Saturday, October 30, 2010

Have a fun Trans-eve!: Halloween's invitation to be transgender in cross play, gender bending, cross dressing and more

Welcome to the night and weekend where trans is IN, trans-eve, or Halloween,the time when gender bending doesn’t get you beaten up but picked up or winning awards. It is the night for feminine loving men to go Rococo!
Trans, the T in LGBTQI, is short for transgender and covers an umbrella from the effeminate and feminine male, and Drag Queens, like the ones who rioted at Stonewall, getting gay, lesbians, bisexual AND T rights out in the open. But also includes the largest group which are heterosexual males who like to cross dress, as well as variance in gender roles, gender play, gender identity and gender perception preference. Presentation, or gender identity has nothing to do with sexual orientation, which is often misunderstood, as many famous female early cross dressers were as heterosexual as the majority of men (most married), like Dr. Mary Edward’s Walker (who won the Congressional Medal of Honor as a Doctor in the Civil War, 1868) to Katherine Helpburn (the heartthrob of so many baby-dykes)and now, the Butch Clothing Company has launched this year, selling to women who want to wear men’s clothes. Gender presentation, or even identity has nothing to do with orientation (gender is how you see or want others to see you: male, female, or a mix, while orientation is who you are attracted to sexually).

Transgender acts as an umbrella term for those whose gender identity or gender presentation for periods of time or completely do not mesh with the assigned birth gender. It has later evolved to include those who do not conform to gender norms. The term was created by Charles Prince who created Tri-ess, a group for cross-dressers as different than the medical term ‘transsexual’ (those whose assigned birth gender or body does not match their gender identity and take steps so that the two match, which can include medical such as hormone treatment). Charles Prince created the term because cross dressers and drag queens were being mistaken for (medical term) transsexuals and said, I “know the difference between sex and gender and have simply elected to change the latter and not the former” (changing the gender not the sex – it is if you ask a Drag Queen backstage if they are male or female, they will say male, even if they spend 75% of their time dressed and perceived as female). The umbrella though includes those who identify as trans, which ranges from cross dressers, genderqueer, Drag queen and kings, boi’s, transvestites, those who live cross gender and androgynous (and, of course, transsexuals, and those whose gender identity is not aligned to their birth assigned gender)

For Halloween, this is in North America, almost a ‘free zone’ for gender variation expression and behavior, particularly cross play and genderplay, where through clothing, appearance and/or behavior you are not your identified (for example, your birth) gender. For example, when we went to Japan we went to a ‘Butler Café’ where the Butlers were actually women doing gender play. But as two lesbians, we saw ‘Butch’ and so didn’t understand how in a society where even the food is gender designated (dark chocolate pocky is ‘mens’ while sweet and strawberry is ‘female’ – men drink: coffee, while women drink: milk tea), that this was a living stage of gender play. So the goth lolita’s, ultra femme, come into this café (which is female patrons only), where they are greeted, fawned over and have some male patronizing over what they have bought or are wearing, and how pretty they are by the gender playing Butlers. The Bulters, though biologically female, when on the job and website are socially male, and talk as men (while for us, we were thinking, ‘Butch women’ and missed the fun entirely). Thus the café is all hands covering the mouth and shy flirtation to the favorite Butler who develops a flirtatious fantasy gender play with a frequent patron.

Halloween offers a lot of fun opportunities this time and type of play, as regular restrictions don’t apply, and if all the girls want to wear those white wedding dresses, then a few of the boys might want to be ‘brides’ for a night as well. Of course, if you are going to pick up your girlfriend and plan on doing some gender play, and maybe later some gender play roleplay it is best to let her know BEFORE you show up in the tuxedo.
There is also, ironic gender play, where one dresses very BADLY as a sailor scout for example. However, I can say that since you have the chance of fantasy and gender play, might as well go for ‘HOT!’ and girls in traditional male uniforms tend to be pretty hot. A warning: if you are just trying this out first time you can pick the wrong outfit BIG TIME, this is what females learn between 13 and 15, that though you LOVE as an outfit and it looks amazing: it might not look amazing on YOU. This is why you have those pictures of you in outfits that just aren’t your body shape. Avoid that and take a friend who has some fashion sense and say, "No, it's great, but it's not YOU"!

The other advantage of Halloween is that it is accepting, and femme boys can be femmes, and butch women can be gender boi’s. Linda is what we call a ‘lapsed femme’ in that she isn’t exactly ‘butch’ but rather just a REALLY lazy femme who gave up on jewelry (“too much hassle”), never learned make-up (“Why do I always have to wait while you put that…..STUFF on?”), and ends up buying what is comfortable even if it is in the men’s section (hint: if in a discount shoe store, your size is out and you rush to the men’s shoes to see how they look, you might be heading into ‘lapsed femme territory). Ironically she went as a ‘Butch’ one year and was told she was unconvincing, while as a ‘lapsed femme’ she is often assumed to be Butch. But as Linda would say, “So…it’s comfortable.” (yeah, and some of us are more comfortable femme, as I often have ‘I will dress, wear earrings and blow dry my hair into a style even if I don’t go out’ one of the standards of self will and self pride within a chronic illness). I'm not sure 'lapsed femme' counts as transgender, but it sure is easy to make a costume: Linda, "I'll wear this guy's sweatshirt and my dockers"

Me: "What is your costume exactly?"

Linda: "Relaxed."

For those who want to give cross dressing, gender bending or genderplay a try this year, usually it is males wanting to dress as females so beyond the ‘shave, shave, shave – like legs! PLEASE!’, I recommend using this Kay Cosmetics guide to going from a 2 day beard to a stunning beauty: highly recommended as the directions are accompanied by 12 pictures showing the exact change from Rob to Allison. Or if you want to try female impersonation/drag, use some of ehow’s tips. Or you will end up with this kind of difference (cute guy makes cute girl in gown with bunny ears while school girl is out of proportion, no wig, no make up, and well, skary).We have all seen scary cross dressing on Halloween, and why? Because guys don’t want to admit a little gender play can be fun? Newsbreak: the secret is out, okay? 20-30% of men acknowledge they cross dressing regularly for pleasure (singer G-Dragon announced he does – read the comments, which are very interesting), and only 45% have said they have never done it (women 20% for pleasure or other reasons, but then, as pointed out, gender bending for women is a lot more blurry). So put the embarrassment on hold for a night and if you are going out girl, go for it!

I mean, sometimes it is all about the attitude. Like her, it is sort of obvious about the woman but wow, got the male body set, use of space and sexy man vibe going on. But for those who want a bit more clothes on, ehow has a basic guide for gals who want to be guys for the night (think boxers, pressed breasts). And sometimes it is about the body and gait. How you walk tells the world your gender (men tend to take up more room and don’t move aside while women take up less room and move aside for males). In walking your hips, biology (the ‘package’) and social influences mix, so if you are cross dressing as female and guys are bumping into you, it means they ‘read’ you as female – same with how far the arms are from the body. For a fun minute or two, click here at the Biomotion lab, where you can see the difference clearly in how the two genders walk and also how weight and size change your gait (it has arms, hips, knees feet and head – really fun to move the slider and see the changes we recognize on the street). Click on ‘lines’ if you want to see as a stick figure. For women, the arms don’t go full extension, and for guys they do, the same with smiles (smaller for female, full on for guys). This is why a girl who loves horror films, team sports, belches and can keep up at a ‘chug a lug’ beer contest is known as both ‘dream girl’ and ‘one of the guys.’ But then, you can always go as a GOTH girl, which lets you love horror films, sports, plus you get to carry a plushie as well as things like knives or small chainsaws (a Hello Kitty or Emily the Strange Chainsaw is best)

However it goes, have a great Trans-eve, Halloween and maybe, if you want, you can send me pictures (I wanna see!). Be creative, because even if you always wanted to win a beauty pageant (though you are a guy, and this is your night to be Miss Billings, Montana). But your fashion friend says fru-fru dresses and speeches about wanting world peace aren’t for you, despair not, I bet you could still be a Zombie Beauty Queen!
Have Fun, as this short video (2.5 minutes), The Sweetest Thing, to celebrate love, life and being who you are is about. Takumi, the younger brother of Mai (the heroine of Mai Hime anime) has a bad heart and needs a risky operation but isn’t interested in burdening his sister. He’s a feminine guy who likes his pink apron and cooking dinners, cakes and packing cute lunches. Akira is his roommate and has a few secrets, the first is that he is a Ninja (one who saves Takumi, and Takumi is gushing about this ‘cool ninja’ to his roommate). The other secret Akira has is that he is a transmale which has caused him to hope for love but not expect it. When his secret is found out, he flips, and realizes that all this time, getting to know Takumi (who makes him cute lunches) he has fallen in love. In Japan, the ending of the name (-chan for females and –kun for boys) lets you know how individuals are seen by each other. For Takumi, it is always Akira-kun (boy), for whom he decides to go ahead with the surgery, ‘because you gave me a reason to live’. These are teens having stutters, the anxiety, and the excitement of just being around each other of a first relationship.

Thursday, October 28, 2010

Aren't you proud?

I was asked today if I was ‘proud’ of what I do, the boxing, the outside wheeling?

“No.” I told them, “I’m not proud at all. How can I be proud of what others find distasteful, my continued existance?”

We are, disabled and Able Bodied, all types of bigots, and one of the most supported forms of bigotry is how we encourage each other to give in to our fear of illness, and altered human function and form. Drool, and averting the eyes is 'doing you a favor' - haha. Yes, because having everyone glace, look away and then talk about you, because your being alive makes them uncomfortable is helping me? No, helping them. It is no different than spotting who the odd one is in grade school, and somehow, they end up with no friends. They are stared at. They are, as you will well know if you were one, asked, "Why do you keep coming?", and the idea of invitation to a party, or even having anyone show up at one you host is laughable.

If your disease requires care, then no one will make conversation. I go outside, I go to the video store and it used to be that I had a lot of conversations, now no one wants to talk to me, because I talk slow and funny. Because look odd, bloated in strange places. Nothing that a devo would want to fantasize over. A friend saw a relative who had MS, and the person with MS had type 4, which is no remission, quick degeneration and in two years they were in a home with full time care, in their early 30's. No one at the gathering talked to them except immediate family. And probably the people who didn't felt good for NOT talking, rationalizing it as 'drawing attention' or 'making them feel bad'. Ah, because it is far better to KNOW you are the monster in the corner?

By the time we are adults we learn to stop being bigots in regards to race, or age, and many other human varieties. If a person avoids ever talking to a black person, it gets noticed, and they are a bigot. If a person won't work as an equal with a female, they are a bigot and it gets noticed. If they make comments about 'being with...own kind', they are a bigot and get noticed....unless they are talking about the visually openly degeneratively ill. Two years ago, the very friends who now nod and turn away from the person with MS being fed, cheered them on, invited them to dinner, made them part of their lives.

Is the person inside different? No. We learn that though we are racist, we struggle AGAINST it, in opening up conversation, in recognizing the person as equal. Why? Because as we watch and judge others, so society watches us. And right now, society does not WANT to see an openly and visibly degeneratively ill person as 'equal'.

Yet, is there a single extended family where a person will not have dementia, or incontinence, or problems eating, false teeth, a limitation of food, care from family and eventually care in a home? Not really. I am your future, for some, your near future, and that is horrific to you. I see it when people walk away if they can't understand my speech, or stop talking to me and just stare when I have problems talking, or how, the best way to clear a 100 foot circle is to have a seizure. Because any of this is rare? No, it is just socially sanctioned bigotry. And that attitude not only extends to the chronically ill and invisibly disabled but more so, the 'no no no, they are not one of US.' "No no, people with MS don't DIE in three or four years, that's NOT MS, you have to understand...."

Having a disease is in one way a single event and in another way, two events: the part where you pass enough, whether that is though use of devices like wheelchairs, to be socially acceptable in speech and ambitions. People who wheel the length of the State they live in for charity are 'inspirational', people who have their lungs suctioned out to breath are not.

People are proud of what I DID, but not what I DO. Though what I DO is the equivelant of digging a tunnel with only a plastic spoon.....every week. But this blog is my last beacon of communication with you and when it goes silent, so does my inbox. No one is 'proud' that I went a day and a half without having intestinal bleeding. Nor are they 'proud' that I live a life eating the same food (for fiber, for vitamin value) every day, drink the same drinks for years. I have such little choice at all and yet, I manage to stay going by planning things out days, weeks ahead of time.

I worked for over a week for the book and paper sale, one I was too sick to attend (thanks Linda). I work as much as is possible for the ebay sale which is on now (another batch of books added thursday and Sunday to make a 80+ book lot), and the first 43+ book lots are selling sunday with another 40-60 selling the next week. Or that due to body exhaustion, oversleeping and drowning feeling of loss of control and a degenerating illness, my isolation has me in the second day where 'Help', 'Won't someone help me', 'I am not a monster' and 'I need love' are written on my arms, and face and no one at my appointment, the waiting room, the home care people in the has said a word. Why? I have the greatest invisibility cloak ever invented, BIGOTRY.

As long as I don't pick up scissors (at which point the Canadian police will likely shoot me), I am clearly someone who is fucked up and not in a way that gets better. And who even knows how to deal with, or ask questions about a person like that? Our society doesn't.

So, I get depressed, I go a bit insane, and still I have to take the mountain of pills, the drinks at the time of the beeps on the watch, the other acts daily to prolong life, a life which is, as I was told when I picked up 'Grace' a documentary on four terminal individuals, to rent, that 'It's long! And not.....' they drift off as they take me in (did they mean, no fun? Funny?).

I said, I kind of hoped that four people's last several months would take longer than nine or 10 minutes each. That got me a walk away, and silence for the rest of my visit. Oh, I'm sorry, was reality the wrong thing to say? I should have said that I was watching it so I could use parts to raise money in a charity drive as I crawl across the length of town? Maybe you would talk to me then? Sigh.

I really have no regret pointing out bigotry, since I was one, though I told myself firmly I wasn't a racist, I simply didn't have in common to talk about (hahaha! Seriously, that's what I thought). I suppose those who ignore me and those like me think that too, though 'I need love' seems a pretty universal message, and I did use a pen this time instead of a knife so it could be read easier.

In the anime, Haibane Renmei, there is a town, which has a wall around it, and while most people are just people, there are a few who come out of a sort of giant organic egg, with wings and halo's. We follow one teen girl who is born, and watches as others either walk out into the woods and disappear, they believe, over the wall, leaving a black halo on the ground, or stay, and the halo flickers and they run out of time. Only those with white wings will fly over the wall. And for reasons of the heart, often never revealed, the feathers turn black. Our heroine, hacks desperately at hers, until one of the older and sadder women show her how to cover her wings, or dye them.


I was listening to a song, Dance until I die, and as usual, it was banal in the 'knowing ignorance' our culture celebrates. Not a song where one has looked at death, or dying, or even applied taking care of your own Nan or Grandfather to the song, no just all of us as teens or 20's or 30's with the freedom of choices so infinite that we don't even realize how many dozen we take for granted just this last hour. The person with stage 4 MS was in their 30's, and they aren't going to be dancing till they die. And while it isn't what you wanted to hear, well, realizing that there is pretty much nothing I do which can or does garner praise no matter how much I push myself answered the question, "Am I proud?"

I live because You sustain me. I die because You ordain it. Save me O Great God. - I wonder, which the person was praying to God for? Until now I always assumed it was for life. (Don't worry, those in disability only have use for 'quality of life' when stable and showing why that isn't a reason to want to die). How, I wonder, did she do it, 16 months on a ventilator, in a room with eight people, never able to speak, never to see her house again, almost always with liquid in her lungs, and no air conditioner in the summer and she was on the side where the sun shone on her. We had a heat wave that summer. She was the same age as me, only I was the one who was 'scared', I was the one who got 'busy' and couldn't visit for a month. BUSY? BUSY??? She's lying there 24/7, the hospital didn't have a portable ventilator, and she has no library, no privacy, a half curtain, endless beeping, and I was the person to bring her DVD sets, not knowing how much that would mean to me later in life.

But I was TOO BUSY?? I was probably doing something like getting the Christmas Concert ready or the HIV/AIDS UN Capital events ready, you know, something to be PROUD about.

Friday, October 22, 2010

Pain is thy name: Kick-Ass, EFM as Superhero, & the sixth painkiller (and surprise good news)

News of the Year: I have a possible GP.So far he has passed five of the six tests already. He was recommended by the Hospice and Palliative Society for me, and while he is NOT taking patients, that recommendation got an initial meet and greet. I didn’t want to blog about it because the number of GP’s who have turned me down have been around 30, and another 10 or so specialist, so while I was nervous enough not to sleep, I wasn’t going to announce it as good news. Except:

1) Met with me, and didn’t immediately say that this was too complex, too thick a file. He did say he did mostly cancer patients and had not had experience with my condition….but he would take me.

Actually seems to listen to me and believe what I say, instead of immediately putting me in the ‘hysterical female’ grouping (come closer, I can be a LOT more hysterical!)
2) He met with me a second time, for 45 minutes and gets that doing a meeting like that puts me out for a day, also after disclosure of orientation (Him: 'so, who do you have sex with? Me: Her! (as often as possible, honest!) Him: So, not a lot of need for a pap smears for HPV then) and that dread initial diagnosis of ‘conversion disorder’ he didn’t drop me due to ‘religious belief’ or ‘not a good fit’ Oh, no, I am starting to feel...what is this feeling again? I think it is called, Hope.
3) Linda described to him about the pain of this week including moaning in sleep and he PRESCRIPED A PAINKILLER! Wha? Prescribe something for a problem? Does this doctor know how to be a GP in Victoria?

Seriously, he specifically prescribed a Fentanyl patch (lowest dose) which has the advantages of: releases for 3 days, can be applied even if I am in too much pain/autonomic failure to swallow or understand what is going on around me. He said “If you don’t notice any effect, we will increase the dosage”: after so, so many doctors have refused to help with pain due to having to use the ‘triplicate’ form, which means one goes to government. So, after going to the US hospital, their evaluation was ‘pain control was the number one priority’, and that was over two years ago. And now, I am PAST the huge 'three page form' wall and moving toward real pain control.

Fentanyl is 100 times more powerful a painkiller than morphine. Before you freak, that is dependant on the person, like for me, it might only be 95 times more powerful than morphine. Yeah, that was the joke.

But, Fentanyl was recommended to me because it has the patch AND can be prescribed in very small dosages, then raised as needed. I am now taking six different pain killers daily (good thing I have those six fingers on one hand, to count them!), and this Fentanyl is the third opiate/synthetic opiate. But if it actually makes the pain go away, that will so improve my quality of life. And with the better quality of life, I will be able to smile and joke (when you are clenching your jaw in pain, the funny goes away), my loving and caring spirit will emerge again to woo children and wildlife with its pure innocence.Or something like that.

So the doctor has seen me twice and is already working to improve my quality of life. Crazy! Is this doctor REALLY living in Victoria?

4) Plus he is talking about calling the Neurologist and seeing what type of mediciations, like IVIG or others which he can administer to stabilize my condition (I know, after over 100 tests from over a dozen doctors and none working to do that at all, I am in shock). It took over a year of constant trying to get synthroid and now, we have Fentanyl.

5) My concern is that some specialist have not told the truth in their letters (in person they say, ‘There is no treatment to offer you’, while the letter says, ‘Client was offered treatment and declined’ – odd that even specialists can do revisionist history if actions makes THEM look bad). I am worried that combined with what they might say on the phone will make it so the next time I see him there is the ‘I don’t think I am the best doctor for your needs’ (regardless that the neurologists haven’t seen me in over 2 years and as I said to him, “It is REALLY hard to be B-12, and Vitamin D deficient by ‘conversion disorder’)

He uses the UN standard, NOT the ‘minimum Canadian standard’ – Canada has, due to socialized medicine, some of the lowest ‘minimum standards’ in the world.
For example, when the UN goes to Sub-Saharan African countries they use a standard of Red Blood Cell count to declare someone ‘anemic’ and treat them. While the same person, in Canada, they are not low enough to be considered anemic,. Plus, even if they are the bottom or below a 'health standard' like being anemic, as Cool Aide demonstrated, many homeless people show up as anemic but are not treated at all.

B-12, which I have been low in, has never really concerned doctors, I have never been ordered to supplement OR get a shot immediately until NOW. In Japan, the lowest amount of acceptable B-12 (which causes nerve damage, sleep problems, and nerve pain), has been raised from 200 /pg/ml to 550 pg ml in 1988 while in the US 350 pg/ml is the ‘lowest acceptable’ level as even those at 500 pg/ml have been found to be ‘deficient’. Long term deficiency results in permanent destruction of the nerve stem in the spinal column. In Canada, you are not deficient until you are under 150 pg/ml. My father was at 39 pg/ml before he was treated, and I was in the low 80’s. I have been frequently been at 139-155 without recommendation for treatment (like over a year in that range with doctors not concerned in Victoria).

My doctor said that I was to take B-12 either sublingually daily (maybe more than once a day) or shots until I am at a MINIMUM of 250 pg/ml. Also, he said Vitamin D involves nerve pain and use and I am deficient in that and increased the prescription subliment by 50-100%. I am totally stunned.

I think this is called, ‘proactive doctoring’ but I’m not sure as I've not seen it in this city.

6) The GP said he liked me and that I was a ‘character’ or had ‘character’ or ‘would make him lose hair’, I one or more of those three.Plus he does HOUSE CALLS and understands that Linda will need to come in for me if I am too ill. Wow. Wow.

I dragged myself up to boxing yesterday and did my exercise, I was too sick to go the week before so I did a double effort to sweat: my sit-ups, push ups, and then worked the whole time on the heavy bag, doing speed jabs,
speed hooks and then combinations, where you use speed and accuracy. I did 4 punch combos, 5 punch combos (15 then a two second break, then back again, then two seconds off, then 15 more, for three minutes), four of my eight punch combos, then two of the 11 or 12 punch combos, doing each three times, and finishing with a 16 punch combination.

I felt exhausted but was sweating and endorphins made me smile.
All is great until the endorphins run out sometime around 4:00 am, the pain hit! I had put on the patch at 11:00 pm, but it takes 12 hours to be absorbed and right now, it isn’t doing much. So some bed time for me and the plushies.If I survive the next day or two, I will be able to see out of both eyes again, I am sure.

Last night, I watched ‘Kick-Ass’, a film based on the comic by Mark Millar and Steve McNiven. There is an excellent documentary in the special features about creating and inking a comic showing these two. The film was picked up by Linda and had the highest IMDB rating I had seen. It was amazing! The idea is about a guy named Dave, 16, whose only talent seems to be his invisibility to girls, and his crush on Katie, the girl with the locker just down from him. As he goes to hang in his local comic store, Atomic Comics, he asks his two friends, “Why is it that no one is a superheo? I mean, why do people just do nothing?” So while buying online he adds a green spandex suit to his basket. Thankfully in New York, you can hang around in a green suit with two baton’s in a holder on your back and not have anyone notice you. He did ‘patrol’, he did a lot of posing in front of his mirror but nothing really happened. That is until the two guys who mugged him were stealing a car, and he stood up to them.

They totally whooped on Dave, then as he staggered away, he was hit by a car and ended up in hospital. In the ambulance he begged the EMT not to mention his costume (cut away) to anyone. He slowly recovers (his statement that now many of his bones have titanium rod and plate reinforcements was “Cool, just like Wolverine!”). Dave also has neuropathy damage and he can’t feel pain that much. Or as he puts it, “My super power is a greater tolerance for being beaten”
Once Dave makes it out of the hospital, the good news is that Katie now is totally talking to him, and wants to be friends. This sudden break through of ‘cool’ is dashed when his friends tells him, “Oh yeah, um, well everyone knows about how you were found naked after some guys had their way with you, so um, the whole school thinks you’re gay.” And Katie gushes, “I’ve always dreamt about having one of ‘you’ to talk to……not that I think all of ‘you’ are the same or anything.” A choice of hanging with Katie as her new gay BFF or telling her the truth has him soon getting loans of Queer as Folk and doing ‘sleepover pedicures’.

Meanwhile, looking for a lost kitten, he falls on some guys after another guy. And decides to defend the guy beaten on the ground against these three full adults. He yells at a kid his age to call 911. The Kid runs to find the largest group his age and shouts about a fight instead, and everyone goes to video it. His ‘stand’ ends up on Youtube and goes viral. Suddenly, ‘Kick-Ass’ (his name for his superhero) is a real deal superhero.

Enter Nicolas Cage as a rather psychotic father, and his even more psychotic daughter Mindy (maybe the whole, ‘never going to school and only training to kill people’ doesn’t help). We meet them as Nicholas Cage is teaching 11 year old Mindy how to ‘take a bullet’ by shooting her. It was pretty much love at first sight for me. They are ‘Big Daddy’ and “Hit Girl” (she has purple hair and an outfit to match including a plaid school skirt and purple coloured knife holder).
She is also a totally lethal machine, who flips, shoots, knifes, and garrotes bad guys. “Kick Ass” scrambling away in green is like Amateur Hour on the Gong Show compared to her. Though sometimes, particularly with Hit Girl, they remind you that she IS 10 or so (he is only 16),reminded to you when a bad guy actually hits her and knocks her almost out, being all of 58 lbs and all.
You will have to rent or see the film for the rest.

The author, Mark, a Scot from a small coastal town had at 15 with his friend listed ‘Be a super-hero’ as a career choice and done weights and ‘patrolled’ his town. As he said, “It was a small village, and if we were LUCKY there were TWO town drunks!” But his comic, based on a lot of his experiences and fantasies, hit a cord and went right away to number one, selling out three printings. One of his instructions, besides the plotting was for his artist to have NO BLACK.

In Comics, from 1930’s onward everything was in white, with characters drawn on. However, in the late 1980s’ Frank Miller revolutionized ‘Graphic Novels’ by reversing it and having a dark black background in Dark Knight with everything drawn on THAT. Soon every one would follow. Now, Mark Millar wanted to do an entire comic with NO BLACK. What that did was a) make his comic look very different to other comics and b) make his other colours stand out. Even his publisher didn’t notice what it was as they told him after three issues, “Your colours are amazing, and your comic looks so DIFFERENT.”

Mark Millar metions in passing that he had ‘worked with Steve on a Wolverine type story.’ That got me into late night research as what story could it be? It turned out to be this year’s eight Eisner award nominations Old Man Logan, which I had on my wishlist until I found one on sale on ebay. Now the book, just released, “Kick-Ass” is on the top of my wish list! So, this is good year for Mark, a movie BEFORE the comic release run was finished AND Eisner Nominations for his last project.

So, go, go the red haze of pain: and if the ability to absorb pain can be a ‘power’ for a superhero, that seems like I totally up for the job then doesn’t it? Go EFM and her flying wheelchair of justice!

Other surprise good news that I won a review writing competition, and won two signed yaoi manga and a package. Woot! See, it totally pays off, spend all money on manga, and eventually get some free! Yeah, total sense - happy yaoi Halloween!
Also, I am having another/final ebay sale for the next two weeks of rare and out of print manga, or complete manga runs, including new ones. This is to a) raise some money for medicine/pain killers and b) put some savings away so I can raise money so that Linda and I can both go to Sakura-Con if I am here in the Spring. I recommend, Jyo-oh-Sei, which took 10 years to write, each book is 400+ pages and was so popular they made an anime (also a hit) out of it. It has two twins who are, without warning sent from the elite satellite station to the ‘Beast Planet’ – an unofficial planet where people are sent to die, since the death penalty is illegal. Only, people have lived, in this the EXTREME world where plants at the top of the species, and now these two brothers have to learn to as well, or die. Goong 1-9 is about, ‘What if Korean still had a monarchy’ and the story is loosely based on the UK (if Charles and Diana were teens), a girl is wed into this family, not fitting in, a marriage of political arrangement – modern but using historical Korean terms and monarchy tradition. While Les Bijoux is a great gender bender of a two spirited son, who has vowed revenge on the ruler who killed his parents. As a male, he works toward that end, however the ruler keeps seeing them when they are a woman, and falls helpless in love, and she is starting to feel something back. What to do when the other half of yourself is trying to plot revenge against your lover? Tough one! Another 50+ listing to go.

There is also a new post over at the postcard project, please check it out (comments here and there ALWAYS appreciated) – thanks for all the comments on my last post, it really made me feel better about opening up on my conditions that are most likely to exclude me futher from people.

Wednesday, October 20, 2010

Neurological Conditions: Dementia and living the life of a spy (with a review of Human Target)

Want to live a life of danger and star as a detective or spy, gathering cues and working under an alias? Who doesn’t? And all this can be yours…..with dementia.

I’ve been watching the TV series Human Target, which is about a couple ‘bad sociopath’ assassin/spy guys who are now ‘good’ sociopath rescue/help the girl/spy guys. Our hero, named ‘Chance’ not only likes to do dangerous things but has done so many of them that he and his crew have nicknames for them: ‘An Uncle Bob’, ‘Aunt Linda’, ‘Reverse Lifeboat’, ‘Thing with the house: the one with the flood not the ducks’. If you have someone who wants you dead and you don’t know who or why, then Chance and his crew are for you. Plus, he takes some very odd things as payment, including Whiskey, the ring of a pope and sometimes just odd lumps of gold. This makes the ‘rational’ ex-cop who is like the manager, a little frustrated, as he seems to want things that pay bills. Oh, what an old stick in the mud.

Human Target used the largest orchestra ever in TV history, and did original scoring by the same composer as Battlestar Galactica. It gives each scene a unique feel (It is like John Williams scoring), click here for the 1 minute, ‘Tango’ scene as he is undercover in the Russian Embassy. When you have no where to go, take ‘Chance’: he saves the girl, or more likely, walked out on her while she crushed on him so she punches him. The orchestral aspect and the use of things like old propeller planes which gives it an Indian Jones, man of mystery and action feel. That ‘timeless’ aspect is just what they want to take away, and though the Music is being released in a 2 disc digital and 3 disc set, having won an emmy (Orchestra music is WAY cheaper than doing ‘needle drops’ – the slang for ‘pop songs’). Fox hired someone to drop the music director and writer, eliminate the scores and give the show more ‘location’, and take away the action (each action scene has to be less than 90 seconds, and it is all action and adventure, with humor – and 12 hours of action stunts, all done by the actors makes about 70 seconds of screen time, using up to 100 different camera shooting angles). They want each episode to be more about the ‘emotion’ for each character: This means lots more angsty ex’s until eventually it is Grey’s Anatomy, that hospital too busy having hissy fits and sex to admit any patients, this will be an adventure show where everyone is too focused whether person X likes person Y to actually save anyone.

It is a great show which has all top notch stars, Chance is the cop from the hit TV series Eureka, while current movie and TV stars make up the side characters of clients, drug lords or old romantic flames. And it is show that keeps you guessing, as watching while Chance attempt to make a HALO (coming in from High Altitude on a parachute and pulling it at the last moment to avoid detection) on a blind camera spot of two feet at the top of a skyscraper is the ‘easy’ part of the operation. It reminds me of Middle Man, though without the strange alliterative swearing (“Great Louise Alcott!”, “Jumping Grapes of Wrath!”), the Furry odes, the Batman Jokes, and the cultural and literary references (or the vampire trout, or Vlad the Impaler’s OTHER hobby….puppetry). But it has the same, “Can Do!” attitude of the hero without the overt politeness of Due South, which makes you believe in the Good Guys again. And in a TV land where cop shows regularly torture people, and there are more serial killers than drinks in a vending machine, having a show where people and buildings get SAVED is rather unique. Catch this collection of 12 adventure comedy with our three men of mystery (“Oh, I already know too much about your evil ways, I know about the fire at the orphanage, I KNOW about that nun in montreal, so no!”) before it just becomes another ‘something to watch’ show.

Chance of course uses many aliases, and covers and the running joke is ‘Are you a (fill in profession here from Doctor, Lawyer, Engineer, Computer Tech, Explosives expert, Archeologist)’ because all of his covers, taken on the fly happen to be spot on. And his answer is always “NO, I not a (strange little intonation) Doctor” Which begs the question, ‘What are you?”

But how about YOU? Well, your assignment is: Try to live an independent life. Your Alias is: your name. Like this highly trained spy you will need to glean the small details from your surroundings in order to: know the names of people who are supposed to be friends and relatives, explain why you weren’t at events or did not pick up items, and come up with plausible reasons on why you don’t seem to remember important details. The trick is, don’t give it away in your face. Like action spies from Michael in Burn Notice to Chance in Human Target, a lot of people with dementia learn that the person who is with you can give you valuable clues if you don’t give away that you haven’t the slightest idea what they are talking about.

It is a stressful way to live a life, always trying to stay one step ahead of this person you are pretending to be: which is you. But the alternative is the bias which comes with ‘no memory’ = no use and thus be treated like a non-person. And that is not where you want to be, because once there, it is hard to have anything you say taken seriously. While you might not know the city, the street, how to get home, who the president is, and what the day, month, year is, or be able to do basic math, that doesn’t mean you don’t have skills. Or that you can’t engage people in conversation, even help them solve personal problems. The only difficulty is…..once they are gone, and you are alone, how do you find your way home again?
Linda has been going to the Dementia Society meetings which have given some very useful information, things that help me identify actions and behaviors that frustrate me and explain why they are happening. But knowing what is happening also helps me come up with ideas on how to solve them, and as I have seen first hand, just because someone I give a pool cue to can’t SAY where they were born, it doesn’t stop the muscle memory they have from whooping my ass in playing pool. There are good, functioning parts of the brain, muscle memory, language groupings, and the trick is how to get there.

Problem: Dementia from the variety of causes from Alzhimers to vascular (strokes, TIA’s), autoimmune, all tend to break down the control over the emotion. So there is not only Liability (overly strong emotional feelings which may not be appropriate) but reactions and looping. Reaction is when you can’t control how you respond, that ability to step back mentally and go, ‘Hey, this isn’t that important’. Combine this with the anxiety and question asking (asking the same question over and over because of anxiety, or just having feelings of general anxiety – and why not, when the one thing everyone assumes EVERYONE has control over: the brain and memory; you don’t) and you get ‘looping’.

Looping is like being in a long term relationship which is in a long term bad place, and one event brings up the memories of all the negative times that were like it. The trick to get out of it in a relationship is to stay in the NOW, one event, one hour, one time (and not ignore the now by looking at ‘what this will mean’ or ‘you will do it again’ – that’s the FUTURE, not NOW). The problem is that with dementia, memory, for me, because I have language and visual on both sides of my brain, are like bubbles, or jars which often can no longer be directly accessed. Piaget called this Schema, where there is a bubble or jar of images, smells, language, feeling all in a subset of experience. So the best way to learn or add things is to connect them to an existing Schema. With Dementia, you lose access to more and more Schema, and in the schema that are lost are sometimes what I call ‘bubbles’ which are strong memories and experiences, like ‘triggers’ for abuse victims. With Reactions, you are suddenly triggered into one bubble experience, then that triggers a similar bubble experience and so on. These bubbles hold you down, overwhelm you, and causes ‘looping’. And without someone to help you out, it can go on over and over again (literally! I have done the exact same 60 minute rant three times in a row).
For example, I am anxious about becoming homeless. That means, I ask Linda probably one to five times a day if we have ‘enough’ for food, pills, rent. If I am not reassured, then I ‘react’, which means my stress goes up and instead of finding out the whole picture, I can’t because I am literally running on emotion. Linda may have just come from dealing with problems involving medications costs, or she may be worried about how much weaker I am. And that distraction makes it so instead of saying ‘Yes, everything is fine”, she says, “I was just thinking about putting in papers for disability housing.”

What I hear EMOTIONALLY is ‘NO, there is no money for rent” and this with what she said links to “I am going to leave you” which links to “You are going to be put in an institution.” And so I get highly emotional, worry about being safe, and that brings up images/experiences of times when we have had no money. Then I have the images and experiences of how and when VIHA have pushed to have me in an institution and then I am fretting, despaired, and/or crying. How can you stop it from starting? That is when Linda stops and takes a breath or two and then decides to ‘act’. But if she is tired, or frustrated she also might emotionally ‘react’ (most people 'react' every day: yelling at a car that cuts you off is 'reacting' - it can't hear you, honest!). But when Linda 'reacts', then I 'react' and it gets worse. Linda has the ability to stop, to look at me and see the disease, but she sees the same face as her partner of years, and so how not to feel this is me lashing out? But it isn't, it is the disease and I am on a roller coaster which has no brakes. And I need her to see that. This is why some care givers can do well with people with dementia and others don't: the ones that don't take the actions/statements personally. The trick is to see PAST, to see the loud voice, the frustration and fear displaying like anger as part of this disease, just as much as getting confused or disoriented is part of the disease. For me, often it isn't anger, and it isn't personal it is desperation, a cry that says, "I'm scared, I'm helpless and terrified, please, understand this and help me?"

The big problem of 'reacting' for loved ones of those with Dementia is that the ‘loop’ of no money for rent/her leaving me/institution can take 30-40 minutes and if Linda reacts at the end, that just starts the whole loop over again. This is part of the disease. I might have already done this loop just three days ago, but I don’t remember that, and I can’t stop it either once it starts.

For those who give care and are close to those who have dementia, this verbal care is exhausting and they need support. Because otherwise, since the disease has broken down the memory/emotional barriers, it makes it hard to remember that it is the DISEASE creating this situation but it is the PERSON who needs reassurance.And if the PERSON isn’t reassured, then this whole negative experience gets added to the ‘loop’ or ‘jar’ or ‘bubble’ and the next time the loop is stronger, or longer because of it (and for a while, I will ask 5 times a day about the rent instead of 1 or 2 because the emotional experience increases the anxiety and related behavoirs, so for everyone's energy, both the person with the disease and the caregiver, keeping calm and reassuring is best).

But some plus things: Yes, I get emotional easily, but with the loss of memory I have and the barrier to emotion down, I can watch films that were favorites, and not know the story, and have an extremely vivid and emotional experience. The same with books, when the emotion is on (sometimes when fatigued it seems like there is no emotion and all is like breathing grey ash in a world of swirling grey ash) a good book becomes a riveting and fantastic book. But, due the same breakdown of emotion, unless Linda comes and gets me I will read the book all the night through, and the next one, and the next one….

So, how to be a spy in your own life? You have a brain disease and damage. Yeah, sucks but that is what it is. So you need to remember someone. For ME I know I won’t remember a ‘name’ like Sandra or Wendy but I might remember a visual image (Dementia is different for everyone, find out what works for you whether a song, a rhyme, an image or something else). I let the visual image which is strongest come to me and then turn it into a nickname. So someone with the name Wendy might remind me of ‘Windy’ if she talks a lot, but I need a noun, and think of windmill turbines and end up calling her ‘Turbine Girl’. Linda will know who that is, and if she is a worker I trust, I will tell her that is how I know her. Now Linda can say, “Turbine is coming tonight” and I know sorta who that is and am not worried. Then I can shorten that to ‘T.” and call out for ‘Tee’ or “Hey Tee, how are you?” – Which is a lot better than, “Who are you and are you a burglar?” This is how I have most people named: Dr., Charlie (that's one of Linda's), Errol, RB, Earth Girl, Desert and others.

Talking is hard because when people ask questions, first, the brain takes a while to try and find the right information. Dementia isn’t like a filing room where all the folders have been dumped on the floor but more like a bomb went off in your filing room and now there are folders randomly all over the building of your mind. And if you DO find the file, then you have to find the language section which has the words ('knowing' something but unable to say it is a common frustration). So instead of long pauses with nonsense words which make people give up and stop talking to me, I start the talking. I need to find something that I DO know, a Schema, which has the words I need already in it, and I talk about that (and as long as I talk about that, I can talk without stuttering gaps, like when someone with Dementia suddenly talks about the taste of a Candy they used to like as a child - fewer to no speech problems because that bubble or memory schema has the language in it). So when a worker comes over I talk about the floating of the Chinese currency, or the connection between Victorian fiction and mysteries and social class or travelling by rail in Europe. The memory this is coming from might be 10 years old but as long as I am in that ‘bubble’ containing the language and visual images, I am lucid and clear.

The person I am with gives me the information of what I am able to talk about: as I look them over I ask questions like, “Nice ink! (tattoo) What does it mean?”, ‘That’s a nice necklace, where did you get that?’ or ‘How did you get that tan?’ or ‘Where have you lived?’ until something goes ‘PING’ and I can suddenly talk about whatever Schema bubble or File folder has shown up. So instead of seeing me as a poor confused woman who doesn’t know the season, time of day, or current events, I am ‘intelligent’ and ‘interesting’. It is easier to stay 'interesting' even after they see you having some ‘bad days’ when you forget stuff, than the impossibility of them seeing you as your dementia, where dementia as an inevitability and any signs of intelligence are just temporary. Basically: control the conversation and control the impression they have of you.

It isn’t easy, and right now, brain boards and notes, aren’t cutting it anymore. A lot of the time I simply have to trust “Elizabeth” – the “Elizabeth” who did stuff before I showed up today, and I have to trust that I did the logical things, the things needed to survive. So I often ask myself, “What would Elizabeth do?” And the answer might be, “She'd probably write up notes in a document on the computer – find the last documents modified and look at them” Or ‘Check her internet history and see what she did.” (also a good way of finding out if I have ordered something and avoiding ordering it multiple times). It is also why I have hotmail and use Amazon as both are stored online and can be searched, and Amazon actually WARNS you if you have bought the item before. This is surviving, while having experiences unique to you alone, while outside 'society' (which assumes memories, and connections you don't have anymore) and without the companionship of your own history, separated from other minds, and part of your own.
Dementia is a symptom of a disease and it sucks. And there is a LOT that I can’t control about that. But I can read people’s faces, look at clothes, fingers for rings, nail polish, calluses, necklaces, how familiar they are with the room, if they look around a lot, and make some guesses about how often they have been here, and how well they know me, and give me a few ideas of questions to ask. And if asking about their tan ends up with, “yeah I went hiking again this weekend,” the ‘again’ tells me that she and I have talked about this before. So I adjust, I adapt, and I have conversations friend to friend. Sure, I won’t remember them in a few days, but if I don’t do this, then everyone touches me with kid gloves and I am always the outsider, the stranger, the person who never has anything to offer. Then I would be utterly alone in a mind that sputters with random images and words always escaping me.

I am a spy, and my cover is Elizabeth McClung

Monday, October 18, 2010

Looking at Edema, circulation problems, follow-up to pain and Sakura-con hopes

Welcome to the online Mystery Spot! Yes, houses are tilted, cars roll backwards and legs swell and drain in hours. I don’t how many have visited a ‘mystery spot’ – I have! I have! The ones with optical illusions. Sort of like a fun house except without the wobbling walkways and rolling barrels to get out. The barrel has always defeated me.

One of my first ‘funhouse’ memories was the Canadian PNE (a travelling summer fair), where I did everything really well, including the spinning optical tunnel with wind until it came to leave. There was a tumbling barrel, like a dryer, and no matter what I did, the thing just kept flipping me over, I tried to escape by reaching out in hopes of grabbing a handrail to pull myself out. But no go. There was much amusement from people waiting in line.

I go to Wales, there is a carnival faire that comes at Xmas and they have a fun house. In the UK, or in Cardiff at least, there are two amusements: one is to GO on a ride, and the other is to hang around with drunk friends and laugh at and harass people on the rides. So each ride has a crowd of about 40 people + in front of it just watching. And Linda and I decide to go on the fun house. Same thing, I am stuck in the barrel, luckily Linda pulls me free, to much laughter from crowd. I am mortified and disappear until the New Year approaches when we are approached by a guy who wants us to say hi to his girl friend on the phone...then he wants to kiss us. This random kissing thing from guys is a reason we stopped going downtown on New Years Eve. But help yourself to 'random drunk kissing' if you are in the area.

Sorry, beyond memory lane, I wanted to show you the edema, which is the pooling of blood/liquids in the arms and legs and sometimes torso. The day after the pain drain, I was on the edge with my body in shock almost constantly, shivering, and overheating at the same time. I slept most of the day woke up and my legs were like this. As you can see, one is THIN (thinner than I have seen in a long time) while the other is twice the size (with some very large and odd bruising). Later in the day, the left leg swelled back up again.

Also, the hands. This is within three to five minutes of waking up, and though the camera has ‘intellegent auto adjusting’ which is to make people’s skin and body look…well skin color: you can still see some wacky Reynaud’s in my hands and on my left hand, in the finger cuticles, you can see the purple/blue, while the right hand is pink. In reality (hard to capture on 'smart cameras'), my fingers of one hand were dark purple and the other hand was rosy pink to bright red (sometimes the hand just turns fire engine red). We use the ‘mood ring’ of the fingernails and lips to determine whether to go on oxygen. If it is pink to red, I am good, if it is purple, add oxygen, if it is blue, add more, and if it is black, um, worry a lot. Usually I wake then in an hour or two my body can’t sustain the transfer of oxygen from my lungs to my bloodstream. As you can see, even on waking, I wasn’t able to do that. Also, I had diaphragm difficulties that day (unable to swallow, unable to talk, and belches from trying to breath and breathing into the stomach instead of the lungs).

BUT, I went to sleep again and if I woke up the same I figured, “well, it has been a good run”, but I was able to not superheat, and got a bit more of endurance. I am still too weak to shower, but I am breathing, and not hallucinating quite as much: I was apparently frequently saying, “I am not an octopus, don’t make me into little balls and eat me!” (a treat at Japanese Festivals). Still, Eiki Eiki and I spent lot of quality time together in sleep mode.

While in recovery Linda has been helping me (watching episodes of 'Psych'), like here where we are playing cards.See the serious expression? That is because we are betting pocky (see it at the bottom of the picture, right next to the melon soda)! And I am out of dark pocky! But I do have Melon Soda, thanks to Cheryl picking up some in Seattle and bringing it over a while ago. I like Melon Soda.

The goodish news is that we have contacted the makers of one of my nighttime painkillers and they have faxed a sheet to one of the doctors who agreed to fill it out. Once they send it back, I get three months of compassionate medication. Which is WAY better than the 6 days of samples I have right now. So hope is on the way.

Also, thanks to some surprise donations (really, thank you!) we priced up Lyrica and the alternatives for nerve pain online. The problem is, we know the reactions to the other medications, and only Lyrica and one other can be used as a single pill for an anti-seizure medication AND a nerve pain medication. While two other popular nerve pain meds have seizures as a common side effect. Which means I would need a nerve pain pill and then two anti-seizure pills.

So a couple hours of research and options later and It turns out, eliminating the drugs I have bad side effects with, that Lyrica is the still best option. We found that the price is the same whether you get 84 of 25 mg or 300 mg pills. So we are going to order from a company we already use online (I am supposed to be 300mg+ a day). There is no generic for Lyrica (and won’t be until 2013), but the amazing display of kindness with surprise donations will cover an order for three months worth of the medication at the level I am on (plus we eliminate the $30 per month ‘filling fee’) - making it almost half price of what we pay now. So that is another week or two away, to survive, but we found six more pills, so now I am on 35% of the doctor recommended dose, which covers about 50% of my pain.

So the hope is to keep working towards a Fentynal patch, as the pharmacist says they can start at a very, very small dose and the patch can be applied even when I can’t move or the pain is so bad that I am not making sense or with diaphram problems and unable to swallow. Plus they last up to three days per patch. So, we have hope that, thanks to the kindness shown, we will have three months to work out getting the pain problem addressed with, and Linda some temp work to help income.

For me, I am ‘making money’ by reading manga. Yes, I am having a sort of final manga sale, which has me reading what I have so that I can sell a host of sets, many of them out of print. We will do that the end of the month, I am also selling my books at the Book and Paper show in a week. So as I say, it is what it is.

I plan and hope to go to Sakura-con this spring.Though not with the strange bulge 'down there' that so many anime girls have, which convince us that the illustrators must never really have seen females in that kind of 'having a girlfriend' way (a real one not a blow up one, says Beth, who has a body pillow on her bed with a girl in lingerie titled 'The Bridal Night') Why? Because most females don't look like they are packing for a drag king performance later (or was it the size KK breasts that defy gravity that clued us in, hard to say - but if you can place a dinner tray on your breasts stable enough to eat a three course meal, you either need breast reduction or you are an anime girl).

Because I was too sick to go to boxing this week, I need to get strong enough to go and sweat and get my circulation in action to keep me alive. Alive is good. And as someone pointed out to me, Hope is the key. To look at a future filled only with stop-gap issues where I am constantly in terrible pain until I eventually die is NOT something that I can keep doing, or something I think anyone can keep doing. For me, the mental refusal to stop, to quit, as evidenced by boxing, by trying to wheel outside 2-3 times a week and by getting out of bed every day, is critical to avoid quick deterioration. So though this MINUTE, Sakura-con looks a long way away and has a lot of things in my life to stabilize, I believe I am going to go, and with Linda and Cheryl. This year we can see the Cos-play chess!

There is now, which is important to live in, but there is also the future, and if there isn’t much hope NOW, then I need to find a future and what needs to be done to find that hope. Back to work at the ‘manga mines’