“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.