Saturday, February 27, 2010

Wheelchair Boxing Round 3: is this tenacious?

Free from the ‘51’ (the 51 days of fever), and the fever and chills from Tuesday, I went to Boxing on Friday. I am thin...in places. I have ribs showing, am sitting on pure pelvic bones but have a pot and little tire and not quite sure how that happens (lying there for 51 days might have something to do with it).

It annoys me.

Things that annoy me get removed. Turn on the vacuum cleaners, and hand me the scissors: time for my home liposuction!

I have pushing myself hard since the fever, trying to get reserves, but working every hour. I have had some problems with high blood pressure and seizures, and the fever make things explode literally. Due to my camera being a ‘smart camera’ which tries to match skin tones, this bruise is about half as dark and just plain disturbing as the picture shows. There is another rupture showing up in the pinky, it starts in the crease and goes up half of the pinky. As you can see with this picture, I bleed every day, expanding territory of this particular bruise, and that is only the part you can see on the skin. When I overheat and blood comes to the surface, it gets gigantic. It seems like my body is playing a game of Risk, and slowly winning territory. This is called subcutaneous bleeding, I think. I did not hit anything, this bruise along with about 30 more visible ones, are just ruptures of my arteries from high, high blood pressure.

This is what dying looks like. I wasn’t going to take pictures of the things we now see, except that people who read the blog are so used to me ‘dying’ that the idea the ride is about over, and going to come to a complete stop, is alien. No, I am not an alien, or a sub-human that just keeps going regardless. I could die today, I already came close. My arms twitch constantly so it is hard to type. There is no ‘after Xmas’, or ‘Next year’ or ‘This Fall’ in the thoughts of Linda and I. Yeah, it might be wonderful, you think, to look worse than an infected junkie, and have the pain of having nails driven into your bones, and just go on like this. But human bodies don’t. They tend to generate what are known as ‘loopbacks’ which is the body saying “Help” but, for someone who can’t feel, only generates TIA inducing spontaneous high blood pressure.

I would love a long term gig but right now, no treatment, no doctor, and a hospital would likely kill me in short order (when they make ASSUMPTIONS, and my body works the opposite, that is a BAD thing), that isn’t happening. Sure, I have to live as if I keep on living, because I am not sitting here waiting to fall over. But I am fighting to get back each freedom in the same way I went to the fencing tournament AFTER I knew it might kill me: I want one more spin on the merry-go-round. I want one more 10K, one more Sakura-con (see Linda on how that is going), and with about 600 more postcards I get 5,000. That’s a good number, right? Yeah, the shop is shutting down, whether I want it to or not.

I am not a Goth, I AM GOTH. And no one is riding shotgun with me.

So, after seeing Sherlock Holmes and a few hours of sleep I went up to boxing. I went up because a) I need to lose that pot before Sakura-con (vanity, vanity!) b) I want to be as elite an athlete as I can be for my condition because I believe that will extend my life – even if that is 1/10 of what my condition was in August or Oct. last year. And c) I really want to go out of this life hitting and fighting DAMMIT! I want to be a wheelchair boxer again.

I managed to show up on ‘do sit ups, push ups and heavy bag until you vomit’ night. All right! We did 12 series of combo’s on the heavy bag before doing tight hitting as fast as you could and then strong blows are hard as you could. I couldn’t type afterward – I just needed to lie down and have body twitching.

When I started I felt FAT, but when I finished I felt better, not just because with eating only one meal a day, but I am on bone in my pelvis. But my arms still seem to work, and I was able to sweat, enough to maybe stop my hair from falling out. Enough to stop the skin peeling off of my face.

Linda said, of those there, I was putting the most into it, but then, I do. Ian held my heavy bag and surveyed the room while I worked on uppercuts, shovel hooks, overhead hooks, and power rights. I knew I would be in pain, since last time I was unable to sleep due to the pain from boxing. This time I managed to get four hours sleep (only to find out that due to working SLOWLY every day, the construction will now continue into Saturday – six days a week, starting TODAY until Xmas). I know that I will never be able to look out my window again. That is what is. I have wall scrolls to watch and DVD’s I play to cover up the construction noise.

The trick of making combination is to totally relax between the combinations, like letting your mind go into strategic mode, so you breath, relax. Then you take the power from the relaxed muscles and accelerate them to culminate into a point in time and space – WHAM, wham, WHAM, and relax with your guard up. It takes a half second to make three hits.

Ian is the right type of temperament for me. I told him, “You are doing 40lb jabs” while I was holding the heavy bag (throwing around boxes of books, the 80 pounds of books versus the 40 becomes memorized). He told me he could barely use his shoulders: jab, jab, jab, jab, jab, jab, jab, cross, power hook. “I did two killer workouts yesterday.” He said, “Why do I hit so hard when I am so tired?” jab, jab, cross, jab, back step, step into hook, triple jab and a rocking cross. He laughs, “Because I like it.”

Afterward I apologized for not coming due to the fever. For Ian, who knows me, it is not a big deal, two of his students, new ones overheard me and one said, “Oh my God! Did you go to the hospital?” Ian and I looked at each other like, “Newbies!” He knows this rocket is pointed toward the sun.

He had parasites from a trip overseas, as is working them out. I told him I will be back regularly I hope as I get ready for Sakura-con and the 10K. “You are the most tenacious human being I have ever met.” He suddenly said to me. I wasn’t sure what to say.

Ian has had about 75 bouts with I think 5 defeats. He came out of retirement in his mid-30’s to do a boxing tournament that required FOUR back to back full on bouts, which means you had to win all four in a row. He was at the final bout when a ref called a holding, and a stop, he lowered his glove, while the other boxer put all his weight behind a hit to his cheek, crushing his cheekbone and pressing his eyeball out. Ian went on to knock out that man and win the tournament. But, he said, it taught him that he was too trusting, and it was time to retire. And he calls ME the most tenacious human being he has ever met? Of all the boxers? Of looking himself in the mirror?

I want to live up to that.
Someone recently sent me an email saying they wrote so that I won’t be lonely. I write because I am lonely.

I want so much for this blog to go back to jaunty and saucy and research and observation of BEFORE, and I hope it will. Because all of that is a part of who I am. But so are the things which no one talks about, that shadow which falls over everything I look at, over everything good in my life. I live because I need to live each day as if I were to keep on living. But I also need to have a part of each day in preparation for dying. Except there isn’t any way to teach me how to do that. Linda has 3 support meetings in the next 10 days. I will meet a therapist for the first time, a meet and greet – they are accessible, so they are only available every three weeks. And what do the living, who observe and writing ‘stages’ know of this. What do they know of having what limited support group die, one after the other.

One told me, “Just because they say you are going to die, doesn’t mean you will.” Dead.

“Morbid wit, I like it.” Dead.

Another taught me how to keep blogging. He was the most obvious, slurred, even on the blog, so we brushed by, as I was full of symptoms and possible conditions, and that he could be me soon, it terrified, and he died soon after.

So boxing and being in pain and watching blood pool from parts of me is easy. Wham, wham WHAM! THAT is nothing. Letting someone in, knowing I won’t be there for them, and seeing them watch me with terrified eyes, how do I do that?

Thursday, February 25, 2010

I see the world outside and apply for a job (circle game!)

I saw the outside world this night and it turns out to be not at all level like the indoors: it has slants. I had forgotten that. It turns out that ALL sidewalks slant one way or another. Annoying! I wheeled myself all the way to the movie theatre which is about maybe .5-.75 of a mile – surely about a kilometer so I am doing my training for the TC 10K which is after Sakura-con. One down and nine to go. Take that!
I have been inside a wee too long. I should have remembered how annoying all the ‘not quite’ curb cuts are (how hard is it to have a cub cut flush with the street? Honestly, the street is right THERE to measure against!). Also steep hills. But I saw the Sakura Blossoms blooming on a street on the way there, I have a cherry blossom leaf on my wheelchair tire.

I went to see the late, late showing of the film Sherlock Holmes, which has been steam-punked. Having read many a rendition of Sherlock Holmes and worked on two papers for the Sherlock society, yet unfinished (you think academics are hard, trying obsessive societies for fact checking) this film was a rather jaunty expedition with ‘she’, the one that got away. Also, an interpretation of Sherlock ‘playing’ the violin (like double bass) that was unique. Hanz Zimmer, who did the soundtrack for Backdraft, did another great job here. Ah, I must finish the papers, one proved he was a woman (as no single men of class could or would interview all the people he did – without chaperone!). While the other, proved that he like all great Golden Age detectives was NOT British due to the fact that he is cunning, intelligent and lies a lot (at this point in time it was seen as ‘not British’ to be intelligent – indeed, many best selling novels have heroes at Cambridge or Oxford coming home to worried parents convincing them that they were NOT studying. The purpose of Oxford? Well, at that time, it was, as Elliot put it in his retrospective work ‘Notes toward the Definition of Culture’ that university was the experience of taste and to bond a common elite culture. How did you know you had this taste? Well, Eliot states: if you have to ask, then you don’t have it). In this film Sherlock boxes when bored, which surely is an ode to Conan Dolye, known as ‘a Sport’ and well known for supporting and engaging in Boxing (and writing about it often). There are, of course, many changes to the holy text, but it is all in good fun and to see a shipyard in action (and what would a steam-punk film be without some sort of Tesla Device?) was worth it.

The countdown to Sakura-Con is 36 days or so. This means I need to choose and order my outfits but ALSO my accessories now (so they arrive in the post in time). I am trying to decide whether to go with purple and black torn leggings and matching arm warmers, skirt, corset, etc or blue and black – ahh the angst of a Wheelchair Goth. I have decided for the SECOND day to go with something simple like this. See, that’s why I need the fan in wishlist (and the hairband). What? Of course, I have to have a different outfit every day (shakes head in bafflement that is even in question).

Surprised I went out today as I was very, very rapidly ill yesterday. I spiked a fever which would be 102, and started bleeding in several areas causing spreading bruises as my heart rate went up to 112-140 and my blood pressure was all over the place. It may have been food poisoning and the fever was me going into heat stroke or the bathroom issues was a reaction to the fever. I don’t know. I do know NOW that most of my daily routines to keep myself healthy are based on data from long ago and it is inaccurate. My blood pressure and heart were crazy every time I tested them for a full day. Nothing like having half of my body going into shock and shivering while the other half is purple and green with odd blood pools under the skin to indicate problems.

I seem to be losing my hands and arms, or rather, anytime I use my hands, in particular, or my forearms, my T4-C1 sections go ballistic in heat, which in turn superheats my blood to the brain, and seizure or fever. My entire body can have goosebumps with an air conditioner on me in a tank top but try and type (or use my wings) and my T’s and C’s immediately heat up. A guess, based on Neurology journals is that much as demyelinating nerves in MS will physically increase the spinal cord signal channel, it seems that my attempts to ‘lock’ in functions, by doing them daily for several hours has worked, and failed. The signal channel is larger, neurologists theorize, because as signals don’t get through, more and more are sent. Because I spend hours working to speed up and maintain function, virtually ALL signal channels must be used, and so I maintain function at the cost of a fever. I also, in my limbs have lost use of several muscles. I probably lost another the other day, as it woke me in a full throated scream, with pain that was new to me. The next day weaker. Today, dead.

That said, I worked a couple hours to try and get a job today, playing the giant circle game. I have plotted how if I work 4 hours in a visitor center, spend 36 hours in bed recovering I can work 4 hours again and return to the workplace! Brill, no? I work in a Visitor Center as it will have AIR CONDITIONING in the summer and I will be part of a work force and see humans again. I REALLY need to talk to humans more.....and plushies far less than I do now! Plus I will work in Port Angeles, so that I have a chance at employment under ADA accommodation.

The 'circle game' is when you talk to person A, they say to talk to B, B says talk to C, C says talk to A and B. So I talk to Human Resource who lets me know that jobs for the visitor center appear in the National Database now. I wait and can’t see any for weeks so I talk to the head of the Visitor Center and it seems one of the days or weeks I was watching I missed it, as the jobs were advertised and now closed. BUT those would have been for 40 hour a week jobs. There are jobs for 4 and 8 hour a week but those are Internships, Volunteer or a program of locals who come and do jobs. I have talked to the visitor’s center head and he has no problem in theory with me working and wants to have a face to face before summer. Only HE doesn’t run the Intern, etc programs, as that is another person. But, as a line supervisor, he can only advise me to apply to this other person through a DIFFERENT webpage for non-paying jobs. Whew. Problem is, I can’t apply for a 40 hour a week job, and then say, ‘oh, and my accommodation for disability is….I need to work 8 hours’. He agrees but what can you do. Also, I can’t disclose medically confidential info to him as a line supervisor. So I call the head of Human Resources, who can’t quite get her head around someone like me working. But tells me that I do not apply on the website but send in a resume along with a Special A exemption appointment form. This means I am appointed to my point and accommodated. Okay, who does that. Oh the supervisor. Circle game.
“Um, I just talked to the supervisor and he was sure it was through the webpage, which is why I need to talk to you.”

Turns out that I need to apply for a job, without saying why I need any accommodation due to disability, then get accepted and THEN human resources can accommodate me. EXCEPT, since I have a severe disability, I am appointed, and not done through regular recruitment as a policy for this national agency. Okay, who does the appointing? Who decides? Um, no one knows. It is done at a local level but, the Human Resource person hasn’t heard of it being done and the Visitor Center person isn’t aware of it. By this time, I am loved sort of, I am affable, and it is two hours of straight talking on the phone so I have a seizure.

As I will point out (when I can talk again and get the job), that surely the agency hires people with epilepsy, and people with MS, and people in wheelchairs, and people with fatigue or respiratory problems. So add that all together with a large glob of autonomic failure, heart problems and vision loss and you have me (don’t worry, I carry an eye patch in my backpack!).

Cunning plan. So, so much effort. AB people just don’t have the slightest idea of how much effort is involved in the most basic of functions. I can sit still and talk on my oxygen with breaks, and my medical drinks. That is a visitor center. But to do a ‘meet and greet’ for a job that pays nothing, and will probably cost me three days of effort and recover FOR the ‘meet and greet’. Sigh.

Tomorrow, or rather later today, I hope to go boxing, or shadow boxing to sweat. I have the plan: fever free, then exercise, then 10K. No, I’m not getting better, I’m getting weaker. But I am going to be the fittest I can be, with the greatest reserves. And I got to see outside.

Monday, February 22, 2010

Three new posts, an Anniversary and learning to fly sitting down

Three years ago I came back from the fencing competition where I collapsed. About today I started using the wheelchair full time. If I make it to May it will be the anniversary of when the people working on me thought I was going to die. I was more active back then, and so, ignoring that all the speed limit signs in my body had been removed, I ripped down hills and switchback corners. So when I finally said, “I don’t feel good” – Instead of fainting, I would just, stop breathing. These days, I still go past my limits, but in different ways. I wrote about it a bit in my post on the postcard project.
Plus the post has a kick-ass typewriter.

Right now, I focus on the short term goals. Getting to tomorrow. And getting to Sakura-con, to do the Times Colonist 10K and get to the start line. To get to the finish line. To get to the day AFTER the TC 10K. Then there is summer. Yeah, Linda is unemployed and applying.

She told me she has written a blog post on Sakura-Con on ‘A Girl’s Gotta Fly’ and she would really like you to read it. It is here. I haven’t read it. She just said that if you are confused the ‘paypal’ button is on the er…..right a part way down. I assume that is my right.

All I know is that I am selling books and DVD’s and stuff. And I am fever free (except for 4 hours) for a week now. Next goal: exercise – I am going back to boxing and badminton.

I won a Kodak film contest division about ‘Life in a Wheelchair’, a division not about work or family but the rest. The prize came in a big box. It is unopened.

The winner was the picture titled, Fly or Fall. I said that for me, every wheelchair user has to work out for themselves how they will see and how they approach life from a wheelchair.

For me, it is always flying. When I fall, I drag myself. Even having to rest every couple pushes going uphill it is flying, because I am out there trying. What is impossible? That which is never tried. Getting up the hill isn’t impossible, it just is damn hard some days. Yeah, there are lots of things that are impossible but if I had to do it all over again...I would have ordered the double thick titanium axles. Why NOT fly. Okay, it takes more risk, more energy, more planning, and has a higher probably of something interesting happening (which might or might not involve hospitalization). So where is the down side?

I am not wheelchair bound: I am learning how to fly sitting down.

Friday, February 19, 2010

History not always what we want: BC, the Olympics and my bowels

The good news is that my fever has broken, five days and counting! The somewhat bad news is that I have not been boxing and got to read the exciting notes from the teleconference on ‘bowel maintenance.’ The most unusual suggestion was a Carbon Dioxide enema, you literally put a CO2 canister at your anus, and um, blow. It is only recommended for those who have high level breaks as the bloating is significant, and like the saying: when the trumpet sounds, all come out!

OW! It hurts me to think about. The presenter seem confused that it was not marketed or sold to the SCI community but to the gay community, hence a difficulty getting a supplier. (eye roll)

As for me, I have increased my water intake to 2 liters a day, and that with a mild daily irritant and grape juice does the deed. It is hard enough to manage to find time and energy to eat meals but I don’t dare get dehydrated.

Great Jumping Goat of Ghenna! Is that what the blog has been reduced to: my bowel reports! I know I wanted to narrate my life and disease but if I find the whole ‘regimen with a gun at my head’ tiresome, how worse to listen to it! Here, join Zheleznovodsk, Russia’s Bronze monument to the enema, and the slogan, “Let’s beat constipation…”

So, turn up the juice…let’s talk um…..clean ceilings.

A friend visited over a weekend and helped us with the physical things I could not do, helped Linda with that and one was cleaning the bathroom, including bleaching the ceilings. Here they are in all the glory! Linda went around happy for several days in a time when things seemed very much out of control going, “Clean Ceilings.” Also, though hard work (mostly our Linda and our friend), we found that we have a living room again, one I can wheel in and out of. And in a promo offer we are watching the Olympics, at times, hooked up to basic cable. It will go when the Olympics do, as I can see that commercials have not changed for the better in the last 10 years. It actually makes the dog food commercial of the little chuck wagon going around on the floor seem quite clever (that usually showed up during Bonanza!). I promised Linda that we would watch…..ice skating. No, no, not the speed or endurance skating I WANTED to watch but the figure skating. We saw the men’s routines and the narration was well, surreal. There is a guy who is obviously gay (OBVIOUSLY CAMP also like blowing kissing and giving little hand at shoulder finger waggle waves) in a country where it is LEGAL to marry so why not come out and be GAY. He is wearing a boa, fur, satin and sparkles and the Television commentators are talking like this is a boxing match and how he has come here to ‘stomp’ skater X and how ‘I hear he has been doing some ‘trash talking’ and today we will see if he has brought his game face.’ – what? This isn’t pro-wrestling! Don't mistake me, I WANT gay and out men and women - what is the point of having the all the rights and protections then having the 'hetero games'. He did quite well, blew kisses to his mom, cried and will probably win a medal. It is just annoying that we don’t hear about his partner or future plans but how he will ‘shove those skates in the face of his rival’. Wha?
Apparently this guy, who pinged my gaydar is not gay or has a 'beard' (is dating a female), he just likes to crossdress, like so many North American males (over 10% heterosexuals do it regularly!). Not gay, though he has feather gloves which he says 'match the music' - the music, 'the Firebird' is a typical ice skating piece for the female ice skaters, a first Olympic use for men in medal competition I think. Oh, a classic case of the dudes raiding our closet again. Plus he is the tallest ice skater in the Olympics, so you think that outfit or gloves are going to fit again when he has stretched them out? Oh wait, he bought this, so that is okay as they are going into some US Hall of Fame probably. Also probably next to a sign saying, "We are Americans: we get Gold.... and we are straight!"

I am not proud to be Canadian or from BC. Our commercials show a white only society, or one which lacks the true complexity which exists. We put up the Jason Hunt's Kwagiulth Killer Whale carving with the lighting, having found the right place for it, so that we can enjoy it frequently. That carving is part of BC history and culture, and so is the whole story of how our Christian Nuns and Priests destroyed the Potlatch, burned the carvings and masks. British Columbia history is also how the Grey Nuns built the hospital I was born in.

Despite the crackdown, Jason Hunt’s grandfather was a handful of men who had been taught, in secret, the carvings, as they were done originally, unique to that nation. He taught others at the Royal BC Museum Carving Shed. That the Haida, frequently portrayed in the B.C. commercials, due to famous art, did slave runs each year down the coast of this island is our history too. Jason’s Kwagiulth nation had a treaty: greet, lodge and feed and they don’t get taken as slaves. The Killer whale dance was the dance which welcomed the Haida canoes, the same dance Jason and his brother danced at Potlatches. The revolt of the Haida carvers in the 1930’s against the Christian influence to ‘normalize’ the carving by changing them to 'acceptable', tourist shapes by denying the argillite stone unless traditional carvings were made is BC history. So is Jason’s carving. The image must reflect only the Kwaguilth image and was inspected by his father, as his grandfather inspected his father’s carvings. The wood to make this carving came from Kwagiulth cedar and it represents his skill as a carver, and the continuation of the Kwagiulth art. We are only those who keep the art until the next generation.

B.C. history is complex, and does not show up in a 30 second commercial of white people smiling going, “Hey, Super…Natural….BC!” We are a Province of draft dodgers from Vietnam (and entire island up the main island a bit), of a dying forest industry, of strange leaders (one Premier decided to spend millions giving everyone a bible and lived in a theme park), and ancient beauty. Where else can you travel on a 50 year old ferry and see pods of killer whales, seals, sea lions, or grey whales? I live where I can see an bald eagle fly over me (and do!), and cougars still wander into town (tranq and sent up island!).

My town has the oldest China Town in BC and yet it, along with almost everything was and still is fighting against being wiped out by developers. The workers who tore down the heritage house across the street are now doing drilling and working on digging up the street so I don’t get a lot of sleep. My city has the highest rate of child abuse in the country. We could change it….but we don’t. The Anglican church in the ‘lower town’ opened a homeless shelter in the basement until a lawsuit by the store owners made them close it. the Anglican Cathedral church in the ‘upper town’ has a manse, a school, and refuses to feed the homeless, lest they hang around. It does however have opera society shows for $20 a ticket. We were the route for three gold rushes, we told US Blacks during the civil war to come to this city, then ended up putting them off on the north point of Salt Spring island, until almost all left or died. We were the end port of the Sea/rail journey from the UK for hundreds of thousands of immigrants taking the ships to New Zealand, Australia and South Africa. We were the end of the line for tens of thousands of orphans, including my own grandfather. That is a fraction of BC. The histories of this new and old land are still mixing, and will for some generations to come.

History isn’t always what we want it to be, the fact that store owners and lumber mills made far more than miners ever did in the California or Yukon Gold Rushes isn’t the dream, but it is the reality. Indeed, we have the California gold rush to thank for Instant Coffee. James Folger came to San Francisco to the Gold rush and didn’t dig, he made...instant coffee. Folgers’ Coffee, sold in a brick, was something that could be carried easily over rough terrain and sold for high value when eggs were going for $10 at the mining camps. Folgers also sold tea, it is just the Coffee did better.
They say that North Americans made the worst coffee in the world, constant brew with egg whites thrown in to keep the particles on the bottom of the kettle of your camp or farm coffee. I remember, as a child, friends of my grandfather throwing in the egg shells (mostly because I had an odd habit of eating the egg shells too – and they would tell me to ‘leave some for the coffee’) in the ever going coffee pot. Instant Coffee – is history. I wouldn’t mind seeing a commercial of some guy with a tooth missing holding some camp coffee, throwing in egg shells and pouring this black, brackish liquid and going, “Super…..BC!” – because it is the British Columbia I know.

Today, down in James Bay, there are three coffee houses (two 'independent'), and the beans are fine roasted and from places even I haven’t heard of (Did you know that Juan Valdez and his donkey were actually CREATED by the coffee board so the US would have the slightest idea WHERE coffee came from – Brazil, and who grew it). Brazil figured if Americans knew where the coffee came from they would buy more – it worked. For years, a nosy Swedish woman, Ms. Olsen, advised wives on how to make their husbands happy, “Mountain Grown” – the longest running single ad campaign in history).

Apparently the commercial is 40 years olds, yet that’s the way men and women are SUPPOSED to behave, so says the Olympics (except male ice skaters). Take it from Mrs. Olsen!

Tuesday, February 16, 2010

I did not choose this disease, but it is mine.

This has been the weekend that felt like a gut hit: when you found your school had been turned into an hair-gel warehouse, and your family home is now a set for TV ‘comedy of slum dwellers’ pulling in 26 million viewers. And they haven’t even taken down your posters or your ‘third place pretty miss junior high’ award from the wall. It wasn’t pretty. Linda is sick. I got a fever and wrote the last postcards to post on the floor after I fell over and was too weak to get up (don’t even remember what I wrote so if you get some scrawl, you know what happened).

The Specialist, my last hope for treatment said he WOULD have helped us if only we had seen him 18 months ago….except we did see him 18 months ago….and then he wouldn’t help us. ‘Not my inch’ I went in INDY. Specialist actually said, “Well, you know there is no treatment for your condition…” Well, not the autonomic part. I passed out tonight because my heart stopped. It now has an evening habit, if I breathe, it stops, as I don’t have the strength to breath and have my heart beat at the same time. It is surreal, watching it on ‘the big screen’ I call my heart monitor now – “oh, it’s stopped!” Linda says, while I clutch my chest, old news to me.

Friday Linda and I spent seven to eight hours because with she is the primary care giver and sometimes it is hard not to hate the disease, and also hard not to fuse the disease and the person. It is hard not to feel, when any forgetting causes others pain, that you are failing. I am failing because I cannot remember three days ago, she is failing because the medicine isn’t here, etc.

I decided that I am not actually responsible for getting this disease. I did not buy it, or test drive it, or pick it out at a factory. I can’t remember things. If a person makes a snide or pointed remark about that, then that is their problem, and they need to go somewhere and solve it, like therapy.

I did not know if Linda was going to build walls in her heart, if this was as far as she went or not. It feels to both of us like the big descent. The top of the roller-coaster where there seems no bottom as the car keeps turning further and further towards the ground and then you start to drop. For me, there is no ‘chicken line’ for getting out, there is no closing the eyes, there is only what I call ‘The Fire’ and that is all. And few if any will go the distance, and I know that. It hurts, to be alone, to know the isolation will get worse, but people don't want to see what it looks like when all falls down.

We talked, and expressed fears, and anger, and irritation and I am trying to create multiple weekly respites for Linda, I am going to try to be more positive. She is going to make a place where I can feel safe. And I am not going into a Care Home. Because there is a fantasy that if I go to Home that we can spent the time together as ‘quality time’. Except the same paid people who don’t care for me here will be caring for me there, and for me there is only one thing keeping me going: Survival. And survival in a Care Home would be doing what it takes, and that isn’t sitting on the porch in case Linda drops by so we can have quality time. And what is that? Talk about five years ago when I remembered things.

This IS the time. If we want quality time or better quality, we have ourselves to find it. This, right now, might be as good as it gets. The people who are here, like Linda, get so used to me in pain, and so tired, very tired, that me in pain has no meaning. Linda would run to help someone who twisted an ankle but after several hundred nights of tears running down the sides of my face, or moans, I am just a lump that stops sleep. That is what it is sometimes. Hopefully not all the time.

“The Fire”? It takes you to the limit of what can be survived, both as a human being living it, or someone watching it. And that is FAR beyond what can be stood. What can be borne. At some point you have to turn away, if only a bit, to shield yourself. There is something for each of us that we can’t stand to watch. For most care workers it is ME, in a level 2 seizure (a level 6 would rip muscles, leave bruises, or internal bleeding). And knowing that EVERY single thing will get worse, will stop working, or hurt more, whether it is simple as swallowing (3 days or an IV), or new ways of pain. And there are so many types of pain. At some point, the eyes and heart need a break. For those who care.

Except for me. I am strapped in and will ride the whole way. If I want to survive, not just as a body in a bed, but as Elizabeth, as I AM then I must always turn to face the fire. No matter how hard or impossible, I HAVE to do it.

In the Bible, Daniel , three of his friends are to be thrown into a fire so hot that it kills people who even approach it. It is made because the king made a gold image of himself and only three would not worship the king every time he felt like it. Shadrack, an ex-prince of Israel, tied like cordwood faced Nebuchadnezzar and told him that even if their god did not save them, it changed nothing, and they would not worship him. The king in a rage had them thrown into the fire, so hot that the soldiers which threw them in fell down dead.

Weird story right? But for me, it means so much because Shadrack said he COULD be saved, but did not expect it. Nor did how he feel change, or how he choose change regardless. He would not do whatever someone who bullied and threatened wanted.

I never wanted to have Autoimmune Disease Autonomic Failure and Peripherial Neuropathy with a Seizure disorder. I didn’t ask for it. And yet, unless there was a way to stop or cure it, I would not give it up. There is no way I would ask for another to carry this, if giving it up meant that some other person, some other statistic got what I have already lived. Even though I pray, I beg, (at times) for death, for not waking up from sleep, or a seizure, for a massive stroke, but then I work full time on surviving again. It is MY path. I will not accept that I deserve it, or that it is my fault.

In a world where ‘someone must be responsible’ that is so ‘wrong’. I do not deserve this disease. You do not deserve your disease. I will do everything I can to improve my quality of life but I will not tolerate another to mock or abuse me or another because of a disability and disease I or they had no control over. Yet, this is where I am. And while I could have been saved, I likely will not. So now it is time to face the Fire.

The Fire means that my ‘right now’ may get five or 10 times worse. On my 1-10 scale, for almost all, my 2 is your 15. It is your worst fear, going on for days, then weeks, then months. Why do you think I have guys who hit my head for 9 minutes in boxing and LAUGH while it is going on?

Even what I can’t feel hurts. The bone hurts, the bone marrow hurts, the muscles ache, they scream, they explode like a strike of lightning and that is just one of the over 200 bones in the body. Does my pelvis hurt? Yes. Does my horsehair nerves hurt? Yes. Does my FACE hurt? Yes. That is just life.

The worse things get, the less I can get out, the less I can have fun – Oh I tried to go to see the squirrels twice recently, but it was a disaster, the less people want to watch. But I will keep trying. Always trying, always striving to be more, to be MORE. To grin more. To watch me crawl across 50 feet of broken glass with a grin between the other expressions, the blood coming out my mouth, it would make people ill. I spat out the blood this morning from a couple bad ones last night. It is what isn’t filmed or photographed. And it will get worse.

I am lucky. Linda and I have made a pact. I don’t know how much longer I can keep going, or what it will look like, but I will keep breathing as and when I can. Orwell said in 1984 that "In the face of pain there are no heroes." I don’t believe that. I believe that hundreds to thousands of homes, behind the veil that we as a society pull over the sick, dying and disabled, that there are plenty of heroes. I watch the Olympics and I envy them, knowing the hours of practice at a sport they love. People think they are heroes, doing what they love? I think of those who competed while injured and that is hard, and yeah, inspires me on a bad day, but that was just a day or two or a while, but some people, they face the pain and go on for months, years. Orwell could not imagine a world where someone would face the pain and chose it anyway, and then do MORE.

‘Enter the Hero’ says one of my favorite characters, Peco, in a film called Ping Pong (nominated for 8 Academy Awards). He says it every time he enters the competition in Ping Pong, only he has natural skill but is lazy, and loses. And then he pouts….and throws things. And some point, having dropped out, almost, he starts again, and trains, and trains. Meanwhile, his friend, nicknamed ‘Smile’ as he never smiles, and has no natural skill, just pure hard work, starts winning. Smile kind of hates Ping Pong but likes friendship, and at the final competition sits in the stairwell, while Peco has worked his way back into the quarterfinals.

“Do you believe in Heroes?” Smile asks his coach. Who tells him no, just hard work.

Smile says, as he listens to the crowd, cheering Peco win to the next level, “I’ve been waiting for you.” Sometimes it is enough to be a hero to just one person.

When things are bad, very, very bad, and all I can feel is a hand, or smell something, or see white, I go on, and try to think of a joke, between the pain. I will hear myself scream and wonder why there are so many ways to hurt and not near enough to orgasm. Ha. See, I did it. To be gone for a time, to come in, dopsy in my face, in INDY and have someone, without hesitation say, “Good to see you” and grip my hand, it is, something that is valuable beyond words.

I work so that I may be ready, to be the arm, the voice, the person who reaches out when there is nothing left to hold. I work so that I am that again with Linda.

“Enter the Hero”

Friday, February 12, 2010

Linda says, "No thong day this year", but let's hang anyway! Sakura-con (and stuff)

Beware: I have been maudlin. I have held my hand to my brow and sighed. I blame the Victorian Fiction I have read, yes books, full of all sorts of words.

Today, I decided that having spent my first two decades linking ‘dressing up’ with “Corsage” instead of ‘Corset’ IS the definition of a tragic life (don't worry, lots of starving and sleeping on floors but still, 'Corsage' a 'yes', but 'Corset' only a puzzled look - it torques the heart and makes me want to start a telethon!) These books make my brain buzz, mostly with, “You HAVE to get better Elizabeth and write more books!” So many good ideas with failed potential, alas. I don’t get outside, I am rather chained to my bed these days. Linda thinks we should try having me actually SEE the sun perhaps once a week or so. If the sun would co-operate.

I am awake. I changed the HTML on Screw Bronze, or tried (to make it easier to read with bigger pictures).

I am fever free. And have been for 36 hours. Yes, I wrote that fever free.

I sent out, er, about 100 postcards, um, recently so many people should get one soon. I was a little behind and now I am caught up….almost. But between that, and weeks of doing odd impressions of a fish out of water on the floor and lying in my bed doing the roller-coaster of a heart gone funky I am sort of mixed up on days/months stuff. I have electric heart autonomic failure so when I get fatigued the heart goes…..well, on the monitor there are beats and beats and then nothing and I look at Linda and she looks at me and we look at the monitor and wait to see if the heart will beat again before I pass out. That is the ‘clank, clank, clank’ of the roller-coaster car pulled up the slope. Then after a few beats it will just start beating about 4-10 beats a second, and if it goes on for more than a second or two Linda goes, “Whoa” and that is the big downhill. It makes you a little sick feeling and one arm turns purple. So I have been under watch and only getting computer access when I can.
Still, decided, I am not going to die, I am going to live and I am going to meet people at Sakura-Con.

The Pre-Registration for Sakura-Con closes on March 3rd, and through the sale of several items I plan to pay for registration of myself, Linda and Cheryl. Sakura-Con goes on in Downtown Seattle from April 2nd-4th and the pre-registration of $50 is for all three days. Or you can pay for a single day. Youth 12-6 are 50% off and those under age 6 are free. There are special planes which bring Japanese fans to the Convention. I know because we flew to Japan with many of Japanese from the Convention.

Sakura-Con, not only is one of the ‘Big Three’ Cons, but the first big Con of the season, so best time to get the goodies from the vendors who just travel from Con to Con. Plus the creators of Sakura-con are fans who decided to make the ultimate fan based experience. So there is everything from ‘Cosplay Chess’, to rooms full of computers and game stations linked to play games together, dance machines (all free – you paid for it with the entry free), it takes over every room of the Hilton and Hyatt Seattle and the displays of Japanese culture, martial arts, to hobbies, as well as films not available in the US, animation not released here yet, Masquerade Ball and 3 days of 24 hour programming. Seriously, one reason NOT to stay at the Hilton is to avoid watching an Anime Series through the night instead of sleeping, and then getting to the goth loli fashion show, before the judo display or go and see the ‘Best Cosplay Costume Costume?’ There are autograph sessions with the dozen guests, and multiple guest bands. Last year, I thought someone was Cosplaying the technical punk with the red surgical masks with a health X on it, and it turned out to be the band checking out the guest Japanese Band checking out the exhibitors hall. There is full accommodation regarding disability.

I was going to post this in the first weeks of Jan but something happened, I think it was an injury and then Linda’s job and the fever so not quite the 4 months I wanted. But still, about 50 days, and if you want to book a hotel at the Con Rates, you have until March 3rd to make a reservation (which requires no deposit). Linda, Cheryl and I will all be going (Linda did not go last year but wants to go this year). Linda is saving for ‘contingency’, what ever that is (I think it is a name for ‘rent’) and Cheryl, um, well Cheryl is my sister and good friend but has blown all her money on cocaine (no she didn’t! Say no to drugs, because one day...one day...it will be YOUR turn to ‘treat’). I can’t pay for the hotel room (we got a one room with fridge last year) or the gas, but I will be there. Even if Linda has already said that bikini day is OUT and, unlike last year there, will be NO thong day (did I post that picture on the web?). Bummer. But still if you want to drive up or down or over for one of the days, or come to the Con, let’s hang, okay?

Big problem, I have to come up with NEW outfits for this year. I have already been working out. Turns out that Cosplay girl from last year in the divine pink dress was Cos-playing from Black Butler when young male Lord must cross-dress at a ball to find a killer (and is seduced, ‘my little robin’). So the girls were looking fab, cross-dressing as a boy cross-dressed as a young noble lady (you get used to it, honest!). Oh, and there is a room where you have to get a ‘safety tag’ on any weapons you bring, and promise not to attack any mortal enemies of the person you are cosplaying. And this year, I WILL behave myself, honest.
The ‘Guests’ from last year ranged from Abe who did Serial Angel Lain (and did signings), to the guys from Penny Arcade, the organizers keep signing up guest appearances until the last week. So from three days hard core gaming to Otaku heaven, or just hang with the Girl’s Gotta Fly gang. I am not boring in person, honest.

Stuck in the bed, I have been watching Lost season um…. something. All I know is that I REALLY want to meet the guys the Dharma Project got to subtract building half the stuff. Seriously, how was that work order written up? All I know that if I watch an entire season of a TV show, and can’t remember to tell you what matters except that there was addictively bad writing, I am the one who LOST (time). I hate, HATE shows where there is a bad guy, and everyone KNOWS they are a bad guy, that they lie all the time, and nice people die, and they aren’t killed, and they get captured and lie again, and more nice people die, and they STILL don’t get killed. See, people like that don’t actually last in a ‘lost’ situation but in government or in big corporations where they can be weasels. The reason they don’t last in the wild is because I or someone like me gets off the plane.
In my life I have met some, what in Britain would be called ‘Hard Men’ and one “Hard” Woman. Hard men don’t say, “You shouldn’t have done that.” They look at the situation before and they say, “Don’t do that.” They tend not to talk a lot, and because they don’t have a lot of guns (Scotland is the highest per capita knife killing city in Europe) if you do it then they just throw you out the window. Particularly when you live on the ninth floor, and they don’t check out the window or watch, they throw, then just pour a drink and sit down.

People who pour gasoline or light fires and set things on fire and put them through your mail box, those aren’t ‘Hard Men’ – those are drunks, who used to go after gays after closing. Bigots who used to break into our car just to sit inside and smoke and smash things, just because we loved each other. But I am not a ‘Hard’ woman, except the part of me which is, which is why we tell workers not to wake me up in arms reach. I mean, when Cheryl talks about having to work to pry my hand off her throat and I am not even awake, how embarrassing! But still, it is a nice island and I think I could have a lot of fun going around and searching stuff out. And let the British SAS guy three rows back take care of stuff. My friend was in Guards (like the Marines), and they were charged with guarding planes against the SAS. They KNEW the SAS was coming, it was a two day exercise and they had every plane and spotlight positioned, and every guard detail so NO ONE could get on that airfield much less near the planes. After a day, they called, ‘Exercise Over’ – and every single plane had an explosive hidden in it somewhere, and no one had found one or seen the SAS, never saw them after either. They come, they do the job and they go. And they at least have an order, many ‘Hard Men’ don’t.

Okay, that just isn’t cheerful. I think that means my pain meds are wearing off. Time to go soon.

Today, Linda brought back the post of a couple weeks (the boat was being repainted), and I have post. I was in a little world where I slowly drowning. There are times when, trapped in a bubble of pain or fatigue, or so much going so wrong it is hard to believe that tomorrow matters, that the next minute matters. That’s why I explained to Linda that instead of gifts this week, I needed to send as many postcards as possible. Because I could send six gifts or send fifty, or seventy, or more postcards as gifts - I chose the little bit for more people. Drown no more. Because I know from each letter I get that even though I can’t see you, a family of people appear around me, a community as I read about the action of this person’s cat or that person at school: Thank you for every postcard, every letter, every post, every communication. I have been trying to think of how to be ‘kind’, how to be ‘fun’ and someone people would like to get to know. I have been trying to think of how to be a good friend. And consistency is part of that. If you haven’t heard from me, I would like to hear from you (try to remember, God used my brain for a hockey puck so I have some memory issues). Or we could make memories and pictures at Sakura-Con?