With lots of systems to fail, my body seems often like an old clunker car: I spend more time in the shop (unconscious) than on the road. But, it is what I have and let’s go with that.
I am celebrating my birthday as and when I can, since right now, I follow the disease and it tells me when to sleep and wake and stuff like that, not the other way around. But I hope to get to a system of waking and sleeping that is stable. In short, I hope for a remission. It is kind of hard to tell if I am going 'downhill' when I have an emergency every other day. And while pain is never boring, constant random emergencies get 'tiresome' and then I end up playing the 'what if' game later (You know, 'what if I could have prevented that?', 'What if I hadn't gotten up a hour early to do postcards', etc).
Being ill: the past several years of my life are not what I would have chosen but are years, experiences and interactions which have given me gifts of understanding. I understand things that I was too dense to perceive other ways. Experience is a hard teacher, even when you WANT to learn. And against popular belief, there are still many for whom experience teaches little (this would be the time for personal introspection on actions and habits repeated when a) knowing the outcome and b) promising self it would not happen again).
Until lately, I never understood all the sacrifices that caregivers make, or those who help and support those who are chronically ill. Now I do. Seeing how hard it is, and how much of a full time wake till sleep job it is, but also learning how Chronic illness can be that way too. Sure, I visited more than most, or did ‘acts of kindness’ but I wasn’t THERE, I didn’t step up and commit the way Linda, Cheryl and others have for me. And while I had Chronic illnesses, since I hid them, and 'passed', I figured that most did the same and that is what Chronic illness was like. Learning the dozens of different impairments, chronic illnesses and how something like IBS can threaten work, social life, personal comfort, mental health and so much more taught me that while I can't walk/wheel in someone else's shoes, I can try and understand and appreciate what it is like to have to do that.
I'm supposed to say I've lived a life without regrets. Which always seemed to me to be an admission that I am too dumb to figure out that I always have more to learn. And becoming Impaired, Chronically and then Degeneratively ill has show me that when it comes to knowing that I don't know, there are grand canyons of personal ignorance I am now aware of. I do have regrets in my life, things I would do over. One of these is that I should have done more. I have tried to change that, as was possible, to be a person who was there and aware, as much as I could, over the last few years. But having a degenerating illness is very distracting to the best of intentions. And I think that is why I sacrificed so much physically for the sending postcards and gifts: because love needed to be tangible, as long as that was humanly possible. Hoping that someone out there thinks about you, and KNOWING because you have the evidence in your hand are very different things. Still, I was not and have not been there all the times I wanted to be. I apologize.
This reminds me, if you have sent a gift (for my birthday), please make sure to let me know who you are (you anon’s too!) and when your birthday comes around. Even if you have done it a previous year, can you try again and remind me, so I can try to get a fresh start on that. Because with a name and birthday, I can at the very least get to writing some thank you notes, and hopefully through scrape and slide, send out gifts till the autumn (I have a calendar already prepared for names and dates).
While my life is solitary, and my memory a bit like having every day put in the blender on 'frappe' (I might have bits of it, but often not the parts I want).
I still think, and watching good films helps that, good series too. I get some from the UK, from Amazon.co.uk, and one advantage of frontal lobe damage is everything isn't just surround sound, it is as if I live it, and I dream of it that night too. So getting good films (like The City of Life and Death, the Chinese film on the rape of Nanking I watched yesterday, then went and read for an hour or two on details I noticed) they help me open up mental pathways, and connect language centers, which slows dementia, and aids thinking. And I think we can all agree that the world needs more thinking in it, because that is part of what makes the world and all the points of view in it so very interesting. Did you know that a book read I can remember longer than a conversation, and a good mentally stimulating movie I remember longer than a bad and cliche' one (though those are good for the days I am 'half there').
So in this thinking, I've had two thoughts. 1) I think 'being there' changes a person, for the better, if they let it. While it isn't always pleasant, and often comes with grief and introspection, when you are THERE, as a friend, or relative, seeing someone daily, nightly, weekly, regularly who has a disease, chronic illness or terminal illness it makes you what we used to call, 'centered' or 'world wise'. To see and be with someone you care about during good times, bad times, and the very, very bad times, all those experiences rushing at you and having to reach past yourself to be there for them, to 'think like (fill in the name' in order to comfort them, it makes you deeper, more able to handle the little annoyances (or less, if you have been up all night getting pills and comfort and just holding a hand with someone).
People don't like change, and often fear it. But I think it will make you stronger, and more sure, because you realize how little you know, how panicked you became in this or that situation during care giving, and yet, you came out the other side. And like how a bad patch in a relationship you fight for takes away that fear that the connection might disappear, so this gives you the knowledge that you are stronger than you thought you might be.
Also, surviving those hard times as a person with a chronic illness or life shortening illness also lets you know how great it feels to have days where you don't worry about being too weak to breathe if you fall asleep. As for me, I've accept as normal life a level far below what I thought was humanly possible, or requiring so much assistance, I used to pity those like me now. Shame on me. Don't pity me, but get to know me first, then you can feel what you want, because you will actually 'see' me, and I you (not just some tragic story told for various reasons).
I'm looking forward for the paperwork and visits for the palliative program to be done. The program sounds just what Linda and I really need right now. It is here because of cancer. That is where the volunteers and staff learned about pain, and how disease looks different with each person, and so the needs are different too. I will owe the thousands of people before me. They were the ones who shaped the palliative program by using it and trained the staff by showing what did and didn't work.
2) We all have a past. People focus so much on the future, and I do too that I forget and assume that the present is all there is. But reading and watching and thinking, something I realize as a writer and a person during this disease process. We may not know our future but we all have a past. I met someone this week who did the 60 km challenge for cancer in Vancouver (because I don’t think Victoria has one). She had cancer, and because of that, she knew what her friend needed when her friend had cancer. Because of her past, she did the 60 km challenge. Her past gave her insight, and motivation and made her a better friend.
Cancer is a disease which make a person feel helpless. The lump they find, or the cyst, or whatever it is they test, just them saying it makes me feel helpless. The waiting to find out makes me feel helpless. Much less finding out your own body cells are changing, and destroying you, that is frustrating and helpless. Cancer gives bad choices, where the 'best' choice is to cut parts of you off, or to be willing take what we are warned our whole life to avoid. Those radiation signs, those toxic signs which are put up as a warning we now have as part of our schedule. They put on a tattoo so they can hit the body with radiation, enough to kill right down to the very cells. Or, they come out with special gloves, carrying a bag of liquid so toxic, they measure it out in drops: Chemo. People use the word like it is just a word, but the smell of it causes many to start vomiting, just in the body memory of what is to come, for many others, the night before is sleepless. You learn to cry and scream in the parking lot, to cry and tell them to do it anyway, becuase while you know these chemicals can kill you, and might, they also might kill those cancer cells first. But it weakens you, and changes you, leaving you fatigued (fatigue, I was told, was when a fire alarm goes off and you are too tired to move - I know that feeling) at best. It gives you tremors, and neuropathy, makes the bones soft, or eats through them, you get thin, and your hair falls out, and eyebrows, and arm hair and sometimes fingernails too, or they stop growing. It is like you are dead, but not dead. We do all this, because living is better than dying, but it sure leaves people feeling helpless, because in the end, the cancer may STILL not die, not enough, and you will die instead.
Lance Armstrong, is perhaps the greatest cyclist who ever lived, certainly the most determined.
He is the Winner of the Triple Crown twice, a ride in the Olympics and two arms full of trophies before winning the Tour de France seven times in a row, a record which will likely stand for decades. He is also a man with a past. In 1996 he was diagnosed with testicular cancer which had spread to his brain and lungs.
Lance had operations, chemo, and more operations including on his brain which removed necrosis (dead tissue) and cancer. In 1998 he went into remission and went back to cycling. Two years, 600+ days where there was no end to the tunnel of pain, chemo, operations, specialist, tests, treatments and side effects. But he came out the other side. And then he started to rebuild his body. He spent two years, with a cycle machine and breathing regulator to increase his maximum heart-rate, something considered medically impossible. And from 1999 up to and including 2005 he won the Tour de France, the most grueling and famous of cycle races. Everyone has a past.
In 1997 he founded Lance Armstrong Foundation for Cancer, and in 2006 he ran his first marathon, the NYC marathon, He wanted to run under 3 hours, the qualifying time to run the Boston Marathon. With a pace team, he was still above an average needed to make the three hours for the 26.2 miles when he was at mile marker 21. He said later that compared to the Tour de France, the marathon was “without a doubt the hardest physical thing I have ever done.” 
Using the television camera that were always watching him in order to motivate him through, to never slow, he pushed the last five miles and finished at 2:59:36. He made it, qualified for the Boston Marathon by 24 seconds and went on to run that too. Lance's finish in NYC raised $600,000 for LiveStrong, the Nike assisted yellow braclet campaign for fundraising for cancer.
On July 23-24 this year Laura Anderson is going to make the 60km walk for women’s cancer. Her page which outlines why she is doing it here. 60km is no small distance.
I remember hiking, every day for 8-12 hours, and how after a month, I was really, really happy. Why? Because though I had lost all my toenails, and 20-30 lbs of wieght, I had finally gone father than a car could drive in 12 hours. I think we forget how hard things are sometimes, until we try. 60km is a hard walk. Laura has a lot of training done and a lot of training ahead of her. And it will hurt. And the day after will hurt, and the day after that.
I think the distance, about a marathon and a half (remember, Lance went from his Tour De France training and then trained UP for his marathon – most people train months for a 10K) is supposed to be hard. It is supposed to hurt, because Cancer is big and disruptive and takes determination, dedication and loved ones to get through. The 60km reminds people of that, reminds us what our friends, our family, our loved ones went through during those months, or years with Cancer. Laura is working now to get ready to hurt so people are educated on Cancer, and money is raised for treatment, for early detection machines. I recommend helping her.
I used to run marathons, to run all the time, for several years, the entire time I was first seeing Linda it was running here, round and round the track, and running round my routes and home again. Eventually Linda ran too, and the 10K in Cardiff and the 5K for breast cancer. I know that there are people who want to push things are hard as it is possible, and the majority who do not. I think it is not typical to want to swim or run until you want to vomit, or just lay down, and do that every day. I applaud those who do the 60 km walk, because it is done out of love, a love that is willing to suffer.
I push myself because it is who I am, and when I was 8 or 9, I wanted to know how far a mile was in distance around our house, because my parents wouldn’t let me run around the barrio of LA. And so I would run around and around and around the house, hundreds of times, as a kid, so I could run two or three miles. That was just who I was.
I showed the clip below to my care-worker today, and told her, “I like when they show the parts which are real.” She liked it because of that too, but wondered why people did that. You push yourself hard because something drives you, compels to compete, even with your own expectations. And also because unless you are willing to feel like that, to risk hurting and losing, or hurting so bad, pushing so bad, just to try harder, then competitive sports isn’t for you. But also, none of us know what we are capable of, until we have to. Some illness' are like a race that can never be won, but always be run.
Pain isn’t failure, and losing isn't failure, and quiting isn't, because we can always get up, or decide today to start anew. Only if you don't ever try do you fail. Think about this, the guy who throws up, the threw up twice more that marathon....but he also won it.
Don't count me out of the race either.
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).
I have been in burn out for a long time (months); 
I recognize the signs because I have tried to support others who are or were burnt out. I made up five official stages so people could recognize how far they felt they were. But the truth is there are seven, it is just no one at seven lives very long. I am at stage seven.
During burn-out if you are daily abused from various sources, like I am, if you are in pain constantly, unending pain in every part of your body then after months of six, you enter stage seven. At seven, unlike leaving a situation, if you cannot, if you have tried to be ‘good’ and gotten even more abuse and pain then there is only insanity, death or both. I took a call earlier from my VIHA official nurse. She wanted to know the results from the hospital visit. When I told her I was terminal, she laughed and made a joke.
That is the sole nurse in charge of all of my care, my care plans, including if I get palliative care.
Today my Grandmother was interned. It hurt inside more than I anticipated. First because I did not remember what day it was: Linda came home in a suit and I asked her what client she had and she said she had come from the service. She had gone into able bodied mode, with no time for someone whose memory might only be a day or two at best, left without telling me, ‘stay up or be left behind’.
I had decided not to go, earlier, due to the hatred of that clan of four children; one of which had refused to be family recently (my father). But I still would have liked to know and was waiting to hear if the memorial was wheelchair accessible. Linda told me at the service another of the four children approached her, with tears, told her that she read my blog and loved me…..but that she couldn’t do ‘family’ now, and thus couldn’t see me, call me, contact me, email me (ah, yes, this ‘love’ I know about). Read my blog but couldn’t email me, as none of my family (all living here) have, or contacted me for the years since I came out.
I did not go because then the focus would not be on my grandmother, but on me, as one uncle said he would walk out of anything I attended. But she was MY grandmother too. My memories and my relationship with her too. She was a hard Matriarch, and had to be to feed four children from the 40’s onward, in the 50’s when her husband left her. One of the earliest stories my father told, or rather tried to fool me with at an early age of four or five was how he mowed the lawn for the promise of a new drink, “Adam’s Aid” and in the end, he was given a glass of water. There wasn’t a follow up of a treat, just that she had gotten him to do chores for water. Linda said that was Nanna all over. She was abrupt, and showed her love in unusual ways, like pretending that she had baked cookies for herself and was just giving some to you. 
She also would greet you with a note of chores in the mail box and a locked door, with the knowledge that once the chores were done, the door would open. They were things she was too short or weak to do, and she was too proud to have to ask around for help. She was tough and so her family is cold and tough and only had a memorial service because she had paid for it in advance.
But I wasn’t there. I saw my grandmother and talked to her shortly before she died; she was still full of a yearning for travel. Every time I see a National Geographic or a board game about obscure information, that is where you will be; reading every little card set up in a museum (it would take hours to do two rooms!). You were hard, and scared me a little as a child, but I love you. Goodbye.
I have spent the lasts few nights at home talking about not being able to take the pain anymore. I cannot cope with the levels of physical pain. And in level seven of burn out, if you only EVER get abusive and painful responses regardless if you are assertive, compliant, or say nothing at all, then eventually you believe that every single thing you do will only cause you more pain. And that was where I was, day after day of abusive phone calls. Nights of moans and sleep between hours of being awake praying for pain pills to work. We wonder now if that is the half digested stuff along with food that comes out in my feces….the pain pills. 
Today I found out that my walk-in clinic, my so called GP, had cancelled the waiting list spot I had for the pain clinic two weeks ago. I had been waiting, gritting my teeth through each day for nothing. The recommendation to the specialist had been cancelled and now, until I get a new GP, there is no way to get another recommendation. There is just the pain.
I was also told my entire medical records were there, boxed and I was supposed to pick them up by day’s end. That while it was now a walk-in clinic that did specialist referrals, tests, MRI referrals and other things for every other person: for me, the only treatment I was allowed was pill renewals. That is it. Official sub-human. And this was decided when I wasn’t even there
– maybe when my ER results had gone there? Gosh, even more complicated….dump her.
So when Linda came home, her AB speed and very abusive. She spend another day taking pains to correct me, to read my personal email over my shoulder and correcting my mistakes. So much did her mother verbally abuse her that perhaps she can’t stand the feeling of NOT being right anymore, so she shows me, since then, every little time I am wrong (and thus makes me feel that hated feeling she is trying to escape). She had been sent pictures of my grandmothers funeral already by my parents. I had not. It was a slap on the face, so I gave myself one. She corrected me, told me I did it wrong, so I gave another. It turned into a flurry of verbal and physical abuse, her holding and restraining me while shouting that she would do my worst fear because she felt out of control and needed to control….she MUST control, things must be in CONTROL!!!
And for me, after she scratched me, without remorse; I knew that even to share as I did the night before the ways during the day I had been dreaming, fantasizing of dying to which she told me to be quiet and count so she could sleep, that she did not WANT to hear me. She did not see me as a partner, as an equal. So I wanted to show her how that felt. How I felt when even the partner I thought I had used the information of burn-out to abuse me. It isn’t easy to make both arms bleed freely when you don’t have much more than an 1/8 th of an inch of nails or less but if you are insane and in a frenzy and don’t mind losing a nail, you can do it. 
I can. I did.
Then I started screaming, because the emotional pain inside was so much.
I am better now. She is better.
I asked her if she wanted to be with me now. 'Yes,' she said, 'I want to go to Hawaii with you and ....'
I cut her off. “No, now. Do you want the me of now? Are you proud of the me of now?”
She was confused.
I took her hand. “Linda Joy, do you take me as your wife?”
Finally, for the first time, she cried. She got down on one knee. “Elizabeth Katherine, do you take me as YOUR wife.”
“I do,” I said, “In sickness and in health.”
“Yes!” she said and buried her head in my lap. I stroked her hair..
“For better or for worse.” I said and she nodded yes and I held her, and slowly stoked her. If we had the now, if we were a couple, not just a caregiver/carer then we could sort the rest out. Maybe heal the wounds we gouged in each other, and ourselves.
The pain in the body goes on, and it will go on, until I can get a doctor to help me, or buy drugs on the street corner. The doctor who would work to find a solution was at the walk-in clinic, so that seems no more options. Cheryl is coming tomorrow and says she has some Manga, which right now is all I have for pain control.
That and art books from Akadot. I like to look at the pictures. I like the warm feeling Manga brings.
I have been in pain for so long I can’t remember what it is like without it. Linda is going on respite for a week. I think she is burnt out as a carer. Or needs to recover from HER mother’s mind fuck in the prairies. I want to know when I get a respite, when I will stop thinking of pouring boiling water over me just to see what happens, if anything. Or throwing myself out of the fourth floor window to see if I get treatment for that, or if they tell me to see a GP. Or if I die. Cut it, smash it, break it: limbs, fingers, my body...what difference will it make. 
I want to live, but I am so tired of the pain. One person today, from VIHA, as I made a complaint against the RN who laughed at my being terminal, she said, “It sounds like you need someone who actually cares about your care.”
Yeah. Plus the head of the US specialist clinic said I needed better pain control then, and soon. That was five months ago.
Hey, I went out for a pain killer renewal because I need it and because I woke up after three hours sleep in so much pain, I don't know how much or if I did sleep the rest of the day. OW. Then I peed for nine straight minutes. It is what we call a 'trauma pee' as the body dumps protiens and liquids after a trauma, the question was, 'what had happened?'
Still don't know except that I feel like I got hit by one of those old steam rollers, slowly embedded in the sidewalk.....and that is when I feel good!
I did just a post on the Postcard Project Blog, and I would love if you would go over and read it (and you know comment a little?)
Okay, the problem is that when trying to keep a birthday present a secret and moving lots of money around and meeting people and then being sick and having your partner read out all your emails except you have been emailing an artist for two weeks, then it sort of isn't THAT much of a secret anymore.
If you are going, "Huh?" - remember Jason Hunt, whose father made a totem pole for Buckingham Palace, and whose uncle made the Queen's Baton. Well, his average work is about $17,000. And he made a panel that Linda liked and it was still unsold unlike everything ELSE so I asked Cheryl to sneak back and ask how much it was and it was ONLY $6,000. Ouch. No, can't afford that Linda, even if you like it.
But I started email back and forth to Jason Hunt and in doing so I started to understand that this guy was the REAL DEAL. For example, when I asked what the Killer Whale meant, he said that what they say in gift shops is untrue, you can't just put one word on it. After we made an agreement for a commission, I asked him if he was going to add in some other things in the carving to represent us and he said, "No, I'm making the killer whale" - which was odd but true to art particularly when I got the REST of the story (keep reading).
In his nation, the Kwagiulth, when someone comes and a Potlatch is put on, the Killer Whale dance is done first with two dancers to represent the Killer Whales welcoming the canoes in. Since the Haida up north had an agreement with the Kwagiulth that they could go past the nation's territory to hunt for slaves, it meant the Kwagiulth were the second most feared nation. They used to be called the 'people who chop off your head', and supposedly one chief played soccer with another nation's chief head (these are the kind of stories that whether true or not make your people feared). So they were the bad boys of the Island.
It turns out you can't dance the Killer Whale dance unless your family has the RIGHT to that symbol. Jason and his brother danced the Killer Whale dance, as it requires two dancers, from a young age until the early 20's, and that is one reason why it shows up in his work. But if he was from a different family, a smaller, less important family and didn't have the Killer Whale as a family symbol: he COULDN'T draw the killer whale for us....because his father wouldn't let him (more on that!)
After many email Jason remembered that many years ago, he had made another panel, a smaller one for a couple's anniversary and it was only $1,600. Well it is Linda's Birthday and we had our 15th anniversary, so I said, 'Are you willing to do something like that?' As it was smaller (3 feet or 3.5 feet I think tall) but not tiny. He said after talking to me he could do it for under $1,000. The one he did for the couple is here, as he sent it to me in email. 
As you can see the carving is quite deep and extensive which indicates the quality of the artist (only really long term artists carve deep as it takes a lot longer and you have to be RIGHT). But this is the one Linda was saying, "I like that" so who I am to argue?
Personally, I think it is a piece that will grow on me the more I look at it, I like the left side but still warming up to the right side at present. But I like Linda and I like things that make her happy. This carving is not 'westernized' in any way, so you have to sort of become like another culture to understand. I went down and talked to Jason (and gave the deposit which I scraped up) about the carving and what the whale meant and the carving meant. e said that the red cedar will be brought down from Port Hardy (where his Nation is), for him to carve and will be done in about a month or so.
He explained that he is carving a representation of HIS right to have a killer whale. Because carving is hundreds of years old and traditional. His father, who worked under his grandfather, and his grandfather, will make sure he does it right, because it is part of the family name. So he is not giving us a 'version' of the killer whale but the carving tradition of several hundred years of his family and the Kwagiulth historical Killer Whale representation. This doesn't give US the right to carve it, as we have not been given that to our family name. For example, there are about 14-15 carvers but if the Long House needed a new mask, they would go to his father, because his father is THE CARVER, and his family has been that for many, many generations (which is why his father and his grandfather were asked to make the Totem pole to represent the Nation for the Royal Family). And when his father passes on, it will go to him. So it turns out, we are getting a 'Jason Hunt' while he is still in the four figure bracket (or in this case um, HIGH three figure). While I don't think his father takes commissions except from governments or maybe the Olympic committee.
So...that is Linda's present. And yes, it was kind of crazy to say yes on the email when I did not have that money at the time, nor knew anything about him. But I had researched for a few days and his work was just FAR better than others. But still, crazy.
I need to sell stuff like my bike and save my allowences. But just because I have to sit really still in order to live now doesn't mean I still can't do crazy things still right? And to me, when Linda said, "I like it.", that was it. After she found out, sorta, I showed her the picture of the carving and she liked that carving too. Linda doesn't say, "I like that" out loud very often.
If you want to assist in buying Linda a birthday/anniversary present (which is also going to be sort of an 'our life' memorial present too), Cheryl is taking care of the funds because of my memory problem. I have Cheryl's address for paypal and it is Rangergrrlkio@juno.com - so please send any donations for Linda's present there. If you do, then you too can be part of a 'Jason Hunt' and I will try to thank you for making the kindest caregiver I know, excited and happy.
I talked to Jason and he will send me pictures as the carving is going along so I can do more blogs, and as we talked for 40 minutes, I will tell you in other blogs more about what the Killer Whale means to him personally as well as his people.
I still find it amazing that here is this carver who has spent years working on his craft, and because he represents his nation, his father, the Master Carver, and representative of the Kwagiulth will come down and make Jason do OUR PANEL 'right'! And we met him at a FARMERS MARKET!
He says that his father says, "When you think the carving is done, then it is time to do it again, to go over every little piece that you don't feel is perfect, to make sure everything is absolutely perfect." It is kind of like mountain climbing; how when you reach the peak, you are only HALF done, because you still have to get safely down and back.
So you will see more of this 'surprise' over the next month as it gets developed, once the wood arrives. I am sort of excited and sort of "Oh SHIT! That's a LOT of money and what have I gotten myself in for!" But I think the excited and, "Hey, get busy putting more on ebay (I made about $100 last week)" and grateful knowing he isn't going to be emailing me on thursday going, "I'm done, do you have the rest of the money to deliver?" (NO! But by the time he finishes....yes!).
That is the news and that is my plan to do something wild and crazy while staying still. I have to go lie down now. I've been working on this blog for over seven hours now. So....um, not doing so great.
Have a great weekend and Happy Birthday to Linda (and anyone else who has a Birthday today).
He is the Winner of the Triple Crown twice, a ride in the Olympics and two arms full of trophies before winning the Tour de France seven times in a row, a record which will likely stand for decades. He is also a man with a past. In 1996 he was diagnosed with testicular cancer which had spread to his brain and lungs.
Using the television camera that were always watching him in order to motivate him through, to never slow, he pushed the last five miles and finished at 2:59:36. He made it, qualified for the Boston Marathon by 24 seconds and went on to run that too. Lance's finish in NYC raised $600,000 for LiveStrong, the Nike assisted yellow braclet campaign for fundraising for cancer.
I remember hiking, every day for 8-12 hours, and how after a month, I was really, really happy. Why? Because though I had lost all my toenails, and 20-30 lbs of wieght, I had finally gone father than a car could drive in 12 hours. I think we forget how hard things are sometimes, until we try. 60km is a hard walk. Laura has a lot of training done and a lot of training ahead of her. And it will hurt. And the day after will hurt, and the day after that. 
