Thursday, August 30, 2012

Wheelchair give-away, living as a 'have not' & medical care

I own a wheelchair, small enough to get through the door of the apartments built in the 70’s and 80’s, before building boom made everything small and wheelchair impossible. But with Indy, I didn’t need the E&J manual wheelchair anymore. Linda wanted to give it to an organization that takes medical equipment to Africa.

“But there are people out here, in this city, who need a wheelchair and can’t afford it.” I said.

Linda relented and put it on the local swap and shop for free, the same price we got it for. She had two requests in an hour. And the first person contacted her by phone and came and picked it up all within an hour. It is for a senior who has problems moving around.

I hope they remember to pump the tires all the way up. More glide per 'omph.'

Medical care, and who can and can’t afford it, even at a maintenance level is the new problem of Canada, US and UK. Some provinces pay for meds, others don’t. Provinces are labeled as ‘have’ or ‘have not.’ And while Ontario, where Toronto is, is a ‘have’ province, while BC is a ‘have not.’ There is supposed to be transfer of funds to help those provinces which are ‘have not.’ But when Alberta is to make $600 billion out of just one oil field and the pipeline through BC to the coast, and BC makes 4 million out of the same deal, but faces the costs of clean up, and repair are all borne by BC.
So the most BC can afford is to give a discount on meds to those who are impoverished, though how they are to pay rent, food, taxes and medicine costs on the $782 a month, I am not sure. We expected to get a large tax refund, but it was taken by the government because we had be unable to pay the $100 per person per month for medical coverage, so they took it out of any refund. So yeah, I know the feeling of constantly climbing a mountain and never get closer to the top.

But in Wales, it was the same, as one of the ‘have not’ districts in the UK, we had a heart surgeon who was convicted of negligence and killing patients but was kept on because there were no other surgeons. And the friend who came out of a induced coma to beat cancer was never able to leave her bed for the 14 months because…the entire hospital only had one portable ventilator. So the standard wheelchair with throat ventilator was something the Hospital in Cardiff couldn’t afford. So she died, in that bed, in a room with eight people and a curtain, never to see the sunshine. And a friend was told they had a nine year wait for a hip joint replacement as it was ‘elective’ surgery, that’s when you know you are in a ‘have not’ district.

Currently, when I see people interviewed in the USA, the one country in the ‘first world’ without health care, that they don’t want Obama’s health care because it could ‘limit choice’ makes me think they haven’t experienced a ‘limit’ of choice yet. And when the Republican Party platform is based on how wealthy you are and how much you have paid in, so those who get with MS, Lupus, ME/CFS amoung other diseases are out of luck. The health to wealth connection is planned right to care homes. Yikes!

By the by, the IRC (International Red Cross) has determined that the use of medical information to threaten medical care, or disrupt medical care, or create fear that the information will be used against a person is Torture. So perhaps instead of trying to get your local health care or VIHA to get their act in line, just get the Hague involved. A few convictions for ‘crimes against humanity’ might get care in facilities and communities better monitored.

I can dream.

Thursday, August 23, 2012

'The Cabinet of Unearthly Delights' and part 2 of Moss Street Art 2012

Recovering from a lingering fever, now that the heat is down enough to allow me to sleep, I thought I would do part II/2 of the Moss Street Art Fair from 2012. A month ago, that was the day that it was announced as the ‘hottest summer for 30 years.’ Since then, it has been unrelenting, often 27 C at 10 pm (mid 80’s), and last week going into the 30’s every day, so the apartment is only now cooling off.

So back before Olympics stole the viewing time and heat the ability to go outdoors, the moss street market was my big outing in INDY. One of the things I enjoyed about the Moss Street Art Fair was the diversity of the mediums, which included a full installation of a canvas tent and wooden box and three legged stool with a sign reading ‘The Mend is Nigh’. Here is an artist who paints birds and goldfish with Sakura blossoms but on wood instead of canvas.

My favorite piece was by Horst G Loewel, which I called ‘The Cabinet of Unearthly Delights’, and reminds me of the Atlas of Borges, a visualization of the imagination
(If you want an interesting book, the Argentine writer Borges, who became blind in old age, wrote an ‘Atlas of the World’ filled with his travels with a companion who wrote his dictation – of a piazza and fountain in Rome, or sitting by the water in Venice – HIS Atlas of the World, as experienced by a blind writer).

This artist painted with airbrush.
She was present, and demonstrating different airbrush techniques by using a model and airbrushing them as a demonstration art exhibit. You can see her working on his feet. Diversity, yes?

Here is a very Canadian picture, the ice of Labrador, or the ice bergs that float in summer into the coves of St. John’s.

I talked to an artist Tad Suzuki who was from Tokyo, Japan but now he lived and traveled North America, painting only urban landscapes.
For those of us who grew up in the urban environment, whether the small town, or New York, he paints it, often without people, those late evening lull or rush hour traffic experiences. This painting looked like it was painted in Port Angeles, but is actually from California. I guess the wash and dry Laundromat along with parked cars, left over snow and some empty stores with awnings is a Canada/USA experience, which isn’t fixed in location. After so many hours in my life at laundromats watching laundry going round the dryer, then folding one of the best parts of the UK was dropping off the laundry and having them charge 80 pence a bag to do it, then picking it up on the way home.

For me, art is like poetry, it is something that I like to experience in diversity, even if I don’t like it all. Art and poetry are needed, not in the way food might be, but in order to have a life beyond survival, giving existence that added depth.

Friday, August 17, 2012

Hot as Not

A heat wave with every day the heat being 10C or 17F higher than average, 5C higher than forecast, the apartment rises 5 degrees a day. The rate of heart attacks triple during a heat wave and a man with my disease who was a few years older died 8 days ago in Seattle. Our anniversary came and went, and we live out of synch, as I catch snatches of time to sleep as able. Often something simple like a drink of water can turn into 90 minutes of ‘too weak’ to drink and 'too hot' for Linda to remember, and once awake, too much pain to sleep. If I had known I would be heat intolerant, perhaps a plan for a different anniversary.

Wednesday, August 15, 2012

Post Olympics: reading, writing, watching, thinking.

The Olympics is over: I have three extra hours a day. Too bad another heat wave makes those hours heavy with assisted breathing and diminished capacity.

I was glad that Oscar Pistorius was able to be in the 400 semi-finals and the 4X400 finals. I was sad that the IAAF kept his case in limbo in 2008 to stop him from being in the 4X4000 in the 2008 Olympics.

I’ve been able to send out 16 postcards over two weeks. Reaching out to friends is important. In Japan, they send postcards at New Years (a hello and chance to win prizes, as the post office puts numbers on the post cards) and at the end of Summer in order to ask how people are doing. Not a bad tradition.

I’ve been watching Nordic Noir like Those who Kill and The Bridge and reading Welsh anthro books and Japanese ‘light novels’ series like Keili and ‘Book Girl and the…’ by Mizuki Nomura. The 'book girl' series is about a high school 16 year old boy Inoue, who joins the ‘literature club’ with 18 year old avid reader ‘book girl’ Tohko. Nanese, a girl from Inoue’s class who secretly loves him makes the third arm of the triangle. Each person has a secret, and each book is based and progresses along the lines of a book; which is also explored along with the author and inspiration of the work.
Book Girl and the Corrupted Angelis based on Phantom of the Opera, as a friend of Nanese, who goes to Music school, has disappeared. She asks Inoue to help her, but the only clues are that the girl suddenly got better at music and refers to her secret teacher as her ‘Angel of Music.’

This series is about the creation, inspiration, interpretation and effect of literature, as well as a generally overall good mystery, with the human mess that goes with finding out secrets. Our point of view narrator, Inoue, had a best friend Mui in what would be Junior High. Her dream was to be a writer, and win a literature contest. She was working on a novel, but unknown to her, so was her ‘best friend and fan’ Inoue. He submitted it and it was HIS novel, with the convincing junior high school girl’s point of view which was unanimously selected and his pen name, Mui, was touted as a 14 year old genius. People still ask, ‘Where is she?’ but don’t realize that his friend Mui leapt off the top of the school while looking at his face, and saying one sentence which has paralyzed him since. He writes only because Tohko, president of the club, EATS the stories he writes, and demands that he must write for her as she is hungry. Is she a wacko, a demon or a bit of both? A definite recommend for book lovers, or goths.

BBC America, which usually shows BBC UK shows has created one of their own called Copper. It is about a detective in 1880’s New York, a ‘copper’ in the down and dirty section of New York, the ‘five points.’ It looks a bit like Murdock Mysteries (cancelled after four seasons by the independent producer, but picked up for a fifth season by CBC with ITV) as Copper has the protagonist as outside, allied with a minority doctor/pathologist. But as it is a US cable show, down and dirty politics, racism, lots of hetero sex and illegal violence occur. Odd how Murdock Mysteries is the mirror of the uptight, ‘is this best for all’, white male voice of Canada while Copper is the mirror of the ‘tame the wild’, independent spirit with an overt need for sex American. The premier is on August 18th, check out the trailer
HERE, but don’t expect this copper to be giving cautions for littering or needing a bottle of Absinthe in order to kiss a girl (Murdock Mystery references).

Over in the UK, the band Mumford and Sons are releasing a new album next month, and have put out a new song and video titled 'I will wait' for you to listen and watch. Thankfully the folk core of Mumford remains, and anticipating the new album. Have a listen

Russell T. Davies, a welsh lad from Swansea is known as the producer and writer for Doctor Who, Torchwood and before that Queer as Folk. He left Doctor Who in 2010 and I have been watching some Doctor Who series and episodes, both the ones by Davies and the ones by Steven Moffat, who wrote some of the better shows in the Doctor Who series, like BLINK, which featured the weeping angels. Moffat is now the writer and producer of Doctor Who, the sixth and seventh season. As I am writing, which is why I am reading and watching things widely, I was trying to work out why I find season six and seven and the new Doctor completely un-watchable: my ‘bad writing/acting’ detector going at full alarm. Why?

Someone wrote that for Davies, the Doctor Who story isn’t science fiction but a Monster/Horror show that children/the whole family can watch, and it went ‘Bing!’ with a ‘Why didn’t I say that?’ While to my observation Steven Moffat has turned Doctor Who into a sitcom, something on par with later seasons of Big Bang, with the ‘quirky genius’ showing off in an over the top annoying way combined with keeping secrets because no one can understand. The rest of the core cast remain, even if that means they die, or end up in a rift in time to never have existed at all. Like any good sitcom, there is always a ‘Presto!’ Greek drama style ending where God/Doctor arrives and sets all to right, even if one character has to end up as a machine, or someone 3000 years in the future ends up the older adult child of parents from 2011. Do you care? Well, I am sure Sheldon would be happy to know he is Doctor Who, but other than that, no, I care more for the guilt ridden boy Inoue who can’t speak his shame of being this missing genius 14 female writer than this.

What the ‘new’ S.M. Doctor Who lacks is the mess which comes with people (or empathy). In the original reboot of Doctor Who, Rose takes off for a few trips then comes back, only a few hours later, according to the Doctor. Only when he sees the posters for her missing does the Doctor realize he got the date wrong by 12 months, and ends up with a wallop round the face from Rose’s mother (who after living on an estate, doesn't take any guff). Messy. But then, that’s why the old Doctor, a PTSD survivor of a war, who feared becoming the emotionally distant and uncaring lords he grew up with, has a human female along. The asexual Doctor Who needs to be reminded of the emotions he has had seared away which is why he apologizes, “Sorry, I’m so sorry…” The new doctor is too busy flirting or treating women companions like china dolls to care who lives or dies. Sure, Davies tended toward the maudlin, and had over the top lines and shows a plenty. But his companions come back to minimum wage jobs or welfare, or unresolved family issues just like the rest of us.

Russell Davies stopped making Doctor Who because his partner Andrew Smith was diagnosed with brain cancer, and he had the financial means to be with him. So the Omnisexual Capt Jack Harkness of Torchwood is put on hold so Davies can be the supporting cast for the unknown hero, who after an operation, 30 days of radiation and six months of chemo may be facing it all over again or dying.

As a writer, I would rather risk big, write big, and include the mess, which makes people cry, or turn away in embarrassment, than use a formula that makes good plots but ‘same old’ stories.

Thursday, August 09, 2012

Fatigue, illness and falling out of time

I’ve convinced myself somehow that the personal is less important than the political. Or rather, tht which worries me is not something which will worry you, as our conditions are different, and if I can’t make it universal, I try to ignore it. Not so.

On the personal level, I have been losing a lot of blood, a large amount with signs of internal bleeding every few days. My inability to create blood is probably what causes the waves of weakness and passing out. I am in fear, so often that I will lie down to nap and wake 18, 24 or 48 hours later. I worry about the effect the heat has in draining me. And about the strain on muscles and whether it is better to take a pain pill and ‘power through’ or don’t and risk fatigue.

Time, and the passing of time is something that is fluid for me. There is no neat 24 hours in a day. What I do, I do slowly, sometimes four times slower than others, sometimes slower than that. And I can do something for an hour or two, and then I need to rest for three or four hours. Able bodied people don’t get it. Rarely do they ‘get’ fatigue, much less passing out, and doing things slower is something to ‘remember’, not something that is lived. I find myself constantly pushed by the expectations of others, whether it is Linda or someone coming to assist in care. The assumption is that I will be well enough to talk, that I will be well enough if I can’t talk to repeat what I said five or six times because they stand and go “What?”

I long for the person who would slow to my time. Someone who would want to spend time as I have to, not as I choose to (and the majority seem to be unable to understand that idea – that I am fatigued, or slow, or pass out not because I want to inconvenience them, but because I have no other choice). There is the ‘I expect you to be at your best’ when the person pops in, there is the ‘I have no idea what condition you will be in, so I’ll hang back” and there is the ‘I’ll come back if you seem too fatigued.” Often the person thinks they are in the same time scale as I am, as they go to reading a book, or doing something on the internet. But those actions are done ‘at speed’ and coming out of that to my speed is often difficult, or that I am ready at 1:00 am meets with, ‘but it’s time to sleep.’ Errr, except I have slept, and have waited two days for you to do xxxxx with me, and now I finally have the energy.

I can understand the whole, ‘Hey this is when I sleep’ thing. But if they choose to not be part of when I am active and alert, then there should be no expectation that when I do go to sleep, after being active until 4:00 am, I will awake with any sort of energy. It is kind of like space and how meteorites don’t have showers through the atmosphere based on the best night for me – they do what they do, and I can join that or not. But to get frustrated because they won’t act according to my wishes, that seems absurd. Yet to expect that very action from people who are experiencing aything from depression to chronic illnesses is almost standard. Areas tend to beat at one pace and everything from the times stores are open to social engagements are built around that. For those who fall out of time, it isn’t that you are watching others pass by, but that others either choose not to or are incapable of synching with you (or me).

Good thing this computer age, so I can leave a thought, and it can be read, or replied to at your own pace.

Friday, August 03, 2012

A sorbet of film to cleanse the Olympic heavy palate

For those tired of the Games, or just the Olympic hoopla or competition between nations using people as pawns, I have two rather obscure film recommendations. With the Olympics, it is odd how close vanity and nationalism can get at times, and how cruel that can be to those involved. Particularly when some poor woman who spent hours a day in training, is crying on live TV, apologizing to all the people watching having just found out she was .01 of a second too slow in the semi-finals to make the finals.

Linda and I had a friend in Wales and she practiced her Judo hours a day, won the national titles, while doing her doctorate. I rooted for Ruta Meilutyte, from the tiny Lithuania, who had just turned 15 before the Olympics.
Her father moved to the UK to get work, and is a disability care attendant. The nation of Lithuania had never gotten an Olympic medal in swimming. Her father gave his ticket to Ruta’s grandmother, who raised her until two years ago when she got a scholarship into a school, Plymouth, for elite swimmers in the UK. Ruta was entered to come to see what international competition was like, was ignored by all the commentators and ended up winning the 100m breaststroke. Joining Ruta's grandmother in the stands was the president of Lithuania. After she won, back home, the local bar named a drink the Ruta, which her brother drank free all night. Ruta won’t be old enough to drink until the next Olympics. Each person has a story, and in the end they are just people. Ruta went out and had ice cream after winning, as for as an elite swimmer pre-tournament, she had not had any for a long time.

On to the films:

The Sound of Noise is a tongue in cheek highly rated and award winning film about a woman, Sanna who leads a musical art movement, which is ‘beyond the law.’ Warnebring is a detective for high profile cases, and a total disappointment to his family of musicians for being tone deaf. Sanna’s friend writes a script using the city as music art and mayhem, six percussionists required. Warnebring is both attracted to the idea of music beyond the structure his family worships (like using medical equipment as instruments), but also desperate to stop them, and just stop the NOISE! It manages to mock avante-guard music while displaying it in a popular medium, as well as the idea of there being music for everyone, even if that happens to be silence. It is two years old, but only premiered in the US a couple months ago. The Sound of Noise DVDout last week.

And for the ‘other Britian’, the urban landscapes and block towers with ‘bad boys’ of age nine trying to go around being called Mayhem, there is the film Attack the Block. It is just your typical teenage lads on Guy Fawks, dissing, jacking a woman, and doing a kick down when some thing start coming down instead of up. Yes, Aliens have invaded South London, and knowing that 5-0, the fuzz will charge them with whatever the monsters do, our gang of six lads, two tyke wannabe’s, a nurse, the king pot dealer and his upper middle class client face off the Alien invasion. Having some knowledge of London slang would help (though there is more cockney slang in New Tricks) as this is a typical sentence:‘Yo, dem tings is beyond, bang, bang, bang, believe!’ Though there are subtitles, if you don’t ‘feel it, man.’ By the makers of Shaun of the Dead.

It is a long weekend here in Canada, with a NEW long weekend coming next year, according to Linda the Oracle.