Monday, April 30, 2012

Living day to day, and a del Toro film recommendation

After two weeks, I hoped that things would be better. Currently, Linda has yet to receive any form of transport – the scooter could not hold a charge, and had to be taken away, and while promised a powerchair from QA hospital, that fell through as well with Friday being the day Linda’s staples from her surgery came out, but still no mode of transport. Papers have been sent to Red Cross and they are trying to assemble a power chair to work. Linda’s cast is non-rigid, meaning she can’t put weight on it for the next month. It is day to day.

For me, due to trying to do any and all heavy lifting, by evening I frequently fall, pass out or crawl. For five days now the filters and my kidneys seem to have stopped functioning, leaving urine without colour, protein or waste. I am waiting to find out if this is renal failure, diabetes or something else. It happened last week, then function restored, but after exercising, happened again and stayed that way. I had hoped to ask all to plan a day of fun for the weekend of May 19th/20th as it is not just a birthday but another year survived. I did not expect to survive, and two weeks ago, when I had a high fever and organs shutting down, I thought more than 50% I would not survive more than a day or two. I hope that I will be here to plan some fun for Linda and I, like power wheelchair racing.

Thank you for those who have sent cards to Linda, she greatly appreciates them, and thanks for the socks from down under – the colour and fit are perfect. This last week, VIHA, after sending a letter saying they had never discontinued service, denied any home care. They were requested, after talking to the Ombudsperson office, to answer what was the complaint, who made it,, how to present the other side, who was at the ‘meeting’ where it was discussed and who made the final decision to deny care. In response to an appeal for help to our VIHA case manager, all doctor ordered assistance, known as ‘Task 2’ were removed from my care plan as well as the ability for workers to accompany me outside the house. Indeed, workers have been personally threatened with dismissal for simply helping me get to the library. This means I do all of the small tasks these two weeks alone, without the ability to have someone to carry anything, or to even call for help as needed. Right now, making my bed and washing my dishes along with laundry once a week is all workers are allowed to do.

Since there is no way to find other care, as VIHA stands for Victoria Island Health Authority, which operates all hospitals and anything medical – without any names, or anything even in writing, there is no way to use the VIHA complaint system, and the ombudsman office have fast tracked it.

On the same week, after doing my push-ups, and sit ups, including 11 full body push-ups on my fists, I finished with crunches with my legs over a ledge and me curling up in a sit up, pulling myself off the floor. With 100+ sit-ups and 200 push ups, I relaxed and listened to my music turned up full while the world slipped away: taking a break, slowing down the heart. A YMCA day manager who was working out took this as distress, I opened my eyes to find the first aider and him beside me – I gestured to then found the cold pack, asked for helping breaking it, but as I was lying on the ground and my diaphram just had a extreme work-out, it took too long to get the words out and I tried to pantomime. This failing, I did it myself and applied it to my core, to cool me down. The manager had introduced himself as ‘I’m not on duty, and I’m just working out, but I’m not on duty’, so I explained what my exercise program was to the first aider, a female, who was the on-duty manager. However, the male off duty manager kept interrupting or simply talking over me. He said that I could not remain at the Y that day, and must come back the next to work out.  If there was any fainting it would be result of anemia I have had since 15.  However, this was more like 'fading', like after doing an all out run, when you lie there trying to catch breath, the world distant and the lungs and heart close: to ban me for this state seemed extreme and I asked him to please show it to me in writing. That asking was not received well.  I don't understand why 'can I see that in writing' are the most hated words in Canada?


He left, and I made an arrangement with the on duty manager to use one machine for a few minutes then use the recumbent cycles, as with the arm rests and seated position with the legs held by foot bands, it was safer than a wheelchair. During the exercise, the male off duty manager appeared to tell me he had called, at 10 pm, the head of the YMCA, and that my account was now barred until I saw him. I asked to speak to this person he called but said that was impossible, and then talked over me to tell me that ‘this is how things are, I don’t care if you like it or not, it is simply how it is.’

For me, it rounded out a crappy week. I spent some time explaining that for an organization and individual who threw around the word ‘liability’ (I offered to sign a waiver), he didn’t seem to understand that the more he touched, moved me, and demanded I obey his commands, despite his first sentence being, ‘I am off duty and working out, not here as an employee of the Y’ he made himself personally liable, much like an off duty fire fighter running into a burning building, not allowing the crew there to work as he ordered people in the building to do this or that. By interrupting and blocking my communication to the on-duty manager and first aider, he made himself liable, except that when contacting the head, and blocking my account, now the Y and he have broken a contract. I called the next day, several times and another worker told me to not come to the Y as the head would not see me, nor would he return calls neither was I ‘allowed’ to come to the Y on Friday, except for a message that I was to appear as was Linda on the morning of Monday. Since Linda has no transport, and no way to go beyond a few feet with crutches, that is impossible.


It really hasn’t been a good week, and the end of a rather shitty year. After dozens, perhaps over 100 applications, Linda still has not a permanent job, but rather one where she is paid daily. And that work is coming to an end. When the government did a mass hire looking to train up managers and supervisors in another department, hiring over a dozen people in one go, she was not selected. Every time she gets shortlisted, she has ‘assignments’ to do in order to move from the long list to the short list, and then given larger ‘assignments’ taking about 15-20 hours before the interview. She keeps getting long listed, or short listed, only to be told at the end of the day that it went to someone in that department, or it had already been determined before she went in.

All my life, I have believed that if you are honest, caring, and polite, giving respect to others and taking personal responsibility, that these qualities would be valued. There is not one employer of Linda’s who hasn’t held her at the example of the department, the best of the best, yet for two years, we still have no security and Linda has to continue to work each day to make rent. VIHA and my manager, instead of improving the quality of life, or even keeping things as they were have in the last six months steadily made life more difficult for both of us. The Y, for the past several years has put inequal restrictions on me, that while I am a paid subscriber, I cannot do drop in courses or any course without the approval first of the male Athletic director. I have asked twice and been refused to join the fitness course for those post heart attacts, with bypasses, valves and other heart issues; I have been refused to be allowed to join those with cancer, or the programs for those recovering from cancer survival; I have asked for a training program to assist my condition, but that also has been refused. I am not allowed to use the steam room or sauna without another person present to ‘assist’ me, and in all things, including having to ask like Oliver Twist for ‘more please’ in order to take any course, and having three courses/drop in’s having instructors/staff so anti-wheelchair that I had to drop them, I have obeyed each restriction. Why does the Y demand medical information, then use it against me, instead of to assist me? Why, when they have doctor’s note after doctor’s note, do they always demand more, and allow less. Is this how all other paying users of the Y are treated? I believe not, and in this last case, I believe that when a male off duty supervisor orders me around, and then goes to the male athletic director and overall director, in order to ban me entirely for…..exercising at the only machines I am allowed, there is a corporate culture of discrimination, which is against the ethos of the Y in general, but then, maybe that is why the web page for Toronto asks and encourages any complaints or suggestions for accessibility issues and the web page for Victoria has no mention of accessibility at all.

I do not believe that, like an 8 year old, any adult, or any male in a position of power expects and believes they should be able to make it so a female with disabilities is required to petition to do what any other Y member can simply join by showing up; that is a culture of double discrimination.


Yes, I get a bit faint or need to rest sometimes when I push myself, just like lots of women with anemia and other similar conditions. Is a ban standard practice? Is it reasonable practice? The same could be asked of VIHA, an organization which, so far, we have only encountered female. Where right now a nurse is ordering a doctor to tell a specialist what to do (they want me to have a full psych eval, by order, but without any promise of care from VIHA resuming if I do – this was determined by a meeting where neither I nor Linda could contribute, and as I haven’t seen my case manager or the RN in almost a year, it is hard to know how they discuss anything, particularly as there is an instruction from me in the file of our GP not to pass ANY information on to VIHA workers without my consent – as medical confidentiality seems an idea they are used to abusing). It seems a world turned upside down when a RN can order a specialist doctor around. This is why my GP was so angry, when I said that I would ask my therapist to do the evaluation because a) I wasn’t doing as ordered in the way I was ordered and b) he demanded to have the notes from my counselor and therapist sent to him. He didn’t get that people go to counseling in order to have a bond of trust with ONE person, not sent to everyone. This province also happens to be one of the few places where notes of therapists can be demanded by lawsuits and other authorities…..which is why most therapists don’t take notes.

So that is the week. Fun for all. I will say, in ending, that Don't Be Afraid of the Dark is a film by the creator of Pan’s Labyrinth, Guillermo del Toro. The artwork is very similar, and Del Toro wanted to remake a TV film which scared him as a child. He is influenced strongly by the welsh author Arthur Machen, and Del Toro spent 15 preparing and getting this film ready. It is, like Cronos or Devil’s Backbone, a horror film with delightful images, and a more complex idea and world than a trailer might suggest. He has also put out an illustrated novel, Guillermo Del Toro: Don't Be Afraid of the Dark: Blackwood's Guide to Dangerous Fairies . Machen like many of the period believed in the idea of an older morality, and that one wishes up the fae or the otherworldly at your own peril, as to them what might be fun or mischief could involve killing you, or worse. Basically, that when dealing with the ancient and unknown, treat it like Pandora’s box: that some things should not be opened.

I go onward knowing only that life with this much uncertainty and prolonged difficulty is hard, but, though I might feel it is somehow all my fault. Because that is what I was taught, by my parents, my wacko religion and our society, but it isn’t. Sometimes bad things happen to decent people, and as frustrating as it is to hear, ‘I’m just following orders’ is the type of mentally in 83% of the population, the Milgrim experiments showed, even when that might involve someone’s death. That doesn’t make what people do right, nor does it absolve them of the choice they make, even when that choice is apathy or indifference, but we go on. I believe that there is an advocate out there, and that with a good job, a health care advocate, our quality of life can be greatly improved. But that doesn’t stop it from sucking right now.

I was able to send out a few postcards, the start of what I hope to be about 200-300. Day by Day, right? Having all my internal organs work would be a good start.

PS: In the 'it never seems to get better' spiral - a) Y too busy to even take much less return a call on the day we were told to come in for a meeting, b) Linda's chair which 'would be ready' last friday, but definately monday was told today, 'No wheelchair, we are putting you on a waiting list' - she was to return to work tomorrow, but has no way to move, plus we still have no way to run errands, even to return library books, c) After I lent funds including drain my emergency and travel savings account, ebay and Amazon problems drained $142 in six days;d) this incurred fees due to not having enough funds, e) lending Linda my walker, and falling down every day or so, or crawling or dragging myself, I was really looking forward to using my walker again - suck!.   It would be great to have some good news instead of 4 types of new bad news when getting up.
This is when someone is supposed to hum, 'don't worry be happy'

Tuesday, April 24, 2012

Taste of Summer; Southland Dairies Part 1

Sipping grape Fanta, it tastes like summer.

Visiting Beacon Hill Park the other day, I saw the Heron circle and land 25 feet up on the fir tree branch, it’s neck and body leaning down to peck at grubs. The squirrels were hyperactive, with nine month old black squirrels chasing each other in spirals up the tree, then down. The winner stood on a branch, waving his tail as wide as possible, marking himself of King of the Hill for a minute. Finally realizing that no one was watching, he scampered off his victory branch, down the tree and over to where the loser was chasing another squirrel.

Short lived victories, and the attention span of an adolescent.

In LA, the Southland, I was always the chasee ('The Cheese Stands Alone'); never saw the point in joining anything that would involve me running that hard just to hurt someone. We had only moved to LA a few weeks before the girl gang in the apartment we lived in took some offense at me or how my mother had spoken to her mother, that sort of thing, and I was running, climbing stairs three at a time, running back and trying to make it home, hoping someone was home to open the door.

Thankfully we moved after some months to a small house east of Pasadena, an area under Latino gangs, but with enough whites that I was bused quite a distance to my school (a policy to ensure racial representation within schools against ‘separate but equal’). My window faced the neighbors, a group of males who had lots of loud booming music. My father complained to them. They laughed. So he called the police and a black and white squad car showed up. I was listening with my window open when the police had left and the music went back up.  My father, returning to let them know he would call the police again, was met with promises of ‘retaliations’ against us. At age 8, I still knew that could mean bullets, or more likely a rock through the window, which would be my window. That threat hung over me for a couple months until they were evicted, due to late rent and the police visit. It was relief. I already had an enemy from someone several houses down who asked to see my scented pens then when they had them, went into their house and closed the door. My mother went and the mom v. mom conflict occurred with my pens back along with insults that we were white trash and to not be seen again, as we were both unwelcome. Scary stand-off but scented stickers and pens were serious business! But since our yard offered a host of delights that was unlikely.

During summer or on weekends our house was the place as it had everything from my detective agency, inspired by reading too much Encyclopedia Brown (I had a card table and a sign, but oddly, while Jr. Brown got cool cases, I just bored); The international lending library with books and stamps of Elizabeth McClung, LA, USA, Earth, Sol, Milky Way; the full musicals by my (‘not out and not GAY, honest’) brother, would ‘stage’ them with the kids on our street; the kids at church and with the girls at Thanksgiving (not me, however, I used the time to use the other families’ lego’s to build a rubberband lego firing gun; we didn’t have lego’s as they a) cost money and b) were inspired by the devil). Also, we would try to catch pigeons with a box, stick and a bit of bird seed, with much debate on who got to hold or pull the string on the stick, and how far to let the pigeon go under the box. Plus, they could use our ‘trail’ up a cement block wall, over a roof to the rails where the trains came to unload lumber to play on the tracks. While I had no ‘friends’ on the street, my brother did allow me to pick ONE song for him to choreograph while we sang it to the tape in a performance for parents. I choose, “One Eye, One Horned Flying Purple People Eater.” He was not impressed. Thankfully it was before puberty when Peter had the ‘everything must be from that FABULOUS Barbara Streisand’ bug hit.

At the same time I was showing OCD ticks, due to stress of having an opaque window inside the shower instead of a solid wall, so the person in the shower was highlighted in opaque, like some film screen to those outside. My father said that as it didn’t face the street it wasn’t a problem. For me, even at eight, knowing that anyone could see my silhouette while I could not see them was giving me nightmares and trembling, envisioning someone coming through the window while I was showering.  It was not a logical fear, but nor was having a window in your shower.

Our street was fortunate in that there were no drive by shootings. It was several years before a new gang, facing 3-1 odds, used drug profits and extreme violence to make National News, changing my life and the Southland forever: The Bloods against the Crips.

(end of part 1 of Southland Dairies)

Saturday, April 21, 2012

Songs and Vid I can't get out of my head: SAIL

Shawna: Hey, do you think we could make rain using a hose duct taped to a pole?

Tessa: I don't know. Let's try it.

(I think having a really good camera, as the colours pop on this better than most pro videos, and good outlining and camera work is important).  The duo are currently touring Canada I think doing a comedy sketch.  Go youtube!  (bottom teeth with girls means aggression; add black wet hair, red, red lips= sexy aggresion and/or crazy girlfriend)

Friday, April 20, 2012

embers and ashes, plus things that I'd miss

On the weekend, I could put energy and care so Linda could come home or spend the energy taking care of myself (the cough, fever, fluids). I chose the former, on the hopes that she would get some workers to care for me.


I had a fever, and fluid building in my lungs. It was a fever which would not break, and high at night, going day after day. What worried me most was that I stopped peeing, and then, later, days later, what little I peed only came out clear, whether I had eaten and drunken or not.


I was up on Wednesday, and ate, but the pee was still clear, but the fever finally broke, which as it was around 103, was a relief. I slept, for 36 hours, able only to sip a little water, a couple times. I have burned my enercise and reserve of the reserve away. I am living off of what is under the cushioins of the couch and below the seat in the car.  It is all embers and ashes of embers to fire me now.


Linda was using my walker, but has one to fit her, and soon a scooter, for her to go and get groceries. Her boss said she could work at home, but the same union which, after a year, has yet to give her 1 hour paid sick leave or holiday said ‘no work without a doctor’s note’. So, once Linda had recovered some days, she took the walker and had to go to get a doctor’s note in a taxi, because if she is NEVER sick we just almost make the rent (but not this month). But after Sakura-con, after costs, after a week ill, after needing a new air con but the money comes from the Tax Refund, which has yet to be finished…..

However, the time in hospital, the operations were free - they would not release her however until she could demonstrate she had the medical equipment bought to care for herself.  If she didn't have the money to buy.....we don't know, but that's where our medical emporium apartment comes in handy.
 The worst week is over for her, and things will get better bit by bit until they are normal. And she is learning that three, five or ten transfers isn’t quite the same as ‘not having done anything’ but leaves her tired, aching and like other newly disabled. She doesn’t have the upper body strength to use the equipment to the fullest, but that will improve.


I’m moving less and less, as I bottomed out to get the place ready for Linda, and am changing my sleep until the air con is in, as there is no emergency space to sleep in. But with my body too weak to even produce urine for six days, and having eaten perhaps 25 meals in the last 20 days, it may take a great deal of time to build reserves. If only time was something I had, with the dizzyiness for a couple weeks and checking for loss of spinal fluid. Too tired to talk, to exhausted and unable to swallow, the sleep of eternal dreaming doesn’t sound so bad.


Still, there are a few things I’ll miss:


*Reading an intelligent story, or line: “I believe that ‘if we are made in God’s image’ then perhaps we have all degenerated from the petri dish”
*The viewpoint of Clint Eastwood; that life is more harsh than we wish it to be but better, the more we connect, and care, about each other
*The mind of Almodovar
*The Classroom: a profession unchanged in over 3,000 years Never being here to catch up to others or others to me.
*Still missing several pieces of the big picture
*Sunshine
*Venice and old Italian Grandmothers in black shawls selling switchblades
*The good ole action film, whether it is John McCain and a donut eating police man or Ripley and her flamethrower.
*Realizing…….
*Enjoying the difference in levels between the BBC (People aren’t bad exactly) and HBO (There are no heroes). And how the BBC takes some of the cheesiest lines written to human kind and somehow manages to pull it off (Being Human Season 1 for example).
*Helping Linda
*Dreaming when it isn’t a nightmare
*Those books I bought to read, ‘In case there isn’t anything else good’
*The strength to write better than the dreck that seems thigh deep.
*Finding or Talking to someone who knows some things I know, and enough history for a good conversation.
*Defeating giants, protecting the princesses and princes, rescuing the downtrodden, living life by a code or ethos, rather than by the most convenient path.
*Doing sports, and learning how to fly a glider in real life.


Sunday, April 15, 2012

Linda's multiple breaks and Hospital Stay: the Update

Linda’s operation was for last night, but then they delayed it at the last minute. She will have it today sometime and then I hope she will be able to come home soon. I still can’t get over two ambulance buses not having a single splint between them for a break that is one of the most common.

She was on her haunches and fell back and sideways, twisting her leg and breaking it and one small bone in her ankle. I had been getting stuff for Linda in ER, and was trying to convince J., who Linda called to watch me to take it to her at 6:00 am or so. But between the dizzy and a seizure, I wasn't able to move from the floor. J. said they would go once 'you are okay.'

"'s, 'kay" I slurred giving them a thumbs up.

"Really?"

"Yup....I'm enjoying the carpet." I dragged the back of my hand over it, "mmmmmmm...."

My explaining of how we don't appreciate our carpet foot by foot enough, along with the molding, was interupted by my passing out. This did not convince J. of my good health, while attempts to explain how I was feeling it against my cheek with my nerve dead tongue were met with amused laughter. The fatigue and stress must have helped induce the seizure cycle which had her call the ambulance after two clonic/tonics and a mixed seizure. To me, this was only delaying the important things: getting water, her solitare game, earplugs and more to Linda. As I tried to convince her that this was a daily occurance, J. said she was glad that I had the poster up from the Society saying that if I have more than two or stop breathing for extended periods to call.

"Where's that poster?" I was looking around, to pull it down, but that made me dizzy and I fell flat on my face again.

Once I convinced the second crew of medics who followed up after the EMT's that all was as good as it was going to get, I was in the wheelchair, and Linda got her book, her water and phone, when she wakes between morphine naps.

Right now, I have a fever and am sort of hanging on, trying to get enough sleep to get better and not much use to anyone, even myself. Thankfully Cheryl is staying an extra night or I would not know how to get Linda home from the Hospital. Cheryl was able to change my patches, though we are constantly asking ‘Where is this?’ or ‘Where is that?’ and the answers is ‘only Linda knows.’

Everything seems so trivial before, but with life getting even harder, with both of us in pain the next month and a half, I don’t know how it is going to work. Linda won’t be able to even support my head, for when I get dizzy, and I won’t be able to support her – and she will need to lie on her back so that her leg is elevated….except that isn’t her usual style. Best to just take each day, each 10 minutes as they come. There is a scooter rental, and I would have had the funds, but used them to help Linda and to get some stuff at Sakura-con.

I’ll need to find her Teva sandals for her walking about. Times like these when friends and family matter the most. Getting or returning books for Linda to read or films to watch from the Library will be difficult, but just one of what I expect will be a long list of things we will find difficult to almost impossible. We are hoping Rehab is paid for by the hospital, else we can’t afford it and Linda needs it, as this is the same break which stopped her mom from hiking or walking far ever again.

Once I know when the operation will occur and when she will come home, I will let you know.

Saturday, April 14, 2012

Linda Hospitalized: BAD NEWS

Linda and I were sorting stamps to go to a Stamp Faire on Saturday when Linda, on her haunches, fell backwards and sideways.

I called 911 and got her a pain pill. She is in the hospital as her tibia was broken in two places and the second bone broken in one. She has already had one operation and is waiting for another.

Her driving leg is the one that broke. Though she has worked a year, it is still a temp position and she gets no sick days, no time off and finds out next week how long she will have the job. We talked about the stress of that yesterday, but trying to figure out how to do all she does with a cast….

I put $25 in her pocket before the EMT’s came, so if it wasn’t major, she would have a way to get home. The EMT’s scoffed when she was telling them that she had more bone than she should, and it was sticking out in the skin.

I was organizing a package for her, of cookies, water bottle, and keys to get in, when I had a series of seizures. The person Linda had called to come help me called 911, and it took 45 minutes to be able to talk enough to convince the EMT/Medics to leave. That’s when Linda called with the news. We organized what she needed, so far, and hope that she will be discharged today or early tomorrow.

Elizabeth: “But how are you going to move around?”

Linda: “I guess I’ll use the indoor wheelchair.”

Elizabeth: “If the cast is firm you can use the walker.”

Linda: “Well, we are at least medically prepared.”

As it is, neither of us know how we will get back to a 'routine' or what to do, or even what can be done. Darn it.

It would be really nice to have a GOOD surprise in our life.

UPDATE: Linda's leg is set but they need to operate on her ankle, so she is coming home, then going back Sun/Mon for an operation on some small bones in her ankle. It is her driving foot so she NEEDS to get to work but can't drive. The things she could use right now are:

Anyone who can do errands in Victoria
A scooter or power chair which can get her to work for six weeks (fairly close by, just out of range of INDY).
An indoor manual chair for six weeks
Funds to cover her sick days and
Sympathy Cards or Post to:

Linda McClung
#305 - 715 Vancouver Street
Victoria, BC
V8V 3V2
Canada

The challenge for her is not just work but doing the shopping and all the little errands but without a vehicle and without being able to bear weight at all on her leg. Sadly, that takes out bus transit unless we can find a wheelchair, and while Linda can lift, she can't carry at all. But for now, we are going to have a 'Off to have screws and metal plates' party for Linda with Pizza and a movie.

Not only did the EMT's not bring up a rig, or take Linda down in the elevator with her back up, like I have gone many times, but called the fire department and were talking about carrying her down four flights of stairs when she pointed out my manual chair. That worked fine and they brought it back. The chair is a bit small for regular use. But after getting her down in borrowed medical equipment, they didn't have any splints either, so Linda took a pillow off HER bed and they wrapped that around her leg. The hospital didn't have a portable X-ray machine, so she is still waiting for the second X-ray on her leg. It may sound like 1970's or 80's....because I think that is what it is patterned on. But on the bright side, in the UK, a woman I know was waiting nine years for a hip operation, Linda only needs to wait 2-3 days for an ankle one. But you see why she needs some cards please, to the address above.

Friday, April 13, 2012

Accidents Happen

He asks me, “Do you want to go down first?” I nod and he wheels me to the ramp off the ferry. As the crowd parts with him yelling, “Wheelchair, clear the way, wheelchair” I say to him, “A wheelchair: the way to travel inconspicuously.”

As the gangplank is raised, then lowered, it makes a long down ramp before it turns, a barrier of wood before a wooden walkway where people can line up waiting for customs.

Crewhand #1: “Are you taking her down?”

Crewhand #2: “Okay, sure”

I wheel forward, flip the casters up the ramp.

Crewman #2: “How much help do you need.”

“I’m okay on the flat” I tell him, inching up the uphill, “But I need help going down.” I have reached the top of the ramp and have my hands lightly on the wheels. I don’t want to use them to brake too much, in case my fingers curl under without me noticing and get broken.

As I accelerate down the slope, I’m laughing. It is a sunny day and the crewman is going fast. The 90 degree turn comes up, where it gets the steepest, connecting to the long sloping line down to customs. There is a wooden wall, in front.

“I wonder when he is going to make the turn?” I think, as I pull my hands free of the wheels, the slope is 25 degrees or more and he will need to pull it sharply to make the tight corner. “Wow, he must be strong, because he sure is putting the speed on,” I think and I laugh, with that light feeling of being on a ride, having fun.

And then my legs crash into the wall.

The chair, weighed down with bottles of water, gatorade, my backpack and the oxygen still rises into the air, using the impact of my legs as a pivot.

I’m embarrassed, and I’m laughing. I’m laughing too much. When in extreme pain, I laugh, the times I don’t scream.

The first crewman has caught up with us. “This time,” he tells the second crewman, “Hold on to the handles. I don’t think even she could survive the next incline.”

The next incline is very long, and lets you build los of speed. Crewman 2 holds on, but I can’t stop laughing the whole time.

When Linda picks me up, I tell her that the chair got away on them and crashed into the wall.

“That’s going to mess them up.” She says.

“Yeah, and I was hoping to exercise too.” And then it is dropped because between getting the van on the boat and getting off, our passports have gone missing.

We find them finally in the oxygen bag, but end up at the back of the customs line. “No, no.” I say to Linda, “The back is where they stop people. Look at the guy ahead, he’s been talking for 10 minutes already. Remember, don’t use the word manga. We were just at a fashion show. There were some concerts.”

“Don’t say concerts.” Linda replies immediately. The last time we went through and said ‘festival’ they searched us for pot. And this time we were carrying some; the spray to relax my muscles before sleep.

There are three booths and the Canadian Customs officer in the one to the right of us has taken the driver inside. They are searching the vehicle to the left of us. We roll forward. It’s a guy, thank goodness. He asks where we were, and if it was for business or for pleasure. Linda answers because I am thinking, “Don’t tell them about the cheese.”

US customs officers ask if you have drugs, or weapons, while Canadian customs officers ask, if you are returning home, how much liquor and how much cheese you have. We bought a LOT of cheese.

He asks us about the liquor. We tell him about the bottle of rum and triple sec.

Officer: “What are some of the big ticket items you bought?”

Me: “Make up!” (I had bought a new lipstick from Lancombe and my goodness was it expensive: cost more than the manga we bought on the last day…..well almost more. Don’t think about the manga: last week a guy on a ferry from Seattle to Victoria was arrested for having ‘child porn’ and animation on his Ipad).

Linda: “And I got some slacks!”

The light in the customs officer eyes goes out as the sheer and total boredom of him looking through our make up and clothes purchases flickers across his brain. “Have a good day.” he says and we are gone.

That night, I fall, my PJ bottoms caught in the wheel of the walker, and I land badly on my leg, shoulder and opposing hand. I go to sleep with my leg up on pillow. Maybe the spasm in my leg was from going for a wheelchair toboggan ride down a slope and into a wall. Dunno. Pain makes the head go funny.

Tomorrow I’ll put up the pictures of me dressed as a Shrine Maiden.

Thursday, April 12, 2012

When things are 'unfortunate'

I took my trip and travel sure is fun. It is almost so fun that it seems like the daily problems are gone. They aren’t. But it can seem like it for a while.

Today, because while I slept, no one could count higher than 20, I had just begun to wake when the spasms hit. I screamed so hard and loud that I stripped my voice in less than a minute. Linda looked at me, while I begged, holding on, “MY LEG..” She got up, then looking back decided not to walk out and help massage the leg. That tipped me over into passing out and when I came to my leg hurt enough for the throbbing to bring tears to my eyes.

The pain doesn’t make it so I scream. I scream because there isn’t anything else possible. Like an long handled axe falling, the noise is pulled out of me, as fast as can be.

Of course, that happened while away too; because out of Cheryl, Linda and I, the group of us couldn’t count to three, and so more than three days went past since putting on the Fentenyl Patches. And when the pain of them ran out, that was a lot of screaming. Linda was out at the Con taking pictures and Cheryl said she watched for a time then closed the door and left me screaming and squirming.

I am not sure what it is called when people do the same actions and expect different results. But that is those ‘Patches’ and the last year. At first Linda put up a white board, ‘So it can never happen again’ ‘Cept after the first time, she forgot to put up when she had changed them, or when they were to be changed. And it was every week I was grinding my teeth in pain. Then it was a couple times a week and the pain was so much, I couldn’t grind my lips anymore, or they would crack in two.

It isn’t like I didn’t try to brainstorm. For example, Linda’s watch alarm goes off each day when the patches are to be changed, as does mine. But it is easy to learn to ignore them, to the point that often Linda doesn’t even hear hers. There was the white board. There was me trying to do it all by myself. There was me changing it to every three days instead of two, which helped for a bit But with sleep, strokes and seizures, I am never quite sure when ‘now’ is exactly, much less when patches were last put on.

I asked VIHA if they would come and do it, but no, they often get it within a day of your needs. Which is like someone telling you while parallel parking that they get within ‘five feet’ of the front or back of the space.

Linda once told me after she missed the day to change patches for four times in a row that if I wasn’t available the minute her alarm went off, or I seemed busy she would decide in her head that had chosen to skip 12 hours or a day. I don’t. I don’t think anyone sane would. But then, I rarely get the meds which are for depression, bipolar disorder and OCD. So I don’t know how often I am completely sane. When I asked why I am only getting 50% or 40% of the meds, or miss them for two days, Linda will turn away and walk out of the room, so still curious about that.

Then she told me when angry that she progressed on to where she just gets irritated or angry and then decides that unless I perform some sort of supplication, to her that is me choosing to go without pain control. That was when I tried to find a non-profit group to take over care giving. But I am under 65, so there isn’t one.

I just know that I missed the patches during the Con because I missed going because the pain built and built until I was screaming. I miss at least 3 days a week because I am screaming (which is why I tried to limit it to JUST the patches and spinal pain meds, not the extra diluid, but still 3 days a week screaming: it makes me hoarse a lot).. And so a great deal of the time, I have the shakes or am paralyzed. Like today, when I went to push the medical alert line, only to find that it was up in Duncan, Linda having driven it up there. As I was in Victoria, that was….unfortunate.

‘unfortunate’: those are the kind of words people use to tell you how you are supposed to be feeling about the cancer you have, and the treatment. But somehow ‘unfortunate’ doesn’t seem to have the oomph to explain the feeling of having doctors describe how they plan to bring you to nearly the point of death over and over again. And no, they aren’t about to go, “Gottcha!” And if you ask the percentage, you remember than they are telling you the NORTH AMERICAN chances of your survival, not how they are doing this year. So they might have killed 60% of the patients with your cancer, but tell you that you have a 70% chance of success. Try not to think about it. Another feeling you can label as ‘unfortunate.’

Linda has a lot to remember. But at some point, and in many ways, in parts of life already passed, someone will need to be able to make care decisions, not with a 40-65% of accuracy but full time. And when the person in your life says, ‘That needs to be you’ even when you are unconscious more and more, there is only one feeling: terror.

‘Please call these people’ I say to Linda, pointing to a number, ‘and if they do nothing, try them, or them’ And when I wake screaming a day and a half later I ask, with an intensity which is likely scary, ‘Why didn’t you call them?’ And the answer is a shrug or walking off: feeling of terror.

I’d love to believe that the life of pain, of suffering has a solution, or many. But right now, doing operations on myself with a mirror isn't a miracle, it means it is Tuesday....or Thursday. And most of what is left are screams and the other darkness of life which is ripped right out of me until the ‘me’ which just wants a friend is the shadow, blotted out by the minutes and days of ‘unfortunate’

Monday, April 09, 2012

Sakura-con 2012: steampunk, furry, goth, cosplay & crossplay

Here is a small taste of Sakura-con 2012. The themes this year included several ‘teas’, both for the lolita’s (goth loli’s and sweet loli’s) as well as ones for those into steampunk (one Friday and Saturday). The anime series promoted was Fate/Zero and they had they editor and design team there to talk about it. Mana from Mois du Moi (which used to be Malice Mizer) had a huge following as did the three designers which came from Japan, including h.NAOTO, who made the featherwing bag I use for my wheelchair (also the Hello kitty goth loli camera bag).

They redesigned much of Sakura-con and some of that worked and some did not. The Exhibitors Art, which you could buy, bid on with a handwritten bid or buy at the Sunday Auction at 1-3 was moved from across from the Exhibitors hall to a side room, off a side hall, at the end of the street long hall, on a floor where no events occurred. We went on Sunday to be told ‘closed’ – but of what I saw, I think the artists took a huge ‘bath’ (lost money) as there was no access.

The ‘Artist Alley’ instead of being on another floor was in the expanded Exhibition Hall which had a numbering system for aisles just like Comic-con, and went from 000 to 1000 then four to five more aisles of artist’s alley of self published books and art. Main floor space was $750 a booth. The announcer was talk happy and often warned people a) not to photographer each other, b) not to photograph vendors and c) not to stop. It seemed that Sakura-con had gone corporate and lost the fan fun. But it turns out that the previous week, at Emerald-Con, in the same space, the fire marshal had CLOSED the hall, as people were not moving.

I was exhausted and took much longer to recover than expected so I missed much of the Con, but on Sunday most people came in a costume of SOME kind, and while the planning was horrid (for example, the major fashion Lolita show DURING the Grand Ball, which also overlapped showing two of the movies), most people were enjoying themselves.

Here is the youngest cosplayer I saw, Vash from Trigun at under 1 year of age (his father was Vash as well).

The steampunk ranged from this man who was a traveler of the wastelands, with his leather coat and his self mechanized earth-striders (I have a video of him jumping around at least 10+ feet tall, very impressive) to a ‘Dapper Man’ with his waistcoat and mechanized arm.
Of course, with sky brigands no steampunk or Ghibli film would be complete, and straight from the skies of Laputa, here are two female pirates, including one with a hefty ring of keys (no doubt for cells in her sky ship to kidnap and ransom aristos). The keys made me wonder where my grandfather’s keys had all gotten to from his old house.

I met Lily from previous Sakura-con’s, who has EDS and spinal degeneration, but makes the disability meet the design, as it were. She got her bag signed by h.NAOTO who made a curve motion and the translator said that she was just the right image (h.NAOTO did a goth loli fashion show which I will post up later).

While Friday was somewhat devoid of crossplay, there was a long crossplay panel on Saturday and by Sunday there were many couples and individuals crossplaying. While his jacket might look hot on her, his corset is a fab colour. The amount of female crossplayers is always large as male protagonists rule anime and all media. While finding good male crossplayers who a) shave the face (so few did), and b) wear something adapted to the body – which is what the panel was to help – is rare. But with a goth and loli theme there were lots of frilly dress, wig and hairpiece; maids and other crossplayers. Female crossplayers tend to take it seriously and thus look seriously hot. It seems guys who want to look seriously hot are fewer in this culture, alas.

A Bride’s Tale, the new series by the writer of Emma, who started the Maid craze in Japan and here, is about a bride from Mongolia joining a new family and learning how to do things in a new way. It is up to vol 3, all in hardcover and inspired several different cosplayers, as it is a look that works whether you are young or old.
Sunday also had more ‘family’ attendance with friends or sisters dressed in these skull goth dresses and cat ears.The Yaoi stall was checking all ID’s, even mine. Though the guys selling Ecchi computer games seemed to not be as vigilant. Cheryl and I got some doujinshi games that were translated into English, one a ‘slice of life’ game where the protagonist learns to be a voice actor along with 7 females, and can end up dating them (with no X-rated endings, thank you). While another was likened to Mass Effect, where the person starts as a female new recruit in the galaxy, but is about connection and interaction building more than battles. I also bought doujinshi from a group representing the top Japanese artists from Range Matura to Dutura. I got a pop-up doujinshi book with pictures from Capura L. to Dutura, including poster, bag, CD and more.

Of course, what would Sakura-con be without some Anthro/furry representation. Indeed, several people including a couple vendors I talked to thought that Sakura-con had so many into Anthro that maybe Sofawolf would have come (a furry/anthro publisher). Alas, they came the week before at Emerald-con.

Time for me to pack and sleep!

Wednesday, April 04, 2012

April 4th: Happy Transgender Children's Day!

Happy April 4! Japan's girls' day is march 3rd, or 3/3 so on 4/4 is Japan’s day for celebrating Transgender children. So I recommend reading your copy of Wandering Son (a hardcover manga series about two MTF and FTM children who become friends, and explore identity and going out public together) today


There are a host of good series including Click Volume 1 , Afterschool Nightmare, My Boyfriend is a Vampire, Your and My Secret, Vampire Game, Saver (FTM) and a host of those tales in manga where our hero’s and heroines know they are not the gender determined at birth, or do not want to present as that.

A day for joy of our transgender children. Those fragile ones who, lets face it, have to fight most of their life just to say ‘I am.’, ‘I exist’, ‘Let me be!’ And who are often bullied, harassed, and in north america commit suicide in alarming percentages.

Canada doesn’t currently have a transgender inclusive Girl Scouts, and several Girl Scout groups pulled out of the organization when it became known they had a transgender inclusive stated ruling. There was even a sad attempt by Girl Scouts to boycott selling and discourage buying of Girl Scout Cookies because SOMEWHERE in the USA a few transgender children were participating as Girl Scouts. I’m not sure that ‘Lead toward intolerance!’ was the best example of the principals of Girl Scouts for those Scouts who started, organized and promoted intolerance with this action. Blah! So let’s celebrate those who are who they are, and be proud of our child, sister, brother, cousin, niece, nephew, friend!
We are off to Sakura-con, only it seems we had a mix up and have no where to stay the night before Sakura-Con (oops), which is a problem, but we ARE packed and have INDY in the van and a few hours sleep. Sakura-con welcomes gender bending cosplay or just gender play.

Like last year, the stall Man in a Dress is in a section for buying wigs, accessories and women’s clothes sized and cut for men.
One of the three bands is the hit Moi Dix Mois with Mana, whose vision of the vocals is “I wanted to paint the world of gothic horror, which is my favorite world view”. This is a visual-kei band, which is how Japan interpreted bands like Kiss, just with corsets, and lots of gender crossplay. Mana also has a design in each issue of Japan’s Gothic and Lolita bible. We have MANY batteries and camera’s are at the ready – with a flex tripod for the arm of indy, so my hands don’t shake.

There are steampunk stalls, lots of online comics from Devil’s Panties, Girl Genius and Airship entertainment as well as furry stalls and lots of furry cosplay too.
Sakura-con allows everyone from kids to grandparents to be anything they can imagine themselves to be, including outfits for all of us I think (??? Wait for postings to find out what!) – if we can find someplace to stay.

We're off! Have a happy Transgender Children day

Tuesday, April 03, 2012

Reflections of a sunset

Here is a picture a Japanese couple took of Linda and I, a week or two ago. I am standing, sort of. And honestly, while being able to stand helps getting pictures, it exhausts me like someone stabbed me and the fire inside is bleeding out.

I am leaving in a day or two to go to Sakura-con. I’ll be using INDY there, as I am too tired to wheel. That was the plan and I was supposed to take several weeks resting. Only that didn’t work out. Beauty treatment on Saturday, but too ill to go, then did some packing Sunday. Late Sunday I got fevered, got irasable and irrational and maybe all three of those go together. But I was very sick and dizzy and thought that ‘this was it’, and gave some goodbye messages.

That wasn’t final goodbye.

But I am still very dizzy and weak. And still leaving in a day (I lost a day or so somewhere).

Funny how I am now walking, of sorts, and standing; yet I am terrified each day in hopes that this is not the day I fall down and the organ failure starts. I don't know the last time I haven't had a daily nose bleed AND seizures AND stroke of some kind. But, if Linda can help us get all the crap into the van (I think we were supposed to be packed yesterday), there is, if I can recover, a possible trip to Olive Garden in the future. It is Linda’s fav resturant, so if you know a coupon, please speak now!

With new management or policies at Sakura-con, I am split between the gothic loli fest, and the fun things like free concerts and the Grand Masq (the h.nauto fashion show is an hour in the MIDDLE of the Grand Ball, on another level, and if you don’t go to that, then I can’t get into the signing – for someone who sleeps and wakes up two days later, this is all a bit overwhelming and seems heavily tilted toward the stable bodied, if not the able bodied). Plus, I can meet with the guests at a opening day meet and greet……for a FEE. I can go to tea and see gothic loli wear……for a fee (and it states that the space is SO limited no dolls will be allowed to attend, so a ‘pack em in’ party?). I have mixed feelings, but I would love some new underwear, I have no melon soda, and haven’t been to a USA store for a year: a hard year. So, here is to hoping I don’t end up in hospital.

Coming home, Linda needs to finish the tax return to get a new air con so that I don’t die the first heat wave, as the air con in the Study was toast two years ago, but it limped on…till Dec, when it died.

I am still selling some region 2 titles as well as some region 1 sets on ebay, and will off and on for the next month (raising funds).

I don’t want to die.

But I want living to be more than this. I would not wish a single day of my life right now on anyone.

I had not seen the sun set for over six months, so I took this, which, like me, is a splash of reflected colour. I am not in any way special, and I have not done anything special. I did nothing you or anyone else could not do. My only value was in reflecting to others that they mattered, and that they were special and capable of starting and doing ideas only limited by their mind; not those limits told to them by outer and inner voices. You are the sunset, in all glory. I hope you don't forget that.

For those who wait as I work to contact, write, send packages, yes, with time and pain it takes to respond and send something just for you, because you are unique, and valuabled: I apologize.

I updated my wishlist. I added some ‘furry’ books, though I could use recommendations. Also some films that had interesting trailers. I will talk to Linda about medical stuff I need; a triangle with a ceiling attachment is one thing for certain. Then I will add that too.

I took over 50 pictures because Linda said that she could never get that pink hue or the true sunset colours in a picture and wanted to. We saw humming birds doing a spring mating ritual in the air between getting the pictures.

This is the Totem pole in the Beacon Hill Park. I needed the walker to get this picture, as I couldn’t get it with the wheelchair. The eagle usually nests in the trees around it but for the last few years has nested closer into the park. This was done by the great grandfather of Jason Hunt, who did the carving Linda has on her wall. Thank you for helping me get that for her birthday.

I am trying to send out 200 invitations by May 15th, to join me in having a good day, a happy day doing something that you would not normally do, in hopes for something special to happen. It is my birthday, and if I reach it, I will do something unusual and hope for something special to happen.

Life should always be about planning surprises and looking forward for special things to happen. My life has been quiet too long because I forgot that, so: 'shame on me!'