Serenity Rose, my Asexual Years, books bound with human skin and men on Linda's bed

I’m reading Serenity Rose, which I got used for $1 from my wish list, it is “my court appointed psychologist suggested journaling as a means of ‘working through the negativity.’ Only Diaries are way too girly so I’m making a comic book instead.” About a girl in her 20-something who is a witch, called Elizabeth Rose a.k.a. Serenity Rose.

My copy is a library book, though on the description they said it wasn’t. After three week’s wait that is really irritating. Except this book has purple glitter on EVERY page. There isn’t a lot, it starts to become ‘Where’s Waldo’, and I’m trying to figure out if it is from some goth teen’s fingers. “Geez, when they say glitter gets everywhere, they aren’t kidding.” And I am glad that while at Sakura-con, that woman at the Dior counter didn’t convince me to buy the glitter purple mascara (particularly as I am following the trail of purple glitter through this strange/cute comic). From S.R.: “Another time they told me I could have ‘unnatural’ hair colors in class, so I fixed it like they wanted and they said that’s fine but could I do that in private from now on.”

I wonder if I would drop my jeans and start a dye job on my snatch in the principal’s office (he’s a PRINCE and your PAL – how I was taught to spell that word)? I decide that I probably would.

Why is Serenity Rose real while Katniss of the Hunger Games isn't? Perhaps it is the combination of lethality with determined ghosting through school days, insecurity too large to hide completely. Katniss can't make up her mind what to wear, much less hunt and kill, she was one of the girls who wore the best because she was told what was 'in' becuase she had a father figure and money. Serenity Rose and the mystery reader ahead of me know that life is made up of short bursts of brutality which has fall out, and nothing can stop that.

I had to cycle a couple miles to school. I would bring road kill into biology class. I think I was trying to show the teacher that I was 'keen'. This did my rep no good at all. Just another story when they point the fingers at you, and say, "Did you hear?" In ninth grade, we went to Cal Tech and saw electron microscopes and experiments with mice.  The head scientist killed live mice. I was the school photographer, because it allowed me to keep something in front of my face. I asked the scientist, 'Can you kill it again, I didn't get the shot.' And he picked up another mouse and snapped the neck, and skinned it in a smooth motion.

I looked up and my ninth grade teacher was staring at me instead of the mice. "You might make a good war photographer." he said in a funny tone with his head cocked, "You seem to have the....eh, uh want the shot."

Two (three?) days ago I had a three hour test in my bed from a psychologist and psychiatrist. One said he ‘appreciated how I was deconstructing the assumptive nature of the test.’  Am I?  Mostly I’m in my own world, and I think I am getting things wrong as one test I am asked the connection between words, and told two words. I think of The Little Prince and the picture of an elephant in a boa constrictor and tell them that the connection of the two words is that they start with a tall word and then go flat. I also point out that both words have two vowels. One of the two men starts laughing while the other writing. Words are floating in my head, going round and upside down. It reminds me of tests when I was a kid.

I have to count down from 100 by 7. They stop me at negative 5 and ask how many are left. How many of what? And how many 7’s. Apparently I got that right. It seems that the need to understand the importance of the number 7 is something I have passed.

I read a bit more of Serenity Rose and follow the tale, plus the clustering of purple glitter. I think I used wear glitter. Stuff like that is fun for a night, now I don’t do night’s out. I’ve just woken from 14 hours of sleeping.

I’ve spent my life hoping that the NEXT group, like junior high, would be smart and get me. But no. Then I hoped that they would be in high school. Nope, just broken into: those who make fun of you, those too absorbed in themselves to care if I exist, those who pick on me, and those who seem to be bad imitations of who ever the pack leader they follow. I remember the first time I met Linda and after I liked her she invited me out to the farm. "We've just finished cutting and baling, do you want to do some baling? If they are dry they are only 60 lbs, and it goes quickly."

"No!" I said, with a look of horror, "Honestly, I don't think anyone WANTS to do baling." Geez, I was prepared to help with the dishes or making food, but hours of throwing 60lb hay bales? Was anyone ever THAT much in love? At the science museum they tested hand strength and Linda was at least 30 lbs stronger than mine.

The university program where I went for my masters, there was a woman who wrote about her life with goats. She had a weathered face, said ‘fuck’ a lot. She was cool. Master’s program scared me because I was in the writing program and all the teachers were gay. Gay and OUT. So 70% of the students were gay guys, and the teachers were screwing students, and stumbling by my cabin drunk and naked, except for a neck scarf, going ‘Yohoo, Charlie! Or is it Bradley! Where ARE you?’ in this singsong way that drunk naked gay men seem to do well. Then there were the lesbians, who were all OUT, not out, but out in all capitals. And very serious about it. And the woman I wanted as a mentor only took very OUT lesbians because her book won an award and she wanted to find a writer worthy of her. And at the ending session dance I danced with one girl, who was OUT, and she led. Didn’t ask, just led. I don’t know if the program even accepted femmes’. I was at home, and NOT OUT, when I wasn’t at college. Well, until we went and lived in the Tower and I sold rare book of the occult and other occult objects. That includes the guy who wanted to sell me a Grimoire, which is a old spell book of a witch, or warlock, sometimes centuries old. Only this guy wanted to warn me that the book was bound in human skin. I’d like to say that was the oddest book or object I was offered or sold, but no.

Linda says that I somehow managed to ghost in and out of dodgy flats, old trailers, and other dangerous places and still made enough to eventually rent part of a book store. I was invited to a wiccian mass, and then to a black mass, not a faux black mass but an actual ‘we are here to worship the devil’ mass. I smile, try to explain that I care about the books. They laugh. No one believes that I don’t do drugs, and that I have never done drugs. But I haven’t. And I don’t. EVER.

I read more of the goth witch Serenity Rose and her shy ways. That’s because she is 4’11”. You can’t be over six feet and shy, because everyone is ready to tell you who you are, even if it their fantasy. Or perhaps you can, I’ve been shy most of my life. But there is the face for survival and the real face. That’s what being 20-something is about: who to trust with the 'real' face. Sometimes I think I am always 20-something, and other times I am SO glad I am not 20-something anymore.

Well, I couldn’t be out, not in that master’s program, so I was dismissed, and returning home, to be honest, in a pre-pansexual city of Victoria, surrounded by Churchy folks, I think I had sex, but it was likely worried and shameful sex.

When I went off to uni for my off campus masters, I applied to 15 places, 14 accepted me, 3 offered scholarships and jobs. I reapplied to the one place who didn’t take me. They took me six months later. Not sure now why I wanted to be at the one place they didn't want me.

I didn’t fit in with the others in the Master’s program. I ending up drifting to a group of five or six who didn’t fit either, ‘the outcasts’, and we hung out. One guy had dyslexia so bad, he couldn’t swear correctly, and a guy in a beard who was a good listener and always handed out free cider, plus the guy who ‘still’ hadn’t graduated and a few other ‘undeclared’ because who you were having sex with seemed more important than what you were writing. Then my mentor, and another gay mentor did reading on how great anal sex was. It started this cascade. Everyone, students, teachers and visiting writers were doing readings on how wonderful it was to do this or that, fisting or things with objects I didn’t really understand. As one author said, “Sex is something to do, not write about.”

One of the new students that semester told everyone that he was one of Gore Vidal’s lovers. Everyone was oohing and aahing about this. Meanwhile us, ‘the outcasts’, drank cider and tried to figure how being one of the MANY, MANY people Gore Vidal screwed made you a better writer? Was it some magic sperm that did it? This is when I decided that I was Asexual, and told the guy with the beard. He sort of did a ‘y’up’ and gave me another cider. Okay, I was Asexual, which compared to what was going on around me, I was.

And I wanted to be. I wanted to meet someone who got my mind, then maybe my body. Everyone was having trysts and affairs but the ‘outcasts.’ We couldn’t take another night of the ‘sex odes’ and sat outside drinking cider. My roomie kept telling me to do a reading, “Your writing will blow them away.” Well, I wrote a poem about sex, about my experiences; mostly about how having an hypersensativity to sound, smell and touch combined with 'too much in my head info' isn't good for sex. The roomie fell out of bed laughing while reading it. “Oh GOD, they are going to die when you read this.”

The woman with goats (who I had had renamed Eve, because I told her if there was one woman to start from, it should be her) was reading the same night. Some butch lesbians were trash talking us, saying it would be nothing worth staying for, and how Eve, the goat lady, wanted attention. “Oh princess,” Eve said to the butch, “of course I want attention, don’t you? Or did you enter a writing program so OTHER people could be read, and not you? We are ALL attention whores, to the last one of us.” She had this laugh, low from too much cigs and I thought ‘that was who I wanted to grow up to be.’ She silenced the rabble.

Up at the podium, I could see my roomie at the very back. Not just at the back but up in the loft, leaning against the back wall making these ‘go on’ motions. So I read my poem. It immediately caused about half of the students to hate me. But I also had two offers to have it printed immediately (I had hand written the final draft on a piece of paper) and it stopped the topic of sex DEAD. No one dared read about sexual experiences for the rest of the sessions. My mentor, Kenny, who writes for the New York Times, amongst other publications, had been introducing me to every important book for gay men (which is why if there is a book about gay men in prison, I’ve read it, Henry James, read it, French early gay writings, read it), turned to another teacher between stanza and said, “There is something very seriously disturbed about that individual.” And ended as my mentor. That was the last time I had a mentor. I had to mentor myself.

Linda says that Stephen Fry wrote about not having sex and it made his career, I seem to either have done it wrong or I should have taken the rejection and gone to another master’s program. But now, published on four continents, in various publications, I am one of their most successful grads. But not like Stephen Fry, alas.

Back to three days ago when the two men are sitting opposite me, remember them, like a joke, a psychologist, a psychiatrist and me, a doctorate researcher sits in a room…. One of the guys hold up a picture of a Rhinoceros, and asks, ‘Do you know what that is?” And I am thinking, ‘Is that a black or white? Low or high second horn?” I tell them I think it is the white Rhinoceros, but could be black.

“How do you know….”

The next one is a sub-Saharan camel as Mongolian ones have two humps. I am not deconstructing anything, I am sharing my life honestly. I don’t know how nor want to say: I have a friend who is smart, has an article published in a science journal and has outlived her siblings is who taught me all I know about Rhino’s.

I still have no desire to wear purple glitter today. Alas. Though I can remember teachers saying, “Uh…..fine, just never do THAT again.” I was such an intense little bug. One junior high year I self organized the ‘Math Olympics” on March 15 and went around telling everyone, “Beware the Ides of March, Math is Coming!” The previous year, in the one year they allowed ‘an outsider’ to teach, we had art class. In sixth grade they allowed art class for one year. I spent most of my time making a 3-d object, two feet by two feet, which when asked I said was ‘The alter of those who Worship the Egg’  Yeah, me as a student…..

I kind of scared the teachers. I was just TOO….something. (“Kelli, do any of your friends take medication?”; “Why?”; “I think they might be OFF it!”) I got caught playing softball in Geometry class with an older girl I was crushing on, and they didn’t know what to do, so did nothing. (hey, who brings a softball and glove in the backpack to your geometry class?).

From Serenity Rose: “When I was eleven this teacher tried to wipe off my ‘makeup’ on account of it was ‘causing a disturbance.’ She spent a good 20 minutes scrubbing at my eyelids before had to give up and apologize and tell me not to tell anyone about the whole thing” (I read this and thought, “Wait, I wonder if she has Ehlers-Danlos Syndrome” – causes pale skin).

That's my mental experience with the first 50 pages.  As my first and best creative teacher said at least once a week, "You think too much McClung."

The past that shapes the present, and parents as just people

The problem of an eidetic memory combined with dyslexia is that I can literally remember everything backwards and forwards. And as I am frequently paralyzed, or dealing with bathroom issues that take a few hours, there is plenty of time to review, to believe that with the best of intentions, I made wrong decisions from day one.

I wanted to grow up so badly, because I honestly believed that somehow, someone would help the pain to stop. Being hypersensitive to my body, to sound, to smell, to others’ emotions, and living in a large city of 16 million made me go into the woods, as far as I could get, once I turned 19. I did not eat a meal with my family from the age of 14, because using ‘ear plugs’ was ‘disrespectful.’ It literally hurt that bad. I couldn’t hear in class unless I was in the front or back row; I couldn’t go to movies unless the theatre was empty; and if it hadn’t have been for the inventions of walkman players, I would have been the nut pulled off the bus still trying to yank gum out of some yahoo’s mouth. Touch is like pain, sound is unspeakable, and the scent thing, well someone like me lived in Dublin in 17th century, named Jonathan Swift, and he severed a close relationship after being touched on the arm; his views on smells and sounds are described in detail in Gulliver’s Travel.

With my parents using the word ‘sensitive’ like it was akin to the scarlet letter and still unable to use it without the pause, such as my father would say, “you know we have tried to love you, despite how your…..’sensitive’ aspects took more time and effort.” He would also tell me every day, ‘Remember that you represent me, and my name in everything you do.’ Between people going, “oh, you’re Peter’s little sister’ and the genuine fear we all had of my father, it is a wonder I had any identity of my own. Didn’t being someone’s ‘Little sister’ or ‘you’re related to (insert name)’ the worst; knowing up front that they don’t see you at all, but someone else. And when you have teachers do it….ug.

All the time growing up, discipline was severe, ritualized and laced with humiliation. I don’t think you really know humiliation until you have been ‘disciplined’, on the sidewalk of Seattle, and then threatened to have it start all over again if my ritualized thanking of my father for hitting me, was not tinged with the appropriate amount of love. Any whiff of ‘rebellion’ or lack of appreciation, and it started all over again. When we look at family pictures, my mother will say, ‘Oh I remember that day, you two, it was always something, pouting or being too loud, but back and forth, the whole afternoon, when one of you wasn’t getting spanked the other was.’ In the picture, I am 3, my brother is 5 and we are by a blue plastic wading pool. I become speechless, not because of one view or another on spanking but because watching her children being spanked for ‘incorrect attitudes’ for three to four hour is a good memory to her.

For me, I remember going down and spanking my plushies, over and over and planning how many children I would have so I could hit them and hit them and hit them. I would be 2 and planning this out. This is what children unable to feel safe do. My father’s rules were that everyone got it, regardless who started it or why, and that you didn’t make excuses, even if it wasn’t you, you just took it, or you would get it for making excuses as well as the ‘crime’. At age four, my father had punished me severely for something I didn’t do, didn’t even know what he was talking about. He found out later, and came down with the wooden spoon, told me that he had been wrong and I was to hit him. Regardless of everything else he was my FATHER, the man who I idolized, I yearned for his approval, larger than life, grander and greater than anyone else, he was MY father, and he wanted me to hit him. I cried so hard, I couldn’t hold the wooden spoon. I knew he was going to discipline me for failure but I couldn’t hit him. Maybe other children want to hit their parents, but I didn’t, I wanted to help them be happy, to let them know they were loved.

And it is why I do what I still do, send gifts, send postcards. So that whenever a gift, rare and obscure is used, they will hopefully know that they ARE special, unique and wonderful. Because that is how I see people, and I know how hard it can be, due to various circumstances, to look inside and see any part of that.

For Mother’s day, at age 4, I built a boat, which was a three deck boat out of wood with a chimney. I hammered it myself out of scrap wood, had sawn the shapes. When I gave it to my mother, my father took it and announced the he was going to test it: he put water in the tub, he put in the wooden boat, and it turned upside down, as I had stacked it high cause that looked ‘cool’. He said, “So that’s your gift, a boat that kills everyone on board.” I never did woodwork or hand crafted a gift again. I simply could not take the pain I felt that day, and every day I remembered it.

But that is how he was: When I was 16, and we had a dishwasher, I had to clear the table, rinse the dishes then put them in the dishwasher, and turn it on. My father came by, opened the dishwasher, took out a plate which still had some food stuck to it. “So when we your mother, brother and I die tonight of salmonella, it will be your fault.” This was how things were, I didn’t miss a bit of food, I killed people. I didn’t pull out the vacuum cleaner cord from the wall by pulling the cord instead of the head, I had to help my mother bury her child. And those are the times when I didn’t just disappoint my father, but God the father, creator of the universe, who looked down on me, saw a creation flawed almost beyond redemption, because the placemats weren’t aligned equal distances apart.

So no surprise that not one person who came to visit overnight EVER came again, until I stopped asking, somewhere around 14 or 15. My father told them that ‘under my roof, it is my rules’ and apparently even in the same cult, ‘his rules’ were enough to make sure I never had sleepovers.

That is not to say I did not have fun, but often due to lack of any accommodation to my ‘sensitivities’ or that we were children the kindness, the fear, the terror, and the punishments all roll into one. I think that the second greatest fear I had was that my father would find out that who I was at school was not who I was at home; and the greatest was that he would somehow, like God, see into my mind, and be forever disgusted and aghast.

I did not sneak out after curfew, I did not go to clubs or pubs or bars or parties, even class parties, I was not in trouble with the law, and I had a job, from age 8 for summers and from 12/13 onward full time. Yet, I knew I was ‘bad’, because I was told so. Peter used to say, ‘don’t worry, just tell them what they want’ or ‘they’ll forget, just let it go’ or ‘he won’t find out, why confess?’ He never got how I actually believed all that crap, and I never understood how he could knowingly lie, not just to my parents, my father but to God, and not seem to care.

I love my parents, I love my brother. It is a love that has never stopped, not one moment from when I was able to communicate. My grandparents and parents used to laugh at me because I would be nine and have lots of gifts and notes with love written on them. I couldn’t understand why they laughed, and so I hid and cried.

I learned two things: that power, including the power to hit, whether the face, the body, the hands; or the power to treat a person as a thing, a possession, it is something that is hard to let go of, particularly when someone feels threatened - if that is what they know, they will return.  And second, we all, when things are desperate and all else is failing turn to the model we saw day in and out: we become that  mother we promised we never would be and say those things we vowed would never be said, because they hurt us so badly.   To stop myself, or for anyone to stop themselves take on the worst they ahve seen modelled is day to day, and most needed when things are worst.

My brother knew me best, because he knew that withdrawing love, when I would not give him what he wanted, would use that lever to force me to give him money, or whatever he wanted, when he wanted, when I was a child. As an adult, once I was able to be free of him, he knew that while he could not find me, he could hurt me, by never replying or returning a message, by openly withdrawing love.

That’s not to say I don’t want to see my brother. Or that, if will forgive me, for the hurt I have done him, and wants forgiveness for his hurts, I would welcome the gifts of forgiving each other. So I have asked, many times, offering places we could meet over the last seven years, but he declined.

My parents, who I saw, a flash of several years ago, when they appeared at a Terry Fox mile marker, said nothing, then disappeared again. Google showed me they had bought a condo in Arizona, but I know, and Linda knows that just to spend time with them, a few days, it is something that will not happen. Not before I die.

I think they might feel that ‘I made this bed so I will lie in it’, as if anyone wanted to stop writing, stop fencing, stop running and hiking and working and going on vacations and end up on pain medication and dying instead. But then again, when they moved they got rid of their phone, there is no email for my mother, my father screens his emails and I don’t have an address, and they both closed facebook pages, so I am thinking that they don’t really want a lot of ‘uncontrolled’ communication from anyone.

I can’t believe I idolized my father into my 30’s, and only know that they are gone, accept them both as humans, not superheroes or villains (though the sheer number or illegal things is impressive), but just folks. Maybe stubborn or silly or hurtful folks, but who isn’t in some aspect or another. I try to reflect and change myself for the better each day; limit reactions no matter how much pain I am in, not shout, be open, be honest in all ways.

It is hard, with my father so long as an actual ‘authority’ figure, making decisions on people’s lives like a police chief, I simply don’t know how to respond when he shows or states no remorse or desire to do things different for those years before moving here when he knew of women who were being raped and others beaten regularly, and did nothing. When he says ‘Why should I call the police?’ because no one told him to do so. Yet he was the minister to the people in that province, in a group that didn’t believe in confession, but did see itself held to God’s laws first and man’s laws second. So was the hiding of rape, beatings, incest just protecting the name of the church? Year after year, mothers and daughters beaten and raped, showing up to church bruised. And I was too stupid to get why they were ‘sick’ so often.

And the racism: splitting up blacks who dared to engage with a white, forbidding to marry them, all because God had in his plan, after the ‘sin of Ham’, required black men and women to serve the whites, the true ‘children of God’. And in the same way, a woman was subject and slave of men, and most of all a husband. But any man could order any woman in the group. And he says he was for women’s rights, but my mother didn’t work but 2-3 years for my whole life, and yet neither has ever stopped giving me guilt over not working enough, or hard enough, even after I got ill. Was I supposed to stop working once I got married to a guy? Or, when I went to a ‘worldly’ college, did he accept me as lost. These are questions I am curious; as I think most children want to know from parents: “Do I make you proud, do you want to understand me? What do you think of the choices I have made?” So when I was ‘cautioned’ for having black friends, does he regret that now, or was it ‘just doing his job’ or ‘just following orders’ or ‘I had a different understanding’: so when he said that ‘It is okay to know them, to be polite but not to befriend them.’ Would he see that as racist now?

Then the whole issue of ‘trusting God’ instead of seeing doctors. And the shame involved with those who were not physically ‘pure’ – and I mean, if God loves you, you will have a perfect body. I still don’t think my mother or father have been able to say ‘Anorexia’ yet, though I was and am, and fought it for 13 years, and fight it still, but beat it by seeking medical help instead of just prayers. The depression I had, early on, I made the mistake of asking advice from my father. So I am sitting there, with 1,500 people when my father tell all of them, the church, that my depression was because I did not focus enough on God, but on myself. I was 16 when he gave that Sermon. Those slight disadvantages of the Minister’s daughter: for decades my life was juice for his sermons, yet the double standard on how I am to keep all things quiet and buried on the blog…

So when I see the KKK march, and I think of the teens that my father had kicked out onto the street for having a black girlfriend or boyfriend and not ‘repenting’ – and I look at my own life, I remember every sentence and I am ashamed. I made a racist joke I heard from an adult 10 years older than me to one of my closest friends, who was black. I didn’t get the punch line, but from his face, I could tell he did. And though I apologized, sincerely, it was never the same. And who could blame him. I wanted to impress him and I hurt him deeply, in a way that he could never fully open up to trust me again. I was a junior racist, and my brother, who went to racist university (unaccredited at the time), and learned about the sins of misogynation (the intermixing of the races). And so did we all. And now, when Peter McClung sits with his black co-workers, does it matter that he watched his fellow college students, like all ‘real believers’ to ensure that no black man danced with a white woman at his college. And that while a bunkmate may threaten to kill someone, or as he told me of a fellow who had to have his job changed after being caught having sex with the bovine, those weren’t sins like…..being gay, or dating a catholic, or a Hispanic.

My father told all a list of those who ‘think themselves Christian but are not..’ It was a long list, but Catholic was up there, along with JW, and so those couple thousand in Regina were told, they are NOT like you, and thus will never see the face of God. And I look back at myself in my mid-twenties, and my pride, hearing him say that, knowing that people knew I was his daughter and how he was ‘rightous’ and I feel sick, phsyically ill.

I don’t know if Peter or Murray or Pat feel differently. I was told I was a hairs breath from being expelled for dancing with a black classmate, and only my graduating in a few days was what had saved me. I was unrepentant. But I still had so much racism that had been pounded into me and that I had lived with and around, that I am still trying to root it out of me.

Perhaps it is because I remember so much that my family stay away. Or because I feel that the best way to move on is not to try and bury the bodies deeper, but have the light sun on that, ask for forgiveness, and then do the part I still struggle with, forgiving myself. Every hurt look, every time I said or did something, even as a child, I regret it. I told my aunt to save herself and turn to OUR God, I was 10, she laughed with good humor, but I still regret it. She had left a man who beat her to save her children, and her family; MY family here in Victoria, left her in the woods. When she married and her husband got cancer, they laughed. When my cousin had a learning disability, they told him he could never do anything above menial labour….and made jokes. I love them, I miss them, even though I haven’t seen them for…um…12 years or more? The last time I visited, they tried to get a restraining order against me, and to force me, and get my father to force me to not see my Grandmother. I had come out a couple years before. Me in the UK being out was okay, me actually TOUCHING their mother with these hands…not okay. But I still miss them. Like Linda says, family is family.
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And I would cover for them, warts and all, because family is family. Except that they aren’t, or they have made it clear I am not, and we have been cut off from them, who live a few miles away, by their choice. I wish there was a Thanksgiving dinner. I wish my parents would show up sometime and invite us out to Starbucks. But as I told my mother the last time I saw her, “I want a relationship with you, but however much or little you want of a relationship, I will meet. If that is three days a week or one day every two weeks or emails once a week, whatever. But you make the choice, and let me know.”

And as my father used to say, “The absence of choice IS a choice.” And he was right on that. People have and make choices. After watching me send out emails to try and start a relationship every month or two for a couple years Linda finally said, “Beth, they don’t want one.” But I keep trying, just less often, it hurts less that way.

I worry that I push those in my life to some standard in my head. That the pain of all the previous and ongoing rejection gets mixed and muddled, and that I am not a good friend, or one who is too demanding or not there enough. I don’t want the hurt of being left make me a person that pushes others away. It is hard when the past hurts and the present hurts get all mixed up to know what is reasonable, and how to just ‘let it go’ – but I need to.

So I will keep trying to get out there and join some groups and meet new friends. And give time to the friends I have. As I have, in the two decades, to live life openly and honestly, which ends up having unexpected results (if having your brother sending notice of suing me isn’t unexpected, it was for me). I wish the past and present made more sense than it does right now. And perhaps, once Linda has a job, and we have stability again, and she is walking again, with her leg healed, life will look different. I just really, really hope I am still here and alive to see that.

Beacon Hill Birthday Visit: Peacocks, Squirrels and Bands, oh my!

Linda and Cheryl helped me to Beacon Hill Park on Saturday where it was light overcast to sunny in the late afternoon.

Today, the Monday, is Victoria Day, to Celebrate Queen Victoria, even though she is dead for over 110 years now, and we are celebrating the Jubilee of Queen Elizabeth II (only a distant great aunt, hardly any relation to me). For the Parade, there are bands, and dozens of them come from Canada but mostly the USA, over on the Coho in school buses and other transport to be part of the Victoria Day Celebration. We are a Steam-Punk Town which still celebrates the eternal reign of her highness, Queen Victoria, long may she reign!

The apple and pear blossoms had started to fall making a carpet of flowers around the benches. A small flock of Canada Geese had arrived last week and camped out near the central pond (look down by the second bench to see them on the grass).

The squirrels we saw that day were either small and twitchy, or starving and fearless. Linda, sitting on her walk with her ski boot (no weight bearing), had a squirrel who would take his loot away for hiding.

However he was followed by a crow, who would watch where it dug and then after it returned for another peanut, go and eat the one that was buried. So the squirrel became more and more paranoid, pretending to dig the peanut multiple times, and sometimes disappearing over fields to hide his hoard. Sometimes going up a tree to see all potential enemies.

Cheryl found a young and tiny grey squirrel, a little twitchy.

His habit, like the messy boy gobbling his meal, got more and more exciting while eating a peanut that he literally stretched upward and back, sometimes almost falling off the root he was standing on he had his head so far back. He was ‘pounding down peanut shots.’

It seems she got the Frat Boy of squirrels.

I found a squirrel who would bound towards me, totally fearless. I even ended with a video of him coming all the way in to my hand for a peanut (to be uploaded later today, a still pic for now).

However, she would take the peanut and disappear so far away that after a few minutes I would give up on her returning. But she did. You just needed a book to read while waiting for her.

Meanwhile, three buses pulled up and at least one school emptied out, the students leaving the instruments by the stage while a small ensemble played various Jazz, band and mix pieces. The Double Bass player, like all double Bass players, kept dropping measures, and sometimes came in a beat off.

The bad part of being in such a small group was that your mistakes are evident, though the Bass Player was playing soft often, while the Tenor Sax was cutting it up, making the most out of the solos.

Our squirrels had been ousted by a Peahen and a male Peacock, with his iridescent blue to purple neck and breast and flashing colours putting the flowers to shame.

The problem with Peacocks are two: first they can’t open the peanut themselves so they DEMAND you crack the shell and open the peanut FOR THEM – at least the large male did. And second, with a wicked hooked beak and cobra-like jabbing motion of the neck toward your fingers, it can be a bit intimidating, particularly when you have a irritated peacock less than two feet from your face making the full haunting cry ‘AAAiiiiiiiiiiOWWWWWWWWwwwwww.’ It was telling not, ‘Hurry up please’ but ‘How would you like me to rearrange your face!’ – so moody!

The squirrel did return, and approached, just about to take the peanut from in front of the wheelchair when suddenly it started to retreat. I couldn’t figure it out until I saw the two peacocks, like battleships, strut past my chair so close they bushed the sides, silently telling crows and squirrels alike, “The one with the peanuts, She’s MINE now!”

During this, three teen girls from the band approached taking pictures on cell phones and ipods. As Linda had the bag of peanuts and I had a zip lock bag, I keep under my wheelchair for emergency squirrel feeding (be prepared!), I offered the bag to the girls, or specifically to Alto (she played the Alto Sax). The three girls were in a state of near hyperventilation and all talking at once frenzy usually saved for boy bands.

“Oh you’re so pretty, and you know it, you should be models, yes, you are a model aren’t you, you and your girlfriend.”

They called over their band teacher, who was either gay or a naturally camp Asian man. He coo’d over the peacocks and the squirrels and ran off to get pictures of flowers. I convinced Alto to take the rest of the peanuts and try feeding the squirrels who were across the green by the tree. For them it was exciting and wonderful wildlife. For us, having peacocks, ducks in overabundance, Canada Geese, squirrels eating from your hand, along with robins virtually hopping in your lap and giant Koi Fish in the ponds, all a block or two from downtown is just normal. We are Victoria, and host many different animal panhandlers. Worry not, the peanuts were no salt, and all bought specifically to be fed to squirrels, having checked out the types can cause problems with animals.

We went back to the apartment for our picnic and ended up watching a couple hours of BBC’s documentary on Planet earth, including the Elephants and lions of the Sand Dunes and Deserts as well as lizards like rainbows in South Africa. Linda and Cheryl had been to the farmers market that morning and picked up fresh cheese curds brought down from Parksville, 80-90 miles north of town, as well as a new citrus grapefruit soap to scent the room and freshly made donuts.

I sent out 80-90 postcards the last week or two to invite all to have a picnic or celebrate this week, having some fun to be glad for being alive.

Yes, things are bleak, probably the bleakest I’ve ever been in my life, because while I’ve been homeless (though working full time – money going to tuition), I’ve always had a sleeping bag, and my health. Without the choices of a stable condition, I am physically and emotionally helpless, but the same damage to my brain which makes a song that sounds good to me make me listen to it for 145 minutes until I pass out, or unable to stop the thoughts of worry in my mind, like racing gerbils, it also allows me to appreciate everything good in life. So whether it is a hug, a fun conversation, to reading postcards, or just thinking about each person, how I have oxygen now due to D., or re-reading a manga gift from a year or two ago, and seeing the name on a post-it note on the cover, and I shiver with happiness, or find a tear of joy on my cheek. I enjoy a sunset, or the Super-moon which rose over Victoria the last time I was able to get out, 10 days ago, rising over the Empress Hotel (Photo Credit: Weather Network)

Have a great week, I hope you take time to enjoy life, as having had three ‘almost’ dying in the last four weeks, including one that lasted a week, I have hope in each day. I’d like to see the last Batman movie, but don’t know if I will live that long (July 15-30th). I have no advance manga orders for Aug or Sept because neither I or Linda can see that future from here. We’d love to be surprised. And to send out almost 100 postcards.…that was a surprise weekend. And we edge at almost 6,500 postcards

If you are in Europe, I notice that this week is Eurovision with next weekend being the wonderfully camp singing competition that brought you Abba 30 years ago, as there is over 50 years of Eurovision. Here is the 25 finalists in under seven minutes in HD from 2011 if you don’t know about Eurovision. I like Finland, Hungary and Moldovia for just ‘out there’. A gay favorite, with people watching in large screen in most gay pubs in the UK and Ireland, I miss hearing the semi-closeted church music directors eyes light up at the word ‘Eurovision’ – the year we left, 2007, was when the lesbian heart song edged out the drag queen singer to win – that could only occur in Eurovision (LGBTQI performers are common).

‘Complex’: the Bane of dehumanized Bureaucracies (and my Birthday)

Linda and I have told ourselves, ‘well, we’ve hit bottom’ only to have, at least once a week, news that something we hadn’t even considered is being taken away. It is like living in a house on stilts, and after weather, rot and government agencies knock the stilts down, so we are merely floating in muck; we get mailed a fine for removing the stilts along with an ‘muck disruption’ surcharge.

‘Dying ain’t for wimps’ – a quote that made Linda give a short, bitter laugh, “That’s the truth.” We just don’t understand why the pragmatic obsession for the easy pigeon hole is the noise which fills people’s head. The quote is from the short article by Kath Murray’s ‘Three Things Every Nurse Needs to Know to Provide Excellent Care for the Dying’ the advice of ‘Stop (empty yourself of ‘YOU’ and see ‘them’), look and listen’

The view from my housebound internet window of how other people engage or spend time is brash, always busy and a bit bizzare.  There is always the 'click here', visual and magazine/TV/'minute news' mismash of entertainment/news that isn’t news/passions and treads which is the ‘stuff’ that OTHERS, other people seem to fill lives with. Does what a late night talk show person said matter?  It does to millions of people (I'm told), along with what this or that politician's spouse/offspring/sibling/sex toy has to say?  Does a star getting mad matter? Does what President Obama said about gays matter? No, because DOMA stops Linda getting a green card. And a green card could be a job in Seattle.  So do I have the energy to care about American Idol or Dancing with the Stars? No. Have I EVER had energy to see just one episode? No.

You (the RN) might hear, “It’s not being dead, it is the dying I fear”. You might receive questions about timelines, “How long do I have?” Or preferences, “I don’t want to die in pain.” Or limits, “I have had enough. I am tired. No more tests. I want to die.”

I cannot read from Kath Murray aloud without the quiver of tears affecting my voice, or the slow exhale from Linda. This is where we have been for months. Living isn’t hard; it is like when Shackleton used a carpenter’s plane for three days and nights to cut steps to climb over an iceberg in order to survive. Impossible, yes, but then so is everything that if oft done to survive.  Like Shackleton, sometimes it seems I won't, and will fall, and that's out of my control; yet it sometimes manages to keep going, this body (also out of my control when that low).  And sometimes I seem to progress, but that is what I do, all I do, every day now: survive. And when I have time to look up, or an hour out of a week of staying alive, I write and send postcards.

Yesterday Linda called Shaw Cable to tell them that the new phone/internet/cable bundle meant that we didn’t want to pay for TV cable, having had six months free.  Because, in the last six months Linda estimated watching less than six hours. The Shaw rep told her that she still had it free until December. ‘Oh well, Olympics are coming’ she said to me, and I shrugged in agreement.   Maybe we will see an hour of the Olympics, or two.  It feels like we are padlocked inside darkness, only able to glimpse what others call 'living'. 

With no job, dozens to hundreds of applications already out and rejected and getting around by putting her knee on a walker and scooting with her unbroken leg, after taping down all cords, Linda has more to worry about than TV. As for me, I finally was able to do the sit ups and push ups which the specialist recommended I do in order to push back the edema enough to skim on the edge of keeping me alive. After that, I had the energy for the next two days only to sit, to quiver, to shake from hundred of thousands of erratics and muscle spasms, and breathe.  Then for two more days, exhaustion. That is it.

From Kath:

“if we have stopped, looked and listened, we are invited to cross the street with the dying. We journey with them for a ways. We provide a safe place, a sacred place… When we listen, our role becomes that of advocate to communicate and ensures patients preferences and desires are met."

Linda and I know nothing of ‘a safe place’ – Shawn Tan of the highly recommended book, The Arrival, wrote The Red Tree, a short visual story about alienation, displacement, and the emotional landscape of depression and hopeless. “It was written for today” said Linda, reading it this afternoon.

But my birthday week was coming. I looked forward to when I would smile again. The knowledge of being alone, staring at my ceiling in the night, would recede for a day, or a week – May 19th-26th.  Birthday: Celebrate!

I was woken instead this afternoon by the VIHA care manager and my GP/Victoria Palliative GP on Linda's bed.  They tried to rouse me, verbally prodding me, questioned if my eyes were open enough, if I was 'aware.'  Once decided, they informed me they visited me to officially tell me that I was not dead. And in not dying by today, I had failed.  I was to be punished.  My care options were removed, care and caregiving for Linda removed and our financial burden doubled by the GP/Vic announcing he was acting to take me out of the plan which pays for meds.  For this, they visit.  Then leave.

It doesn't even hit me until hours later that this is the first time my GP has seen me 'normal' (as the few times I am well enough to visit him are the 'up' hours used for that month), or touched me in evaluation, or taken decisive action on my behalf.  He acts the zealous anti-advocate.

Linda was irked that while the GP promised home visits, he never comes, or even responds to desperate phone calls.  His one response arrived weeks after a week where I was fevered and my kidneys failing, I go a week into renal failure.  He decided he would only come when I am unconscious and Linda is not home.  I think Linda, polite as always, declined, then hopped back to her work desk.

We are both hurt and confused because we trusted them, and the system, and were honest, up front and obedient: if the specialist said 'do this' we did it, when the web page or handbook said 'ask X for assistance', we did.   We have asked and advocated for transparency and compassionate care.  We asked for appropriate edema medication only after it was noted by the GP doctor and waited several appointments before asking for medication for symptom management; the same with pain medication. And yet, while we were offering on paper and online everything from massage, counseling, volunteers, people to simply visit, to assistance in washing, in dressing, in transfers, in educating us on likely problems, no one ever acted, ever came, ever even pretended to care. Even during crisis, when we called the Emergency Response Team from Victoria, BC Palliative Hospice to aid Linda instead of going to hospital (as we were instructed to do), no one came.  So I was left lying in my hospital bed at home for days, overheated, fevered, unresponsive with the body shutting down.  And Linda alone to worry and wait.  Why treat us this way?

We couldn’t understand why?

But we accepted it and moved on, trying to find a new equilibrium, accepting that they were only allowing a partial assistance for meds. And now, that is taken away. Why?

Why?

Because Elizabeth is still alive, we are told.  And I was supposed to die after six months, maybe seven. 

We were ‘informed’ that our GP who is part of Victoria Hospice palliative team is removing me from the palliative program (though we never were able to access it, reasons yet unknown but regardless to any BC resident the BC government pays for most medicines if the patient is end stage terminal, needing to get 50% or below – the tests showed this; the standard used by the Victoria Hospice on ‘palliative’ I am between 20% and 30%, dipping into the 10% of unresponsive light coma).  By removing me anyway this financial burden has been added, not because the tests show improvement, nor that they demonstrate I am going to live longer than six month but solely because the doctor estimated I WAS going to die by now….and I haven’t.....yet. Therefore, we were informed, I am ‘complex’ (in the same tone people used to talk of ‘gays’, 'pride parades' or ‘mixed race’ or like relatives say ‘you know….those people’).

“I am not engaging in silliness” the doctor said, speaking over us as we attempted to clarify what he said, like: had he consulted with that name, address and number of Canada’s specialist on autonomic diseases? He plowed through us, almost physically pushing Linda’s broken leg aside with force to get away after saying, “I thought it would be six months but Elizabeth isn’t dead. So I took her out of the Victoria palliative program. And out of the BC palliative program.” He stopped to complain again how Linda’s need to use ice packs to rouse me to consciousness had made him late.

The journey with the dying is a sacred one. It has been for tens of thousands of years. Along with birth, coming of age, joining, it is the step into that great unknowing. Can that be crammed into the doctor’s eight minutes per patient, or the manager’s ‘alloted uniformity of care?’  Kath again,

“We need to stop. Put our agenda on hold. Get our issues out of the way. Quit worrying about the multitude of other things going on. Take a deep breath. Imagine clearing your brain of all the business and fussing.”

 In the rushing, pushing me awake, ‘just to say what I have to say’, there is no listening, only the flexing of ego. The GP disrespected his profession, his loved ones (those who have and will make that journey), and himself.

And in those few minutes, our lives suddenly got bitter hard. Hopeless. Our light barely flickering in a deaf world of constructed machinations.

From VictoriaHospice.org:

"Who can receive care from Victoria Hospice?  People in Greater Victoria facing advanced stages of any progressive illness may register for Victoria Hospice care, provided that patients, family members and physicians all understand and agree that the focus of care should now be on comfort instead of cure. Typically, patients have a prognosis of 6-12 months. They can register with Victoria Hospice even before any of our services are actually required."

Linda yesterday found my grandmother’s passport. It was a birthday present of the taste of gooseberry pie mixed with salads topped by edible nasturtium flower blossoms: memories of sunday dinners.  Linda found it in the pink chair I dragged and pulled while lying on the floor in a fever, preparing for her return from the hospital.  Linda needed a 'safe place', somewhere to work, eat, put drinks down, I even wheeled to find romances at the library.  The Pink chair, extended, her leg up and resting showed Linda my grandmothers' passport: it had fallen not just under the cushion but down the crease and into the lining and stiches.  The passport lost when she and my grandfather moved into a care facility.  We have the chiar because my parents had already tried to sell it everywhere in town and had to get rid of it, and we were cheaper than the oversize garbage disposal fee. 

Each page a mystery and adventure: The Port of Sydney, Malaysia (been there!), Oman, Singapore (been there!), Philippines, Mumbai, Hong Kong just before it returned to China (been there!), and pages and pages of more stamps. The cruises, dreams and living of my grandmother passed to me through what my mother devalued to be thrown away.

I can relate to ‘devalued’ and ‘thrown away’

Dying was never meant to have timetables. Victoria Palliative Society, started as a cancer hospice, stated it became opened to “all” over 20 years ago, yet:

“70% of our registered patients have cancer. Other diagnoses include ALS, circulatory, neurological, respiratory and other chronic and progressive diseases.”

Cancer patients, ALS patients keep sane by realizing that while a stage four diagnosis or ‘five months to live’ doesn’t mean it HAS TO BE five months, it is also good to live each day, as best as you can. It used to be that once you were in the hospice society, you were registered for six years. That was changed last month to limit it to a year..or so. Still, for those who are alive after six months or nine, and yet still medically present as decling or show to be ‘a few months’ from dying, why are they not readmitted? Why were there not holter heart tests, blood tests for organ function done before this decision?  Why simply state that by being alive they are 'complex', discard them and walk away?  Or has this society determined, like forcing caesarians on women who are a day or week after expected delivery date, to demand force on this last aspect of life? Force or neglect the threat for those who still wish another day, and another. Is the ‘focus on care instead of cure’ mean that one must rush into death? To stop transfusions? Or taking insulin?


Is not life, however reduced from the daily hustle bustle, precious? Are those in that medical waiting place, listening as the body winds down, the song of the music box getting slower and slower not to be protected as the vulnerable individuals they remain? When a GP, a doctor aiding care of those palliative in that city, acts in a way which even APPEARS to act as bully or be punitive to someone in late stage degenerative disease, they represent the collective voice of the Province. Stating as leaving, ‘If you don’t like it, then find another GP’ gives that appearance. If he is the opposite of compassion, or an advocate, then who is there to advocate for the ‘complex?’ Or am I, to a cancer doctor, in a program built for end of life individuals with cancer, not the ‘right’ type of people? Are cancer patients who are still alive months later turfed as well?


I had assumed that neither were, it seemed the humane and compassionate model that the society was to be based on. And if we don’t ask these questions, who will? Who would want to make survival for the dying or those helping them more difficult? Is it not sensible, when finding those in authority who do make it more difficult, to find out WHY?

When my grandmother was alive the last thing she gave me her collection of postcards. It included the postcards that her father had sent her mother, as he traveled as a salesman. Four generation of sending postcards. Or three generations, as I do not have a number, an email address, a location address or a phone number for my mother, and that is how she prefers it.

The medico’s punish me because my birthday approaches and I haven’t died.

My birthday is here, and I haven’t died. For my grandmother, for me, for everyone out there who knows of isolation, of the times when noone understands, of troubles overwhelming, I will write. And post.

Life is precious, and so are people: share living with me. Celebrate. I’ll send a few postcards.

Panty of the Day: Naughty Librarian

While I still will do research, literature reviews, graphic novel and DVD reviews as well as disability, LGBTQI and other minority issues, I still want to be a ‘journalist of complete truth.’

Yes, a ‘tell all’, starting with my ass

(A 'fine' ass, by the by, Linda says it is ‘tight’ from all the exercise).

I believe it is called ‘Pandering.’ Or ‘the lowest common denominator.’ But yes, I am wearing my Victoria Secret ‘message’ panties, literary set. I started with the dream of creating my own library, as a child, and now I commit lewd acts outside one.

Last week, during our last library trip, I was in the entrance atrium trying to explain something to Linda (the topic eludes me) which resulted in my hoisting up my top. After a few seconds of Linda’s glare, I realized her laser beam eyes were not ‘fine I get it!’ glare but the ‘What the ‘bleep’ are you doing?’ glare. Huh? Had the bottoms slipped down and I was showing my panties? I looked down. Oh, hello Girls. I suddenly realized that my haste in changing to leave meant a new top, but no bra under it.

“Right, right, no bra….” I said, with top still hoisted.

“YeaH!” Linda muttered.

I had forgotten my point, but lowered the top, sure that I had made it: visual aids are oft important.

As Linda said, “Well at least the homeless guy, the guy playing the guitar and security guard all got a good look.” Ah, since we had just left, perhaps it was my pert nipple state which had the security guard and some other guys asking if I needed help.  I just assumed the city had become friendlier.

As you can see, I have both a strong affinity with libraries…and lewd acts in public spaces.

Despair wrapped in dreams (The Passager game: with prizes!)

As Treme says, ‘where would we go? And who would want us?’ . Season two of Treme by David Simon who wrote ‘The Wire’ focuses on ‘getting by’(and who writes that he knows it will do badly whenever it is shown, as he lives for DVD’s and downloads: “people didn’t find the Wire until 2 years after we finished broadcasting’). Often it is the hardest times that can help us find what is important in life, and what we want to hold onto.

But like those who sit in the ashes of their lives trying to keep it together for year after year, we are so, so weary of being afraid.

The problem is that while jobs are advertised, and Linda applies, then gets a day long ‘task’ to determine who goes from the Long List to the Short list. Short list has another task, this one takes up to a week, and determines if you get on the interview. Linda has had several of these to end up in the position of ‘if the person in our department doesn’t take it, you’re a good back up.’ But people aren’t like something you can stick in a freezer, and they will be there, ready to work for you months or years later (you can stick people in freezers, it is just very illegal, even if they are dead).

So a sudden job interview rises hopes only to find that they want a top level administrator for near minimum wage (about 60% of what a Beacon care worker makes) without any benefits. So if they offer the job, does Linda work at a job only a retiree or someone at home could afford, or get unemployment? Bad news disguised as good.

Sunday we went to Beacon Hill Park. We go each week; the previous week when we saw the Blue Heron fly before nesting in the trees.

This week we were looking for the rise of the ‘giant’ moon, but got the angle wrong somehow, but it gave me time to take some pictures and enjoy the sunset.

No matters what happens, we live in one of the most beautiful places I know. The town may keep destroying its own heritage, and killing the green walkways which allowed the owls, raccoons, cougars (There were five cougars in Victoria this January; click here for news report and footage), deer and other wildlife to roam, but beauty still shines.

As we set out to drive to the park, a Sandhill Crane, with wings looking larger than the bald eagle, flew right over the van, heading out to Cook Street Village.

It had a orange underbelly, showing that it was a juvenile youngster. While we were atop Beacon Hill in the Van, I saw the crane cross, wings beating and soar into James Bay.

Corinthians says that Love is greater than Hope and Faith, but right now, we could both use a lot of Hope and that belief in the unseen that things will turn out okay, that there will be work which can cover our rent, food and medicine plus can give Linda job satisfaction.

As for me, I’d like to be able to go back to the Y to exercise, but also, to not be so ill that I can’t blog regularly. But I am ill. And I accept that, though it wears on me.

Here is a song, the Passenger, which sums up where both Linda and I are right now, but also, a) watch the video and b) play the game of naming the films: I got about 40 and Linda got 28 – but then we used to watch old Cary Grant, Monroe, Hepburn and other classic films when I had the rare DVD store.

IF you honestly write down your score with your comments and we get 10 people to play, I will send a DVD to the highest and the lowest score (as the lowest needs to watch more films and the highest likely watches lots of films). So, two possible prizes, tell a friend to get the 10 people to play the game! And I hope you see a good sunset yourself (that was a hint for the first film shown: “I’m ready for my close up…”).

Linda unemployed, oxygen kaput, yikes!

Linda had been promised work; as this position she has was ending, and after dozens of applications, several short lists, long lists, she would make it to the final two even, but nothing came through.  Yesterday she was told that a) the funding for the job they wanted her to do didn't come through and b) the head of the organization decided she couldn't apply for the job for the summer and fall, but ONLY if there were no other applicants who were qualified.  So yesterday, we found out the job that barely and not quite makes the rent, food and medicine will be over in three weeks.


It really has been weeks of daily bad news.  She went to work today, pushing her body, because the power wheelchair was coming.  Only it wasn't.  Like the scooter before it, they are seeing if it can hold a charge and MAYBE it will be there tomorrow (or they will say it can't hold a charge and after three weeks we are back to square 1, or will say, 'there is something else we need to check' and we will wait until monday). 


I have wanted to write about other things but trying to make sure Linda is okay, and taking care of myself....it is rather exhausting, like 'I can only sit up and my fingers are purple' as I was yesterday (today the replacement power supply for the oxygen concentrator died).  I have found it and added it to the wish list, but will try to find out if there it can be returned as it has only been a few months of use. 


What is hard is the overwhelming sense of helplessness mixed with so much guilt.  I don't know why things have been so hard for the last two years, and I don't know why they are getting harder.  This is when I normally would be working three jobs or doing ebay selling full time or coming up with some solution.  But right now, trying to rest enough so that I slow down renal failure, or nurse along weak kidneys is all I can do.  I can do maybe 2 hours of activity every 2 days, and that is about it.  And what rings in my ears in my mind is 'why do you fight so hard when you know that your existance is making Linda's life so extremely hard'?   We have moved often and started from scratch before, but never with medical expenses, and one of us ill. 


It is so much easier to be the giver than the person who recieves.  I still wish to send out 50 postcards a week, and 10 gift boxes a week, and if I can do 15% of that weekly, I am doing well.  But giving is something that, yes, gives me peace, while being helpless, dependant and living in a situation where there is almost no hope.....that is not a place of peace.  I still try to find joy, like the pink and purple sunset I saw as I wheeled up and over the hill to return the library DVD's and books, as Linda can't go much farther than the elevator downstairs.   Coming home, the moon was bright and I asked Linda to come out and I wheeled her for several streets, looking at the carpet of fallen cherry blossoms, the large moon in the sky and what stars could be seen.  I used the wheelchair as a walker, and Linda hung on for the ride, as she is often very tired by the end of the day and in pain.  It was a good hour.


But not knowing how to pay the rent, the food, all of it hangs over me.  And I know, in my gut, that I have done something, or I am something which caused this.  I know it because of the family who moved away, and I am glad my parents are snowbirds, and found a good condo in Arizonia as well as up in Canada and that makes them happy, I think (I don't know, as they haven't chosen to email or talk to me, I found out about the condo by accident, doing one of those random google searches).    Why they have chosen a life without me, I don't know, as they never said, they just went.  I don't know why the relations between my brother's family and I, which sort of tensed up after some comments about going to hell (for staying together), but maybe it was me, alone, afraid and tired of holding in so many secrets for people who I couldn't find caring: not blood relatives.  Other people came in and then out of my life, and I don't know why either, perhaps a change of politics, or because I can't afford to travel, or because I am often very, very ill, though working hard on getting as fit as I can.  True friends remain but I feel the guilt that I am hurting them and making their life harder just by staying alive.  Though I have tried, or been tired enough to stop fighting a time or two, only to find that it is a painful, oh so painful way to die, and long in that pain.


So I tried to do book reviews or other things until, living with these walls, I realize that these walls can be taken away, and might be, and how terrifying that is.  I have no reason yet for why VIHA has withdrawn services, and I go out alone, unsupported because Linda asked for help, and in doing so, my manager felt that while I am tasked to have a worker walk to the park with me, to have them walk to the library with me, or help me go to the store, or to the Y, to watch me do sit up's and push ups - well, that isn't how they envisioned someone in my state of health, and thus, removed help.  So in asking for help, we have less help and things are harder.  And I feel guilty.  Even though I find that workers go out with other clients, even to do groceries, or they assist clients in stretching and such in the home, or the Y runs exercise programs for people AFTER they have had heart attacks, and those AFTER they have cancer, or while they have cancer, but I, listening to music and resting, doing sit ups on a mat, now have to have meeting and likely more restrictions.   I don't know what I can do, or be, to change into a person that helps Linda to have a job, or help having a family that is there, or an extended family that helps in taking Linda to the hospital for her X-rays......because people just...go. 


I got a comment about going to sakura-con, someone telling me 'Screw you, you furry fag, why do you join OUR anime conventions' - which I guess is a play off of Screw Bronze.  It is the kind of hate mail I end up getting every day or two, on one subject or another.   Worse are the ones which help me see that getting IVIG might give me a life where I could get a teaching job or another job. 


But, hanging on, I guess like a lot of people.  When they say that unemployment is so low in Victoria, or the recession is over, it just sucks.  I want things like 'dental for Linda' or 'blue cross insurance for a new power adapter', but right now, 'rent' trumps that.  I just wish there was a day or two where something Didn't go wrong.


Here is Lonely day, which is how it feels at times, and I am sure most have felt it; it doesn't make the good moments stop happening, but it is a fight inside, all the time.

Living day to day, and a del Toro film recommendation

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

This is when someone is supposed to hum, 'don't worry be happy'