Breath, Wheel, Fight, Dance

Sudden prolonged weakness. Too weak to move, hard to breath. Linda and a care worker use the sheet to roll me in bed. I lose almost two hours. Linda tells me I had problems breathing, stopped breathing. She breathes for me, holds me.
I was going to go wheeling that day. I twitch my head to get the worker closer. "Tomorrow" I promise her, "I'll wheel tomorrow."

It might take 2-3 hours to dress and be ready but I will wheel. I am going to be in a 5K within a month, then a 10K, the women’s cancer 5K and Terry Fox 10K.

This week I found a new foundation: the seven people doctors in who study autonomic failure diseases have created this foundation together. They are just now starting on a drug trial, a drug and control group (group that gets no meds) for finding a drug that helps. I think about the Hospital which specialized in Parkinson’s and MSA-p, and how the director told me I needed an autonomic specialist

“Where? Is there one here?” I asked and she promised to look. But she never found one.

Three years later and there is the start of one. The doctors are looking to base themselves in one or two locations. I want to live long enough to know that there will be something other than pain relief and gatorade for the next person who gets this.
“It is a cruel, cruel disease.” Linda said to me today. It is, cruel on both of us. It will be studied at last, medicine at last, not while I live, but soon maybe.

They found three patches of Fentanynl on me, left from previous days. Oops! The patches burn into my skin, so I have to use aloe afterward. You can see the burn on my neck in the previous post. Linda added the adhesive cover patches to the wish list.

We use covers on the Fentanyl patchs because I don’t lie in bed like others, like they expect me to. I move, and wheel, and exercise. One day I’m going clubbing.

“I want to video my workout next time.” I say, “I don’t think they would believe it. I’ve haven’t had a care worker yet who can keep up with my exercise. Not even the first 20 minutes.”

“I don’t think the readers know what you do to survive.” Linda says. “I couldn’t do it.”

I use my hand to rub between my nose. “If you want it bad enough…”
I am rarely at the computer now, either far too ill, or if not, I am up and 'doing.' When I am here, I get my fix of good films and plan my next moves. Also I watch this, so that I remember to keep fighting, and dancing.

Here is my remedy! So while I go dance with the Enemy, you keep on moving, ‘kay? And turn up the volume! ("...everybody seems to have given up hope of trying. I haven't. It isn't easy and it isn't supposed to be” – Terry Fox at 3,113 km)

An Apology and some facts. Sacrifice: your fear, your action, your choice.

In my pride I tried to be everything, the shoulder for everyone, super-Beth, always EFM – I apologize for that.

“I’ve a secret, going to keep it…..two can keep a secret if one of them is dead.”

I had another stroke, larger than a TIA, but not as bad as the one I had in 2008. But it has affected my body and my brain. I have more brain damage, have lost function in my arms, and hands (particularly on one side) and speech. It felt like a grenade going off in one part of my brain. And I couldn’t move or even talk, and when I could, half of my muscles were useless. It took almost an hour to have a single word understood.

I am trying to help you understand, lying on the ground, the things I’ve fallen on bruising me while inside it is like a stadium lights going on with pain.

In horror films or books, the character must take the pill daily before the pain overtakes them or changes them.

For me I have a slew of pills that I take every four hours. This includes people waking up and me up through the night to give them to me or I am screaming in pain: every four hours – and that covers 35% of the pain maybe, makes it so that I can sleep. And my face is changed, my body, feet are swollen, or twisted, broken and misformed. One ankle is skin over bruised bones, and can’t be touched, while on the same side my arm swelled up and burned for two days, and my heart rate resting was over 120 for 48 hours. The reason? I wrote. If I talk, my body burns, until I pass out.

But imagine me silent, a still plate riveted into my skin over my mouth, welded shut – only then can I survive the day without passing out. I get little post, a letter and a couple postcards a week. Emails are few. Without a blog post, nada. I don’t see outside, not even though a window or a slit but once a week. I am not in a torture film. I am surviving. All I need is leave my humanity behind: never to talk, to move, to write, or see the outside world, in pain at every moment. It isn’t a snuff film, it is Wednesday. But I suppose it is a snuff film after all, just a very slow one.

And that is the cotton candy: pretty.

This is what I apologize for, that I hid this, trying to be EFM, to please everyone including me when the reality is I need help. I am struggling to survive and losing parts of me, aspects of my identity, loss of function and changes to my body every week. I continue ONLY by sheer and determined will power. I speak by a concentration of will and accepting of pain, I move doing the same. I might have to lie in bed writhing because of an email I wrote, my arms swollen, groaning. I lied to you and I am sorry.

I tried and tried to keep going, but if I do, one day Linda will have a bad day, and/or I will have a bad day and I will die. Or I will hang myself succeed. And not because I want to die despite it all, but because sometimes, living in a bath of acid gets overwhelming.

I need help, I am wanting you to come into my illness, my life. I don’t want to do it alone anymore. I can’t.

Read the dialogue below.

Before ‘The Mentalist’ Simon Baker was ‘The Guardian’, an arrogant young attorney whose excess of drugs, drink, pursuit of victory and DRIVING ended him up in community service at Child’s Legal Services, working out of a broom closet.

Later in the season, Fallin meets a spoiled rich boy, kicked out of prep school for gambling, maybe 13. What the boy doesn’t know is that his mother is selling her company because of her late stage cancer. Nick Fallin’s mother died of cancer. From the episode ‘Family’ and a speech that should be told to every relative, friend, loved one of a person with cancer, a chronic illness or a degenerative illness.

“Radiation and Chemotherapy therapy: basically they are going to bring your mother as close to death as they possibly can without killing her.

She is going change before your eyes: her hair will fall out, she will be in a LOT of pain. She will be susceptible to EVERYTHING.”

Nick pauses, searching that part of the pain he lived through, as a loved one.

“She will feel ugly. And useless. And very alone. And afraid. And you are going to have to be tough for her.

You can’t treat this like its YOUR problem she has cancer…..because its not. It’s hers. And the further they go and the longer she lasts the sicker she will get.

And you will PRAY that she can make it through the next round…..because if they give up on her….and if she gets too weak, then she will die.

And if she dies……then you don’t want to look back on this time and remember that you behaved like a spoiled child.

If she dies, and she gives you the GIFT of letting you into that process…..the knowledge of what it is…..and I hope, for your sake….that you walk out of this a stronger person.

You have that choice NOW.


Don’t screw it up.”

Yeah, that’s cancer, that is also Lupus, and Lymes, and CFS, and CVID, the life of a chronic condition and of AAN. People (friends, comrades, lovers, family, those who care) do screw up. They screw it up not just because they are scared but because it requires sacrifice. They don’t see it as a gift, they see it as a burden, they see it as bad luck, they see it as unfair, and for most people, if they can, they make sure not to see it at ALL.

People think if they work in care services that they ‘care’. Sacrifice isn’t when you get paid for it, when you get to clock off, or take a vacation, or leave people, like me, who need constant service because ‘Hey, it’s a long weekend’. That’s called a job. Sacrifice means ‘acting with less concern for yourself.’ It means ‘generosity’, ‘selflessness’, ‘self-denial’, to Sacrifice is to make less one’s own desires/self interests to help another or a cause. Except Baby Boomers are the ‘me’ generation, and the X and Y generation are the ‘me, me, me’ generation.

The last time I saw a reality show, it was to become a clothes designer, and the person eliminated was the person who helped another with her project. “There is no place for anyone but YOU in this business, you first, you only” the panel of designers eliminated her. The closest we come to a philosophy of kindness is ‘acts of random kindness’ which requires a) only having to think about helping anyone other than yourself for a few seconds and most important b) knowing NOTHING about the real needs of the person. Like a bandit, you strike, you pay for a coffee and dash off.

That kind of love, which I used to think was the basis of all children, to want to give, isn’t. Siblings steal from each other, and the most popular word for children after ‘No’ is ‘Mine.’ Reciprocity isn’t an idea we are taught much less sacrifice. But then, I grew up being told to take cold showers, and do what I feared to train myself to be more than my own desires.

But at the core, a person MUST keep some aspect of themselves in order to simply survive. If you give away all food, you DO starve (or as I did, if you give all your tuition money to a person who says they need it and you do, then you are screwed – particularly if you find out later they are a drug addict – I don’t regret the giving, I regret not being a bit wiser). So let’s say that you need 40% of your life to survive. So when you are with another person you love, you can lay down part of your life for them, say 15%, go to concerts you don’t like so much, the sacrifices we make in a relationship, the sacrifices needed to make a relationship work (tip: if you want everything to always go your way, a relationship won’t work).

But our society, is largely made up of individual people who are selfish. I am selfish. I work against that. I don’t have a TV, or much else because society teaches up and rewards our selfishness. In Victoria, in the UK, in countries all over the world, people have told me that they knew I wasn’t from around there. Why? I honestly stopped to help, and I stayed until I did.

Try it. Look for someone who needs help with lifting groceries, or help carrying them in, or anything and see if they will believe you really want to help? That you MUST be lying.

I wanted so badly to believe in a world where love, not apathy and selfishness was the standard. Love enough to put someone else first, to lay down the actions of a life, sacrificing the ‘me and mine’ for others, putting aside your interests and selfish desires so that another may have a better life, while maintaining that 40%.

I romanticized the whole process. I saw myself as a person to raise the banner. Because in the heat of battle, the banner, or ‘the colours’ were raised so that those fighting would know that their cause was still in the battle. I honestly believed that it WAS a battle and that people were fighting (and that one day we might win). It was that VANITY which drove me and broke me as I tried to be all things for all people, no matter how much sicker and sicker I got. That they kept asking, though I was so sick, I couldn’t move, couldn’t leave, I just kept trying to give of time, of energy, of myself, because I was somehow holding up a banner, right? No. And in case anyone uses the word ‘inspire’, you have to include what was inspired, because it, like ‘love’ and ‘caring’ is an action word.

Postcards, huh? The problem is that a vast majority, over 90% in a hundred don’t want, and don’t care about sacrifice, or others. If you go to a church, ask the pastor how many people visit the shut in’s and how many attend to find out the percentage (and those are people who have pledged themselves by religion to ‘self sacrifice’). People don’t want to know about illness, the hand-holding, the sweats, the groans, the vomits, the assisted eating, the pain so bad you can’t sleep, the isolation which is required in chronic illness or cancer treatment, or Lymes treatment. And for the dying, much like those with cancer, the greatest desire is that the person disappear and NOT reappear until looking kinda normal (and for those who tell me how ‘good’ I look: I could have skin sloughing off, bits rotting and looking like a post nuclear film and I would still be trying to get into drop-in Volleyball – they will have to get used to me doing a runner at the palliative unit – dying people are supposed to lie down, shut up and well, die – I have no regret in disappointing those who are irked I am not already dead, nor those who are disappointed that I am getting dramatically worse!). There is a LARGE group of people who want to act as if the person is exactly the same (only out of sight….until they die).

And that includes care workers, on-line friends, face to face friends, relatives, they still are stuck in two years ago, thinking I have the energy for advocacy for them, or anything other than survival. They might accept that I (and you if you have a chronic/degenerative disease) are a little sick but still make demands, sometimes in assumption, that reflect this view that you are like you were. “Can you collect a box of that together for me?” they email someone who is bed-bound, or ‘write me when you can!’ they tell someone going into the hospital.

Others see the dying as ‘The Confessor’, a great way to have a ‘garbage buddy’, a person who will take all the bad news they have to share, and the best thing is they won’t ever see them if they are an on-line friend and they will take all the crap with them. Are they using a dying person in pain as a sort of waste bin for their own baggage? Yes, and it happens in the dozens.

Not really the greatest display for the human race, much less us who hold our heads high in arrogance of our privilege. As for me, I dragged myself by rotating my pelvic bones to move me a quarter inch at a time until I could flop over and pull myself with one shoulder, including pressing my face into the toilet from the bottom all the way up, to try and get on it.

So WHAT? My brain was exploding, I was 90% paralyzed and if that means deliberately falling out of a bed, wheelchair, whatever, I have done and will again. Done it naked. Naked in front of strangers. Who cares? It is surviving. And when you have experience in that, you know that this is nothing to be so ‘ick’ about.

Apology: in my pride and vanity I believed I could demonstrate and inspire by that demonstration of self sacrifice beyond human limits. I wanted to show that any of us could be there for every person. Noble goals, but a stupid outcome for a degenerative disease. And I’m sorry.


Because in that ‘sacrifice beyond limits’, I pushed myself in giving energy and time beyond that 60%, so that I was at 34% when I needed 40% to live. I passed out, I went into seizures, I was losing body function. But it didn’t matter as long as I cared and acted, right? WRONG! In my decision to try and give more than I could, someone ELSE has to sacrifice so that I could live, someone had to help me breathe, someone had to help me in bed, someone has to care for me for the days afterward – and that was usually Cheryl and Linda. I’m sorry.

I also apologize to all of those to whom I lied by hiding how much it hurt, by hiding how much energy it took, by taking away your choice by hiding how bad my health really was. I apologize to Cheryl and Linda for putting so much on their shoulders, and taking so much from them the days they are with me, just so I can pretend I have a fifth or an 1/8th of the energy and limits the majority of readers do. I don’t.

What takes you minutes takes me hours. HOURS of determined will and pain. Pain in the bones, pain in the muscles, pain in the brain, and yet, I go on until some days, when all supports are gone, I realize how things have changed for the worse when I wasn’t looking. You brush your teeth in 20 seconds to a minute, and I brush my teeth and pee in 30 minutes.

This weekend, without saying a word of blame or suggesting otherwise, Linda and Cheryl and I, three women worked the evening and through the entire night and the morning doing postcards. We did 66 postcards, and many of those were pre-matched. After a couple hours of sleep, I was woken and sat in a small room, writing at 1/10th your speed for seven straight hours. I wished my arm would numb as it swelled. It took three women over 60 hours of work to send out pre-prepared postcards. Far longer I think that most people take.

And of these postcards and the 54 sent the week before, we will be fortunate to hear from 1 or 2 people – so far I heard nothing from the 54 we sent earlier, and getting 1 or 2 responses (not an actually postcard or letter but even a mention that takes 5 seconds online like ‘got postcard’ is the kind of responses we usually get for 100 postcards).

Whose fault this stellar example of apathy? MINE! I kept pushing the people I loved because I believed that after two thousand, four thousand, five thousand postcards that something would happen. That people would be less scared of me, would realize that I was literally sometimes having two women work on me for 40 minutes to revive me in order to continue to do one postcard, to do YOUR postcard. When I simply didn’t acknowledge the choice that you may not care! That is a choice.

People can choose to be selfish, most do. They can choose to be busy. One thing I learned is NOT choosing is also a choice. So if, for example, the urgent is always there over the important and a loved complains and a person says, “You know I love you” – well how? If the urgent has never been them for years, how? And that is a choice.

But worse, I am not allowing a person to have the knowledge to make a choice. People don’t know how sick I am, and I am very ill. For example, it takes me an average of four weeks of notes and planning to send a package, and that is with Linda or Cheryl helping with wrapping and Cheryl doing the posting. I think that is about 20 times the energy it takes most people. And yet, in the last two weeks I sent out, with Linda and Cheryl as my hands most of the time 31 packages and 32 cards with them. I am GLAD I sent them. I like giving. And I planned it for a long time. I tried to lie, my pride again, and give this illusion, using others work, that I was somehow equal to your energy, your memory, but I am not. Which is why when I hear back from only a few of those send to, it kinda bums me out. I love the giving, I just don’t understand if people hate getting gifts. If they do, tell me.

There are times I try to show you some of the reality and often I hear silence or odd comments. So the fuck what? Did you somehow forget you were mortal? This is bad, yeah, this isn’t how you want to go. But you deny me, and you dehumanize me. I fight to write because someone will need this, I believe that.

Reality: I have more dementia, I have brain damage. At times I am lucid but parts of my brain are destroyed, noticeable to those who know me well. Linda is on welfare and it not only sucks, it endangers my health in ways you can’t imagine.

Example: it costs $30 a month for me to take a shit.


How: I take two mild laxatives for moving my intestinal muscles and light roughage (very light) as grape juice and grapes while at night I have pickles, brine and olive (because I can’t produce intestinal lubricant). When it works, optimal is 80 minutes a day (that is a BIG improvement).

You want to know what taking a shit when you forget the olives is like? Well, first, things don’t move down from your intestines as easy so you might go after 2 days (after all, writing six emails takes your entire half day and leaves you trying to sleep writhing in pain). So imagine the energy of running a marathon (I know, because I did many, many marathons), and that is your six hours up, and all you want to do is sleep but now is when your muscles are relaxed. So you go to the bathroom, and it WILL take 2 hours (that is considered ‘minimal time’) but more likely six to seven hours. Rocking, back and forth, forward and back, you pass out a few times, you drink over a gallon of water, and because you have no lubricant you feel each hard piece of crap coming down each corner spiked like a ninja throwing star. After a few hours, the blood drips out, you would do an enema if it did any good. But if you DO then you would have to start from scratch, wait five days and ‘open the gate’ (get stuff into your lower intestines – imagine the worst cramps for about five to six hours with screaming – it is a large incentive to take a little bleeding,) as the roughage of a piece of undigested…..lettuce stalk, or husk or rice tears a bit of your already wounded lower intestine. After six hours, you are in pain all the time, your anus, your lower intestine and you are bloated because the opening into your colon is swollen shut from the abrasions. So you lie in bed, and pray to sleep and that the drugs work well. And tomorrow you will continue as soon as the swelling goes down. That’s what missing a day is like.

The bathroom is the primary place I read manga. In two days, in a six hour and a three hour stretch in the bathroom, manga is what is readable when rocking (when things are going okay), and there is lubricant, when it gets too bad, I just stare at a picture, hold an ad in my hands and moan deep in my throat. So I might go through 12 manga in that 6-9 hours in the bathroom, or a couple books and 6 or 7 manga – books are for the ‘getting relaxed’, once the pain makes it too hard to think: manga time.

Once I run out of manga, I just have the ads. If I was well enough, I could go to the local bookstore, check the clearance bins, or the library and browse – but I am not well enough, and I overheat, and so I have only online sources and sometimes it makes me feel like beating the computer screen and screaming because…..those are the only choices I have. The wishlist is kind of the ONLY list, unless you have an ambulance to drive me around to libraries (sending me 400 titles I have to look up isn’t as big a favor as you might think as that is a week’s work or more). As Linda says, “the bathroom does things to your mind” – that much pain does things to your mind…..like how dying rather than having an impaction that hurts so bad and yet after an HOUR nothing has changed and facing not just a tomorrow but a 100 tomorrows until you DIE seems too much. Why not die now? That kind of ODD thinking.

So I take the grapes and grape juice and the pickles and olives – though we are now on welfare and just that is $30 a month. Batteries, more containers, cleaners, gatorade, more. As for the manga, well I try to get it cheap when and where I can, good interesting stuff. I spent one of my 10 ‘wake’ periods a week reserving books from the library but often since only one eye works (particularly now after Stroke II), it has to be Teen Fiction, or something simple and riveting and usually those books have a bunch of holds on them (or are in paperback and NOT in the system). I put one our library doesn’t have, ‘Armor’ on the wishlist – I am also looking for a cheaper copy of ‘the body finder’. But yeah, when things go wrong in the intestine department, that is a third of what two days often are like. Then add the time seizures take up, and the paralysis afterward, and the fog, and confusion. Add how long it takes to pee and get up twice, get ready to sleep twice, how long it takes to eat, to be fed if needed, to drink, and I DO drink 8 glasses of water a day.

See, if I don’t otherwise dead white blood cells and yellow and white crap starts coming out of my TEAR DUCTS because without sweating there is no other way to get rid of waste. I have concentrated gunk in my eyes, and tubes of white and yellow squeezed from my tear ducts like toothpaste, falling on my face. I am in pain, my body and arms shaking too hard and blind from the crap in my eyes, the dead protien, the dead white blood cells, to do anything to help myself. Linda does that, like when she wipes my mouth when I can’t swallow my saliva, which happens almost every day. Wipe, wipe, wipe. We go through a lot of paper towels and tissues around here. This is real, this is why I plan fun in advance, WAY in advance.

I have to wade through a lot of pain and planning to have fun, though I try, I try. But you can see now how someone asking me to ‘take pictures of all your books’ or do X or Y or Q is actually quite cruel since while that might be an hour project for you, it is a week’s project for me. My memory is worse. Much. I am thankful t those who email once every few days, just a line or two, so that I have a clue who they are. Linda says it is not Eagle (the animal for ‘April’) and it is not 1009, or 108 but 2010. These numbers mean less and less to me.

These things are why Linda has the power of attorney and mostly she buys things that I work out might help, might lessen the pain, might replace the used postcard stickers, the used greeting cards, something for her to read and unwind from her two jobs, both full time, some DVD for me to read or watch when I am paralyzed or watch when I can’t move, when I am in bed and can’t move.

If you are still here, well, I guess the glamour is gone. I know that many will read but few will want to be part of my life. And yet, that is where you will look back. Some can say, “She was my friend”, some can say, “I was there.” Some will write a nice comment when I die, except that I expressly told Linda to make sure that comments weren’t allowed on that post. Talk to me, not to my dead body.

Want to be part of my life? I want you to! And please, think beyond the ‘reaction’ to the ‘action.’ Sure, people can say, ‘Don’t send me postcards.” – well that’s like telling a person who is bedbound that you won’t bother them by visiting (unless you hate the postcards, in which case, it is just going to depress me but at least it is honest – CRAP timing but honest). Sometimes allowing someone to give IS the gift, and realizing the cost of what giving does to them and respecting that, giving back is also a gift. It is all a choice.

But it is hard. I know, because I have chosen a couple people, people who I feel I NEED to be there for. And yet, it is easy to think of them but do nothing, easy to have problems and seizures and suddenly watch a week (or two or three) go by. So I have to force myself when I think of them to ask Linda to get the phone to call them, to ask Linda to help me sort some DVD’s they might like to watch, some books they might like to read, send some manga they might try, some magazines. I know that a call to them, talking for an hour will use up ½ of my day’s energy, I will lie gasping for hours, and sleep long. But as they fight in their treatment of their disease or condition, when so, so many have left them that I don’t want to be lumped in with those. Call it perverse pride.

In the end, I am sorta simple (and genius complex, hard that). But letters make me happy, small things, knowing you care by picking up cues from the blog. Your letter will be one that usually I can’t read, but can be read to me in bed – it may take you an hour or two and I know that, and I will start planning on sending you something back.

Silence isn’t always golden, since silence while it might mean ‘Wow this is heavy.’ Or ‘I don’t know what to say’ SOUNDS a lot like the silence of the HUNDREDS of others who left, and so (insert your name) will be lumped into ‘dunno, guess they left’ or ‘guess they don’t care’. Care is action. It is for me. So is love.

It is hard to write (because I could not say it, now that I am tired, my mouth doesn’t work so well) that I would like, would enjoy, would BEG for care, for help. I have begged the authorities, the doctors, the doctors above the doctors, the governing body, the complaint department, the appeal department. If you are a GP in Victoria and give a damn about humans, please email me – no need to email me to say your practice is full, and you need to go home on time, we already have a few HUNDRED doctors like that.

I want people to care because caring is good. And if that means going on to care about others, about a cause, even better. I want people to grow. I don’t want people to say, “Oh Elizabeth, without you I wouldn’t have done ….” No, you did X because YOU wanted to, because you were willing to pay the price and because you followed through. Don’t let dreams die because I am dying – I am still planning and dreaming, and I hope so are you.

This is tough stuff. Scary stuff. So what? Face it! You can learn from this, can look at me and see someone scared, someone in pain, someone alone. OR you can run, you can ignore, you can decide this day is boring and wait for another ‘secret shame’ blog, or one on gardens or with pictures. That is the choice. I wrote Zed to be a mirror, and in a way, so is this post. I am sorry that my pride stopped me from saying, “Help me, as a friend, help me and Linda, as a human being who learns through caring.” Forgive me.

4 paragraphs to explain my disease plus: Love a Puffin, Masturbate and living.

I have just finished a blog post on the Postcard Project,in fact there was ANOTHER postcard project blog before that which I kind of forgot to mention, though I think is it a good post.

“To engage, to start a dialogue and get to know someone is a great joy, a great opportunity. I have been given this chance to get to know so many people…

..But I can make you feel a little less lonely, because I care, and I hope it shows, in a clumsy way, in the postcards I send.”

So please, if you want more Elizabeth, head over there and take a read (and a comment). Also, scantily clad Hawaiian girl if that is an incentive, plus lovely goth postcards! Linda has also written part II of the Flowers of Hawaii over at Girl’s Gotta Fly and I know she would LOVE a comment.

Also, I am sorry but the postcards this week were, um, scanty because after posting 94, I kind of used up most of the postage stamps. Oops.

The BIG news is that I have decided not to die. Sorry, you can get your entrance fee at the door. I didn’t say my body is agreeing with me on that one but I am tired of writing about pain. Geez, I am ALWAYS in pain, so unless I have something new to share, we will assume that, and that probably parts of me are falling off or looking odd or blood is coming from somewhere or another.

But, hey, still have decided not to die (screw medicine!). So I will be doing other blog topics. I will still update on health issues and want to talk about what it is like having a ‘bad’ dementia day: that Alzheimer’s, or Parkinson’s experience which frustrates caregivers. I will try to explain from my notes and experience why we cry over your not giving up toast, or cake, when you actually gave it five minutes ago, or why we call you the name of someone who is gone, dead, and how that hurts you but what does it mean for us?

Right now, with Xmas on the way, I am masturbating, oh yes I am. I woke up this morning and thought, “Elizabeth, what gets you horny?” Good thing I have all these art books. Is getting aroused at an anime drawing a good or a bad thing? I think, since I can’t really move around a lot, a good thing. But that will take a bit more time (please continue to masturbate anyway!). I am studying (rub-a-dub!), I am collecting pictures, I am trying to find resources. Yes, we are too sexy for this wheelchair, too sexy for this bath bench, help me undress, oh yes, oh my!

See, even chronically disabled, or those with degenerating conditions can be horny. Stay tuned for blog post.

I realized that some people may not know what I have medically. BEFORE I was ill, I had Marfan’s and P.A.T.’s due to an extra node in my heart. Marfan’s is a genetic bone and muscle condition which makes your muscles stretch as the genetic switch to stop your bones growing doesn’t always work. So I have different sized bones on my body from side to side, and due to my knee bone growing into my kneecap, I had surgery on both knees. I hyperextend, as the muscles are pulled longer than they are supposed to be, this causes muscle pain, and my knees to go backward, and my shoulder to dislocate more often than others.

Then I developed a disease of Central Autonomic Failure. Autonomic Failure is when the things we don’t think about, from pupils dilating to blood pressure to heart beats, to converting oxygen from lungs into the red blood cells doesn’t work, because that part is damaged. I have both Central and Peripheral Autonomic Failure, plus Secondary Raynaud’s (which means my extremities turn funny colors, are cold and for me, not for those with Raynaud’s naturally, I can have veins collapse and start to rot, and require amputation – like Diabetes – this is another reason to exercise rigorously).

I also have progressing Neuropathy, which means there are 5 different types of nerves, and my nerves are being sort of eaten by the body, so I have limited to no feeling from my HEAD to toe. But think of nerves like a giant road system. Just because thousands are destroyed doesn’t mean that a person driving back roads might not find a way to bring a message all the way forward, particularly if hundreds to thousands of cars start out to find a route. This is what happens to me and to some SCI’s who have a partial or a break with some spinal nerves. So sometimes I close a door on my hand and feel…nothing. But other times, my feet, from the cold, or when I break a toe, I get, a second or two later, a flash of pain, and then it sort of dies out, as other messages crowd out the pain message trying to get through such a odd route. I type 5 times slower because the messages to my major muscles are both slow and erratic (taking the scenic trip on the back roads).

Because I have Hypothyroidism from a secondary Autoimmune disease, it is almost certain from my symptoms and visits to three different hospitals that I have AAN, Autoimmune Autonomic Neuropathy of the vascular centered variant. Only four disease have Autonomic Failure as a primary symptom – one is POTS, Postural Orthostatic Hypotention – I have the Hypotention but I don’t have POTS, or MSA (Multiple System Atrophy), the most common of this uncommon disease, and seen mostly in seniors, with three types, one related to Parkinson’s’ (used to be called Shy-Dragers or Parkinson’s Plus). The Hospital in Vancouver confirmed Primary Autonomic Failure, the Specialist Hospital in Washington State confirmed it is not POTS or MSA. The Hospital here confirmed it is vascular in focus (meaning the veins randomly close, and I get a micro stroke called a TIA, or I get a larger one, or my ear drum blows out, or blood doesn’t get to my intestines, the food rots and I have a gastronasty!). Two down, two remain, which leaves Pure Autonomic Failure, and AAN. But Pure Autonomic Failure doesn’t have Neuropathy or Autoimmune Disease: I have both, so does AAN. These are all diseases of exclusion, determined finally in autopsy (meaning there is no, take my blood and see if the water turns blue test - you match the symptoms until nothing else fits). 90% of PAF people get MSA, the average lifespan of MSA is 4 years from onset of first symptom (not diagnosis), the average lifespan of AAN is about half that (no study of AAN has been done because no one can get enough people WITH AAN together and have enough of them live to the end of the study).

There is no way to prevent this disease. It is really rare. It is like winning the lottery, you don't win the lottery by eating green food, or doing pilates, and you don't get this or have this cured by doing any of that other. Medicine has known about this dying of brain disease for 109 years, and so far, the only treatment is a pill for those with MSA-P, that helps 10%, and now IVIG for those with AAN (plus symptom treatments, like beta blockers, oxygen, pain management, synthoid, and other symptoms treatments) IVIG is a possible good thing because IVIG passes the blood brain barrier and kills the auto-immune system of the brain which is attacking the autonomic section. It is not a cure all, it doesn't work for everyone, but it is hope of stability. And the only hope I have right now (medically).

That is what I have, that is why I stop breathing (because the switch that says, ‘breathing is good’ is too weak to work, or the nerves to my diaphragm stop working, or similar issues, like my heart is too erratic to pump blood around), or get very ill, and can’t sweat and have the air conditioner on when it is –5 outside (I do, seriously!) – turns out that masturbating makes blood flow, increases heat. I have no way of dispelling that heat. I am, this morning going, ‘oh my, oh my, my hands are green and oh, oh, oh, I am sooo close, why am I super heating, don’t think of that, think of the sexy, oh yes, so close’ – followed then by, “Oh shit! I am way, way too hot, I need to do something because death by masturbation is not as wondrous as it sounds.”

Yeah, sometimes it is GOOD when workers aren’t here, as what do I say when I have all my tops off, the air conditioner full blast and a care worker walks in, with me saying with a wild eyed expression, “Quick, get a cold cloth, I am masturbating, and it goes well!” So to recap, postcard project, Hawaii Flowers, not going to die, researching desire, masturbation, more masturbation, and what disease I have. That’s it. Have a great day (oh, computer thing on hold for a couple weeks, and I go in for blood work at 7-8 a.m. tomorrow). Oh yeah, and I'm going to live.

Obituary’ or The one left behind: The Booth Gardner visit.

In many movies, I think of Mad Max, or Platoon, where you see a main character lef behind while everyone is leaving, pulling out. They have no choice. There is literally a visual sea of the ‘other’, that destructive force we fear as it seems to know only pain, fear and death, closing in. In Platoon, the character, shot in shoulder, is running with over a hundred enemy soldiers after him. The Huey helicopters, having risen could look down and see him running, running, shot, falling, up and running again for the landing zone.

In the same way in Mad Max films, having used himself as a human decoy, the Mel Gibson character is shown, exhausted waiting as those who have been chasing close in. He looks out, seeing the plane, or convey getting away, and the whole stance says what has been said in so many books and movies: “they aren’t coming back....are they?”

Regarding Booth Gardner. In the reverberations which will continue for some time to come in my life I stand on the edge looking out and know that ‘they’, modern medicine, the advances in science, the doctors and specialist, they aren’t coming back for me.

They have people they can save, and they are going to them.

I never really believed, not REALLY that there wasn’t some cure or specialist out there who could change my condition, they just had to want to. Yet it is always different when you hear from the white coats.

I am sorry.

In going to Booth Gardner I carried your compassion, your best wishes, your donations, your kindness and the best hope of both of us.But before going to Booth Gardner, we made one last attempt to get Vancouver's head neurologist letter which Booth Gardner did NOT have and which neither my previous Victoria neurologist nor my ex GP (Jimmy) could find. It had the nerve conduction tests and other data so we asked the ex-GP's admin worker and suddenly it WAS found, in his file no less (he was away on vacation). We got it the day we left Victoria to go to Booth Gardner.

The letter had in it not only extensive diagnostic information, but an order to begin the IVIG treatment which I had been trying to get for two years, as anecdotally it was one of the few things to stop autonomic failure progression. After the nerve condition the IVIG had been approved.

The letter was a year old.

Last year: last May, the Victoria Neurologist and the GP were instructed to created an autonomic failure baseline and then administer three to six months of IVIG. As this treatment was the best chance for both autoimmune an non-autoimmune diseases of autonomic failure. If autoimmune was discovered, or the baseline showed a slowing, stopping or improvement, then I could continue to another medication or stay with IVIG, depending on results.

This letter was never shown to me. Instead the Victoria Neurologist and my now ex-GP (Jimmy), in daily contact, told me that taking a baseline would NOT lead to treatment (the neurologist said this to my face, it a session we recorded without her knowledge). She had previously told me that the province would NEVER authorize IVIG as my problems were ‘in my head’ and worked to have me put into a locked ward instead. After I made a formal complaint she was removed from the case and the opening for the locked ward disappeared.

My GP, Jimmy, however for the next 11 months, not only had the letter but twice pulled it up on his computer to read sections to me (but never had a copy for us). He also during this period refused to refer or authorize all diagnostic care, all specialist referrals, including the many, many requests for a neurologist. Nor the requests for endrocrinologist and refused to treat the anemia or thyroid, or even test the hormone levels (as the medication required every 6 months for liver function tests).

I now have a GP I have met once, and I need a neurologist referral, a baseline test, and then IVIG treatment. In the Canadian system that amount of referrals will take between 11 and 14 months. Would I already have received IVIG treatment having a neurologist a year ago? Yes, I would have had at least six months of treatment by now.

Even if somehow the treatment could begin tomorrow, I will NEVER regain the nerves that are lost, never be able to leave the house without an oxygen converter as my lungs are failing, I will not have the extensive brain damage reversed, never again the same in reserves nor will I be able to take a normal dump for the rest of my life (oddly rather important: don’t take one for two weeks and see if you agree?). There is a year of permanent nerve damage. Last year, I was one month from my Japan trip, a trip which Linda said a few months ago, simply could NEVER happen again, in my condition.

My GP, the person entrusted for my care, told me I would only receive treatment if a specialist told him what to do. A specialist told him to give me IVIG. He did not. Instead he told me he would only give me treatment if I went to the US for diagnosis. The province felt that I had a serious enough condition to spend $18,000 and perhaps more to TRY and save me. My GP ensured, by not allowing a neurologist referral that no one else would ever see this letter (as if I had a neurologist, the letter would have to be forwarded or they could contact Vancouver themselves).

That was what we read in the Van driving to Booth Gardner the day before. The pictures of me smiling at different races, races I don’t know if I am able to finish THIS year flashed on my screen saver. A year sometimes makes a great deal of difference.

At Booth Gardner, a complete history was taken as well as review of the tests and this ‘new’ letter. Booth Gardner is NOT a center for simply autonomic failure but rather a Parkinson’s center for MSA. What they could tell me is this: I did not have MSA (or a variant they were familiar with). I have central autonomic failure. I also have peripheral autonomic failure. It is not known how that is possible but it the facts. I also do NOT have POTS which is the non-lethal form of central autonomic failure. I also have peripheral neuropathy (progressive) of which there is no understandable connected cause. When asked what could cause such destruction the head Neurologist of the center said, “Heavy Metal poisoning?” (Could you PLEASE stop sending me liquid Mercury cookies!) which is like saying ‘Radiation poisoning’ as both don’t damage only the Axon, they simply warp the DNA, eat the nerves and wreck damage on a level beyond predicting. I have not, to my knowledge, been wearing my Cherynoble earrings.

The Neurologist in BC who saw thousands of people with neurological condition and a few with autonomic failure said it was not DNA related, and unknown if auto-immune related. It could be just ‘one of those diseases’ like Lou Gehrig disease/ALS was until it had a name. Why do I get it? Why me? Who knows? The head of the center which dealt with thousands of people coming with autonomic failure each year could tell me what it was: something which should be impossible – both central and peripheral autonomic failure, much less the peripheral neuropathy. I had the lethal kind of central autonomic failure. Indeed outside of anecdotal evidence that IVIG works on some people (best with those with AAN) the ONLY hope for autonomic failure are those with MSA-P, who have a 5% chance of extending life expectancy. She felt I needed a referral to a specialist to only rare autonomic failure cases and is giving one. I pointed out that at the progression and the types of autonomic failure left, that I was not only terminal, but rapidly terminal. She agreed that ‘those with autonomic failure (of my type) had a shortened life expectancy.” But again emphasized that I did NOT have MSA (or a variant she had seen before in her thousands of cases) and I needed to see an expert in autonomic failure (AAN, is often called MSA because no one has ever heard of it; this is what I have believed I have, however I often use MSA as it is easier to understand. She does NOT know if I have AAN). She also wrote that the anemia and thyroid needed to be dealt with. And this was my diagnosis. My Obituary.

All those words but what does it mean? It means I thought for a day and then cried a lot. It means I spent about $800+ to get the answer. The answer is no. I am terminal. I do not have a form of autonomic failure that has any way to survive or even extend life; except for the faint hope of IVIG, not currently studied in trial as not enough people can be collected or live to the end of trail period (usually 6 months to a year) to have a clinic trial. I am progressing at what appears to be 4-7 times the speed of other people with central autonomic failure. By pure stats, I should be dead. Plus I have peripherial autonomic failure, which is unheard of, but I still have both AND the neuropathy.

What can an autonomic specialist tell me? Maybe that someone else has what I have, or that it IS AAN or something new and they call it MSA-Q or they haven’t and they will want to autopsy me. Or maybe like this visit, they will end up with a list of what they know which still ends with “I just don’t know!”

Medicine isn’t coming back for me.

The question I need to answer is how much more time and energy will I spend, how much more money will I borrow, beg, put Linda into debt in order to find out a bit more about these diseases. I think Linda, Cheryl and others would like to at least a consult with an autonomic specialist. I would like what I fought for, and won, it turns out, a year ago: Treatment.

Was the IVIG withheld by the neurologist out of spite? The same neurologist who ordered another MRI because she said nothing would show up on an MRI but something did, so she ordered that section done AGAIN, and a year later it was determined to be ‘unknown.’? Why, why did my GP do it? Out of dislike? It is hard to believe that he would complain about needing guidance when he had it, that he would force us to spend money we didn’t have, money I had to beg publically for in order to get an opinion in the USA only from …confusion?

A year without treatment when I could have gotten better. It rings around in my head like pealing of the bells.

I asked Linda the point of chasing this specialist, then the Chicago program, then the Vanderbilt? She said, maybe for another woman, another generation. I said, with tears on my face, “It’s been over 100 years and they haven’t found anything YET.”

Yesterday was somewhat dodgy, hands black from lack of oxygen, arms and legs deep purple, much like this afternoon: TIA’s, stopped breathing, the usual. I have decided that if there is a visit to an autonomic specialist I will go, but that I want to try and set up the IVIG treatment as soon as possible, within six months if that is possible, even if I have to go to the newspapers. I want to gather reserves as much as I can and enjoy life while I have it. I know that every day, and every breath is borrowed time, that there isn’t any magic cure, or hope. And yet, I do have hope; hope that my life will be better. That I will be able to say “no” to the medicos, because they either accommodate me, or they just wait. Because either I live this life my way, or lose that chance forever.

Like the last 24 hours, there will be more depression, crying, and Linda and I holding each other. (3) But I am going on Friday to Sakura-con, if I am strong enough: I want to buy some art books for the blog. I want to buy some cat ears to send as presents. I bought some presents today in town to send out and when the total came up went there was a, “Wha?” moment. But it is okay, because this might not be what I originally sold my books for but this is who I am.

“Why,” asked the salesperson, “would you send presents to people you don’t even know, or have never met?”

I asked her if she remembered what it was like getting a surprise present as a child. She did. I said that many of the presents were FOR children and some were to help people remember that feeling of getting a present; the child-like wonder and anticipation.

This has been the worst couple of days as I can remember. And there is a lot more staring into space ahead. It is one thing to sort of know that you have a rather horrid death ahead and another thing to KNOW. To know that, no, they aren’t coming back to help or save you and from now on it will likely be more difficult, more painful, and yes, the road that leads to one end.
I AM trying to notice the flowers and the sunshine, and not just that ROAD, that destination. I got a bustier and thong underwear for $17 today! I have an outfit for sakura-con, and I want, I really, really want this to just be a fun time. To be a time I DO remember, one of the good memories of this summer. Since I am Not Dead Yet, and plan to stay that way (your not sending me heavy metal or radioactive cookies would HELP in that!). As long as I breath, I want to LIVE. Okay, I know what I have lost, I know what I am losing; now it is up to me to figure out how to make a life where I gain something, anything: from joy, from enjoyment, from just a smile.

My fucking ex-GP!!! Now there is a man who needs a postcard (and his license pulled, and a cell in the Hague for ‘Crimes Against Humanity’). Sorry, not quite all adjusted yet.

Forgetting and regressing: tastes of my life

Important things first: The kitty will be called Miko so I can a personal shrine maiden
....or Indy so I can remember that I’m not dead yet. Sorry, still split on names but I am sure this will resolve itself soon. Second thing is that after seeing me in my fox eared hat Linda immediately demanded that she be able to wear it. She is very much like a sibling sometimes and I am surprised she even gave it back. But it suits her so maybe we will get a cat eared one for her.

Next important thing is that I am writing this while wearing a corset. A black corset with lace and black ribbons down the back. Will anyone see me wearing this? No. But I have decided that I, not my disease will start to dictate some things. I think I have to thank Abi for mentioning she had a corset, of which I want a picture (purple corset?) of her in it. And it helped me decide, “I will wear a corset today; in fact tomorrow when I go out to the pub I will wear a corset and a skirt or maybe I will wear something else but I am going to dress up!”

Instead of just transferring out of bed, I’m going to reclaim sexual playfulness, my whimsy - I want it all (take a note!). Yes it will take energy but with Linda to help, and Cheryl it is possible, and that is what I am about, right? The possible. I live with the sword above my head on thread. Maybe my foot will stop hurting or the other will go back to normal size if the letter sent gets read and I get a better doctor. But right now, I am living. Living. Not Dead. And I plan on doing that for some time. And I want to thank Frida, Cath, Tom, TJ, Raccoon, Wendryn, Abi, Lene, Robin, Anna, and so many other people because…..the plan is starting to work. I am looking forward to Manga. Indeed, I ordered some with gift certificates last night so that they would arrive in TWO Fridays from now. I want to look forward to every Saturday when the post comes.

I am READING. Do you know how long it has been since I have read? I am reading a manga series called Suzuka about track and a romance triangle on the track team because of my memory regression, I remember my track training for the hurdles, the hours spent in trying to get my lag leg to go lower, to just clear the hurdles. The running sprints until you vomit. The high jump, over and over. That is one HARD piece of metal to land on. So a romance around a female high jumper (which I did) and a male 100 yard sprinter (which I did not, I did 220, 440 and 110 hurdles) is right up my alley (plus the team manager who gets people towels and is after the guy). Reading is fun. I think I missed it. I will try to get a book or two of the series a week.

There is also, to get a bit biological, two different pro-biotics on the wishlist, as we have figured out that I have absolutely no natural fauna in my intestines. So the more pro-biotics we have, the more we can try to restart that and the more I can absorb different minerals and vitamins from my food, which I haven’t been. That means more energy. Am I going to beat this disease? Dunno, but I’m not waiting around for some doctor who won’t order an X-ray. With the help of many, many people I am starting to look ahead. And I am entering the Times Colonist 10K that is in six to seven weeks. I would like to find another race before that, as I am already in training. That 10K is part of the B.C. Race Series and will give me a ranking, provincially and nationally, if I want to go to other races in the series. Will I pass out? Yeah. Will I make the finish? Wait and see. What I will say is that the head coach of wheelchair racing will be there to race, and it will be 17 years of racing for him. He is faster than me by 8-9 minutes. I am going to try and pass him. I am going to try and finish before him. That’s right, I am not just participating, I am RACING.

Hard to believe it but yes, Elizabeth McClung has a race, like competition, and has an opponent and almost has a plan. Okay, yes he is a male and has been doing this well, almost decades longer than me. He has a better racing chair than me, he has better racing gloves than me, he has better form than me, and he won’t have to be on oxygen or carry oxygen canisters. That is the down side, but my advantages are…..um……I can work on my form AND I will be on oxygen, and I will only be on oxygen for the time it took him to finish the course last year, 48 minutes. Yeah, is someone who is terminal and stops breathing and has heart problems taking gambles with oxygen a good idea? No, but it is a very Elizabeth idea. I am serious. I race, I go, and have one good hour, that is all I need, one good hour to live my life. I am willing to work toward that.

Most people can’t understand the complexity and personal devastation of this disease. I am now advanced MS in the morning and progressed ALS at night. That’s just the physical. It is my mind, ripped slowly to pieces that bothers me the most. I say that I can’t remember beyond 24 hour or 48 hours with emotional exceptions and people say, “Oh, wow, that’s me on a good day.” Really? Do you know the name of your partner or do you say, “Lady, why am I in this bed?” Do you remember the names of your children, your last vacation, you appointment this week, your appointment last week, the last time you had sex, the last time you had a romantic evening, the person you fell in love with, and how that happened? Do you know what day it is, what month, what year? Okay, now take all that away, take everything away and you don’t know what country or city you are in and try to go get a coffee. First, you don’t know where money is kept, but say you have some in the wheelchair, you don’t know why you are in a wheelchair but you body seems to know. They ask your name, and you realize you don’t know what your middle name is. You stutter out your name and they start asking about loyalty cards and people are staring and you realize you don’t have a clue what they are on about, or what just happened to coffee? You have never heard of this chain, STAR buck – is it named after a horse or a spaceship? You just want to be home. But when you are there a total stranger comes in and says your name. You ask what they are doing? You want to dial the police. They say they come every week to get you lunch. They look toward the kitchen so you can tell they have been here before, so you let them stay. You ask them questions about what they are doing and how long they are staying and they laugh and say you ask the same questions every week. The agency won’t let you take pictures of the workers so that you have an idea who might come through that door. They scare you because they know so much about you that even you don’t know.

That is an iota of what is like, not forgotten keys but not knowing how to get to the bathroom in your own apartment because you don’t recognize the apartment as yours and you are too scared to open doors randomly. It is about having a conversation or sending an email you spent an hour on only to be told you did that three days ago. It is about buying things over and over and over.

So because you have an extraordinary IQ, you can process information quickly, and you take every single eye and body cue to play along. A person comes in and knows where your phone is, so they must be home care. They know your name and you apologize and ask theirs, and did that problem get resolved? (Everyone has a problem) So they start talking about their daughter, and suddenly you know something, and they think you remember. And that is how you get by, spending all your time either taking cues or reminding yourself EVERY day of what you have to remember the next day, leaving lists, saying things over and over, in order to remember.

Then there is regression. Which now seems permanent. Whatever age I am biologically, that is not where I am getting my language, or my memory. Some days I am 20, some days I am 23, sometimes 18, I am fresh in the world. I have all sorts of dreams and hopes and plans I want to try out. Linda talks about a class and I tell her that I want to take pole dancing, and laugh about how my parents would freak, so let’s do it! I want to take a degree to be a lawyer. I want to plan a trip to go on a Safari, and then maybe I could go back to California and hike the San Gabriels, see all the white tailed deer up there. My life is ahead of me, my choices ahead of me. I want to get up tomorrow and go up to uni and see what clubs are interesting, maybe I will join the frisbee golf group, only there are WAY too many guys with beards in that group. I want to do something fun, I want to learn juggling from some guy and have him try to pick me up and then leave with my girlfriend. I need to get back on my jogging schedule, because there is a marathon coming up….what city are we in again? Oh, we can do the Seattle marathon then. And these are the memories I know, the running, the practice. I like reading manga, I want to work in a book store, that would be cool, wouldn’t it, then I could buy it at discount or maybe read it for free. I can do that, work part time in the book store while I go to uni for my law degree, I mean I aced my first degree and I was invited to join the debate team. These are my memories, these are my words, this happens not once but multiple times a day.

The answer is always the same. You can’t, I’m sorry sweetie but you can’t, you did your degrees and now you are very sick. “Like how sick, like something from university, a bad flu?”

Like dying.

What?

Like dying. And she tells me and I say, no, no, I’m going to go to law school, and I’m crying and I’m going to campus to find some friends and she says that no, I am too weak for that. And I cry and tell her it is the mono or something like that and she tells me, again, almost every day that I can’t, remember, I can’t. Because I’m not 21, because I’m not 19, because I’m not starting my life with all sorts of choices ahead of me, I am finishing, and just hanging on. And please calm down or it will trigger a seizure. “A seizure? I don’t have seizures?” You do now sweetie. And please, you don’t want one.

Virtually every day, sometimes several times a day. For Linda it must be hell, but for me? I had every dream, every future that I had ripped away. I was looking forward to the new semester, to pole dancing class to having FUN, come on, you are only 21 once! Only now I’m not? And all that is gone, and I can’t get a job so I can have fun? And I am dying? And I have seizures, and by this time my speech is going, and my eyes widen in horror as my speech becomes slurred to the point of mush. And Linda lifts me, Linda LIFTS ME? She lifts me into a wheelchair and pushes me to the bed. And I am not going to take a year off and travel the world, or go to Australia on a six month work visa, or head out and apply around town, because I am in a wheelchair and there in front of me is a hospital bed. And THIS is my life. THIS.I try not to cry but the pain and the difference between what my mind tells me is possible and what my body is saying, what is in front of me is too much.

NO, No, no, I AM 21! I am 19! I am 23! I have choices, I have to go on the skiing trip this month and do the jumps and scare myself and everyone else! Not at ALL like last year when I ended up at the bottom of the slope with the "Caution Hazard!" sign wrapped around me! I am not this person being lifted into a hospital bed. That’s not me, it’s not me. I can run.....why can’t they see? I can run. They say I run like a gazelle.

Everything I know is fracturing under me, like ice cracking, showing the icy water beneath.
That describes a pretty good day. This blog is the best four hours of 48 to 64 hours. There are all sorts of hell.

Right now, writing this, I think I am probably 25 to 27, I know I am not 21 but I have no idea what age I am. I know I am in Victoria but most things Linda talks about I don’t remember. I can tell they are important to her but I can’t remember, I can’t. I remember I used to try until my brain exploded. Now I just smile that sad smile which means, that she is talking to the empty shell. Sometimes I regress to 7 or 5 and that isn’t good, or 12. 12 means at least communication. Even if there is a lot of pouting. Sometimes it is 4 or 5 and I go around untying everything in sight, every shoelace is untied, and I giggle all the time. I don’t think I’ve gotten to the point where I flush toilet paper, but I am sure I will. That is just part of this disease. The chance to talk to ME, to even part of me, the me who can recognize from the bookshelves that this was a pretty damn smart person. Even if I can’t feel anything about these books, they are very interesting and odd, from 17th century chapbooks and Babylonian dictionaries to books of poisons. So talking to the me that can recognize that I am probably not 25 is fortunate, as I won’t be here for long. Hard to know how long. And 25 is a LOT less emotional than 19.
I don’t know if that helps you understand what is happening to me, or if you just find it amusing. It isn’t amusing when someone comes in and tells you everything you hope and dream and believe in, and are hoping for in the future is a LIE, because what you feel and think is a LIE. Because you are dying and now it is time to go to your hospital bed, and you try to protest and you can’t speak, and you are too weak to move. And you try to tell them, no, that isn’t true! How can all that I think be a lie, the vacation in spring break, the job at the university bookstore, the class paper coming up, how can that be a lie? And that is replaced with the knowledge which drips down like acid that you are dying, that will die, you will die soon. And that none of the things you had planned in your brain will happen. All of your hopes and choices are gone, that you are going to die, and this is just part of your brain dying.

I hope that helps. Parts of the brain haven't stopped dying, or haven't yet. I try with the parts I have when I am connected to keep challenging myself mentally. I am trying to create new brain connections with reading. I have even picked out some books with WORDS to read. And Linda is challenging herself too; she has chosen a book on care-giving highly recommended on the wishlist. Also after I pestered her to have some FUN time, she put on all the romances from Flipside she hasn’t read yet (flipside is a funny, 21st century romance with independent women and gay side characters – 1 cent plus postage). As for me, the first four books I want to try reading are on the wishlist: Gosick (Conan Doyle style mystery with goth girl detective), Be with You and Ballad of the Shinigami vol 1 & 2. The last three are about death, and Shinigami is about how Momo, a girl with a cat who helps people move on. While Be with You is about what death means for those who die and those left behind. The four are on the wishlist and all qualify for 4 books for the price of three for free shipping. If anyone wants to get me a gift, this is what I would like: These four books so I can learn to read, and to learn how other people deal with dying. If not, that is okay too, I will find a way. (oh, yes, Linda learned early on that when I regress to 10 and have no sense of money that using her Visa to buy a dozen plushies on Amazon is a good reason to hide the Visa!)

The problem is that not even Linda can accept the disease, and I can’t either. I force myself harder and harder to work; because I have less and less time when I have a workable mind. I WANT e-friends. But I am chasing a life, that isn’t mine anymore. Yes, I am going to race, but not if I can’t learn how to sit and read, or sit and watch TV or roll to the park and relax in the sun. I am not 21 or 23 and I don’t have that energy, no matter what my mind says. I need to learn how to have fun as ME, not chasing something I no longer can be.

My new wheelchair arrives next week. I will be embarrassed to take it outside. While I am too weak to push my manual myself, it seems like giving in. I already have to give in and give up dreams every day. But I will, because I have too. That is how I fight now, by forcing myself to take it, and to go on.
Like all medical stuff we got hit with a big bill, as the ramp to get it into our van isn’t covered, and geez are those things expensive (ouch!). Our medical fund has taken a hit between that, the non covered medicine, and the pro-biotics. It turns out that dying, or rather NOT dying is an expensive business. Almost daily expensive. Particularly the oxygen and the full EMT station we have here at home (once the heart paddles arrive we will have the same medicine and equipment as a hospital too, except IV’s and blood transfusions).

But I am going in the 10K, and other races, and go to Hawaii. So next week, I am selling my bike. My custom make extra large frame and extra spokes and triple bunted touring bike (the frame is 27 inches, you can’t ride it if you are under 6’2”). So if you are interested let me know. Same with my skis. While my brain tells me I CAN ride my bike, the other part tells me that no, I have limited time and if I want to have dreams, I need to do what I must to fulfill them, NOW.

There is no doubt about the dying, and I don’t determine that or the regressions, I have no control over that. I do have control over the race and the training and wearing a corset even though I am staying inside today because I am a still a sexy wild woman. And Linda will see it. If you get what I mean. This is what I am after four days of being sick and having a fever. Don’t like it? I’ll race you? Oh, you are able bodied, I’ll STILL race you! I may have the strength of a kitten but I got my attitude back, at least off and on. Thanks to everyone who worked with me to help me get that. I will wear a corset tomorrow, and I will go out. Because tomorrow may be the day I die, but if not, I am looking forward to the manga coming, and starting to read books with all words again. And that was a group effort.