Friday, June 29, 2012

The Nash Rambler 'Beep Beep'

On a sunny late evening, with temperate weather, we went out for a butterscotch sundae at the old Beacon Hill Drive In (next to the Heritage House of Beacon School). Parked there was a beautiful, original, down to the hubcaps, Nash Rambler. I am leaning on the hiking pole to show you perspective of me to the vehicle (me tall, car small).

The driving area was filled with an assortment of pull levers and dials, all unmarked. I wonder what they all do?  I can see the 'grandma's car' seats which, during summer, I would literally have to peel my skin from.  Or worse, the yelps when trying to sit down on the hot plastic after a day at the beach, "Ahhhhh" the octaves climbing as the plastic settled into the flesh.  Only upon seeing this and how small it is did I finally understand the song ‘Beep Beep’ by the Playmates, about the Nash taking on a Caddy.

And here, added value irony at no additional charge.

For those who have never heard the song, ‘Beep Beep’ – the last three verses will take the same time as the first one, so hang on.

Tuesday, June 26, 2012

Bag of skin and slime: Restless

How difficult to talk about the aspects of death or disease when we work very hard culturally to avoid mentioning that we are a biological bag of skin holding lots of ick and slime. And when the mix of an amino acid bath and pulsating leeching biotubing stops functioning, it is not killing an Ripley Scott alien but the stomach and upper intestine not digesting.

Similarly, the heat of forearms, and other core muscles comes from a body fatigued and a system which breaks down what is easiest. Muscle is easier than fat, though that causes internal bleeding, as so many ironman tri-athletes have found out.

Beth moaning, arms covered in goosebumps and shaking, part of her face sliding down, frozen, mumbling tongue, “The bones, oh god, the bones, I can’t,” The panting takes over, as it has been every few minutes, unable to breath, it feels like suffocation. Sometimes I pass out, I wake up unable to see with the ambi-bag, in and out, in and out. It rocks my ribs, like the waves lapping against the shore. I’ve been shaking for 11 hours, my whole body, too weak to move, my jaw tired from trying to keep the teeth from chattering. My extremities are burning, covered with goosebumps, I am burning up everywhere.

NDY, Not Dead Yet is different than the deliberate life lived. Overheating, the fevers and changes in mental status, as well as the tints that the world is seen through; realities combining pain, fever and depression lead to conclusions which are not pleasant for anyone – particularly the one who lives them.

In bed, it hurts beyond screaming from so much at once. Any noise, any touch or movement combines to become unendurable. Sleeping pill after sleeping pill, I can’t sleep, because of the pain. I am blind now, and in my head the messages are coming in: Linda putting on one blanket, later two, as my body must be losing heat, or getting cold, or shivering. I beg, ‘Please, Please, Please.’

One night I scream and moan for six hours, though there is passing out and silence or rasping but no sleep. “Horse tail, horse tail…” I mumble, trying to explain that the horsetail cluster is aflame, and the whole lower spine is too painful to lie upon, yet, I am not strong enough to be able to breath in any other position.

I am up, sometimes, rational less than that. The nausea is so strong, yet compared to everything else flooding in, seems hardly worth mentioning. Eating, as Linda and I decide to try, though even after days, what comes out of me makes me feel a slug or snail.

“I’m up to watch the film”

Linda: “Mmmmm”

Beth: “It’s called ‘Breastless’, about tall women who are cursed with size A’s through life”

Linda snorts,

She brings me food.

“And Ice Cream?” I ask.

“Do you WANT ice cream?”

B: “You say strange sentences that make no sense.” (My grandfather’s sage advice was to eat dessert first as needed, just in case an emergency occurred).

“And Ice Cream, it is in the freezer bag.”

Beth: “And now to your favorite snack.”

Linda: “Wha?”

Beth: “Sleep, it’s your favorite snack, your beloved hobby,”

Linda giggles.

Beth, “…your escape, and tasty treat.”
The film is called Restless, not Breastless. A story about two damaged teenagers, one with cancer, one without parents, who meet at funerals, ala Harold and Maude, though these two are saturated with death. The girl is tired of the lies, the whole round and round of cancer: “They always tell me I’m brave, after every test, or needle….makes me wonder how the non-brave kids act.”

After a funeral her asks her, “Wanna meet my parents?”

Her: “Sure.”

He leads her over to a gravestone..stares at it then responds, “Yes, I’m eating! Why do you always ask that first.”

They date. They go to the morgue at the hospital. The attendant finds them: “excuse me?! Can I help you?”

“No, we were just browsing, thanks.” He says and offers the girl his arm. Security is called, who recognizes her, ‘She’s a Webber Kid.” Webber is the children’s oncology wing.

“Webber kids? That what they call us?”

“Sometimes. Cancer kids.”

No! Kids WITH cancer.”

“What’s the difference?”

“There’s a difference.”
In all living, there will be pain. To see a film which shows the risk/withdrawal cycle makes me feel like I have a support group of sorts: the damaged sort, who’s silences need no explaining and whose humor has gotten too macabre for most.

I feel like I live in a hall of mirrors, and the last thing I want is to look at myself.

Beth: “I didn’t pee, not last night, or today, and what finally came was transparent. When I was wasting, starving, dying, it was okay, everything shutting down, but now… (things are supposed to be better?)”

Linda: “Well, you didn’t have the energy yesterday. Probably the kidneys will work tomorrow and it will go back to yellow.”

Beth: “I guess.”

Last time they didn’t work for four days.

I want more than to not be dead, I want to be alive; or have the conscious choice to go. Once you are in ‘palliative’ beds, it is often a mix of starvation and drugs. Three relatives died that way. I think, if it comes to starving, I’d rather do it myself. I’d rather not do it at all, yet all doctors or organizations or those who are to help tell me is how I should be dead, and when it is hard, hard, I think they are probably right. They should volunteer for crisis lines.

Wednesday, June 20, 2012

Last lost

In throwing over things in order to survive I threw too many essentials.  It is hard to eat.  I am relieved.  Perhaps it can be over soon.  There comes a time when not dying isn't the same as living.  Liiving in a fog.   It is cool enough inside to let the shock take over.  Thank you for the kindness, the gummies, the postcards, letters, gift and I am sorry that when ever I leave, now or in a little while, I will be endebted.  I've spent so long terrified; I can't remembering going to sleep or waking when I wasn't afraid. 

Monday, June 18, 2012

Lincoln's Shadow, cultural taboos and a bit of 'grit'

I believe that most presidents are haunted by the shadows; that in four or eight years they will not, and cannot combine the eloquence, common tongue, brevity and insight of Jefferson or Lincoln. Abraham Lincoln most of all.

In 268 words with the Gettysburg Address, he centered the present in all that America had struggled with, and the lofty ideals it struggled towards. He addressed the idea of the individual as part of the nation but also how the concept of nation is greater than an individual. He reinforced that the concept should not be lost but held in the simplicity that those who are part of the nation ARE the nation, and should be represented by them. He held the present in the palm of his hand, taking responsibility for articulating the reasons for sacrifice, whether a person agreed with them all or not. And at the same time, espoused openly a radical idea of equality, one which was taboo, and though it took 149 years from then until now, when a Black American is the president, a representative of the people, in a government for the people, it is a topic still ringed in taboos. He reminded all of his limits as a President, that he could not, in grandstanding, in ringing speeches, turn something sacred, no matter how many influential individuals might cheer. It was the acts of farmers, and school teachers and the sadness that so many who died, who spilled blood, who lost innocence of the soul which made the ground sacred. Because they died believing that they did not act in vain, and their lives and deaths had meaning. Here, he took upon the voice of President, the elected voice of the people to take responsibility, that he act until their vision was a reality. And looking forward unto the day when the nation existed under new freedom, and equal freedom in action and representation.

All in 268 words. It seems we are in dire need for a President who can see where we have come, the inequities which still exist, those who fight and die as they lived, still attempting change. I hope for one who speaks as a President on what needs to and will occur.

But in quips or notes, Lincoln’s words are ones which manage to hold the highest idealism, but always with the present knowledge of his own and others human limitations. “Am I not destroying my enemies when I make friends of them?”, “He has a right to criticize, who has a heart to help.” Or the simple, “Everyone like a compliment.”

After Bush was elected, along with so many others, on the backs of the fear of LGBTQIA and that people like myself would love openly, I was saddened beyond words. There is ugliness in all of us, and I respect those who, like I do, seek within the self, as I look in myself, to root it out.

President Bush was open with his hate, and it was ugly, and unforgettable when he attacked same sex marriage in a State of the Union address.  Astounded still and hurt when later said that the threat of Linda and I together was a greater threat to the US than terrorism. He was a man who inspired a bigoted ugliness in those who felt it safe to do so, like how one person making racial jokes can, by position, influence or location, inspire others to open racism to ‘fit it’, or ‘be one of the gang.’ That kind of scarring ugliness spread to election ads of candidates as each seemed to scramble to assure all that they would use their power to ensure the elimination of a relationship like Linda’s and myself, like friends of ours, like all the LGBT couples. We came back to Canada to be married not just in the eyes of God, but in the eyes of government as well: equal at last, or so it seemed. Meanwhile, I am a US citizen, Linda is not, and so Linda cannot take, as spouse, what is rightfully hers: the green card, to live and work with her spouse, leading to citizenship herself. The right of a family: our family, is sacrificed not for the future of a nation, but for the ugly fear of the unknown, and the taboo.

I know, that Lincoln was as fallible as any of us, but seemed humble enough to be aware of it. “Die when I may, I want it said of me by those who knew me best, that I always plucked a thistle and planted a flower where I thought a flower would grow.”

It would be an honor to have such said of me. Such simplicity and openness is something which is often feared, and rarely duplicated in politics. Why do Presidents tell us that lying to us is in our best interest, and we, individually and as a nation accept it? It seems the idea of a leader ‘of the people’ wasn’t our future after all.

I remember discussing with Linda, as we could see the pendulum turn at the end against Bush and whomever the Democrats put up would win. It was between a white woman, Hillary Clinton, and a Black male, Barack Obama. And the election of either, and one would be elected, would set a precedent, and change the asperations of the youth, the possibilities of the present, and tiptoe around two of America’s cultural issues: the stereotypes of non-whites, particularly blacks in the US and the idea of true equality for women. Which, we debated, did the Democrats think a step too far for the general population to follow? We watched from Europe, with Germany’s female leader, as well as the history of female leaders in most European countries, and representation ranging from Sweden and Denmark’s 40%+ of parliament members to the mid 20’s in more conservative nations. The US had less than 10% females, in congress and senate, even now, while minorities combined, represented 16-17%.

I thought, naively, that with all other ‘western’ countries having had a female leader, including Canada, that a female would be more acceptable than the idea of a black leader over a white congress. I based this on cultural popular representation when TV in the last 40 years has failed to put individuals of color in anything more than a ‘supporting role’ (unless I am missing a series of shows). When I think back on the ‘big name’ or ‘leading edge’ shows from HBO, Showtime, or other stations like Rome, LOST, Breaking Bad, 24, Criminal Mind, Hawaii Five-0, Law and Order, Deadwood, Son’s of Anarchy, Game of Thrones, NCIS, etc. These shows say that the world is concerned over ‘the problems of white guys’ while the few high production shows showing individuals of color, like The Wire and Treme have leads and side individuals who are criminals, addicts, disenfranchised and those abused by poverty, or abused the system which seems to make living harder, not easier for them, or both.

While watching Men in Black III with Linda, the character J goes to what he thinks is K's apartment.  It is occupied by a white mother with several small children.  J, played by Will Ferrell, has a craving for chocolate milk and asks to drink the milk from one of the children.  A child, perhaps 6 or 7 asks the mother, "Why is the President drinking our choclate milk?"

I was stunned, and turned to Linda and whispered, "Was that a joke?  That most American's can't tell the difference between two black men?"   I still can't tell if that was mocking general practice as later agent J goes back to 1969 and is pulled over on the assumption that because he is driving a nice car, it must be stolen.   Which in some parts of LA, while I grew up, was no joke at all, but a sad reality.  However, racial profiling in the LAPD had been demonstrated repeated until Rodney King became the 'last straw.'  Then President Bush brought racial profiling back and campaigns against Muslim men running for congress used to include hints or accusations of connections to Terrorism or 'Anti-American.'  A good example of views can be seen in 30 days, the show where individuals live for 30 days in a different culture within the US.  The white midwest male who lived with the Muslim family at first was worried he was being 'converted' but finding a spiritual leader who could help explain the practices for him helped him understand a lot.  But his attempts to get signatures on a petition against violence towards Muslims had people calling him some horrid things, and 'Anti-American' was one of the nicest. 

Obama opened a door, and I hope that after four years, is judged on his merits rather than his skin color.  And it is a possibility and example of the highest office that I hope other minorities can walk through, and other nations, like the UK to have a Prime Minister of 'Asian' heritage (the description in the UK for individuals with connections to India). Though the frequent claims that because President Obama is black, or a person of color he thus must not be from America at all (The first time I heard this, I asked if the person suggesting it was making some sort of April 1st joke, it seemed so....absurd) demonstrates the problems 150 years later on a nation, united in equality.

On a side note, I finished watching True Grit, a Cohen Brothers film, with a female protagonist, aged 14, who seeks a man of ‘Grit’ to follow and bring her father’s murder to justice. She seems to know far to much about the law and like all Cohen brother’s films, classic actors are made so ugly as to be unrecognizable, while given free reign to their eccentricies while we are bathed in language which is invigorating as it is ludicrous (unless Texas and Arkansas rangers did debate the meaning of Latin phrases while on a manhunt). Sadly, Maddie is the only female of note, and this is again, the woes of whites, but good to see this smart 14 year old female take on these males used to having their way and outsavvy them, and if need be, out grit them too.

Thursday, June 14, 2012

Victoria Island Health Authority: unchecked power, unchecked restraint

How does disagreeing with a nurse turn into a ban? When does a ban turn into a full psychological assessment? When does control become more important than care? When you are in Victoria.

Is this uncommon? Not even close, as within a week, two incidents in Victoria made national news. The first wass a 73 year old who traveled from South Africa to Victoria to see her son in the hospital found out when she ‘touched’ a nurse in order to indicate the need to be quiet (putting her finger to her lips). When the mother showed up the next day she found she was ‘banned from the hospital’. The Victoria Health Authority even says that the account given by the 73 year old mother is the same. When the mother wrote a letter of apology, Victoria Health Authority said it was not ‘heartfelt.’(http://news.nationalpost.com/2012/05/31/73-year-old-mother-banned-from-seriously-ill-sons-bedside-in-victoria-after-allegedly-tapping-nurse-on-the-head/).

The same Victoria Health Authority surprised me often by being aggressive and abusive for reasons I simply could not understand. Care or compassion seemed paramount at first, but over time, care was secondary to ‘not my inch’, ‘cover our ass’ and ‘do what I tell you.’

In December 2011, Linda was out of town doing work. We requested a nurse come to put on the Fentenyl patches. She came. We disagreed. She left without finishing putting on the patches. Part of the patches and Fentenyl coverings were found in the hallway of the building, where the VIHA nurse dropped them. This was reported by the next worker to come, as they found the articles in the hallway of the building where anyone could have come in contact with them, endangering themselves.

Linda, upon returning made a complaint to the health authority regarding the nurse sent, her behavior, her demanding that I provide her with additional medical equipment, and bullying until things were given to her, as well as her walking out.

Six months later, a few weeks ago, in relation to six questions that the Ombudsman Office wanted answering, the head of the Victoria section noted that yes, Linda had made a complaint but it had never been followed up or replied to. None of the six questions were answered (like ‘What is the name of the RN making the complaint?’ – as without the name, no ‘official’ complaint can be made through the oversight office monitoring VIHA).

But we did not know at the time that in BC with VIHA there is no complaint system, nor standards or oversights for dealing with complaints. VIHA has no requirement to act on complaints at all. And the arm of the health authority which gets the complaints most often simply gives the complaint to the person who the complaint is about. Particularily difficult as there is no protection against retaliation or reaction in the law or the complaint system. Which means each abuse often leads to more abuse. (http://focusonline.ca/?q=node/237

Soon after Linda makes the complaint, we are notified that there will be a meeting. Linda asks to be part of the ‘meeting.’ Instead we are notified that due to a complaint that I am ‘threatening’, much like the three stories in the last week from a single VIHA facility (one involved VIHA using police to handcuff the accompanying family member, the received compensation from the police AFTER a lawsuit). Why, in a small city, are there so many stories of RN’s and VIHA worker’s running rampant?

(http://www.timescolonist.com/news/Wife+wins+right+husband+hospital/6722282/story.html)

A Victoria retired cancer researched, Dr. Carol Hines, had to go to the supreme court because Victoria Island Health Authority, had involuntarily detained the husband, Prof Fred Oyster of Royal Roads, due to a brain injury. He was not able to live independently, but VIHA, within two weeks, took away all rights to visit from the spouse, nor allow her to have input into his care, or discharge him, so she took them to the Supreme court. VIHA said, “Haines had been banned because of questions from VIHA about her psychiatric health, her impact on her husband's health and the stress she placed on staff.”
The case from Dr. Hines was presented on the basis that “VIHA is making healthcare decisions without the patient's consent and against his wishes.” The Supreme Court Judge immediately gave her visitation. VIHA has her ‘escorted’ to and from him and VIHA spokesperson says, “As long as she complies with the rules, this will be okay.”
A Victoria Island Health Authority is saying they will ‘allow’ the Judge’s ruling to stand, if they choose to. I have often asked for the rules or regulations VIHA operates by in order to know what rights I have, what problems might occur. I have been told, “There is no document.”, “Nothing is in writing.”, and “it is something that you learn on the job.” But often seems to be whatever a worker wants it to be. Whether it is investigations, care plans, or saying ‘We will not come to your home’: nothing is ever given in writing.

Ironically, every worker who comes, as well as every VIHA worker sees a series of notes online which have been added and amended. These are notes about the client, me, which I am not allowed to see, but every worker, whether it is one of the ones trained for six weeks or with a 9 month certificate can see. They may be accurate, or based on complaints that workers have made which I have never been told about. For example, mine used to say: ‘Do not ever speak to the client, be aware she has a BLOG’, now part of what I can’t see says, ‘Only wash 1 spoon, 1 fork and 1 knife, and ensure that no dishes Linda uses are washed.” So a worker this week refused to wash any dishes, and simply sat for over an hour, and when I pointed out that the dishes were ‘built up’ and could only be used by me, she asked if I didn’t have someone who could have washed them the day before. My understanding of food and time means as time goes forward and I eat meals, including after a worker has been there, dishes will accumulate.

All we knew from calls to VIHA was that no health agency, RN or connected workers will come to the home, nor will they pursue any forms of care which do not require coming to the home. Palliative was supposed to cover midnight to 8 am, but when requested four times, they would not send the emergency nurse either, nor pursue any services. We would be told that the director of X program would call the next day…the call would never come. So, for the six months during which I was and am going in and out of two day light comas, and renal slowing, stopping along with kidneys failing, as I lie there, no urination, no processing out the toxins in the body (and as I don’t sweat, none come out without going to the bathroom). During this the body shuts down, going from overheating to a state of shock, unable to be warmed. I am, based on the medical evidence, palliative, and entered into the palliative program so I can die at home with care. Only the home nursing care won’t come, nor will the palliative nursing care. Even unconscious, am I ‘threatening?’

No one at Victoria Health Authority has asked what happened, beyond the RN, who walked out. And we are told she didn’t say that . Linda is told that I did not touch the nurse, I did not throw or threaten to throw or touch the nurse but that I am just ‘threatening.’ No one would explain what that means, and turn down hearing the other side of the story. From several sources, those who disagree with some Victoria Health Authority workers find themselves labeled either ‘mentally incompetent’ or ‘emotionally unstable’. And those who ask for clarification or help are ‘disruptive’ or ‘malicious’ (Ironically, the word to describe VIHA’s actions, in an assessment of my care).

With VIHA acting so….odd, it seemed, I asked, and put in writing to add to my official file that my doctor, my GP, not to give confidential medical information to the agency unless it is cleared with us, as is my choice and right. This action was due to a problem with medical confidentiality we have found with the health authority and the female RN’s who are managers. When I started to receive care, I was told that information would be shared by members of the Victoria Health Authority, but only in regards to care, and only for those working directly with me, on issues that were directly relevant.

In practice, however, this is not what has occurred. My meeting with my current RN, which occurred a few years ago, and is the only meeting with her, she did not face me, did not talk to me, and stated she had looked up records on the system, including gyno records, and notes from anesthesiologists before surgeries. She never make clear what that had to do with home care. Other incidents actual have information shared to people I have never met, are not on my care group, which becomes in essence a ‘whisper campaign’.

Several months later we were told that the Victoria Island Health Authority had a meeting, we were not invited, but my GP, who works with the health authority regularly, had, despite orders in writing, had been giving them information from visits and my complete health file. He stated when I repeated he had been not to do so that it was a ‘ridiculous request.’ A patient’s concern over medical confidentiality, after individuals start taking it and using it against them, may not be important to the doctor, but as the doctor is work for the health and confidentiality concerns of the patient, it isn’t ridiculous. Nor, do I think would the same GP want his full health records, and his GP to start give information to a person or party who might want to limit his life, livelihood or reputation, simply because his GP didn’t think it important. I have found people who find other’s concerns or rights negligible, still feel their own should be protected. (In the same way the police told us that when we assaulted it was ‘low priority’ and never took action: if assaulted themselves, they tend to view it with greater interest)

There is a difference between accessing the database of information by workers and trained RN’s to give care, and to request, or demand information from the personal files of a person’s GP, without them being notified.

At the meeting, it was ‘decided’ that I should have a full evaluation psychologically. This was told to my GP, as well as who they wanted to do it, at the local Mental Health authority or hospital. Not just Victoria Health Authority has numerous complaints of using the health authority to deem patients who are not as co-operative as they would wish ‘mentally ill’ in order to proceed as they wish without permission, but the entire province abuses this. “BC’s draconian Patients Property Act. Under this law, doctors can conduct a five-minute mental “examination,” declare people “incapable,” and then take away from them absolutely all control over every aspect of their lives—and deaths.” (http://focusonline.ca/?q=node/69 )

The problems with abuses of medication and mental health drugs or labels to control is documented in the ongoing dispute between what is legal and what is currently done as standard practice by the Victoria Health Authority by the British Columbia Ombudsperson, along with 178 recommendations, in the 2011-2012 review (seen at the ombudsman webpage, under downloads). This includes the laws passed 15 years ago, but never put into practice.

I asked my counselor if they could do an assessment, or could recommend someone as I have found assessments to often be skewed by the information given the person giving the assessment which is rarely given to the person being assessed. Also the amount of time for a ‘professional opinion’ can vary from six minutes to three days depending on who is doing the assessing. If there was something wrong, or dangerous with me, I wanted to know from an independent party (otherwise known as, “Am I paranoid doc, or are they really out to get me?”).

For me, I could not quite understand how one complaint, from one RN, to an unnamed group of other Victoria Health Authority workers could lead to them directing the care of my GP. And all this done without my being part of the process or having consent and leading to a nurse administrator telling a GP to tell a specialist what to do, what to assess and how to do it, and yet not leaving the decision to the specialist. The results were to go to the RN’s, and only they would decide what if anything would be done. And it was to be done in ten days.

As a person dependant on healthcare, it is a poor position to be in if blackmail or coercion were to occur. And as the list of standard illegal practices by Victoria Island Health Authority as noted by the ombudsman’s office seemed quite long, and advocates seemed quite silent, I was concerned.

The reason I had to have the assessment, and have it so quickly, was because VIHA felt that ‘they may not have given all the care I need.’ Puzzling, no? As I have had only three visits from a nurse for my health in four years, and no follow ups. “What care?” was the assessment. However that phrase is oft used by VIHA to validate the administration of anti-psychotics, either due to dementia, personality disorder or other reason. And this would be implemented against my will, and if Linda did not comply, they would remove Linda as guardian. And then, all the complaints and blogs from 715 Vancouver street would stop.

That hardly seems realistic right? Except that currently Victoria at 52%+ has the highest percentage of people under care taking anti-psychotics in all of North America, and twice that of the average the other provinces of B.C. Interviewed RN’s, LPN’s and other caregivers actually thought the percentage was higher, closer to 80%. “Antipsychotics are a regular part of the medication routine,” says one LPN. “It’s almost an admission requirement.”
VIHA’s (representative doctor) Bailey is cautious. “It would be a fair statement to say that we would like to see fewer people on them,” he says. “But when you look at many [situations in which antipsychotics are being given] they may well, at least in the short term, be justifiable. In fact, it is my guess that the majority are.” 52% justifiable? Yikes. (http://focusonline.ca/?q=node/237)

However, anti-psychotics cause heart problems, particularly in the elderly, and over 100 will die in Victoria in the next six months according to Award Winning writer for Focus, due to this ‘solution’ to VIHA care problems. “..none of the long-term care staff I spoke to were even aware that Health Canada had issued warnings against seniors taking antipsychotics.”

So how can they keep prescribing it when a chemical restraint is supposed to be illegal? Because “there’s a gaping loophole. The policy defines a chemical restraint as any drug used to tranquillize a person’s behaviour and that “is not needed to treat medical or psychiatric symptoms.” Dementia-related behaviours, of course, are virtually always considered to be both medical and psychiatric symptoms...If [an antipsychotic] was prescribed as part of a regular care plan,” confirms Peters, VIHA’s Long Term Care contract manager, “it may not be considered to be a restraint.”” (http://focusonline.ca/?q=node/237)

Scared yet? I was.

The report has been made. It says that I am not a threat. I was to assessed for ‘Borderline Personality Disorder.’ I don’t have that. I was to be assessed for PTSD. The only PTSD which they saw occurring was due to the type of ‘powerless and exploited’ situations that I was being put in by Victoria Health Authority. The report is in, but I still have no medical home care.

Who guards these 'guardians' of the vulnerable.

Wednesday, June 06, 2012

The Hell Hill of Goddess Run: Not Dead Yet

I wanted to put up a picture of the ‘Hell Hill’ that started the Goddess run, or that that put about 10 minutes between the back of the runners/walkers and me. The long sloping hill turned steep and when it seemed it was all over and I had slid to the back of the pack, but still definitely in the 5K race we turned the corner and, whammo, hell hill!

This was Sunday’s Goddess Run, which I signed up and paid for as a gift to Linda back when she was in the Hospital. Promising champagne (never saw it), chocolates, live music and massages in an all women’s 5K, 10K and half marathon, it was something for Linda to look forward to. Plus, by paying the same fees as the Times Colonist race, I got to donate $20 toward the Victoria Women’s Sexual Assault Center. The Center not only does counselling but supports women who have been sexually assaulted with a person there, supporting them from the hospital to the police interview right through the trial.
I don’t know why Langford, a suburb of Victoria is trying to replicate San Francisco, or maybe developing land left because it was part of the side of a steep mountain is the other reason. Either way, this hill is so steep that all I can do is push, then grab the top of the wheel and hold myself locked as the gravity of the slope tries to pull me backward down the hill. I get four or five inches per push. My shoulders are screaming in pain. My left thumb wouldn’t move at all for two days, and my right hand still can’t pick up objects as they drop from inability to grip.

 The all female race reminds me of the breast cancer runs in Cardiff Wales.  Everything from the serious to those in tutu's.   We start all a gaggle, seem to be far more than the limited number of 350.  Each race section has a limit to the numbers, which is why I got in with the last 18 people, booking it after talking to Linda in hospital back in April.

For the runners the uphill was just a hard but odd start, then on to the flat sections, for me it was 10 minutes of hell with construction workers staring. They were up for the Goddess race of all females: mothers with daughters, friends, and a team of women in pink tops which read “Fueled by Chocolate”. The construction workers were working on Sunday to make the slopes in gravel on the NEXT development project (forbid we should have anything green or natural on this island). What goes up must come down, and just as steep. With only hands and gloves for brakes, I found that even when I locked my hands and the wheels, the wheelchair’s locked wheels were sliding down as fast or faster than a walking pace.

Then there were the cars and trucks coming straight at me, while I was going up hill, and coming down with very minimal control and trying to just keep my speed as low as possible. Though we told them two months ago, the race organizers did not inform or act to acknowledge the two wheelchair racers, Linda in her power chair and me in the manual. So the wheelchairs weren’t called to go early, and the people who were to mark the ‘end’ of the race, as the 5K went last, so the streets were opened after the last of the 5K participants passed, followed the runners, opening up traffic to drive straight at us. The worse, when going down that hill, out of control, were the cars and trucks going across the streets and there was no way for me to stop until I reached the bottom.

You can see, here on the Goose trail, once the Hell Hill was over how quickly the Edema responded to the stress as take a look at my shoulders here compared to the ones going up the hill. My body, already stressed with the disease in final stage, was breaking down cells for the water and I was swelling.

It was hard, and I went for a nap at 8:45 pm on Sunday and didn’t wake up until mid Tuesday. The good news is that my kidneys were still working, though they turned off for a while, or went into ‘holding mode’ but when I did make it to the bathroom, the dark orange pee said that toxins were leaving the building. I though of trying to take a picture but doubted I could make it to my camera and back.

But do I regret? No way.  For this one hour, I LIVE. To challenge myself, to challenge the idea of what someone in final stages of dying can do, this is who I am. Or at least would want to be, not just lying in the bed, watching systems fail, like lights going out in a house, which itself seems to be covered more and more in a foggy mist.

With so many women and young girls around I didn’t want to swear, but they put three hills as our start! When the going got tough Linda could hear me saying, “NDY! N.D.Y.! N.D.Y.!” There is so little in my life and my body that I can control now, so to have it reduced to one horrific hill, and five inches at a time. I can’t stop the fact that whether it is five or twenty five weeks, I can’t, despite what some may think, keep going forever. It is almost over. And the pain just keeps getting worse. But having been removed from hospice and hounded by VIHA because a broke a stereotype that palliative people would want to live longer, would go to the Y, would do more than just ‘accept and wait.’ And thus I was to be broken, or put in a hinterland where the medical tests show I am end stage, but both VIHA manager and GP seem outraged and angry that I should go to a film, or the Y, and perhaps, evidence aside, I am making it up, or need no help at all. ‘Bring in the Shrink!’

All this, with financial, job woes, were reduced to four to five inches and if I had the will power to push once more.   "Go Elizabeth" someone called out earlier. 
With our names in bold, any and all spectator can urge us on with the added power of our name.  But here, on hell hill, it is just Linda and I.   And for Linda, it looks far worse than it did on the map.  After reviewing the options it comes down to this: Do or quit.  The same decision to be made several hundred times for just that one hill. 

Several times a week I go to sleep and then can't wake up, can drink water, can move my head or even cry.  I can’t wake up and it terrifies me, as I sleep on, like a ship sailing into a fog, drifting through dangers unknown, with fevers, and the muscles breaking down as my food intake decreases while the edema is so fast it transforms my body in a half hour. Meanwhile, if I want to pay the cost, to risk the time I have, simply to do what I haven’t done in a couple years, and push myself up a hill, finish that 5K. Once more into the fray…