Friday, January 30, 2009

A type of hero: a brush with greatness.

I think many people as they are children, as they grow up, pretending at heroes, or reading about heroes in comics decides they want to BE a hero. I think of the story of one woman who had heard so much about Abraham Lincoln and admired him that when she was finally shown him close up pass by the woman said, “Well, he’s not much to look at is he?”

There are different types of heroes. Yes, there are those who train to go into burning buildings, who we call upon in times of need, who are there for our medical and other emergencies. That is one type of hero. I have to admit I was attracted to the Welsh police for if not for the stupid hats the women are required to wear.

Then there are the types of heroes that change lives in quiet ways, those like David of the Japan Cat Project, like Tammy with her Cat Refuge and Shelter; like the teachers, parents, the pastors, the people who by day to day work make this world a better place. Those who change lives by reaching out, by noticing the quiet child or the acting out child and work to help them instead of label them a problem. These are heroes and a lot of us have memories of a teacher who made a difference, emotional, intellectual, the gift they gave change from person to person but those people are heroes too.

Someone today said that often people choose the easy answer over the complex one. That’s how we like our heroes, to be Supermen, or people with extraordinary ability. People tend not to think about what someone like Stephen Hawking had to overcome to educate and revolutionize the way we understand our universe.

In the film To Kill a Mocking Bird there is a scene after Atticus has fought hard, fought clearly in a trial against a black man sexually touching a white woman. The courtroom is empty except for the gallery where his two children young female Scout and her older brother Jem are with the black community. “Get up,” one man tells Scout, and she looks at him in puzzlement, and he just says, “Your father is coming.” And as Atticus walked out of the courtroom, empty but for the gallery where every person rose to stand as Atticus passed by. He was a man who spoke for those who were denied a voice; a person who would not relent or compromise himself to public opinion, a person who gave it all, even when the outcome was predetermined from the onset. He was a hero. A rare and special type of hero, and for once, while still living, he was recognized as such. He, for a time, wore the cloak of greatness.

I knew when I read that book and saw that film, what kind of hero I wanted to be. The hard kind. Don’t mistake me, the people who do all those things, day after day for 10 years and change the world, they are heroes, unacknowledged heroes. But to act, because you know it is right. Not because you believe it is right, but because you KNOW it is right, and everyone else knows it too, but no one else will act, and you do. That is hard. That is greatness.

I know the feeling because there is total terror inside. Because you have no idea what will happen next, and that is terrifying. And yet you still have to act. Perhaps, probably there will be violence against you, perhaps, probably you will be hated, spurned, rejected.

When I was a child and I was being hit, and cut, and tortured and raped, I waited, I BELIEVED that someone would come. That a hero would come and I would be saved. No one came. I have ached looking out over the city to be the person to break down the door and save the girl or boy who is lying there thinking the same thing. They have been told they will be protected, or that God is watching over them, or if there is trouble the police will come and yet no one comes.When I started to talk about my sexual abuse experiences, I talked to my therapist/counselor about talking about it, and I was warned, told that I could be physically attacked. I was told that it is not uncommon for mothers to try to shut up the voice that is saying what they don’t want to hear so badly that they try to strangle the person. That the family would rather believe the person crazy than it is the truth. That idea is EASY, the truth is complex and difficult. But for every man or woman who writes, or speaks, or publishes about this; 5, 10, 100, 1,000 – I don’t know how many children won’t have to lie there begging inside for a hero to come. That’s because one already stood up; they took the abuse for talking about it and the anger from the family and society about this taboo subject so that the world would change. They speak for themselves but also for those who have no voice. They speak to give fear and pause to those who would sexually exploit or rape, that what they do in darkness will be examined in the light.

Talking or writing about it gives you panic attacks; it makes you feel like vomiting as you do it (at least it does me). And when you realize that the people you are talking about would rather kill you than hear you it is terrifying. But it isn’t really for them. And yes, the parents, the protectors often would rather hurt you, any way they can, from abandonment, to gossip, to verbal and physical attacks in order to just SHUT YOU UP. There is ALWAYS a reason for ‘not now’ or to not talk about it. What reason is there for the children who lie tonight praying for a hero? What is so important, what reputation, or unpleasant, or social taboo subject is so important that a person really has a valid reason if 100 of them live without that hell, if 50 could, if 10 could, if 5 could, if just one life could be changed?But to speak, to write, to change the world, until there are no children or others to need to wait for a hero to come and save them from that particularly hell, that makes these people are heroes. They save lives. Yet no one will say, “Stand up, SHE/HE is passing.” But heroes all the same.

I have only wanted to live and die in service. To die knowing that the other person was safe. I learned late that simply living the truth, and refusing to give in to demands to shut up about it (whatever ‘it’ happens to be this time) or pretend otherwise can produce the most extreme reactions. Day upon day and month upon month of vicious attacks simply because you are still alive. I am finding that when my care agency threatens to remove all care because I call the police on a worker, that maybe there is another group which has no voice. That people seem to think ‘keeping my job’ is more important than ‘doing my job’ and when not doing the job causes potential injury or suffering to people, a person who speaks about that is hated by all those ‘keeping their job’. A person, like me, who opens up investigations by the government branch against their own care manager DOES feels a bit sick in the stomach. Particularly when the care manager tries four times in one meeting earlier this week to get me put into care; a care center where I would be younger by 50 years than others and bound to my bed and finally UNDER CONTROL. I mean, under care.

I realize that I am not exactly going to be killed leading the charge of the resistance, or saving a drowning child. That is not my fate. That for me now, staying breathing is often the battle. That degenerate diseases and disabilities have their own battles which are unseen, unimagined. Yet, oddly it is here, that I can honestly say I have met heroes. People who, in pain, affected by disease and impairment, go on, regardless and bring purpose and joy to others. It does not diminish the pain, the fatigue, the progression of the symptoms, the medical debt, the thousand little things that drain away energy. No, but they continue on, doing their jobs, or waiting lying in beds, building, planning for the days they emerge again, because they have a heroes spirit. Just because they are trampled, they are crushed under the weight of social alienation and medical conditions beyond bearing, not for months but for YEARS, for DECADES and yet they go on. Sometimes just surviving the day is going on, sometimes preparing just ONE MEAL for another is going on, sometimes they take care of others if only just for a day. Or for some days they have a job, they share part of themselves. They resist the call to give up. I find myself in a company of heroes, in wheelchairs, in braces, in scooters, in beds, in hands covered with bits of superglue.

No, you will not be recognized for your actions. Nor your resistance, your going on. Instead you will pitied, or looked down upon. But I can see who you are. And while you will not likely receive it elsewhere in your life; know this, that inside I am standing because I recognize that a touch of greatness is passing by.

Wednesday, January 28, 2009

Three things the world needs, starting with Victoria Secret lingerie and me

I went to the doctor today after only a few hours sleep (long story but short oxygen capacity), and it turns out, that I am really, really, really, REALLY, REALLY SICK. Wow, I know, could have knocked me down with a feather, well, you can do that most days but you know what I mean. So, I am going to see a whole bunch of specialists or get referred because my health needs to be taken to a whole NEW level of ASS-covering, I mean the care and doctor’s oath and non-malpractice suits. By the way, if anyone in BC wants to sue me for libel of our fine system, please due so, I will be representing myself at the BC supreme court from inside the tin can (‘urn’ Linda says).

So while I am going to see all these specialists, lets instead look at what you really came for: yes, me and lingerie. So, without further ado, here is it, me, rooting away, looking for the tastefully sex depraved look (or was the sex-DEPRIVED look!) at Victoria Secret. I know, you wanted to see me IN the thongs, well, don’t worry, that is coming, this is called: foreplay.

By the way, I am in very bad condition, as in, I can’t do a blog I have been working on for two days, but try again tomorrow, okay. So this is the filler. Because I really am in VERY bad condition: seizure cycles and all sorts of fun stuff, like falling over sitting down and I think there was having my head spin around and pea soup come out, and then crawling up the wall like a spider….no wait, remind me to tell Linda NOT to play the film The Exorcist when I am sick.

So I am taking it easy because while the first thing the world needs is more of me in Victoria Secret (and manga – hint hint – wishlist – hint, hint!), the second thing the world needs more of is me. Yeah, that’s right, meglo-maniacal me! I think this place is better with me in it. It is a personal opinion but one I sit by. Also, when I am dead, we can test it out whether I was right or not. Plus, who else but I gets to wake up in the morning to this as a response to an essay I wrote following my trying to break up Pedophile Rings with the London and Cardiff police:
“This is coming from a homo-SEXUAL. Dear, you've put your sexual desires ahead of morals too. It's like listen to an pot-head lecture about crack addicts. So please, enjoy yourself till Judgment, and stop judging.”

Wow, I love being on a continent where someone can not only condemn me, tell me THEY will be there to judge me but imply that there is nothing wrong with THEM having sex with 8-10 year olds because they are CHRISTIANS (and fundamentalists to boot?). Dude, when someone is smashing a TV with a baseball bat, it isn’t “judging” to say, “That’s bad for the TV.” So when someone does the same sexually to a child, it isn’t judging to say, “Maybe you are sick in the head and need the kind of counseling the Metropolitan London Police can provide!” So that was my wake up mail, sort of an honor in a way, to meet the only person never to masturbate ever (that’s what ‘put your sexual desires ahead’ meant right? Or was it the sex between two legally married people? Or sex at all. I am always confused how the people who are the most AGAINST all the types of sex think the world gets populated anyway?.... it is with lesbians and fertility clinics, that’s how!)

Anyway, we can leave all that behind us and focus on what else the world needs, and that is more Catgirls. I have to love this one because this is Catgirl is either going to first year or getting ready to go to college/Uni – yup, our punk leaning Catgirl who wears the cut off Collar just to make the older Catfolk turn and tut-tut this young Cats today what with the piercings, the painted nails, and the general attitude. Well, it really takes us back (except for people who are AT uni teaching them every day, sorry, they do grow out of it). Look at me, I am almost out of my goth/punk/tramp stage!

So, if I sit REALLY, REALLY still tomorrow, I might be able to get the blog done. You will like it, I assure you. There is nudity! Woot!

Monday, January 26, 2009

Lesbians, catgirls, cabin fever and kittens

First off, a blog post note from Linda about how we are CUT OFF!!!! That’s right, total cabin fever in the winter. Living on an island, no way to post for 10 days and no way to the Hello Kitty store....yes, it was only a matter of time until I snapped and was reduced to this: Making miniature snowgirls.

I have NO idea why the animals, like cute bunnies, hang around me, or off of me, of course it COULD be the warm buns I was carrying (and accidently dropping)? No, I am sure that was a coincidence. These images are from my favorite set of images from the game Snow. I don’t like snow atually (frostbite!), but the girl and the bunnies sure are cute, no?

Okay, so when the boat runs again in 12 days, we are going to be tweaking for entertainment pretty bad, which is why I did an update for everyone of the Wishlist. I focuses on entertainment like some more light romances (the fluff stuff) for Linda and the same sort of manga for me. And a couple TV series on sale that are highly recommended. There is actually a book there that is 450 pages long, so that would be good to help me try to read more each day: I admit it is manga, but hey, if I START with pictures, I will work my way up to words, right? What, what, don't leave, there is also a REAL book, okay it is a TEEN book but those are the best! It is called Memoirs of Teenage Amnesiac, and as a person with large sections of years missing I have strong interest in this book. Naomi (main character) hits her head and loses several years of memory. She lives without memory, falls in love and reexamines her life as a stranger. Except now the memories are returning and she already HAS a boyfriend, and a bunch of friends of habits and ideas that the 'new' Naomi doesn't. So who is real, the Naomi now, or the Naomi of her memories? As a person who constantly has people project who I USED to be or versions they knew of me onto me, I can definitely relate to learning about your own life second hand. “I did what? I said what? No, there is no way I said that?” Is a common phrase by me in our house. What if you could only remember a day, how much would you have to believe or trust others interpretations of who you are? Welcome to Elizabeth Land! You can get the book for a $5 plus postage (send it to me when you are done!).

Please take mercy on Linda, and order her books (1 cent a book?), as after two solid weeks trapped on an island with ME, pure concentrated undiluted ME and she WILL need some fantasy land relaxation.

Okay on to the serious, I have to make amends, because I made a promise here, on this blog and I intend to fulfill it, or as close as I can right now! I warned you that I would reveal all, that I would show the delectable I collected in Seattle (actually I am wearing Hello Kitty Panties this minutes, which I received through the mail? So yeah, keep the lingerie coming! And I will keep the pictures coming!). So here it is, me, exposed, as from my last ‘official’ school picture day: Yes, I am sticking my tongue out and wearing a bathing suit but it is SPIRIT of shocking and appalling everyone that matters right? I honestly will try to put up a picture tomorrow of me, the real me, rooting through the Victoria Secret skimpy panties hoard (I think it was in a special pile next to the Slut, Thong, and Eatable baskets of panties).

First off let’s check in with Linda and myself, because we have a serious topic to discuss with you; one involving community, life, love and …………BOOBIES? Hey! Yeah, you two! Try to limit that kind of stuff for the bedroom, or at least the park, the car, the little fort at the top of the children's slide, the trails in the forest (remember the time I tried to convince you to take off your clothes and use MOSS as a mattress?), the restaurants, and on the lawn of anyone who has a “Love the sinner; hate the sin” bumper sticker! Golly, Linda’s boobies are so soft and delectable, I could chase them all day. Seriously, they are miracle boobies which change every time I grope, fondle, grasp and enclose them. Firm but with just the right amount of give, and unlike a cantaloupe you don’t need to thwack them with a finger to hear that hollow sound. If I do that she thwacks my head.

Okay, now that the small fun is out of the way we move on to the serious fun which is introduced here by our snow girl with kitty ears who is eating MEN’s Pocky! Food is actually gender segregated in Japan (seriously) so dark chocolate is listed as “men’s” ergo dark chocolate pocky is ‘men’s pocky.’ It is assumed that men like BITTER things and girls like sweet things, so if a guy ordered a parfait in a restaurant, they would likely pretend they didn’t hear him. Girls get milk tea, guys get COFFEE. This is a mainstay joke of anime or manga that if anyone changes gender they immediately head off to the nearest cafĂ© and eat all the food they aren’t normally allowed due to social custom. Hey, I don’t make the rules!

Now a while ago I suggested for an upcoming weekend, that people go out and DELIBERATELY do something for someone else. Not a spontaneous act of kindness, but planned. One of my readers, Tammy (she comments!) sort of went overboard and as things fell into place the Grant County Cat and Kitten Rescue was born. Yeah, she started an animal shelter. Talk about an overachiever! She rescues cats with disabilities, deaf cats, and cats with depression issues, she went to a neighboring town to stop a cute calico cat from being put down and killed by the shelter there. She adopts cats out after paying for testing, spaying and neutering HERSELF (sort of keeps her working...a lot). Right now she is struggling, like any start-up; her tax-free charity papers are in the system and she needs to find rent for the building next to the vet clinic because she has 19 cats and three kittens to look after, along with her volunteers and helping vet. Sorry, that should read 19 cats, three kittens and one human to look after. Yes, I was adopted into Tammy’s Rescue Program. She is a sucker for those damaged and despondent. So she has adopted me and given me a job; name the kittens that just were born. And here are our heroes:
The first is a grey female who mews for food are not only louder than the other kittens combined but LOWER than the male. Well, that sounded like a girl who would end up riding a motorcycle to me. There really has only ever been one name for the bossy, louder, take no sass grey: Kate. So, in making me part of something outside of my little room, it gave me a reason to keep on living. Here is Kate trying to get some privacy and some sleep. She eats the most and is still the loudest. They are only just now struggling to open their eyes, so soon we will know what color eyes they have.

The second kitten was a boy with white feet and while I was NOT going to suggest Socks I was trying to find a name that was like Soot or Chimney Sweep. But I ended up giving two names and the winner was Wyn, a common male welsh name for males that means white or pure seemed the best fit. You say it like Wind but without the D at the end, Wyn. The kittens have just mastered purring. I find it interesting that they learn how to purr before they can open their eyes.

But there was a quiet sweet female who always waited silent and patient to be fed. She has a sweet and kind soul, and while she isn’t the runt, she sure isn’t KATE. In the end, I gave some options but it ended up being (I know I am going to get comments about this), Qwen. Qwen is a Welsh female name that means Fair (meaning pretty) and pure. So she is Qwen. She was also the first to learn to purr, and purrs as soon as you touch her and while she is quiet in demanding attention she has the loudest purr. Here she is snuggling up to Wyn.
So that is the stories so far of these these three kittens (who won’t be up for adoption for several weeks as they need to have solid food first!). I was hoping you could give TAMMY your comment (for all the nighttime feeding she has done, just for THESE three) for her work to create the Cat and Kitten rescue. You just have to click here, then hit ‘Sign In’ and leave a comment. Everyone likes to get feedback, particularly on our work of love!

So that was how Tammy sucked one human into her adoption project. And if you are in the USA, you can slip into the post anything from dried food to catnip, from pet stain remover to Frontline to her. Certainly there are some cat owners with unused kitten supplies, who can slip it in a $3 first class envelope. Some of it might even qualify for media mail. Her wishlist is HERE, and if you scroll ALL the way down to the bottom you can make a paypal donation. I don’t know if it is tax-deductible yet (those forms take a slow move through the government bowels) so I recommend only donating your $50-100 now and then come back to donate the thousand dollars later. What? It’s TAX DEDUCTABLE!

Seriously there is something amazing about cats, maybe because they have the honestly we don’t. Like this catgirl at a festival and his disappointment. They let you try to catch goldfish with a paper scoop at the festival and if you go too fast, it breaks. This catgirl is very sad, but I am not sure if the goldfish shouldn’t be glad. Cats always seems very, um, interested in fish.

Here is a scene that anyone who has had a cat can recognize. No, it isn’t the girl is staring off in silent contemplation, it is that the kitten has started playing with the ‘food giver’ and then decided that this nice plushy thing would be great to extend her claws on! Yes, the breast attack! That look on the face and the book completely secondary to these INTENSE sensations, as a friend of mine would say as her cat jumped on her lying down, “Not the claws, not the claws!” For guys, imagine a kitty jumping in your lap and then needing to knead and extend her claws a bunch of times before making herself comfortable. Ahhhhhhhhhh! Not the claws!

Cats and I have a lot in common; we both cough up hair balls, and we both like having our fur petted the RIGHT WAY (okay, that sounded REALLY dirty), and we both don’t like the water. But here is a catgirl who sure must love someone a LOT as she waits in the rain to give an umbrella to her love. See, that’s one good things cats are good at (besides making you give them food); loving. I think that is why lesbians like them (and dogs!).

And here we have our two junior lesbians out on a date which has gone slight wrong, with a bit of slip. The one laughing I’ll bet is named Kate! Anyway, this will be a good memory later in their life, meanwhile the kitten is going, “Help! Hey, get some control down there, this is SERIOUS! WATER!”

Of course, then we get into the lesbian catgirls. This is the kind of askew that I can never get my clothes to look, that sort of sexy, perfect askew. They both look like they are post SOMETHING but she has perfect stockings showing, they aren’t even pushed down? Oh well, they say that practice makes perfect....get over here Linda.....BOOBIES!

We leave the cats to the world that they inhabit and we get to share. They are mysterious, they are loveable, they are independent, they are cats. And it would be a poorer world without them. Due to Tammy I don’t know how many but many cats have been adopted after love and medical care. Thank you Tammy.

Saturday, January 24, 2009

Watching and waiting for me to die: I want to live.

I went down to my favorite video store. At first, I was going to wheel down there to “prove” that I could still do it. Yeah, ‘prove’ after only avoiding the hospital last night because we had the special mask for high concentration oxygen. My cabinet sized concentrator was going full bore and I still had Raynauds on both arms up and past my shoulders. I switched to the nose piece and in minutes it was dramatically worse. Back to the mask and after a meal and some liquids and five hours, I started to pink up. My blood pressure was so low only caffeine, pain and pure oxygen were keeping me conscious. Without that mask and without Linda there to check blood pressure, oxygen levels and everything else, I would have had to go to the hospital.

Then the pain, two opiate pills, two sedatives, and I slept, until we had to go down to one opiate or I would blow out my liver. I woke up almost immediately from the pain, tried other pills, woke up every 15 minutes after 3.5 hours of sleep from pain. Some of it, I found out was bruises from when I passed out after coming home from Badminton. As I passed out my head tilted all the way back and my arms dropped back, I flipped the chair and bruised my arm and shoulder (my head, nah, it’s fine, well except for the MSA thing). I kept saying, “I just did BADMINTON.” So much for taking that boxing class this month.

The pain interferes, it makes it hard to remember things, to remember anything, even things people say a few minutes ago, and it makes it hard to find words and to talk. It is like all the neural paths are blocked, pain makes a wall; creates a traffic jam in my head. Yesterday a man came upon me while Linda was downstairs getting them to find the key to let me IN (as I cannot go up the stairs like everyone else, odd that). He was concerned I was lost or in need. For over a minute I could not say a word, I gestured downstairs, I made vowel sounds, I went from pleading looks to ‘okay, let me start again’ looks but when people, any person, asks me a question it is now the hardest thing for me to access language. Going, “Aaaaaaaaa, uuuuuuuuuuu” for a minute, I found, is NOT the best way to convince someone you are NOT a completely feeble twit in a wheelchair who needs SOMEONE to be her keeper.

At the video store they cut my overdues in half because they know that I am dying. Sort of a super crip card. They don’t know why dying makes my videos late, maybe I vomit blood and pass out or something, but they accept that the late videos and me dying go together. Or that I never used to be late and now I am late all the time and I LOOK really sick. In fact, the staff don’t tell me about new releases for next month like they used to, and they, like Linda, like the home care staff, like everyone including me is watching and waiting for me to die. I can only come down to the video store, which I used to fly down to once a day, once every week or two. No one asks where I’ve been. Eventually Linda will come in to the store after a delay of a month or two and one of them might ask how I am doing and Linda will say, “She died six weeks ago.” And they will nod and say they are sorry but they nod because they expected that.

In fact, Badminton is the only place where I am known as a sportswoman instead of ‘That woman who is dying.’ I am accused of cheating by throwing myself out of the wheelchair to hit a birdie while in midair or that I bought a supersized wheelchair to make my reach longer. I am known as competitive; I am accused of psychological warfare (justly so). Yes, I am going to go back there.

There were for me three stages, or four, in my life as a disabled person. First stage it was kind of sucky but also kind of fun, because I got to try out new things. And I like new things. I got to figure out how to do things, try new equipment. I did a wheelchair race in a racing chair and won $100. I spent the money on gifts to send out to people. That race I won now rests in the hand of someone who holds a carved little round box and thinks of me. I think that is the right legacy.

That first stage had paperwork, but it also had advocacy and there was fun and going places. It was a pain in the bum to fight with hotel managers but it was also doing things I had never done before (like jumping a wheelchair onto a Tokyo Subway!).

Then there was the 15 or 16 months lost in tests and hope: going to this specialist, going to that one, waiting for this test, waiting for that one. Of course, I KNEW that it was MSA (plus a few friends who jumped on board my autoimmune system for a ride) but maybe the Americans who do seem to have these clever medicines and stuff like IVIG, would know what to do. And why not live a few years, after all, if I didn’t have the autoimmune version of MSA, the one where people died so fast they had never been able to get a test group together to TRY drugs on them, then I could have four years. And when you are 18 months in, or 22 months, then four years sounds like a LONG time.

Then there was the lull: a few months were I had nothing, no tests, no more doctor visits, no specialist, just sad attempts at pain control and everyone covering their ass as best as they could. Winter was here and yes, new horrible symptoms appeared. To give you a contrast, in MS, you can use so much energy that once you stop, you can’t even move. In MSA, because the little guard or signal to say, “Hey, stop now” or the feeling that you CAN’T keep going anymore is gone, as it has been destroyed or EATEN, I can keep going. So then I push to do just a FEW more postcards and when I stop, the energy for my heart to beat has already been used up. So it beats erratically and I have to lie down right then and use up 4 times a days worth of heart meds to stabilize me enough to sleep. I can talk until I pass out, and sometimes, because I CAN, hour after hour, day after day, use up ALL my reserves, the amount of time until I don’t have enough oxygen converting in my lungs and going to my BRAIN to keep me conscious, is only 4 minutes. Or I pass out and the energy to keep my ribs expanding is gone, and that has to be done by someone manually. It is hard to grasp, to understand that I can literally, and without knowing, talk myself to unconsciousness, even death. And I would feel nothing, because the part which says, “Oxygen deprivation!!!” and you feel like you are underwater and need to get to air… is gone. In fact what we consider almost every BASIC SURVIVAL signal for the human body, is gone. Autonomic Failure.

So the final stage is waiting to die, while those around you go to support meetings and read grief books. And you just try to get on day to day, while people watch you, and I watch myself, waiting to see what new symptom will appear and how much closer am I?

So I, when I wheel around, when I am online, I see things in a clouded way because I too am waiting to die. When I buy something on ebay, I pay too much because I want to know what it looks like and pay right away and hope they send it and that I am still alive when it arrives. I don’t wait for the best deal. I cannot save until tomorrow because there IS NO TOMORROW. Or should I act as if that doesn’t matter, try to order things that may not come for a month or two? Is that being sensible, or selfish? Am I in denial, or am I living as if I plan to live? Should I have excitement about a TV series, about when will this TV series come out on DVD? When the reality is not only, “Will I be alive?” but “Will I have ability to understand it then?” When I say I want to live, I say, “I want to go to Hawaii” which thanks to a gift, now has a fund, a little pot and like Tokyo, I am about to sell almost all of my manga to add to that fund. And then I will sell DVD’s and what I can, with the energy I can. So I am defiant, I am saying I want to LIVE….but what is that really, a few months?

There is no hope and I have no hope. I have no hope. No one whose main objective in going to another country and paying up to $1,000 to get a note from a doctor saying you are going to die in less than six months so they can have a better quality of life has hope. Hope is gone.

And yet, I don’t know what to do. Should I act as if I could live for months, order things for the long term, or live for today? Should I blame myself and feel the burning shame because of the money I have spent on stickers and stamps and postage stamps for postcards that will mean WHAT to Linda when I am gone? What will she do with them?

No one wants to talk to me about it. They want to support me. But what should I do; I HAVE tried to escape the present by going on a little shopping spree. That didn’t help. I have tried to look to the future by ordering things and having to wait until they arrive. Except then I forget I ordered them and don’t know why I bought it. Or I forget I ordered them and I order them again (that has happened MANY times). Or I am told it is backordered and I become insanely angry; I want to scream down the internet, “I am dying you idiots, I cannot WAIT for a back order.” I have tried to act as if I will live until May, when all the air conditioners are dragged out again, when I sleep ON ICE, in a vest OF ICE. And this time, I WILL be too weak and I will die.

Currently, I feel no pleasure, or little, I have very little joy. I live in a pain filled waking coma. I have pain, and I have tasks and when I am tired or in pain, I cannot talk, I feel as if I am carrying boulders in my mind, just to get out words.

Linda sat across from me today and I told her: “I want to go back to boxing.” She was surprised after the hell of last night but I said, “I know, that I will be slower, and weaker but….” And here I couldn’t find the word or words I wanted but Linda waited and she said finally, “But Ian understands.” And I nodded.

I said, “I know that I will be humiliated, going back to the same people so much weaker, but I want to….I have to know (to know if regardless of it ripping my muscles apart it might help me).

“….I don’t care how much humiliation I take, I don’t care about the pain.” I tried to steady my voice but I couldn’t, “Right now, I have no hope, I am waiting to die, you are waiting to see when I die; I talk to the lawyer a couple days ago about my living will and when you will give me a morphine overdose. Then on the phone I make out my will; I hear from my government manager what I need to do in order to die the government way. Everyone is waiting to see when I die.”

I paused and I looked around. “I don’t want to die.” I said it again and the voice was raw, ragged and honest, “I don’t want to die.”

I continued, “It is like someone is asking me to leave everything I care about, everything I know, and all the people I love in a moments notice. I know why this is happening to me….and you. I believe that God thought I could change: that I had potential.”

Linda said, “You have changed, you ARE a better person.”

“I think so too,” I said as a tear rolled down my cheek, “But did Lazarus WANT to die?”

Linda shook her head.

“Lazarus was afraid, and he send a message for his friend, who NEVER came.” I said. “The first question I will ask (whatever is after death and whoever I see) is “Why? Not why did I have be disabled or ill (that has been one of the great blessings of my life, to find people who care so much and to find a way to articulate my caring to others), but why die?”

I was crying, “A year.” I said. “A year would be beyond hope, beyond anything I can or have imagined up to now.” Linda’s head was down, and she was crying too. It was beyond what she could imagine from our day to day.

“I don’t WANT to go to heaven, I don’t WANT to rule Galaxies or rule people (I was referring to many various beliefs on post death including the taught Christian ones), I WANT TO RULE THIS ROOM.” We looked around. “I want to rule this room, I want to be able to read these books, I want to be able to watch these DVD’s, I want to play these games, I want to move beyond this chair. I want to move boxes for you, I want to stand up, I want to sort books and do a book faire…….I want…to touch your hand.” She looked up and we both were crying. “I want to rule THIS room.” and then the sobbing took over.

I was on oxygen as I had been since 40 minutes of getting up.

After a time, and a blowing of noses, I said in a voice that meant I knew what I was saying but I didn’t know how to do it, “I want to stop waiting to die.”

“…and I want others to stop waiting for me to die, and I want to live. Not denial, but a real chance at living. I don’t care what shame, what public or private degradations, I don’t care what I have to do, to get a year, to be as I am now, and live for a year and be with you and see things with you, and have a year in this room…..” We were both crying again and holding each others arms. This was our impossible dream, that time could stand still. That I might be below what most people would consider the threshold for ‘a merciful death’ but if I could, in order to live one year, I would stay happily like this (with better opiates I hope). But we both knew that we could NOT make time stand still, not by wishing and we did NOT know “Why?” except that I was dying.

I continued to talk, “I have to go to badminton. You know how I used to go and then say that getting the cardiovascular system going was going to prolong my life. I DIDN’T KNOW!” I shook my head. “But now I HAVE to try. I have to go and go and do two games, not three just two games until it stops hurting so much and then I have to do boxing. (and we both knew how close I came last night just with badminton; I was dying, slowly dying because there wasn’t enough oxygen to get to my brain and my lungs weren’t working. If it had been any worse, there is nothing they could have done at the hospital but the same thing we did and then watch, to see if I went into a coma and died). I HAVE to, I have to try.”

“I have to do it because I want to live, to live instead of just having people wait for me to die. Let them call me a liar on the comments, I don’t care, let them want their gifts back, they can have every donation back when I die from my death money. Because I have no hope, because…..” And we held each other around the shoulders and cried because she understood what I was saying; that I wanted to do this, for me, for us, to find a way, ANY way to have that promise of a year. Just the promise of it would be a blessing beyond what we could imagine.

That was a hard conversation. It was a real conversation. It was in daylight, not in the night when fear comes. It was the statement of a person who is tired beyond belief of the filter of death.

I call my bed, “The death bed” because this is where the pain is (from the weight of my body on my spine and torso), and this is where I WILL die one day. I hate going to bed, because I don’t know if I will wake up. Because I do know that I will hurt, and I will have nightmares and my body will hurt and wake me in pain for yet another day. I know that I will cry, or tears will spring to my eyes spontaneously from the pain. It is the bed of death.

Reason to live #12: Because I no longer want to be the woman who everyone knows is going to die.

That’s a really crap designation. I want to ASPIRE to be the woman for whom things are painful, and difficult, and dangerous because I COULD die if I screw it up, but maybe I won’t. I want to be the person who plans things, who accepts help, who is selfish enough because it keeps her alive. I want to live and be known as that person, the one who probably should die, but no one is laying any bets. Not to live as if I am not going to die, not to live as if I could not die, or that I should not die, but to live and do what I feel I need to do in order to stay alive.

And to do it over and over and over again, and for long enough and with enough conviction that people start to believe it.

When I came back from the Video Store (with videos I have not seen as I have been working all day!), Linda said, “Let me help you” as the carpet is horrid to wheel on. I hesitated while I pushed on for one turn of my wheelchair wheels and then sat back and said, “Thank you, I think I don’t need to prove how independent I am to this carpet today!”

Hey, it’s a start.

Wednesday, January 21, 2009

Badminton, illness, and change

Change happens. I know this, we all know this. And yet it bothers us all the same. When we are young it is sort of exciting, while as we age, every little spot or ache is a new limitation. These are the small changes. But across a life there will be dramatic changes, ones which change not just the outside, but the way who we are. Whether we want them to happen or not, they do.

A person is hit by a car, a girl walking home is raped, a man is attacked and beaten with a baseball bat, a person falls down a flight a stairs. Change. Maybe everything eventually looks the same, but it isn’t, is it?

Being disabled and being ill, or impaired is like that. One day, a doctor says something and then it echoes inside you, bouncing back and forth and you have to make a choice: chemo, radiation, amputation. And then, if you are lucky, after a period of horrid days which consist of a hell that cannot be described, the night before chemo, the vomiting just seeing them bring in the bag of it in special anti-toxin gloves. But one day it seems as if life goes on, and while you are not the same, you have a new normal, just a check up every three months, then a year. A week of worry, before the test, before the results and then you are given back a life you realize had been temporarily held by another.

The whole diagnosis process for disease: sometimes it is quick and sometimes it isn’t. Meanwhile, it is a mix of excitement, dread and the horrific. When they come back and tell you that they need to inject you with more radioactive material without sedation because your blood doesn’t seem to circulate correctly, that’s pretty horrific. When they tell you that you are going to give 21 vials of blood, then you need to pee in a jug before coming back in two hours to give a few more vials of blood, that is pretty horrific. But then there is the new people you meet and finding out that you aren’t the only one who had Raynauds, or the only one who lives with the love/hate/burn down their house relationship with specialists. And there are new sports to try, new things to do, and for someone like me, lots of challenges. And while I know that some people need to stay in bed for most of the day I don’t get it, don't understand how. It is just pain right? (well no!) I wheel myself out every day, wheeling up myself hill crying. I visited places, I traveled. And then things changed.

I lost a year, maybe 16 months in tests, and somewhere I fell off the grid and now I am sort of in a constant status of bouncing in and out of dissociation or insanity. Because I am dying, and not in a plucky, still have strength and go do races dying way anymore but in a being at home and wanting to vomit. Falling unconscious several times a day, bleeding out of my nose, my anus, checking my eyes for blood, for the starbust of the brain deprived of oxygen. Having to be checked 20 to 30 minutes of my day, every day, because I stop breathing several times a day.

Since last week was a total bust, THIS was going to be the week where I did not work, where I sat still, very still, and where I rested. This week was when I gave my body a chance at living into the future. I was to REST.
I went to badminton tonight after many, many attempts to go to badminton. My first time in I don’t know how many week, and neither does Linda. It wasn’t particularly pretty to start with, the birdie would fly towards me, the birdie would fly past me, my arm would shoot up and swing at empty air a quarter second later. Not quite getting those connections. But I improved. It wasn’t like it was before but it was enough. I could serve and I could hit the slower ones. And I could hold my arm ready for the rest. I won the first game and it seems that for a second or so, I smiled, and this one, while it isn’t real, it looks real.
My final game was with Linda who had come with me, in case my volunteer didn’t show (she didn’t). Linda was moving, she was hanging tough and going for the birdies. She came to me to see if I had an extra hairband. I didn’t. Then I suggested she use her “Girl’s gotta fly” blue wrist band – which not only helps my health fund but can be used to hold your hair back in a pinch!

The game was tied until my partner and I tried this thing called “strategy”; I try to get the birdie over the net and cover the mid range and he cover the back and we soon had Linda and her partner running. Not that they didn’t fight back, but in the end we were triumphant.

I took the victory with the good grace and the elegant nature for which I am known for in the sporting community. Well, I am known for a PARTICULAR attitude. Hey, I didn’t lose this one so you don’t have to see my pouting face.

Everyone will want to think that yes, I am back. I am sick but I am fighting back. Well maybe I am going out and I am going to badminton but life has changed since I last showed badminton pictures. I am writing this in a race against the oxygen in case I need to go to the hospital. I have been using a EMT mask to keep the high flow oxygen contained longer and yet my hands are turning purple, and I am on two painkillers and have a blood pressure which explains why I fell unconscious twice since coming home. Is it my damaged heart, my wonky vascodilation, my lungs not converting or all three? So much for ‘light exercise’, eh?

On Monday evening, after my nap, I was too fatigued to keep my body upright and was leaned against the wall. Still there 30 minutes later when Linda checked on me. Fatigued to the point that I felt, I knew that this was it, so with my arm supports I wrote some goodbye’s and for the rest of it I just sat there listening to my breathing, stop and start. I did not exactly have peace, but I felt, that everything that I could want and accomplish within the limits of this illness was done. The postcards sent, the packages sent, the blogs posted. It wasn’t everything I wanted but when I couldn’t move my head, and sat on the edge of consciousness, this was it then. I would be dead next time Linda checked.

I wasn’t, but I still don’t know why.

We all come into life different. The way we experience life, the personality, the sensitivity, even how we are physically is different, to the point of being disabled from an early age. But people adjust and get on with it. I had my own interaction with that, a friend with two heart transplants by age 16. But sitting by and living that life is different; I have learned.

Then there are those for whom they bring their own particularly innocence or flair to this society; and while I’m no Qwen, (where DOES he get those clothes...and matching arm warmers?) I like to think I’m fairly memorable. Maybe because I am often threatening high governments bullies, or talking to the police one day to give me a job wheeling down bad guys, the next day trying to talk them into giving me a police record (and to hand me a big rock I want to throw through the Ministry of Health building). Then when they come to check if I am murderer, I volunteer to be a human shield on their next armed assault since I can’t feel anything!

The thing is that I knew who I was and the one thing I knew was that I might slip, I might fall for a time but I don’t fall down; I don’t fall where I can’t get back up. That just isn’t who I am. I am Elizabeth McClung and be it a bully or an army, I stand opposed; whether joined or alone. But see, the little micro-organisms which are eating me as food, which are literally destroying my brain, eating it. Destroying my nerves, they don’t care that I am “Elizabeth McClung” – and so I fall. I fall and I don’t get up. Welcome to disability world, the theme park which has a slide for an entrance and no exit.

They don’t give you a book when you start noticing bits not quite working right. You sit there, and soon you know you are unwell. You are sent for tests and you are terrified. And then they come back negative, and you are relieved, and then they keep coming back negative, and after several hundred negative tests you are terrified again. If people look close they can see that you aren’t well, but hey, that could be anything. And strangely, at least for me, and for others, what other people think makes a difference. I spent a long time lying. Tonight when people asked where I had been, I told them I had a bleeding problem, but “internal mostly, I like to keep my problems to myself” (no one laughs at my jokes). They asked and I told them the name of my disease, they wanted to know what it did and I told them. “My God, my God!” one guy kept saying as I wheeled onto court, my turn having come up, I called backed and apologized if I had bummed him out.

I want to be the person who is able to break the rules but diseases don’t have rules, at least mine doesn’t. It simply does, and I live or I don’t. Change happens, and this time it is going to be ugly, it is already ugly. Am I the person who is drawing the curtains on the 'fight anything' aspect of my life? No. It is my disease. I often can’t breathe, then there are times I stop breathing, times where my heart stops beating, times, where I cough of phlem, and blood, times when I try to take a dump and blood comes out because I stopped digesting certain food, and they are ripping me up.

On Monday, my government manager of care acknowledged my impending death, and in doing so, withdrew care except the offer of “respites” where I would be kept in bed all day, in a hospital setting. I already have that. I have the same equipment and medicine they give me at the hospital here at “Station 2” – my desk, with recline chair, for passing out. I have my blood pressure charts, I have my medicine from vaco-dilators, to blood thinners, to seizure cycles medication, to heart rhythm medication. I have three levels of oxygen, of which I am now on the highest, the mask. And when it gets worst, I go to “Station 1” which is the hospital bed, which has the same things, but the advantage of raising my feet up to put more blood in my heart, and waterproof mattress so I can bleed, shit and pee over it.

The manager was going to be withdrawing certain services. I was to allowed to not be moved from bed if too weak to raise my head. There was some concern that workers might have vacuumed for me! But other than that, nothing was to be done, at least not until a doctor promised the government manager that I would die within six months. A few months ago it was 1 year, they required. That I have a note saying I would die in one year and I could get hospice and palliative care and pain medications and nurses. But I guess there are budget cuts and when I called the palliative care aspect of VIHA (the government) they told me that if I could not call upon them until I KNEW there was only a month left, that was best. The manager knew I was dying but until someone promised I would die SOON, and put it in writing, no help.

So we are going to Seattle to get, beyond a diagnosis and maybe something to prolong my life, also a note to promise that I AM terminal and that I will die. Because the medical evidence shows I should die, that maybe I should be dead already. That I do have a very rapid form of MSA. But it looks like it will cost us $1,000 for a visit, a consult, and the moving of me, very slowly and carefully from place to place down to Seattle and back to have a note saying, “Yes, she will die in six months.” I know several people who died without the note; and they got no help. I can get pain medication if I am terminal, no one will worry about addiction then (woo hoo Morphine here I come!). Maybe I can get that ‘last wish’ program to give me my last wish; the VIHA building in flames with the notice, “If you can get a fire marshal to verify that this fire will be put out in an hour or less; then fire fighting techniques will be applied.” Or should I just ask for the trip to Disneyland like everyone else?

Change has happened. I can’t reply to every email (1/10th would be nice, since I tried to reply to all emails from one morning and did 32 emails – then I couldn’t sit up anymore). I simply can’t blog every day. I would like to blog four times a week. I notice that my numbers are dropping but I can’t do anything about that. I would rather live than have another 400 people a day reading. Last week I rested and watched TV for 5 hours (yeah, that was the whole week, not a day). This week, I have just sat and rested 2 hours. Change in habits, in who I am takes time, and I AM trying. I am checking out this new future, and trying to see how and where I fit in it.
I can’t remember things, I can’t remember more than 48 hours ago, I mix up words, I have a hard time answering questions, I forget the morning if I have a stressful day, I have forgotten most of my last several years. Linda talks about trips and sometimes I remember and sometimes I don’t. I used to have as close to a photographic memory as a person could get. I knew hundreds of thousands of books and thousands of movies and now, maybe I might remember the title of my favorite book, and I might not. My world is very small, it is the computer, it is this desk (I can’t reach most of the room), a bed, and that’s about it. It is a row of DVD’s, a row of manga, a gargole, an anime girl in a wheelchair, and origami of squirrel along with a row of pills. That is the life I have choice over, that is the part of my life I control.

No, I haven’t given up, no, though I know the feeling of being on the edge, I am not ready to die. Never the less, between the disease and the society they have literally put me in a little room. That is where I sit, looking out at the stars and the tree, across from me. And the little things, like the food I have within reach, like the books or entertainment within reach become very important. This is what disease looks like. People send flowers. The flowers wilt. They get thrown away. I get tired, so tired. And it seems at times that people keep waiting for the old “you” to come back. When I want to scream that ‘me’ is right in front of them. They are the ones who can’t accept this final 'me' and so they, the last of those who held on through hope drift away, like family members, to ‘process’. And the pain, the hurting all over and the way it rains against the window makes it easy to get upset over nothing. And I cry at odd times, while most of the time I don’t cry at all. I talk about what your life is, plainly, and other people cry. And other people sit in horror. Someone else leaving. Because when it comes to life, I don’t know if I am entertaining anymore, but I am fighting to stay conscious to tell you what living at the edge of life is like. And quite honestly, if you want to be entertained, please go masturbate. This is life, much like babies, who are very cute but also shit with unbelievable frequency, and vomit, and drool, and vomit again, and get sick…..a lot!

If you have a certain type of disability or disease, you already know what I am talking about, and maybe you can add or adjust me. Or just put "you" intead of "I". I still live, I still have emotions, I still care, I still guard the few things that are within reach, I still look out the window and wonder what people are doing. I wonder what job I would have? Would I be in a restaurant with Linda now, and would we be talking equity instead of seizure padding, or how January and having to pay the annual insurance deductible again is hitting us? And would I always know my name and Linda’s?

Change happens.