Screw Bronze!

The price of holding on: defiance

2012-01-28T07:07:00.000-08:00

I don’t pray for a miracle, but sometimes I pray to die. I never wake except to pain. The limit of my waking is based on how much I can endure, and using the one eye and balance hard won in the gym and nights too painful to sleep, I ignore the bomb in my chest and get from the wheelchair to the toilet.

Do you remember running those sprints in high school? We kept going until everyone had thrown up. The feeling you had when you staggered, in oxygen debt but as fast as you can to ensure you are not last….that is what my heart feels, every beat, hours a day. I clamp down, and just carry on.
Maybe if dying felt good I would let go.

But Death is a bully.

I don’t give in to bullies.

Beat me, suffocate me, hurt till I scream, and I do scream. I wimper, I mewl. Watch the Danse Macabre, when it hurts so bad I can’t help but writhe. I will get up. A new plan, a new attack, a new way forward. I know, as each day I lose, sometimes a little, sometimes too much to say aloud. Why has this disease eaten up our years? I know that I will never win.

Choices made when strong show us at our best, but when it is a person stripped, physically, emotionally and psychologically, that decisions matters. I vow, in all states of body and mind, to choose the best Elizabeth. I will never cede, I will still see it as a choice.

I choose to live today. This is my forever.
Besides, I don’t give in to bullies.

“Shall I tell you what the real evil is? To cringe to the things that are called evils, to surrender to them our freedom, in defiance of which we ought to face any suffering.”
-Seneca

Always a Digger myself, early anarchists, the Diggers of 1649. (click on play to hear the original round song.

'Riding the Toboggan', Anime Hair and polygamy sex

2012-01-24T07:18:00.000-08:00

Fresh powder snow for a week in Victoria. It was snow that was sticky to the point that wheeling was like creating a giant snowball on wheels, perfect for snowman weather. The colder temperatures outside meant I had moderate to severe frostbite indoors, fighting it with heaters, gloves, and watching fingers turning funny colours.

The Coho is in Dry Dock for 12 days or so as the annual fixing of the 50+ year old ferry occurs. Cheryl got a vacation day off to come over so the three of us were able to spend some time having FUN together. We watched an episode of Bones with polygamy of sisters. As one said, ‘We sisters are FAMILY, to be a sister IS to be a wife.’ I looked to Linda and said, ‘Uh, you know how Cheryl is my ‘sister’…”

Linda, “….yes?”

Beth, “But not like...sister/wife, um, having sex...just so you know.”

Linda laughed but said nothing. She can be confusingly random in communication at times.

We watched women’s tennis. We talked. We did a jigsaw puzzle from Hunt, another of the 1/4 inch wood, soy paint for better colour, personally designed Artifact Puzzles. They are large enough to have fun by myself or with friends, and yet small enough that I don’t end up in agony doing them. Plus this puzzle had ‘fantasy’ pieces, like the dragon, Pegasus, and cat.
I was able to have this remission because of exercise on Thursday, which caused some slight pain (no sleep for a night, two nights of hallucinations, and a two series of seizure cycles of partial and clonic tonic (grand mal) seizures which occurred after falling into a light sleep state. This lasted for over an hour and was like being stuck in a clothes washer on spin cycle (eventually the hallucinations mean I find out tomorrow how long I kept going into seizures while asleep). I have been ill for the last weeks/months so that even with only one appointment a week, it was often too much for me, and I would miss it. That's being alive, but sucky. And I didn't want to dump all that on you, so I wrote about what I could, which was often the good films or books that kept me sane for hours at a time.

Thanks to ‘riding the toboggan’, I was able to have a respite of 36-48 hours. I had been constipated, taking everything I could for it with little luck. But after the hours of exercise, a series of cramps started and continued for hours which emptied my intestines completely. That cramping, I call ‘riding the toboggan’ because a toboggan is a piece of wood, plastic or steel where there is a curl and once headed downhill, steering seems to occur by how vigorous you are in screaming.I still end up soaring off of snow bumps and riding over bushes or into trees, but the screaming makes me FEEL like I have control. Either way, once started, all keeps going until it is done!

The strain and lack of sleep produces an effect which makes me look, on some days, like I have Celiac disease, with the sudden puffy face and body. The energy to get decked out in corset and knee high boots would leave me slumped by the bed for hours. Being powerless like this leaves me emotionally vulnerable, as I was able to control weight and appearance to find this ‘end stage’ of the disease takes that away too. “But Beth, you are alive when even the specialists and your palliative doctor expects you to be dead, isn’t that worth it?” I ask and tell myself.

“Maybe, but why can’t I have an end stage where I look ravishing too? I see that in movies all the time!” I demand. Those people in Bucket List or Never Let me Go, who with end stage cancer or mutiple organ removal can still head off on road trips, hikes, sky diving et al. How come they get energy while I get fatigue and puffy?

Thanks to my ‘good day’, I was able to make the second attempt for getting my hair cut and colored. This was important not just to the daily hair tangle struggle from no hair cut in close to a year but the need for Anime Hair. Anime Hair not only makes the world a brighter place (I went out in the sun for the first time in two months, followed by a howler of a storm), but life without anime hair means that a) I am unlikely to find a notebook dropped by the God of Death and use it, or discover that I am a goth-loli angel with a missing memory. Nor b) will I have chances to participate in a historical drama like Morbito: Guardian of the Spirit (with a cool, kick ass spear-woman) or even c) wander into experiences from freelance assassin (Darker than Black) to Goth Loli style detective (Gosick).

Still, off I went, looking haggard and puffy. One advantage of staying alive, plus the exercise to get blood to the scalp (keeping hair alive) is having hair of a decent length. Which is nice, as it gives the workers something to envy and comment on (except the ones who try to end up as my mother, and argue with Linda that I shouldn’t have ‘junk food’, refusing to bring the caffeine I take with a bottle of coke which speeds up my heart enough to stay conscious).
As you can see, by the end of the cut and colour, I was looking a lot less ‘ug’ and a had that devil-may-care grin back into my face. A good haircut really can make a difference.

The positive effects of the Anime Hair had me going home but doing two jigsaw puzzles, and also working through the night to write the two dozen cards for about twenty presents as well as over 25 postcards. I am sorry if your Xmas/Holiday present arrives in the next two weeks. I really had/have been trying very hard to get it done before Xmas/Holiday, but time moves faster than I. With that gust of energy, with help from Linda and Cheryl, I caught up and have, er, most...or at least MANY of the holiday presents sent. For me me, getting the gift, matching it, and writing the card all take determination, pure focus and will power along with energy. It might be a couple weeks late, but what is 20 odd days between friends, eh? Sadly, the styling energy disappeared, but, when it reappears, you know I’ll be back: I’m keeping on with keeping on.

The war on Intersex, transsexual, transgender and gay

2012-01-20T12:18:00.000-08:00

Let me write plainly: we fall victim to a war of fear meant for others. In reading an article in Curve, a lesbian magazine on whether T is included or welcome in LGBT but also reading chats and articles about the proposed cookie bann from the girl scouts over trans girls, I was surprised to find Intersex children and intersex females to be given prominence in both of them.

I fear that already Intersex is the new catchword or idea, as it has shown up in general media from Terry Moore’s Echo to many, many other popular works in the last 18 months. And the problem is that very few people have the slightest idea of the dozen’s of intersex conditions much less what risks, markers or experiences each condition entail. Curve writer calls intersex individuals ‘chromosomal and anatomically diverse’ with a silent ‘challenged’ hanging above. I wish the article in Curve was done to bring education about the intersex individuals people already know, or barbaric ‘standard practices’ in North America, Australia and Europe on par with female genitalia mutilation known as ‘to circumcise.’ But as the article is about the T in LGBT, it is not.

T is itself not understood, even within gay and lesbian groups, even though it was T individuals who started the stonewall riots, and the idea of a collective identity and equality. T can include crossdressing for pleasure, dressing or presenting opposite to birth gender by choice or inclination, a medical condition known as transsexualism, trans which can mean almost as many things as individuals want it to mean, plus gender presentation as art/entertainment/persona such as drag kings and drag queens.

What does that have to do with intersex? Primarily what T or trans has to do with being gay: Only ignorance.

I remembered, while I looked at the pictures in Curve of a street protest walk of lesbians in South Africa, what it was like in the UK. In Victoria, however determined vanilla the inhabitants might want to be, discrimination comes often in subtle harassment, or the loss of certain equalities. In the UK, and we lived in a city which had at least a ‘safe(ish) area’ of two or three blocks, being out was the daily struggle against a population who believed that your right to exist was eliminated if you were out. That my existence, and even more so for out or suspected out gay men, was an actual threat. And you lived knowing that you may be attacked in your house, as several we knew were, may be attacked on the street in daylight, or killed, set on fire, hung, stabbed. I remember the week there was a stabbing of a gay man a day in London. That is just what it was: which is why we met in secret, we went out on valentines to a gay only establishment, etc. While transsexuals, and trans individuals, had a level of concentrated harassment from the entire community where they lived until they often chose to kill themselves. Three hours was the record for one person who came out as trans before being knifed. A local Cardiff trans individual had their home broken into and was attacked by a group. Standard. And as the FBI hate crimes, the book Pink Blood on Canadian Hate Crimes, the work by Arthur Dong on Serial Killers of Gays, and news reports universally indicate, the person harassing, attacking and killing trans individuals always thought they were gay.

Indeed, ‘fag’, ‘homo’, ‘queer’ are often carved into the bodies of killed Trans individuals, or reasons given for why they were killed. Sometimes that is a drag queen, who is tortured for three days being being set on fire, or by a man in NY who chasing after a T female they had been attracted and flirting with, shot them, and while the woman was on the ground, fired into them, reloaded the gun then unloaded it entirely into the woman. Why? Because, as the person said who shot, “I ain’t no fag.” Does the confusion that a woman isn't a gay man stop someone from death or serious injury? No.

As the murder of the transsexual Gwen Araujo in California showed, a jury will not convict of murder if there is sex or sexual attraction of men toward a female (for under the UK law, Gwen could have likely been legally female). The state prosecution (the people who represent the police and state attempting to prove that having four men strangle and smash Gwen in the head with a frying pan, shovel, tin cans until dead was murder) first could not or would not charge murder. Then, when charging murder, the prosecutor said that decisions to flirt, have overt sexual attention or acts between two consenting adults was ‘indefensible’ for Gwen because she was T. The defense said that the four males acted ‘as anyone would’, known as the ‘gay-panic/trans-panic defence’ (now illegal in California…for hate crimes against gay men).

It is clear that T women and trans individuals are being killed because others are worried people will think THEY (the person interacting with a T person) is gay. That is exactly what you will see in the interview of a man who murdered and multilated a trans female in Arthur Dong’s documentary Licenced to Kill. Plus the killer refers to the woman as 'it' (which is not an uncommon slur against T individuals). The Gwen Araujo case showed that a male consenting to Anal sex with a female was okay. But if the medical history or genitalia were suspected, even to hunting and killing that person LATER, as occurred in BC, was ‘involuntary’, 'natural', 'normal.' Yes, 'normal' to kill so someone doesn't think you are gay. Why? Because it is so univerally recognized that people hate gay men. Men don’t want to be thought of as gay so they killed someone who they thought made them look gay. They were ignorant, and someone died.

See, Gwen having sex with a guy is called ‘heterosexual’ as who you have sex with is orientation and whether you see yourself as male, female, androgynous or neuter is gender.

But people get that confused. And people who are the most aggressive to defend their orientation as ‘hetero’ or harass others for not being hetero are also the least likely to be aware or understand such distinctions. So, to them, they are harassing a ‘super-fag’, or ‘super-dyke’ or ‘unnatural being’

Except that it is becoming less acceptable to attack trans individuals in some parts of the US simply for existing. The amount of films where the villian is a cross-dresser, a transsexual or a trans has diminished from the heyday of the 90’s and early 21st century to a thankful rarity (when intersex individual as villian started rising).

So when people can’t ‘get’ trans kids, those who are ‘educated’ bring up intersex kids, pointing out that there are several tens of thousands of girls who have or have had ambiguous genitalia, or are intersex. Sadly, they don’t know enough about intersex conditions or individuals to say much beyond that. And thus individuals are starting to connect trans with intersex. So we have gay men, which is about orientation, and those who hate gay men killing T-individuals, which is about gender, now attacking and villanizing the intersex, which often is more of a medical experience.

In the kind of horrible irony, for the last few decades, gays and lesbians have often been trying to dump the T out of the human rights groups on the basis that ‘everyone hates T people.’ When that hate is more about the perceptions of expression of gay and lesbian identity than understanding and hating people for having a medical condition which requires hormones. Sort of like the two fathers in the same year who was afraid their two year old were not ‘man’ enough, and to avoid them being gay decided to teach them boxing, until they killed them.

South Africa, in the military with aparthied, gays who could not be ‘made straight’ were forced to become transsexual women. Meanwhile, in North America, Michael Bailey (a man who seems obsessed with finding who is and who is not gay in order to, in his own words, ‘fix that in the womb’) puts out a book saying that all transsexual women who live as women are actually gay men (The man who would be Queen, is the book name AND the name of the ‘academic presentation’ he made at over a dozen universities).

So, hate gay men? Attack t-women, so says academic Michael Bailey.

And so Governor Bush did, in Texas, eliminating marriages between transsexuals and non transsexuals. And when he became president, he used federal authority to refuse green cards for legal marriages if one of the individuals was transsexual in their medical history. And other states followed. And when those who advocate that people should be exactly as they were born, like ‘Adam and Eve’ because ‘God doesn’t make mistakes’, people start talking about intersex condition. And remember, what most people know of this is when House, M.D. in season 2 or 3 comes into the father and tells him that he isn’t having incest and rape with his daughter, but rather he’s gay……because his child is intersex.

As so officials, as the Curve article pointed out one case, are eliminating marriages, or rights of those found to be intersex. This is not because they know what intersex means or the various conditions, but simply on the basis that it, like this T and Trans stuff and the whole GAY thing is WRONG. And so, as I watch, and worry about the future of a group which have suffered at the hands of adults and children since a young age, or who only find out about it when something else, like infertility occurs. And there is, at present, no literature in the west to explain.

But Japan does. Japan is obsessed with children, and the same way girls’ day, on the 3rd of March (3/3), and what used to be boys’ day on the 5th of May (5/5 – now ‘children’s day), has included trans children day on the 4th of april, (4/4) and the manga title ‘Wandering Son (available in English now), and the anime of the same name (available at crunchyroll) about a girl who identifies as a boy and a boy who identifies as a girl, and how they progress, in school, in meeting each other, in limited acceptance. Into the Light, now in the 8th volume in english, is about raising an autistic child, so all could understand. And the series IS, for ‘InterSex’ are individual volumes in which a different baby is born with a different intersex condition. In the series readers can see the pressure on the parents for early operations, and the effect for those who have conditions which develop later in life. IS not in english, however I have several of the books in translation and will email the first book to you if you request it on my mpshiel address (mpshiel@hotmail.com) and then the next two after confirmation of getting the first book.

The series is sadly the only functionally plot driven but educational series or book on intersex conditions. I have previously reviewed the two books in the west: Middlesex and Annabel, and shown how not only did both authors NOT do any research but the conditions they present are not intersex, nor realistic of intersex experience.

In a war of ignorance, no one wins. And with each law that passes, whether it is intended towards gays, lesbians, bisexuals, trans, or intersex, any removal of rights is an injustice to us all. Worse when we shoot people for something that is literally encoded into their cells.

In finishing, I have been asked several times why those with intersex conditions don’t like ‘hermaphrodite’ as a term. Beyond that there really aren’t any hermaphrodites in the greek sense, it is the same way gay men don’t like the host of names for them, or how people don’t like to be referred to as ‘white man’s burden’ or ‘Our little brown brothers’, or many other common phrases in the US, Canada, UK, EU, Australia and New Zealand for immigrants from certain regions, or those who were the first nations.

Cell 211, a film beyond 'us' and 'them'

2012-01-16T18:20:00.000-08:00

The film Cell 211is described as a film about a prison riot in a Spanish Prison. But this film, which has won over 25 awards, is so much more as we see how quickly the ‘they’ and ‘us’ divide can be crossed when experiences are shared. The basis is when a new guard, visiting the prison in street clothes the day before starting officially is injured in the ‘secure’ wing and left behind in Cell 211 by the guards giving him the tour. With no ID, and injured, he is assumed to be the ‘new guy’ and brought to the leader of the riot. He teeters between the uncertainty of being a new face but also bonding with the prisoner leader as together they face problems, endure tragedy and swap stories during the waiting and the down times. This film reminds me of Carandiru, a Brazilian film about a true story regarding conditions in a prison in Brazil. Carandiru is from the viewpoint of the one doctor of the prison holding over 7,000 prisoners who tries to being to treat prisoners with humanity but also deal with the rampant AIDS within the walls of the Carandiru prison until when a protest riot breaks out.

Both films shed a light on the complexity, problems and self delusions of prisons. North America, given up on reform, now has the highest per capita prison and felon population in the world. Prisoners, besides being cheap labor from call centers to chain gangs feature often in TV ‘reality’ shows from the point of view of the guards as we see prisoners kept in kennels, beaten, taunted. Many watch as entertainment real people being dehumanized: the 2.5% of the USA population.

Both films show outsiders who end up experiencing the prison from the inmate’s viewpoint and try, experiencing less and less possibilities for any control, to advocate in a system which is both a entrenched bureaucracy AND a dictatorship (of the Prison Warden). A system where individuals have no voice, and it is only AFTER a riot can one side be heard at all. Both films show how those who are supposed to be ‘in charge’ are often reacting instead of acting, and driven by emotion instead of reason. The underlying fear of loss of control increases the reaction of those in change. This escalates into the extreme lengths that the prison system and minister of justice or the interior go to in order to convince themselves that almost any action is right, if it is one that gives them the belief they are in control.

I read a quote that stayed with me: that the guard is as bound to the prisoner as the prisoner is to the guard, neither free. And it seems true, unless you believe that a person can watch or participate with violence, paranoia, abuse of power, and sadism but somehow put that down and walk away from it for an evening before picking it up to wear, along with the body armor the next morning.

Cell 211 and Carandiru both demonstrate the questions we are afraid to ask of ourselves socially and personally. The Russian Film The Way Back(also a 2010/2011 film on a real event and award winner - highly recommended), about prisoners during Stalin in the Sibera camps who escape, planning to walk thousands of miles to freedom, has an answer to the prison/prisoner problem in the title. The man who leads the escape must reunite with his wife, because only then can she know he forgives her. Sadly, we have moved from a system which allows for the possibility of forgiveness: it scoffs at those who would give it to those imprisoned and eliminates the possibility for those who are or have been imprisoned to return to society. When a person is unable to return to the Polis, or the group, they are always an outsider. In North America a person can serve the time, but you are always going to be a prisoner. Though released, n felon often cannot vote in their state, and is rarely allowed a passport. Even if a US felon got a passport, the UK often will deny entry (much like the US policy since 1987 to deny anyone with HIV entry, which is still listed as a reason for denial of entry after Bush removed the law enforcing it).

These films help us, as we empathize and understand the lives of those we have been told are ‘other’ to us, ask what the line should be for a humane detainment. What is the line that allows for detention of those who break the law without crossing over into acts both capricious and cruel, demeaning both those who endures and enacts them? At what point does a prison system stop thinking, treating or believing that those who guard and those detained are in different positions but still equal as human beings? The most common phrase heard about prisoners, in film or life is ‘they’re animals’, yet they are routinely treated in ways which would be illegal to treat animals.

In the film, Cell 211 is empty because the inhabitant, whose head is in so much pain, is medically examined only through the bars, as is routine, and told they have diarrhea. In fact, they have cancer, a tumor which is the size of a Kiwi is cut out of their head post death. The guard, in staring at the graffiti which chronicles the pain and loss of hope of the previous inmate begins to feel more for those he is in with than those watching from the cameras. This along with many acts, including being at the mercy of people who not only have complete control but abuse that power is what changes the viewpoints of the ‘outsiders’ in these films to become ‘insiders’, at least for a time. And in watching them, so we do as well. We can see and understand what it is like to risk your life and another five or ten years in jail just for the promise that your visit every two weeks not be taken away by a guard who has it out for you. Or that you spend weeks in ‘the hole’ where as one prisoner says, “You long for the guard to come and beat you so you have a voice to scream at.”

A friend who taught seventh grade was charged with a sex crime, and sent to jail as a pedophile for six months before the boy, whose mother found his gay magazines, and so to avoid coming out claimed sexual abuse from his gay teacher. He later recanted and though my teacher friend was freed and given his license to teach back, my friend never returned to teaching, nor advocated being out, or spoke up against slurs on others. He had something stolen from him, by this organism of jail, which never came back. And in a system which is meant to do that, to penalize, how could it be otherwise?

The more control is taken away, the more individuals are demonized, the more we become responsible to change a system which we have inherited. It is no accident that Jesus, 2000 years ago, quotes Isaiah, from 1,500 years earlier to say that he was come ‘to set the prisoner free’. Indeed, most Christians might be surprised to read that Jesus said they would be judged on how they treated the prisoner and the other vulnerable in society. If we become like a guard, who advocates human rights for some and not for others, we also are bound to prisoners in the myths we need to tell ourselves in order to continue seeing ourselves as ‘not like them’. Cell 211, The Way Back and Carandiru are all highest recommendation of the deep, pure desire for freedom and dignity. They are inspiring and tragic together; but also a good wake up slap on the face reminding us that survival requires adapting, as does self worth and dignity.

Shame

2012-01-14T23:54:00.000-08:00

From falling down in training, to falling down in a fencing tournament then on to being in a wheelchair and the attempts to find a job (in a country with a 10 time unemployment rate for those in wheelchairs), I felt, through it all, shame.

Shame for every trip to the hospital. Shame for the $60+ for each ambulance trip and $80+ for each EMT call-out. Shame for every afternoon or evening ruined because I couldn’t go out, or worse had heart problems, or a micro stroke (TIA), or seizure cycle. There is the shame for the year and year where Linda was stuck in worse than Limbo, but rather a partner who, after a couple years, it became clear would not get better, and so our relationship, our holding each other up during down times was broken, by me and me alone. No extra odd jobs for me, no more hustling two or three minimum wage jobs to make the rent.

We don’t have euthanasia here nor does the ‘socialized medicine’ cover the costs of medicine, not even close. They cover part of the cost of an air conditioner if you have autonomic failure but not the cost of electricity, or anything else.

I can tell you that 1 in 35 women get MS, or 1 in 750 get MS and probably the stats are less for women who get cancer, and I can’t tell you what others feel but I feel shame. I am EXPECTED to feel shame. An RN comes into my home and walks out without putting on pain medication, indeed, she puts on two patches backward, soaking my top with Fentanyl, but leaves, job undone because as we reduce into the rudeness of undeclared hostility, she sees herself as doing a FAVOR for me, an act of kindess which I MUST act grateful for. That she gets $50,000 and is indeed part of a service industry, that she should be asking ‘how else can I assist?’ and have slogans like ‘we do it the way YOU want’ is ignored because I am a burden.

One of the first things I was told was that I am not craven enough to be disabled. I needed to publicly acknowledge my sub-human status in order to get the largess of care. So my GP calls my questions ‘time wasting’ and me ‘stupid’, ‘idiotic’ and worse. VIHA has in four years, only affirmed, twice, that they discriminate against me due to my disease. And the palliative unit Victoria was, until the late 80’s only used for those with cancer and openly questions if other dying people ‘should be allowed.’ (The answer is yes, but not those who die of old age, only the ‘right type’)

If I did not feel shame, I would be reminded of it at every turn. I am the problem: the doctor says it, the health agency says it, the caregiver groups say it. And if, at first accused, I am not a mental case but someone dying of physical cause, the attitudes do not improve, they get worse. Every appointment I miss, and I have missed and missed and missed appointments. I cannot have aid breathing at night because I missed the oxymeter test, then they were sick, then Xmas holiday, and missed the echocardiogram to determine how much my heart is enlarging as I die, and yet my GP is frustrated that I still live. I hear from Linda that her government boss is pressured to put down how my illness makes Linda a bad worker, the same complaint from 3 years ago, four years ago…

How can I not have blame, and shame for stealing years from Linda. For stealing her ability to smile, or laugh. Hurting her impeccable job performance causes me shame. How many events have I missed due to being ill? How much life do I have now to give? And when are they going to realize that without extra-ordinary circumstances, I don’t know how long it will take to die. But I will only be making less of the lives of those around me.

Maybe it is like when raped or abused, the victim is held up to a viewpoint that it must have happened due to them in SOME way. So there is shame here, as I MUST have been able to prevent it or changed it or made it different or better, or gotten the treatments which would have stabilized it, though I have asked EACH accessible neurologist in Victoria for application of IVIG, and two inaccessible, as well as every other specialist and person with hospital privilege.

I did this. I brought what we all fear and hate, Death, into your life, into your living room.

How can’t I be ashamed.

Voting ends soon for Canadian Blog Awards - spread the word

2012-01-11T23:50:00.000-08:00

Hi everyone, it's Linda here. Beth has had a difficult few days - has been doing the basic necessities just to stay alive. She hopes to be back to blogging soon. In the meantime, I wanted to remind everyone that Beth wrote a post about the Canadian Blogging Awards a couple of weeks ago.

I see what Elizabeth goes through, and tries to put it aside to keep writing. I worry about her. But this is what she wants to do. She wants to make a difference. I see her dizzy, in pain, struggling, and it makes me feel so helpless. She is open, and honest and gets hurt because of it. She is the most caring person I know. She feels and cares more about other people, aches with them, than any other person I know. I see her so weak, so stubborn, she can't lift her head and she's still worried or upset about helping someone else while I am helpless to help her.

The voting goes until January 20th and you only need to vote once. So if you haven't already done so, it would be great if you could vote for Beth's blog in the following categories:

Health

LGBT

Please also spread the word on your blog if you think it is appropriate. She says she doesn't want to win but to know writing about people being equal matters. That's why she writes about the child with autism, and trans kids, caregivers, disability rights, intersex, lesbian lives, about what being ill and helpless feels like. The films and books she reviews are part of that life.

Thanks.

Linda

Sacrifice, love, trans kids and 'Canadian Values'

2012-01-09T20:53:00.000-08:00

In the French Film Of God and Men, a true story set in 1995 Algiers, Trappist monk are told to leave, with militants on one side and French military. Only the the village, Islamic but having grown with them asks that they stay. To do so would likely mean death. “Remember, Love is Eternal Hope”

Others asked, ‘Why did they stay’ a film critic and clergy stated that the action taken was because these Trappist monks did not value THIS life, but looked toward the Salvation beyond.

Bullshit.

Courage is not made with a single act. Courage and love, come from the daily practice of living where one aspires to more than the self, and so when the question of selfless sacrifice occurs, it is an extension of the choices already made. Love and Courage are not monks staying because they want and lust some reward after this life, but an extension of the daily care with the community they bonded with over the years. We hope for it in all who are trusted and entrusted, from parents to police but seeing it, experiencing it is rarer.

CBC’s Passionate Eye shows both the kind of courage which changes a life, and the oppression which requires that kind of courage. Canada is not known internally for liberalism, not when our largest city, in the middle of the country is the most liberal and enshrines the most rights, Toronto. But in regards to transsexual individuals Ontario has an appalling history, where the Premier himself refused, even after a human rights and supreme court ruling against him to fund or let proceed medical operations promised, leaving men and women in legal and medical limbo for years.

For the purpose of the next paragraphs the terminology will be under medical usage, as it involves primarily medical not social aspects. Transsexuals are those who, using the worldwide standard, have a gender identity not compatible with the body. A medical standard of care, now extending down to children involves specialists in endocrinology, specialized psychologists, gender medical specialist and other fields as needed to ensure a match between brain and body. Trans, or transgender, is a term used in North America to refer to a spectrum which can include those who engage in gendered presentation or actions not in accord with perceived birth gender, either temporarily or lifelong. While that can include those who need medical intervention, it can also include those who do not, or those who do drag, either Drag King or Drag Queen, or confronting gender. The program’s narrator mixes the two terms, and also ignores AP and journalism standards by not referring to gender based on presentation by on perceived birth gender (a boy under medical care to ensure a proper male puberty should be referred to as 'he', the CBC doesn't follow this).

What comes through in the program (you can watch it here), some of it taken from other news agencies, is both the uplifting difference that individuals, specifically some medical professionals and parents (mothers) are making not just in the lives of their child, but in setting a standard of care. Sadly what also comes through, in the program creator and interviewers is the intolerance and ignorance in what is played half as ‘fear journalism’ (“This could happen to YOUR family!”) and partly as ‘new trends’ with a lax intolerance. Except of course the medical standard of care is over four generations old, older than the standard of care for epilepsy for example. And has the interviewer asking a boy if ‘they are really commited to being a boy?” “Really?” “Are you sure?” “100%???” Would the journalist ask these questions of anyone else, like a police officer, the Queen, Matt Damon? “Totally sure you think you are an actor?” “100 percent??” “Completely???” “Really, really sure??”

We see a parent/s, a caregiver, the mother, who day by day fought and bore the weight and costs of ensuring a diverse and yet socially gendered tween, puberty and adolescence for their child, or children (that ALL their children have the best lives possible). It is the love, the being there day after day, educating and enriching the lives of those they love which shows the courage of these parents. And the result are centered, confident children who are now teens, who have perhaps more experience with doctors and specialists than other kids that age, but that is about it.

Something like this is still only possible for those in a few cities, and with the right economic status but considering that medically it has been possible for the last 70 years, it has only been the last 15 years that Canada and many countries will even acknowledge that transgender/transsexual children exist, when New York and Toronto opened high schools for LGBTQI teens, the grouping which makes up to 60% of homeless teens and thus high school drop outs. Triangle school in Toronto is currently the only school room for LGBTQI students in Canada. Even though last year, a survey found that it is in elementary school when verbal and physical attacks begin, and by secondary school half are verbally or physically attacked daily, 67% feel unsafe. And while gay marriage is legal, having gay parents leads to verbal, physical and also, for 45% sexual ‘attention’ which is unwanted. This last year, Canada finally admitted that yes, Canada’s schools are homophobic, but only Toronto school board is trying, after the ‘send them to triangle’ for 15 years, to do anything about it. The change in the official curriculum to make schools less trans and homophobic in Toronto lead to a full page ad attacking transsexual, transgender and intersex students in the National just a few months ago. The ad is against the paper’s guidelines and they say they have no idea how it appeared, paid for by the Institute of Canadian Values. It appeared two days later in the Sun.

What the ad and the program have in common is that it is less about the individuals, those children, but the adults and what they find socially acceptable. It is a question of sacrifice: some, like mothers, sacrifice each day for their children, while others are willing to sacrifice children for themselves. This group of ‘Canadian Values’, by including intersex show not a lack of medical knowledge so much as belief that they can require a silencing and elimination of those who already exist, the babies, the children, the teens, the vulnerable in order to have a world that pleases them. Passionate eye, with the ‘it is just a phase’ wording like ‘when she first thought she was male’ invalidates doctors, specialist, parents and the individual. It is a shame that this is the ‘Canadian Values’, but it is not mine.

In Passionate Eye, most of the fathers have left. This is statistically standard. The mothers have had to change schools due to bullying, have confronted principals, teachers, day in and out to try provide the best childhood and thus adulthood for their child. All those interviewed, whether eight year old siblings, parents, friends all use the correct pronouns. Only the narrator ignores the AP rules and with dedicated consistency flashes up pictures (some times VERY early pictures) of the child in the program. The better adjusted the child, the longer we are told about a girl, with a girls name and shown film footage before we finally meet the boy they are supposed to be interviewing. So for Chris, in his mid to older teens, we don’t see him until three film footages of a 2-4 year old presumed girl, an interview with his aunt on his father leaving and why he shouldn’t have been a boy. Finally…we jump from a 2 year old grabbing a Xmas present to a 16 year old teen boy doing weight lifting in the basement.

This program of serious and in-depth journalism has this to describe the program: “What would you do if your young son was desperate to become a girl…..this shocking documentary..” (Shocking? To whom?). “into the world of children who believe they were born the wrong sex. Diagnosed with gender identity disorder, their childhoods include puberty blockers, hormone injections, cross-dressing and a struggle for social acceptance. How far are they willing to go to change their gender?”

The write up reflects a viewpoint in North America (one considered both lacking in medical foundation and harmful to the person from the UK and EU to the ruling of the Imam of Iran), that children are simply ‘confused’ and need therapy and negative reinforcement. They do not advocate gender specialist trained therapists but therapists to bring about gender stereotype conformity. What that conformity is depends on the comfort level of those adults in charge.

When born, there is your gender and your biology (the bits). It can take a few years for the gender of the child to make itself clear as often until the age of 6-7 a significant percent of children can engage in gendered activities other than biological gender. But then, they also will engage in activities of other species, and inanimate objects, like a fire engine. What researchers of brain biology have learned is that post birth, gender in most mammals, and in humans is fixed. Which is why the gender marker on the chromosome is considered the best determination of an individuals gender (this cannot be tested currently, but specialists in interviews and other tests have a 98-99% success rate). This is why the ISNA, and OII recommend, along with most specialist, that intersex babies not have surgery until gender is confirmed. One boy for example, changed from grade 2-4, which is when gender, meeting social expectation and interaction becomes most clear. Typically a boy may like dressing as a princess, but at 6 or 7 will stop, as social cues and group understand has them declare, "I am a boy!" So when someone viewed biologically as a girl is saying, "I am a boy!" at 7 and 8 and 9, that isn't a phase, it is the gender identity making itself known.

Patricia Highsmith for example spent until 19 telling everyone that "I am a male!" Coming from a well to do family, she was forced into a marriage, and tried both being with a female (as a male, in a suit and her trademark hat), then officially married under pressure, but did so to a gay male. Transgender teens, like the rest of the population may be gay or straight, as the gender marker has nothing to do with sexual orientation, thus trans doesn't automatically mean 'not a girl, but a gay boy' as parents or others often assume. Sadly, when Patricia Highsmith lived in the 1930's and 40's, transsexuals and transgender were barely known and never accepted. Pat wrote mysteries including Ripley's Game and The Talented Mr. Ripley, about a person who has to live life pretending to be someone and something they are not.

The show about young trans children is an important and ultimately uplifting topic: that in knowing there are already children with advocates in parents, doctors and principals more transgender and transsexual youth and teens will come out. And hopefully the next generation will be one with hope and a better life, borne from love. And that Canada, and our journalism might grow up. Already the age of coming out for transgender and transsexual individuals isn’t the secret kept until the 50’s but the 20’s. I hope for a future when it is the teen or as early as needed, in a society of acceptance of all diversity. As an nation of immigrants and ‘new starts’, we should lead the way in enshrining legal protection and medical support for transgender and transsexual teens. We don't, but we should.

Caregiving, which by definition is for one of the vulnerable members of society: a child, illness or disability, old age all have the capacity to be daily acts of courage. To set a standard, or as a mother said, she wanted above all to do no harm, and look in that mirror, whether in the silent success or the apologetic failure is an act of courage. It is this daily practice which allows us to become more, and to act not out of self interest but out of love. I am thankful for all those who act as caregivers and advocates, and whose silent sacrifice and courage make better lives. As Mother Theresa said regarding the point of exhausting herself on a dying infant, who would never thank her, never reciprocate, that the child would know that it was loved. It would die, but always knowing it was loved.

I think it is the knowledge that we are loved which allows us, in our vulnerable circumstances, to be brave ourselves and to endure. The 800th day of harrassment and bullying at school doesn’t make it any easier than the days before, nor knowing the violence always there, nor will the 801st day be any easier. In the same way, the fatigue, the pain of a chronic illness eats away at all joy just as much several years later as it did that first year. This is where the love, the caregiving, the knowledge of love without requirement, or condition can make the difference between being coping and moving on and simply waiting and hoping for death at your hand or anothers.

New Year Puzzle Fun, Echo the review and more!

2012-01-04T04:52:00.000-08:00

Always have a back up plan (a second getaway driver doesn’t hurt either): that’s something disability and illness has taught me. I tried to go see Sherlock Holmes Monday but slept the day in order to compensate for loss of sleep due to pain. The kind of boring tedium which makes days disappear faster than you can say “opiate constipation!” haha.

I was to go to the Film today at 6:00 but getting ready took a wee bit longer than planned. But it worked out for the best, as I went in the evening, missing the earlier packed house, to an empty cinema. Linda and I laughed at Stephen Fry stealing every scene he was in, the new ‘urban disguise’ which I can only hope will catch on with children and survivalists alike and the homoerotic banter between Holmes and Watson. It is a good time, and getting out the house was fun, even if it was raining.

New Year’s Day Linda, Cheryl and I tried an Artifact Puzzle. Artifact Puzzle are a Seattle small business by two professors who make jigsaw puzzles out of a quarter inch of hard wood, cut with a laser. They aquire the rights to some facinating puzzles, including this bunny blossoms, which I long for, but as it costs $75, I will simply add it to my wish list. We started with 129 pieces, and after an hour of the three of us working hard, we finished The Garden of Death. Hey, I’m goth and macabre, envy it or get used to it! Workers like my stuff, or to be more accurate, they think their daughters would love my stuff (like when sorting clothes or the skull handkerchiefs my ice packs get wrapped in). It was fun but the unusual cutting of wood shapes along with thicker wood means that a few of the corners are not corners, and some of the puzzles are cut so there are no edge pieces at all (extra challenge score!). While now, the company specializes in designing ‘theme’ pieces, as the Bunny Blossoms has lots of different bunny pieces, while Stalking the Unicorn has myth and magic figures cut out (pictured). The tight fit of the wood in the puzzle means that sometimes trying a piece a few times to get the wood to shift in order to fit in. But once done, as you can see with Garden of Death above, the coated picture has a very high grade finish, good colour, and can be framed or broken up for another rainy day.

I finished the day starting to read Echo: The Complete Edition. It is by Terry Moore and the work he finished this year after Strangers in Paradise. This 600 page book has his black and white 3-D style as well as compelling and smart characters and plot. The planned and completed story arc avoids the repetition in SIP and other work of his and is a bargain at $25 with free shipping. There are very few graphic novels where I HAD to stay up in order to know how things ended, but this was one of them, along with ‘What is in the box?’ (a question you will have once you read Echo). The book has bisexual and lesbian themes, and includes colour covers and other bonuses. Sadly Terry Moore joins the growing group of North American artists who can’t draw a wheelchair to save his life, alas (or a wonderbra).

There is a sense of strange innocence in the book for those who are lesbian or bisexual, which is mildly amusing. I have noticed it in other graphic novels by guys, the few which aren’t all letchery, this alluding without ‘getting’ the whole attraction and how being horny or sexually attracted works between girls. But let’s face it, when most of the ‘western world’ and places like South Africa have legalized same sex marriage, along with two of the largest states in the USA, having girls kissing isn’t the ‘oh so debauched’ fantasy seen from the Matrix to Underworld. It is just….two people who are female expressing how they feel about each other in a public place, much like other married or non married couples.

As for the ‘New Year’, I am sure I will have resolutions, though right now I am working on a Top 10 list first. When surrounded by the ‘health professionals’ who seem to be chanting ‘Die, Die, Die!’ like I am the villaness in a ‘pro-wrestling’ under-card match who has just hit our heroine with a chair while she is dazed on the floor, the whole nature of reality seems skewed. Or that might be the pain. Or both. Simply by writing about the things I see and the conversations I have with VIHA, I have, according to Linda, become a ‘whistle-blower’; with all the fun that entails. Right now, I’d like to go outside when it is sunny, and watch some decent TV during the bad pain times. I had some bad pain times last week and they are not fun. You know, the ones where you slowly curl up, until your forehead touches the desk and people tell you that you are moaning. I had to ask people a couple times to pull me back and then prop the wheelchair so that I was sort of sitting upright or at least had my head up.

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

2011-12-30T09:07:00.000-08:00

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

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

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

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

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

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

Teacher stuffs autistic child in duffel bag, repeatedly.

2011-12-28T09:17:00.000-08:00

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

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

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

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

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

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

Click and hopefully change the world for the better.

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

A time for dancing.

2011-12-25T17:55:00.001-08:00

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

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

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

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

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

Longing: By the Waters of Babylon

2011-12-23T23:57:00.000-08:00

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

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

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

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

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

So, there is no ‘coming home’ for me.

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

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

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

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

Today, we remember, and yearn.

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

2011-12-19T17:21:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2011-12-17T08:06:00.000-08:00

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

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

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

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

So Tracy Chapman.

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

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

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

come out of the morgue

2011-12-16T07:36:00.000-08:00

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

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

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

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

A place in between: the loss at Xmas

2011-12-14T06:54:00.000-08:00

“There’s alive and there’s dead. And there’s a worse place in between em, that I hope you won’t know nothing about”

from award winning period film, Get Low

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

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

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

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

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

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

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

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

2011-12-08T23:28:00.001-08:00

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

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

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

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

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

This little light of mine....

2011-12-06T23:46:00.000-08:00

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

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

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

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

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

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

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

“Quick, quick, bring me a gun!”

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

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

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

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

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

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

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

Beth's World: broken-ness

2011-12-03T07:17:00.000-08:00

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

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

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

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

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

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

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

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

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

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

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

Honor to whom honor is due

2011-11-30T07:17:00.000-08:00

I haven’t had a TV for 15 years now. And I grew up alternating trying to hide a secret that would get my father fired and my family shunned, and hating myself so much I kept trying to kill myself. So I had to examine, re-examine, and fight for every belief I have, including whether being with Linda was selfish or creating a union greater than that of two individuals.

Some things I live by which might seem odd to others:

1) I don’t wear masks. I am the same ill or well, online or in person, in writing or in speaking. The blog is elizabethmcclung.blogspot because that’s my name.

2) Choice is the greatest power, one which we all have. It informs what choices I make. And that includes how I write the blog. That is why I don’t name people on my blog unless they say it is okay or are in an official capacity. If I am arrested by Officer Thomas, I may or may not say who it is, as he is acting as a public official. If I talk to Officer Thomas about gay-bashing and he tells me something I think that he may not want to be on record saying, I will say, ‘An officer..’ so he can CHOOSE if he wants to be public about it or not.

3) I believe people are telling the truth. I believe that about everyone. I don’t have hidden agenda’s, mine are pretty up front. But I don’t assume someone isn’t telling the truth and if I do, I try to contract them to confirm that they aren’t, or why they say what they say.

4) Discrimination is bad. So are hate crimes. If you believe different, well, that’s a choice and maybe one of us will change our minds because…

5) I am positive that I am wrong – somewhere, I am wrong in what I believe. I find where I am wrong all the time, because I look and examine what I believe. When I am wrong to an individual, I try to apologize, and when I am wrong in understanding, I change.

6) Good people exist, and often doing good is hard going. There are good people in the world, and when they are found, I hope I can, in some way, let them know that they make a positive difference.

The Canadian Blog Awards are announced and the way it works is you can vote once a day in each category. I didn’t choose the system, but I thought I would let you know about it so you can vote to help people who write blogs have some new readers, and some recognition if they become a finalist.

Like the ‘Blogs I read’ on the side, I have only a few blogs because a) I actually read these blogs, like I said and b) I am ill, so I don’t have the energy to read lots.

Here is the list of finalists. I happen to be nominated in a couple categories: (click the word to vote, if you want to vote more than once, you can click it each day).
voting list here: Best Culture and Literature, Best Feminism, Best Personal, Best GBLT (I prefer: LGBTQI), Best Health, Best Overall.

Sheesh! If you would like to vote, that would be nice. I will keep blogging, to the best of my ability.

The following are blogs which I have read and on the basis of Honor to whom honor is due, I recommend you check them out. I will vote for them, and have, even though I only found out about it today. You Vote under category here:

Lene at Seated View for Best Post on her Sensitive to the D word post on discrimination and disability, along with a test for able bodied individuals I RECOMMEND!

Steampunk Scholar under Best Culture and Literature. He covers not just steampunks books, films, and events but; for writers, he lists the required theme for anthologies (this year it is Victorian Monsters…now, that is something worth writing about!). He is also disability friendly in his lists, he includes and reviews the steampunk books which are audiobooks and if the reader improves the work or not. Check it out!

Girl with Cane under Best Personal Blog. She describes live post stroke and goes into the kind of gritty detail but also the lighter side of moving onward and upward in life.

feminist Christian under Feminist blog, as she talks about Autism, like her post on ‘the hidden costs of autism’, and has posts on needing a new GP, and criticism of type of Christianity, like defending the rights of prisoners to be visited (against a new ‘mean on crime’ Christian bill). It is, like how disability issues are feminist issues, Christian mom with autistic kids has feminist issues too.

Roughing it in the Books under Best new blog: here is someone who isn’t in university and seems to be reading the New Canadian Library (horrid, horrid covers!) among other Canadian works. Their blog subtitle: Someone always dies in the end – is about the problem or issue of Canadian lit (we are rather depressing, and the protagonist dies).

Please also let us know of other blogs or posts you find of use or interest in the comments, and I will try to include them as I review the different blogs in later post.

PS: While I might end up spending 20% or more of my energy, sometimes 40% of it, on the blog, that doesn’t make it the best blog for YOU. And while I try to cover subjects that are not covered by other blogs and am glad I ended up in the Feminist Category, personal, LGBTQI and HEALTH (as dying is a FORM of health, just not one people like to strive for!) catagories, please vote as you feel personally. Blogs are a form of communication which includes you, even if that is in understanding one person better.

When will spring come back to our lives?

2011-11-29T23:50:00.000-08:00

I can’t stop thinking of Linda finding my body. Of her standing by the side of the bed, and me on the bed, dead.

I like it when she naps with me. In an apartment where 20 people may come and go in a week, and I know none of them, being afraid, or hearing things when unable to move isn’t uncommon. When she is in the bed, I feel safe.

Does she feel safe? She always wanted a bed, those 11 or 12 years we slept on the floor together. And now she has one, just apart enough, or perhaps too far apart from mine.

I want her to be able to walk out of the bedroom, of the apartment and call someone. I don’t want her to have to start sleeping in the living room, to stop from staring at the bed. To stop from waking up and looking over.

I do what I need to do in order to stay alive and she helps me. I have to eat within so many hours, sleep within so many hours. Take this pill or that pill within so many hours. It is becoming harder and harder to balance it all. And when I am tired, I am not fit company, the parts I can remember. Linda said today that I had fallen and then stuck my head under a chair because I wanted to make sure Cheryl would use the hospital bed to help her lungs clear. I have a bruise on my back and shoulders where I fell. I think I should get some duct tape for when I am tired.

I tried hard to blog this month, to be consistent, every other day or more. But my story isn’t the story which people can identify with. Grief and loss, that is something. I am an academic without an academic life, even though I worked through the night last night looking up parliament acts from 30 and 40 years ago, or reading IOC and IAAF documents at 3:00 am. I do not engage in the politics of the university, or publication. It is not a blog about disability living. It is not a sports blog. It is not a feminist blog. It is a blog of a couple, living on one salary when most live on two, and paying enormous medical costs without insurance. Linda did a ‘next level’ test today, and has another tomorrow or the day after. She applies for jobs, and she does the tests online which is the new ‘middle list’ before the short list, then she does the interview. We both work as hard as can from morn till midnight, and life never seems to get easier. I haven’t had a respite this year, or last. And Linda’s respite is now interrupted with a new 24 hour requirement ‘middle list’ essay.

How do I give her stability in this odd space where there is nothing left to stop me from dying, and yet I work to live. I will never stabilize, I will never get better, I will never go back to how it was last year or two years ago. And yet, the effort goes in over and over, to keep going, to stay alive. And when I can’t anymore, and I fall, like recently, the pain builds and builds until after a couple days, I can’t sleep and I must do manually what every other human body does while you sleep, or sit on the couch with a loved one.

I think Linda has a new post at her blog Girl's Gotta Fly (link at side). I haven't read it in case it is something she wants to write about, or needs to write about me which I am better off not knowing; The kind of secrets we hold from those we love for the very reason of that love.

‘Subspace parasites’, brain boards and DVD sets

2011-11-24T21:48:00.000-08:00

I oft wonder, while I wander, though my mind, why people choose ignorance, leaving stereotypes, like the troubles with tribbles, to run amok. I watched ‘Twilight’, an episode from season three of Enterprise, the ‘pre-series’ to the original TV Star Trek.

I used to know as a ‘tween’ the Harvard Lampoon’s parody of science problems with Star Trek, starting with Spock and Captain being beamed down to the planet, then falling into a coma from the shock of sub-atomic re-assembly and dying from a bad atmosphere mix by suffocation. Later Spock is able to find a small lichen on a rock, and confirm alien life so Captain Kirk could start stomping on it and yelling, “That’s one more alien lifeform that won’t threaten the Federation!”

Looking back, I think I thought knowing a lot of different things made me ‘worldly’, but realize they probably just made me weird. Ironically, it is those things which all should know which make me most alienated from the population, like strokes.

In ‘Twilight’, the ship encounters ‘anomalies’, literal bubble which don’t follow rules of logic, much like ‘The Mystery Spot’. The Captain is hit and instead of doing a ‘alternate reality’ (which is common with Star Trek and spin-offs), we have the perspective of someone who can’t form long term memories. The doctor aboard ship, an expert in many, many medical fields, isolates these as ‘quantum subspace parasites’. This stops Captain Archer from remembering anything new each day, and as Archer ages we find out from the Vulcan science officer T’pol what has happened in the meantime. T’Pol shows no weariness or irritation at having to explain the same thing over and over again, which is not only a universal irritant point for family members but other caregivers for conditions from Dementia to temporal lobe damage. Perhaps, it is because vulcans’ are good at suppressing emotion, or better, that they realize it is illogical to blame the person who does not know, any more than yelling at someone who doesn’t know your language (oh, wait, is that not something English speakers, and Americans in particular are known for?).

Back when doing the Bachelors’ the word ‘meta’ was used a lot, and if you wanted to be cool or hip, you had to have ‘meta’characters (self aware characters) in a metaplay, in a metaworld, blah, blah, blah.

So, how Meta is it to watch a show about someone who can’t remember due to brain damage, look at the way they are tried to be kept in the workplace, but as they cannot continue at the same pace, and no accommodation is made, then they are retired. Which is odd, as if I was better, I would work retail, since having someone bring something up, ring it up and take money in some form is something that requires no advanced accumulation of learning. So, I cannot remember what comes in the next second of this story, not even to find out why this is happening to the character, and yet, I know, according to my keeping account of things, that this is the THIRD time I have bought and watched this exact DVD package, before selling it on again. Meta-viewing, perhaps? So, what am I going to find out is causing my problems? Is it the autoimmune disease, the temporal lobe stroke or dozens/hundreds of microstrokes? No, it is parasites which live out of time and if I wait until, well, a few hundred years, but 15 years after a warp 5 ship called Enterprise, the technology will exist so I can remember watching this TV show before. Oh what a glorious day.

It is maybe a good or bad episode, I can’t really tell because it is a painful episode to watch. On screen I see a person talking to the Capt. They are exuding comfort and does the ‘telling’ but here, patiently saying the same thing each day and in the sunshine. That is what life with a memory issue is THERE, but here I am here freezing and raining, sometimes confused with someone angry and frustrated with me. Watching his realization of how growing useless he has become was hard, I had tears in my eyes. I am a 'meta-viewer'.

I fevertly wish that people would understand what it is like not knowing, not remembering, not being able to do anything about it, and just living with the distance that grows between you and everyone because of it. But that would be empathy, and that would mean people would learn that they, not the person who is ill, are the ones doing a bad thing: hurting someone vulnerable and unable to defend themselves equally.

It is easy, when remembering all to humiliate a person who can't; easy to become a bully. But that is how it often or at least sometimes will be, that horrific experience, the shame, humiliation and terror combined into a burning mass in the gut as we must sit, watching the caregiver 'lose it' and ‘lash out’ or yell. We don't tell them that this strong emotion will combine over time until we just are afraid around them, but can't say why. It happens most not from medical staff but from 'family', the loved ones and occurs mostly because they are too proud of themselves to be able to monitor themselves enough to realize, ‘I’m not at my optimal, I need help. If I can't be here for them, I need to walk away for a moment,’ and communicate that. I have heard dozens of people talk about the frustration, and talking, asking questions, found it wasn't that they were trying to connect to that person where they were, it was because they were trying to get the person to come up to their speed, their memory, they are impatient. Yet in life have we all not hadteachers, parents and others patient with US for decades.

As for this show, and the meta view, it is only sadness that in all the actors, writers, producers, no one could be bothered to say, ‘It is a fucking stroke, not intergalactic parasites’. But then, I suppose when House M.D. usually has four doctors who can’t get a basic endocrinologist panel done and don’t seem to read journal articles, I guess expecting science from a science show is too much to hope. Let us avoid learning with a little entertainment. Except for those of us who get to watch it again, and again, and again, and again.

I can understand the way the character shuns the pity in the eyes of those who 'knew' them. Though, I would think that the future would have some aspect of a brain board. I saw another Brain Board: it was on the Oliver Sack's based film, The Music Never Stopped, a 5 star award winner which I recommend highly. It is about a guy who they use the music to connect to, and when he is connected by music he remembers his life, but can't build new memories. It just takes patience and finding out how HE understands and how his brain works.

But his parents had given up on him until his father decided that he was running for a second time. But that is the way of it, isn't it. We make decisions, judgements about others without even accepting that the person is ill. It is not enough that we have this history, triggers they push without knowing, but we decide in our actions to blame them for the disease too. As the father in the film says, he blames the music which his son responds to for destroying both lives; hates that music. Yet it is the music that allows him to learn about his son the person, not the image he had in mind. All it takes is patience and compassion. As they learn how to connect to him, it helps all his schema connections, to build emotional links, a brain board starts, and grows. It was good to know that I wasn't the only one using one. But sad that it took Oliver Sacks 14 YEARS to start connecting to the main character. And how they did create new memories, I knew that one too.

I picked up one or two DVD sets in the Amazon.com sale and hope to get more, as the sale unfolds (sets for $10 at the right time on the right day, that kind of sale), and there are five in the UK I will get once I get some funds (including the Judge Dee Mystery). Here is a advert or reason to gift me a certificate at Amazon.com or Amazon.co.uk (link on the right side): I will get DVD’s that I can watch over....and over...and over. As a gift goes, it is great value for funds. I am only getting the ‘Black Friday’ sales of sets. I find in watching DVD series that ones with stories rather than ones that require just one thing to remember, like who is the killer, to be the ones I can enjoy the most and forget the easiest. Also, I used the sale money and got a jacket for Linda. It is cold here and she needs one, as it is below freezing or freezing in the morn and eve, and even if she drives it is around freezing inside the van we are saving for a tune up. So now, or once it comes, I know she will be warm (and with me sick the last two days, I must have saved on meals, ne?).

Happy Thanksgiving to those in the USA (as I remember it should be for more than shopping on the internet) and I hope that your year, and your heart has created much to be thankful for. And that the tale of intercultural and person acceptance is what makes the Thankgiving a day where essentially accomodation shown as a good thing is celebrated. And so was survival. I'm still here, and while it isn't what it was, and hope is a wee thin to find these days, it is enough, most days.

Rules: how they affect Oscar Pistorius, Castor Semenya & trans/transitioned athletes

2011-11-22T09:54:00.001-08:00

I have been out of it for so long, I just finished six hours of research on the changes to athletics, disability and women’s sports. Perhaps some of that was due to exercising at the Y and the feeling tonight, after several years of a 'brave face', where I just sat and had tears roll down the cheeks. I go to the Y, not because anyone talks to me, or smiles, or says ‘hi’ back, or because I am included even when in class or anywhere, but because I will not give up. And if I have to suffer the glares and rules of an elitist body organization in an elitist town to do it, I will. We try to joke as we go, and say we dread the ‘zero’s and one’s’ (women’s sizes come from 0 which is for thinner than anorexic models to 16 or so, when I was unable to absorb food I went from 12 to 6-8, so still not THIN enough) who will stare at us like we need to have someone ringing a bell ‘BEWARE! BEWARE! A person with body fat is coming through!” Yesh.

First, I want to congratulate Oscar Pistorius who, in qualifying and going to the World Games (in Aug 2011). He is the first amputee competing equally with able body athletes for the World Title. In the 4X400 relay, Pistorius, who had fought the IAAF for three years, taking them to the Court of Sports Arbitration, and winning in order to be able to run was told, along with the team managers that he could run....but only as the lead/first runner.

Ironically, the reason given was the same for why I can’t play volleyball, basketball, or any other drop-in sports at the Y, Oscar might hurt other runners. The IAAF wasn’t concerned for the guy running on blades making a handoff, but that unless he ran in a SEPARATE lane (you know, separate but equal) they could not ensure the safety of the other runners (you know, the ones that can step sideways while running). Yet another rule created by the IAAF president, Lamine Diack for a single athlete.

The problem is the strategy of the 4X400 means that going first is not his usual position. And his times in a later position would have ensured he ran in the finals. Except, though Oscar was part of the team which qualified in all the heats, politics were made so the South African Bronze medallist would take over a spot in the final run. If Oscar had been kept in (in a later position), his time would have gotten them first, but ever race is different, so who knows. Either way, he was dropped, the team lost to the USA and while Oscar gets a Silver Medal (for running all the qualifying heats), he doesn’t have a moment on the podium at the end.

Oscar also qualified for individual 400 at the world games, and came up through the heats to the Semi-Finals before being eliminated. He was extremely consistant, within 1/3rd of a second of his best time (45.05). He wanted to be in the finals, but it would have meant a new personal best, and a slower day for the international competition.

I am going to try, tomorrow, to write about Tracy Whitbread (currently on a UK ‘celeb: get me out of here!’ show), three time Olympian and world record holder for the Javalin and hyperandrogenism, which is the opposite of the Female Triad (disordered eating, lack of menses and osteoporosis). In a study on the Triad, they found about 30% of females who ate well also had a lack of menses and hyperandrogenism (a mild increase in androgyn). I have written to a specialist in this aspect of female sports medicine to find out why this happens and what exactly does happen.

Tracy Whitbread, yet another female athlete who has been called ‘hermaphrodite’, even though she has a 13 year old son and wrote an autobiography which indicates she most definitely is not. Certain types of British papers like to use that word a lot: sells copy. However, when the BBC made a joke about Tracy, she sued them and won. Go Tracy.

One problem with the IAAF is that it, like the Y, sort of just makes up the rules as it goes along. No greater example of this is Castor Semenya, who fell into the limbo of IAAF gender policy. While the Olympics ruled on gender years ago, including male to female transitioned athletes (and female to male), with the IAAF banning all transitioned athletes, there was no way for any of these athletes to get TO the Olympics.

The gender rule of the IAAF was, ‘if an official feels a female isn’t ‘all female’ then they get a ‘gender test.’ There is no gender test for males. Myron Genel, the endocrinologist who advises the IAAF left Castor Semenya in a Limbo for 11 months, while she waited to hear if she was considered female for racing. He wanted new rules which as he puts it, "..ought to at least eliminate the stigmatization of certain women who people feel 'don't look quite right'," says Genel. So it is more of a ‘what does Genel think a woman should look like…test’

The new rules, only a few months old, finally allow transitioned athletes, but only under onerous and almost lifelong testing. It is to anonymous of course, the same way Caster Semenya’s test, which was leaked BEFORE she went out to run and win the world championship 800 meters, and was then led off by officials was anonymous. Or how there were leaks from anonymous ‘IAAF officials’ on how Castor was intersex, Caster was a male, Caster was a transsexual.

Was Castor Semenya allowed to respond to any of these leaks by IAAF rulings? No. And what is typically a couple hour/day or two test took just under a year to okay Castor to run again. This was the IAAF wanted to be ‘fair’.

Interestingly, in 2006-2007 Canada sports created a panel to look at transgender and transitioned athletes in sports. While refusing a direct interview, they did give a background piece from their conclusions (how Canadian to avoid talking about things…..not always socially accepted), which states: "It is widely assumed that transitioned females compete at an advantage over biologically-born females. There is a growing body of evidence to show that transitioned females actually compete at a disadvantage to all other female competitors,"

Canada has not, however, made any changes to assist transitioned female athletes, or any other province or city. Nor has the IAAF, a body which has shown over and over, and over how they are ready to enact for individual athletes or entire groups, all quoting they are doing it in ‘the fairness of sports.’ But then, it always seemed the rulings were more about keeping the status quo, like the ruling that because the rule was to put the ‘foot’ on the starting block, Oscar, wearing blades and no lower legs, would not be able to run.

I keep wanting to believe in a world of gold, but end up with a world of lead. Onward to Castor and Tracy Whitbread.

Follow the Body ("If today was your last day..")

2011-11-19T23:37:00.000-08:00

“What if today was your LAST day” a car commercial asks, while some food establishment advocates us to live as if it is the last day. When we are bored we ask each other, “What would you do if this was your last day.” I think they probably should ask, “If this was your last day, what would you be able to do?”

Sometimes people want to know if we see evidence that the end is near. Well, without a howling banshee outside, I am not sure how much more signs are needed. People see me at my best, and like the person who, in only seeing the neighbor with cancer every few weeks when she smiled, concluded that her cancer was ‘pleasant’, even though she died from it, will ask, “Do you see the evidence now of Beth’s dying?”

It isn’t that we have started seeing evidence, it is only that we are seeing far less of anything else.

The trick with keeping a body going beyond autonomic function expiration date is to be surrounded by people who can see the signs. Having someone who wakes up when you stop breathing is important. So several times a day to many times a week, they catch after checking, and rechecking a body which is overheating for no reason, a heart slowing to a stop, or too erratic, lungs crushed, unable to swallow, unable to breathe, diaphragm to weak and choking in sleep, or a dozen other things. A couple days Linda asked how I was, and I said okay, just the fingers turning black, and showed her the hand’s palm, with the tops black and the fingers dusky, then laughed. What else is there to do, stick it in a fire (I’ve tried that).

I have always lived by ‘surviving’: if there was a fiscal problem, then I worked an extra job; I just pushed through, no sleep or little, working 14 or 16 hours a day for years was completely normal. Perhaps my ‘normal’ isn’t other people’s ‘normal’ but I know that a lot of people have to take second jobs, and to me it just made sense.

Then I got ill, but there was a routine, I might need to sleep more but so much of my body worked that I continued to push through when I needed to, so often on weekends, when Cheryl was here, there would be less sleep, sometimes only 2 or 3 hours in the determination to go out and see things, wrap packages, send out gifts and send postcards. And the same occurred during the week.

But in the same way people talk about ‘old age’ catching up to them, a terminal disease has a cycle, and if you have a rapid and or degenerative disease, that cycle changes rapidly. If you have a disease that is degenerative, and life shortening, you still have this cycle, it is just a lot easier to play the denial card, pretty much all the way to the end. But since they said when I was 28 that my heart would literally explode in my chest by 40, I wasn’t looking for the long life. But there is quite a difference between a heart wall thinning and progressive organ failure.

I follow my body not because it ‘knows best’ but because it is the only chance I have of living. And I want to live. I want to see Linda tomorrow. I to see, meet and otherwise know new things, new people, and life in general.

But my body and thus my life is off balance. My body is always at the ‘teeter point’, that ‘oh shit’ when you are about to fall into the river or down a ravine, or you can feel your bike skid sideways on the gravel. It is rare for me to have enough energy to have ALL of my body functions (like organs) work at the same time, and I never will anymore. So when I eat, I get slow and stupid, because I can either digest my food or send blood to the brain. It just is. After I exercise, I often don’t breath once I fully relax, then I will have massive heart problems, or lung problems. I need the exercise, because only in keeping the vascular system working, including sending blood all the way to the skin, do I avoid infections, gangrene, and the other joys that those with advanced diabetes already know, until eventually the nerves, skin, muscle would die simply due to being too far out. I need the exercise, but to do it, there is a cost, which is unknown until I suffer through it. How much is too much exercise? There simply is no way to know until later, and no way to tell what is ‘too much’ the next week.

My exercise makes people nervous. It makes workers nervous. I try to explain that when I pass out for longer than 30 seconds they are there to alert staff or call 911. And that personally I find doing it myself with NO ONE a worse safety net, but I will. And yes, I do pass out, because I usually do the first 120 sit-ups and push-ups in sets of 30 alternating and going as fast as possible (with boxing jabs while doing sit-ups). And yes, I do pass out, for a few seconds often. But to just get the sweat started I need that extreme heart beat and pressure.

Lots of people say, ‘You got a good work out, I saw you sweating.’ I go until the sweat is pouring off of me, no matter how hard, because ‘is that enough sweat’ is something I am betting my LIFE on. When the last specialist said it is the exercise keeping me alive, then I don’t take chances on whether a little sweat is enough.

So, when I ‘Follow the Body’ does that sometimes mean pain or unexplained and overwhelming pain? Yes. And we treat it like the time the ER doctor gave morphine so I could talk. Am I sorry that I am in pain? Yes. Am I sorry that I write about it, or people’s reactions to it? No.

We are so used to being in ‘control’ that when we don’t have it, don’t even have the choice of it, and find that frustrating and leaving us with a bad taste and helpless: Ah, now you are starting to understand illnesses, like cancer; like mine. In war, people were in pain, and even if they lived for months, they could be in rather horrific pain with rather horrific looks or oozing sores, or other effects. And we condemn the historians for smoothing over WWI or Crimean War, making it grand instead of showing what it was ‘really like’. Yet today we glorify the better parts of illnesses from M.E./fibro/MS/Lupus and show the plucky person in remission, or anything BUT what is. Much like in the military hospitals, spruced up and eliminated of maggots in gangrene before the film crew arrived.

I went for my 2 or 3 hour nap today and woke up 5.5 hours later (I had stopped breathing in my sleep as well, and needed to be ‘bagged’ and breathing done for me), and then elevated for the dysfunctioning diaphragm to work. This wasn’t my plan, or how my day was to be. But the body decides and I follow. I have nausea, for hours, and no remedies from Mayo’s fixes it this time. Things that go wrong just go wrong, and I overheat or go into seizures or wake after 1 hour instead of 8 with half of my body and face dropsy for no reason whatsoever. I take all the medications. It is simply what dying is about. And for me, I would rather be up, as and when I can, while I can. But those times when I can’t, neither I nor any others with diseases which require a consciousness to follow the erratic whims of a body, have disappeared, or want to be doing any less.

If you know someone who follows the body, or who had disappeared from work for ‘health reasons’ or cancer, then I recommend writing a letter, or sending some version of ‘hello’. Because when you have to follow the body, it is not so much that I or someone else ‘disappears’ but that everyone else does, like a world out of time and out of place. I am constant, living with the same disease I had two, three and four years ago, but like someone whose pace slows due to an impairment, that doesn’t mean all, or even many, will slow with me.

When I was 16, I wrote a short short story, published, about three friends of differing impairments, and abilities but how they slowed for each other so that, together, watching, no one noticed anything but three friends laughing. I had dozens of people including my own teachers coming up to ask me, "What does the story MEAN?"

Yeah.

Pain day lost

2011-11-17T23:30:00.000-08:00

Pain day, day lost. I couldn’t sleep much, and couldn’t use my arms. The last pain pills ran out. The last two hours was just waiting, waiting. You didn’t like the reception, or didn’t realize that even light hurt, and sound hurt like someone punching my kidney. You said before sleep you did know those both hurt, but you walked out anyway, to the far end of the apartment. And me, still without able to use my arms.

The first thirty or forty minutes I thought you might come back, and resisted, until I started crying. I don’t know how long I wailed, but I knew you went to the far end of the apartment so as not to hear it. I called for help and even after the care worker came, they never came to the calls for help, or to check on me. You had them busy following orders.

I don’t know how, after 9 hours of being awake and five of awake, helpless and then knowing you choose not to do anything, your complaints on being tired and how I should go, go somewhere else to ‘amuse myself, while I sleep’ could hurt more than the physical pain. Or how many times the few people or workers I see, those who don’t even know the names of the pain medications I used, because they don’t have a single other client whose meds are so high complain about some pain, after leaving me waiting, or after dismissing my pain. It is hypocrisy to ask me to care about you, just because you know I will, or complain, and then ‘forget’ pain meds for me, or caring what happens to me at all.

The one common feature of care workers and medical staff is how callous they have universally become. It isn’t that they can’t bond with people, it is that they don’t want to bond with the likes of us, as there is no upside for them; just learn to take the money and go.

All 50 lots are up on ebay and here, and if you know someplace near Victoria with a set of used tires with good tread, that is what much will go towards.

Missed this and that

2011-11-16T05:17:00.000-08:00

Missed an appointment today because of some food poisoning issue, and having no clothes ready, and just not enough time to arrive on time. And I went and slept, and slept for the hours I needed, which I had been shaving.

I need 8 hours of sleep, six awake, two to three down, then six awake. BM’s can take 15 minutes or 3 hours. I have been trying for 2-3 weeks to make that stable, with all the tools doctors can give. But not yet. I have been trying to make the day schedule work….but not yet. That the day schedule, which sometimes happens, but then the week and month schedule screw it up too – it is like flying a helicopter.

Every week, every month there are appointments and things to be done to increase survival. I also need to shower, change clothes, and do the mundane tasks which only need planning if living sucks, like ‘taking a drink of water’ – not usually something that takes a couple minutes, or ‘looking at your watch’ – but it does take minutes now, and focus, and concentration. I need to exercise, I need to shower. I still don’t have consistent workers until Wednesday, and in the last three weeks, cancellations from Friday to Monday. Tuesday we don’t have workers. That gives me 2 hours on Wednesday, 2 hours on Thursday and alternating Thursday nights (except this month) when I will get meals, might get exercise, a shower/bath, and clothes.

It is a funny old life.

I really needed that appointment today. But what could go wrong did. The worker today didn’t follow instructions and actually put away the things I needed for getting ready to go. I can’t try again tomorrow, because there is no space or time tomorrow, but I can try again later, maybe, in a month or two.

Easy: I’m in a wheelchair, so I’m good Hard: Wheelchairs transport, I’m human

2011-11-15T06:30:00.000-08:00

There are people who I share my life with. There are people who share their life with me. There are people who I write to, but I don’t open up to, because of being hurt in the past. There are many people who, may or may not communicate much, but don’t open up (for reasons only they will know).

Though on Screw Bronze, I try to show a portion of my life, and now, in 2011, I try to show, with more clarity and honesty, what life is like for me. That includes not just who I am and what I stand for, but also ‘the daily grind’ and the cost physically of doing things. Perhaps I hide the emotional cost too much.

Even so, I will never be the person that those who read this blog want me to be. If 100 people read it, that is 100 different ideas of who I am, and when I cross a line that a person thinks I shouldn't or wouldn't, then I am not who they want me to be. I suppose that is part of being friends, in that we learn to adapt ourselves and accept the changes we find and learn about each other.

I can never be who Linda or Cheryl want me to be. For them, it is because I am imperfect (and being imperfect, I will fail myself, I will mess up, I will offend, I will let them down), but also because a disease which affects the mind and emotions leaves the other person in a confusion place. Tonight, something triggered me, and in fear, panic, and actually reliving the pain of a previous event (at some moments I thought it was those weeks ago), I emotionally over-reacted, leaving Linda confused as to what she had done in the NOW. I don't know how well I explained that.

The last two nights I have had such pain I was hallucinating from the pain, and Linda talked to me, rubbed me, as I moaned with each breath, and I bit down on things or clutched plushie animals hoping I didn’t break a tooth or praying for sleep. I am certain I almost died. Yet, during flu season, people will get sick and will feel horrible, and that horrible will become intolerable, until it seems like it just can’t go on. That it is impossible to go on, with that fever (like that one I had for 40+ days straight) or the pain, or the respiration agony.

In 2008, as an attractive female in a wheelchair, looking good, talking sexy and with literally 100 times the energy I have now, I could travel, edit photos, write and blog daily all at the same time. I was writing for Ouch!, for here, and getting interviewed in magazines, newspapers, radio. And I knew my disease would kill me, that it was terminal, and I couldn’t stop thinking about that, any more than a person who has been diagnosed with cancer and shown the X-rays and the CAT scans can stop thinking about it.

Only now I don’t think about it, or write about me making jokes with doctors, or being sassy during some odd test, I am living the ebb and flow of dying.

The pain medication I am on now is a couple HUNDRED TIMES the pain meds I was on in 2008.

In 2008, I traveled because I had enough energy to not only make money and look for jobs, but write for free as well. I have not, beyond the advance of $1000 made money from Zed. I moved here because Arsenal asked me to, and put it in a contract that I be ‘available’ for promotions (which they never did) – so I spent about $10,000 – Zed was noted as a ‘really good book’, I won an award, I got in the top 100 books of the year, and I was the debut book of the year. A good start to a career, for only the cost of $9,000 (5,000 pounds UK). Arsenal took all my other writing, including the promotional material they sent to presses, sold film rights, sold electronic rights – none of which was agreed or contracted and they kept all the money for it. Arsenal was listed as ‘best of Canadian Independent Publishers’. Just a hint of how things went fiscally, and how it goes for a starting writer, who then gets really ill and has to decide to write another book or blog a life of being ill. I chose blogging. About 50-70 people who shared their lives with me have left, 14 have died. Another 800 individuals simply didn’t write back, while about 140 stopped writing or while we exchanged gifts, packages, letters and postcards, they simply stopped. Looking at those numbers it is hard to see how I had that energy, but I did. When doing 80-90 postcards each weekend, with the help of Cheryl and Linda, it was possible.

Now, I take the chances I can. I had the chance to do the Terry Fox 5K walking and I did, though I would not be able to do that now.

Writing about dementia lost me friends, writing about walking lost me friends. Perhaps for people who see more than 6 people in a week, that doesn’t seem like much. I get more hate emails than I get conversational ones most weeks. That is just how it is.

For me, writing about dementia was writing about both my life and something that was important. I hear people talk about how horrible it was for THEM to watch someone going through dementia. There are several million people who will attest to the living HELL of Dementia and a few hundred or thousand people who know that life with dementia doesn’t have to be Hell. It can be emotional hell for those who are close to the people with dementia, but it doesn’t have to be hell.

I had my shot at walking and I took it, whether it hurt my heart, shortened my life or not.

Now, my mobility is severely restricted and even when at my most lucid, I struggle with clarity. I don’t just jumble letters or words, I think I am writing one word or sentence and find, a day or week later, that I wrote something very different. To think you wrote about your head and find you wrote gibberish about a ‘bed’ lets me know that great writing takes focus, craft, patience and love. My memory is also getting much worse, where, like crab-grass, even memories from before being ill are getting lost, swallowed up.

The reaction to my writing about dementia has been mostly animosity and denial. If the choice is between someone who HAS dementia and the ‘common belief’ of those who don’t on what it is like, people would rather choose the incorrect ‘common belief’. I am not what I could be: a person who could help explain to those working in health care what the second most common type of dementia is like (a dementia expert) for the same reason people don’t want to hear their children are gay, or trans: because they would rather hold onto a lie which they are comfortable with than face change.

Because I walked, because I am not a stereotype of plucky or inspirational, because I am most of all, a human, who has a disease that is complicated and nasty, there is a distancing from wheelchair users as well. It was the reason that I, who puts up no awards, put up that one. Because who goes looking to be the ‘wheelchair award’ – I am a chair? I said at the BBC that a wheelchair is a mobility device, and I meant it. I said I would trade it in for something better if I could, and I meant it.

To look up to a stereotype and shun a peron is easy. But then, weaknesses often are. We are cruel to each other because it is easy. We take the easy path, even when we know it will lead to no good. Why? Why is saying, “I was wrong, I’m sorry.” So hard? I don’t know. I get a little perspective from being about to die but not that answer. Perhaps it is because we lie, and are so used to lying that lying becomes easy too. Every time we say, “I don’t have time.” We lie.

I have time to do postcards. I don’t have time to do postcards and eat, or do the things to keep me out of hospital or dead. So I could do postcards for 2 days. I would write you an email, each of you, a personal email. All it would cost me would be any communication with Linda and I would need to spend three days in bed to recover. That is what is. Perhaps you don’t have time for everyone so there is no time for anyone? I know that one. Though there are a few people, two in particular without whom I would not have had electricity or food for part of a year.

Because having a temp job like Linda. Well, if she gets the job her ASSISTANT used to have, we will have $500 more a month. And can probably afford things like: certain foods, a pair of shoes, having my hair cut (once in just under two years now), a pair of gloves this winter, a pair of socks (two years since that). We have dozens and dozens of things to fix or catch up on, a computer that is seven years old and just making it, for example. But that’s life. We survive because I sacrifice and Linda does as well. And because of two friends, who I share my life with.

Many people have been kind to me, and I have tried to make sure to thank them and to be equally kind back. But few are there particularly in the bad times. And it is still very bad times. I am thankful, and now have socks because generious people made some for me last winter or the winter before. I have a fan from a body that overheats because of a gift. so we can retire the 60% of a fan (no base, rattling, beat up motor) that was what I had before. I have things to read because of gifts, and things to watch. And I hope that others have things to read and watch, and feet warm from the nine pair of slippers I've sent out, or the 35 writing pads, or the 100+ books, and a couple dozen DVD's. And if I've forgotten, let me know, as I have some things waiting to be framed, including: the inside of an airplane cockpit, some very cool aviation pictures, and a franked enveloped from TWA first flight. Also more books, more DVD's, more 'stuff', and I've gone and forgotten who likes what.

‘Life is a playground…..or nothing’

2011-11-13T07:36:00.000-08:00

“I am not afraid of dying, but of having not lived enough.” From Mr. Nemo Nobody

A film about the mobius strip that is time and the infinity fan of choice, and how all choices lead onward, even when we don’t make choices. So whether you have a indent under your lip from the angel of memory sealing all knowledge away from you when you were conceived or not....all futures eventually because chosen futures. If Barton Fink was a Canadian-UK space opera about time, the future, and going to mars, it would be this film: Mr. Nobody (Winner of the Venice Film Festival and European Film Awards).

Mr. Nobodyis shot in the yellow tint of UK films of the 70’s and in the high tech detail when showing the mars ship, the colony, and the future where there is no sex but we all have our own stem cell pig to keep us immortal. It is a film that is a love story (actually five films that are love stories, 2 are tragedies, and 1 is just an accidental death), it is a film about the meaning of life, choices and the meaning that brings (4 films, including 1 in a coma), is it about writing fiction and films (2 films), and it is about the choices we refuse to take upon ourselves, but put upon children, like who to live with, the mother or father? (Either 3 or 9 films). It does what a film is supposed to do, bring wonder, and amazement and anticipation on what the next shots, next scenes will be. So, as IMBD (which was hosted on my uni’s website, until it moved on to larger servers) says, ‘Why are you not watching it now?’ (click the link, it is $6.30 New)

To be indoors, in the same room, while like a prison, is also like the imagination, and the enjoyment of going outside is the complexity of a creation not of my own. The world is filled with far too much absurdity, bombardment of the trivial and contradiction to make a good story, but that in itself makes a good story.

It was cold enough to require three layers, the second was a light h.naoto purple hoodie, while a hoodie with my ribs and spine in rainbow colours made up the third layer. I have wanted to put stickers or mark on the spine, ‘Damage here’, ‘Destroyed here’, ‘Trickle Flow here’. Going through the low ceiling leading to the inner atrium in which homeless play instruments and smoke, as people pass in and out of the library entrance, I ran into a gaggle of Christians. What is the name for two busloads of Christian Teens? If it is a sleuth of bears and a grist of bees, should it be a siege of Christians? Or like mice, should they be a mischief of Christian teenage girls and like prairie dogs, a coterie of Christian teenage boys?

As they brushed past me, preening over the ‘did you see’, the lookie-loo of pride the lens to view the world. It is a problem with Christian ophthalmology in that it is they who look through lenses, but everyone else who has the diseases (ironically, like Edwardian train-stop salesmen, it is the same device that cures all the different ills). Having been ‘one of the elect’, and having etched into my brain the shame of myself, an earnest 16 year old giving a lecture to my aunt with three children (with, of course, the best of intentions). She told me kindly that things looked different when I was her age. She was right, because by that time I had come out and she had joined the Russian Orthodox Church with her son, and thus, condemned me, and has refused to see me for the last 14 years (for my sins). So, as these eager teens, looking me over, ‘oh won’t she be glad for heaven where all are healed’, and then flowing by, they fill me with amusement. Part of it was overhearing and knowing those eyes of eagerness, the preening knowledge that ‘I, not like THESE, am having ‘good clean fun’” and more because I was restraining myself from screaming, “Oh the yearn of my screaming clit, though it aches for tongue, I would be satisfied with a bumpy ride on bus with leather seats and a bit of slide”

There was something about walking through the third floor at uni, the quietest floor of Religious studies, which made me have to hold both hands over my mouth as I experience a tourette-like compulsion to scream out obscenities. Thank goodness I was so ‘vanilla’ back then, as a few gay and lesbian parties clued me in on many of the jokes I had been missing and all of Stephen Fry’s jokes, particularly on QI (except in season A, when he was unable to anatomically place the g-spot, vagina and other female bits, and was given great embarrassment over it by his female guest (afterward, it seemed there were no more female guests).

In the library, I found this film, Mr. Nobody, and Clash of the Titans, which as the adverts at the front of the film advertised the 70’s version of the film. I though that was taking ‘meek and mild’ a bit far, when you say, ‘perhaps you like to stop watching this film and go buy another one instead’. I bumbled around and headed toward teen books, seeing Popby Korman, about early onset dementia and men’s sports, something covered one episode of Nurse Jackie (season 2). At home I told Linda how in Nurse Jackie, the administrator had told her to divorce, and Linda said she had gotten the same advice. It seems that everyone knows that the system is broken, but instead of fixing it, they advise people to destroy lives, and rip up vows. Or rather, because the government lies and breaks a promise, we are supposed to tear up the paper we flew over to get, and fought so hard for? There is a sadness beyond that of having dementia taking away what you thought was forever yours: memory, knowledge, dignity, choice. Now the sadness is that spouses are told to become collaborators, as hospitals, admin, police, social services all lie and openly accept the lie that a couple is divorced because it is an entrenched ‘easy’ solution, but one which gives no one dignity, or security, or the belief in a system which starts with saying that fidelity, honesty or moral beliefs will bankrupt you and beyond.

The guard got points for saying ‘miss’ (unlike a woman a week or two ago who was about 7 or 8 years younger than me and asked ‘Do you need help up the hill MA’AM’ – I know I don’t look my best going up a hill but really…), but then lost it for trying to shoo me to the door and then shutting off the lights.

“How exactly did that happen?” Linda wanted to know, “They announce they are closing in 30 minutes and by the time I walk to you they are closing in five minutes.”

Linda had found some rom-com to read, and I had not found much of anything at all, a few titles to try, sadly unable to find the book I read as a teen about a girl who puts on a cap and clothes, and gets a job in a speak-easy as a delivery boy (called ‘____ water’) - a prize if anyone knows the name, the cover has feet and a cap as she is slumped clothed in a bathtub. It was the kind of book that made you wish you had the kind of adventure like that, but also knew that someone was going to find out, and then it would all come crashing down. Oddly, I think at a tween or younger teen, there is a knowledge that all good adventures eventually do come crashing down, and that doesn’t detract from how good an adventure it is.

At home, I worked with Linda on the ebay auction of some manga series (I try for complete series, including the highly praised and educational ‘crazy for dogs’ as well as rare yuri titles like Burst Angel – when Jo learned how to be a gunslinger and fell in love with a girl, meg, who was pretty handy with a gun too), plus lot of out of print manga series. If you want to see the list, click here (more will be added on Sunday, about 15-20 more. I wanted to get some of the bigger sets out there and the ones in NEW condition, or in wrappers, like The Beautiful and Ugly World, so they would be good Xmas presents. Warning: some titles in flux and will be done by Sunday Night (linda puts $100 if the books are out of print and wants to check with me, then we fix a reasonable start).

Linda and I talked about dreams, and yesterday about our alumni, and how when I graduated, Cardiff was in the top 100 universities worldwide, and not far off London School of Economics, getting a 7 in the UK and ranking 5th for my department and next year's 2012 Guardian pick. It also has I think 2 shops where females can buy a decent vibrator on the High Street. I do like the little private shops tucked away on the first floor (second floor for North Americans), late Victorian shopping arcades. I saw that one of the people I chatted with a bit at the uni about things won the Nobel Prize a couple years after I left. It wasn’t what I chatted about, but then Cardiff is like that: the place I dropped off our laundry (as we didn’t have a washing machine) had an owner who helped me with my computer problems, and we traded films to watch. I also miss dropping in to talk to one of the older lecturers in the department about Conrad’s connection to everything from the film Aliens to Bennet’s articles on if his books could be the first fiction considered ‘literature’. It was eclectic, as the woman doing admin was likely to have had several journal articles for her field work on dinasour DNA. But she liked going home at 4:30, or rather, to the pub, and having a glass of wine or two, and trading joys of visiting one city or another.

I think most Euro cities we saw on the 49 pound return airfare we ended up staying at hotel recommended to us by other women (like an air conditioned hotel in downtown Paris for 39 euro). Including the one Inn at Venice where the guy tried to convert us to Catholicism at least four times daily, it got so we almost welcomed the whistling, grunting, throat clearing, and other noises men made as we walked by (Which was subtle compared to other Northern Italian cities, where they just followed us, or offered to close the store and take us drinking).

Linda said that one of her favorite memories was me getting us into the disabled loo in the Victoria and Albert Museum (once part of Albertville, built from the profits of his Great Exhibition). We went there as the ORIGINAL 112 year old tiles are in there (older than the more decorative 'tea room tiles'), but they have/had a security guard you have to sweet talk past. The reason is because this is the toilet that was put in for the use of Queen Victoria in 1899. And I got us in to see them (for those that want to steampunk Victoriania the home, I recommend Original Features for hand made wallpaper ala William Morris and tiles). It seems the restoration while we were there is done and the toilet is now more generally used, alas, not requiring to get past two security guards, due to a new cafe. It is covered well in Wilkypedia. Here, by the by, is a William Morris tile part wall at the V&A which was meant for use in a bathroom (now don't you want to redo yours?

Same as in Glasglow, when we got the art Curate to come out because I had a question over this massive Gustave Dore' painting on hunting scottish elk, as I did not know Dore', who illustrated some Dickens and other London books had come and painted in Scotland. The curator, who thought Dore' a hack, and really anyone in the last 300 years a hack avoided the question by ranting about the reams of 'junk' they have in the back and how he drags out a painting to fit the space (Dore must have come to scotland, thanks to Beck Gamble who took this Dore' picture OF SCOTLAND two months ago in Toledo, a bit far from scotland - we weren't allowed to take a picture in Glasglow museum of art, alas). Well, our luck then. I seem to get behind the scenes in all the Museums we go to, one for Autistics would be the Charles Mackintosh museum in Glasglow where they have the room he created for a colour-blind individual(I think Escher would love it!).

Remembering our travel, I am seriously worried about Linda when I am gone, as her sense of direction is very bad. I hope that an app will come out for the ipod I got her for anniversary/birthday which will help her to get all her hotels and locations.

I still like having the playground of living.

“What is it like, living while your body is dying?”

2011-11-10T08:08:00.001-08:00

When standing within a waterfall, I stand firm, letting it thunder onto and over me. I laugh, because it is terrifying, and if too weak to feel the pull downward, the dance of balance to not end fallen and smashed where I stand, then it never seemed to count. Standing in a waterfall like that is an attempt at control where it cannot exist.

An extra surge of water and I teeter, my tongue hangs out with the bleat of fear and surprise. My bare feet curl the edge of the rock, balancing against the polish and slick of it. I can see people watching, but I can’t hear them. My mouth is open and I am screaming, but all I hear is the water’s bellow as it rushes and crashes onward, with the sound rebounding and surrounding me.
I’d hike out to the waterfalls, or travel to them. And the unguarded ones, there I could lose myself in the falls, usually past a rusted ‘Danger’ sign. Inside the funnel of thrashing thunder, the sounds inside me, the voices outside, all are distant. The pulse of the river becomes my pulse, slammed into me from above, shaking the heart, ribs, into quivering legs. Inside me, in my mind, I imagine I can hear the howl from the water, pulled from the earth, as it shouts exultant. But the waterfall doesn’t know me, and doesn’t care about me. I remind myself of that. It has no fury, it has no anger, but it still pounds rock to broken shards and I am not made of stone.

I was asked what ‘it’ is like, living now? ‘It’ is that gorgon knot of pain, isolation, and the fingers and connections I feel leaving, no matter how much I yearn. It is this part of dying, while still desperately alive, when they can only watch.

“It is like standing under a waterfall.” My hands, my body are reverberating to the boom of a heart exploding. “It is like standing under the waterfall, and never being able to leave.”

At the gym I train myself to feel the tearing in my heart and keep going, and soon, I hope, I won’t even stagger as the searing pain mixes tears into the sweat rolling down my cheeks.

Feel it pound me, that waterfall, when I walk, when I wheel, when I fall on the floor of the gym, curling as best as I can into the fetal position. I hear thin voices, like whispers from afar coming from outside the body’s din. People’s voices are just noises bouncing off the eardrums, distant, like the wind that bends the dead grass which has pushed up through the snow. In here, I am still under the waterfall, and it shakes me, moving through and past me. I have to remember. Try, damn it, try to remember despite the clamor. Why isn’t it ever silent? I am keening in the back of my throat. No. No, that won’t stop it. I have to stand.

There is no way to ‘become’ the waterfall, for it doesn’t think, it gathers, it falls, and then pools and flows on. There is no managing it, just bracing myself among the thunder, pulling myself up once more. It is there when I am awake, when I dream, in the last moments of consciousness, and the first feeling that I sift through to realize that Linda is over me, the ambi-bag pushing out my cheeks and filling up the lungs…2…3…4 and push, as I breath again. I am back and I feel the roar of the waterfall slamming into me.

That is what ‘holding on’ means. And when I groan, wanting to collapse into wailing and sobbing, I remember that no one has chosen to be here but me. I remember those who held on, the friends who died, so many, and how they looked past the fury and spray and reached out to me because I was new and scared. They had heart.

But god, I get so tired.

It isn’t about ‘spoons’ but rather heart and grit. In the world where I stand and holding on, there is another world, which races past like a freeway, like the M4 of people moving so fast I can barely see them, or hear as they shout out about ‘life’ and ‘too busy.’ To hear 'life' and see the blur moving away while I am lost in precarious living is to hurt. But to do more in life than hurting, reaching beyond that, is like raising an arm from under the smashing weight of the waterfall, a mixture of defiance and joy. And so, there is an accomplishment in the mundane: reading a letter, even just eating is hard won, writing this, sometimes stopping and just breathing; a deep breath while wheeling, noting the last of autumn colours. Seeing the world I love, the people I love from further and further away is always bittersweet, but each moment or hour stolen is filled within not with melancholy but the kind of warm joy felt as a child from each page I read under the sheets. It feels like the memory of tying the knots on my shoes correctly. The secret smiles. There might not be anyone to praise the milestones, and knowing I am more than just blind enduring agony isn’t always enough, but it helps.

I know sometimes, there is in my eyes that pleading of a wounded and long hunted deer, or a fox chased to exhaustion, where beyond the survival, the rapid gasping which barely hold back the mewling, the yelp which asks ‘why?’ And in the eyes and the wail, a sound of desperate misery and the open face aching, delicate from betrayal. The eyes show a spirit battered and succumbed, opened wide, empty beyond the pulsating, the pummeling, and my eyes stop flitting from face to face and settle, staring in hope, asking silently, ‘Will it be over now?’

Gynandromorphs: the diversity of the world

2011-11-08T23:20:00.000-08:00

Gynandromorphs in humans would be likely mosiac intersex (hit link to see 14 different dual sex animals - beware the offensive and human-centric 'shock headline').These are animals which are dual sex: half male and half female (the birds are quite stunning). You can see that they literally split right down the middle, in coloring and more, in some, gender is only found on a cellular level.I find it facinating that it is so easy to accept the diversity in nature, but refuse the same diversity in humans (as indicated by the title 'shemales of nature' Sigh).

Also from science are studies on the nature of birds that live as females (more offensive and human-centric 'shock headline'). What makes it unusual is that these are birds of prey, historically and emotionally seen as 'dominant males'. The birds mimic or live as females with female plumage often for protection and other reasons (including, yes, sex!).

I went exercising for several hours, so I am totally punked out. Will be all insightful in a bit.

Citizen of Kingdom of the Wicked

2011-11-06T04:39:00.000-08:00

I recently read Kingdom of the Wicked, from what is listed as ‘The Premier children’s author of the 21st century’. It is a story of fantasy and imagination, mixed with realism of medical conditions of the writer of the work. The writer is the creator of worlds of imagination, beloved around the world, who had a world of vivid imagination from his youth. But this world has been invaded by an 'Other’, who looks like him but is not, and who loves doing evil, glass in food, needles in baby food, then comes the torturing of animals and humans. Is this about the balance of the author between the good and evil within? No, but about the balance between the good person and the literal monster co-existing within: remnants of a mosaic twin.

It is always personally challenging to read that you, the actual person reading is the personification of all evil, wickedness and the most horrific medical experiments, not because of what you have chosen, but simply because of who you are. In WWII, the analogy was that the Jews were rats, literally destroying the country and all places they lived, because they lived, and thus the killing of them was only justified.

In this book, Kingdom of the Wicked, the reader is urged, like the narrator, to seek out the intersex nature of the self, because it is evil, a monster whether woken or not, which is best off dead. And if that can be done metaphorically good, but if you can do it physically, even better.

I shouldn’t have been surprised, as intersex characters are universally either hated, need to be destroyed or are simply monsters. Hanna, in the named movie, is a recent example, in her abnormalities, as Discover Magazine calls her the transhuman tragedy, bred genetically evil. But I was surprised in the book at how openly the mosiac parts of the author are blamed for ill health, that they are malevolent; a innate drive to kill, maim and hurt.

The two books with ‘hermaphrodites’ as both authors openly admit that they did no medical research or even basic reading of what intersex means, are Annabel and Middlesex. I have already reviewed Middlesex, by an author which was protested by the ISNA (Intersex Society of North America) to try and get the author to stop calling children ‘hermaphrodites’, because this is the 21st century, not the 19th. Annabel, moved into great literary acclaim in Canada before it was even published. Written by Kathleen Winter, who in an interview explained how she researched the sausages of Labrador (the remote Canadian localized setting) more than she did about hermaphrodites/intersex. This is because in Canada, having a very local and CANADIAN setting is far more important than for example, doing the equivalent of using ‘faggot’ instead of gay, and having newspaper titles like, “Author writes novel of a faggot growing up in Labrador’ And it helps ignorance like the blog, 'Hermaphrodites in Hollywood' which reviewed the books positive and states in the title statement of the blog: "Hermaphroditism is a sex development disorder in which a person birthed through an incestuous relationship is cursed with both male and female gene tails. They are often called Intersex" With a big banner: Say NO to INCEST.

Errr....fact check much?

So why then is the BBC doing the same bad science, bad assumption? When BBC4 did the radio program: Annabel - HERMAPHRODITE, or the independant ran the story: "Annabel - story of a hermaphrodite raised in labrador"?

As the author said in a interview a few months ago: "Annabel, started with one word: hermaphrodite.

“Someone told me about an intersex child, and she called the child ‘hermaphrodite’ and that’s a term from mythology,” relates Winter over the phone from her Montreal home.

“I had always thought that was a mythological idea, I didn’t know that there were children born intersex (the proper term).

Winter chose not to research the character but let the situation determine the internal and external feelings of Wayne. Essentially, in love with a mythological idea, and that of gender and society, she decided not to do the basic fact checking and let her own bias and ignorance guide her. She reported being astonished that gay, trans and intersex individuals were a large audience which read her book.

Let's compare. How then would another LGBTQI book go? There would be a straight guy and he would start his novel, "Dyke." and says that he didn't talk with any lesbians (nor did Winter talk to ANY intersex individuals, or the Intersex society) but let his ideas of the 'myth' of lesbians and character lead him. "I knew that lesbians are serial killers and ugly, so that is where I started, and then went on to the raping of young girls" Plus Lesbians cut of breasts. Would Lambda support a book like that? Would it be shortlisted for the best books written?

Would a book where lesbians are serial killers by nature get nominated for every major Canadian Award and the Orange Prize int he UK? I simply wish Winter had been honest, as she sets the book in a single out back cabin in one of the most remote areas of Canada. So the book is not so much society and gender but a father who wants a son. And that story has been done well, like Ian Banks' The Wasp Factory. Do the honest story, not a 'myth' of a whole section of society.

Annabel is BAD. But because people don't know about those who are intersex or what intersex means they take bad plots, offensive parts of the book as 'standard' (Intersex a condition which has to do with reproduction or the genetalia, instead of say, a cleft pallete, or dyslexia, or lactose intolerance) So, when 'Wayne' with both genetalia, ends up having a medical crisis because Wayne is due to explode from backed up menstrual blood. Yes, like in Willy Wonka, the character is bloated and red, about to explode like a bad comedy, splattering everyone with blood. And we accept that, when we would not accept that if in the story a girl was 14 and hadn't had a period yet, or had PCOS (a very common condition where periods are often years apart, and may start in the 20's, and is NOT an intersex condition). But we accept it, because we are told that Wayne is an 'other', an 'intersex'. We are told over and over that mild interests in things that belong to the 'women's world' are the sign of Wayne's duality. And we applaud this, a book which informs us that a boy can't be interested in knitting, or anything his mother is interested in UNLESS he is a genetic freak. A main character which barely ‘passes’ as human in a single cabin in the woods. But, we are ever reminded they are NOT human, not like us.

Why? Because Wayne literally FUCKS HIMSELF INTO HERSELF getting pregnant.

Yes, a book, not in a 1950's pulp of fetish mag, where the main character gets themselves PREGNANT. Yup, penis into vagina and woohoo, we have the first self replicating human. It is foreign, it is something that must be destroyed, this baby of Wayne's freakish construct. And so the family rushes to the hospital to abort a baby from someone impregnating themselves. And instead of people going, "Okay, how much drugs did this author do?" Or "You know the term, 'Go fuck yourself' isn't supposed to be a literary award winner." But we accept it, judges accept it, judges who have gone to first rate universities, and written books ALSO don't bother to do the most basic of research and go, 'Oh dear, how must this be resolved?"

And we and gay organizations endorse it, and why not, it was an 'accidental’ impregnation of her/himself. WE believe it because that idea is a urban myth from the time of Peyps and the 17th/18th idea of TERROR, and Horror. These are not people, they are monstrosities, kept in the wild, brutalized to act as a male until their inherently failure at being human exposes them as the sideshow freak they are (ironically, in the other award winning book Middlesex, the author has the character leave the boyfriend and family just after seeing that they are a 'hermaphrodite' on a doctor's note, and thus run off to the sideshow in order to be ‘home’). Those are the homes WE, as a society think they should be, not the home next door, which as intersex conditions are 1 in 1,500, means they are in your class, your school, are next door, not in a carnival somewhere.

What is worse, is Lambda gives this a positive review. I am not sure if they would appreciate a novelist winning awards with a book showing the worst of all stereotypes from two centuries ago about gays and lesbians, but then, when have LGBTQI groups ever REALLY cared to educate themselves on the I?

The authors told 350,000 individuals in North America who are intersex that ‘hey, this is you, you genetic and sub-human freak, and one day, when you end up impregnating yourself, we’ll know who you are.” And the other 300 million were told, Intersex people are freaky, are scary, are best when they know they are different and repress themselves WAY OUT in the snow and wild. And Lambda applauded.

Why do I hate this book so much. Because even now, in a recent interview Winter twittered on about how people can use it to understand the universal 'other' within themselves. To her it remains a myth. She states that even to the end of writing the book, 'Wayne' her 'hermaphrodite' (after a year, she finally started calling Wayne intersex) character was the only one who wasn't 'real' to her.

And that is why I hate the book. Because we are real. And what occurs is real. And having doctors deciding what you are going to do, reporting back on how much sex you had, getting fingered just because a doctor is 'curious' is real. I don't want a guy who thinks women are 'mythological' to write about women. And when you are dealing with a minority which has been historically and continiously exploited and abused, the writer should take EXTRA precaution, because getting it right matters. This woman stood up as a voice for them because she found hermaphrodites like unicorns and didn't think it mattered what she wrote about them. So the facts didn't matter, just her view of gender constructs. Except someone about to be kicked by 10 boys, or 10 girls in a locker room can't say, "I am mythological' Getting expelled from an all girls school for being intersex, you can't go, "I accept my other."

Intersex individuals are abused, coded, sterotyped, and exploited as infants. Often the first memories they have is the pain and emotional trauma of medical and social conformity crushing them down. The one feeling that is so common in intersex children is SHAME. They are the one which did something to make mommy and daddy unhappy, THEY are the ones who must hide, always hide, THEY are the ones who make mommy cry. I remember one case where an 'assigned' boy (where a child is assigned a gender) was to be 'trained' but having anything feminine taken away, and if they persisted in feminine behavoir they would have toys taken away. After a couple months, the room of this six year old had only a bed and a chair, because of 'infractions' and walking past a girls birthday party, they curled up in a ball crying hysterically because it was Pink, and the pink attracted and if the 'assigned boy' reacted or went over, they would be physically punished. And whether he couldn't disappoint his mother and father anymore and couldn't take being hurt anymore, he had a nervous breakdown begging for the pink to be taken away because they wanted it so bad.

Which is why the intersex society says, asks, pleads and begs doctors to wait to assign gender in cases like that. But, there is no theory, or abstract words when a six year old lives in a room devoid of color, a room empty of object because there is no further way to punish them, and they would rather die, than be 'bad' because they like the colour pink.

And that is why I asked the 'genetic' doctor on Vancouver Island what he does. This man who has NO training as a geneticist but a peds doctor with 'an interest', who gets to determine the gender of all intersex babies on the island. I asked if he followed ISNA and international protocols and he said no, he labels gender at birth because that is what he has done for the last 40 years.

Will change ONLY come when those in power in hospitals, and now we see, in literary prize circles, DIE OFF?

Robertson Davies, in his book, fifth business, did a better job, using Jungian archtypes of the male, the female, the angel and the beast in all of us, in talking about the need to accept the intersexual, than any book I have read since.

I wish I could do a three week blog, where each day I explained a different type of intersex condition, but I can’t – because I am in pain that simply never ends, and only grows, and I am dying.

There is no reason for me not to assume that you, the reader of this post, are not intersex. And there is no reason that should bother you. Let’s say you have problems getting pregnant, or infrequent periods, or facial hair, or if male, you have not produced a child yet, or have one leg longer than the other, or came into puberty early, or came into puberty late, or if female, are tall with small breasts, or came into puberty around 15, or are short while your family is not – all signs of intersex. Which means what again? It simply means that you will have a harder time conceiving a child. Or you could have had a smaller penis, or a larger clit when born, and now you don’t. But to doctors, who have pressure from your mother, and the hospital to give you a gender, it is……ambigious. These days, they can do all sorts of MRI’s and such but when most of us were born it was the old ‘Stare at the groin and give it a guess’, and some of those guesses were wrong. Ta-da. So you know what that means? It means you will one day impregnate yourself, maybe while sleeping, the outcome of a nice erotic dream (try to explain the genetics of that child to me), see, isn’t that annoying and offensive?

In case you aren’t up on genetics, I have a lot of what is known as ‘junk’ in my chromosomes. Junk is where there is garbage coding or destroyed coding where there should be good coding. The fact that I am dying of a disease in my genes which can’t be cured is a good indication. As well as the fact that I had two other genetic conditions, one which affected my bones, another my heart and my muscles. Also, I am missing a vertebrae in my back. That’s right, the nerve column of my spine is ‘exposed’ because there is only muscle and not bone around it. And then there is my dead twin, and how one of my arms and perhaps a leg belongs to him.

That’s what happens, there are sometimes two eggs, and instead of one egg splitting and making twins, or two eggs making twins, the two eggs, each hit with a sperm or perhaps with only one fertilized egg join together. And this leaves little markers all over the body. And if the sperm which hit one egg was a Y and the other was an X, the dominant egg determines gender. Except that some of the parts might have XY chromosomes. Does this make people like that a ‘freak’, or a ‘mutation’ – no more or less than the thousands of variations we have in people. I once asked in a large lunch room what people had that was different, and in turned out not one but two people in the lunch room had webbed toes, there was a third nipple, double jointed and all sorts of wonderful variation. This is what it means to be human; that variation.

Does it give me strength to imagine a twin with me, a brother in my arm, who will pull me along a pull bar when I am too weak and need to sleep? A little. If I had gone on living, intersex wouldn't be in my face so much. But when I am monthly prodded and examined, when there is a notation in bold on my file in the Emergency Room, even though it has no significance in comparison to having AV nodes in both heart chambers, or more important, that 65 degrees is room temp for me and at 72 degree I overheat and fall over, red in the face and body. But because it is shoved in front of me, that different is bad, that genetically I am evil, or belong in a circus sideshow. I do as much as you do. If I broke anyone down to the genetic level, I am sure we all have our oddities. I like to think that is the glory of being individual, not what makes us evil, or abnormal, or from the Kingdom of the Wicked.

I have, for the last year or more wanted to write a book of an intersex heroine because everyone takes the IDEA and plays with it, talks about ‘hermaphrodites’ like it isn’t a word which hurts. It is like ‘R’ word or the ‘N’ word but since no one tells you as a child or adult, ‘That isn’t something you say about another person, so shut up, and remember that!’ – because no one speaks, everyone keeps doing it. And in books and in movies the way intersex or hermaphrodites is seen is: if a plot twist is needed, lets drag out the ‘abnormal’ – there is no difference between Frankenstiens’ monster and the modern view of intersex. Noticing that being different scares other people doesn't make you a great writer, it makes you a person who is lucky enough to not have that burnt into you from the scars you have. Or that it hurts those who are marked as different. What would be truly enlightened is to learn the story of the people you know,to learn how this difference affected them.

It is trendy now for some trans individuals to talk about how they wish they were intersex, or how they wish (insert some bizzare idea of what intersex is like). Well, if you really want it, there is plastic surgery and you can get it. Or that intersex ‘proves’ that gender is what you want it to be because ‘there are these guys, like who are girls, or raised as girls but are XY and so that proves…..blah, blah’ Be trans, be the gender you are, because there is no shame in it. But if you are going to talk about others, know that there are plenty of XY females, there are XO females (only 1 chromosome set), there are XXXY females, there are XXYY males, there are XX males, so what? What most intersex women want is to get pregnant, and what many infertile women find out is that they are intersex, but they still want to get pregnant. Maybe an intersex guy wants to have lived a life where he didn’t develop breasts, but then so do the guys with a different medical condition which produce breasts early on. There is a whole fetish around this, ‘chicks with dicks’, which takes intersex, plastic surgery and photoshopping and puts it all in a blender to end up with a fetish. A fetish for something that doesn’t exist in the way it is fetishized.

I remember going with my father when the cult we belonged to had to ‘deal’ with a 14 year old boy who had developed breasts. And what did all these wise MEN decide? That the boy had eaten too much chicken, and he should bind his breast and be repentant. Eating chicken, seriously. What was this guy supposed to do every day in the locker room of P.E.? What was he supposed to do on wedding night? “Honey, I ate too much chicken when I was age 10 or 11” Or would he even be allowed to stay with the ‘faithful’ or be kicked out, if he didn’t kill himself by 18, because his existence was too confusing to those who make sermons.

My reaction? I started eating chicken.

Hey, if it could work for a boy, it could increase mine, right? (I was young, insecure and too trusting) And so ignorance breeds ignorance, and me eating chicken for the next 10 years. That boy wasn’t the ‘Third Sex’, and my arm isn’t the ‘Third Sex’ and all those individuals who put a thesis and a publication ahead of hundreds of thousands of individuals and their experiences are not just bad academics, bad researchers, bad theorists, but insensitive and callous human beings. They are the kind I hope will challenge themselves to be more than there are now.

If I was going to say anything to teens who were struggling with being intersex I would say: ‘Write me, because saying ‘It gets better doesn’t get you through feeling all alone.’ Write me, and then you won’t be alone anymore. Oh, and no, you can't get yourself pregnant.’

Failure frustrations, living on Estates and period peices

2011-11-05T23:40:00.000-07:00

There is nothing so frustrating as a failure; particularly when I have failed more than just myself. I got up on Friday after a week of ‘not quite right’ days, and had the plans for not only the day, but the evening, the next two days as well. It mattered, because Linda’s time is not something I want to waste, nor is seeing Cheryl, who makes a special effort to come.

I decided to sleep early, and sleep after 4 hours instead of 6, so the rest of the day would go well, and thus the weekend. I talked to Linda about having curry when I got up and then…well, then things went like going a few degrees off of destination, which becomes the widening gyre.

I wish there was some way of making an S.O.S. for the brain beyond telling Linda what to look for, what my limits are. But after a long week for her, and daily applying for jobs, which now are our only hope of a future which does not continue to get worse, I don’t know if she recognized them.

And so, I simply never left the bathroom until I was very ill, hallucinating and woke to be told that yes, all would be to plan except no, nothing would be to plan, and so it went, every time I woke. I wasn’t even in my bed.

Until at 8:00 pm or so, 24 hours later, I got up to a stack of failures: so much for putting up the DVD’s on ebay – the ones I watch and get from the UK and Asia, including the award winning Downton Abbey, Swing Girls (by the director/writer of Waterboys – Japanese), The Door – a sort of Australian film akin to Goonies, and a host more. I will try to put them up tonight, so they can be purchased and sent out as soon as possible.

Downton Abbey, is less a period piece (though it is one of those, the house is Welsh, but not in the series, and very similar to the estate the University at Cardiff owns, including the gravel walk, the servant quarters, the main staircase, library and all) than full scale war on various fronts, with the servants using the Lord and vice versa. The TV series won all hosts of awards, and the second series is out on DVD in the US in Feb, later November in the UK. For me it was doubly intriguing as the show expects a certain amount of historical knowledge (at breakfast they refer to ‘that Serbian killed’, who is of course, ArchDuke Ferdinand) and having lived several times over the years at the Estate similar. Except, as the estate the university owns is from two art rich sister who never married, I either could use the library to study, to play the harpsichord, or go into the lounge where many of the larger original Rodin sculptures are, to play the piano. Afternoons of course spent playing croquet on a course built there, forever green. I think peacocks roamed the estates. The evening in the main room, with the main stairwell and drinking port under the works of art or tapestry too large or not significant enough for the Art Museum.

I always went with my own port, and usually a few works of decadent literature (if you live in the EU, I recommend the London Library, one of the few subscription libraries left, and a large selection of both 'proper' and 'ladies' literature - meaning the decadent, ghost stories, horror tales, and novels mocking the Austins, written 110 years ago, where self aware characters decide what to do based entirely on literary convention. During my times on the Estate, I stayed in a family room, much like the three sisters in Downton, then a week in the servant’s quarters, which I take it they shared unless a valet or a headmistress (I did not share). Then time in the cottage for the huntsman, I think, and then another of the guest rooms. The main issue with these houses was adding things in, which meant electricity wasn’t bad, but bathrooms were never in the room and worse yet, never seemed quite attached to the rest of the building, always ensuring both a steady breeze up the backside. I did keep a bag for ‘feminine hygiene’ as it showed a lady with full double or triple layer, perhaps 170 years ago, with hat and a decorative brollie, holding up a smaller replica of the bag with a smile. I am oft amused at how the more something in the ‘forbidden female realm’ like bloody tampons, the more it will be dressed up like joy everlasting.

I just finished a 3 movie series on the ideas of HG Wells, also period, set in the Imperial College, where first rate UK actors are scientists and laborers, and Wells is wooing a female scientist and drawn into some of the ‘curious experiments and outcomes’. I shall start to work as soon as I take my evens’ (or was that for my ‘elevens’? And this is Tea, or rather Supper – in Wales it is always tea – unless you meet with the posh accent set at the fundraising event for ‘certain’ alumni, which was a private gathering to hear a famous tenor – I snuck in by helping people to their seats – you see, service does have some pluses).

How I learned to wear jeans.

2011-11-03T22:03:00.000-07:00

Over a year ago, my body began to experience edema, which despite being elevated, continued and increased. I tried medication to reduce the edema at the turn of the year but instead of getting better, the edema got worse.

But what bothered me the most was: Jeans.

Actually what bothered me the most was I lose life, then dignity, then all choices, even down to my cells, my body is taken away from me.

Edema meant that whether I was overweight or not, I could no longer wear jeans.

I found that if I exercised every 10 days for 2-3 hours, then the Edema would recede and then come back. So I exercised. Every week, in the summer, in the worst weeks, I always exercised.

Now, after not eating many meals a week for so many weeks, I am now sitting on my pelvic bones. I am essentially in my anorexic state, except I have this torso edema, and leg edema.

I really, really wanted to wear jeans, just put them on and be cool again – not PJ’s, not sweats, but JEANS.

So I worked, and exercised, often every 5 days, week after week, month after month. And my lower legs were cleared of the edema.

What I have is cellular and brain edema, which is the collapsing of the cells and the fluid expanding. It, like the enlargement of my organs, which is what shoves out those organs as a ‘pot’ is part of the final stages of a terminal disease. My heart, to which I will get an echo of in a few weeks, is likely spending 20+ years each year to keep me alive.

The GP, who deals primarily with terminal cases said that no, there was no hope for the edema. He added that ANYWAY, ‘once the edema breaks and stretches the muscles, it is pointless, the entire body of muscles would need to be rebuilt entirely…’

To someone else that might be disappointing, to me it was encouraging. The doctor essentially said that if I can rebuilt each muscle from scratch…then the edema in the legs would reduce enough to wear jeans.

So, that was the plan, to rebuild the legs entirely, the gluts and my ass, from scratch. And week by week, month by month, it is what I did. I needed to be up, to rebuild the parts of my legs that I can’t feel but which seem to work somehow. I talked to some SCI individuals and found others who had no feeling but could use a leg or muscles. “As long as I don’t think about it, it seems to work.” One said about walking a short distance.

I trained, and eventually I did the Terry Fox. The next day, I tried on jeans. I could get them up to the thighs but that was it. Too much edema.

So I kept working and every month or two, I would try on the jeans, and eventually I could get them all the way up, and button them, but they weren’t comfortable. I took them off and went back to exercising. Up at the YMCA, I go to the training machines and do my sit ups and push ups out in public. I needed the exercise bikes and the treadmills. I could do a half an hour on the bike, where they strap my feet to the pedals and I have a back and arm rests. The treadmill was harder. I had to walk at a steady pace, or the clip for the emergency stop yanks out and the treadmill comes to a dead stop. I was trying to balance, and the first weeks I was hunched over grabbing to the arm rests.

The last three weeks, I have been working on having my body up as much as possible with my arms swinging and the pace steady. But like the picture here, I often have to keep an arm on the treadmill to stop from falling over, or falling off the back. I only exercise AFTER I am sweating, by doing the 160 sit ups and 140-160 push ups as a ‘warm up’.

I exercised on Monday. I went out on Tuesday. On Tuesday I wore jeans, they felt good.

You asked for the ears and the pictures I took didn’t show the jeans so here is another picture of me, with the jeans and hoodie with ears. The walker is in the front of the picture.

When I say that I keep going, that I have focus, this is what I mean. I wanted to wear jeans. I wanted to not have edema. I can’t stop my body dying, or the cellular edema, but thanks to those who came with me to the gym, I am wearing jeans again. They are the same jeans I wore when I first had to use the wheelchair. The jeans I got for going to the epee fencing competitions. Foxy jeans!

And maybe 60 or 70 weeks of pain, and hurting so bad I can’t sleep, is a stupid thing to do in order to wear jeans. All the sweat, and the tears. But I’m using a treadmill, and though I might be unconscious for a day after a date, I’m still fighting, in the ways I can, to have the best quality and be pulchritudinous too. I want to dazzle, to radiate with a smile, to live a life where I get choices, and it isn’t just wearing sweats.

Yes, I spent over a year so that I could say ‘It isn’t impossible until I say it is impossible.” I’m dying, it hurts all the time, and nothing seems to be getting better, nothing improves, nothing to be happy about. But this, this I can do.

Don’t you get it: I WON!

Random Pick-up and Date Nite

2011-11-02T23:39:00.000-07:00

First, I joined NaBloPoMo, while sounding like something illegal in 11 states, is supposed to be November Blogging (Po?) Month. And I was supposed to Blog everyday. Including yesterday.

I like getting my mistakes, like homework, done early.

Second, I had a chance to go out and I took it: Date Nite.

Problem, for the last 24+ months our budget has been grim (we recycle half licked throat lozenges). Seriously, everything is broken. I am getting budget oxygen: I get O 1.5 because I can’t afford O2 anymore (Ba-dum-BUM!). But there was a groupon from about 8 months ago for Baja Grill, and we stopped by the library on the way there. I had done my exercising Monday, which means both low edema and very pert breasts. We stopped by the library on the way and not only made a score on the 3 day renters (free, but only for three days): X-men: first class (B+), Thor (Pretty...and pretty shallow, B), Green Hornet (C+) and Extraordinary Measures. Sorry, no Hannah but saw Young Victoria last week (A!!).

All three shelves of the three day films were full. And for some reason, when I am in pain, I laugh. The day after a workout I am in pain. So, in trying to get to the bottom shelf, I was slowly, sliding down, until I got onto a knee, giggling the whole way, as there was one guy to the right and a woman to the left (and X: men and Thor were on the bottom shelf). The guy looked down at the pert breasts and said, “Actually, I’m married, but…” which he probably thought I then giggled in response. I was instead thinking ‘Oh my gluts, how the heck am I getting back up?’ Linda seems to think he was offering a ‘fling’ (I thought he meant us getting married if he wasn’t – Linda is more, um, earthy that way, and far more up on the whole flirting it seems).

Then it was on to the Baja Grill which has one of Victoria cities 28 wheelchair parking spots directly opposite (the library has one as well). They have a wheelchair entrance and were just cleaning up after a dinner event. They had drinks for $4 and $4 taco’s (with cabbage, which was actually very yummie, and chunks of steak instead of ground beef). In case you are wondering why I have green lines on me, it is because they had club laser lighting bursts which would have made the entire cat shelter of felines happy. I am wearing my arm warmers and my H-Angry h.naoto hoodie which has ears on the hood. Note how the cleavage that seems to go up and WAY up, purple top, feather earring and braid/plait.

Victoria has a NEW accessible club, as the Baja Grill runs a weekend restaurant, then re-opens like 12:30 and clubs until 3:00 am or so, serving Taco’s, and light food with drinks. As several restaurants have opened and closed in this location, the idea of having both a club and a restaurant in the same local for the same rent seems a solid business plan. He told me some of the people who come clubbing in wheelchairs, and they have wheelchair toilets upstairs or down, and an elevator so access from three venues. And that fits with my wake schedule. It is at 535 Yates St. The entrée was $11, for a large chicken burrito entree, which we split with two tacos, and a fresh cilantro salsa and chip for $2. They had a mango hot sauce which was lovely, on the three spots on my tongue (front, and two spots on the right) that can taste hot sauce. So affordable and private as they do most business on weekends and then special events.

It took me about 22 hours to recover from going out but, I went out! So no regrets since better to do something than to think about what could have been done.

That’s it, back to Green Hornet, and I will see you tomorrow (maybe this weekend we can go to the Scottish Pub: Linda said as we passed it going to Baja Grill, "Oh, we could go here, I think it is an Irish bar"

I said, pointing to the glass etching, "I'm thinking the 'Scottish Bar' on every window must confuse them a bit, then").

Live large, live wild, be known for your word

2011-10-30T23:46:00.000-07:00

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.

The Today's (also blog award nomination deadline)

2011-10-29T22:12:00.000-07:00

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).

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

2011-10-28T17:16:00.000-07:00

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.

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

2011-10-24T04:02:00.000-07:00

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.

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

2011-10-20T19:00:00.000-07:00

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?

16 hours: Hypothermia to climbing Moss Rock

2011-10-17T17:43:00.000-07:00

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.

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

2011-10-15T10:33:00.000-07:00

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

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

2011-10-12T23:52:00.000-07:00

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.

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

2011-10-10T23:57:00.000-07:00

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!

WolfHound: A Russian film epic akin to Beowulf

2011-10-06T16:04:00.000-07:00

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.

Postcards and Power structures

2011-10-03T21:23:00.000-07:00

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?

Wheelchair Bowling (and a little death).

2011-09-29T07:18:00.000-07:00

This week has been all about Death and control. I lose control when I sleep through all of Tuesday, but others, such as the Palliative in Victoria and other caregiving demand more and more control until words like ‘allowed’, ‘will let you’ and ‘will decide’ infiltrate sentences. Though care groups are set up until a broad invite, there is usually a gatekeeper, likely the moderator or a medical person appointed who ‘will decide’ if you are acceptable. In Palliative, though the people are employed to ASSIST and improve the quality of life of the person dying, and it is stated often, that would make the person dying the one who calls the shots. Is that something you can imagine? Particularly if there are some senior RN’s in their 50’s and 60’s and see the PEOPLE (they like to call them ‘files’ or ‘clients’ or ‘bed’) come and go, but they protect their small kingdom. So do many others when care giving is involved.

Should I lie here and not talk about my plans for ending my life in a dozen hours and talk about bowling instead? Or talk about the emotions that make me want to speed up, or at least control a fast moving schedule? I live now not because of any care made by any doctor (treatment is not what I am receiving, but pain killers and band aids), but because I pushed myself very hard to live. But if I live, but all that I desire to live for: quality of life, friends, energy, spending time doing things, spending time with those I love – if all that goes away, then why keep tormenting myself?

Thank you for raising $190 for Cancer with the Terry Fox, it was almost double the goal.

Ah, awkward silence means that bowling wins rather than the uncomfortable feeling of not knowing what to say.

I went bowling. It took two months, two trips to Port Angeles, planning but not a great deal of money once there to accomplish. Linda and Cheryl also came. Victoria does not have a 10 pin bowling alley as that was wiped out for a condo and business part. Joy, something we were missing, I am sure. The alley in Port Angeles is a wee dodgy, with a bar, but it does have a lane, by the side and I found a large finger ball which weighed about 6-8 lbs, none of the 10 or 12 for me. The idea of bowling is to throw the ball, which is kept on track by back and side spin and it hits between the first and second pin to get a strike, or knock a lot down. If you knock all down on the second ball it is a spare. Gutter-balls go into the gutter on each side of the lane and knock down no balls.

This was a first for me, bowling from the wheelchair and it was hard. Plus I sucked, since it was my first time. Standing bowling I can do, except I can’t stand (the damaged caused to my knee and legs from the Terry Fox precludes doing that anymore). And getting the spin and momentum from the ball is hard indeed sitting down. Yet it is an official wheelchair sport and popular compared to many, as it available without a lot of specialized equipment.

I got gutterballs one after another after another – by the fifth frame I had thrown one ball that made it to the end to knock down pins (9 gutterballs). So I asked them to raise the ‘bars’ – if you SUCK at bowling or want to have fun in the wheelchair use the raised bars which need to be set by the staff to come up on your turn. These are barriers to stop the ball going into the gutter so it is like pool/snooker, you can end up with a strike on the rebound.
I found in the UK, where 10 pin bowling is not common, that a church, or mixed age outing with those who have to use walkers or other aids, having the bars up only makes a game which is boring and sad (who wants to pay to show everyone that you can only throw in the gutter), fun and exciting as even a bad throw can get points. It is used for kids often but I have used it for adults in the UK and USA with positive results – it makes new players have fun, which is the point of bowling. For those who have arthritis, and can’t throw the ball, there is a ‘ball slide’ where the ball is placed, you aim, and then with a small push, it slides down a ramp and off toward the pins. I have used this with adults, particularly those who have hip problems or movement and shoulder or joint pain. Again, it makes a outing for all ages and abilities (the staff has this, again usually for kids, but my policy is that adaptive equipment is not age limited, and YOU are paying, so have fun!).

Linda was pretty consistent and took the lead in both games. Linda got some spares and one strike, learning to lower her knees. Cheryl had the same sort of curve as I get, a slow start, good middle, and then as fatigue hits, more erratic, but she finished well and I think we all improved over the first game.
For me, there was two scorekeeping: what I threw which went straight, and what I threw which rebounded into a score. The best I did for straight throws was a spare (all down in two throws) huzzah! After two games I could throw straight down about 50% of the time, instead of 10% at the start. While the worse I threw, the better the score on rebound. The best/worse was a ball which gripped my thumb, got thrown almost sideways and made THREE rebounds on the way down…to get a strike! I was ashamed as I had groaned with the ‘what an ‘ack’ throw’ and then I get full points for it – bah! Next time I will use the gutter blockers for the first game and none for the second.

I do recommend bowling as an inexpensive group activity which fits all ages and abilities. I enjoy it and enjoy the social aspects as well. Wheelchair bowling is very hard, and I find no cross over skills at all, but then, learning something new, while embarrassing at first, is something good to do often. I would like to challenge myself to do more new things, however humiliating.

Wheelchair Bowling and upcoming attractions

2011-09-26T14:33:00.000-07:00

I’ve not been writing blogs because I’ve been sick. I get sick a lot now. That means inability to move, stop of body functioning, including organ function and heart erratic and pain sufficient to keep me from sleeping. Without medication every 3-6 hours I simply can’t keep functioning and after two days of that, I have completely loss of autonomic function, which would lead to death. So ‘bed days’ are like ‘dead days’ as I can’t sleep that long and if I don’t have the body and medication controlled closely, three days, or four max. I have learned over the last three days that I would MUCH rather my diaphragm fail and suffocate to death than have heart or heat problems for three days.

Caregiving stress and abuse is reported at the same percentage of men who say they have ‘masturbated sometime in their life’ – which is 92%. Even in the high end care homes, investigations found that your $6000 or $8,000 a month still ends up with 72-90% abuse of at least 3 incidents. If it is the special wing for dementia, the abuse percentage is always in the 90%+. It is just that no one talks about it.

Talking to someone tapped in about the police they said that the reason no clear instructions or guidelines on what constitutes ‘neglect of care’ or ‘withdrawal of care’ or comes in to give basic training once the disability provision in granted is because of ongoing cases. With so many cases going through the courts, including the euthanasia case at the supreme court level, if a official guideline is created, then it has a knock on effect for all cases as it can be used legally. And domestic violence and abuse in care giving are two different pathways in the law.

So the open dirty secret continues, where coming to work at a facility or coming home after a bad day, with financial problems, having the worst day, it is easy for that foul mood to end up with screaming at the one person who can’t scream back.

Linda and I care about each other. I am facing some rapid and scary degeneration. Linda is working on talking more, because without it there is no way to know what is accidental, what is ‘I just don’t care’ and what is ‘oh, you make me angry, so fine!’ When trying to step over someone or lift the head, the emotion and the pain outcome can make a huge difference. Communication helps, but being in some horrid pain already can skew the view (my view). There really is no simple answer, nor sadly and with some anger, any social support. When care agencies and the police won't print up what IS an acceptable standard of care lest their workers are held liable if they don't do it, and when there are literally 50+ caregivers coming in and out of the apartment a month, abuse will occur. Like the caregiver who found how Fentynal turns sound into pain 'interesting' and so would make various sounds to see how badly it would hurt me. Yeah, paid professional caregiver. Yet, she will not even get a reprimand, and the police hem and shuffle when asked if I should call them about this - which seemed to me a form a deliberate sadism: she crinkles plastic and watches me flinch, "Oh, so that hurts too, fancinating.", she scratches different fabrics, she plays with coins, bangs metal on metal. For a person with Neuropathy, that ended up hurting far more than having a hand stepped on (which after talking to Linda, was accidental, she was not aware she had done it so focused was she on going to work). For us, it was a call of love to communication, yet police files get involved. For the worker...she gets her $40 and moves on. Dr. Hell, in the last stages of ALS, complained about being abused by his caregiver, action was not taken because without clear guidelines, there can't be.

If you leave a child, or abandon a child, don't feed them, that's abuse - outlined in the child abuse Canada law. If you, as beacon workers did 3 times in 2 weeks, leave me naked, without food that day, no hope of food until perhaps the next day, and passed out on the floor (having workers leave while I am passed out has happened so often it doesn't bear even writing down, not 911, not check for breathing just 'my shift is over', I guess, when I come to, they are gone), that is not techically 'abuse' because there is no outlined laws or guidelines for individuals, no matter how dependant. IF you have careworkers, you will end up have a loss of care, withdrawl of care, negligence, etc - it simply hurts a lot more when it happens from those you love and who love you.

Linda is, beyond working full time, caregiving me, training up to 14 new careworkers a week, and doing job applications to improve our life quality and decrease the stress – because when you have ambulance services threatening to send you to collection agencies, as an example of how bad trying to pay for tens of thousands of dollars of medications annually when on a capped unemployment income LESS than the cost of meds, and a 13% tax on everything, there is stress. Time for me, time for Linda, time for the job, Time to come up with whole new plans as my conditions worsen, that’s all hard. This isn’t the TV drama of the week with a giant family and everyone trading off care giving, so no stress.

So now that it is rainy and blowing, think back to a few weeks ago in sunny Port Angeles. I had been trying to go bowling in Port Angeles for a while as there is no 10 pin bowling in Victoria. And I wanted to try out wheelchair bowling. And the ADA means a bowling alley in the US is going to be accessible. So I have lots of little bits, hours here and there, with the things I spent weeks and months planning. So tomorrow, I hope, it is a blog post about wheelchair bowling.

Ill in body and heart, caregiving

2011-09-22T05:58:00.000-07:00

I know the soul is aided,
Sometimes by the heart’s unrest,
And to grow means often to suffer –

I’m not well, but when someone has to breathe for you daily up to and over an hour an a day using a ambi-bag, fitting over the face and nose, and counting off the seconds and making sure the air goes in and the air comes out, then not recovered.

If I have a regret it is that I feel ever more distant to the person I love most of all. I try to ensure her sleep, and exercise, and that she can do her work without worry. I spent my savings for a fall trip, as it is when I can best go out in the sun, and it be cool enough not to overheat. I spent it on her, and others, gifts for Cheryl and Rachel, and Christianne, and GirlwithCane, and the other names which should come to mind, but don’t. But most was for her, over a month in saving so she can have a fleece blanket for her bed. And a movie for us to watch together, called ‘The hole’, rated 12, it was from the UK, and a bit like the Goonies. She said she didn’t like it.

I hope I’ll try again. Except I’ve been waiting and trying for months and the most I know of her is that she says about the hour she kept me alive, which I am grateful is that ‘that was a wasted 90 minutes’.

The day I came home from the practice for the 10K, she left me on the floor, stepping on me, kicking me, angry. So burned with anger until she told someone at work and they couldn’t understand why she wouldn’t be happy. She shared how she felt with a person at work, and shared what she felt, and it changed how she saw things. With me, she just stepped on my hand. And then kicked me before she left. I know so much about her anger, and so little about her tenderness.

I wish with all my being, with all that I am that her feelings shared and so my knowledge was reversed, and that my heart did not beat with terror when she comes up, and looms over me, her forehead creased with her anger, until I can’t sleep anymore. Until I am always afraid.

I wait, and wait, for her to hold my hand during the film, during any film. I wait for her to hold me, to hug me from behind, to start with slow touches, safe touches, until my body is not scared of her. But she doesn’t come, and I only know her anger and irritation, and the pain she gives, perhaps not knowing, perhaps not caring, when she feels like that.

I get to eat once a day. From Sunday night until now it has twice been over 24 hours between meals. Sometimes I get a salad or sandwich.

There are all new workers, as 3 more, the last of the regulars, are gone. I got an emergency overnighter, so she could sleep full 8 hours to counter the night of helping me breathe. She doesn’t thank, she doesn’t tell me if she even slept well. The overnighter was something to be endured, no food, no coming when called. Like most workers now that the regulars are gone, I get the ones which are floating around, having been banned by every one else. And they wear me down. I don’t get enough sleep, I don’t get food,

I am lonely and desperate. When I get depressed, she gets angry at me, impatient, irritated that I have not figured out what I am supposed to do and done it. There is no flex which allows me to be ill or depressed, and she is gone again, counseling for her anger. She ‘lashes out’, she calls it.

I love her, I love her, I care about her, I want to comfort her, I want to support her so we have more ups than downs. I want to know her heart, and so I offer mine, daily.
I tell her how I feel. She tells me who she called. I tell her how things make me feel. She tells me what I should do, or have done by the time she returns. She is mean, and I don't know why. She says things or does things until I cry, and I cry almost every day.

This isn’t the caregiving story you thought was going on. This isn’t how I thought it would be either. She however is here, when Murray and Pat, my parents, and Peter and Susan, my brother and sister in law, are not. My parents do not call, do not write, do not email, nor does my brother and they have not for years, even when they lived in the same city - not once I got sick. Even in palliative state, the RN’s don’t come, care managers don't come, and they see getting me into palliative as a sort of dumping, yet nothing changes. No support for either of us I want us to just be able to talk, about what she thinks, about what she feels. But she doesn’t say that. And the dementia makes me feel more, and more, and she lashes out more and more.

I am proud of her: that she stayed when every other friend we knew left, including family. The Terry Fox two years ago was the last time I saw a glimpse of my parents. And going from a great job with benefits to limited unemployment, and then a temporary job with no benefits, she is still coping though when the pain medication doesn’t show for a week, that’s bad. But considering all that she manages, I’m proud of her by the day and hour, and as I see her test her own limits, or challenges herself to grow.

She gets angry at me, or worse, and more common now, simply stopping talking at all, and walking out, which she does so frequently during the small times we are together. Living with a stranger is hard. Hard when the only time I have seen her smile at me in the last three days is when she was showing me to a new evening worker, as she is big at being a ‘good person’ to outsiders. I want her to have time for herself. I want her to want to be with me. But that's her choice.

I can make the time, even arrange it so she has her time, but she hasn’t told me what she thinks or her heart, or what she feels about me, and life now and palliative and dying for several months. She asked me to tell her two things I wanted to talk about last week I think. The first was Palliative. But we never talked. And the champagne to celebrate the Terry Fox is still in the fridge. And the champagne for our anniversary is still on the rack.

It is hard to open up knowing that you could be hurt by that person, knowing you have a good chance of being hurt by that person. And I have hurt her in the past. And she hurts me every day. And I keep telling her my feelings and she keeps telling me the weather, and using my feelings to hurt me. And I haven’t said anything for years to anyone, because who would I tell? Elizabeth is the one with the public flaws, and Linda the saint – everyone acts like that is all it could ever be: Beth the fuckup, and Linda the angel. Not Linda so controlling that she tells me how I feel, tells me what I think, and goes two days without asking a single question about me, simply telling me how I am, who I am, what I feel, until I give up counting hours, encounters and days as her assumptions, so far off it hurts in the bones, tell me she doesn't want to know. And because she tells me that too, "I don't want to know." The Linda that stops me from speaking, withdraws care, food, medicine, pain medication, and ‘ssssssssssss’ over me if I try to speak.

It took me this far down to say her name. Linda. Linda my love. Linda my all in all. I know how empty my soul is. How is yours?

I tell her how I feel. I tell her that I am hurting. She tells me to shut up. I tell her I care about her, she walks out.

I want it only to be the time for us, to manage the duties and then throw the world away and spend time doing what pleases us, or just lying together on the couch. This is how the last weeks should be. I don’t know why things are so hard, why I got this disease, why I worked in the ONE country that doesn’t have a reciprocal agreement so I don’t get a disability pension, and can’t help her in carrying the burdens, to take them off her so that she smiles again. And so that I don’t fear her so.

It will take a commitment, and planning, and determination to be close and supportive as we once were. But then, all things that are worth doing together require that.

She is worth it, she is always worth it. If only she would take a chance too.

“Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow.”
Anon.

New Record in Terry Fox 5K

2011-09-18T15:06:00.000-07:00

1:10:05: One hour, ten minutes and five seconds. It is my new record for jog/walking the five K. The Terry Fox was a 5K to increase numbers. So bigger this year but later in the day at 10:30, and the rain was gone, the sun was shining. Some people had hair shaved for Cancer charity fundraising including Olympic medal winner Silken Laumann (whose went on to get bronze instead of to the hospital after a injury that shredded her leg to the bone).

I ran for the first kilometer with a woman with a leg amputation but she was powering on and by 2 kilometers she left me in the dust. Due to the sun, I had a ‘cool bandana’ with crystals to cool my brain stem, and water poured over me to cool my body. My hands swelled, so much that I couldn’t hold a drink but took water when I could, with Linda and then Cheryl using the wheelchair as a portable station for holding drinks, bandana’s, oxygen, and even an ambi-bag for breathing.

While the event isn’t timed, it doesn’t stop some people from getting ‘serious’ from the 7 or 8 year old in this picture doing stretches, to the runners flying past, fingers on their neck pulse to see if they are reaching ‘optimum heart rate.’ But for most it was a family event or personal remembrance to raise funds or awareness of cancer. There were two wheelchairs besides mine. The guy with the hip amputation was back, having seen him in 2008, 2009 and this year, doing the 5K on crutches. With sun and no sweating, I quickly swelled up all over my body, and not only was I taller than they rest but a blimp to boot.
Some of the racers, or walkers thought the event was more of a fashion show, or fitness show but I was running my race for my reasons, just like a lot of people on this particular race. The scenery was nice, though I spent most time trying to stay upright. My left side didn’t respond much, either in arm or leg movement, and by the hill at 3.5 kilometers we were at the back. But just getting PAST the cemetery was a motivation. Cheerful place to put in the center of a cancer 5K, no?
I was wearing Columbia hiking shoes/boots as they had the support of my tendon and ankles to stop them rolling over. When I lost balance, I would suddenly go sidewise a few steps, or diagonally. Having the support to get my balance back and heading forward helped. Having Linda there to provide water to pour over my head and drink, as well as Cheryl to pace helped a lot. I am tall, I felt like I was the tallest person there. Kids stared, I waved, teens stared, people stared, oh well.

The people doing the 10K had passed us and finished, and so had mostly everyone else. People were heading home in their cars, but we were still going. One guy running by yelled at me, ‘You’re holding up the end of the race.’ Classy.
As we were alone, Linda and I, then Cheryl and I played the ‘what damage or diseases DON’T I have.’ Game. After an hour of pain and sun, with people gawking at the wheel chair and me, this was humor.

‘I don’t have Lupus!’

‘or HIV’ said Linda

‘Cancer, though after four years without even an x-ray, who knows’

‘hmmmm,’

‘Well, lets see, damage to heart, lungs," I staggered on like a wound up disability doll, continued, "oh and the circulatory system, blood, brain, nerves, spine,”

‘liver’ Linda added, as the blood tests showed that was damaged.

‘Kidney, connective tissue’, I added, from the blood test results

‘Immune compromised.’ Linda added also from the blood tests

‘Brain Damage, stroke, seizure disorders, cellular edema’

‘I don’t have Bird Flu!’ I finished.

The final stretch was uphill but Linda was up ahead at the finish line, waiting for us. She did the whole thing with a backpack full of medical supplies to support me. Thanks.

I did it, (and so did Cheryl and Linda) without stopping or resting, I went on and on, as fast as I could. I thought a lot about Terry Fox as people passed me, or stared. I'm going as fast as I can. Terry used to write and say that a lot too.

I sat in the chair and Linda got oranges and water. After three oranges, I wheeled out, starting the 5K I was to do in my wheelchair. 5K walking/5K wheeling, makes sense right? Apparently not so much to Linda.

I wheeled a bit (Linda later showed me, it was only 50 yards or so), and rested in the shade of a tree so the cool breeze from the ocean could cool my core. And that is all I remember.

I passed out, Linda saw me unconscious from where she was at the finish line, came over and wheeled me to the St. John’s ambulance. I wasn’t breathing and passing out. There was a guy doing training who learned how to do the ambi-bag. He was doing it for 10 minutes while I had stopped breathing. The supervisor saw the one in Linda’s bag while she was getting medication and Cheryl noticed and told him, “Well, you’re already using yours.” (I was told this after, by Linda and Cheryl) The EMT's seemed a little surprised that we had a mobile ambulance in backpacks and under the wheelchair.

They called the Ambulance Service (two of them).

I woke up as Linda was finishing explaining my disease to the St. John’s people and the EMT’s. “And she walked it??” The senior guy asked, “The WHOLE way?”

Linda said yes and they looked at me, and I gave them a thumbs up and said, “A-okay”, which would have been more convincing if I had not been out for about a half hour. The EMT’s allowed me to leave, though in taking the blood for the diabetes test, the blood pressure from that needle stick flowed down my fingers, and onto my other hand. I guess the pressure was a little HIGH.

Happy we were not going to spend 3 hours in the hospital, we went to Beacon Drive in instead and had Ice Cream. I had a hot fudge Sundae.This was MUCH better than the hospital. After that it was only home, an assisted shower after I post this and then off to bed!

Thanks for your support. I set a new record for palliative…er, system dying, autonomic function impaired individuals for the 5K. Woot! (Now, for the next few days, I just have the pay the cost, sleeping in my Hello Kitty Pirate Sleep shirt I love how she has the muli-piercing earring AND the heart shaped eye patch, although if you are doing the whole skull and bones of dead people, adding a pink bow tends to diminish the fear factor).

10:30 for liftoff!

2011-09-18T04:15:00.000-07:00

I am not in the hospital, and I am not dead, ergo, I am taking off at 10:30 at Mile zero - having some pasta for energy boost! Thanks for the $140 raised so far for cancer research and treatment.

Onward!