in an agriculture depression where buying an entire lamb or sheep cost about $1.57. This was hope broken for farmers. No way to survive, farms in the family for generations, for hundreds of years, would be gone and now no hope of even selling the cows they had as no one would buy British beef. And so every day a farmer walked into the shed.
That is what ‘no hope’ looks like, they don’t stay around to try to find some.
A shotgun in the mouth and day by day, the suicides grew and no one did anything, since what was there to do.
That is me. That isn't me. Oh, I am SO tired of trying to keep the body alive, and having those care giving focus and see only the body and ignore ME, Elizabeth. I twice in three days took scissors and pushed into my neck, my vein, wanting to bleed out. The disease owns the body, and I am on for ride, and when even I disappear behind the complexity of the disease making my body a puppet of symptoms, then who supports me after I burn out trying to keep the body alive? Linda had told earlier of a man with Huntington's who died, after two attempts of overdose, with self starvation. They weren't end stage. But their GP and the VIHA mental health team thought this a ‘good’ thing. He died a week ago. A 'good' thing? Why, because the body, the disease is all people can see, and it terrifies them? When the people to preserve our lives think self starvation is ‘good’, it is echoes of ‘If I ever get in that state just shoot me.’
Stage 4 cancer? BLAM
A farmer? BLAM
No, it is only that which changes our bodies forever which terrifies the most. The destruction of the brain, the idea of pain unending which makes people silent at best and 'shoot me if I am like YOU' at worst. The same team which works with anorexics to live, work with mid stage terminal diseases to die. The same group which tells those who have to fight to do what is hard, and face ahead, in order to live, are running from their own fears, and aid others to do the same. When I die, if assisted, it will be AFTER facing my fears and past them. Not because I am lazy and scared and want to take an easy way instead of the hard of finding a way around the worst of the disease. But that is the nature of fears, they become all that I see, all that people see, until I just want to lie down, and put the decision on someone else. And so do they.
I don’t know if I have hope, but I do have reluctance to accept defeat. I have two letters, still unsent. One letter is over two years old. I wrote it to email those in fencing clubs, fencers I knew, to tell them that I enjoyed my time but I would never be able to return to fence and thanks for being part of my experience.
I sit in Indy but I can’t accept that there isn’t a way, like staring at a chess board, some series of moves which can lead to fencing or training for a competition. It is the same with the letter I have which is a thanks and a goodbye. As long as each day slots in, how do I send that? I won’t give up. I have promises to meet people at Sakura-Con. But that’s not the same as hope but it is a sort of obstinacy: my flag raised and “I have not yet begun to fight”.
Sigh, the 'experts' on dying, the writers of books on the stages of dying are based on able bodied views and ideas. They are full of the desire, the need to believe we can put rules and fences around messes of the uncontrollable. Would we expect sex books written by virgins ("I have observed thousands of people who have had sex" - errr...that makes you an 18 year old virgin with a large porn collection). Bah.
Welcome is sleep, more welcome sleep of stone
Whilst crime and shame continue in the land;
My happy fortune, not to see or hear;
Awake me not, hush, whisper low.
Michelangelo Buonarroti, 247 a.d., rome
I know that feeling, but it is the temptress' call. It is not MY voice.
I watched Dexter season three and already he has ‘mercy killed’ someone with Cancer. Not what I am going to offer my friend with cancer when I see her later this week. The comments of people at the office who ask each other if they are going to go see their co-worker, no, no, but if they ever get like that, put a pillow over their face. Now that IS the reality, they have already killed the bonds, put themsleves into a 'welcome sleep' because this means facing the idea of DEATH in complex reality and an ugly death at that. So no, they won’t visit, but yeah, they will openly talk of killing her, because ‘what kind life is that?’ I dunno, why not visit and find out. Apparently none of heard of 'remission.' That includes the character whose convincing arguement is not that things are worse but that the cancer is slowing. "Oh my God!" - they are going to be here, dying, in front of me? Quick, kill them off. Though Hollywood and TV characters are all too ready to die off, I can assure you it is not the dying that hurts, it is the living: so show me a heroine that lives, when it is hard.
I read yesterday The Hunger Games by Suzanne Collins, a US remake of Battle Royale: story of after an uprising against the central elite has created 12 districts which annually have to give 'tribute' of 1 of those aged 12-18 drawn in lottery. They go into a televised death match,a reminder never to rise against those in the central area. It is why I want to read the original book Battle Royale (on my wishlist) which started the movie and manga. The Japanese work on a different premise like in the Manga Ikigami where all children are injected with vials and at age 25 they become inert but before then, 1 in a 1000 will die. This, all are told, is to help the rest of the population remain productive and not to speak out against authority. Both are to help people appreciate their own life, but in reality the resentment remains but with the consequences of death of yourself or your children it is blackmail on a national level. It is a criticism of the current and past Japanese governments who put ‘production’ and ‘the nation’ above individuals.
Sadly, The Hunger Games, being American with a female protagonist has to not only have an upbeat ending but also a romantic interest (and remember, no female in USA media entertainment can be hurt, particularly in the face, or bad). It is well written on an entertainment level but combo rip off of the darker Japanese Battle Royale and Canadian The Fly by Cronenberg. But in a death game where 24 youth enter the area and only one survives, our heroine never willingly kills anyone. Yeah. She makes friends, IN a death match, and does kill a guy while defending a tiny 12 year old girl, she helps the sick and does a mercy killing. Only one can be the victor, and that is on the death and bodies of others. Not so for our heroine. She is burned but gets sent medicine to make herself all better, she has the technology and without choosing her own morality of who lives and who dies, or even accepting that she can be a killer she still wins: a warm fuzzy GRRL-Power Lord of the Flies (and being the US, includes sponsors for individuals – this is TV after all!). This brings up the idea of watching your youth die on TV as punishment, while the idea that people would simply not watch is alien. Not watch TV?
While Hunger Games is a engaging read it tells me a lot more about North American, as it is a New York Times Best Seller. It sums up the ideas people have about Iraq, that it is about making friends and killing only in defence, and how deep down, everyone likes you (your nation). And how while all HER wounds are patched and forgotten the tens of thousands of not-patched up soldiers are also forgotten as are the psych reports where the majority of Marines and Army individuals admit to stealing, and abusing civilians, 1/3 of one group admit to rape and killing just because. Torture goes on, but it is seen and then forgotten. Such is the historical problem of projecting stereotypes so all acts, no matter how brutal or cruel are 'good', from a nation of 'the cowboy with the white hat' is what the Department of Defence reports show is happening. And death? That reality was suspended by presidential decree - if we forbid it to be seen, and most important coffins are never seen on TV, then it must not happen?
Why this willing blindness in Canadians, and Americans? The British have the bullying of children to know how nasty they can be. But to have a President of the USA enact a determined extermination of a people due to skin colour and history, akin to the German laws of the 1993-1941. First in Germany came disenfranchising and then killing off the Jews, Gypsies, Gays, Priest and others. The USA history has a US president who vowed to eliminate every ‘Indian’ east of the mississippi. A nation watched the death march. A President, Supreme Court and Senate packed with Klan riders, or sons of Klan riders isn't conspiracy, but history: the revisionist film of Civil war as a KKK victory Birth of Nations premiered at the White House. In depressions, states closed borders on the 'have nots' while the lynchings of blacks went on. And those thousands of deaths still won’t get even a written statement that is was bad through senate but the answer to all of this is “Shush, Shhhhhhhhhh!”, "Why dig this all up?" Maybe the self proclaimed leaders of the world should have SOME standard or accountability other than, 'spin things once caught'. Or maybe the leaders ideas and actions filter down to how we teach our generations, ourselves, how we act in parking lots and to those different than us.
The origin of the Guns and Butter economic model is unclear but may have come from American WWI Secretary of State William Jennings Bryant. It is a simplification of National priorities in production and economics toward either ‘Guns’ (War, Defence, Military) or Butter (Good, export, improving infrastructure, quality of citizen life). Every country has to choose a balance. Japan for example, though not allowed an overseas deployment army (broken for the Gulf War under US urgings) still has to pay for a domestic army (the ‘Defense Force’), as well as the 66 US bases on Japanese soil. PLUS Japan pays a ‘cost of defense’ determined by the US and charged since WWII and now is over 5 billion US annually (plus since 1978, 5 trillion yen has been spent on US bases, which doesn’t even include the tax, but comes out of the ‘sympathy fund’). Japan is in the top 10 of GDP of defence but they wante more 'butter' and less 'guns', feeling this 60+ year never ending tax on acts of previous generations cripples present ones).
"We can do without butter, but, despite all our love of peace, not without arms. One cannot shoot with butter, but with guns." That quote doesn't come from the Pentagon but Goebbels, as Minister of Propeganda. While the US invests the most according to the Stockholm IPRI of any country in the world (More than the next 15 countries combined, and that includes the other nuclear powers). When the USA has over 40% of a the world share of expenditure as 'guns' while another major nation AT war has it at 2.1% there is no question where priorities lie. However publically the USA does not want to choose between guns and butter, it is easier to ignores the effect of 'guns' than to change and invest in ‘butter’: like citizen quality of life, like including the abandonment of wounded and homeless veterans (over 260,000 US veterans are homeless - 'guns' but no 'butter'), the only first world or Western Nation without nationalized health care, and the largest per capita population in prison or having been in prison.
The arguments for 'guns' are old, and it is why I am interested in the manga Jormungand Vol 2 (on my wishlist) which examines arms sellers, arms buyers and this idea that with enough guns there can be peace. And the idea that the side with the best weapons, or the one with the best training make peace (and that in this manga they are lead by a female just makes it more intriguing).
It is this willing blindness to openly accept a choice is not a choice (The percentage of GDP and the monthly $70-100 billion military overruns being approved just...happens.....annually), or face any choice which has been made and the outcomes from that is one which shows up over and over in US and Canadian literature (and society). It happens with different variations in every nation. In the UK, they ignore the rampant racism which is entrenched culture or as one man said to me, "Used to be, it was good fun to trash a 'Paki' shop or take-away on a Saturday night. Now, I don't mind a bit of a take-out or a Donar or Kabab." In a recent survey, the dish which represented the 'national' food of all of the UK was 'a Curry.' While few brits can make mexican food worth a damn, everyone knows how to make a curry. This racism is slowly being approached in film (Only barely the hatred toward those of a generation or more ago from the India subcontinent. Things like the exclusion of those from Hong Kong has yet to show up). More films appearing about the treatment of those from Algiers in France.
'So what?' What is why the murders and attacks of Muslims, Muslim shops and murders after 9/11 show that there is a willing blind eye which socially is part of the culture? In the UK, a one legged Kurd man who had ESCAPED Saddam was beaten to death on a Sunday outside a pub in view of over 25 people. The Olympics are over and it shamed me that an immigrant nation like Canada displays itself as primarily white and anglo (the speaking of French, one of our ‘official national languages’ was non-existant – including intervews by the 'official' canadian coverage). The US, where whites are the largest minority in a nation of minorities is still shown as a country of white colonization, white achievement and white pride.
Despite all of this, I am sure I am culturally blind. Sure, I know that Japan is one of the most Xenophobic, sexist countries where stereotype runs wild, along with hatred of Koreans, the assumed clumsy and stupidity of whites, all slotted into pigeon holes. The urban is both loved and hated,the traditions and urban both ritualized and abandoned. However, Japan, due to the war and occupation of the USA until the mid 50’s has used literature, even popular and family literature like the anime film, Grave of the Fireflies (on some children trying to survive post-firebombing during and after WWII), to examine the repercussions the decisions made today will affect the future. The youth are referred as 'the leaders of tomorrow', and the question comes over and over, 'have we done well enough as our future is in their hands already?' They ask: Will the future have no resources, because of what we do today and how will that look? Will we lose our historical rural for only urban concerns? (A question many countries should ask) Will the governments become dictatorships as time goes on to retain control? The rise of NEET's (single, mostly males who drop out and stay indoors, never leaving, ordering everything by internet, no job, no interest in the outside world) worries Japan.
After all of that, I don't 'do' politics. For me, the history, and politics of the countries are just a way to keep track of the great soap opera which is the interactions of nations. I want to track the people, the desires and interests of the West, primarily USA, Canada and UK. Spikes in Mass Phenomenon tell me that the population has an unmet need. Right now everyone is Vampire crazy, but not BAD vampires (which have traditionally been code for sexual disease, abuse), but GOOD ones. The number of vampire books have been increasing over the last five years and now have exploded in number. These “Mass Movements”, or when people suddenly believe something that seemed of no interest before indicates an unresolved desire, at a mass level.
If I told you that the very people of the USA you work beside said they believed that Aliens existed and the US government had met with them (over 70% did!), you would find that hard to believe. But surveys in the late 80’s and early 90’s found just that, when X-files and government conspiracies were a mass phenomenon. Why? Well, the entire structure of the world was changing very quickly in 1989, the East-West Conflict had disappeared and instead of stability, while people hoped for the USSR to return in SOME form, instead countries were splintering, with old vendetta's appearing, seemingly random killing of each other, change was everywhere! So the idea of a Big Brother watching over us from Space was a nice one. So was the idea of a government that HAD a plan, who had secrets and could keep them, for the good of us all.
So, why do so many people need or want to believe in Vampires? Since the books and film of Twilight there are communities sprouting everywhere online (going viral) of those with vampire experiences but more often those who say they ARE vampires (and feed off energy for example). Would the percentage surveyed who believe in vampires be over 50% yet? Maybe. But why?
Vampires, or Dracula, came from a fear of the effects of Syphilis, the very sort of mental degeneration fear which makes people uncomfortable about me, and so quick to try and come up with a 'shut up' statement. Vampires, like the dying, have always been 'the other'. But now that the age of free sex is back, with HIV seen (only in North America and the UK) as a ‘livable condition’ and just another sexually transmitted disease, what do these new Vampires mean? They are not 'us' but not seen as something to shut up about, or the dread 'other'. Certainly it is in some ways similar to the last mass phenomenon, the idea of being ‘special’ from the highly racist books of Harry Potter is evident (Having names like 'muggle' and ‘mudblood’ exist in ever country, just often called ‘Coon’, ‘bug-a-boo’, 'Dago' or other despicable slang for those whose blood is not like ours, and thus not as human as us – while blood showing who is superior, traditionally shows in the color of skin, is transplanted in Harry Potter for ‘magic user’ and in Twilight as 'sparkles').
Yet, in almost every vampire book the narrator and protagonist is NOT special except to have a vampire in love, thrall, friendship with them. They are special because of who they know. Why? I don’t know. Are we a generation that desire protection, a protector? I suspect it is part of the idea of this powerful person or group which will ward off the effects of another powerful group. Vampires have always been popular to subgroups (GOTHS!), but rarely do we have a majority of the population, of academics, of everyone reading the popular literature of vampires (this has been a boon to Manga published in English as companies on the verge of bankruptcy still are able to publish Dance of the Vampire Bund or other Supernatural stories). Manga, coming from a different desire and premise, shows a far more violent and realistic in the way people act (for example, in Twilight the main female character falls for an ostracized outsider but is bullied by….no one - because deep down they all love her - wha?). Really, what an amazing school is this, and not the one in Forks, that is for sure (where there is 'peer pressure', 'bullying' and normal humans straight and gay
. In Twilight, there are no gays, and the main character ends ‘beloved’ by the entire family of vampires, protected and accepted. Why, why, why?
I don’t that one know....yet. But I can figure it out. However, my last read Korean Manga, or Manhwa, called 13th boy, is harder. It is about a girl who has been dumped 12 times. She tells her 13th boy on TV she likes him, he agrees, but she soon dumps him to dump the 'false relationship' and really get to know him and him get to know her (????? - hey, she is a teen and hormonal!). Meanwhile her pet cactus - who is her best friend, named Beatrice, turns into a human at the full moon. This is explained because as a child she had another child give her beatrice as a present, because she was so lonely and it made the cactus 'special' (into a sort of werewolf cactus). Only in this volume, the cactus, who is a GUY but has longer hair and is more beautiful than any of the girls, has found a guy he has been searching for, and declares his love, before running off (to become a cactus again). Problem: That guy is, of course, the 13th boy who main character is trying to get fall in love with her. So she is in an unknown love triangle between her, her cactus and possible boyfriend. It is great reading but what does it mean? Maybe too much ink in a small space when plots were being discussed? And hey, why shouldn't a femme gay were-cactus want love?
We all have desires. For me, I am still looking for a hope that can pull me through the hours of extreme pain and insanity that comes with helplessness and pain combined (which delayed this posting by a day). Ss the therapist said when I told them, “I don’t believe in heaven or hell.”
They interrupted, “You do, you’re living in hell.”
Is that true, is that how I see it, or how they see it?
They also noted that I stated but did not complain, and they can’t help people who smile and joke about horrific things. What the disease does to my body I cannot stop, and I accept that. I have to shape my time, plans, and what my body can do around that, but I am a human (I hope) and I have desires, from hope, to nesting (having things nice to touch, to read, to have nearby), to arousal. I am still a sensual being.
I have noticed that people sensually tend toward one sense in daily life. There are those who love music, who live for listening and loving so many different musicians. We all need an i-pod, a turn-table, an instrument to play: music is culture. Others love film, or art, and the visual world. Others are aroused by taste, and to them cooking or eating food, cheeses, good wine is the high of enjoyment. Food is life, no? And then there are those like me who relish the cerebral. "If I have money I buy books, and if enough, a little food."
For me, it is not just the cerebral, but that warm glow I get inside my mind when I am reading something that sets me alight, which makes my thinking faster, and blazes brain pathways. To read something, be it a romance, or a children’s book, if it is the right book it will set me alight, and there is nothing quite like that (except sex, which is something altogether different and as one quote says “Sex is…..sex. And no, it doesn’t taste like chicken”). But reading about sex, and romance can be an experience that connects the brain to um, other parts parts that get tingly, yum (Linda likes romances, I added some new ones to the wish list) but also she LOVES garlic in food, and that is why we had a little funeral for her garlic press, and she added what she hopes is her new garlic press to the wishlist. Linda is aroused by sleeping in, by good food, by making food, by a clean counter top and time to read a good romance without guilt. I love what makes my mind buzz, from the TV show 'Life' to the UK show 'Being Human', to great manga, to books, to images and even little figurines from favorite artists (the heart wants what the heart wants - how to question the heart?).
I was hoping that if people were willing to share wishlists they could put them in comments. But if you have a 'nickname' I realized that would give away real names, so maybe in emails to me, and I could put them in a file – Amazon wishlists. That way though I don't remember now, I can look and know when I give presents if it is food, or music, or films. And how do you escape, and what you desire. I respect desire because while ‘I think therefore I am’ defines US, we interact in a society in part based on our desires, particularly now that disposable income is possible. To love the smell of fresh tomatoes, mangos or strawberries is part of who you. And wanting to know who you are is part of my desire. It is why I study these spontanous mass phenomenon, because I can't be YOUR vampire, but maybe I can send you some good vampire books?
Or books on animals, on wolves? I like animals, and most animals like me. Part of what my Grandfather and being Canadian taught me was to see the animals and nature as something that is what it is, and that I and other humans who just decided to plunk ourselves down here should get out of the way. I am very happy to see whales, breaching and swimming the pod to where they have gone for hundreds of generations under the waters around this island, but I don’t want to destroy that by polluting or driving them off in order for just ME to see them (also why I want to read the manga ‘The Beast’ on wishlist – about a boy who grows up in Africa, interacting with the wild animals, with only one girl accepting his social difference as just that).
However, the whales, grey, right, sperm and killer whales seem fine with one rolly-polly ferry and it slows when they show up on radar. They accept us, as...an 'other' but not a feared 'other' anymore, I hope. Much as dolphins and porpoise find sailboats a new game to play with, jumping out in front. But that is why we don’t shoot the wolves or cougars on the island, even when they come into town. Because this is their island, and if we can’t learn to share and respect that, how can we expect any future world that is not a giant desert? And that is not good for aliens, magic users, vampires or even humans (if I finally get these sound barriers off and the world is a desert apocalypse - I WILL be pissed).