Wednesday, November 30, 2011

Honor to whom honor is due

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, November 29, 2011

When will spring come back to our lives?

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

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

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

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

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

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

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

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

Thursday, November 24, 2011

‘Subspace parasites’, brain boards and DVD sets

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Tuesday, November 22, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Saturday, November 19, 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Yeah.


Thursday, November 17, 2011

Pain day lost

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

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

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

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

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

Wednesday, November 16, 2011

Missed this and that

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

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

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

It is a funny old life.

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

Tuesday, November 15, 2011

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Sunday, November 13, 2011

‘Life is a playground…..or nothing’

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I still like having the playground of living.

Thursday, November 10, 2011

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

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

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

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

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

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

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

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

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

But god, I get so tired.

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

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

Tuesday, November 08, 2011

Gynandromorphs: the diversity of the world

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

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

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

Sunday, November 06, 2011

Citizen of Kingdom of the Wicked

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

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

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

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

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

Errr....fact check much?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My reaction? I started eating chicken.

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

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

Saturday, November 05, 2011

Failure frustrations, living on Estates and period peices

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

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

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

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

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

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

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

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