Thursday, June 03, 2010

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… 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.


JaneB said...

Thank you for your honesty.

I'm here, reading, trying to listen to what you say and learn from your journey, caring about you and thinking of you when you don't write... trying NOT to imagine what it's like to be you because I'm scared to go to that place in my imagination, it is the stuff of nightmares made real and I can't even cope with reading many detective stories, they're too scary.

It's hard to know what to say, to not dump garbage on you but also to not shut you out and write platitudes... but I pledge to try and keep trying.

wendryn said...

Oh dear. I knew it was bad; I didn't know it was this bad.

You don't have to be super-Beth or EFM. You are Beth, and loved for who you are now, today.

I'm sorry to hear about the stroke.

I'll keep doing what I'm doing as long as you are around. I'm not going anywhere. Keep dreaming, my dear. So will I. *hugs*

FridaWrites said...

You don't need to apologize for your limits--I also don't feel that you've been dishonest with us. We know how much you push yourself--from seeing my own limits (my shoulders are screaming right now from typing, or the cost of getting dressed each day), I know it's magnitudes more difficult for you to accomplish what you do.

Finding the balance between rest and communication/action is Herculean. Maybe there's not a balance and we're just teetering there imperiled either way--sliding on a board towards destruction of physical health if we do to much, toward spiritual/emotional health if resting so much that we can't participate in the world around us as we'd like.

One of the most difficult parts of my becoming ill was meeting limitations that kept me from giving to others, volunteering, or giving my work my all. One of the several reasons I quit work--because that had to be everything to do it, at a cost to my children.

You are making a difference, to me, to others. But we know that you care--if you have to demonstrate it less often, we still feel it. Even if you did not give to us at all because of your health and finances, we would know it. I suspect that you have not always been the recipient of spontaneous and sweet gifts and you don't want others to feel that. But we wouldn't feel that with you to love us--even if you can't email us individually.

I am going to a used bookstore this weekend--my son wants to learn Latin and my daughter needs a book for Academic Pentathlon. I'll see if I can pick up some things for you to look at too. I'll do part of your library visit. I feel like you need more in-person visitors for brief respites when your stomach's not hurting and wish I were near to offer that.

Kate J said...

Beth, I just got back from a short time off the grid, and found a really lovely postcard from you in my mailbox... then checked your blog and read THIS!
I am so very, very sorry, that things are going so very badly for you (that sounds so trite but I just don't know what else to say... there is nothing I can say, NOTHING I have the words for. I cannot even imagine your suffering, and your strength too... because you are SO strong, Beth, it shines through everything you write.
I know things must be really bad when you don't post any pictures, because, I guess, it takes so much energy and time to do it, energy and time that you just don't have.
I don't see any way that I can be part of your life, not really - blogging is no substitute for the real thing - because I am thousands of miles away. I just remember back to that afternoon in Victoria, when you were feeding the squirrels on a hot afternoon in the park, and planning your Hawaii trip, and I was able to share just a hour or so with you and Linda. Just before I got onto a plane and headed back to Wales...
Thinking of you
Love & peace

Rose said...

Thank you for writing, for caring, for trying to do good, for spending so much of yourself in trying to make things better for other people. You give me hope in the world, even as I want to cry at the thought of how much you have to go through, and how little help you get.

I wish there was more I can do, but I've gotten you some things off your wishlist - I know you got the earplugs, I got a lovely note from you and Linda back, and there are some other things that I think are due to arrive later in the month. I'm in the middle of writing a reply to your letter.

I'm sorry I don't comment more. It is lazy of me, and I will try to kick myself into doing so, even if I don't know what to say.

*sends virtual hugs*

Rose xxx

SharonMV said...

Dear Beth,
I won't let my dreams die. I will stay with you. I want to be part of your life, need to be. I wish I could be there to help take care of you. Am I very selfish if I say I want postcards?

I am sad that it takes me so long to get a package together for you & to get it sent. It takes me a lot of concentration to write a letter. I have a piece of stationary all ready & decorated with my stash of small art projects in progress which I keep on the bed (yes, actually on the bed - a pile of art supplies & pieces of projects!). I will try to write more often.

I can't really express the grief & pain I feel for you - that you've had another stroke. The pain & losses are hard for me to read about - I can only have an inkling of what it is like for you. Thank you for writing about it. I want to hear it even if is bad. I know the desire of trying to be there for other people, to be what they want you to be. but even late, when you try to stop doing that, as you say, people don't understand that you've gotten worse, that every single day the pain & illness go on even when they aren't there. And also most people don't want to hear the worst, the truth, the daily battles. Even when you try to tell them about it, they "won't" hear you. But I will. I will listen, I will read & I will try to understand. And I will still love you.


yanub said...

People don't email you? I am genuinely surprised. Well, I will keep emailing you, though, like I have told you, the next few weeks will be hard. It might drop to only once a week. But then, it should improve fast mid-July. Have Linda put it on your calendar so you will know that I will return to my sort-of regularity then, OK?

Linda McClung said...

Part 1


Thank you for writing this blog. I know it has taken about a week to write, using up a lot of your energy. You shared some things which I think would be difficult to admit and exposed yourself to all kinds of responses – some possibly very hurtful.

“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 have found that asking for help is one of the most difficult things to do. I see trying to please everyone as an impossible task – one which is doomed to fail as we are not superhuman. With the strength of your willpower, if anyone could do it, it would be you. But I can see it has been killing you to try to be that person. I don’t think you need to apologize, I am relieved to see you realize you can’t be EFM.

“People think if they work in care services that they ‘care’.” Yeah, this one is a tough one. As your partner I care about you but sometimes as a care giver I’m so busy doing the tasks that the caring becomes secondary. Sometimes the caring isn’t there at all. (Usually when I’m overtired and need a respite or am dealing with my own stresses.) It’s tough, when it’s someone you love. It is even tougher to consistently show you care when it is an acquaintance or friend. The analogy of the shut-ins at church is a good one. I was always surprised how few people visited them. Even me, I’d try to visit once a month but sometimes other things would seem more urgent or important. I think I should have sacrificed more – especially know that I understand better what it means to be unable to get out, to be alone.

I often feel like an enabler when it comes to postcards and gifts –and not in a positive way. Take, for example, this weekend. We had worked most of the night doing matching. Around 5am we got to the point where we could start stamping. At that point you became unconscious. Normally we can get you functioning again after about 5-10 minutes. This time it took about an hour. I told Cheryl that we should just get you to bed when you’re alert and able to move. But each time you came around you reached out your hand to the stamping table and slurred “stamp, stamp”. I was torn because the caregiver in me wanted you to rest, but the spouse in me knew how much of a failure you would feel if the postcards weren’t done and didn’t go out. So in the end we stamped for another 3 hours. Had less than four hours sleep and then you wrote the cards for another 7 hours. When you talk about needing 40% just to survive, I think you were around 20%. At the end you were exhausted, in incredible pain and not really functional. And I, I felt angry at myself and guilty for not finding a way to say STOP and finding a way to help you see that it was okay to not send out the postcards.

Linda McClung said...

Part 2

“There is a LARGE group of people who want to act as if the person is exactly the same…others see the dying as ‘The Confessor’”. Both of these actions really make me mad when they happen to you. Someone expecting you to spend hours on a task in order for them to take 5 minutes to decide whether they want to buy a few shitajiki boards - they just don’t get it. And the people who dump all their baggage on you… especially if it’s about finances, sex or relationship problems. I think they may have the best of intentions – sharing their lives with you so you are not alone. But you can’t handle the burden. I sometimes want to shake them until they realize that you are unwell, you can’t spend an hour or two to respond to each email, and sometimes the Beth opening up the email is a 6-year old girl. Would they honestly tell a 6-year old their woes if they were sitting across from them?

There’s so much more to respond to in this blog, but I’ll finish with this…

“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 truly makes me happy when someone sends you a letter or a little gift to show they care about you. The emotions well up and I think how special that person is to help bring a smile to your face and a few minutes of respite to your life. Those are true caring friends – the few who send a card every week or two or regularly send you a $10 amazon gift certificate so that you have choices about what manga to buy or to help you save up to buy a DVD. They are the people I would love to meet in person and give them a big hug and show them how much of a difference their actions made.

Alex M. said...

My gosh, Elisabeth. It breaks my heart that you are suffering so. I know I don't post often, but I check in on you all the time and am highly concerned about how you are feeling. You are loved, woman, and I wish I could be there in person for you. Hugs.

Veralidaine said...

Beth--we talk, I heard from you last night, and I was relieved because honestly after the last post with music I was checking the blog for your death post. I say that because I know you want honesty from yourself and everyone around you, and that is honesty. I don't want you to be in pain and out of energy because of an email to me or a postcard sent, but I do worry every day that I see no sign that you are still alive, on the blog or wherever else.

I hope it is not hurting you when I do talk about hard things in my own life; it is not dumping on you, it is my desire to share as much with you as you do with me. If it upsets you I will stop mentioning bad news and we can just talk about manga or TV series if you like. The last thing I want is to make your life more difficult.

I am sorry that your health is far worse than you had let on. I wish I was close enough to come to visit in person. I think that you know, even with memory damage, that I consider you family and I will care about you until the end. I may not be very good at always getting back to you right away, and I may not always be able to send gifts (though I try regularly to do so) but you know that I will never reject you for being sick or being a different Beth than I have known. And I appreciate that you will never reject me for putting my foot in my mouth about something or not knowing how to respond to something or not returning an email fast enough--you understand as few do that a healthy body doesn't always mean that what is inside can do the same things in the same time frame as others.

As Jane said, it is not easy. I don't always know how to respond without seeming either to be brushing things off or making them worse. If I were close enough there would be times I think when sitting quietly in the same room and being there would be the best way to show caring, without trying to find words for things that language is insufficient to describe, without trying to relate to experiences that honestly I pray I will never have, ones I wouldn't wish on my worst enemy. But there is no "sitting quietly beside the bed" in an email, so I try, and I say things that come across badly sometimes I am sure, and you are kind enough not to tell me when I have done that.

I will keep being here.

Lene Andersen said...

I'm here. I'm not going anywhere. I can't physically be as present as I was and want to be - my computer capacity is highly unpredictable. But I'm here, for what it's worth.

I've always thought that EFM was about doing the hard thing and there's no harder lesson to learn than the imperative to take care of yourself first and to swallow your pride because there's a point where your pride only hurts you. And you did that reluctantly, but gracefully and honestly. You are an amazing woman.

cheryl g said...

It takes great strength to acknowledge that you need help, that you can’t go on as you always have. Your ability to look at your life honestly is something I admire. Your willingness to open yourself, to share the good and the bad, to risk is humbling.

“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 also want to believe in that world. I think it is what has drawn me into a career where I serve others, whether that was as a ranger - educating, entertaining and rescuing as needed or whether that is now when I work to make sure everyone’s pay is going through with no problems. It is what led me to the medical profession first and what drove me out of it. I couldn’t stomach an education system that trained automatons and stressed distance from patients. Just deal with your inch and move them along. It felt wrong to me.

I apologize for not working harder to keep you from risking yourself so much. I have enabled you at times when I really needed to be telling you “No, you need to rest and care for you…” This past weekend was a prime example of that. To avoid the disappointment for you of not getting the postcards and packages out I didn’t speak up and say “it is too much, you need rest, we need rest, we can do the others later”. I apologize for that. I apologize for forgetting that many times it is child Beth and we grown ups need to step in and say no for her own good.

You are right… it is tough stuff and scary stuff. I can promise that I am not leaving. I will still be here every inch of the journey.

Lorna, Bob and Liam said...

Beth, you are an exceptional person. Not because of your illness, or in spite of your illness, just... because that's who you are.

Not all of us are exceptional. We can't claim to understand what your life is, now - and yet fear that to admit this is to open ourselves to accusations of shutting you out, or living in denial of our current/potential/future agonies.

I'm sorry that more folks haven't been unselfish, or empathetic, or caring. Or that you are sometimes greeted with silence, or odd comments. All I can say is that if at times - most of the time, probably - we don't give you what you need, it isn't for lack of caring or desire. In spite of distance, our own disabilities (or abilities), our own frailties and failings, we do come here and read you and try to hold you in our hearts and minds.

We do care for you, love you. We try to listen with everything we are. We don't want you to be so alone, we don't want you to hurt so much, we don't want you to feel you have "failed." You have unflinchingly shared yourself with us, and if we don't have as much to share with you, well, we'll keep honoring your efforts by trying.

Much love as always to both you and Linda.

Lorna, Bob and Liam

Jordan said...

Say not that you lied; say only that you tried.

You tried to be something or someone for people, for reasons you have laid bare to us. But even if you had not spoken of your reasons, blame would be the farthest thing from my mind.

It is tempting to say that only consequences matter, but I stubbornly and sentimentally consider intent as well as consequence. In addition: ignorance is bliss -- if you had not told me you had "lied," I would not have known, and would have been content thinking you were NOT pushing your reserves (little did I know!). Lastly, there are far worse things than lying -- at least in my book. To me, the fact that you might have injured yourself on my account is far more tragic than a mere lie!

Instead of waiting until you are dead (at which point you will be unable to make use of it), I will write a nice thing about you now: I sent you my worries because I saw wisdom in you, not because you were a sponge for them; and your responses, which were indeed wise and very much not what I wanted to hear, toughened me. I am stronger for knowing you, and it is my great regret that I feel I have contributed little of value in return.

If there is anything I may provide, I but await your word.

Aviva said...

Oh, Beth!

I didn't know how bad it was. I probably still don't know how bad it is. I cried reading this post. Which is good, because it's all too easy to get caught up in my own troubles when they are minor in comparison.

I actually dropped an envelope for you off at the post office on Sunday, although with Memorial Day it won't have been postmarked until Tuesday. I hope it arrives for you soon.

I think of you all the time. I don't manage to read blogs as regularly as I'd like, so I tend to play catch up a lot, and I'm sorry I often don't know what to say except I'm here, and I'm reading, and I care about you and Linda and Cheryl.

And you do inspire me to do things that are hard, to push back on my limits and find out what I'm really capable of. Yes, they're the things *I* want to do, and I pay the price when I overdo things (I'm still desperately trying to recover from that trip to Disneyland in April.), but without the example you (and others in the online chronic illness community) demonstrate, I think I'd be giving up and missing out on more than is absolutely necessary. So thank you.


Penelope said...

I have probably dozen of comments I've written to you (not on this post, but on past ones), but never finished, so I'm going to make sure to finish this one.

I think most of us who are long time readers (I've been reading consistently for about 3 years and went back and read all the old posts when I first started reading), don't at all feel lied to about how you're doing because we're aware that what we see in the blog is the culmination of the good moments and days, when you can work on writing.

I echo what JaneB said about trying to figure out the difference between dumping garbage on you and sending you a worthwhile comment or e-mail. I think I just need to stop worrying about it and just write.

Anyway, I just wanted to let you know that there are people out there who do come here to read every day (whether there's a post or not) and that we care about you as you are, not for some effort to be EFM or superwoman.

I'm going to make sure to do better at communicating with you at all because even when I've just been a silent reader with the 1/2 finished comments, you've been important to me just for being you.

Elizabeth McClung said...

Okay, went boxing, so, um, OW! OW! OW! But you know now that my entire body isn't shaking with the pain I can type (that shaking thing only lasts for like two days off and on, but the first 6 hours is pretty bad). But I sweat, and that helps me heal and helps my autonomic system.

Writing a 1,000 word essay on: how painful are your bowels? - sort of a 'what you did over summer?' assignment. I was talking today about times for the bowels to a worker and suddenly we are on prolapsed intestines and we both just shuddered and decided that was not the image we wanted at that moment.

Janeb: Thanks, to be honest, I don't think I could imagine a character, as a writer, or, as I see horror films I'm like "Oh, that's last week, oh yeah, the blood spray, that was a while ago, no wait, was that Monday? Oh yeah, and that, I think the doctors still want to stick those long steel needles in for some reason?" - I watch horror films because I realize that most of the time, people can't even imagine what a person can live with, so horror in a film is often a step or two up from where I am - I mean Stephen King's Thinner - geez, that happened, I think 2 years ago, we worked around it.

I think I really don't want to be alone, and I thought if I told people how it was, what life was like, instead of being like some wierd chirpy gopher popping up every 2-3 days, no one would want to be within 20 feet of me (you know, in case I blow, and the splatter effect).

No, I just want you. That's what I treasure most, is being able to communicate with anyone. It is just easy becuase I am open to be open and I think some people have worries and problems burning in them. And I wanted to be there to listen and help. And I still do. Except sometimes I am 5 or 12, or 15 mentally, or I am squinting out of one eye, and trying to see - so when I lie about how I am, how can you know , it isn't fair to you.

This is a real problem for me though, I am scripting out a book and trying to find a character which is gritty, you know, something that would give me nightmares, is hard - Since right now, one of the combo of the two main characters is a woman who lives in the subway tunnels but has double above the knee amputations. But since she is so strong in body she isn't sad or anything but kind of like an action heroine! Since her weight and the nature of where she crawls makes most prostethics useless (plus you have to have them reajusted every 9-12 months and she REALLY doesn't like the up-world - but she climbs like a dream). So that is the 'normal' character, and I have to make 'bad guys' who are scary, except my 'good guys' are also people who are considered scary and people to avoid, not even look at by most of society. It is an odd view, but not when I check to see how much parts of my body have rotted recently (that's important to check, by the by).

Wendryn: Sorry, yeah, I don't think they will let me in the glider program, which sucks - and I missed the TC 10K because when everyone is positive it will kill me, then I need to find another race. Thank you. I am pretty awkward at being loved and making sure the other person gets that I love them as well. I hope I haven't screwed that up too much.

I am going to go to bed (now) and the woods (later) - not sure how later but later. The woods, I will take a camera! I am alive now, this day, and maybe I can use it to get strength to go out in a day or two. But yeah, I've been tempted to score some drugs, can I buy an illegal GP? Oh patches? Wow, I would LOVE pain patches.

Baba Yaga said...


Easiest reaction: my lord, what it must have cost you, *just physically* to get that post out.

Emotionally? Yea, even more.

I think you've told us straight truth many times. If there was glamour left - well, perhaps you need a little glamour. There was quite enough stark truth to counterbalance it.

No, many people don't/ can't/ won't care. You can't force that on the world. But I'm a firm believer in spreading ripples, in incremental effects. You've changed the way at least a handful of regulars understand, and that change will spread...

You've reminded me of the power of a postcard, which may or may not help the handful of people in my extended postcard project.

I daresay it is hubris to think one can change the world. But if we don't think so, we do nothing.

And still, the three of you stay up all night and do postcards. I think you're collectively heroic, insane, and wonderful. And insane. Remember that you need that %, not n-5%, please?

Send postcards, for sure - I like receiving them, receiving the evidence of your thinking and feeling (and I do, always, remember that it costs a great deal, and feel a little awe at it) -, but keep that core of what you need for yourself.

It's something I'm learning. I'm better at it than I was; at titrating. I no longer *can* do myself the injury I once took for granted, for anything much less than a child in front of a bus. Paradox is that I do more by titrating than I did by pouring out all I had.

(& lately, when I've neglected to titrate, I've come up against the fact that body and mind *will* take back what I steal from them. Not dramatically, but enough to be impediment and reminder.)

No, I don't know what that means to a woman in your state of health. How can I pretend to? I offer it because it's what I have, and maybe different sorts of extremity have enough in common to make it worth while. Fewer strokes? That'd be a good thing.

Yea, we all knew it was bad. I've checked back, hoping to see a one-line post. Debated should I e-mail. (I realise the answer to that is *yes*, but it's one of the things which doesn't easily get into my thick head. I apologise for my stupidity, and the little extra loneliness it costs.)

I'm sorry (well, obviously!!) about the latest big stroke, on top of all the little ones. And about the having your windows blocked off. And the thousand needles pricking you... I sew, sometimes (badly), and a thousand pinpricks adds up to some pain.

"Talk to me, not to my dead body." It's a sound point. but if I say nice things about you when you die, and I dare say I shall, they'll be for Linda, and Cheryl, and the others I sort-of know through this blog. Oh, and me, of course.

You touch us. You stretch us. Those are good things.

Not going anywhere.

Vanessa and Gang... said...

You did not lie, at least not to me, and so don't have any reason to apologize. If anything we, as a group, should apologize to you for those that have turned aside and run away from you. I am sorry for apathy and uncaring. It shames me as a human being that there are those that hurt you and do not care. I wish we all would or could do more for you, now, when you need it most.

I got into this knowing you were terminally ill. I don't know "Super Beth", or the Beth from long ago, I know you now. In pain but still fighting. You fight for each choice, each day, each freedom despite the odds and that makes you amazing. You fight just to try and explain to us the truth of dying despite the fact that you can't see right, feel your hands, and suffer from horrific pain constantly. It's why I care about you and won't run. Every gift is precious, every postcard a blessing, because I know exactly how much effort and will it takes to do each one.

I do not want to take your choice away from you and say "do not". "Do not send gifts or postcards because I know how much they hurt you or because you can't afford them". I don't want to say that because I love your gifts and postcards and your choice is important to me, your love is important to me. I never want to see you run down though, I don't want you to do that for me or my friends. I feel bad knowing your hurt yourself so that I get something beautiful and priceless. I share these things with others and I also share with them the toll it takes on you to do so. I share with them to try and help them understand.

You are a wonderful person but very horifically ill, I understand, and it's OKAY... You should NEVER have to apologize for that. WE love you and that's not ever going to end, no matter how sick you get.

Baba Yaga said...

Reading through comments, another thing, which has been troubling me, comes to the fore.

Preface this by a small confession of my own. In the important things, I always err on the side of not communicating. I said once that Silence was my first language, and in a way that stands, even though now it sounds a little melodramatic. So, I confess, I'm even more of a blithering idiot about asking important questions than about saying important things. So I've left this unasked....

You've written me long, beautiful, hard e-mails. Sometimes about hard things in the now, sometimes about your history. If I manage to answer in real time, the calculus is fairly easy: reasonable odds I'm sending back to the you who wrote it, the adult Beth, the Beth who still remembers what she wrote to me, the Beth who isn't going to be shocked by my response, which may go into painful territory, or her own quoted remarks, but perhaps comforted.

My best friend would not claim that I'm reliable in e-mail. So, when I have the right sort of words a week or more later - it's a week or more later. I'm not sure, then: do I respond in the same vein that you wrote to me, not knowing whether it'll be a child Beth - perhaps a child Beth happy at the computer - reading what I return? Reading about things in your own life which may have gone adrift in the medium-term memory hole? Is it fair to remind you of pains you may not recall?

But is it, possibly, fair to leave unanswered what you write from the heart, effortfully?

I think you'd always say, "Answer". But it worries me to do it. And it worries me that if I answer, you'll try to respond, regardless of the energy you have, because I wrote with the (far greater) energy I have.

O.K. I leave it there.

Oh, and what Linda said, "And I, I felt angry at myself and guilty for not finding a way to say STOP and finding a way to help you see that it was okay to not send out the postcards."

Yes, this is it. Not, "don't send them", not at all that, but, it's o.k. not to. Or not to send so many so often.

There are maybe 20 cards from you above my door, there's one on the fridge, there are more tucked away: your care is tangibly there before me. (And that's not counting several gifts.) If in any given batch or several batches you can't manage a card to me, or if, of the number you can send, someone else needs one more than I do - why, it's as good that you are husbanding your energies, even a little, as that I receive one more card. I shouldn't take it as lack of care for me, but as overdue care for yourself.

Elizabeth McClung said...

Baba Yaga: Oddly, if there is one thing I don't lack, it is 'Hubris', as my motto used to be, "It is not impossible until 'I' say it is impossible" - due to my annoyance at all the people who always told me that what I imagined to do was 'impossible' and then I did it. So deciding that I wasn't going to wait around for a long enough lever like SOME mythic characters but would just attempt to shift the world anyway is oddly my style.

Bonnie said...

I'm here, I'm reading, I'm listening. I do wish I had your way with words; I can't find mine right now. Maybe later.

rachelcreative said...

It can be so hard asking for help. And even once you've asked for help on one level needing more help is still tough to admit and tougher still to ask for. That's my experience anyway.

I know it's demanding (understatement) to hide how things really are with your health & needs. So I can only imagine how hard it has been to expose yourself and be so honest.

I find myself, as ever, saying again that I don't have answers or solutions and I'm not finding the words to soothe or comfort. But I can't pass through without saying something, without you knowing I heard you. I hope I don't say the wrong thing - but I have to hope that's better than saying nothing at all.

So sorry to hear about the large stroke and furhter loss of function and brain damage. I can't imagine how the financial situation you find yourselves in is compounding the constant struggle to just survive.

I'll keep doing what I can to help - even if relatively it's just a drop in the ocean. I'll do the best I can.

deadrose said...

I can't possibly know what you go through daily, Beth, other than your descriptions.

I *can* understand about the 'being tough'. I've always had two sides to my persona. One is only seen when the depression gets too bad. The other is 'tough little Heidi', the punk rocker, the roadie.

I have to actively fight that part of myself now, since it runs to 'damn the torpedos' behaviour. Of *course* I can do that! It may be hard for most guys to do, it may be insane for me to even try, but I'll do it anyway.

It's been a very useful attitude, not only for having great adventures, but for surviving single motherhood, and getting things done regardless of personal cost.

But physically at least, I have to let go of it, even more than I have been. I can't even exercise in the way I like at this point, which really saddens me. Lack of balance = no dance classes. No martial arts. None of the things I love best.

So I do understand about EFM.

I've missed days writing to you. It's not because I'm out having fun and forgetting about my friend. It's because some days the depression wins, and any email I write would be one big whine that I dumped in your inbox. I really don't want to do that to you.

So sometimes I have to wait until there's enough Tough Little Heidi to help me write. It doesn't ever mean that I'm not thinking of you.

And as soon as I can get out to the shops there will be some fun coming your way. Because getting things in the mail is such fun!

love, Kita said...

I am speechless Beth. Your honesty shining through the pain is ..well, to be bloody honest, is almost too much to bear. You shine a light with every word, every pain filled sentence. You have no need for apologies - it is I that must apologise to you. I have read from afar, too wrapped up in my own stuff to comment.
I wish, my dear Beth, that I could reach out over the ocean and embrace you, my dear sister. I wish I could take your pain away, simply because I know what pain is.

Mer said...

I fight to write because someone will need this...

We have.
We do.
We always will.


You are such an inspiration, I am learning so much from you.
You have such spirit I can't help but be infected by it.
You and Linda are just amazing.