Sunday, October 30, 2011

Live large, live wild, be known for your word

Teenage Paparazzo, the documentary which starts with a 13 year old doing a 75 shot blinding flash on Adrian Grenier (of Entourage) who wanted to know about Austin and the world of Paparazzo. The word is from the 1960’s film La Dolca Vita which is about a lowlife camera fiend and referred to the hounds of photographers as a mosquito (though it is to mean, ‘flies around feces’). I recommend the documentary, but in it they talk about paraconnections (completely one directional relationships) and how life has changed from people being known for who they are and what they do and that has been stolen and given to a very few: the famous.

It posits that we take pictures and follow celebs in a way to tell our own story, that we love person X and care about them and that is what connects us to others. But also that we appropriate other’s lives to tell our own story, in a world where our word, our morality is far less important than Paris Hilton going to InandOut Burgers.

Beyond not knowing who is Paris Hilton (can you leave the answer, please) the documentary made me question the nature of blogs, ‘social networking’ and transparency, but also the idea of ‘worth’ Sadly, Paris Hilton is shown a lot: genuinely the girl who is both clueless and clued in. She must be the center of attention and will screw the teacher for a good grade and wonder, honestly, why people think that is bad. She likes paparazzi and when Adrian is telling her the Myth of Narcissus, she doesn’t know what the word ‘myth’ means and tries to bluff it by wondering out loud if this was a real boy who had drowned with the hint that maybe she should be doing a benefit or something for him.

When did an interest become more important than the nature of the worth of the individual: choices, morals, and striving, which has either stagnated or continued to strive. To me, the ability to try something new and look stupid to challenge the self is worth far more than the connection of a hobby. Yes it is nice that people can exchange knitting info, but I want more. I want a person. To me, the screen is no less a mask than skin by which interchanges and actions will tell the nature of the person. Yes, the face to face contact is good, but I don’t want to put someone who will never have a connection of the heart above someone who is a kindred soul, however much that sounds like I stepped out of Anne of Green Gables.

When I applied to work at the Cinema, I was turned down. Then hired out of the process by a fast track female manager who said that if I didn’t have all the things the company wanted in ideals, none of the applicants did. The problem is that doctoral students didn’t work 11 to 14 hour shifts cleaning up rubbish, or scooping popcorn, and not for minimum wage: so decided the class mindset of Viacom.

I live in service and if I have my way, I will die in service. There can never be dishonor in the service of others, in making people have a better, a happier life. Whether that is in caregiving, teaching, tutoring, writing, retail, scooping popcorn and cleaning popcorn machines, or serving as Prime Minister: if done out of a motivation for others, it will burn you out perhaps, but it is noble.

I believe the same is true for learning, for genuine research, though to write up those findings is an added benefit. I realized today that women, who have learned by need to take jobs without regard of personal ego, and adapted to the markets, adapted to the changes, they will now inherit the future. Perhaps some men will, but after millenium of male expectation, I wonder if they will have the flexibility to see beyond the self, the job, the status. Oh, I have run into the stogy matriarchy too, health care abounds with them, but the future is female. Females, in my experience, make better EMT’s, Police, Teachers, Principals, and Directors. The last two fortune 500 reports showed that those which had a critical point number of females in the board room grew, in spite of industry or depression, while those male dominated sank. For me, it is because of the ability to listen, to help the person help themselves, or assist them most effectively by acknowledging them as an equal person first. Yes, it is a simplification, but talking to a Police Officer Roy O’Brien (badge number 8, Victoria PD) who, walked in already having answers (put me in a home) advised me to be ‘sweeter’ and I wouldn’t have problems with temperature in the Jubilee Hospital (I need it dropped from 78 to 65, and if I only SMILED more…).

After answering all his questions about the disease I asked what he thought he would feel if he was diagnosed with a 2 year extremely painful terminal disease? At his silence I asked, ‘And if I was highly contagious?’ (meaning airbourne). He told me that he ‘risked his life every day that way dealing with people with such contagious diseases.’ Which. ‘HIV.’ He told me. As bad off as I was, I actually laughed, because not AIDS, but HIV as a two year death sentence in North America. Current studies show that particularly for Canadians who DO have the access to meds, those with HIV are more likely to die from non HIV related conditions – aka, ‘Normal Life Span’. So please send all Condoms and pamphlets to Police Officer O’Brien, who is working off 1980’s info (this was after he assured me he knew more about medicine than I coming from a ‘medical family’), and must do some very interesting things on his call outs (use condoms dude!).

Second example was TB, which we rank 4th from last, the US second to last in the world, His answers to questions were…unempathetic, to put it kindly.

He may answer the calls in the community but does he serve. Does he lay down his life in service? I asked him what if he knew a call would involve his death. He replied that as long as he took lots with him, that was how it was.

We live to serve. And to serve is to put the other best interests before mine own (albeit, any lasting relationship must be a 100% relationship, with both putting in as much as possible, not weighing 50/50). If I cannot live up to that credo, then I need to change what I do, and how I do it.

While I have tried to be transparent, I haven’t wanted this to be a ‘medical’ blog, or a ‘film review’ blog, or an ‘essay blog’, but a reflection of Elizabeth McClung. Perhaps that is useful, as I can honestly say it is not primarily ‘entertaining reading’ now. And yet, as no one seems to talk about the sinking down of health, where having a toilet bowl full of blood is normal, and isn’t the problem of the day, or even in the top five, there is a value in it. Because there seems to be a total forgetting that in Health and Wellness there is ‘unwell’ which comes to us all. I wish I had been able to know how long I would live, if I fought for it, as I am far beyond what I thought killed.

Perhaps if life is crisper, with sharpness because of the awareness of your own mortality then I’ve done the job today. I suffer because I dream, because an expert or specialist telling me what is ‘impossible’ is still only a mortal with an opinion. Challenge the greatest limitation you have: what you will allow to imagine. Do that, then follow through and let me know. I’m not saying you can’t do it, I’m saying you can, or if you fail, then fail from trying with everything you have, wiping out all doubt inside. I fail every day. And I try every day.

I was terrified that death was a test, that is rips away all the masks I had, that it would expose my inner core and leave me helpless, and meat, waiting upon another’s judgement.

And I was right.

But it is more. It is ugly often, as the pain, the shit, sweat and piss combine to reduce you to something writhing on the floor. The loss of function can bring the desperation of the truly helpless, and the grinding pain can tear away the laughter, while pride is the first and last to go. I can honestly think of no worse way to die than this, and I know most diseases. I wish for cancer. I read about a person confronting their Huntingtons’, looking at a person, in rigor tension, only able to moan, and thought, ‘Better to be dead, for if they are brain dead, they are already dead, and if not brain dead then it is worse still.’

NEVER, EVER take away the worth of a life in your mind because you decided in a not so bad state that the person would better off dead. I know, I hear that sentiment about me, and people like me almost every day. The people who think that have a greater rot in their mind than I; for they cannot accept limited wonder, or possibilities.

I have ‘good hours’ among a four or five days. But I still have good hours. Some of those on the backs of the care and consideration of Linda. Imagine more.

I did not survive the annual 106-107 degree fevers to die because someone else, over a cuppa, too caught up in ego to clean up a spill in a restaurant, much less clean a toilet, decides I should. I almost died in Austria, Greece, atop a mountain in North Carolina, at the end of a gun in Tennessee, and at the base of a Tornado in Virginia, on a slab of concrete fevered in Winnipeg, and driving 120 in the snow at 3:00 am in Sask. I fell down a cliff in Ontario. I’ve been dumped in water full of ice cubes more times than I can recall. I led a team off a mountain-top that was too extreme for the RAF, once Linda finished with the body. The wind on the ridge picked up two people off their feet, so we had to go in groups of three, first on, last off – always. In Southern UK I told a 11 kid to jump, and I’d catch him. He jumped left, and I caught, him, and he rode my body down, until my body crashing through the trees came to a stop. In Munich, I got Linda and I out of being crushed, like a dozen others, watching limp bodies passed above the crowd to the barricades. I survived in the middle of a war, fevered, without heat, in the snow. I squatted in Greece, watching one after another die or disappear into the underworld. Skinheads in Prague, and ‘lads’ setting friends on fire, another couple’s flat set on fire. Faced the guns at the Brandenburg Gates, and the machine guns later in Hungary. Got thrown out of the Vatican city. Skiied atop the alps in a Blizzard whiteout, in jeans. I would say I was young and stupid, except I never seemed to get smarter. I lived a life. I was in Belfast during daytime bombings, and returned when we had to commute into town due to a purge, kneecapping all gays in Belfast.

There is always a time, like waking up on a train to find the room empty and the floor full of blood, when you just do what needs to be done, or give up. And I don’t give up. Too many knifings. Or when the Judo champion with you says, “My God, do you realize how they (several hundred) are looking at you. They are ALL looking at you.” (meaning: there is a high likelihood of violence)

“Yeah” (but when chased through tesco’s by drunk lads, and report to security only to have the security guy join them, I am not unaware of the dangers of being openly queer).

Out jogging, to have drunk lads in a red convertible come round twice, and then, follow at jogging speed for a block before you can hear them decide to ‘do it’ and pull ahead and stop, the four guys climbing out of the car.

A guess one tip from my life would be: avoid taking a hitch-hike ride from someone who has handcuffs on the dashboard.

It is not all of a life, it is just living. It is why when we got lost looking for Raccoon’s, I tried every single exit. Because it is about surviving, and I am not leaving now.

Saturday, October 29, 2011

The Today's (also blog award nomination deadline)

Huddled around the coin phone in the basement of the Empress Hotel, listening to Linda’s voice about her roommates recent extreme PMS antics: this is how it was 20 years ago. The Empress’ Winter garden is gone as is the Inuit art, but the phones are still there. Walking home to sleep on the floor of an unfurnished or heated squat past the wall of St. Anne’s Academy, off to write letters and skip eating that day for an extra three minutes. Twenty years pass in hours, and days, not years.

Here I am today less than 3 streets from that squat and the concrete floor, ikea frame and banana boxes which made up ‘our’ bed when I flew to Manitoba and we drove through night at times, in the USA, to Victoria. And stopped along the way in unnamed town at 3:00 am to play on the swing set of a local school. We left weaving and dropped a tire off the road into the gravel, and wondered if it would ever come up, as we heard the gravel, like shotgun blasts, hitting the top of the inside of the engine hood. And then, when the fan belt broke over 1,400 miles later and just looked at each other and back in innocence to the mechanic who opened up the front hood and found gravel atop the fan cover, atop the battery, atop about everything conceivable.

I pledged then that I would be with her ‘forever’. And it is easy to believe in an idea that in some distant future that we would somehow manage to live on and on until deciding to go. We thought it was our choice, to die or not.

Things were going to be different for us than every other couple before us. Why wouldn’t we think that?

Until the end of the ‘things to come’ arrived for me: unwanted, unexpected, mundane after all.

Linda was there every day, in different ways, some had her leaving without moving out but in the remissions or the downturns, when others walked, she stayed. When the doctors left, when siblings never showed and parents peered in and ‘tut tut’ before passing on she stayed. We both stayed, two lives which seemed more and more out of control than united.

Now, people seem to want to take choices away from us. We were too young, too foolish, or whatever reason we had for not being able to be together (likely our inexperience with car mechanics). And now, Linda must be ‘saved’ from grieving, from seeing, she must be sheltered. And I must ‘learn to let go’, whatever that is to mean. The people who ‘help’ us the most do so over objections and do not want, even in jest, a modicum of our life.

I think we should be able to choose: that Linda should be able to choose like before, hunched over a phone, deciding whether or not she wants the minutes of conversation or just listening to each other breathe. The moon I see is the same moon she sees. We are separated by the experience of a cruel, hideous disease in a callous world, one which labels Health only in terms of ‘Wellness’. But seeing the same moon, we share in those hours, and days where so little else is connected. We create our own priorities, and accept or adapt our limitations. On the good days, our priorities synch, but those days she forgets I am like old stretched lace: fragile with beauty or ripped and torn depending on decisions. This is what makes our today’s.

That I blog at all is an execution of extreme focus and determination. I have not enough sustenance for over a month to sustain the body, and so I have lost control of temperature regulation. It is seven days of constant goosebumps and the agony of frostbite and the weakness of being unable to eat. And so, I write, when it is too hard to lift a drink, or try to eat the several bowls of a breakfast. And I weaken. And we all pretend otherwise, in every action or deed, I can get someone to get me a drink, I can’t ask anyone to care enough about me to assist me to drink, or eat. And so, without food, in a few hours of sleep, I am expected recovered, and so I slow down, realizing that my emotional support assists my physical well being. I can not be strong any longer, and need that glow knowing I am someone’s ‘special one.’

I got the body to the Terry Fox 5K and after that, it has been waiting, and weakening.

On the 31st the nominations for the Canadian blog awards close. The link to nominate is here. I am not sure how to use it, but Health, Personal, or LGBTQI would be a good choice. It is only for Canadians but that includes GirlwithCane, D Emerson Evans for personal and art, perhaps, and Steampunk Scholar under, um, Fucking Cool! (he just listed the anthology steampunk theme for next year, so get writing). I am sure I missed many others. This doesn’t determine who wins but who gets to at least PLAY. And mixes in new people reading new things, which is a good thing, ne?

Because we are Canadian and need four committees to draw a straight line, there is the Canadian Weblog Awards which again, close nominations on the 31st of October. Please submit your favorite Canadian blogs HERE. This group likes to RATE the blog, much like a teacher, on creative design and spelling. They only HAVE a ‘Health and Wellness’ link. Well, ‘almost dead’ is an ASPECT of wellness (called ‘unwell’ usually). I think if they had a ‘Palliative section, I would clean up. Because I can choose to post before passing out (which does happen now MANY times a day: maybe 10-40 times a day, with a few seizures, and 2 hours out of commission), or I can worry about spelling, and post twice a month.

So thanks for anyone who nominates new and interesting Canadian blogs. I spent some time looking at Wedding Photographers in my local city Victoria, as it is interesting to see the usual spots all tricked out in photos until unrecognizable. Also seeing the start to so many stories was of interest.

I don’t know the end to my story, but I know that I will keep, like Dr. hell, reporting (he had care problems too, repeatedly, with his ALS).

Friday, October 28, 2011

Oh where did the week go? Boys playing princess & girls playing president

Sorry I didn’t blog the last few days. I like to blog 3 times a week but between mid day on Wednesday until now I simply was passed out, gone, overheated, heart unstable, unable to generate body heat, in pain, and other not so pleasant things.

I think anytime you WANT to die and don’t, and are genuinely unhappy about that, you are not in a very good physical and mental place.

Now that I am up again, and sore and realizing all the things that I had ‘planned’ to do, it seems a bit overwhelming. But I think if I just do what I do, and then do what comes next, it won’t be that bad.

I want to do a post about ‘sweet boys’ and the allure of being a princess (hint, satin and velvet not only is shiny and pretty, they also feel softer and more enjoyable than say….those jeans and overalls boys are usually stuck in (Quote from 'men in dresses')"The first time I became aware of female clothing and of its appeal, was a small child when I was out to bed as a toddler in Ladies Knickers, because I had run out of night wear, having a fever with German Measles, all my clothes had become damp and were in the wash. I can remember even now how I wished I could wear the same clothes the next night... without any idea why! But I can remember after all these years the yearning that a small child felt to wear silk knickers. This could hardly be a sexual need or kick, not as a little toddler!" – babies head for the shiny objects, then some to most guy babies try to use object to bash another object, sibling, parent or passer-by – while others just like the shiny objects) (boy by the way).
As for girls, well, those who want to dress like guys usually can the rest of the year, so usually halloween is about ‘dressing UP’ –aka, experimenting with sexuality (if you are bombarded with ‘you ARE sex appeal’ 40+ times a day in society, then what better time to experiment with that than halloween).

I guess the whole idea of having the persona of a career, a fantasy, a curiosity without having to do the actual work is interesting – maybe that explains the YMCA gay guys? But these days, how many careers are so specialized to be visibly identified?

I think If I was to be able to dress up, I would go as Abe Lincoln (early career, without gigantic wart)who seemed to grasp both human nature and the internet age 150 years before it arrived: "I believe it is an established maxim in morals that he who makes an assertion without knowing whether it is true or false, is guilty of falsehood; and the accidental truth of the assertion, does not justify or excuse him." Then going as A. Lincoln, I would memorize a whole host of sayings,"I expect to maintain this contest until successful, or till I die, or am conquered", since Abe used to have a knack of insulting people without getting beaten up (maybe being over 6 foot helped) "He can compress the most words into the smallest idea of any man I know." by getting people to laugh at him or themselves or at least take long in figuring out what he is saying, (on a written idea) "..as thin as the homeopathic soup that was made by boiling the shadow of a pigeon that had been starved to death."
The one quote I remember most about Lincoln is from his Presidency, when accused of graft (one of the greatest political bribers until Bush), he said that of course he was, as he so many enemies (in government) and had to simply trust his friends. This idea showed above all else a genuis who holds himself and his friends to morals, and those craven to greed, in order for a better future (or in this case a future country at all)

Plus, I just saw the Criteron Collection film of Young Abraham Lincoln doing a court case by John Ford and I’ve always liked that he was a president which had to make difficult decisions, but was carried by an earnest desire for unity and to do what was good for all. I wonder how many girls end up going to costume parties as US presidents? Probably more than I imagine.

Monday, October 24, 2011

Is Aloha English, and Good Wife vs. Breaking Bad, a three DVD set review

In the plus column for Hawaii 5-0 is the high level of movie and TV stars. It isn’t just the main cast, which are all seasoned and well known up and comers, but every single main character and extra is an A list hollywood ‘name’. The Doctor in charge of the morgue, who has only shown up once, is Hiro from Heroes. The main character from the 8th episode is the lead, Adam Beach from the film Windtalkers who co-starred with Nicolas Cage, with a couple walk-in from Hill Street Blues and other series.

The island of Oaho and Waikiki are beautiful, and the interaction between the two main characters, Alex O’Laughin as Steve and Scott Caan as ‘Danno’ clicks almost instantly – Alex is from Criminal Minds, and other TV and films, while Scott is from Ocean’s 11, Entourage TV and Gone in 60 seconds to name a few. And the production is high value with only a few clunker lines, as they haze the newbie to the islands ‘Danno’ and introduce the Island culture, which is that there are Hawaiians, and there are Haole, or white foreigners. Considering that President McKinley illegally annexed Hawaii into Territory status in 1898 and was content to use it as a base but not give it official US status (much like other US territories). Even the attack on Pearl Harbour didn’t make Hawaii a state. Only when the democratic revolution took over the legislature, and petitioned repeatedly did Hawaii gain some benefits from being annexed. On the big island, where Hilo is along with the tropical paradise Captain Cook talks about (and the valley of the King, along with the Queen’s land), Japanese workers in the American Plantations tried to create a union in 1898-1910 and were hung from street lamps. Japan knew the island well, being 1/5 of the population and having worked there for five to six generations before the war.

On the down side of Hawaii 5-O is they NEVER leave the island of Oaho, so though there are eight islands, it should be called, Oaho 5-0. You get scenes from the Big Island, but the one chase scene on ‘another island’ where a evil killer has fled on a cruise ship, they end up driving at on the most famous places in Oaho: Nuannu Pali, where King Kamehameha I drove the last forces off a 1,000 foot cliff, to unite Hawaii. The product placement (at least two car companies, an airline, drinks and I-pods – I learned how to do a lot of things with them, as they are always instructing ‘Danno’ on how to use one – apparently good I-pod use is a Hawaiian heritage). The subtitles however never end up translating the Hawaiian, including Haole (which means foreigner and is used at least once an episode to refer to Danno, as ‘White Haole’) and sadly, Aloha, which means ‘hello’ and ‘goodbye’. This is translated as ‘They speak Hawaiian’ on the subtitles. I thought that everyone knew what Ahola meant and it was one of those words, like the French call ‘McEnglish’ which invade the language through common usage. At least when a character says, “I’m off to catch some breaking waves” they don’t say, “Hawaiian spoken” though the ‘surfing lifestyle’ from which the skateboarding life arouse (see the documentary Dogtown and Z-Boys (Special Edition)voiced by Sean Penn, with the start of what we know as modern Sk-8 life – about $5 and an amazing film, they went on to make Riding Giants (Special Edition)about Giant Wave surfing, including a 100 foot wave surf, very serious and intense stuff).

The TV show Hawaii 5-0 sadly falls apart at the end, with a few episodes making no sense or time context at all. The premise is that the head is a Navy Seal, and has authority to operate outside the law. They show this as picking up a small time hood, he threatens prostitution for the daughter, sending the whole family to Rwanda and having the 7 year old join the Hutu milita. Since the 800,000 death genocide over 100 days was orchestrated by the US with Canada as a front, in order to ensure that refugees and a UN camp did not open up and thus impede the desired elimination of the Congolese government forces. To make sure that a ‘free zone’ did not open up and stability with US backing of the Congo ensured. Canada, known for being even handed was called and asked to be on the ground, but to not actually do anything. As the role of the person going ‘everything is fine’ while the Massacre in Rwanda unfolded, Canada eventually could not stomach what they had done, and the commander as well as the government released all the papers involved (the Rwandian government is still asking for several Americans for the war crimes tribunal), and so many documentaries have been made that falls almost in ‘common knowledge’ So, I thought, an odd choice for threats, but then, Hawaii 5-0 has a few ‘geez, did they just say that?’ moments, where I wondered if the public watching, so used to the idea of the US as the good guys would allow any amount of torture, killing or threats if the ‘good guys’ did it?

Still, I found it mostly entertaining and far better than Breaking Bad season 3. Breaking Bad starts with us sympathetic for Walter, a teacher who, though a genius, has been passed over his whole life, and ends up with cancer. Wanting only to make $173,000 to cover medical and the costs of raising the kids and putting them through college when he is dead, Walter is sympathetic. But as things progress the situational morality of ‘I had to do it’, ‘I was just following orders’, etc takes over until Walter is a bad guy who does bad things with other bad guys. There is enough of that around that I don’t need to pay to find out that drug dealing causes death and unhappiness. Season three, where Walter has the lowest morality, steers clear of the dirty end of meth, like earlier seasons where peoples heads are crushed slowly in front of their children for refusing to share a hit. The series somehow tries to argue that this is about ‘money and survival’. I know it might be popular but I could not find anyone except maybe Walter’s son who I even liked, and I need to root for SOMEONE when I watch a show. So if you want to view it as sort of modern day pit fighting, then maybe this series is for you. I was disappointed that this series ended up going down such a worn and tired road.

Morality seems the words of this year, as The Good Wife: The Second Seasonwins the Emmy, though the title turns out to be more of the show title than a character description. It is well written and has the plotting of a 15th century Italian city and nobility, which is how the lawyers seem to act. Sadly, the lesbian of season one disappears into a amoral bisexual (cliché’, why yes!). BUT, there is a guest appearance of Michael J. Fox, as a lawyer who is openly disabled and milks it – the way he makes the entire opposing lawyers, judge and even jury squirm with the inability to even know what to call it…his ‘affliction’, ‘handicap’, ‘crippled’? His use of Parkinson’s (which Michael Fox actually has had for almost 20 years) made me laugh out loud the whole time, particularly as he uses pouring a glass of water from a large pitcher into a open glass as tense as watching a high wire act, totally distracting the jury, judge, and even the expert witness whose testimony is supposed to be destroying his case. He returns a few times, and there is a strong hint he will return in season 3 of Good Wife. The idea of a person with a disability getting literally a million dollars a day to make people uncomfortable is a nice fantasy, as I can see I am drastically undercharging when I make those around me itchy with their desire to point out my disabilities, the need to distance themselves warring with the politically correct voice in their head. Still, if you know a law firm that needs me, I am will to make people extremely uncomfortable due to disability for $1,000 a day (I mean, who wouldn’t want to!).

Good or Bad, The The Good Wife: The Second Seasonis the keeper of the three, though for brainless action and a preview vacation, Hawaii 5-0 isn’t bad either. If you love Breaking Bad, I am sure you will get it regardless of what I say. I am that girl in the class who gets physically ill at people doing bad things, or lying and yes, my face always gives me away (something they must train out of you in law school). But I am left with the puzzler, do people really not know what Aloha means? Does it need to be translated as ‘speaking Hawaiian’? I thought, like how latin, french, anglo-saxon, and everything else mashed into English, a little Hawaiian had slipped in as well. Though, ‘bro’ (like, “Hey my Haole bro!” or “Right on bro”) might be used a LOT more in Hawaii, that isn’t Hawaiian. Sorry to all those 15 year old boys who thought they had suddenly become bilingual.

Thursday, October 20, 2011

Doctor Phobia: Do I have PTSD, Panic Attacks, or just an acquired phobia to MD's?

I can’t sleep the night before a doctor’s appointment. Not anymore. And I get snarky, twitchy, and scared almost a week before a specialists appointment. On the day I don't want to leave the bed, don't want to dress or get ready for the trip.
When I get to the medical office, I try to calm down with listening to music but my mouth is dry, my heart is racing, and I feel like it is bursting through my chest. I feel like there are fingers ripping open my rib cage, and have a hard time getting a breath. The more I try to focus, the worse those feelings get. I know that I am having a panic attack, and yet I try to say nothing to anyone, for the same reason I can’t sleep the night before….

Because I know it would be used against me.

I have nightmares about missing finals and how I can’t find my classroom but I wonder how much of that is about the OTHER type of tests: medical tests. Like a final, I will have a short period of time, sometimes only a minute or two in which I will be given a question by the doctor to which I need to have the perfect answer. And I never seem to get it right.

“I am tired of wasting my time.” My GP says, and walks out. “Stupid” is the most common phrase he uses for me. He tells me my questions are ‘time wasters’, ‘Stupid’, ‘Idiotic’ and yet, he is one of the better GP’s I have had. The closest he has come to saying something nice was one question he said, “Now THAT question was a GOOD question.” (Gee, what would that make every other question I have asked him?). Linda said outside, “Did you notice how much he like you.” No. I feel too much like throwing up after a doctors appointment from the fear, and the adrenaline in my veins to feel anything other than, “Please let me never have to do that again!”

I ask doctors questions because I don’t know why things happen. When the side of my colon fell over my anus blocking it and he put me on a softener and other products, I asked, “Will the colon fix itself, and why did that happen?” This, I was told, was a stupid question. Linda thought he probably didn’t know the answer.

I’ve noticed that the more the doctor doesn’t know the answer, the more they attack me. And with my disease, they don’t know a lot of answers. Ergo, I am always the problem.

To me, if my anus is blocked, this is considered BAD. I want to know why, so I don’t have to go to a doctor again, and to get an X-ray again for a blocked anus. I don’t want to tell the X-ray tech, who is cute and looks like California, that I am here to check for anus blockage and constipation. It kills the romance fast. There aren’t a lot of anus jokes which can be used as pick up lines (though MANY men have tried, trust me).

I have been told that I am lying, that I am delusional, that I am suffering from trauma from my childhood, that because I take medicine for depression I used to have, I am making this all up. I have been told that what I say isn’t possible, and the most common reaction of a doctor seems to be to ask my partner, “Is she lying?” No.

I have been told that I want the attention, or that I subconsciously want the attention and that it isn’t my fault, but I need to go to a mental asylum. Or that it is my fault. Or that they need to run the blood tests again.

I have been told that my blood tests must be wrong. The MRI must be wrong. That the conduction test must be wrong. That the CT must be wrong. Then I am told that the notation, “Indication of an adrenal tumor” on the blood test isn’t relevant. That the 40% of the blood test which showed up with star by it and bold with ‘GP, address then or refer to specialist’ note on it, isn’t important. I’ve been told that I haven’t had an infarction because the blood test shows there is no damage to muscle. I have been told that the result showing the massive damage to muscle is likely from me bumping into a table. When the damage increases and is in bold and ‘urgent’, I have been told that it ‘isn’t important’. I have been told that I am at fault because I let my B-12 get too low. I have been told that my B-12 is irrelevant. That anemia isn’t relevant. I have been told that if I had fatigue, how could I be in the doctors office.

I have been told that I look too good to be sick. I look too animated to be in pain. I have been told that purple fingers come from florescent lights, not lack of oxygen. I have been told that even though my nerves are dying, and have an auto-immune disease, I am probably ‘faking’ the level of my autoimmune disease, though no one knows WHAT disease it is yet.

Jazz at Fighting the Fibro visited a pain doctor. He treated her like shit. She still managed to make sane, logical arguements. My pain doctor said, "Hmmm, you don't exercise." After finding out I did he said, "You are too complex to treat." I didn't have anyone even try to treat my pain for the next 2.5 years.

I've had a male doctor tell me I'm not masturbating correctly (no, I'm not kidding). And then want to follow up about it. I always thought, "If I orgasm, and don't use any gardening tools, then that's good." No, not good enough.

I have nightmares about doctors because doctors hurt me. They hurt me emotionally, and psychologically. They hurt me physically, they grab me, they leave bruises on me. The idea that I go to a respite where any doctor can walk in at any time and do anything to me is beyond terror. Having a room where I can’t lock the door with doctors around terrifies me.
Several people told me about how they developed needle phobia after a bad incident with a needle (one where the nurses tried 16 times without success). I have had dozens and dozens of doctors conduct, supervise, oversee, evaluate and manipulate both me and the results of the hundreds of tests I have had. One doctor told me that ‘I don’t need tests to tell you have pseudo seizures, regardless of what the ER neurologist said, and I don’t treat pseudo seizures. This will probably be the last time you see me.’ He sent me for a single 1 hour black and white flash test, which produced no seizures. I wasn’t scheduled back, and ended up getting meds from the seizure specialist in the ER.

I am fatigued of crying from the abuse of the white coats. I am tired of the two days of nightmares BEFORE I go, and the three days of nightmares AFTER I go.

I think I have Post Traumatic Stress from the trauma of the doctors who have often judged me and found me wanting even before I saw them. “X talked to me, when they heard you were seeing me. So, I know ALL about YOU.” Once specialist told me at the start of the meeting. This wasn’t even the man who hated me, told me so, but added in all seriousness that if anyone wanted to do anything to my heart, he really wanted to do the cutting.

Like a gal who seems to pick the 'hit me' type of boyfriends, I have started many doctor relationships with good hopes. But then the 'Do it and shut up' soon starts. And after that it is 'Do it or else' In our Province you can go the CPS, and see how many doctors in your neighborhood just got requirements to have a female in the room due to the multiple number of rapes or sexual abuses. No, the doctor doesn't go to jail. And it has to be more than just one, but the college won't tell me the magic number of cases before they go from being published with a line about 'complaints of abuse' in a doctor only publication until they are listed on this board.

One doctor told me they wouldn’t touch me at ALL, because I made him uncomfortable. Another doctor wanted to know why I got into the sex trade. Seriously. His apology was, "Oh, or was it exotic dancer." A DIFFERENT doctor sent me for monthly HIV tests. One doctor refused to treat me anymore unless I consented to a double mastectomy. Could I do that at a sandwich shop? Could I do that to the doctor’s family? Ask his daughter when she chose to be in an escort service? Or would that be out of line? One doctor said they wouldn’t see me in their office, but they would consent to examine me in the parking lot.

What is the cure for Doctor Phobia? And am I the only one who has it?

Monday, October 17, 2011

16 hours: Hypothermia to climbing Moss Rock

Friday I had hyperthermia, where I woke overheated and unable to move my limbs or speak for some hours until Linda came home. Saturday, after posting the blog, I slept, but grew steadily weaker. My face had been what Linda called ‘Grey’ until at 11:00, then midnight, I simply stopped responding and was unable to be woken. My bed was piled with blankets but under that my body was getting colder and colder. I was in moderate hypothermia, but not out in the snow, but under thermal blankets from head to toe and still going down.

Linda put the pressure cuff on me and the squeezing roused me, though I couldn’t see. My diastolic pressure was dropping. So blood was going out but I wasn’t strong enough to bring it back. I then went into a series of muscle vibrations and shaking, not a seizure but like extreme cold whole body teeth chattering. I was able to eat a bun with some jam, about 270 calories. I had not eaten much for the previous three days, perhaps a meal and a bit. The calories allowed my body to stabilize the heat. By 6:00 am, though still piled with blankets, I was able to maintain a ‘shock’ state, of grey and mottled arms with goosebumps, but could eat.

I am glad I am not dead, I don't know why I started going down so quickly, perhaps because I had about 4 meals all week. The calories seem to matter more now. I felt like I was slipping away, that I was losing.

I don't want to be that, a cold body for Linda to find, but this time, she was able to bring me back. And I went right to work on postcards - see, they do matter, quite a bit.
I heard it was sunny out, and having not been out in two weeks, I went to Moss Rock, with Linda taking cocoa along. I have been having problems with my right knee as each step, the ball of the knee is pulled out of the socket and then snapped back in. With two ascents, I made it to the top of Moss Rock, where I went the first birthday I had in the wheelchair. The sun was nice on the face, and I could look out over Victoria and the trees changing color.

Going down was harder, but we rested and drank cocoa on the bench you can see below in the video. I returned back to finish writing the postcards I had help stamp that morning. And then have spent the rest of the time in recovery since then.

Sun is good. I am not sure what goal to set for myself now that I am clearly dying. I think instead of trying to be what I ‘used to be’ I need to look forward and enjoy what I have while I can, and when I can. The greatest limit (besides gravity) is the inability to imagine what might be possible. It turns out this was.

Saturday, October 15, 2011

Day 44 of the shattered city: Beacon's care agency zombies continue onward

Beacon just called. Tonight’s evening shift, our only shift with a regular worker, is cancelled with less than 12 hours. Three hours notice is common. We only have a vague idea of how they make the plan, as the workers we like never end up on it. We think a Ouiji board might be involved.
No consistancy in care for 1 or 2 weeks is sad, over six weeks is as one supervisor states, "Appalling." it means I won’t get a shower today (read ‘this week’ – still waiting on the one for last week). I ate my second meal in four days. Thank you Linda.

This is NOT Linda’s fault. This is why Linda is emotionally shattered, and I was, ‘paralyzed with body in shock’ when Linda returned today to find me with a ‘grey face and your heartbeat is too slow.’

The worker they sent yesterday did not know how to dress me. I still hadn’t seen that worker after three hours and found her as she was getting ready to go. “Have you read the care plan?” I asked.

“Oh yes.”

“How many health checks did you do?”

“Wha?”

“Health…..Checks”

A blank look.

“Someone in this apartment is sick,” I asked her, “right?”

“Oh yes.”

“Did you check her health?”

“Oh yes!”

I tried to keep a blank face, as I looked at this person who I had not seen at all, and not once came to check on me. “And how many did you do?”

“I did a couple.” She said, her eyes drifting away.

“And how were they?

“They were very good. All okay!”

I nodded slowly. I was naked except for socks. I was waiting for help to dress, and had gotten most of the clothes off, but not on. She didn’t seem to think that a naked woman asking how the ‘sick person’ was doing was unusual.

This is one of the better workers they have sent. She is not coming back.

Rule #1: The sick person is always the number one priority of the care worker.

That is absolute. Dishes are not more important, whether there is good computer access in the apartment is not more important, reading what other workers have written for three hours is not more important (another keeper, that one). I am. They are paid to: Assist me in basic living care including DRESSING, SHOWERS, TOILETRY, FOOD and MEAL PREPERATION, GIVING MEDICATIONS AS NEEDED, CLEANING UP FROM ABOVE INCLUDING WEEKLY LAUNDRY.

I put that in all caps because this is not rocket science. Every worker sent is, Beacon tells VIHA, trained in oxygen. Only 1 actually is. I have not had assistance dressing since they cancelled (with no notice) a worker and sent, by accident, one of the better workers. Which I have not been able to have since.

If you can’t help someone dress, help them put on some jogger bottoms, and a top, then why are you still employed?

Linda is emotionally and physically exhausted by up to 24 of these ‘temp’ workers all of which are to arrive having read the care plan AND ready to work. Except they haven’t and aren’t. Linda put a sign on the door last week saying, “DO NOT wake Beth, note on counter.” On the counter the top of the note read, “DO NOT wake Beth!!!!” And what to do once I did awake. The worker turned on all the lights, and shook me upon arriving saying, “I’m here.”

I am getting less meals a week than days, and we are both emotionally frayed. My body is collapsing from the inability to have a regular sleep and wake schedule, much less exercise.

Linda is emotionally depleted and physically exhausted and simply stares at the phone as it rings, and rings, every day. We are to adjust our schedule, until 2 hours later, and we are to adjust it again. No one is ‘in charge.’ They are ‘all doing their best.’ The daily appointments, with palliative, with doctors, with whomever it is today means stolen sleep and 12, 14 hours without food or medicine. Except my heart starts to fail at 4.5 hours without medicine. My palliative hypersomnia is seen an offensive inconvenience. Some have postponed indefinitely. After all, one only works one day, 4 hours a week, another works 3 days, but only 9 to 3. “Why aren’t I working around their schedule?” They demand, threaten my care.

Does that mean you can improve it.

I don’t do that aspect.

I lie, less like a fallen angelthan a feral Zombie, tongue poking out of a mouth making eerie moaning noises. Everyone seems to have forgotten the point of this: Patient care and quality of life.

Linda isn’t paid to deal with these lists of calls to be made. Of cleaning up the emotional and physical mess the workers walk out on. Nine workers at three agencies are changing the wording sent to workers. One worker followed the instructions and ended up trying to assist the neighbors.

It is Monty Python, a world upside down (calling Terry Gilliam for illustrations!). A world with a line of seething Care workers, prying the door open, demanding that we take care of them, assist them, help them until we are drained.

I can assure you, these vampires don’t sparkle

Wednesday, October 12, 2011

Why is my 'dying' different THIS time: catching up on a life striving, alone

I’d say I’ve been ill, but like flavors of coffees served in deluxe coffee houses, there are thousands of ways to be ill. The human body is a miracle in fluid biotics, and I’m running out of systems or organs that work. I could not be woken, and so I sailed on. And by the time I woke, I could not move. How I can have the pain to make have moons with close cut fingernails while sleeping but paralyzed enough to take 30 minutes to simply sit up is perplexing. A couple hours later and with a couple tonic clonic seizures, and localized ones I am paralyzed again. I would love to say that I am patient and it is not tedious. The only advantage is the worker putting the eyepatch on me, propping me upright so I can drool and skip ‘Shiver me timbers’ to “Arrrrr!” (That sounds erotic: “Shiver me timbers”, perhaps a new pick-up line?)

Without enough food mass with morning pills I have an absorption reaction. It feels that the Arch-Angel Michael has seized my heart and squeezing it for his morning juice drink. At the same time, my forehead is popping, by body shivering and the blood pressure spikes are so high that my body shakes uncontrollably. Those are just the overbeats and erratics of my heart playing it as they try to jam eight lanes of blood traffic into a B road over the Dartmoor at 100 mph. The reaction continues for 20 minutes and unlike that infamous memo, this IS torture because it does inflict organ damage to liver and kidney.

So, I hate it when I take the pills before I eat, just because of a distraction. But the pain I experience hourly allows me to keep on until I can’t stay upright.

So….ill.

Recently, with ups and downs of energy and sleep I think I am simply disabled: a nice chronic disability, or cheerful degenerative disability. 2010 seems like paradise, the days when it was LIKE a bad disability, which is driving a body like a beat up VW: one which needs a host of brake, oil and other fluids added, plus needs friends to get out and jog along while it goes up hills. For me, I don’t even get to pretend I’m co-pilot or navigator, particularly when Linda, trying in her silent way to help, shoves me aside to dump a lot of expectations on my lap. Like arranging a meeting for me, and letting me know with less than an hour to go that I am supposed to eat, dress myself, do hair, get wheelchair ready and wheel .5 miles to meet someone I don’t know.

“Oh, I guess I should have told you about that, right?” she says, as her expectations end up throwing me into the back as she tries to manipulate my body without bothering to pick up any data (like driving with the windows and windshield blacked out)…until the body crashes.. That’s when she turns around and effectively asks, “This is a rental, right?”

The three hours of exercise last week worked (except for not sleeping for a day), so I did another two hours on Saturday. So Linda decided we should go picnic 12 hours later plus do postcards and that non-sleep, fatigue caught up.

I was mentally revved up doing some academic sub-contract work until I had spent a couple hours plus interpreting a 1986 Anti-USSR pro-marxist LONG academic paper from a misogynist attempting to appear a feminist. ‘pink collar workers’: have you heard that phrase in a while? No, me either. I took that as a sign that culturally we HAVE advanced! Of course, nothing harder than trying to explain offensive horse shit in a public environment, like how women’s ‘feminist dilemma ’ is our yearning for the freedom we enjoyed under the patriarchal framework, where men are always in charge from home to workplace, that firm hand so ‘natural’. Then there was how we (women) are failing civilization by attempting to teach outside our gender context (big brain subjects like all sciences), which has lead to the ‘new math’ and ‘new science’, threatening global security as we lapse behind the USSR. Yes, our statistic problems with parallel parking destroyed the world, despite the fact that with 25 years of debate, the US Shuttle is grounded, and the Soviets are keeping humans on the international space station.

An interlude here to let you know that I wanted to do a space update based on previous research soon. In the last 2-3 years, Japan has created not just 1 but TWO space engines which surpass all current tech elsewhere like a Warp 9 being launched the same time as a Warp 2 (one ship went to the same planet as a US probe, returned in a few months, all while the US probe was still on the way back, and not due to arrive for two years more). Nasa’s annual symposium managed to claim credit for it (they tried and failed with the engine couple decades ago).

Back to how women shouldn’t teach or do things outside of ‘pink collar jobs’ due to a) the need for a stable nurturing figure for young elementary school students and b) All women live in a Zero Sum Gain paradox: we cannot fully be there for ‘our man’ AND function as anything other than a drone at work. Sorry, we are not management material. All of this was hidden, like the bulk of bad writing and weak premises passing itself as academia under the Wittgenstein escape (from a misused idea out of Philosophical Investigations where words of vague usage and meaning may be more flexible). While reality is if you spot three big words in the first paragraph that have no fixed meaning and you can’t tell WHAT the writer means….’yes Capt’n, the crap detector is off the charts’.

I solved his problem the same way Linda and I did: alternative family units, like same sex couples. So lets beam up to a Star Trek spinoff, warp into a sun/black hole/etc and travel back in time to get this guy some man love, or a triad.
Oh, and Starbucks to celebrate Ontario’s 7th anniversary on the legislation to make all of the province barrier free by 2025, took out the wheelchair/disability table in the village to put in a ‘standing bar.’

I used up most of yesterday’s energy talking to the Canadian 2012 coach for paralympic swimming to find out how the reclassification of autonomic failure or dysfunction in wheelchairs as ‘doping’ and ‘cheating’ would affect me in a sports ranking. You know, to get that Boston Marathon qualification. This turned into them wanting to know why I can’t afford to get my wheelchair repaired at the shop and why didn’t Linda get her job back.

Besides that the job, and department doesn’t exist anymore, in an economy where the main employer is one form of government or another and you live on an island, and several TENS OF THOUSANDS of people are let go to try and deal with overspending on the winter Olympics, this question isn’t worth answering. I will say that her mentor, with 18 years in government as a high end manager managed to get a job after a while helping process drivers’ license (a job Linda didn’t get short listed on).

They don’t see any hurry for wheelchair repairs, so the one with the seat, cushion, arm, back and neck/head support wrong is over a month just to be examined. “So what if you are dying, the doctors always think you are dying, what’s different about that?” They say.

This shows both a common bias but a good questions based from ignorant premises.

The Bias is this: if you have a rapid disease, and you aren’t dead, then it wasn’t really that RAPID was it. Right? Okay, it has been 4+ years and I have heart lung, diaphram, failure even while sleeping, but I can’t be THAT bad. And if you happen to be one of the only people with this disease variant who are alive this long if not THE only one, then again, what indicates you are going to die any time soon. It is like having to run the ‘fitness test’ for 12 minutes as hard as you can, and then if you don’t vomit, “You must not have been trying,” and are sent to run it again. And when you come in and vomit the second time, you are told, “Vomiting often shows who the slackers are.” And are sent to run it again.

Important note: THE PERSON SAYING THIS ISN’T RUNNING

I can understand that when I was out and slim and fit and ‘doing’ by boxing, badminton, tennis, and taking on the establishment with additional time to go wheeling for photo taking, then it was fun. I blogged daily for over a year in 2008-2009 so why not NOW? Well, when it became clear I wasn’t disabled, but dying, I lost a lot of readers/commentors. Then when I didn’t die within a specific time, I lost more. When, with me screwed and Linda unemployed and our lives on hold for over a year and a half, I lost more. Why check by daily, even though that is how often I write. It just takes days to get the a post done. And without a flow of free postcards going out, even more left.

I keep thinking about Sara, and how her fun and funny cooking and living blog about amputation living became about cancer again and her brain tumor. Then it was about post-surgery and recovery. And then there were infrequent posts, some trying to be like the posts of past, others short updates. Her emails dropped off, as the cancer spread everywhere and her husband/partner worked and cared while for 8 months she degenerated and spent the time getting from the start of the day to the end. There might not have been hope, but there was at least some point in going to the hospital in emergencies. Was Sara of Moving Right Along any less worth knowing? No. Indeed, I tried to email her regularly knowing I would not get a reply, but I did not do it enough. My ‘Family’, my co-exchange individuals, met online have been silenced one by one. That is a choice. Sucks for me, but then, I can’t BE the Beth with Energy levels of 2009, or 2010.
So go get me some individuals with stage 4 lung cancer who start berating someone who has cancer in the brain, the heart, the lungs and lymph nodes on surviving another year and then there is something to talk about. Take the miracles when they come and as they come. So: Why am I dying ‘this time’

1) The two doctors of the palliative unit going to bat, overturning VIHA by emphasizing that I clearly have less than six months (that was over 3 months ago).

2) The emergency response team from palliative department show up in the living room.

3) Having internal bleeding all the time

4) Having the bleeding increase 20% in the last month.

5) Having organ and internal trauma now exceed that of full time athlete and tri-atheletes.

6) Inability to go without absorbing nutrients for more than 14 hours before going into shock.

7) Inability to go without medication for 24 hours without pain increasing to the point of being held down and screaming until the voice is gone.

8) Failure of heart, lung, diaphram, liver, circulatory system.

9) Heart is in a state of continual heart failure, which would lead to death, except the thousand fold increase in erratics which tells the body the heart is shutting down is electrical. But also because the heart uses only the aurota’s, and the ventricles not consistantly.

10) Failure of the diaphram causing stopped breathing and crushing of the lungs. Over 1 week of having to have someone operate the lungs for me. Now, even that fails as it goes into the stomach and prolongs the lack of oxygen.

11) Having to triple the stimulants to keep the heart beating fast enough to allow me to be conscious (often caffine).
12) Requirement to exercise with extreme blood pressure and heartbeat for over an hour in order to sweat, and do that each week. When I fail to exercise, the edema takes over and the vascular degeneration accelerates. So no matter how hard a week, or sick, I have to go up and work out. Then not sleep the following night from muscle pain.

13) Acquired muscle and connective tissue degeneration and tearing.

My body is a very delicate balance where IF I do over a dozen things all within exacting perimeters, I do not die right away. If I fail to do any of these, or let any of the secondary dozens of things I have to do to manually compensate for every body function from my intestines, to temperature control, to blood flow regulation, to actually being able to generate body heat (which I can’t do if I miss eating for just 25 hours). And if any of the extra stressors are not fixed, and all of this is maintained then RIGHT NOW, I won’t go into the ‘death cascade’ or organ failure.
To do all that used to take 5-10% of energy a year or two ago, now it takes 60%+ So, if I have an appointment and lose 2 hours, I am behind on doing the things to keep me alive. I can still have, due to becoming too weak heart failure, lung failure, diaphram failure or circulatory failure including pressure spikes producing a massive stroke. The TIA (micro strokes) are back all the time now. That takes a whole 2 days of dedicated effort to go, to sweat, to shower, to dress and then to recover enough to sleep without stopping breathing. And now, before flu shot, with the blood test showing I have no resistance at all, any infection from a tickle of a sore throat of a worker that I catch WILL turn into pneumonia. And yet, every week my pain increases, and I weaken. There is a limit, fairly soon, of how much more pain med I can have, and then I just won’t be able to sleep. Or my liver will give out.

Perhaps that will give you a clearer idea of why I am dying soon.

I am still working hard to be a better writer, witty and interesting, engaging even in dying.

In between the hard times, I keep yearning for that better life. I want Linda to sleep. I hope that if she does, she will be less cruel. And when she is angry with workers, she won’t take it out on me as much. The workers, coming and coming, ‘a sea of blue’ (blue are ad hoc workers, and black are regular) the night RN says looking at the last three weeks. She sounds appalled. I sound desperate.

I haven’t had but one trim to my hair in 2 years (it is a mare’s nest of tangles). The needs I have are specific but also small and large. I haven’t been able to service my computer in six years. The van needs a tune up. I have no place to wheel to as my Starbucks card was used up several months ago treating Linda to a strawberry drink. Knowing I have $15 to get something at Starbucks makes a difference. Choices make a difference.

The money I have for my emergency funds to get back from the hospital (if I am out and collapse and end up in hospital, I have to pay to get home), that was used to pay for parking. During the summer, I watched TV series because the heat make my health brittle and the pain throb like bass speakers on a tweaked out car. Even as I sell them back quickly I lose funds each transaction. The $10, and $15 and $10 all add up. I’ve been selling books and DVD’s. I saved some funds. Linda kept telling me she needed a large fleece blanket for the winter. I gave her one last week, it took the rest of my savings, that and some more presents for people. I buy items and forget that they haven’t contacted me in months. I will save to send them out, I guess.

I have now seven full boxes of presents. I am working to send them out. The problem is that many of the people, during the summer having gone away and not returned, I don’t even know if the address is current. I don’t know if they remember me.

They left before I could thank them for being a good friend. Before I could show them that I loved them, as they had shown they loved me. Linda’s lack of sleep affects her, it changes her.

She forgets I am fragile. She forgets that I only remember the terror after the incident is gone.

I want to have a better life. I want to go on respite, and I need to save for it. Whether I go to a motel or the hospital, it costs. I want to live.

The disease doesn’t care what I want. And I am running out of time.

If you asked me the one thing I learned in dying this way: fast but still slow and hard. I would tell you that it is to die comforted, to die knowing that you are with the person you love who also loves you. This is what Jesus screamed in an emotional pain greater than the physical pain of dying. When we die, let it be craded in love.
I think the hardest thing is to die alone.

Monday, October 10, 2011

Write a happy song, do not end up like your father

When I was a child I was diagnosed with a host of learning disorders and was to move into a ‘short bus’ school for retards. RETARDED. That is the word that was used. I was RETARDED in my development because I could not read like them, or write like them. (Yes, the word is deliberate, because it was a label, it was written, it was said, it was an identity, it was all that I was).

I escaped that, in a province where the sterilization program for RETARDED girls and native women was still going on. I escaped because my father was transferred to Surrey, BC and they didn’t have enough room in the first grade/kindergartners’ room so I was put in with the second graders. And because I had Dabrowski's Sensual Overexcitabilities including but not limited to hyperacusis (hypersensitivity of sound, to the point of extreme pain), I just did ALL the work on ALL the blackboards, because mixing with kids playing after doing classwork in the back was painful. Mozart had it, as he was so sensitive, so to 'fix Mozart' his father paid someone to sneak up on his very young child and blow a horn. Mozart’s face drained of blood and he passed out of pain. Texture, smell, they are things which are turned on. It turns out that neuro-diversity affects not just what can be done in the head, or processed, but advanced processing of data includes ALL data (like the senses of the body: sound, texture). So with all the same learning disorders, I was bundled into GIFTED (they held some of the pages up to a mirror and realized I was writing just fine, just not the way they wanted). And yes, I was unable to 'adjust' to regular kindergarden or first grade because children are LOUD and I can't understand what the teacher says. Thus I was 'unable to adjust to normal schooling, unable to do work assigned, unable to function' conclusion: mental retardation. Except I was able to do ALL the classwork including several grades above me when left alone. Conclusion: Gifted.

So what? Well, it demonstrates that what is assumed is not always the truth. But then, this world isn’t really big on truth, but it is big on perception. There are things which are unstated but supposed to be ‘understood’ – one I remember which caused quite a lot of physical ‘instruction’ (this is what happens when you get hit, you learn…things, perhaps not what they person wants, but you learn) was not to stare at people. I could not look at someone directly for more than 1 second. Three seconds was immediate physical punishment. Things I was ‘supposed’ to know.

As a human, both legally and morally, there is absolutely no difference between someone who is cared for and the person doing the caring. One is not superior, nor inferior. In the same way, someone with an IQ of 190 and someone with an IQ of 70 are EQUAL. The law states that, in the human rights charter of Canada. But socially it isn’t applied. In the same way studies have shown that resume’s with ‘black’ names like Lakisha will NOT get shortlisted while the same resume from Emily will (Oft repeated study starting with MIT and university of chicago’s mailing 5,000 resumes) – Emily will get shortlisted 1 out of 9 resumes, while Lakisha will get shortlisted 1 out of 17. This is constant regardless of position, from entry level to manager, to president of company. Overweight individuals in shortlists with the same qualifications are NOT chosen at 9 to 1, and those in wheelchairs, dozens to one.

I have genetic abnormalities, I was born with them. I am a 47 chromosome. Why is it that one person with extra chromosomes is born with downs and one is born with mosiac? Both have connective tissue and heart disorders. In case you did not know mosiac is one of the chromosomal intersex conditions, some of which are visible at birth. Intersex, or DSD really boil down to: can you produce children? But in society it is more than that, it is: can you conform (in terms of gender)? Yes, and No.

Dabrowski studied sensitivity and how it turned out that some babies cried faster due to pee, found it painful to have the seam in socks anywhere except at the end of the toes. Dabrowski found that some children could have all these, as well as what he labelled as extreme empathy. This is also the same style of extreme empathy found in females with autism in a German study. He found that these individuals were more likely to be AWARE, and thus be gifted – the diversity allows for understanding, allows for creation, if they are helped to stop living in hell, a sensual hell. Except that my father believed, like the lab rats he worked on, that his children were all the same. And the religion group made him the teacher of discipline, and so he taught thousands that all children are the same, that they can be hit and it will not hurt them starting at six weeks. And that they cry but not to go to them, starting at four to six months.

I have this split world, this literal aspect of two, both in mirror images. I was, at some point, perhaps only as some split cells, two. I was two and now I am one. Instead of twins, I exist. I am both. I have dyslexia, I have what is now called autism, I was RETARDED and I was GIFTED. I was determined both, by exam of the same materials, by advice of doctors. I was to be in a school which taught nothing but I ended up taking multiple grades at the same time and reading Homer’s Iliad and Odyssey. I am both. And I am equal.

I am genetically different, I am altered not because I needed to be, but because others felt uncomfortable about my existing. Decisions made at birth, operations after. I am not the typical female, yet I am female. Many females don’t know they are intersex until they try to have children (and can't without help). So what? A doctor stands over you as a baby and decides if you are a boy or a girl because he feels uncomfortable? I was left in the hospital, no one to rescue me. My mother was called by the hospital after leaving without me and not coming back.... Mosiac is not abnormal, I think we, in our social inability to expand what normal includes, is abnormal. I am not Kennedy Syndrome, or Williams, or a female Klinefelter, though there are females with Klinefelter, nor Turners, but Mosiac.

I learned to be loved and I learned fear and pain. I find the world painful, I find the world wonderful. Sound is pain, touch is pain, smell is challenging, empathy is pain and yet it is a state of being me. I am unfinished, I am finished. I am atypical for a human, but I am within the limits of diversity. I am a success, I am a failure. And there is no answer to this

I have no peace. I create because I will not cry, because I do not believe that I am alone. You are not alone.

I die because I am slowly unable to sustain the basic function of heart, lungs and circulatory system. I am socially discriminated because I am not seen as typical, not seen as disabled, not a recognizable disease and not recognizable in how I die. I exercise on Thursday, I exercised on Saturday. I go naked for my body is not my body anymore, as my heart failing changes it; my cells breaking down change it. I stand, to try and change, and they worker they sent me is 4 foot 8 or 9 inches. We are a group, one wheelchair, one cane, from 4’9” to 6’3”, all at different paces, we are typical we are not the same.

This is living.

Mika, a Lebanese singer moved to London, is a recent hit. He was used, he was taught from a young age, his first piano composition at age 6 or 7 was titled ANGER. This is not happiness. I mimic someone, telling my grandmother ‘I will kill you, I will murder you, I will chop you with an axe, are you listening to me?!!” I natter on. I am aged three or four, and would record these tapes in the basement. I seemed to think that saying I would kill, I would chop them up was how people asked if the other person was paying attention. Who did I hear say that? How does a three year old know the word ‘murder’?

Mika, who was recently knighted in France, writes Elle Me Dit. Which means: She Told me.
She told me
Write a happy song
Not a depressing song
A song that everyone loves
She told me
You will become a millionaire
You will be proud
Do not end up like your father

She told me
Don't shut yourself in your bedroom
Go ahead shake yourself and dance
Tell me what your problem is
She told me
Why aren't you more suave
You're stoned or broken or worn
You'll end up like your brother
She told me
She told me, it's your life
Do what you want, oh well
One day you'll understand
One day you'll want it
She told me, you're a zero
Get out of your bubble a little
You don't do anything important
Looks like you like it like that

The chorus is her shouting: “Why are you wasting your life?”

"She told me something that I love, she told me to dance."

While I live, I am. Who is it that sends you? I am that I am: so let’s dance!

Thursday, October 06, 2011

WolfHound: A Russian film epic akin to Beowulf

WolfHound is a Northern Russian epic set in the 8th or 7th century. It is like watching The Epic of Beowulf but a Russian version. It is entirely a pre-Christian druid culture of northern Russia and whether you like Sword and Sorcery or are interested in the roots of early Russian Traditions, this is a great watch.

Our hero starts as a small child watching his father, the blacksmith, make a sword. A raid sweeps over the village and before the local druid can form the chant to protect them, he is killed, and everyone killed. The father, with his giant hammer, holds out longest and his killed by a man with a wolf brand on his hand. The boy, only six or seven, is sent to the mines, to be a slave until he dies.

Our full grown hero emerges, with RaggedWing, his bat companion,. We see him as he sneaks into the castle of Man-Eater, the lord who led the raid on his village. This is set in a time when you referred to your ‘clan’ not your nation, and the druid and ancestors of your clan watched over you. As he is determined to kill the Wolf, our hero calls himself Wolf Hound, on the giant hounds of Russia which are used to hunt wolves. He gains friends, saving one woman from rape, another from the dungeons where he was put, his eyes blinded because he built the castle for Man-Eater. This blinding has given him both prophetic sight and shaman powers of healing. Healers, in this time, are part medicine and part shaman. As later we find out when a woman is to be killed with an infant because the infant was a breached birth, and she delivered him. This, it turns out, is a sign of weakness on the infant (a boy who is too weak to come out of the womb), and turning of destiny by the healer, as the infant was ‘fated to die’ but lives.

The houses and even the great town and kingdom center is made almost entirely of split wood, with wooden streets and only the palace has stone floors and pillars. It is rustic, it is realistic. The daggers are pre-steel, often triangle in shape and the swords are for hewing not for cutting. WolfHound rises in both wealth obtaining a sword, a scabbard, horse and fur lined drinking bottle at a time when what you could carry was your possessions, and a gift was likely one of the few things you owned. Another example of how we have lost the meaning of things in this age (back when a ‘gift’ meant one of the few possessions of someone), is when a freed slave asks if the Princess is pretty and WolfHound gives her a coin, so she can see the princess. Another time, Wolfhound frees a slave who is persecuted for believing in the ‘true twin gods’ rather than the local gods. “A man should have the right to his own gods” Wolfhound says before buying the slave.

In battle, when Wolfhound ties back his long and ragged hair, then watch out! Having had many teachers, WolfHound practices the sword every night, and in saving the local princess from an assassins’ dagger, he gains favor but also a fever. This is a time when a simple wound lays a person up, pre medicine with nothing but ‘vitality’ to aid in healing.

In Europe this film was loved, rated five stars while in the US it got only 2 or 3 as an audience who is used to grand palaces and heroes who take multiple wounds but are unstoppable. This is however the 7th century where 60 people who make wooden walkways over the lake may be called ‘the Kingdom of the Lake People’ with a matriarch to lead. Or where old stone circles are a safe retreat but also a place where the ‘Old Gods’ reside and can be called upon. Even in the main city, WolfHound comes into a large circular building where twigs of rare trees are offered to the ancestors to warm them so they show favor on you.

I was fascinated by watching Russian bridal rituals, where the woman, after grain is poured over her, is placed into golden shackles after her head is covered with a bride cloth, to show she is pure and as her father shackles her, that she is bound for her husband only. She is now to travel to the next ‘Kingdom’ (probably about 100 miles away, but several nights and days of travel), to see her husband for the first time, who will guard her city and Kingdom. Having grown in favor, WolfHound is to be her guard. There are several threats and attacks as ‘The Wolf’ wants to kill or capture the princess, and her guard, Wolfhound is always in the fore of battle. The two grow in love over the trip, a doomed love as they can never be together.

One night a healer/vision woman sings a song (which eventually swells with that deep Russian bass). The princess wants to know more about this pretty song. The woman tells her it is the tale of a slave. One slave who took on the fiercest guard, fought him without weapons in a death fight and won. And thus he won his liberty and changed his destiny. It is sung by slaves and the oppressed to remind them that Destiny can be changed. This makes the princess love him all the more.
The feats we see and the song that is sung remind me of Beowulf, whose bravery is told in tale in the great hall. We hear that even his father, he was was the one man who could make a sword that would kill the Wolf. The Wolf seeks to free the God of evil Druids, who will make all humans slaves with these evil druids as masters. In order to gain power, he has given away his face, using only a mask for the rest of his life, as well as performing power rituals with blood. Of course, only the blood of the princess can open the prison of this God, and so epic battle ensue.
If you want a mindless action adventure story, this may not be for you. But if you want a sweeping Russian Epic, and experience what the tales of old, of Arthur and Beowulf might have been like, then this film Wolfhound is about $5 and definitely a high budget Russian experience at just over two hours.

Monday, October 03, 2011

Postcards and Power structures

I worked this weekend on postcards for new requests, people who had sent gifts and those who sent postcards or letters. My health is such that while it was fun to do the postcards and stamping with Linda and Cheryl, it emphasized to me how what was an ‘addition’ to the weekend, now is my entire weekend. Plus, I was working with the new stamps we had received, which I spent my saved funds to buy at the local sale, but was too ill to go myself. So now, the joy of finding the perfect stamp, or getting that bargain is gone. Plus, though I search for and buy the postcards, I am too ill to do much of the matching, so that is gone also. And so 35 or 40 postcards, stamping and writing them are the entire energy that I have for a weekend.
It reminded me of the odd hypocrisy which seems to surround degenerative and terminal or life shortening illnesses: you have to work twice as hard to prove that you are ten times as weak in order to receive care and quality of life far below that of an average person. How a year or 18 months ago, the main focus of the weekend was going out somewhere, then in the evening I would do postcards with Linda and Cheryl, sometimes 30 or 40 or 50 or 80 postcards, and then do something Sunday morn, before spending a couple hours writing up the postcards. But I didn’t go outside, and it isn’t something ‘extra’, it is the whole energy of the weekend, after which I was passing out until I could get to bed and fall into exhausted unconsciousness. So what someone can write during a lunch break is now two days of work and two days of prep and recovery. And how is that rated in quality of life? It is higher in some ways than the weekend before which I slept the whole weekend, unable to be woken, but also lower.

And yet, it is at least a choice. Of a life with minimal choices and support, in this I get to be the giver of neat things. With life under care, it is the small things that tend to matter. This is small to you, but a deliberate choice and sacrifice for me.

Take for example palliative hospice. While it has taken four months of work, requests, doctor and hospital visits, due to a four day delay, I lost a respite, and have to wait an additional two months. So far, I have been told on the phone that the building is old and the RN’s in charge are inflexible, and perhaps this isn’t the respite for me (by the RN in ‘charge’). The video doesn’t show those who stay there, but only those who volunteer, who work there, and who have a loved one there during the last weeks. None of the quotes, even the ‘guestbook’ comments come from actual individuals who stay there. Why not?

Well, on the surface, it would seem, with the aim of improving the quality of life of the dying, that those who stay are the ‘boss’, and that the ways in which their condition exhibit would be accommodated. Also that the environment is set up for them. That would be the logical conclusion from the goal statement. But add in RN’s who see people come, die in three weeks (they don’t like you to move to hospice until the last three weeks), and go, over and over. It is not long enough to develop close bonds, nor do those coming have the energy usually to be seen as individuals, instead of just another ‘client’. So saying I don’t sweat got the comment that ‘perhaps this isn’t the place for you’ from one of the RN’s in charge (who don’t answer phones or work past 3:45 pm) and the sound sensitivity problem from the Fentanyl got the comment ‘well, this is a hospital, and you have to expect that.’ From the other RN.

While there is a full kitchen, for family members to use, and couch chairs for family members to sleep in, as well as a roof top garden, the majority of the 7 million in funds is for staff and so the ‘experience of death’ is as comforting as possible for the whole ‘family’. Those who have a family member who died there go for walks weekly, leading to a breakfast together, and they often volunteer (over 400). Yet, none of the able bodied individuals, or those who have done care giving there would chose to stay there themselves for the mandatory week (you must stay a week for respite, and that is all).

I am scheduled to go, yet when I asked, Linda looked somewhat horrified at the idea of staying there for a week of her vacation. She and ALL able bodied people said clearly 'NO' when asked if that is what they would want to do. Yet for me, this is something I am expected to do, and be glad. Yet, my Doctor wants it so that I can be observed in all hours and have my problems mapped and tested. Does staying in a hospital getting tests and observations sound like a vacation you would want? I find it difficult, sifting between the control words of ‘allowed to…’ or ‘permitted’, and knowing that this is a place where I may be the youngest person by 40+ years. Yet, despite that I am the bottom of the food chain, I still have to find the hundreds of dollars to stay here (since I can't stay what I can afford, but MUST stay seven days). Generally those 25 and under don’t die here, they have somewhere else, with X-box 360 and games raised by the Penny Arcade foundation. Here, there are people to take your life story. I would rather have the X-box, or Playstation 3 to be honest.

Those who are stable and disabled are seen more as individuals than those who have such limited energy as the dying. Caregivers, who group together, both to face off against the agencies and organizations, in order to be heard. Then there are the care agencies and government agencies. And above them the doctors and the specialists. But who is the advocate for me?

Who will take responsibility for my voice, to find out and ensure that I am heard as an individual with a disease, but a person, equally human an valuable as the specialist?

Not the able bodied, as Alzheimer’s often demonstrates with the immediate reaction of horror and ‘shoot me if I get like that’, when Alzheimer’s is only half of the numbers of those with dementia, and only one of the many conditions which cause dementia. Dementia is not fatal. I mention dementia because it is a disease aspect in which there are many clamoring voices, yet little to no representation. For Able Bodied individuals it is a ‘tragedy’, which describes their feelings of loss and care giving, not whether Aunt B or Uncle G was smiling or humming all the way to a death of old age. The disabled see it as a line of battle against those who would allow and expand Euthanasia, like the group Not Dead Yet – worried not about those with dementia, but that the implication of a lesser life could spread so that people would be killing those with their condition. The doctors and specialist give the diagnosis and statements and then fade away, while the care agencies and caregivers decide what is best, often label people as ‘difficult’ or ‘complex’ (like myself) in negative terms. And it is negative simply because humans as well as the diseases they get are diverse. I have repeatedly been told by Doctors, Specialist, those in charge of programs and 'gatekeepers' (those who decide who is 'worthy' of some aspect of care) that yes, they are discriminating against me becuase my disease is rare and thus 'complex'.

The primary caregiver support and lobby group in Victoria, following the example of other groups has createds a Caregiver Bill of Rights, but does not have a Caregiver Bill of Responsibilities, or a Minimum Standard of Care, or Desired Standard of Care (or even hands on training for doing caregiving). The ‘Bill of Rights’ is to advocate for the caregiver and to protect and defend the caregiver against all threats (which seem to be family members and loved ones who are cared for). “I have the right..to reject any attempt by my loved one (conscious or unconscious) to manipulate me through guilt, anger or depression”, “I have the right…to get angry, depressed and express other difficult feelings occasionally”, “I have the right to EXPECT and DEMAND that as new strides are made in finding resources to aid physically/mentally challenged and ill persons in our country, similar strides will be made toward aiding and supporting caregivers’.

So, the organization is not to assist caregivers advocate for those unable to, or for those with illness’ which require caregiving, but to collect power for caregivers, but without the rules of ethics that LPN’s and RN’s have, or the Oaths that Doctors have.

I am leery of any organization which sees illness and disability as ‘entitlement’ and ‘demands’ that they get the same or more. So if someone with ALS gets a speech pad, what does the caregiver get? The person cared for doesn’t have the right to get angry or depressed, lest it be seen as manipulation (how can burn-out or a deep depression classify as ‘manipulation’ instead of an illness?) while the person caring does have the right to get angry and ‘other difficult feelings’ Perhaps those feelings include ‘I want to kill them’, as Robert Latimer, Canadian, who suffocated Tracy, his 12 year old daughter with cerebral palsy while his other children where at church said that he gave her the care he would have wanted for himself.

Again, where IS the advocate and voice for those like myself who have severe or degenerating conditions? Most people who state that they would rather die than have dementia can’t name three different types of dementia, or realize that some dementia’s have the person cognitively lucid and focused for extended periods of time. And neither do many caregivers.

Who do I decide to trust when the workers I get from Beacon are determined by union seniority, the VIHA staff the same, and when things like ‘customer satisfaction’ sheets are a requirement only on paper, never seen in real life.

In the end, no one takes responsibility to help me have a voice, or even have the basics of care, much less a quality of life. If you are under 18 or over 65, there are laws (more for those under 18). If parents can’t give food, sleep, clothing, showers, water to a 14 year old, the child is taken away. I have careworkers come two to three times a day, I have two RN, a case manager, two schedulers’, a GP and now an emergency response palliative team PLUS Linda and yet last week I had 7 meals for the week, the week before I had 10, the week before I had 11. I have not had assistance for a shower, thus no shower for nine days so far, it was 8 days before that when I showered last (so 17 days and one shower so far). Medicine is missed regularly. So who, as I grow weaker, and weaker, knowing that my caregiver has the right to get angry but I don’t, not even unconsciously, in case they feel bad. That I do not have the ‘right’ to have the quality of life as if I was healthy, but according to the Caregiver Rights, the caregiver has the right to maintain and PROTECT that right.

Canada doesn’t have any rights or laws to protect those with disabilities, nor, as I have found again and again, will they enforce the BC human right that a disabled individual is free of discrimination.

Why does this matter? Because those are real people, so real, it is the person staring me in the face in that mirror. Yes, I am the person who, if my care giver believed what most do, would ‘kill me now’. I am the person which must not be suicidal or want to die, lest I let the ‘movement’ down. I must ensure that I do not diminish the quality of life of any of the able body people who love me, and accept that they have the right to get angry at me, yell, get depressed and deny care. I must accept that workers banned by all other of the 6,000 clients are allowed to come to me because they have worked for X amount of years already, and are paid whether they work or not. And I must go away to ensure the quality of life of a caregiver, to a facility which diminishes my own quality of life.

Or to put it simply: if a hospice that is presented as the highest standard can’t come up in quality of life to a basic three star motel, and an organization works to have a 'Bill of Rights' so a family member of someone with Downs' can yell and get angry at them, or a family member can terrify with frustration and careless words a relative with dementia (which indicates that will be them one day also), instead of teaching those same people caregiving tools and responsibility, is there not something wrong with the picture?