I recommend the film Assembly (a Feng Xiaogang film) depicting Captian Gu during the 1948 Chinese revolution until 10 years later. It is produced out of Hong Kong, and now that China has access to Hong Kong film makers and Hong Kong has access to a 1.3 billion person film audience, amazing films are being made. This film is quoted by many critics as ‘outdoes Spielburg’s Saving Private Ryan’ and won the Best Film in the Asian Film awards for 2009. The first 35 minutes is pure, war, not ‘fancy war’ but dirty war, shooting through brick walls, using what you have, and no replacements as we follow the 132 men of this company who by minute 12 are now 47 men. They are assigned to hold the mine, on the left flank, with a series of trenches. They are outnumbered at least 20 to 1. The commander of the Army and the Captain Gu are the only two left of a Guerilla Company that fought out of the caves, and then through WWII, and now are in the Red Army against the Nationalist (white army). They captured a mountain gun and the men are very good with explosives, making mortars out of 50 lb barrels, and that is all they have to defend with, besides bolt action guns and two machine guns. The enemy has artillery, tanks, and infantry. Each man, no matter how blown up is put into the mine during a lull because as Captain Gu says, “You won’t have the energy later.” They were ordered to stay until Assembly was blown by the bugler. And if not, they were to fight until the last man.
But that is only the first quarter of the film. Gu, found later after working his way back over weeks and months, is partially deaf, having put on a soldiers uniform after a shell blows his to pieces is believed to be a Nationalist and lying. The Army has new names and no one has heard of his company or battalion. He volunteers for artillery and stays in to fight including the support of North Korea against the US (interesting perspective there), injured again. In trying to prove his company exists, he convinces command to return to the trench and mines only to find….that it is now a high operation coal mine and the small mine openings are buried, along with all of his men, under the coal. He spends the rest of the film trying to change the status of his 46 men from ‘Anonymous’ to their names. It is painfully emotional, as his friend from North Korea and now Base Commander tells him, “This is not a road you want to go down.” Only at the end of the film can your questions be answered, and the final story of the 47 both back in 1948 and as Gu, a blind and deaf man, tortured with the thought that ‘The Assembly’ had been blown but he had not heard it, finds the truth.
I watched that when I was sane enough after being sick. It was nice to think about something other than, "Will I die? What colour is my pee? How many white blood cells can I see? Is there blood in the pee?"
With autonomic failure, and without the ability to sweat, peeing is the only way to release any toxins or dead cells. After laying down I was too weak and ill during sleep and after to pee and so, because I have retention (the muscles to release the bladder and push on it to pee are locked) I backed urine into my kidneys. Even now my liver is…fragile.
When I got to the toilet, my hair hanging down was jumping as my body shook in spasms to my mad heartbeat, going faster and more erratic in hopes to cool me down. I did not look in the mirror because I did not want to see if my eyes were yellow. I decided to sleep and throw the dice since without any knowledge of autonomic failure and being inside the equivalent of a rubber body suit, any delay in the ambulance bay, in the ER, any mistreatment would result in brain damage. Ice under my head, and cold cloths on my forehead by my care worker who would not leave until Linda came to continue icing the cloth as I heated the cooled cloth in under two minutes (Thank you, thank you!). I was having micro seizures as the extra strong beat of my heart among the erratic heartbeats push super-heated blood into any damaged area. Finally my temperature dropped to a fever state and the heart slowed. It has been erratic ever since, and I fear may be permanently damaged.
Sleep, pee, drink and sleep then pee, then drink. It was all I remember. I finally could stay up for 2 hours and then the fever came again. My body had seperated into the two sides, red side and white/yellow side. My face was beet red from heat, not just flushed but red on the forehead, the whole nose, all the way down to the chin….but only on one side. By the time the fever broke, my face had lost weight….but on one side (Cheryl noticed before I mentioned it). My arms and hand was red like a fire engine, I told the evening person how red it was earlier, and looked down to see my hand, arm, up to the shoulder was just as red. Blood screaming to sweat and cool the body, but unable to. My disease had changed my face again. I want to wear the sackcloth and eye slits but no.
People often have two responses when I talk about my disease and the pain, one is to ignore, like I never talked. The idea that it hey it is just Elizabeth, 'EFM' after all, and her condition is weird and painful (and thus somehow pain is okay..for ME). This is set up socially in terminal disease culture where immediately the HEALTHY person is given counseling, has a stack of books of dealing with THEIR pain. There aren’t really any books on dealing with pain of terminal levels, or the path one has to take in order to live while dying. The attitude is, ‘They will be dead so….’ – what is unspoken is, ‘so YOUR pain, you healthy people, at their loss needs to be addressed as does the horror of those late nights of groans and agony we will never know’. For those who HAVE the groans and agony, the idea that only the person NOT in pain is having 'issues' is a rather hurtful one emotionally.
This is reflected in the other common response which is ‘I can’t know what you are going through.’
Well, honestly, no one can understand or know what anyone is going through whether it is how it feels to go down a roller coaster to childbirth, even though that is an event which happens to billions. But since I write a blog to try and help people understand, to connect myself to others, and this is my only link to the world, while I can’t understand the frustration of EDS, I try. While I can’t understand the slow alterations of self identity and the physical pain of muscle spasms of MS….I try, and I apply what I do know from my life, and the rest, I read, or talk to people so I CAN understand.
But, for most people, the fact is they do not WANT to know for a very simple (and they think 'good') reason: what is happening to me (Elizabeth) is not happening to them (add “Thank God”).
They would say, 'Who WANTS to know and understand the changes of identity when a disease alters your face in two days; when you are in pain and fevers for months?' Well, I would think everyone. Because the biggest lie is in the statement people make like, “We could all die tomorrow.” Or “We could all be hit by a bus.” That, not only a ‘Shut up, shut up, shut up, I don’t want to think about dying!” response but it is also wishful thinking to the level of fantasy.
Why? Because though those kinds of statements are the most common response to being told a friend, colleague, loved one is terminal, the reality is that the person who says it will NOT die tomorrow (chances are very, very, very, very slim) and the terminal person will still be terminal. And the healthy person will NOT die by a bus, or even in a single day but will indeed die the kind of longer death they have just been told about: perhaps cancer, perhaps starvation in older age (and if you think it is FUN or 'okay', well, you thoughy people who were 35 were ancient and slow, and now you are 35 or 40 or 45 - are you ready to die, or say, ‘Life isn’t worth living anymore because I am not 21!”? Ha!), or heart attack then bypass, then shunt, then more pain, until failure or a blood disease. That you might be 10 or 20 years older is not going to make tumors you can feel pushing out your skin, as you vomit, with constant nausea any more fun (gee, turns out 65 year olds don’t like extreme pain and dying either….odd that). So in fact, you may have EXACTLY the same thing happen to you (late stage lung cancer or heart cancer has this type of autonomic failure I have - see, you CAN join my club). So it would make sense to be kind to the present incarnation of your possible future, would it? It would make sense to tell them that you are trying to understand, because you or a loved one, or a friend has a much, much higher chance of dying in extreme pain from a disease which also has dysautomia than they do ‘being hit by a bus.’ And so perhaps treat the dying, me, and those like me as you would want yourself, a loved one, or a close friend treated not IF but WHEN you have whatever "it" will be. Only no one wants to think about that. Here is the open secret: EVERYONE DIES.
But every time a person tells me, and they do every day, that ‘there is no way they can understand what I am going through’ it only makes me feel further and further from humanity. When in fact, I AM the face of human. We are born, we die, we live, and so we suffer. And while you may not be terminal, that does not make YOUR pain or chronic disease any less! Nor do I try to stop trying to understand it, and to treat YOU as I would want to be treated, with that dignity and understanding (I screw up sometimes, please help me when I do, as you can).
For me, I am just asking others to stop pushing me away verbally, because I feel like I am out in outer space at the edge of a black hole sucking me down into silence. And on the edge of the black hole are people who, with their language and words, push me further and further into that black hole, from which I am alone, forever until the end.
My pain matters even though I am terminal. Just because I have been in pain for hundreds of days does not make me an endless bucket which can withstand pain of any kind and level. Yet, I am often treated that way, talked over, joked about (in real life, by doctors, by people assessing my pain levels, and yes, by people in the web world). Having your heart physically hurt you all the time isn’t that funny, though I may try to make a joke about it. It is my joke to make, and there is humor which CAN come back. A humor which acknowledges the fragility, and cradles me in understanding or caring, and then there is the OTHER humor which just hurts emotionally and states, “Cool, you thought you were going to die and now you have claw marks next to your bed in the wall!”
As I said to one person who was trying to be ‘caring’ for me, standing above me while I was in bed. Only they were saying all the worst phrases including, “Hey, we could all die tomorrow’ (yes, but I have a fever now).
After a while I was tired, so tired of it and asked, “What is the worst pain you have ever felt?”
I must have asked it in a very intense way because they got quiet and then after a long time they said, “I don’t want to talk about that time.”
And I looked up at them, full in the eyes (well, the one eye that was working for me), and said as I could feel my control slipping away and the bands of pain rising in my lungs, “Then you might want to leave before the screaming starts.”
And they backed away from me. They didn't want that part of 'caring' then.
If the worst time you have been hurt, or been hurt by another, if that isn’t something you like to put out for people to joke about or if you like to have dignity attached to the weeks/months/years of suffering and rehab you went through after an injury – that is the way it SHOULD be. But then maybe standing over someone and trying to tell them in different ways to shut up and just, you know, suck it up, or laugh it off, JUST because they are terminal and while you got better, you know they never will, that isn’t really very funny.
It will never be funny. Because the dignity you take away as they sob, is the dignity which you will be stripped of by the next generation when it is your turn...unless we stop doing this and admit that we are going to die. And treat those who are dying better: Try to understand, respect the efforts they spend and sometimes, realize that we ALL HATE visiting the hospital. But also that time spent going out for coffee could be giving a person who has seen no one face to face for over a week, ten minutes of being treated as an equal human, in an accommodating and loving way.
Okay, insight over….FOR NOW. Don’t make me take out the big book of fatal fairy tales (Gorey might have done that). The one thing I learned beyond that day after day of surviving, with no cards yet asking if I am okay, or if I was still alive was that I need the fun THERE - so I have a hankering for some more exciting PJ’s. If I am to spend more and more time in bed (and Linda and the Alexandra Hospital see the degeneration accelerating/going quickly and a guy will be here this week to put in a sling for me, and they are putting new controls on INDY), I want some FUN PJ’s. I want (pause due to embarrassment) some PJ’s with ears! I am actually patterning this thinking after I saw a particularly femme uke who had PJ’s with bunny ears and thought, “That would be kinda cool.” (Oh, I am taking fashion tips from uke’s?) So, at least I have that to search for. Oh and here are the bunnies near the university and hospital which I am sure have NO influence on my desire for bunny or cat eared PJ’s.
The day before I got very ill I went down to...the DVD rental place (as you might have guessed by the review at the start) and saw this on the way. As you can tell, it is a hard and dreary trip down there. Ha. Not. Linda came with me due to my, um, falling over, passing out, and not coming home issues. Right outside the home we heard and then saw this bird pecking holes in the telephone pole above us. He has a grey body, blue feathers and a white head, did some hole pecking (this sounds dirty), found a bug, preened and continued. I am used to seeing the red headed woodpeckers out in East Sooke, and ahhhh, you do not want them waking you up every morning, I can assure you. Still, wildlife (do the bunnies count as wildlife?)
I have added a couple things to the wishlist, two are DVD’s as I have the little player now and so I can lie in bed with ice and a fan and watch DVD’s instead of lying in bed moaning (because it is like thinking about the finger you slammed the hammer on – oh that REALLY hurts, but if someone turns on, say, the USA v. Canada hockey game, the throbbing goes into the back of your mind while you scream that "oh my god, can't they see how open they are on the left!"– that is how it works). Except the more pain, the harder to understand so: BBC and foreign films (good days), USA TV that is really good (medium days to bad) or anime. The more pain, the more the need for an engrossing experience. I will try to explain it another time.
First, THE COFFIN has come down about half in price. It is a black coffin, with roses climbing up the sides, with a black winged woman atop.
I have had it in my basket for many many animals (um, pages of time on calendars? So months/weeks/years), but only now it dropped about half price so I put it on the wish list. BECAUSE it is not just a 8.5 inch coffin but ALSO a box that is over seven inches long and I can put cool things inside, like stuff I have been given or is precious to me. Do you have a box like that (maybe not a coffin, but you know what I mean)?
Also is the Anime Noein, which is voted the best anime by anime watchers in the UK. Here a top ten reviewer gave it 9.7 our of 10 – it is about our junior high selves and our future selves, set in a sort of time travel, future war environment. But through it all the question is, which people stay true to themselves and which decide to ‘go with the flow’ or ‘do what they are told’ or become something they hated, or hate themselves? An interesting question. I have never heard of it (which I admit interests me...how did I not hear of it, or did I and it is now in the 'dead' part of my brain?), but then I had never heard of Eden of the East (or East of Eden) and watched that and it was AMAZING – each episode (only 11) felt like 5 minutes instead of 24. So, can so many tens of thousands of anime watchers be wrong? I dunno, on the list it seems a New set is $19 and like new is $17 so I will save for that, or hope for good Amazon sales of the books I put on (amazon is good for selling if you have very, very, very limited energy - push sell button, enter amount, tada!). Or if it you know, mysteriously appears from someone, I could send it to you to watch too, after I watch it... (with a big thank you card)
The other is a famous director who burst onto the scene with the debut film he had made himself and his fiancée sang the music. It won all the awards. This is his third film, about six interwoven stories and titled 5 Centimeters a Second (the time it takes for a cherry blossom to fall) and went out of print almost immediately (sometime in my ‘black/dead zone’ – the time I can’t remember), so in the US, the only copies are $100+, but this is on Amazon from Australia, at $37 (still way too much for a single film!). My little player plays all regions. So if anyone in Australia sees a copy of this for a reasonable amount could you please let me know?
In manga wishlist, I am looking forward to, Fate/Stay Night, Cactus Girl (out now), Butterfly/Flowers 2 (out in a few days and is about a girl in love with a company man who was a servant of the high household, now bankrupt - she loves him, she kisses him, he says, "I understand....use me for practice for a suitable partner, my princess"), and Maid Sama 4 (oh, so, so FUN!) and a host of new manga that are launched pre Sakura-con (though if bought through amazon they are up to 35% off - far cheaper than getting it from a Sakura-con vendor). The next big launch for DVD’s and manga is "late May" and I don’t know when that is. Linda says it is not now, nor is it soon, nor is it ‘very soon’, or ‘soon soon’ or ‘later but soon’. So I have a feeling it is long, long long – but since to me, a week is just over 2 weeks long (because I can remember say 2 days, then 3 days then 2 days, that makes it 3 units, so 3 ‘weeks’ – but other people see that as 1 unit, 1 ‘week’ – this is the frustration of not really ‘getting’ time anymore).
But for now, as I worked through the night with Linda and Cheryl, until 10:00 am to do postcard for people (we got 73 done and stamped!), I am going for a LONG nap. And then, depending on my age (8 or teen or young adult), I will watch something with Linda, or if I am really young, she will read me a book. I am not ashamed because this is just what is. I am not ‘Elizabeth except when 8’, ALL of those are Elizabeth, just different in viewpoint (like the young teen Elizabeth, according to Linda coming out of the bathroom with her romance book and saying in this totally shocked voice, “This book has a man and a woman and they are have a RELATIONSHIP, and they are……(so shocked I can’t say it out loud so I whisper)…not even married!”). So when I wake up and am younger Beth, Linda sort of hides the yaoi, just in case I start asking too many questions.
So that is Bunnies, and PJ’s and a film recommendation and why, I hope, you will try to understand, as I narrate what occurs and why to me, and the pain that occurs because, I guess like the dentist, just because you don’t WANT to know about going, doesn’t mean you aren’t going to end up having to go (even if like me you brushed your teeth 4 times a day).
20 hours ago