Friday, February 24, 2012

And then I cried.

A day of having VIHA tell me that no, it must be person Q, while person Q tells me it is Person T at VIHA, who says, “No that is definitely Q.”

“I just talked to them”

“Well then it must be F.”

“Actually,” I say, “they were the ones who transferred my call to you.”

“Really!!? Oh, well um, call back Monday.”

And then one organization kept shuffling me by phone back and forth from Victoria to Vancouver. Victoria person asks manager, then sends me to Vancouver, tell story again, told to wait and finally get manager in Vancouver, who asks me if I have the number for the Victoria office. They transfer me, I get another person who then gives me to another manager, who says, ‘Where do you get this information?”

“Your web page.”

I was on the phone or talking, trying to find ANYONE who would put something in writing (none so far), having people yell at me, hang up on me, tell me this wasn’t for me, that they didn’t know or care but not my inch.

Because there was a secret meeting, with people who won’t say they were there, even when I talk to them, and won’t put it in writing. They want me to see a psychologist. They want me to be labeled. Because that will improve my quality of life? It gives them a lens though which to distance themselves from me, and to justify actions. But actions not honest or noble enough to be done openly, or with us present, in case the reality shake the foundations of a self convinced fantasy.

I have moved from having a disease which is all in my mind, to having a extremely painful, debilitating and terrifying disease which can be ignored if I am the mental disease. Somehow having a mental disease trumps whatever physical might be killing me. And here I thought they had given up on controlling me.

After so many hours, always calm, always explaining, always persistent, the last person of the day asked how it was, being me.

“Sometimes I am in too much pain to fully appreciate all that people do for me.” I said.

“That sounds hard, for your caregiver, for you. It must be very hard.”

It was the only person who let themselves risk caring, to speak of the personal, intimate.

“It is,” I said, trying not to let my voice break, “Thank you for your time.”

Wednesday, February 22, 2012

Finding a NEW schedule

I apologize for being absent so often.

I am going to talk about something people with chronic and degenerative diseases have to deal with, and think about WAY too much: taking a shit.

I haven't talked enough about it, but for me, and I think for those with chronic or degenerative neuro-muscular illnesses, the changes and energy needed to avoid impaction makes me think I could have learned to play the violin....if only I hadn't needed to ensure all was good 'in the pipes' as it were.

My ability to be up each day depends on a schedule and I have chased a schedule for over six months now. The three main factors are a) sleep, b) time awake at one time and/or energy spent and c) intestines and bowels. I thought, thanks to a week where everything went well that I had FINALLY solved the problem which kept me up and expending too much energy, a regular and quick dump. A combination of a) prunes, b) lactalose, c) soft fibre, d) flax and e) 2+ liters of water per six hours is what I use. I have cut down on my pain killers because all of the morphine ones cause constipation. That combined with a loss of nerve and muscle function means that to get from the stomach (point A) to the toilet (point B) meant I needed help. Not the right balance, and I get constipated, and end up spending hours on the toilet for no outcome, then lose a day having to sleep 18 hours in order to build back that energy.

Much like having a shower which suddenly turns hot or freezing cold because your neighbor decides to water the plants, it is hard to tell what is the exact problem. But when things in the intestines suddenly stop or go, it quickly changes the comfort, energy and focus of my life.

But a few weeks ago, I told myself I had solved it forever. "Great. Now I can get up, I can go out to eat, I can be up when Linda is awake, and work on getting back to writing and wheeling outside."

Then something turned the tap a wee too much. Suddenly I was on the toilet, with cramps, for two hours, then two days later for four hours. And all I seemed to do in between was sleep. Yes, I was not constipated; but I wasn’t up or full of energy, instead I had IBS or like having a bad giro/burrito food poisoning two to three times a week. And worse, something in my five things I do was creating it. That is how I went from Monday midnight to this morning.

'Whew, this HAS to stop' I told myself. It messes with me, and with Linda.

So a NEW plan. I keep losing time, not just days, but weeks, and months in order to a) make sure my diaphragm is strong enough, b) make sure my heart is beating correct again, c) have a regular schedule so I can plan when to go out, when to see movies or picnics.

The thing I need most is ENERGY. I have no reserves, because I use them up on the toilet, then sleep until I am at a minimum. It is a good way to end up with an infection or go into a organ failure, but not a good way for Beth, who wants to keep fighting in order to live a full life. Linda is working hard doing applications, doing the ‘work assigned’ they give you for the long list, and the two days working on the stuff you have to turn in before the short list. She is working hard but getting those short list interviews and one day we will have things like ‘insurance’ and ‘sick days’ and ‘vacation time’ again, and we too will have joined the recovery, and can start doing adventures together again. But only if I can keep myself going until then AND can improve my health, myself. VIHA, who should be helping Linda when I can’t help her or myself, had a meeting but won’t tell us the outcome, but the VIHA nurses, and the night nurses who come out to assist – they won’t come for us, but they won’t tell us why either. That is something I need to address, but first get better.

So, I decided I need to stop going by the 6 hours up, 2 hour nap, six hours up plan from 2008/2009. I have changed in the last couple years, and I can’t put out the energy I used to. I need to note and mark how much energy and time I can stay awake and then change to that – listen to my body. If that means 7 hours up, three hour nap and 5 hours up, or 5/3/5 or 8/4/4 or whatever it will be, that will be a schedule based on what I CAN do. Then I can do my daily routine of writing while I am strong, going out when I am strong then resting. And I can begin to build reserves so that when I need to, I CAN get up after a 6 hours of sleep in order to go to do a test at the hospital. Because for the last several months, I haven’t been able to do that.

I want to increase my patches to a level where they are changed every three days, not every 2. With me sleeping, it makes it too difficult for everyone if they have to be changed every two days. And if I am not in pain ALL the time, and using only 1 pain medication (the patches) and TWO breakthrough pills (one for small pains, and one for the BAD days). If I ONLY take pain meds when I need a 'breakthrough' then I won't be taking them every day, and won't, when I sleep a day or two, start going through withdrawl (not fun). So off to see the doctor and to set this up. Then I think things will get better.

I’ll let you know how it goes.

Saturday, February 18, 2012

The 'Working Man' Norse Hero? Garrow's Law and a documentary asking 'What is a good neighbor?'

When Linda showed me the cover of ‘Troll Hunter’, all I could think was ‘Oh great, another horror film with leprechaun’s or dolls or something else crap.’ When she told me it had a 7.1 rating out of 10 on IMDB, I took it but with raised brow.

I didn’t know when I watched that this film had no plans to be seen beyond Norway. Andre Ovredal (writer/director) “I made the film for a Norwegian audience, but I hoped and thought that it should perform outside the country as well. We were talking about them maybe putting it out in Germany because we knew they liked trolls down there.”

I didn’t know that because of this film, Variety listed him as ‘top Directors of 2011’. I just watched. Okay, a sort of documentary, decided to watch for another ten or fifteen minutes. It seemed to be a film about bear poaching. But, as I know it is about Troll Hunter, I’ll hang around.

Needless to say, I did. From the hypocrisy of ‘animal conservation’ policies which include giving hunting permits to the unthinking obedience of national workers putting in time, this film mocks several things, using what to a Norse audience would be the common ideas of trolls. Taken out of the garden pots and figurines, there is a biological system and fueled by the ‘Is this guy insane, who cares it is great film!’ enthusiasm of the local college youth doing the documentary, it advances with the poor field worker as hero.

Ovredal wanted to show the hero of the guy to whom this is just another day at work. And there is one moment where he is filling out his ‘post-troll’ incident report with a chewed on pen in a folder that is so bent and worn that yes, of course something life-threatening has happened, but now we have to go and fill out the constant paperwork. Our ‘Troll Hunter’ contents with the official government bureaucrat who, like all, never ‘get’ how field work is different than their maps and pin points, along with mess ups like how his support workers are now low bid EU workers. It is his both blasé attitude at being trapped in a cave with sleeping and farting Troll Kings (he naps), to the mild excitement of having someone to finally talk to in his 1970’s caravan and his EXTREMELY beat up four wheeler. That mixed with his ‘oh, I hate this part’ as he is in some sort of home made armor in order to extract blood from a 40 foot tall angry Troll, to ‘Watch out, you don’t want to hit the red button.’ Or his ‘yes, that’s a land mine, but it’s not active now’ (one of the students is sitting on it), makes it a mixture of droll humor to the kind of filming Mutual of Omaha would do by having his black guide see if he could go and get something from the crocodile/tiger/lion/etc.

The director got an invite to Austin, then showed it at Sundance, won and like night follows day, there is already an American Remake being done. “I hope they keep the Trolls” Ovredal laments. Though it only had $3 million budget, film must NOT be that expensive as they shot over 50 hours, and the first ‘finished’ film was completely different, but he changed the scenes, the shots, the narrative and we have the film Troll Hunter. He wanted people to know he didn’t watch Blair Witch until AFTER he finished the film, “If you run through a forest with a camera, people are going to think of The Blair Witch Project, no matter what you do, but that’s fine.” Unknown until I looked up, the main lead, the ‘Hunter’ is actually a very famous Norwegian Comedian, but he looks like a tired Bruce Willis to those not ‘in the know’.

In film that are coming up which I may want to attend, I can’t tell if I like ‘Lincoln: Vampire Hunter’ trailer (click Here) or just that Tim Burton has reemerged, and with the director of the hit Russian vampire war films Daywatch and Nightwatch to direct this film. Also, with an idea I wish I had written is Seeking a Friend for the End of the World (trailer HERE), about what if the USA DOESN’T save us from the giant meteor? Also Ridley Scott has returned to science fiction (huzzah!) and here is the UK promo for his new film Prometheus (click on x on the ad to get rid of ad).


Before I finish by reviewing the Award winning Documentary Budrus, I wanted to let those who are friends and fans of Garrow’s Law know that Series 3 is out, and you can simply order it from Amazon.co.uk (or get mine when I sell it tomorrow on ebay!). The budget for clothes and sets continues to increase, as well as a delightful view of Garrow toiling away on 10 or more cases a day (all taken from actual cases). The series ends with Garrow meeting Mr. Fox, the famous parliament opposition member, and some resolution on his relationship with Lady Sarah. For those who have researched Garrow (as I did after watching the first episode, but then, I research EVERYTHING I watch, read or do) you know that he did, in real life marry her, and went to parliament himself. With extreme sadness I found, from the researcher and part writer of the series, that Garrow’s law is cancelled. The site is well worth visiting as he recounts the research he did, like finding tracts and the background story in order to flesh out the defendants, as well as real transcribed arguments Garrow would have with the Judge and other interactions.

I am saddened that while BBC is putting on 20 more series this year, Garrow will not be one of them. The DVD’s allow me the only chance to see Garrow’s law and improve my language skills, as well as my ethical outlook. But the knowledge that even had it continued, my being alive to see it would not be likely. I can only count my life in weeks now, whether ten or three, and when it all depends on the percentage of efficency of the heart, I think I may have run out of magic tricks. But Garrow’s Law series 3 is definitely a top watch.

Budus is the name of the Documentary. Budrus is a village of 1500, one of six villages which the border security in Israel acknowledge will lose out as they are completely enclosed, with Budrus alone losing 3,000 olive trees, 300 acres of farm land, and where the wall will go right through the cemetery. Ayed is a civil servant in Palistine, the West Bank, one who has been arrested five times, the first for being a starting member of Fatah, the group wanting a Palestinian nation. They used to clean the cemetery, clean the streets, and help at the harvest, not just out of ‘good will’ Ayed recalls, but to bring up the idea of a Nation of Palestinians.

But we see first from Doron Spielman, Army Captain and spokesperson for Isreali Fence Building. He says the Fence is a solution for security of Isreali civilians and a high quality of life for Palestinians. “The solution to the loss of civilian lives, that trumps everything.”

Ayed’s house looks over the olive groves but also on the lights of the cities of Israel; he lives in a village where his own 15 year old daughter, studying to be a doctor, has never met a Jew or Israeli who is not a Border Guard or Prison Guard. But Ayed agrees, : It is a natural right of all countries to protect the lives of it’s citizens, and I believe Isreal has that right.” He continues, ““However, Israel is trying to build the fence on its neighbor’s land instead of it’s own borders.”

Captain Doron Speilman makes the Fence policy clear, “The Fence in places does go onto Palestinian property, Budrus is one such place. This is a thing that is extremely unfortunate to the lives of the Palestinian people. However, it is LESS unfortunate than the death of a single Israeli Civilian."

A problem when there are two groups and for most in both groups they believe that the other wants to do ill to them. This is where a documentary can show both sides and help, maybe in retrospect, as a mirror to actions taken. Is the official military policy of Israel so blunt that tens of thousands of acres, thousands of people are worth less than ONE Israeli civilian?

Ayed, who is friends with the local Hamas leader organized a local peaceful protest which included all three groups, Fatah; Hamas; and Palestine Front. For the first day or two it seemed to work, but then more Border Police were sent.

Yasmine Levy narrates what occurred during her time there. She joined the Border Police because they were more aggressive, doing active combat duty regularly. And with the increased guards, the contractors soon started ripping out the olive trees. Though as one 80 year old female grower in Budrus said, “’Olive Oil is the foundation of the House” I’ve heard this saying since I was a child””

Meanwhile, Ayed’s daughter had noticed that there were no women and asked if the women and girls could come. He said yes, and after that, there wasn’t a day without the females.

To Yasmine, having females was in a military view, is just a way to stop them from shooting, and leaving the Border Police exposed. So they attacked. But as the daughter said, if the men or boys push the soldiers, they get shot or stopped, but she thought the women could do it.

So be it beatings or trying to be run over by military vehicles, the girls and women just pushed back.

So the Border Police started directing tear gas at the women, even if they weren’t nearby, to force them back. You can see the smoke of the canister which has just dropped, the spiral going down into the crowd of women. But only Palestinian women.



Ayed had the prime minister of Palestine visit but he only wanted to meet ‘important men’ not the villagers. So he went to Israeli’s who were against the wall and invited them to join. And they came! This was the first time both Israeli's and Palestinians protested together. The Israeli's kept showing up day after day. This was a problem to the Border Police. As Yasmine said, they can't shoot at Jews. If you are building a fence to protect Israeli citizens then shooting protesting Israeli citizen’s defeats that. The Israeli’s kept asking, if the Border Police said it was a ‘Military Zone’ that they put it in writing, as the law required. The Police refused.

But how to get rid of the Israeli's and keep building the Fence?

Things ended up getting very heated, until on TV, the Minister for Defence said that ANY Israeli protesting in Budrus should be tried as a traitor. And so the Border Police did just that. Ka-BOOM! It is quite different when YOUR rights are suddenly gone and your children, your friends are unable to have freedom to speak, to travel, to protest. Suddenly more want to protest!

Now there were more Israeli’s looking at the situation but delegations from all over the world were joining the peaceful protest (and getting tear gassed, and beaten for showing up). Yasmine said, “We were told to clear them, and so we acted like robots.”

Suddenly the Border police in Budrus were not fighting about olive trees, but against Israeli’s and the right to have a protest. This is how the British were pushed out, and how passive resistance works.

In comes Captain Speilman, “Ultimately speaking, a non-violent protest is NOT going to stop the way of the Fence. Not going to happen; because Israeli men, women and children need to go to sleep at night.”
This, by the way, is NOT he way to speak when on camera. The Border Police became extremely aggressive, and shown using live ammunition, with firefights going on to push back protestors with no weapons. taking over the village of Budrus, setting up barricades at each end. They they started then sending troops into houses individually, occupying and harassing the occupants, shouting at them at ‘Why don’t you show Israeli’s more respect!”

This is about the Fence? About Olive Trees? The delegation from South Africa didn’t think so. And the question of ‘Is this the way a ‘good neighbor’ acts?’ was what bothered people. After the Israeli military took over the village, the protests continued, for months. If you want to find out whether passive resistance can win against the Israeli army, you’ll need to rent or borrow this DVD from your library.

Ayed’s daughter now has Israeli friends.

Thursday, February 16, 2012

Tyburn Jig

I had to stabilize my heart. That might have lost me a couple days. But now, it doesn’t matter if it is Monday or Thursday. All that matters is that I made it: I’m here and awake. I can’t keep up with time, just what is needed to survive.

For me, being awake is the greatest success. It means I have overcome and balanced what no longer seems able to be balanced. Yet, here I am! I wish others understood that.

I used to worry, but you'll be okay. Survival is part art and part naked brutality: the belief that you will return, and the will to do what is needed to give the best chance of that to happen.

I am at peace sometimes, but I keep getting vomited up.

Monday, February 13, 2012

The Answer to Why?

‘Of Men and God’, a film of the trappists monks in Algeria when the civil war peaked, is about the ways in which we learn to accept things, including acknowledging the fear of the peril from that which we cannot control. Perhaps it is not happiness one has, in times of extreme duress, from forces uncontrolled, and individuals whose choices have led them to dark places. But it is possible to know where and why you are.

I did so much because I wanted to be of service and to be an free woman. And that cannot be taken away, no matter how pie in the sky idealistic that sounds. Yes, someone can put a gun to a person’s head and tell them to say this or say that. And perhaps they will, in order to resist the devaluing of life until the end. But also they can say ‘No’ or nothing at all. There is always a choice.

I am free, and while at times, it may seem emotionally that abusive individuals in Wales, and abusive coaches in Victoria, and the abuse of apathy in doctors and the progressive and helpless nature of this disease are somrhow connected, they are not. And no one can stop me from loving; even learning to love those so damaged or dulled by life that the light of empathy may have dimmed and almost gone out. And maybe they will take the risk to care again then.

I might not be lucky in some ways, but I am free and I know of love and how to love. And I am lucky in the friends I do have, and who have found me.

So ignoring the idea of waiting for ‘good days’, and focusing on the ‘good hours’, I spent five or six hours stamping and sending postcards. Another 35-45 to bring it somewhere between 6,300 and 6,400 in total for the postcard project. Ha ha. It was a good day.

Friday, February 10, 2012

The Question of Why?

The question I’m not supposed to ask is ‘why?’

When the RN from VIHA came Dec 22nd, she didn’t put on the patches, in fact she put two of them on backwards and was working to fix it when she decided that ‘You’re just not worth it.’ It was past her ‘clocking out’ time and so she walked off, with cover stickers and Fentenyl open on my back, top off. She left trash and covers, including some with Fentenyl gel (which is lethal to children) not just in the apartment hallway but in the hallway of the building. She just didn’t care. Linda was notified when she returned that the RN felt ‘threatened’ though she said there was no verbal or physical threat to her, nor was she touched. But VIHA pulled ALL care pending a meeting I may or may not ‘be allowed’ to attend, and when everyone was ‘back from vacation’.

I wasn’t on Xmas vacation. When my case worker returned, she did understand the fuss. The meeting was to occur in January. It is mid was through February and there is no care, no number to call, no back up. There are complaints on the RN who is complaining….but nothing occurs.

Probably that is why I lost two days this week.

If it was painless, if it didn’t make me grip the armrests so hard I worry they will break off, or every day find me tilted forward, curling in, and without the muscles needed to sit up, to lay my head on the headrest. If it WAS painless, I could exist like this. Maybe it would be enough.

Tonight I have to decide to either do nothing, and finally get rest, spend some time with Linda or Cheryl. Or I have to decide to do something so painful that I live out scenerios in order to get through it. I have to climb a cliff or die, I have to get up the hill to where hostages are held. Whatever it takes that day, and then I just try not to kill myself the following days. There is no plan to deal with the pain after, just that what I need to go another two weeks is done and if I go insane for a day or two from pain in order to do it, then so be it right. It is like going to a torturer, or a dentist who is going to drill your wisdom teeth. And every week you have to choose to go there, to experience it. And even if the pain doesn’t show physically, it scars you, more so because it is a choice.

But why? Why is it ALWAYS that choice? Why do I see people in the hundreds who get to choose the easy way, the way of escape, the path of avoidance? Why do cowards prosper and when God when will you keep your promises to me?

I used to have a family, friends, kindred spirits, associates.

None of the workers, the health people, the doctors know how to deal with the disease. The same frustrations I have they experience but instead of making choices, or helping, they choose to avoid, to dump it on someone else, or just opt out.

Why is it always the HARDER choice? In all things, from University of Victoria trying to fail my practicum because I kept the Passover, to having my mother throw me out as a teen because I would not stop in my saving money to move out. I watched my parents turn on and off being parents for my entire life, depending on how they felt, if they had a headache, or how perfectly I could guess their expectatations.

Murray and Pat McClung choose to move away, to have no functional contact, no phone number, and no initiated contact in over three years. Why? I don’t know, but I do know it was easier for them. I know that I never stopped trying to help them because I love them. And I know that my family mocks me because they tell me that loving is a weakness.

My brother, Peter R. McClung, that's Peter Richard McClung of Blue Bell, PA, who works at Aetna and I have had a rocky road. First it was coming out, which was hard for him and with our Evangelical Church. Some comments he made ended up with Linda being attacked verbally by a 'gathering' and left sobbing in a parking lot. Then with the experiences when I was younger brought up, in an attempt to resolve and move on, his response eventually moved into a sort 'chit chat' relationship with the Elephant unspoken in the room, but not wanting to see me. And as I grew more ill, he made it clear that we would not meet, and I could expect no assistance from him. He did, randomly, and once or twice, assist, but with the assurance that this would not happen again. As I was out of medication, we had no food, there wasn't enough for rent, our electricity had been cut off, we simply were grateful for his philanthropy. However, his sharing of how taking care of a family at the church he served as Assoc. or Assistant Pastor to made Linda and I feel that perhaps we simply weren't a good advertising return on investment (you know: good advertising is better than blood). And we are perhaps both messed up in a household where dominance and pecking order was the most important. Did he use his strength to do what he wanted to me, what pleased and satisfied him at times, even when I asked and begged no? Yes. Until I convinced him that tonight, and proved I would call for our Father. A Father who oft used his hands for ‘serious’ things, like not smiling with enough sincerity, or eating before being allowed to.

It has, I think bonded them. My father said that my saying my brother used my body to have sex (or as the therapist said, used violence to have control) makes Murray, my father look badly. It says he didn’t have complete control of his family. So he goes on vacations and cruises with my brother. Why? Because it is the HARDER path?

Do I lie there when paralyzed and think about them, or the best friends who won’t even kiss someone not in the cult, now some sort of apocalyptic evangelism. Or the friends who died, or those who just won’t get it or allow me to be ill. Linda, where do you go in your head? I want to know about you but you only tell me about Val or this or that person. I am still in love with YOU, not them, want to be with YOU. But you don’t even remember Monday as the day I went without any pain medication, and was de-toxing, but as the day that I didn’t go out taking photos with you. I wanted to, really badly. But I was shaking, and so close to vomiting, that I was barely keeping all the pieces of me from flying off. I was SICK. I don’t fail you because for 15 years I could go without sleep or food and do what ever you wanted me to do when-ever that was. I still want that but I am SICK. I can’t control my limbs, I can’t control my heart, my lungs, my kidneys, my liver.

They say that if you are content where you are, then you are happy.

I may have always pushed myself harder, may have never had peace. But I think I could now.

I’ve been sitting here, in INDY, or lying in the hospital bed waiting for you. You said that when I got too sick you would read to me the way I used to read a book to you when you were down. I could be happy, I could have peace, but after a year of never speaking to me, I don’t know you, I don’t understand your moods, your anger which I see every day, which is directed at me every day. How am I failing you to that level of anger?

And through it all, week after week, month after month, I have to choose the hard way, which I do alone, sometimes there is someone there but often no. I push to go, I push to exercise, to deal with intestines, with my heart, my lungs, with my pain. I clean up and deal with the shakes and the hallucinations, with the deep dark depression due to my anti-depressants stopping, but I keep on. I’ve waited for you Linda, and for changing patches every 2 days, every 48 hours, I have had 3 patches in 9 days. I’m so tired that I have to remember how many hours til the patches are changed, how many days since taking a dump, how many hours since eating, how many hours since this pill, since that pill and I don’t know what day it is. And it is all on the white board going into the study but no one reads it.

So I am alone, week after week, alone. Sometimes people come in and go but they don’t talk to me. Alone, making decisions I don’t want to make, reminding someone whose reacts and is angry.

This sucks, all of it. The worst is when I have to pee, and I know that no one will ever help me, even to just lean on, that I must always make it myself, whether I fall, whether I don’t, whether I walk into doors or walls, I am on my own, no matter how many people are here. VIHA won’t help with a catheter, no one will help with anything. I really could have used an IV those two days this week, but VIHA doesn’t do live preserving measures. Nor does my doctor. I wish in some ways that they were on a ledge in a mountain and asking me to throw them a line so they can climb up. That’s all I’m asking for, a chance for day to day which isn’t hell. Would they want me to look down and say, ‘I don’t believe in any life preserving measures’ then? Why are they allowed to deem me disposable, but worse, to not even assist in maintaining the life I have? We aren’t allowed to drive like that, or walk through a hospital turning off machines. We aren’t allowed to play God, so who gave them the power of the Devil, to allow suffering?

Why? Why does it have to be this way? Where is MY advocate? Where in all those jobs, in all those wards, in all those doctors is any caring? Any passion?

Lost Thursday?

Let's see, went to bed early Thursday, woke up Firday morning. I remember seizures, I remember the painful cold, I remember overheating, other than that, nada. Oh well, so much for THAT plan.

It wouldn't be so irritating if I hadn't lost Tuesday as well. Go out for a day on Monday, wake up on Friday. Not recommended.

Tuesday, February 07, 2012

Nocturnal full moon graveyards celebrate Year of the Dragon

Nothing says ‘Be mine forever’ like a late night ritual/date at Victoria’s oldest graveyard (1814-1850’s). After reading Stoker’s obsession on the subject of sex, I went looking for a gentleman of good breeding who might lock me in a basement with three extremely horny women (Hey, if it worked for Jonathan Harker in Dracula, why not me? I ask, why not ME???). After this last week or so, I can assure you, I am VERY good in bed. Indeed one worker calls me ‘Sleeping Beauty.’

Luckily for me, Victoria thinks we are Victorians or Edwardians, and so giant monoliths of stone means classy in the sort of women with fans and men with silk waistcoats. Sadly for many it means pretentious with a firm stick up the old….er, yes. But, ala Dorothy Sayers, we do have a full circle ring for those into Campanology (Church bell ringing), eight full bells in the tower at Christ Church Cathedral, all made in Whitechapel London (known for Jack the Ripper) in 1936.The design of the bells and tower is based on Westminster Cathedral. See, I told you we, um, live in delusions of the grandiose. The Tower captain and ringers do everything from Grandsire Doubles & Triples to the Cambridge and Oxford rings. I recommend reading The Nine Tailors by Dorothy Sayers if you want to know WAY too much about bell ringing.

Just a few blocks over is the oldest Chinatown in Canada, at 1858, second only in age to San Francisco. And the Chinese in BC only had to wait 101 years until they got the right to vote in BC. Isn’t that lovely? Oh, sorry, drifting off into social justice and Province shame. This New Year (starting Jan 23rd) is the Year of the Dragon. To celebrate, Chinatown has a new statue, at the end of the street, past the alleys (fan tan alley still the best place for folk music, corsets, kink clothes, and other indie artists). The night was clear and Chinatown emtpy. During the day, with the produce from the shops half covering most of the sidewalk, wheeling down in this area is a challenge, but fan tan alley IS wheelchair accessible, if you are nimble, and good with your caster.

Thanks to Linda for these shots, we talked about going out and getting them but after a day advocating for changes in our library system, I was funky to the core. She took the tripod and camera and got the shots, and I did the text, selection and resizing (74 photos - go team Camera Whores!). The pictures I took during the day, should be out in another 48 hours.

Monday, February 06, 2012

Tale tell heart

I can’t get the heart to work. I know it doesn’t work, because that is what is causing the edema: 1) in the extremities until I exercise, which helps for 2-4 days and 2) in the torso due to autonomic heart failure. But when I sleep, the heart is steady, and now it isn’t anymore. I chose short days, 6 or 4 or 8 hour days instead of 14 hour days because I was constipated and I needed to get the impacting which would hospitalize me dealt with. I eat enough to give energy and sleep to give strength for the intestines and the six things I do to keep that going. I got that clear, but now my heart won’t work. I can’t sleep from the pain of my heart, it shakes the bed. I didn’t have reserves, so I made sure to eat at least twice a day. I didn’t have the edema dealt with so I exercised every 6-9 days for weeks, and the 72 hours of pain that came with it. I haven’t seen the sun or rolled around outside for fun for over a month. I don’t do puzzles, I don’t do anything except focus on what I need to do to survive. I have strong veins, I have the exercise, stomach and intestines are now almost regular, after a two year struggle. I can’t get thinner, or better, or fixed. I am in pain all the time to make sure the effects of painkillers don’t depress the lungs or cause greater constipation. And now, when it is all in balance, my heart it hurts SO much, I can’t go a second without the pain hurting me. When the heart goes, it all goes.

Bowl of Blood

Toilet bowl is full of blood. Plenty of congealed on the TP. Using the halogen flashlight I can't see through it to the bottom to find out if the blood is a fissure, or something cut up inside, or something cut up further up which has worked down. That old Toilet survival game. I try to sleep. Linda has forgotten to put up the pain patches on the board. She says I reminded her 22 hours ago but didn't want to wake me. The patches ran out for six hours before the new are applied, and now 12 hours to go until I have pain control again. Since that means little unless you are on patches, we can all play a game: we skip 1 hour sleep for 1 hour of patches missed - which would be not sleeping the next two days, at which point, things like the sound of people talking a wall or two over, that low murmur which is like taking ice picks to my eyeballs, would be similar I think. Ready to play, set, enjoy.

Friday, February 03, 2012

Music and Film for ASD/OCD and life as Alice.

Michael Nyman is a successful modern composer, whose name you might not know but who did the score for the film The Piano (among dozen’s of others including the horror/Wendigo film Ravenous). With my OCD and ASD, I found his use of repetition with emerging themes soothing. I took his score for The Heart Asks the Pleasure First and would use the rooms at the music college or library to self teach myself the piano (I thought as I could read music, it couldn't be that difficult - the score requires different beats for each hand, just to start). Plus he alternates so that most to all the instruments have the themes, even though they might all be doing different beats. It is hard to understand a band where the pianist is playing 7/5 with one hand and 11/11 with the other while the viola is playing 16/11 and the violin is playing 9/8, etc. So here is one of the more interesting pieces to watch: Chasing Sheep is Best Left to Shepherds.


My favorite of Nyman's compositions is MGV, which you need to buy (available on Amazon, used in two collections), but is a musically account of a rail journey on a French line. Here is (after about 20 seconds), the scenery which the music is composed to give you the essence of combined with the real scenery (as the journey time and the music time is the same).

His films with Peter Greenaway were a combined effort as Greenaway filmed around his music. For me, Drowning by Numbers is on of the top films of my mind structure. First, a girl skips counting and naming the stars, to 100, “once you've counted 100, all the other hundreds are the same.”(this kind of statement which is both true and false is typical of Greenaway) The film is voiced by a boy who makes games with odd rules which only he and some sheep seem to play (like sheep tic tac toe). Meanwhile, in sequence, the numbers from 1 to 100 are see or spoken somewhere in the film, and the colours red and yellow are seen, and later the boy notices and starts sequencing these along with the days people die (Thursday is the highest). Zed and Two Naughts (ZOO) is another one about duality and the films tend toward the OCD mindset. I think the one film I haven’t seen (The Cook, The Thief, his wife and her Lover) is his most popular. You can watch The Daughtsman's Contract in entirety starting HERE (it opens with Castrati, and includes living topiary.

Personally I am in an odd place where I keep trying every day to get up and go with Linda to the Library. So far, I am on attempt seven without success. Sometimes health, sometimes Linda is away, sometimes there are other circumstances. I have also not had a 6 hours, nap and 6 hours up, so this week has been done in 4 hour to 7 hours awake a day, making it fly by. I find I am in another month. It tends to make me feel I have very little control of anything as no matter when I go to bed, or what I sacrifice to get up at 2:00 pm and see the sun, it never occurs. Indeed, my life seems to be mimicking Alice in Wonderland to a large extent right now.

I hope you are having more success than I.