Friday, December 30, 2011

Isolated, but a community. Plus some blog awards and a naked New Year.

Happy New Year. I’m not sure who put the new year in the middle of winter and then told us to try and be happy about that, which is why I like the Japanese custom of timing the start of the year by when the Sakura Blossoms appear. Drinking under fresh cherry tree blossoms with friends OR join the polar club where people chop holes in the ice to go swimming on New Years? I know the type of New Year I would want.

Looking back it has been a hard year, but with the friends I have meet online, as well as individuals locally, I made it to the end of the year. It seems my doctor is mystified that I stay alive: he isn’t putting in a port for an IV for the increasing lapses into light coma, or dealing with any other symptoms but is irritated a bit that I am not dying the way people with cancer usually die. While I don’t HAVE cancer, it seems medically the BC Victoria units are set up for a) Old Age and b) Cancer. That’s it. Hopefully that can change.

This blog is in the Canadian Finals for two catagories, Health and LGBTQI (GLBT as they list it). You can go HERE and make one vote per section. While the dyslexia isn’t always countered and the topics are a bit less diverse, I have tried to keep the blog more than just a ‘oh woe!’ site. I hope that between film and book recommendations, topics are raised which are the ‘taboo’ of health, and other vulnerable minorities. I hope that going out, capturing the experience in word and pictures will continue. So if you choose the Health or GLBT section and vote, I would appreciate it. Voting closes Jan 20th. Oh, and Steampunk Scholar made the finals under culture, go steampunk!

I was notified that Screw Bronze was nominated for a Health Activist Award under category, Best Kept Secret. There isn’t any voting, but if you want to be a jury member for various health blogs, apply HERE. Thank you whomever nominated it.

Okay, all that boring out of the way. One of the gifts was a book of Sex for those with disabilities (which I will review). Several posts, already written but waiting until after new year. And also, more queer blogging. As Librarian on Wheels writes both the disability and queer experience can be a lonely one. But it is one where the people who blog and comment can make a difference by sharing the personal tales, thoughts and experiences.
Looking ahead, some days, just getting to the end of the week seems a huge challenge, but I have booked for Sakura-con. That’s a goal. While my edema goes on, my torso, face, and rest of the body are quite thin with lowered body fat. A little fuzzy tail and ears would honestly help out. I simply burn too hot and eat too little.

But here is to having a nice evening, a glass of water, wine or champagne. I just wish I had fireworks as like the colours and they go boom.

Wednesday, December 28, 2011

Teacher stuffs autistic child in duffel bag, repeatedly.

This is one of those, YOU CAN HELP, quick posts.

Yes, in Mercer County, KY, Chris Baker, a nine year old with autism has his teacher stuffing him into a duffel bag, sealing the top and then putting it in the hall for unknown periods of time. The staff claims it is ‘therapy’ but can’t say what the ‘therapy’ is or what the outcome is supposed to be (kind of like how putting weaker students heads into toilets is ‘therapy?’). Worse, it had been going on for some time, and the parent had never been notified. She only found out when she found a bag in the hall with her son’s voice coming out of it. The school won’t commit to ending the practice. What is worse, the ‘aide’ to assist Chris with his Autism is the one who seems primarily responsible. More at the Guardian online here.

“…she was told that Christopher had had a ball and, when instructed to put it down, had thrown it across the room.

"He did not hurt anyone or himself. I asked, 'Why did you put him in a bag?' She told me it was for therapy. The special education director told me that it had been used for other children."

Besides the whole WTF of the school defending this, the way the putting a nine year old child in the hallway inside a tied bag is somehow good is because it is ‘therapeutic for autism’. The old bait and switch of ‘we know what is best for (insert condition)’ when horrific practices are found. So, other kids aren’t put in the bag, just him and other kids with autism? How lucky for them! (sarcasm alert) While technically not tied into a knot, when the mother demanded her child be removed, the teacher could not open the bag without a considerable delay and loosening of it.

The petition is HERE. And other cases of abuse to children with autism are noted HERE.

Click and hopefully change the world for the better.

UPDATE: due to an update and more information, the bag used was from Abilitations called BagOBalls. It is supposed to have 500-1000 balls to create a safe and open stimming environment. That's probably why is isn't called: "BagOChild". The whole kit costs $299 and requires training. What they used was the bag, which costs $49, the person had no training and without the balls the bag is....just another drawstring bag. A strong bag, which happens to be large enough to put a child into. They acted against the maker's instructions, closed and tighten the drawstring on the child, then left them isolated without even medical safeguard supervision.

Sunday, December 25, 2011

A time for dancing.

We all face our pain in different ways. Escape it, block it, avoid it, group meetings, late nights, routines, blame ourselves, blame others, pretend the wound never happened.

When you die, they dehumanize you. It is a coping response: they slot you and box you and you are the patient, not The Caregiver, or The Spouse, The Support, The Care Provider, The Family, The one in grief, the one in pain. And they are.

But it is a person dying, and they have a name, and they have hobbies, jobs, jokes, favorite colors and flavors. They are not looking for a 20 foot room to die in. My grandmother kept using her walker every day to explore the hospital. She had flown at 65 on a mail carrier to the Arctic to stay with an Inuit Tribe for two weeks. She talked about her travels in China, and Russia, and every place that she had taught in her school and read about in National Geographic. She suffocated because a worker paid $19.68 an hour didn’t hook her nosepiece to the oxygen.

No one looks for a 20 foot white room to die in. I have a name, I have a history, I have desires and plans, just like you. Elizabeth McClung, who had a wet dream last night of doing a very complicated sexual position. I woke to a body paralyzed, thinking, “Wow, I didn’t know Linda was so flexible.” It is the little, odd, usual, lewd and tender things which combine to make us into a person, and to remain so until the last beat of the heart.

Today I danced, perhaps only the top half, but I dance. There is time in life to dance, even during the dying. The intertwining is in all of us, to some degree or another. So dance.

Friday, December 23, 2011

Longing: By the Waters of Babylon

By the Waters of Babylon; there we weep and sat down

Psalm 137, the psalm of exile and longing seems appropriate this time of year. As appealing as Ayn Rand seems we do not construct our life alone. Sometimes the decisions are made by others and sometimes life just happens to us. And while this season effuses a home and family, for many of us, those are the lights of families, of towns, twinkling attractively in idea of inclusion, of home. My parents, Murray and Patricia McClung moved three times before I was 5, and 19 times from 7 to 18, so there is ‘coming home’ for me.

My parents, when I first became ill, chose to withdraw from me, and any minimal assistance until three years ago, they simply stopped being my parents and disappeared. I have not seen them since then.

My brother Peter R. McClung and his wife Susan do not approve of my ‘lifestyle’ and will not meet me, or in the last years communicate. This means I have seen my teen nephew once. I don’t know if he gets my communications.

Where I grew up, there were ‘outsiders’ and ‘chosen ones’ and since ‘outsiders’ were dead already, not having the True God in them, communication, interaction was all forbidden. When I came out, I lost every friend I had: I am already dead to all those I knew for 20 years.

So, there is no ‘coming home’ for me.

This time of year, as people disappear into what I hear from them over and over again is ‘important’ reminds me that I am one of the many who is outside, an Exile whose homeland is gone. Much like the story in the Pslam, where those forced marched to Babylon, the remnants of the kingdom of Judah, homeland destroyed, taken to another land, given new names, and then told, ‘sing us those songs of your homeland. Sing us those songs of your happiness and joy in your land.’

People can choose to come together and people can choose to be apart. I can forgive, I can send letters or emails, but without the other choosing to connect it becomes just another dead letter box.

If you don’t know what I am talking about, or are too busy with family and parties and engagements to understand what I mean, that’s great. But for the rest of us, here is to those aspects of longing, even for a place or live that isn’t possible. I ask myself almost daily, “Why do I have to die?” Here is for the dreams unfulfilled, and the hope that is crushed with them.

I think all of us, particularly those that wear the masks, have a schism between what we long for, what would give us peace, the aspects of the self and the life lived which are a life in mourning. Sometimes it seem I have been exiled from a land I was never a part of, may have never visited, and as much as I love travel and seeing and learning new things, there are times where I dearly ache for ‘home’, though there isn’t one. And no Peter, I don’t believe that money solves everything, though being ill without much, or in the inevitable debt (as Lene writes about) tends to highlight the social separation.

Today, we remember, and yearn.

Monday, December 19, 2011

"Wanna die? I'll be right over...what, 'live' you say? Sorry, another call coming in." BC official care policy

After going out on Friday, I went to sleep and stayed asleep until Sunday. I couldn’t be woken after the 12 hour mark past when I had eaten. Linda called the VIHA palliative help line to follow up on the request earlier in the week to get an IV to push fluids and nutrients.

By the time VIHA called later Sunday, I was awake. The VIHA district nurse said regarding care, that I had signed a DNR. I told them that while they asked (indeed, demanded), I had not. When entering VIHA care, the requested that I sign a DNR. When I was deemed eligible for palliative they again requested a DNR (‘do not resuscitate’). I choose not to, they didn't like it but said they accepted it. See, I want to live as long and as much as possible. The nurse said, "That's not standard." (the not wanting to die) I assumed at the time she meant those IN the program, those dying.

The attitude which we have been getting is that palliative is for those who are going to die to get on with it as cost effectively as possible. It is assumed that just because you have a terminal disease or are end stage, or you have organs shutting down that you should die as soon as possible and I think talking to me, the person dying, not the family unnerves them. Though I was praised by G, the nurse for having a 'good spirit' about death, when I made a joke about it.

Linda and I were and are both disappointed when any simple action which could be taken care of by a response team we were told to go to the GP. Our GP has a five week wait to get in. The response was, 'and...'

G. who called from VIHA said, “What is it exactly you want?”

“I want to live.” And repeated Linda’s request for an IV or a port for when an IV was needed. We had been told that the response team was for dying at home with the comforts AND medical care. An IV for pain medication they would consider, not for fluids.

G replied, “We do NOT replenish fluids or engage in life preserving actions.” The VIHA district nurse told me was the official policy. But said that I could appeal and ‘be considered on a case by case basis.’

Linda and I were stunned. To avoid clogging the ER, we were told the palliative program would help medically in the home. The last few times we’ve gone to ER it has been, ‘here’s some morphine, not much we can do, there is the door.’

The GP thinks that a shutting down of organs is of the top two ways I will die and to increase the chance of coming back, and IV would allow the toxins building up to be flushed. We were told that a nurse could be sent if I was incontinent to show Linda how to put down a pad. No, it was that the bladder and liver were shutting down and simply not producing anything, or once awake, all that came out was clear water, not yellow, no proteins.

Having visited the palliative centre, the rooms, which are mostly private have lounge chairs and sleeper chairs for family members but for the person dying, there is the same hospital bed and a telly, a mini one on an arm for shared rooms, as the only distraction.

‘I’ve told you where else you can go (the GP), and I have to take another call.’ And G hung up.

If there is some sort of care for those, non-cancer, who are having a failing central nervous system and autonomic system in Victoria, we would love to know about it. It is terrifying to go to sleep and not know how many days it might be until I wake up again. But also, the incentive, once awake, to DO, knowing that the medico’s, whose numbers and salaries eat up the $1,000,000 per bed per year fundraising and budget at the hospice along with TWO emergency response teams, and boasting 500 volunteers, it seems odd that a $300-400 telly is the amount of ‘comfort and quality of life’ beyond painkillers, which is offered or available. And in the community? So far, zero the hero. We were given a number and told if there was a medical issue or change to call it.

Linda has called it, and nothing that happens seems to be anything they can do something about. Last time, it was about organ failure and massive bleeding, I was told a ‘spiritual guide’ would talk to me in two hours. They called four days later, then wondered if they had offended me by something they said when I did not answer (I did not answer because I was in an unresponsive unconscious state).

When the district nurse says the official policy is to NOT try to preserve life with a simple IV even when the person wants it…it seems a case of cost over care medicine in extreme.

Saturday, December 17, 2011

Library sale, Tracy Chapman, 'Danger Girl' and Prohibition

I was off to the library, alone! The library was having a sale on DVD’s and CD’s and Linda had gone the night before to find out when, since it takes about 2 hours to get totally ready to leave, sometimes three hours. Linda had to drop off the van for putting on the tires and a tune up (huzzah, no skidding fireball while driving the mountain roads here for us!). I happen to wake at 6:30: after going to bed Wednesday.

My body had stopped, functions had stopped, and so I needed to eat in order to have the energy to do things like pee, breath consistantly, etc. Linda had dropped in at closing the night before to ask when they would have the sale as it was sort of word of mouth, we had heard about it on Tues. They said the start time for the sale was 10:00 but would start a ‘little earlier.’ They opened at 9:00 am. I got ready, and left at 9:36 and arrived 9:47 to find all the tables set up and everyone already buying. Turns out they started when the opened the door. No PS3, Xbox, or other games were left, but lots of CD’s and a couple DVD’s. After looking for an hour, I asked and they looked in the four boxes and no other DVD’s were coming out. So I checked the CD's closely.

I was hoping to get some doubles of the new DVD titles, or sets of DVD’s. I asked the staff and there wasn’t much in DVD’s to sell (so I didn't miss too much...those which 'got away'), mostly it was CD’s which had been donated or were not for use. Several were Canadian artists, like Enya, which must have been donated. There seemed to be some collections, as I found sections where there were hundreds of brand new CD’s, not processed through the library in themes. For example, I got almost the complete works of Tracy Chapman.

Tracy Chapman, beyond her husky voice will always be sexual to me. This is because my first summer of late teen when trusted to be on my own, I biked 500 miles of BC, then stayed with ‘Danger Girl’ (A girl I was crushing on who liked doing dangerous things – a middle sister, the next middle sister I knew did drove demo derbies for fun to give an example). So, while parents were away, we hung inside, her head on my stomach, or sprawled on each other, the music up. Then going swimming in the outside pool, where there was some make-out intertwining due to her ‘ex’. Several times she ‘felt’ that an ‘ex’ (which I never met, or saw) was watching her so she wanted me to make out with her to make him mad. Needless to say, with hormones awash, I was someone between thanking God for this fantasy coming true and outing myself. It was like she could read my mind. Now, I think, being a worldly wise girl who went clubbing every night (and dragged me along to meet dubious people with odd sweat or who were just scary. She was a total attention junkie (including from Biker Gang guys who had one eye if they gave her attention and some blow) and knew my interest as she used to dance with me if she wasn’t getting enough attention. And she would only dance up on the stands, not the floor, the raised platforms, then drop me as soon as a guy with money or more came along. I was hooked on her as having her use my body to get back at guys was FINE WITH ME! I was just worried her father of many guns was going to find out about this (God, he trusted us so much he took me along with her while he went ‘hunting’, as one daughter loved killing, and so we just snuck off and had, um…adventures, instead).

So Tracy Chapman.

I also picked up some original comedy from this early Bob Newhart to Steve Wright, all Brand New. Even though the library was hot, I stayed and looked for early gospel, folk and found this out of print CD on music of Prohibition (off of a VHS series from A&E). I used the library computers to make sure there weren’t any duds, those I put back, or ones that were used. I ended up with a couple signed copies of CD’s, no one as famous as Jewel but fairly famous. I like the Prohibition CD, as the artists are taken from top quality gramaphone recordings (I also got a 2 disc new CD collection of Fats Domino). Who can’t love a collection about our obsession with booze and music with not just Louis Armstrong and Cab Calloway but Don Redman, Chick Webb and his Orchestra, Bert Williams, Bennie Moten, State Street Swingers and the Mississippi Sheiks among others. Some of the songs aren’t on Youtube, so thanks to the Library of Congress for allowing use of photos, I got some stills and made a video for 'Charleston by the California Ramblers' (on Music of Prohibition).

I am trying to figure out a way to get these to the right homes. Some sites have contests, where people win stuff, and I might end up doing that with some stuff but I think if people want something like Bob Newhart or Steve Wright or other CD’s I will be displaying, why not just tell me and I will send it to you. And you can get a copy from my wishlist of Whistle for about 5 cents with shipping from Amazon in exchange. That way we both get something we like? It is just I am not into accumulating things but I also hate to pass up a sale. And after three hours searching and then trying to get out before they called 911 was hard going. I was so wiped three different people pushed me home, just strangers who saw how I looked. Luckily I was only a few blocks away.

I think I am going to listen to some more Tracy Chapman, it is a very um, full body experience.

Friday, December 16, 2011

come out of the morgue

After two days of not being able to get up for more than an hour or two or to be up, to wake at all, Elizabeth asked Linda to contact the palliative unit to come get her. But, as Elizabeth was told on Monday she would hear from them, and did not until Thursday, when she was unconscious and too weak for a call…it seems even in going down, there are bloody delays. Even when it takes the will to get up, to eat so that the organs of the body, the liver, the bladder, start working again, it is not enough.

When will I get the time to write again? Does a picture of me lying unconscious show you something, even after 17 hours a day of it, or 22, day after day of unconscious and pee that is pure white, with no protein at all because everything is shut down. A picture of five layers of quilts atop me, because my body cannot heat me anymore, does not have the energy or the capacity. Or the bleeding, from the nose, and the ear, and the anus, all the time. IS that what there should be pictures of?

I watched this the other day and I realize that maybe people don’t know what to say and yet, since I have no knowledge of anyone saying or thinking anything except Linda who talks less and less on the basis if you can’t say anything nice don’t say anything at all.

I have been worried that every month I live, which seems to burn years out of my body, it makes my organs not useful for donation. That was the one blessing of dying early, was the gift of life to someone else. Only it seems this disease destroys everything. You were right, you roller skating peds palliative doctor. You were right when you told me you wouldn’t watch this happen to me, that it is a cruelty beyond viewing. Come back to the living, and out of the morgue. For I will soon be gone.

Wednesday, December 14, 2011

A place in between: the loss at Xmas

“There’s alive and there’s dead. And there’s a worse place in between em, that I hope you won’t know nothing about”
from award winning period film, Get Low

I’ve been trying to get things in order to keep on going. There is a harsh brutality to it, but when you are in the place between living and dead, it is best to get to one or the other. Within that, there is no space for joy or Xmas as I have gone for a two hour nap and woken up a day later. I was awake 12 hours over almost four days that way. It is no way to keep living.

I ran out of energy to eat, the face angular and body resting while the torso heaves for oxygen. I wish for those who think that Xmas time is flying by that they never know what it means to watch life literally fly by. And to realize that oft times it is the struggles of those you can’t see, against the problems you haven’t heard about which have it the worst. Uncertainty in having enough money for toothpaste: that’s not a metaphor, it is reality. Which is why, if lying paralyzed for hours overheating is hell in a skin barely baked, or in a chair with headrest holding the head paralyzed by watching UK DVD’s or something else, that is better.

For me Xmas is about loss and will always be about loss. The loss of family. The loss of belonging. That first boxing day and Xmas day in the UK, where we sat freezing in an empty flat, and alone, only just having bought a pot big enough for making Chili the day before. It was the knowing that others are and were being welcomed, are part of something which makes it all the more painful. No wonder, with the isolation and evaluation socially and found wanting that suicides go up.

I found a good film called Triageon dealing with the grief both of having a disease, or sudden chronic condition. It shows, more than tells, those reasons that those who know the ‘war stories’ of disability or medicos, or having it grim tend to stick together, tend to understand without having to know all the words. It is also for those who grieve loss. Called Triage, it is was not what I was expecting, and it was more than I was expecting. Kurdish War film, film on war photographers, the questions on grief and blame, and more.

My region 2, 3 and 4 DVD and DVD sets I am putting up for quick sale so they can go to good homes. Last time I did this, I couldn’t post a blog before they sold, so I will try for Thursday.

I hope you have the joy of living. I hope that you are able to tell all your stories. I hope you don’t mind getting gifts from me in Dec or Jan or Feb or after as I keep going, onward. Not easy, not what I want to be when I want to be, but onward.

Always onward. An example: The film ‘Get Low’ was good writing by after five years it had been rejected by every studio at least three times. They still kept on, and nominated for 11 awards, winning 2 so far, a 40% profit just due to cinema sales. Why? Because it is a story where you don’t know what is going to happen next: the best kind of stories.

Thursday, December 08, 2011

Hugo, a (steampunk) film review and an alternate solar system

After a two month wait my disability film tickets came and I went to see The Invention of Hugo Cabret (Hugo) based on the book by Brian Selznick. It is choc-a-bloc with top notch actors in an Amile french film style meets steampunk. Based on the Paris train station in 1930, and a now orphan boy who keeps the clocks of the station running while he tries to repair the project his father and he started together: the Automation (like the kind used in old magic shows and entertainment for kings and courts).

Hugo, as a film, produced by Johnny Depp, whose theme is broken-ness (akin to Scissorhands), I was disappointed to see the disabled used as comedy and villain both. The film is not just about early films, but has tucked into screen flashes and background posters works from Dali and Hugo running past James Joyce drinking at a cafĂ© among many of the historical joys. Isabelle, who perhaps has read a few too many books and seems a bit TOO enthused with ‘an adventure’ ala Anne of Green Gables, particularly when she is waxing on how it is okay for men to cry like Heathcliffe does. Still, it makes her, as well as the bookseller, stand out characters, and the ironwork and Edwardian buildings lush. Winner already of several awards I give it a big thumb up for seeing on the large screen. I hope that the Second Sherlock Holmes film keeps the Victorian enthusiasm alive (trailer).

I did however spend a great deal of time in Hugo going, 'Where do I know those lips?', asking the same question over and over about Isabelle. So you don't have to ask and can just enjoy the film, she played Hit Girl in Kick-Ass. So good in BOTH roles.

Here is a fun upload for those who like solar system models as it holds not just our current (Copernican) but the Tychonian’s earth centric model. Don’t forget to click the music and the phases of the moon.

I hope your weekend is fun. The trailer for Hugo is below (a great trailer and an even better movie), the ‘sky blue’ officer with his alliteration is only surpassed by his bizarre phone conversations. I have found that Warren Spector of my favorite game Dues Ex (a non-violent, non-linear, cyber-punk game of old) and Thief, went on to do Epic Mickey, a game about the lost or forgotten Disney characters and rides in a mirror realm including Mickey’s lost brother (I added it to my wish list, and would welcome your reviews if you have played it).

Tuesday, December 06, 2011

This little light of mine....

The one advantage of chronic illness isolation is introspection. That and hearing burglars who aren’t there.

“Burglar? Oh Burglar? Don’t kill me…the laptop is old!”

This comes up often as workers on the first shift with me keep saying, “I’ve never been in here before.” Um, okay, I believe you. Or is that you making the creaking noises in the hallway? I suppose someone new to your home who knows where everything is would be creepier.

This is important as I sometimes watch movies, the Sci Fi ones, and the adventure ones by a little tea light from the Ghibli store in Japan. A private shopper got it and some ghibli treasures for me. This is from Kiki’s Delivery Service (oh Jiji the cat, who can’t love a talking cat!). It has four pictures and a wrought iron frame of different depths (all the better for the eyes to follow you around). There is an ad for Kiki’s Delivery service and three more of cats. I find, when the wind whistles at zero degrees through the space by the air con, one candle is enough to warm up the room. With glass as an insulator, and the metal to hold the heat, for a tea candle, I get lots of comfort and warmth.

I have finally been putting together the thanks/you're cool/have fun packages which I wanted sent to people by Halloween (a holiday of good cheer and candy). (first of a couple piles for this week. But the post office is busy? Confound me but it turns out there is some holiday coming up in North America which increases the packages in the post. Gee whiz, Batman, that sure was poor timing for me.

GIFT NOTICE: If you are a Ghibli film or Ghibli product lover, now would be a good time to drop a line (mpshiel@hotmail.com) and let me know because besides getting this for me and a microfleece blanket for Linda’s bed, I managed to get some of the limited edition greeting cards with bromhide color cards from: Laputa: Castle in the Sky, Whisper of the Heart, Kiki’s Delivery Service, Totoro and Porco Rosso. As Totoro is available here and I was using a personal shopper, I ended up getting more Kiki, and Laputa items. They have planters which are so cute, I want a garden just to use them! So do me a solid fav and let me know if you like Ghibli films and which ones, so I can send the right rarity to you (oh, I have a little Spirited Away).

I also did some postcards, with the help of Linda and Cheryl, and pulled a three hour sleep night to get it all done. That might be why I crashed on Monday and started hallucinating, including having one of those ‘being hunted down’ dreams. This led to the,

“Quick, quick, bring me a gun!”

Careworker: “Uhh…no, it is a dream, you don’t need your gun.”

Elizabeth, “Yes, I do, but a knife for now, or a baseball bat…what kind of weapons can you get your hands on.”

Careworker, “I think you may still be sleeping. You are safe you don’t need a knife.”

Elizabeth, “Knives, yes, a gun would be better, I’m not sleeping don’t you realize that....zzzzzzzzzzzz”

I am aiming for finishing the number of total postcards at the end of year at 6,500. Yup, six thousand five hundred postcards in total, zowie! I hope to make the world a bit better, and I can honestly say that between me and thou, we have probably kept a few postal workers going.

Oh, I also got Linda those tires. She was very excited. She was telling me they have the little rubber bits on the side that are of no use, that’s how near new these tires are. Wow, the things to get excited over. Linda has written a post over at Girl’s Gotta Fly about trying to make the two ends of the string meet. It is the small things that break down after a year or two, or which you think, 'this will last till we get a better job', only now it is two years. So the patches for transderm and other items really are important. I was able to get the batteries. The link for the wish list is on the right (it has a few items in the Amazon.co.uk, like EMLA which we need pretty badly, as they want more and more blood), along with gift cards. If they don't send to a P.O. Box, please let Linda know at Linda.mcclung(at)shaw.ca - she has an address in Port Angeles for those who don't ship to post office boxes.

Linda also has an interview for a good job on Friday. I'm trying to be as supportive as can be. So lets root for Linda!

Saturday, December 03, 2011

Beth's World: broken-ness

‘When holding a knife to your throat, it is hard to wash behind the knees while showering.’ Safety message from the brain (it thinks there isn’t enough humor blogged).

I shower because it is what I love, and cannot do. I overheat. I love hot showers.

It has been two years since limbo. And I’ve fought every day. The hero’s path in wars against the mind is murky, always silent, never mentioned but one endless battle. I only want to write the story of my life, the life of silent wars into my skin, through my throat.
Being bipolar and depression don’t disappear. They rely on medications rejected by a melting brain. The erosion of the frontal lobe barriers makes me feel like a pichinko machine with a couple dozen steel balls rattling down me. My body shakes. That is probably from my heart, the upper chambers overcompensating, but I can’t make it stop anymore than I can make the whine of steel grinding on steel wheels that shrieks in my brain stop. Linda avoids talking about travel for work, which she has to do weekly, not because I am not calm and reasonable, but because while the words my mouth speak say calm I can’t STOP my face from showing hurt, loss and most of all jealousy. Outside.

This is Pounce, my number 2 friend. In four or five days I might see Linda, and that is all for humans. The workers are all new. They avoid me.

I lost a friend last week. They don’t want to come here because I bleed when I exercise. I fall, and I bleed and I pass out. It makes her ‘uncomfortable’. The red block on the bottom is a chemical burn, and the rest are bruises from a single fall of that day. I have six or seven chemical burns, until we pull off the Fentanyl tonight, then I’ll have more. GP doubled the breakthrough pill. If I want to live, I have to go on, alone. It makes me ‘uncomfortable’ too.

Other times my mind’s emotions are like a big ole’ pinball slamming a hit on panels, knocking them down, BAM, BAM, BAM. Now, like a prism, a word can reverberate until that is all I hear, and my emotions are projected, expanded. I stare at the hole the weeping sorrow bore through me. I know that I can’t control my emotional reactions but I keep trying. I tell myself, when she reacts back, that it isn’t anyone’s fault. Is that what she tells herself too, or did she forget that I'm in here fighting and frightened? I try, for years, to not cut this story into me, when I ache for it. This time when I fall, can I stay down?

So I took a bunch of dilaudid and drank booze from the bottle. I try to put it down, but can’t. Just drop it and take the knife into the shower.

How, after two years of trying to make a string too short meet, could it not be uncomfortable? I want to talk to my grandfather. How do I catch Linda from falling? How do I stop her from being too hard, and me from being too selfish? I did what I must to get to the next week or two and it cost me my last friend. When did my body stop being my friend? Now it makes me so alien that I hallucinate from the pain: waterfalls and horses are popular, but so are auditory hallucinations of two people having a conversation (the more exhausted I am, the more these two keep me awake). How tired do I have to be to sleep through a radio only I can hear?

I stagger in the shower, Linda says she see the broken-ness.

Just because I know where everyone WANTS me to go doesn’t mean I don’t feel lost too. I am supposed to be in free fall with a SPLAT ending but it isn’t like that. It is more like being guided along ramps until, I hope, there is a kill blow up ahead. But no, it is just more paperwork.

God, wouldn't a donut be sufficient about now? Succulant? Sugar. suitable? No, just satisfying.