Saturday, January 30, 2010

the 'what if's, big C, and a quarter inch of thumb

A friend, never met, was buried today. He was a stand-up man, who believed in walking down to see someone to let them know that talking to them mattered. Some times you have to go seeking the answers. He mentored Linda, helping her to become the manager that people wanted to work for. He knew people, because people matter, and when figuring things out, it was out with a piece of paper and writing it down. Get it down, don’t forget that these are real things, real numbers, real problems.

He had a ‘let’s have a walk’ with Linda about me, when management was less than compassionate. He told her that when his wife had cancer, he decided not to miss a single doctor’s appointment. That how you live a life, and how you live with yourself.
He died of cancer a week ago. He was a sturdy man, and helping or caring about others never diminished that, it enhanced it. When Linda was worried about work and needed the big picture or what to do, I wanted her to go to him: he never had advice other than the best in her long term.

In a few days, another friend goes into surgery, the big C again. A year of testing to determine it was Lupus. Oops, no, turns out it was Cancer and spreading. I know the doctor who is doing the surgery and he is professional and exceptionally trained. One of the three specialists I trust. I’ll go visit in the hospital. The person said the one thing no one lets you talk about are the ‘what if’s’, that and how there are those who say, “I can’t take illness” as an excuse to run away and those who stay, “If you ever need anything…” before you never hear them again.

Cancer is never pretty, and I am not sure if it is survived or simply carried on? Chemo, radiation, operations, you might be able to go back to looking the same but the world will never seem the same, a place where the silent fears don’t whisper in the dark before sleep.

I have been out of it for a while, sleeping three times the amount I am awake, and still fevered. Today it was seizure cycles a and stroke build up, blood pressure 205/193 with heart rate of 128 (if you see this, go to a hospital) before dropping to a ‘safe’ 188/140 (yeah, don’t need to worry about clotted cream every day for tea – I jest). I had a lot of seizures, and felt like my ear and head was going to explode. But I’m here. I’m taking some DVD’s up to my friend in the hospital, to take the mind from the noise and the pain. Some romance too.

This morning I scraped the clotted blood on and in my tongue. It stayed. I had bit the tongue tip in two places during my sleep in seizures, maybe took a tip off. That’s not a ‘What if’ that just a ‘is that chocolate?’ to, ‘oh crap……oh well.’ No one wants to talk to Linda about the nights holding me from banging my head and limbs against the wall, and how she can’t shield all of them. Or what it looks like, or sounds like. I don’t know that.

Last week I had a seizure and Cheryl was there, she held my hand. I don’t know if it was the end, the after, the pre, the whole thing, I just know I couldn’t see and I couldn’t move anything but my right thumb a quarter inch. My whole world was that quarter inch. Was it Cheryl’s thumb? I felt hands that worked, thick hands which spent too many winters on the prairies, I know that feel. There were hands that have old calluses, wood I think, and new ones building and the wearing that will turn them some day into that fine leather, safe hands. Every ridge was my security blanket, every indent a place where I connected to the outside world. After a time she took it away to check me, I think, and I moved my thumb, moved it as much as I could but the hand didn’t come back. Damn. Slammed backed into a body in which the pain which comes from parts is so twisted it is hard to not think of myself that way, like something bounced off the front of a car.

The hand mattered. Feeling it mattered. The little differences ARE the big differences.

Love is what I felt in Cheryl’s hand. Love is what I felt in Linda’s voice when talking about the man buried today. Facing surgery, a suggestion of a laptop, earphones and DVDs, brings the question, “Where has all the caring gone?” and not from me. I dunno, when facing surgery, it is good to know that someone who cares is on the other side. And while we were working on how to help them, they were offering suggestions on how to help us. Like to like.

I wanted you to know that even to a person, unmoving, eyes rolled up or down or both with only a twitch of a thumb, holding a hand can make a great deal of difference. There isn’t just ‘What if’’s for those facing a dance with Mr. D. but for all those who know them. And running, however graceful, is still running. The man buried today made a difference when Linda and my life needed it. And I think he did for a great many people. He wasn’t scared to help to deal with the what if’s.

Wednesday, January 27, 2010

Terry Fox, Steve Fonyo, Rick Hansen and how 2010 Olympics affected them

While Terry Fox was running across Canada to raise cancer awareness and research support he said, “Even if I don’t finish, we need others to keep going.”

Steve Fonyo, a teen was inspired by Terry Fox and wanted to complete Terry Fox’s vision of a run across Canada to raise money for cancer. He also was an amputee due to cancer. He started five years after Terry at age 18 and he did it in 1985, raising $14 million for Cancer and cancer research. Today Steve Fonyo was stripped of the Order of Canada for his conduct: his charges of driving under the influence, prison time in rehab for cocaine addiction and other ‘non-heroic’ achievements. We are more like a family than a country, hypocrites, and loving the one son while hating the other.

What they omit is that in 1986 Steve Fonyo went on to run Great Britain from the North tip to the South as another marathon to raise money for Cancer. Fonyo wasn’t charismatic, he wasn’t a celebrity like Rick Hansen the world travelling wheelchair Paralympic gold winner, Pan Am multi-medal winner (photo here) and marathoner. Fonyo was labeled a ‘copycat’ and often criticized, while enduring hardship and by showing the same determination as Terry Fox (the ‘hero’ who endured close hits by truckers, snow, who told people NOT to run with him, had angry arguments for days with his best friend and swore like a logger). Fonyo even had his Red Cross sponsorship funding pulled for that determination when running through snow in the prairies. Why? No one wants to dare the implication they funded someone to endanger their heath. Yeah, Red Cross, because running a marathon a day is good for you?

Meanwhile, Rick Hansen, who incorporated himself (literally, he is kind of like a church), announced his ‘Man in Motion’ world tour with the emphasis on his inspiration from Terry Fox (who was conveniently not around to tell stories of Rick being an ass). And he did this on the back of Fonyo, once it became apparent that Fonyo would make it (about 2 months from his finish at the Pacific Ocean). Rick was competitive and liked being in the limelight. He knew how to make a good press conference, and had camera presence and experience, and knew how to keep being in the limelight from his years as a world class athlete. Smart enough not to wheel across Canada while Steve Fonyo completed Terry Fox’s goal, Hansen and his ‘team’ (support but also media and photo op personell) took off.

Rick Hansen’s press conference had more people (click here to see) than the crowd to see Steve Fonyo, who had run almost 10,000 km to dip his toe in the pacific at mile zero.
The statue erected at mile Zero though, was of Terry Fox, who while inspiring it, never made it there.

So after the UK, Steve Fonyo gets the Order of Canada. He has run 15,000 km+, raised millions for charity, given up years of his life and….now what? Well, ‘what’ means finding a job, so he became a mechanic, up in rough BC (where oddly Rick and Terry both came from). No statue, just young and tired.

Rick Hansen meanwhile arrives back a hero, and while Fonyo fixed cars and drank, Hansen made himself into a ‘foundation’, which reads like a mix between a dictator’s press release and a meglomaniac, online here (Hope and Inspiration is found under ‘The Hansen Effect’). Rick does not get touched, he touches others: he raises the hand of a teen in a wheelchair during a motivation speech (under the section ‘Hope and Inspiration’), he sits in the limelight as the header for the eight lesson plans for kids 9 and up, like lesson one, ‘Wheeling against the World’s Weather’ where kids as step one ‘listen to the Rick Hansen story’ and the aim is: “Students will appreciate the magnitude of Rick and his team’s achievements during the Man In Motion World Tour.” Did Steve Fonyo like the irony that the very weather that had his funding slashed is now a testament to ‘appreciate the difficulties…’ Rick Hansen faced? Not so much. Steve, did cocaine, and yeah, burned out. If you have already run for years, and raised millions and they put up another person as a statue where YOU finished, and Rick Hansen is being paid to BE Rick Hansen and travel around the world while you fix cars, where do you go that is up? There were some driving under the influence, and cocaine.

What they don't tell is that Steve Fonyo'a Order of Canada couldn’t have been removed earlier. So why now? Because over 20 years after his accomplishment, in 2005 in order to try and get rid of an disbarred and corrupt lawyer, new ‘codes of conduct’ were not passed to get people OUT of the order of Canada. And of course, with the Olympics in Vancouver ('The World Comes to BC!'), where Steve, Terry and Rick are all from there are expectations.

Rick has just be made the co-mayor of the Olympic Village, while the organizers, against everything that Terry Fox stood for, announced a Terry Fox Award to be given at the 2010 Olympic games for “created to honour the Olympic athlete from any country who displays the most courage, humility and extraordinary athletic ability at the 2010 Winter Games.” In gagging irony it will be given the second to last day to an Able Bodied athlete. And Steve Fonyo, the mechanic and not beloved son? Why he gets ‘officially’ kicked into non-existence just before the start of the 2010 Olympic games.
While Steve Fonyo gets the shaft, so does Terry Fox, since Terry Fox created the Terry Fox Run, a run that specifically has no entry requirement, no entry fee, no ‘winners’ and NO AWARDS. Nor can any money go to anything but cancer and cancer research as anyone can and is encourage to set up a run (the Terry Fox Organization gives you all the materials and a booklet) “It does not have to be a big event – whether 100 people come out, or just 10, it still leads to progress for cancer research.” Run is actually a misleading word as you can walk, bike, hop, wheel, roller skate, skateboard, or horseride the 1K, 2K, 5K, 10K event. It is about community participation, it is about cancer experiences, remembering, and raising money for cancer research

Wheels in Motion also has a organized run, once which I have protested. Because while it raises money, much like the webpage which has on EVERY page a ‘donate now’ button, including a form on how to give gifts of publicly listed securities in the name of ‘every wheelchair user’ the money goes toward one particular type of wheelchair users; traumatic SCI’s. While Fonyo’s May 29th gets a few laps in school in memory, and Terry Fox gets a run for fun in Sept, Rick Hansen has lesson plan 6: Students will gain a greater appreciation for the magnitude of Rick Hansen’s Man In Motion World Tour and the incredible achievements Rick and his team accomplished.” The Rick Hansen Foundation announces proudly they raised $55,000 from school programs in three years. And the run has an entry fee, a fee that does NOT go to research, or programs, not even to ones for traumatic spinal cord injuries, it goes for his salary, his wife’s salary and for the cost of fundraising.

The 2008 audit showed that 65% of the money into the foundation went to programs, grants and endeavors. But that 67% of the money coming IN was from provincial and Federal grants. Yes, ALL of the programs under the name of Rick Hansen foundation (including the school program on learning the accomplishments of Rick Hansen) are paid for by the government. So what do the runs, those 'Wheel in Motion' fundraising runs for 'all people in wheelchairs', the other individual fundraising and donations which is 30% annually, pay for? They pay for salaries and for the aggressive fundraising that the organization does. ("Ald. Andre Chabot, Mayor Dave Bronconnier, event co-chair Barry Lindemann, and Ald. Joe Connelly, celebrate their team's hard work in the Rick Hansen Wheels in Motion relay race yesterday. The event raised more than $80,000 benefiting people living with spinal cord injuries") You wheeled/ran for spinal cord injuries, but you paid for Rick Hansen to be….Rick Hansen. And that makes me mad, the people lied to, including those with spinal cord injuries.

The fundraising page looks like any fortune 500 company: ): “We need to be able to attract, retain and motivate a team of highly-qualified individuals to help us continue to succeed, in a very competitive marketplace. The experienced leadership necessary to lead these complex initiatives is part of what makes RHF extraordinary. Our team is responsible for the success of our innovations and resulting impact we are able to have.” Wha? They are a charity right, or do they make advanced electronics?

And learning from Jerry Lewis, they pimp the children. And that is why I protest Rick Hansen, because he does not represent all wheelchair users, does not educate people on wheelchair or disability but he does USE people. He just doesn't educate them, not even to the complexities of Spinal Cord Injuries. His new poster children (seen on every page, right next to the Donate button): Six-year-old Aluki Chupik-Hall (scoliocis) (who had a ‘Rick Hansen Theme’ fifth birthday party) and thirteen year old Hisham Mohammad with SMA (Spinal Muscular Atrophy) whose message is ‘be like Rick’ are used to raise funds for traumatic Spinal Cord injuries. No information or education on SMA or childhood scoliocis is given, and misinformation, like when Hisham, with SMA refers to himself as a ‘parapalygic’ like the traumatic break at T10-T12 with Rick Hansen, there is no correction. We are lead to believe this is a mini Rick. Rick Hansen doesn’t have SMA, nor does he fund programs for SMA. However, if your kids are too old for the school lessons they can always go see, the Rick Hansen Play, Rick: the Rick Hansen Story (Ticket sales and school and other performances here).
Do I think Steve Fonyo got the shaft? Yeah. He made human mistakes and he paid for them. But he also raised millions of dollars over 25 years ago that while the only recognition given to him has been stripped away to silence him, the money raised isn’t about to be returned (or honored). I don't think he even gets free tickets to the Olympics? I bet the Mayor Rick Hansen does!

The 2010 Olympics seem to love playing with bodies as they have Terry Fox (who likely wouldn’t have made it into the paralympics and was about participation now having a named award given not to raise cancer, not to raise disability or accessibility awareness, sad that. Nor does it highlight that Canada is in the third DECADE of debating a National Disability Act but Awards celebrating ‘extraordinary athletic ability’: basically the guy who slogged it around with a home made leg doing a hop and step to grit his teeth and go on is created into an award for in-born athletic ability? For Able Bodied Athletes? Ohhh, listen, you can hear the rolling in the grave now!

Sunday, January 24, 2010

"I am not 80!" and other relevant topics

Okay, here is the 411 (or Wiki) on me. I worked through the night with Linda and Cheryl to do postcards: please leave your sanity on the coat rack by the door. Little buzzed, and on continuous, and purple. Got that too much work, sleep buzz. Oh yeah, have a fever: week 5.

I had a sort of New Year wish thing, which was that the Make a Wish Foundation would allow R/18 rated wishes. Then Linda and I could do the naughty on a tour of hot tubs which happened to be by all the people who read this blog. A visit with friends AND the naughty

– no not together, this isn’t the voyeur devo lesbian tour.

That reminds me, I had a new night worker, liked her. I like her, yet somehow, first topic was to ask, after letting her know she did NOT have to do any anal evacuations (the good news!) if, THEORETICALLY, they would be for or against assisting me move to different sexual positions?
Odd look from worker. Must have forgot something. Oh right, told her it was not just me, you know...with Linda in bed.
I stopped.

I realized I was being rude.

“Oh sorry, jumped in, um, did you know I'm lesbian? Cause I am.” Turns out she knew before she came. Okay, good. Wait? How is that? Is it on the staff bulletin board?

Her answer is no, will not assist sex positions. But she will give me a bit of boost when transferring. Oh well. I have no idea if there if going to be a complaint or if she is coming back. I kept going. Why is it once I start speaking the naughty, I just KEEP going?

I said it was unfair. Since a lot of workers have partners and they get home and want to snuggle, want to do a bit more. I have a partner, only I have a night worker to take over when partner is ready to sleep. Except while night workers gets to have sex, I am not supposed to BECAUSE night worker is there. I had missed the ‘nun’ clause in the care plan. She is listed as tasked for dressing and undressing, (see, she needs help undressing/dressing) and I have used care workers to help me with corsets before. But for strap-ons? No. Because I am disabled, because I am needing a proven pain relief and relaxation technique, I can’t because….I am being taken care of.

Worker has look like my face has opened up and there is a nest of snakes writhing around. I try to make it all better.

‘You know how you wake up horny sometimes?” I ask. The look of sort of fascinated horror while staying out of arms reach from worker intensifies. Best to keep going: “Me TOO! Oh yeah, I am disabled, I am dying but I am not dead yet, you know! I still get those nice erotic dreams and wake up ready. And it is: where is the book? Where is the fantasy and most important, where are the SEX TOYS! Vibrator ho!” Plushies confused, true, but no time to explain.
“And THEN!” I raise my hand to illustrate the frustration. The care worker jumps back a bit. I go on, “Then I am good and going and things are starting to, you know, the hips moving or I think they are moving, it feels like it inside my brain that feeling and that itch, going up, up, building and BAM. The phone rings: ‘BEEP BEEP’, ‘BEEP BEEP’ – the day care worker has arrived to be let in.”

“What am I supposed to do?” I ask plaintively, “Should I let them in but keep on going? Is that what they are going to walk in on while making sure I am not dead and on oxygen? I mean, they masturbate, care workers masturbate, and we masturbate, disabled women and you probably masturbate.” I try to make the night care worker feel included. Her round wide eyes show maybe that not best move ever.

“Or am I left with this……FRUSTRATION while offered…..grape juice…..a laxative?” Sigh. “My life. It is all run by the timing, the workers only….my orgasms do not follow Beacon Health Care timings, and a laxative and a orgasm is something altogether different” (please do not share story contesting that!)

This is turns out is not that way to convince the night worker I am intelligent and stable person to work for.

Earlier, another bed day, new worker comes in, I lean WAY back on pillows so they look upside down as my head is backwards, hair hanging down the back of the hospital bed. “I am a doctor!” I say, “I am really smart, honest!” Okay, not subtle, kind of like eight year old saying they are 8 and three quarters.

I can tell, even upside down, that clients who are sprawled all over a hospital bed claiming degrees are not to be believed. “Seriously, I am smart, you can ask me stuff, it is just I get seizures and can’t talk, or talk slow and so people think I am dumb or they treat me like I am 80 years old….. ‘time to have a rest, dear!’ I hate that!” I look the worker upside down in the eyes, “I am NOT 80 years old.”

Did I mention having a fever for a while?

I hope they come back.

Wednesday, January 20, 2010

Four letter words, use them, abuse them!

Okay, I tried a new four letter word today: REST. I slept and I stayed in bed for like four hours. Then I slept again. Okay, see, I CAN rest. Admittedly, I spent that time doing emails and then afterward I did two blogs but that is CLOSE to REST right. How about we call that half-rest? Quarter?

There is a new blog post and a new layout at The Postcard Project.

I am at home, as it turns that there are lots of ways to hurt soft tissue, and most of them involve the skin turning funny colors later, but not a lot require a hospital. Not in this province. Oh, about the fall, the wheelchair is FINE!

Last night, I was up late. God, why so many colours of pain?

Sometimes I try to keep my face immobile to pretend the sobbing ain't happening.

Thank you for getting it, the last post, those who did. Thank you.

Right now, even resting is riding the wave. This is a picture of Cyclops the most deadly wave in the world....almost.
Waimea, it was forbidden to even Hawaiians and just the back surf had killed two surfers when Greg Noll went to ride it. His words describe what this disease stage feels like for me. Still alive though. But like Noll on the big killing waves, “Instead of getting smaller as I rode it, the sonofabitch grew on me. It got bigger and bigger, and I started going faster and faster, until I was absolutely locked into it. I felt like I was on a spaceship racing into a void. At first, I could hear my board chattering across the face of the wave in a constant rhythm. As my speed increased, the chattering noise became less frequent. Suddenly there was no noise. For about fifteen or twenty feet, I was airborne. Then I literally was blown off my board."

Greg made a special board. A giant surfboard for giant waves. And December 1969 a series of storms came together from different angles to combine into channeling all power and fury on that tip. Greg went to Makaha where black waves so large they had never been seen before in Hawaiian history were slamming over the beach. Alone on Dec 4th, none of the Waimea surfers daring what seemed sure death, Greg Noll paddled out into waves so large, they made the shore dark. He went on to surf the biggest wave ever ridden, before or after, eighty feet plus, before wiping out.

When stage two of autonomic failure is occurring for over two week, three weeks and there has not been a regular heart beat for how long? It is riding the wave.

Even resting is riding, the chattering noise become less and less. I don't want no noise. I want a bigger surfboard.

Sunday, January 17, 2010

A bad Fall: damage severe

Bad news and um, bad news. I am supposed to be in bed due to a bad fall lateral from my wheelchair yesterdaywhich gave me: a concussion, whiplash, a something rotator something in the shoulder, partial dislocation, torqued back, sprained wrist, ripped muscles on four ribs and between the ribs and slight sprained elbow. I kinda went sideways and smashed my head so hard that all I saw was this red flash (it as very odd, if I had seen ‘POW’ inside I would have thought it was a cartoon) at this point my shoulder slammed down, then other parts, most not arriving atop my head. But as my head was twisted (kinda like an owl!) and I couldn’t move, it turned out later to be very, very painful. Which is why one handed typing is slow and this blog post is short (9 hours later....).

HOWEVER…..the comments were so good on the last post, and I really appreciate the people who made them, I have responded to every person, so if you have any other observations/questions/things to share after those responses, that would be cool. I want to do a blog post on chromosome 17B-3-HSB and what a Canadian doctor in Palestine is doing (which isn’t really that nice!). But that is after lust, desire and tea. Gotta take time for tea! Nice hardcover book she is reading too.

Okay, finished ALL the comments on the previous post, on Intersex, please let me know, keep the dialogue going. Text me, write a comment?
I am high and low on pain killers because so sore and don’t want to lie down until this is done! So on to the important question: In school, where you the one who wrote on others with your markers? Wrote on yourself and were sent home having coloured your fingers multi-colours? Or the one who was written upon? What I found out is that in this picture, Linda went, “That’s me.” And I thought, “The crazy girl writing on people, I NEVER knew.” And she continued, “My friend F. used to write on me all the time.” - ahhh, she was the passive one written upon! For me, I was the wild one, but I couldn’t by nature and ethics force myself on others so I wrote on myself. Indeed, in high school one of the assignments I gave was to write a poem ON your body and see how the poem you write changes when the medium you write on changes from paper to your body. Great idea, and a great way for a student teacher to end up with the educational supervisor going, “You told them to do WHAT? No, you tell them to read 20 pages of Lord of the Flies and answer 10 questions, no writing on the body, non of this ‘poetry boxing matches’ you have….we can hear the screams and cheering all the way into the office! Just follow the syllabus!”

Oh, how to explain that 15 year old girl taking off her top in my class while popping gum going, "I call this: Cleavage"....uh....distract...."Would you like a cup of tea, Supervisor?"
Tomorrow Linda has promised to help me bath, oh boy, rub a dub dub – is there room for two of us on the tub bench? We shall see! Linda keeps wanting to put me to bed. Which would be great if we went in together but she wants me to be in bed just because my hands are so purple you wouldn’t believe or I am ill or I still have the whiplash and I pass out a lot (is 25 times a lot? I think it needs to be like 30 to count as a ‘a lot’ right?). Basically my plan of ‘Do what I want while Linda isn’t looking and then go, ‘oops was I not supposed to do that?’ isn’t working because during my cute, ‘oops was I not….’ I end up stop breating and faceplant (messes up the hair too!). I did however get some things to send to people sorted that I have been meaning to sort for weeks – yeah! Loss of time and faceplants – boo!

If you give a damn about this blog or about me, and oddly, I think of my readers as my friends, and that I have dozens of correspondences I enjoy. So the truth is, for a while now, we are just trying to get to the end of each week. And this week, the preparation to make the final move into hospital was made, and it was Linda’s FIRST choice. She HOPED I would not regain consciousness so she could transport me to hospital, even though there is little they can do there. That is how bad it is. I am not ill, I am not dying, I am visibly declining in health at a rate which would be weeks or months in days. We talk of Sakura-con, and we talk of where exactly to scatter ashes.

I am beyond the rim of the cliff. Okay. I fell. I didn't die, but I didn't get better either. I fell down and I am on a little ledge and I hope damn it that I can get back up and climb back up, but without significant rest, like week to weeks of bed rest, that is simply impossible. And yet, with the gravel and movers, I can't rest in bed. I have had a fever for a month straight because my autonomic system is failing. I cannot sleep to rest, or even lay there. No laptop, no TV. No use of one arm.

To give a SINGLE yet graphic example of what is needed so many times a week, those 'difficulties' with my intestines means that I am in a small room, with no air conditioning, and little to no natural lubrication after daily preparation, three times a week for about FOUR HOURS. I do that so when I leave, I do not have jaundice or toxins building in my system, though sometimes, I do, and the puss comes out my eyes. When I leave, I am exhausted and I have the physical after-effects of being forcible violated.

Yeah, that’s right, raped. I am being raped every week by this disease, LITERALLY. I bleed from my intestines, from my anus. That needs to heal, only it has little time before the next time. That is one of dozens of things I have to do in order to stay alive. Most weeks I bleed from my anus, from my nose, from my mouth, and last week from my ear, and puss from my eyes. I drink 2 liters a day of water, every day, to get out the toxins. I have been drinking gatorade for years and I hate it. I hate it and I drink it. Only lately, I have been too sick to eat. To weak to drink. Because I no longer have my ability to externally do what I need to survive, my body literally withers. You would not recognize one of my hands as a human hand anymore. It bleeds inside regularly. This isn't a metaphor, this is life. This is my life.

If you care, you should know because I am telling you now, I have no interest in being told to ‘go into that good night’ or ‘fly away’ but I want to go to Sakura-con, I want to see the cherry blossoms.
So, Help! HELP! Can anyone hear? Do you know what I do when for four hours I am having bits of my flesh in my colon ripped away so that I can live? When I am not screaming, or moaning, I try to read something to look forward to, I read manga. Manga is medicine. DVD’s are medicine. CHOICE is medicine. When I spend all my time, for as long as I can remember (the mid term memory problem, right?), just trying to survive, with nothing to look forward to because I stayed up and read all the new books/manga in order to stop bowel impacting and now I lay in bed and wonder how much blood is pooling around my anus. Is it staining the bed? And what I have to look forward to tomorrow? To having to do THIS. AGAIN.

That is why a $5, a $10 gift certificate matters, at Akadot, at Amazon, at Because then I have now what I did not have before. CHOICE. I can send a gift. I can get Linda a romance. I can get something for myself. I need a DVD player for the bathroom for when I cannot read, and for the times when the noise is so loud outside I cannot do anything. Linda found one for $50, and it is on the wish list. Will it make me happy? I think you misunderstand, it may make me LIVE longer, make it so that I LIVE the 28 days until a new neurologist appointment. LIVE until a new GP appointment. LIVE. Or if you want you can donate $50, and my first of 8 small bowls of pills costs $16, my second costs $8, my third costs $17 – three bowls of pills: some for my immune system, some for the free T4, and the rest is pain, pain, pain medication. And it helps. Kinda of like when you ask a new parent how they are sleeping and they look at you with the thousand yard stare and say, “You know, now and then.” Yeah, I get pain relief….now and then.

Never you mind, just keep thinking of me as the postcard project and as the indomitable Elizabeth with squirrels. Because you haven’t bothered to adjust your view of me with the disease. You don’t realize the level confusion, fear, pain that I live in every day. And that Linda and I work to get to the end of each week with me alive. That is why I haven’t returned your email. Yes, brilliant brain, but also a terrified child, becasue I am also someone whose only memory is pain as if someone had ripped the skin from my back with a whip of chain mail. If a friend, will you love ME as a friend, the ME here? No, not the me who started this blog, but the me who is here now, struggling, still fighting every day, but someone who is, in many, many ways, in need of understanding, and of soothing calm voices.

To say, I understand, no, to understand is to know I forget every few days, to know that everything you send gets a post it note, and so you leave messages of love for me. That is just one type of understanding. I might forget ever few days but still, to live, I have to go and do a dozen terrible things a day, every day, on and on for....ever. So for the child me, a little something more often makes the difference because that Beth made it this week (thank you W., you helped, all those weeks, you really, really helped). She is alive, and it seems that there is a ‘yes, yes, but show us, give us the posts, be there’ – I am here, because I have fought hell, and you want me to go back and fight hell again…..without a single thing to look forward to. This week I spoke to two people. This week I looked outside three times. This week I damaged almost every part of my left side and I have a cut on my face on the right. There are NO reserves. I am fighting to be here another year by being here another week. Now I am fighting another hour and day to be here another half week…that’s it.

Why the hell should I? I don’t know, I don’t know, I go crazy trying to tell people, “I care, I care” and having bits of love, tangible bits of love. No, no, not the gifts. I have sent out, in the last month, about 25-40 manga as gifts, so say Cheryl and Linda. I have received in the last month…..four? In the month before I sent out 18-24 manga as gifts, I received……(according to Cheryl and Linda)..none or one.

I know in my head that people care, I know that people send gift cards sometimes, and that is good. It makes it so I have something to look forward to, so that room isn’t just the room of despair.

I AM thankful for every bit of choice that allows me to claw an inch forward. That helps me wake up and do what needs to be done that day, because I have to look forward to deciding what CAN be done, as I have a choice, a gift certificate perhaps. Except I am too ill to be able to get out of bed for two days. I know every inch of that wall. When I sleep, when I am half awake I think that my hospital bed has chains across my legs, that it is like a walled crib, holding me down for the disease to eat another piece of me.

I want to read a romantic series that gets me aroused. Don’t you? Make me blush, find me some gentle sweet uke to grow from innocence. I read Butterfly, Flower A story where the daughter of a noble time honored family who has run into ruin is asked at her very first job interview (as she was trained to be a princess of sort), for an office job: “Are you still a virgin?” She is mortified, answers yes, gets the job and asks a co-worker, what was with that 'virgin' question. This produces a big laugh, as no one else got that questions and second, 'Who is a virgin these days?'

Her male boss, after he is so mean to her, she remembers is her male bodyguard/nanny, sworn to her. At work his is the manager from hell trying make her a perfect elite office manager, but one minutes out of work, and he won’t let her ride the train, but drives her home, calls her, ‘My lady,…” because she will always be of the noble line, and the young girl he promised to protect. Problem is, she falls for him. He doesn’t get it. She kisses him. He says he ‘understands.’ Whew, he isn’t as dense as she wondered. He continues, “you will one day meet someone suitable for you and need to practice your kissing on me, I am always here as your servant, my lady.” AHHHHHHH! What will it take for him to get a clue?

Ooku volumes 1 and 2 – put out in the deluxe edition, winner of the Eisner award is an Edo period love story. Japan has a plague which kills 75% of the men. Poor Samurai family sell their son’s seed to survive, prostituting their children. One man only has sex with poor women, women too poor for his ‘noble’ seed. In a world without honor, he decides to enter the service of the Ooku, which is 3000 males only, except for the female Shogun. There are two books so far, each book is a complete story, and together they are a complete story. Together they tell a story that inspires me to go on. It tells me that sometimes greatness is not having a title, or being famous, but in being there, simply being there for someone who is wounded in the soul. Like chicks huddling together, I can identify, knowing only the hands and hearts that show love, my memory is in who I shrink from, and who I lean against. It is a yaoi romance, it is a straight romance, it is a romance for all time. It is about the after-affects of rape, and the pain and suffering that come from it, as well as the cost of keeping ethics in a place where all people care about is position and power.

I read the whole series of Cynical Orange, now done, in nine volumes, the retelling of The Little Prince, as The Little Princess, a girl lost and the idea of appearance, and dependency.

These aren't manga tucked away, just something I read on the bus, this is something I read after I pray to God, “Please, let it be over, let it be over quickly.” I read it when the tears of pain are cleared from my eyes,because I don't want to smudge the pages. I grip the pages and try to read the text, because it helps to relax, to have something to look forward to. It makes it easier.

Before you tell me: The magic bullet (anal suppository) does not work for me. Senecot does not work; Milk of Magnesia does not work. It is not just the colon, it is the whole system. It is what I eat to slow the blood that comes down my intestines congealed to the sides of shit, the blood that runs down my intestines, pooling in the colon. It is the roughage I need so things move, yet same roughage that cuts me up (but less of that). It is the balance. A single carrot, can leave me bleeding for a week.

This is hell, but it works, and I live. I live and manga is what keeps me sane. And every person who gives a manga, there is a post it note with a name, and in the middle of the night your name is whispered, “Thank you, thank you, thank you.” Because you made 30 minutes something other than rocking and letting the tears fall.

Someone wanted me to put the medical stuff up at the top of my wish list. I didn’t understand. It IS.

To be somewhere else, to feel something else, to want to be in an adventure. Now, so disabled, I am a child again, emotionally, and in ability. I dream of things I want to do, of places I want to see. And books and manga and DVD’s and artbooks are the way I do that. They are the way I communicate to you, and the way I communicate to me.

Do you remember the wonder of a child, of exploring a place, a simple building that you had never gone in before? And inside is a wonder, you learn it is a pipe organ but for you it is a wonder, and there is a kind adult there who listens to you, who tells you about it, you maybe lets you play. These are the emotions I seek.

I cannot go outside, I cannot wander into buildings, and I am entirely dependant in my life on kind adults, and yet totally at the mercy of cruel ones. “Why do things have to be so hard?” Linda says, “I think about it and I don’t know, I don’t know why.” We just hang on, go on.
I find wonder in art books that I get from Japan, where the diversity of art is amazing – Pop, one of the great Artists in Japan is doing the entire fairy tale series, from Red Riding Hood to Little Mermaid – there is one on my wish list, as it is translated to English. What person with a serious degenerative disease does not understand Little Red Riding Hood and how hope is turned into despair?

Well, on to the slumber then, the mess of a slumber party is a lot more like THIS, with people waking at different times and snacks and crying and living. Not quite the lesbian lingerie parade. This is human.

I long for the spring, I long to read Ooku 3 or Butterfly 2, which Linda says are not soon but not far-far either. I long to get art books. And I long to give out the presents to my friends. Sure, I feel like the kid suck at home sick over summer break, when everyone is too busy to remember, because that is who I am. I still open myself up, wide open, in every blog post. I want to live another year. And I pay, I bleed in bleakness each day to do that, each hour of each day. And right now, well, it is too damn close. Losing is dying. My dreams are in red.

Let me just think of the spring, when the cool means sweating or not doesn’t matter, and I will have been able to have my hair cut and will be outside, reading a book for....pleasure. Linda reads to stay sane, for both of us; I read because if I scream I will wake Linda up, I read because I want to be at a ball, or talking to people, or working at an office, trying my best. I am so willing to join the author and fantasize.
But sometimes, I do break down sobbing when I have to come back here.

Thursday, January 14, 2010

Cat 'Aww!', woman as construct, crossdressing and Intersex/DSD issues

Last time I blogged before the video, I mentioned in a blog post about how the societal expectation of women is a construct, one that is expected by men and maintained by the silence of women.

Part of our western womanhood is beening taught that if we are NOT like the Barbie/June Clever image then it is shameful, embarrassing, and something that if talked about at all, is talked about, or rather TOLD to you in a female only assembly with the instruction of silence. Always told not to tell.

So who then is to blame the guys for being a little confused that women have all sorts of things they just ‘don’t talk about’? US! That ranges from disordered eating, facial hair (40% clear facial hair once a week, 5% every day), hair loss, balding, monobrows and thick eyebrows, PCOS, extreme cramps, extreme PMS, periods every 10 days or once every 2 years. Of course we NEVER fart and we don’t ‘sweat’, we ‘glow’. I am sure that each woman could list how they are not…. Fill in the blank. Is the ‘Swimmer Shoulders’ or even the host of disease which only now are not just considered ‘women’s disease’ like CFS/M.E. and fibro. Why a ‘woman’s disease’? Because it goes in the section the general population and most men either don’t understand, don’t WANT to know about, or is just part of the mystery of ‘you know, women get……stuff.’

Only in the last year or two were the same sexual disorders men have like lack of arousal (erection issue for dudes) which were present in women (no sensation or too much or constant sensation) were considered to NOT be part of a) a psychological issue stemming from the woman and b) probably Post Traumatic Stress Disorder. And that is AFTER studies show MRI’s that women are telling the truth and even then, it takes on average a woman FIVE doctors before she is believed.

If we had a stack of medical diseases and conditions that women who had them were blamed and shunned for having them, it would be quite the Tower of Babel. Of course, that shunning also induces silence, when the word ‘hysterical’ is involved, or is blamed on psychological factors though that includes, or has included, MS, seizure disorders/epilepsy, Autism Spectrum, CFS, Fibro, Lupus (yeah, that used to be ‘mental’) along with most genetic disorders (now only believed due to genetic testing).

We are part of that silence. We too easily accept that there is ‘too much’ to know and that stereotypes of what we shouldn’t talk about dictate our responses. I too easily accepted that, and in parts I still do.

Intersex does not mean something where there are three boxes: ‘male’, ‘female’ and ‘other.’ Though the six to eight heavy machinery laying foundation 6-20 feet from me for 10-12 hours a day and computer problems have slowed me down, to the point of very ill and supported by Linda, I will be talking about the lie we believe, the lie of ‘normal.’ Over this and other topic specific posts. It was the reaction from the intersex issue earlier that encouraged me to start with a 'Basic' intro.

Survey after survey, do you know the first thing that parents feel when told their baby has ambiguous genitalia or an intersex condition? Shame. Shame and ‘what did I do wrong?’ That also happens to be the SAME feeling that parents with babies who have large wine birthmarks on their face feel. Does that make that little boy or girl an ‘other’? Not a boy? Not a girl? Because of a birthmark? Sure, it is different: it doesn’t involve those words: the one we get all hyper about, particularly in the USA: SEX.

First, don’t use the term Hermaphrodite. Sure, it is a ‘historically medical’ term (as are SO MANY offense terms). But the same ‘historically medical’ people who made and used the terms like Pliny the Elder also said that the only cure for a headache was tying fox testicles around your forehead (People with Migraines might be so desperate to try but trust me, or trust Stephen Fry, it doesn’t work!). So unless you feel confident enough in medicine to separate the four humours from the anatomy of melancholy and can explain the use of SRY in genitalia development, please don’t use terms that those with intersex disorders (including the 1 in 500 men with klinefelter syndrome) find hurtful. That’s why clinically now they are called DSD (Disorders of Sexual Development: which to many people SOUND like the person has some puberty problem or has become a peeper, hence not really loved by many intersex individuals). It is called DSD because most conditions stem from that time at 17 weeks when the sexual development occurs (Not gender identity, but the actual 'bits').

Okay, if you, a loved one, a friend have a white spot, if you have webbing in your toes, if you have an extra nipple or like me a few extra ribs, then you have some anomalies in your 46 (or 45 or 47) chromosomes. So do people who are born with ambiguous genitalia, or people who like those with diabetes who have problems with insulin, have problems with androgen, or estrogen. Except androgen and estrogen can make you stand out as different during puberty, when you least WANT to be different that way. Of course, it also happens in male and female menopause, but we don’t email or tell all the women taking hormone supplements due to early onset or post menopause that, “It’s okay, I still try to think of you as a woman.” No more than we tell a guy with diabetes, “Don’t worry, It doesn’t matter to me...just, um, you know, use the stall shower after the game...cause, I don’t mind that you’re different but…”

This may appear to be me going wonky, but please, yes, have questions, have opinions but if you want to reassure me, question me, or others about intersex conditions, please, please put it in the comments. Why? Because so few people EVER talk about this that I don’t want a bunch of whispers in emails. When someone does a search because they just got some doctor’s report and have to wait 2-6 weeks for tests, I want them to find the questions, the things people might have already said to them in comments, and dealt with. I’m letting you know, if you email about it when I post like this, I WILL put your question/statements in the comments.


Because I wrote that three million women in the USA have just those 4 intersex conditions, I didn’t count the dozen plus other ones, and yet, I got a lot of assumption about one person: me. Yeah, because of those anomalies in my 46 (or 45, or 47) chromosomes, they are doing a genetic and chromosome work-up and a doctor seems SURE that I have condition X, another person thinks I have condition Q which is actually rare enough not to be listed in the intersex/DSD conditions (different conditions means different parts of chomosome code are missing, which means you can be prone to heart, lung or other conditions). But either way, if I have Huntington’s or other diseases found from hereditary (remember that doctor who was convinced I was inbred, my mother was not amused when I let her know my medical records sort of now indicate that her sex partner was granddad or another close relative is my ‘real’ genetic father) or other chromosomal issues, maybe it will help. For the most part, the diseases found cannot be treated, or some can, but not in Canada unless you are in Toronto. And since in this city people can’t get diagnosed for cancer because they won’t actually give them an X-ray, or follow up on blood work, I am not seeing stem cell treatment in my future oddly. But I am going to talk about it.

If you live in a city, if you know over 1000 people, including bank tellers, store clerks, managers, students, people in your high school then you already know, several people with Intersex/DSD conditions. That is what I said before and I say it again, no, not on the internet, face to face. If you feel you ‘know’ someone who has an intersex condition over the internet, I am telling you that you ‘know’ about 4-5 people minimum who have a DSD/intersex condition in your regular daily, monthly life: face to face. They just never told you. And maybe we should all ask ourselves why?

When people transition their sex to their gender identity as an adult, it is hard not to notice, not to hear about it. Because people talk, and look and have think because they saw it on a TV show they know the score. “Not a real woman”, we hear and see the intolerance of those around them. What do you think those whose earliest memories are of a gaggle of doctors examining, measuring, re-examening their genitalia while making comments to the student doctors who were watching are feeling?What do you think those men and women whose early memories are those of surgeries they were told to lie about to class mates, and were told, ‘Kept it secret’, are thinking?

Even the most basic intolences I have heard: sitting next to Linda, my spouse with a German mother, about how ‘Those Germans are heartless bastards to the last one.”, heard how “lesbians just need a good.. (arm pump)..ya know” or "all them short haired lesbians want to be men". I have been treated and all but told that being disabled and being on welfare was the same thing (and the same type of people..ya know). That drug users are a drain on society (I know a few transit workers who are steady heroin users), that people who take X should be locked up (I tell them I take drug X – “Oh, but you’re a different story”). I am pretty bold, but I didn't stop enough of that crap. I too ended up with a head full of baggage; actually I think I have an whole train of baggage cars! So imagine, in Cardiff, when an eight year old girl with leukemia finally had her hair grown back long enough to go to school and the first day her head is set on fire by her fellow schoolmates (true story), how much attention do you want to draw to yourself?

In the UK, there is anti-bullying day, and the Prime Minister wore a patch. Is there an anti-bullying day here? What kind of rape is it when classmates, children viscously open about their stereotypes, want a look and force you down to rip off clothes and check your groin? And when adults, who have the same stereotypes, just a little more restraint, just want to whisper about it, or treat a person different?

The responses regarding a few paragraphs of about intersex and that, yes, I am being tested for one, depressed me to the point that my health deteriorated because of what people thought, in a post about me having a fever. No one seem to care about the fever. But over a dozen emails, from people I had not even had an email before to let me know their ideas on a topic they knew next to nothing about. We keep the silence, and we enforce the silence.

Linda said not to write on it again, because of the pain it put me through. She did want to have to pick up the pieces, she doesn't want to see me hurt. She remembers the fragility.

I lost my will. But I'm back.
And maybe I will lose some readers, or be hurt or burned again, but I will talk about this, about FSD, about all the things women are supposed to enforce the silence about. And convince others to STOP the silence about it: Neither I nor the women who get clothes from the men’s section (or the men who get clothes from the women’s section - go androgyny, YUM! Okay, terrible clothes for an archer but he is looking good!) want to be a the opposite gender (at least that is the majority – male cross dressing is primarily a heterosexual ritual for reasons I am still trying to figure out – 10% of hetero men do it regularly, (two dudes, deal with it)
almost ALL have done it at least once for some reason - whether sober or otherwise). As for women and crossdressing: we steal everything that might make us look good – your shirt is our sleepshirt, your sweater…MINE NOW! We are crows, if it is shiny, it is mine, if it smells good, it is mine! Mens socks are thicker…mine! I used to buy my shoes in London at a store for gay guys, because it had FAR better selection in better colours (pink, powder blue, a velvet burgandy) for larger feet and wider feet. Hey guys: we saw your tights and high heels in the 18th century to make your ankles look svelte and we have been wearing them ever since, same with the eyeliner we stole in Egypt. And the corsets to keep a gentleman slim in 1895-1910 have become the underlining of today’s goth girl corsets.

Sorry, clothes…got distracted.

Okay, research done, articles being written, now time for kittens and cats. Oh geez, out of room kinda. Um, I hope more tomorrow if the fever isn’t back, but this here is Oreo, a black and white cute little cat that likes me, hates all other cats and isn’t too fond of Linda. Also my purple Skelanimal top which I like a lot because it helps show off my…um, kittens? Oh, the reason that Oreo isn’t fond of anyone else is a territory issue. You see, Oreo walked into my lap and made herself comfortable. She rode everywhere with me, the only problem is that every time I got her off, she would just figure a way to step back on as I wheeled past something. When she got on the first time I said, “Oh, do you want me to be your owner?”

As you can see by the look she is giving Linda, I got that relationship wrong, as she is saying, “This is MY property, back off!” But still a very good lap cat and 10 years old, though she looks much younger.

There were also two twins, the one in black is the dominant one, female and is bigger (and a bit of a bully). They need to be adopted together. Alex, the boy, was very, very cute and inquisitive, but we could only see him while throwing treats to the back of the area. Here Alex is very interested in the Camera.
Very, very interested.
Okay, that was your ‘AWWW!” moment. Back tomorrow with some lighter stuff I hope. With all the noise, earth shaking and heavy equipment so close it is hard to maintain my health and my state of mind.

For those of us who have hard to diagnose diseases, how often has the ego of the doctor been of more importance than our well being? How often has what they ‘feel’ been our commands? Now try to imagine living 15 years ago, pre-google (yes, I know, PRE-google?), and before genetic testing was available and imagine what it would be like to see those doctors 2 hours after the birth of your child. Imagine being a child and having five or more of those doctors telling you what to do, what to think, how to act, and how often to come and be touched by them, from earliest memory. Imagine pictures of you, your genitals being passed around at conferences, being taken against your will, at four, at six, at 12. Never get between a doctor and his ego, his paper, his publication, his test theory.

Without diversity, there would be no wonder in the universe.
I'll let you in on a secret: Women fart. Linda doesn’t of course, but OTHER women. Women can have PMS so bad, or mood swings from it so violent they scared me (how can a woman that small scream so much!?). And women can miss a period while hetero partner is away without it being a virgin birth. Oh yeah, and some of us women have little mustaches, and some of us have fuzz, and some of us have lots and lots of black hair all over, and big sideburns. And we are still loving and lovable.