Wednesday, May 04, 2011

Survival (version 2 with editoral notes)

Those around me know without saying it; because that’s the rule, you never say it. Dying. When you are there and I am dying and soon, that night when the fever keeps up and the pain doesn’t go. Those are the nights the body is shaking, and burning, and the heart is crushed and the body shudders when it spasms. Then the lungs need to have someone breath for them as they lay down, for a few minutes; for longer, and longer, it goes on and on. On those nights no one talks about ‘how long’ or doctors or hospitals, and sometimes they leave the room as they can, not watching anymore. Then a corner turns and while I’m as weak as a kitten, it might not be this time, it doesn’t feel like it anymore. So no one talks about dying. Because that cloud has passed…for now.

And so no one ever talks about it. Which means that everything is supposed to be the same day to day. But it isn't. I am lucky if it is the same for six hours.

And for me? When things are bad, it is like trying to live in a burning house; this isn’t a place anyone would want to be. When the body starts failing and rejecting the most basic functions, the physical cost is more than one would think consciousness could accept. The oft prayer: “Oh God, please, please let me pass out, let me go, out, away, I don’t care, but I can’t do this anymore.”

Except somewhere inside the need to keep going is something hold to. ‘Just a bit longer and we’ll sleep and sleep...’ the promise is repeated through the dozens of minutes until the hours pass. When I finally sleep and wake, fever free, but to weak to move, all I want to do is be up. I’m going to live, at least a while longer, and there is so much to do. (Which is why I can never seem to get to bed on time, that and the frontal lobe thing means I have very low will power at the end of the day)

“Pain pills” they say.

“I can’t move my hands, my arms.” Fingers push the pills and the water nozzle into the mouth.

Later you beg, “Please, pain pills.”


‘PLEASE.” It is hard to make it sound like a request, and not like a prolonged whimper.

I do not envy Linda as she bears the bad news, and so more silence before, “can't have any more for three hours.”

I make the sound that is half hiccup and half sob. There is me, and the pain and I moan, sometimes I wake myself up with moans. “Anything, please..” I know I sound like a junkie, or a beggar and I don’t care. How can I care what happens outside my skin when it is like this inside it.

And when I can breath okay, and Linda, a week of working done, helps me get chores done. I find out what I’ve missed. I lost a weekend entirely. So no postcards out, but I didn’t receive any mail either. Well, that is what it is. I think of the dozens of people I spent working through the night to make postcards, and cards and package gifts, so that they know I was their friend, as much as that can be without skin contact. And if 90% of those individuals are gone, I miss them. I miss them but I hope they are happy, because oft they didn’t seem so happy the last few times they emailed. I carried as much as I could for them, perhaps it wasn’t enough, or perhaps I wasn’t giving what they wanted. But now I am failing true friends, those who have been there during the bad and worse times. These are the ones I very much want to send a card, a postcard, an email. Forgive my failure . (Looks like a Pity Party to me. I can't tell which bummed me out more, getting no post or being so ill that I haven't been able to get out any postcards or worse, four cards for gifts already picked and waiting, not in two weeks - that would be lax, except it isn't, as just being up to talk sometimes is pushing my health. But the rest, yeah, it is a Pity Party. Oh well, I guess we all have them now and then)

I am so ill I only have the computer on every few days. Often I am in so much pain that I don’t want to write anything in case it comes out full of that pain or angry. (But I got tired and frustrated and that came out too. I think people who twitter or tweet or whatever takes even less time cannot imagine not turning on the computer or checking email for days but it happens, and the more ill I am, the more it happens.)

I can pretend I don't get angry, but I do, though not at Linda so much, still at myself though. But while I get weary at the 'trench work' (the digging and filling trenches which is the chore of staying alive), I don't get angry. On Monday this week, the first day I can sit up, after doctor appointment and four others, I somehow change and am up at the Y doing the boxing workout, harder and harder until I sweat and sweat….I can’t risk not sweating enough. And I think, “52 more times and I might survive a year.” By the time I lay down for the nap afterward the pain in the spine is so bad that I can’t stop moaning, and screaming at times. This is the choice I made in order to live. How can I be angry at that? (Pretty easy. I have to do all this horrid stuff. The director of the Y told me he doesn't do the amount of push-ups I do, nor could he. I do them, or I die, yet I still am viewed as a fat lardy)

I get angry though at those who depend on my sense of honor, trust and word to remain after they break their own. I do not like the computer some days, when this is all it brings me: a world filled with half lived lives. It isn’t the money they make, though struggling from grocery bill to grocery bill it hurts when my parents write Linda (cause she’s ‘nice’) to tell her about the new Wii, and computer and netflix subscription and the two week vacation and how they will be back the day before my birthday. It is that they know I have protected their names, identity, addresses even as they use the blog. It is perfect for control freaks: think you know and judge the other person without ever having to open yourself up. (This is the frustration of a few things or incidents which keep occuring, often never mentioned on the blog, so why do I guilt everyone out? Why can't I be open enough myself to say that I get hurt often, sometimes daily by the insensitivity to some people in regards to my disease, my limitations, but also in expecting me to be the same person I was several years ago. For example, if you email me at 4:00 pm, and I don't email you back by 8:00 pm, I have not 'abandoned' you, nor have I 'rejected', or 'spurned' you. Just stuff like that, which hurts because I end up feeling that I have, that I AM a bad person, only, I was sleeping or ill in bed so later, when I read the emails, THEN I am a bad person)

Risk nothing: that is a half lived life. Or use me as a sealed confessor, then speak or comment in ways opposite to that. Masks are a half lived life: if you spend eight hours a day in a mask, it is half of your life. (I think I would amend that to say that Masks can be a survival tool for a time, but also a safety net which can turn into a silken trap where they are worn for a life, or interchanged so often that will the REAL....whomever please show themselves. I we had known how hard it was, would we have come out of the closet? Thankfully we didn't, as I know we never would have grown. The same true for disability - I ignored those with disabilities because my own were ignored, and I wanted to please the people who did that more than I wanted to accept that as part of my identity and learn about it. That was a bad decision, and one which went on far, far, too long)

Soon there is a birthday, my first. I have had no birthdays because my father decided it was ‘vanity’. And if I got presents or even money from my grandmother or my grandfather, he stood over my while I wrote a note tell them no thank you and he took away and sealed it and gave it to my mother to mail. I have yet no party, as I don't know if I am supposed to plan this or others, but should they come? Let's vote. I don't know what else to do. The last time I had written communication was during one of my parents two month vacations last year (no, not the two cruises back to back, no, not the one in Arizona, the OTHER one) saying that the promise they made some years ago to cover a medical expense, well, some of their US investments weren’t doing that well so I was a luxury they couldn’t afford anymore. I don't know what to write back. But I think they would be a party buzzkill (or a curious attraction?). (Okay, Pity Party Number 2 - Wake up Beth! You essentially have no family, or certainly not one that wants to care about you. The quicker you accept it, the less they will be able to jerk you around. And giving them 'new chances' every two months doesn't help. After all those new chances, they can ask for one if they want one, they are not shy is demanding the other things they want from you.)

So, surviving, or not, at times.

I made it out to vote Nationally. We had an election in, nothing changed. I wasn’t registered, but had the documentation. Now I am registered for home visit voting (“though there is federal, provincial and municipal and they each have their own requirements” I was warned. I gave them a look and said, “of COURSE, I am in Canada, right?” Which means if there is a 'back asswards' way of tripling the energy for those who are disabled or elderly, it will exist.)

See, when I have a day when I have two spoons (instead of the 200 most people have in a day) and go to vote and end up being okayed to go vote at booth 184 and then the person at 184 tells me that they don’t care who said what but they weren’t going to let me vote and what was my name again. No, no, I need to start at the beginning and go to the START of registration line (they ignored me asking, ‘Where IS the registration line?’). And the registration line wants to know why this wasn’t taken care of when I showed up by the first person. And more paperwork, and more documents and then back to 184 where my documents are very thoroughly checked. How many spoons is that?

With so little energy, why would I waste anymore on anger? Because I have asked 10 Canadians, all managers what they thought the unemployment rate for Canadians in wheelchairs was. Not one guessed lower than 70%, several guessed it at 90%. When I told them of integration on the trip to Sakura-con and how the person who parked us on the Washington ferry was Deaf, they just stare at me with a ‘Is that legal, shouldn’t someone go and stop them?’ look. I realize then how small we have allowed our minds to be, through a collective bigotry we would rather laugh awkwardly about than change.

When the same person who guessed 90% unemployments then says they are shocked, I ask how they feel about racist jokes, about sexist jokes, and if they have EVER seen someone say to someone telling a person in a wheelchair NOT to do something or pushing an elderly person aside, or saying or hearing someone say, ‘God, if I was like that, Shoot Me!’, and EVER seen or heard anyone do ANYTHING, EVER not just now, but their WHOLE LIFE? So far I haven’t had anyone who has heard someone say: “No.”, "That's offensive", "That's not appropriate."

I have lived a life, working from tween years, for 20 years as a servant. I have tried to serve so that the person being helped didn’t realize why this day, this week, this year was better. Part of that is listening to people, finding out what matters to them, what is important, and what they like: to find out who they are and who they want to be. People send me postcards as gifts. Except that Postcards are my JOB. So that is like me sending people pencils or shoe laces. Because they use them right? And I use postcards.

Sometimes, people ‘get’ it, and the postcards they send for the postcard project, not to me, but to the project, are ‘right’, they are a paper or style not available anywhere else. I got a gift of postcards that are going to make at least 50 children happy. That will make Linda, Cheryl and I happy. (Some people send postcards and don't specially say they are for the project but I assume that. But they also have a relationship with ME.)

Someone came and visited me as I was. “Where you are, there shall I be.” They didn’t have to say they loved me because how they treated me, how they understood without having to be told, how they rested my head told me everything.

I needed socks and there were socks. (I am giving examples of things which happened recently of things which stay in my mind, which has a short and small memory, that say, 'I hear you. And that matters.' I am certain this has happened many times, many, many times over the years. Sometimes though, people will drop off the radar, and that is kinda sad. It is like a friend who won't talk to you and won't see you - that's the limitation of internet friendships)

I am not angry at whoever is reading this, I am sharing with you what it is like when consciously having to grit my teeth to take the pain of lifting my lungs so I can breathe is a day when no one talks of dying because I can do it, and I might be able to do it for months. (or not)

I’m not angry because while I might miss you, if you used to comment or sent back postcards, or post, after two weeks with no letters, in fact, no mail at all last week – so no Easter messages at all. It is not the best reflection of humans. (Sheesh, get over it Elizabeth! Mail is delayed, stuff happens. This is the problem of writing blogs combined with the emotional and mental decay - sometimes the adult writes the blog, sometimes the pouting 8 year old does. Though I think for all of us, a pouty 8 year old is not far beneath the surface on at least a few subjects, this it seems is one of mine)

I spent 20 years, silently making sure you were okay. (not eloquent) I spent 30 plus years being the obedient child, the sibling who wanted only reciprocal love and if I was thought of at all, it was how great it was that I kept doing all that I did. And after I ill, I tried, in many ways to be there. Really, I did. (I think there is a frustration that people assume that well, of COURSE, Elizabeth would push through and push on. And perhaps the guilt of not being able to put up photos of Sakura-con quickly is in there, only because it seemed several didn't want the pictures, they wanted more or different pictures. So the one nice time away became something I felt I couldn't talk about or show without criticism. And then there is the challenge of saying how I feel when often I find criticism painful. And even more because I share pretty bluntly and openly, but those who find problems are not coming out with examples from their own lives, just finding fault with how I am living or expressing mine. But then, if I want people to read with interest, I should be an interesting writer. I don't know how much a palliative and brain damaged writer CAN be a 'objective professional' - should they whole 'anything goes' idea of critical response be applied to someone who has brain damage, or who has such a limited scope of life view? It is an interesting question).

And now, I am several months PAST where people disappear from the public's view, long past any 'last lecture' or where they are told to spend some time with family before it is ‘too late’. Some people don’t get how I can do things, still go to the Y, ask how I am, and when I say I am palliative, they get all puzzled, or frustrated or angry because how can I be there? Except those who know me, who see me and who either don’t talk about it, or say, ‘Today, you’re looking better.’

So, I am going to take some time, of the time I have left and be selfish. Which is why I guess talking to the four adults sending me in a round robin to get to vote gets me upset.

For those who wonder: those actions you take, the letters you write to me, to anyone who is ill, the drawings you send, the parts of yourself and the listening you give to those who are ill, and the emails, they are ALL appreciated. And when you don’t hear anything back, then listen to me now becuase here is your 'thank you', because the ones where you don’t hear anything back are often the most valuable. If you knew how precious you might be ashamed. I know I was when someone’s widow would say, “Elizabeth? Elizabeth McClung? I know you.”

“No, I don’t think so.”

“Yes, you wrote a letter. He kept it with him, even at the hospital he kept it with him.”

And I think of something that I wrote, finishing early so I could go off to do ‘something fun’ and all I can feel is the overwhelming feeling of shame. It could have been so much more, it SHOULD have been so much more. “I’m glad he liked it.” I say and try to escape since my earnest desire to burn a hole through the floor has failed.

Paula asked me in the comments ‘What do you want for your birthday’ and I thought, “I guess I am supposed to say, ‘Peace on earth’, or is that just for beauty contests?” It is my first birthday after all. I don’t know what I am supposed to do or want. Things are actually starting to look a little better for our life, and I know how many people in Japan and elsewhere have needs. I am saving for a piece of art which I don’t know if I can show since without much of a frontal lobe delay I am more vulnerable to being laughed at (oh, I checked, I can't reproduce without permission and I don't have it yet).

DVD sets of TV series or seasons are coming soon, so probably gift certificates (they are REMAKING the series, The Killing, the amazing hit show from Denmark so it is set in Seattle with American Actors! This however was nothing as strange as finding parts of ‘Little Britain’ REMADE with American Actors for the American ‘Little Britain’ – changing the settings, the backstory, the situations, the character and then the complaint is, “I don’t get this British Humor.” – British Humor? What possible UK aspect is left?) and certificates are a good gift as Linda and I are watching Burn Notice as and when we can (apparently for the second time – a plus side effect of temporal lobe damage), we are half done season 3, so the new one is up next. We don’t want Dexter or Chuck. But I am looking forward to some TV with ZIP, with something as I am pretty much out of things to watch when the pain is bad. And lately it has been bad (they upped my pain meds before the Sakura-con trip then another 75% up after the trip along with a doubling of the breakthrough medicine). That takes care of 50% or so, sometimes 30-40% of my pain. I dreamt this evening that I was having my thumb severed from my body, and waking up to find it was still attached, and that I haven’t had to snap a dislocated jaw back in wasn’t even relief, it was just facts.

As the LCN said after seeing the burns on my body from the patches, which burn through the skin down to membrane, and what it was in Feb and is now he made a face that was like he was going to gag up his lunch. “That’s insane!” I totally agreed with him. However I don't think sanity isn't the best way to deal with where I am right now. It is survival, and if I can keep doing it, then I live. And living to me is better than the alternative, and the phrase ‘hopefully a better quality of life’ gets a ‘Hell Ya!’ out of me (at least mentally on the bad days). Oh, stuff on wish list is good too, I think, or if you know me, you listen to me, then your mind is far more than mine can clever be.

The DVD sets I hope for include:
The Inside Complete Series (not out – is there a way to get episodes? The women who wrote first season of DollHouse did this)
Royal Pains Season 2 (May 17th - $27 on Amazon)
The Killing (from – Danish Version)
Waking The Dead Season 9 (From Amazon UK – out now)
Dark Skies (is this good? It is from the 1990’s, I think)
Stargate Universe season 2 (May 31)
Burn Notice 4 (June 4th)
White Collar season 2 (June 7th)
Rookie Blue (May 31st – is this good?)
Swedish Fish (now – they really are fish, just gummie and yummie)
George Gently Season 3

DVD sets I don’t have a clue about: Nikita (didn’t this get done already? Twice?), Haven Season 1, Glades Season 1, Covert Affairs Season 1, Rizzoli and Isles (this looks interesting!)

DVD sets to which I say, ‘thanks but no thanks’: The Big C (Will they whore terminal diseases – don’t they always? “We don't see the fear, the depression, the disbelief, nor are we let in on the details of her diagnosis or her treatment options, all the minutiae that terminal patients face.”), Supernatural season 6 (Once we have the ‘quest for God’ or ‘Quest for Devil’ I watch season 2 again and enjoy the TV movie of the week), Chuck (I liked him as a nerd, with nerd friends, we both ditched the last season), Glee season anything (I tried but could only watch 1 episode at a time, the lying by the characters was that bad – I don’t like lying and I sort of hated everyone by episode 8 – my 4th try at watching season 1). Mad Men season any (the longing of men for the ‘good ole days’ of doing bad things, drinking, smoking, littering and treating women like pets’)

Back to getting to sleep on time, getting up, and getting the things done that need getting done. I do hope to have energy for sorting photos soon. I want to share more of my life with you. And I will keep trying.

For K, for M, for V, for J, and Linda and all my friends because Cancer gives equal opportunity, Laura is doing the 60 km walk to fundraise for specific items like two mobile mammogram machines (10% of those with Breast Cancer are men – one man family knows had his ribs removed and a kevlar mesh to keep his insides..inside), and financial assistance for families. Her descriptions are honest and real. It isn’t just the cancer, but the treatment, the surgeries, the unknown complications, the tests which hound you with terror. Having had my gums recede the last few weeks and a tooth loosen due to jaw clamping in sleep, I could relate and wish this on absolutely no one: “She was in so much pain that she clenched her teeth so hard that she cracked two of them and now has to go in for crowns.”…” losing so much weight the little fat pads in her feet disappeared so it hurt to walk, her bones poking out and her clothes hanging off her because it hurts too much to eat and what she does manage to eat she can't keep down.” The link to her fundraising page is here.

The big C means more to me now, inside the system. My GP is a terminal C doctor, my hospital treatment, my prognosis, my developments what they can guess or figure out is because of those who have had lung cancer, heart cancer or other cancers which at the end affect autonomic failure. The way pain is understood at this level and the kind of pain treatment I get is thanks to the tens to hundreds of thousands who died from Cancer. The way hospice, respite and care palliative home care will occur is thanks to the voices and advocating of those with Cancer and the families. I wheel on the bones of the bodies who have gone before me.

Thanks is inadequate but a place to start. I will think if there is some focused fundraising I can do, a sort of 25% of sales of items doe Laura’s walk. I am open to ideas.

For those who are hanging in there: I get out of bed every day. And every day that is an act of will. Like so much. I say that because I know that can be true for so many lives. This is the price we pay so we may experience the unknowns of tomorrow: having things like a loved one braid your hair, or sharing a song.


Baba Yaga said...

Arrrrgh!!! Blogger's eaten my comment again. It was a long 'un, too, and recreating never works well.

Memo to self: do not try to post comments without first saving them somewhere.

So, fragments:

1. Yes, please take of the time you have left to be selfish. You have so much less of it, so much less which is usable, than most of us; and it'd please me greatly to know that you were giving some of the love you so determinedly give others, to yourself.

2. I'm not in the least surprised that you sound like a junkie when pain's ripping you apart: I'm amazed that you manage so well to pull together the ravelled bits of you-ness in the intervals of less pain.

Yes, dying. As long as I've known you, I've known that each blog post, each postcard might be the last; so the next is a gift from the universe, as well as from you. Understanding what it means for you, though, how dying becomes the work of dying, and what lonely work it is - I see the less frequent computer time, and deduce something from it but my deductions are pale, thin things.

I'm glad you write these posts: I hate that you have them to write. Pain is a dreadful thing; pain in isolation worse. And no, survival isn't pretty: it's slog, and tears, and bloody anguish. So we who have the luxury of quailing do.

3. Bureaucracy does not understand spoons. Bureaucracy eats spoons.

No postal votes available? I have one, so voted on Mon. (because I don't entirely trust the post to be reliable - you should have had at least *one* bit of mail!) for today's election. & grateful I did, since it has been a day of unfunction.

4. (What a random fourth.) I'm not sure I agree that wearing masks *must* equate to a half-lived life; sometimes, I think, masks free one to live a little more fully. If they're flexible, and permeable, light and not constricting - well, that's very different from some rigid thing grafted to the skin by overuse.

(I may be more concrete about metaphors than is strictly desirable.)

5. Migraines apparently make my typing not merely bad, but strangely so. Firefox's usually-irksome spelling-check comes in handy today.

6. Postcards. If I find ones I think you'll like, I send them. Not exactly to you, in the same way that something for you is to you. But a little to you, too, because it's difficult to find the right cards for people, and satisfying when one does. It troubles me a bit to address them to you, as though they were personal gift; but it troubles me also to address them to the postcard project.

Neil said...

I know you're dying, dear Beth. That's why I treasure the post cards you've sent (only asked you to stop, so you could use that energy sending them to someone who needs them more). I also treasure the good book and movies you've recommended (and sold to us).

Most of all, I treasure you and Linda. Thank you, Linda, for looking after our, and your, Elizabeth!

I can only imagine the pain you go through Beth, and I'd prefer not to, thanks. But Middle Son has Benign Atrial Arrhythmia, and has had hints of the pain and the (lack of) treatment you go through.

So go do what you have to to stay as alive as you can, while you can.

Baba Yaga: your line about the luxury of quailing is perfect! I'd offer to marry you, but my wife won't let me. ^_^

Love and zen hugs,

Neil said...

Ah, you've edited whilst I was writing my comment. No guilt, Beth, you don't need to be guilty of anything but eloquence. Yes, you sometimes sound like you're pouting, but I assumed that the pain and frustration of dying, and of not being able to get treatment, of not being the person you should be, are showing up occasionally. I know *I* would pout and scream "It's not FAIR!" if I were in your shoes.

Yup, you're dying. And you're takin' yer own sweet time about it, too. So? You just take all the time you need to do what you have to do; look after yourself as best you can; and tell us to go to He- North Battleford if we get upset that you haven't responded instantly to our every whim.

I admit that I'd love to see more Sakrua-Con photos; but I know that you will post them when you have the energy, or the time, or the drive and ability to do so.

Posts from you, sweetie, are like presents sent for no particular reason: they come when they come, they are what they are, and I know that I'll appreciate whatever you surprise me with when your post arrives.

Pity party? Nope. Drugs making you sound like it, maybe, but I understand that you're not going to be a lucid as you might have been 4 years ago. We're ALL different from 4 years ago, so deal with it.

You've taught me to be more sensitive and understanding to those around me with different abilities, and I've found some rather incredible people behind the "funny" voices, the powered wheelchairs, white canes, etc. thank you for being my teacher, dear Beth.

More zen hugs,

Noisyworld said...

I'm always happy to see a new posting, I don't care if it's by a pouty 8 year old- seems fair enough under the circumstances- I occasionally let loose a fully tantruming 5 year old and I don't have your rather impressive reason ;) though my brain injury and hyperacusis could explain it I think it's because it's the only way I know how to fight everything.
I know I am not a postcard person but just knowing that I will be getting Manga for my birthday is like having a reciprocal gift- I get the books and you get some money to help you do the things you want to do with the time that is only yours and should be spent how YOU want to (stuff everyone else this is your life-hmmm I think the 5 year old's back!)

I am always sad to read that you still have to battle to get the medical help and emotional support that you (and, well, everybody) deserves. I know I don't always say, type or do the correct thing, I hope I have never opened my mouth and entered my foot lol

Sometimes masks (or perhaps safety-vests) protect the part of you which is most easily damaged but should come with a health warning: repeated exposure may have side effects :)

I hope you have a fantastic birthday, however you spend it, surround yourself with the people you know love you properly and with happy memories of those who are no longer here, they loved you too :)

wendryn said...

I have a few things to say and I hope I don't say them badly.

First, I think you should be selfish. You've taken care of a lot of people. Your time, much as I hate to admit it or say it, is shorter than most, and you should do things you want to do.

Considering the level of pain you are dealing with, you have every right to need the pain meds.

I think that all of us have an 8 year old who needs to get out sometimes. It's okay to let out that 8 year old. Often it's necessary.

I find myself very angry about the voting fiasco. I wish you hadn't had to deal with that.

I hope you get the DVD sets you want soon so you have something to keep all ages of your mind amused. *hugs*

Tina Russell said...

(huggles) I love you, Beth. You mean a lot to me, and you always will.

I don’t blame you for taking time for yourself... blech, and ignore anybody if they do. I think I might know the feeling, though, the quantum superposition between “do they not like me? Well, screw them” and “gosh, what should I be doing differently? I’m such a wreck!” (Am I on the right track? I spent most of my waking life in that state.)

Anyway... Beth, I guess I usually write to you after getting a card from you, to show my appreciation and give you an update on my life and such. Would you like us to write when we haven’t heard from you in a while too, though, and check up on you? I know that can be pretty meaningful.

Okay Beth, hugs and love, give yourself all the rest and care you need!

Baba Yaga said...

Post-edit comment:

Beth, you are a remarkable person. You strive so hard to be the very best Beth possible; so hard that sometimes you ask the impossible of yourself. I love the striving in you, and I grieve for you that it gives you so little rest, to be what you are - which is quite good enough.

Pity party? Yes, we all have them, and I'm not honestly sure why that's thought such a very Bad Thing. Isn't it a dismissive phrase, imposed on us by an age rather allergic to allowing credence to others' feelings? Doesn't it pretend that there's no valid reason for either being or showing upset? I think it is a pretence - after all, if you don't tell us what frustrates you, we can't either commiserate, chime in with our own, similar frustrations (and sometimes, one only really recognises a frustration because someone else has clothed it in words), or do better at not frustrating you. If I don't let myself have an honest-to-goodness self-pity day occasionally, I get crabby and miserable and intolerant: that hardly makes the world a better place!

Too, the 8-year-old is part of who you are. (Who everyone is, if we're honest.) Why should we who come to read your blog not see that?

I rather like 8-year-olds, anyway: it's an age of honesty and acute perception, of exploration and unabashed candour, with just enough tact to make the whole refreshing. 8-year-olds have a knack of getting to the nub of things, which adults have learned not to perceive.

... Speaking of which, yes, sometimes the un-thanks are the most precious. Sometimes someone's offered a perception or a kindness which is almost too precious to speak; or to fully comprehend until the giver has gone on, never knowing its impact.

Last thing: why the hell *should* you be objective or professional, even if you could? Subjectivity is valid and important: there's an abundance of 'objective', detached, external views, but the fully-engaged, inescapable view from inside is rare, and precious.

But professionalism is another mask, and sometimes the world prefers us to wear masks, not for our sakes, but to save itself looking on ruined, beautiful faces. Those masks are confining things indeed, you're correct.

Linda McClung said...

I’m one of those people guilty of not talking about it – when it seems imminent I’m too worried about trying to make what’s going on survivable for you and when the crisis subsides I’m too exhausted or in denial. Probably denial. Talking about death sometimes seems like shouting in a church – it’s just not done. But it needs to be done. For planning yes, but more importantly so that you’re not going down the road alone. People can be around you, but if they’re not talking about the experience they’re not really with you, are they?

Your analogy of living in a burning house was very vivid and helped me understand wanting it to be over, to pass out or just sleep so you don’t see it and feel it. To have an escape from the horror.

With your pain, I do feel guilty for having to say ‘no, you can’t have one right now.’ But more often than not, now if it’s really bad I just give it to you regardless of time. If you need it, you should have it, how high a risk is liver failure in the grand scheme of things.

I am glad you don’t get angry with me so often any more. Sometimes I catch myself getting frustrated or defensive and I think I’d rather be spending time with you holding your hand or doing something else to create happy moments.

Those two women at the voting booth were very frustrating and just didn’t get the energy that it was taking you.

I hope Laura does well with her fundraising – it’s for a great cause. Until I knew someone who was experiencing it, I had no idea of all the trauma and complications that could arise.

rachelcreative said...

I read your post in my feed and then came to the site and saw your editorial notes. You remind me of me kind of having a conversation with myself where the you where your brain works enough to give you perspective and strength you can counter the you that is raw and from the broken brain part of yourself.

Well I just wanted to check in and tell you I am still here, still reading, still writing letters. We've had two long bank holidays in a row here in the UK so it will have effected the post from this end I'm afraid. I have been rubbish at planning ahead recently sorry if it left you without my regular letter but you may a couple close together.

JaneB said...

Hello Elizabeth,

Thank you for continuing to write. I know I fail, often, at being a good friend, or even an adequate friend. But I am here and I keep trying again. I hope that counts for something. I hope it's better than walking away so I can pretend I didn't fail...

We all have inner children and they come out. That's one of the things about blogging, I think, it (can be) a space where the inner child can have a voice. Your honesty is part of what makes you such an eloquent writer and a teacher.

And yay for birthdays. You definitely need to have a very very good one...

apologies for this being disjointed but... well, I'm thinking of you, and thank you again for writing

Olivia said...

Hi Elizabeth, I'm still here and I appreciate you taking the time to write this post - but equally think you should be selfish about your time. You don't owe blog posts or anything else to anyone.

As for your parents, they are very selfish and are (or at least were, in the childhood you have described) abusive. I wish you could cut them off and not keep getting hurt. But I know it's not that simple.

Wish I could give you a (non-painful) hug

Kate J said...

I wrote a really long comment... and blogger d*@>$d well lost it. :(

The gist of it was, that I feel bad you didn't get any mail - I'd sent a card so I guess it'll arrive soon, and I just posted another one. I feel guilty I haven't sent cards as often as I could have, when I KNOW how much it means to you to receive mail. Mea culpa!

Beth, you seem to feel you are letting people down somehow, when you haven't sent cards? Maybe you feel you're letting yourself down? I guess for someone as strong, personality-wise, as you are, to be feeling so weak must be especially hard. But you are strong. Still so very strong. It's the kind of woman you are.

It's very hard to know what to say sometimes, when you're describing your illness... and it's meaningless to say things like "I can imagine how you must feel" because I can't. I've seen friends with cancer or Aids, but I haven't ever experienced pain or serious illness myself, and I guess all of us, unless it's perhaps someone very close like a child or lover, can't really 'feel' the pain that someone else is going through. Deep down, we think "thank God it's not me"... and then feel guilty because at root that really means "thank God it's her and not me".

You're not letting anyone down if you don't send cards, or even if you don't post on the blog. Your friends don't need cards or blogs to remind them of you... although another card, photos posted on the blog, news and views from you are always appreciated. I've kept every card I've had from you - and think of you every time I use the little bento box you sent - but that isn't what friendship is about. You are in my heart, and always will be.

Let's hope blogger actually posts my comment this time (and if it posts both of them, won't I look like a complete idiot!)

Love & peace

cheryl g said...

I like your analogy of living in a burning house. It really conveys the pain, horror and helplessness. I am guilty of not talking about dying. Some of that is superstition; by not speaking it I can keep death at bay. A good part of it is denial, a good part is desperate hope that you will get better. There’s also the part that is me being unsure of what to say. That’s quite a list of reasons but ultimately they are all poor excuses. I am sorry for taking the cowardly and easy path.

Among the blessings your friendship has blessed me with is the courage to take risks again in meeting people and letting them into my life. When we were in Seattle at Torrid I was looking through the racks very hesitantly and then I thought I needed to step outside my comfort zone a bit more. The support and friendship and example you (and Linda) provide have encouraged me to let myself live and grow more. Taking the risk and stepping outside my comfort zone has been scary but good.

I am glad you are choosing to have a birthday and party. As for who to invite and what kind of party. It is your day, do what you want, invite who you want.

Voting – another sign of BC’s poor accommodation of disabilities. They should allow disabled voters to vote by mail.

I do hope you take more time for you in future. It isn’t selfish to want to reserve more strength for yourself. It isn’t selfish to use your remaining time on things you want to do rather than on meeting others expectations. You are the least selfish, most giving person I know. Noow, it it time to give to yourself instead of putting your needs last.

Lene Andersen said...

I recognize that junkie moment, where you're begging for the meds that make the pain go away, except not for long enough. It's beyond hard.

As is dying. I've read textbooks that talk about it being a process, but reading your words mean so much more. It makes it real, visceral, gives us a window into what it is like. Thank you for sharing it with us.

Be selfish, sweetie. Do what you have to do.

SharonMV said...

dear Beth,
I wrote a comment here a couple of days ago, but it didn't go through (my computer was misbehaving). I don't want you to think I'd fogotten you. It may sound a cliche, to say that I think about you everyday, but I mean it in the most literal way. You are a part of my life. When I'm working on something or get a new idea, I think "oh, Beth would like that".

Please be selfish. Take care of yourself and linda whenever you have the strength & opportunity to do so. It is that "self" of you that we love, so do protect it, be kind to yourself as you are to us.

I am so sorry that you have so many bad days and so much pain. it is as hard on the soul as it is on the body. I am glad that you sleep through some of it. But I understand the feeling of not wanting to lose time, of wanting to do things, to be up & in the world.

Love to you & Linda,

Rick said...


Your mind is still frightfully clear.

You are an inspiration.

Rest assured that your family members are not the only one's to put their obsession with money before family ..... a sign of the times I'm afraid. They carry their own conditioning and have not been able to awaken.

Have your birthday party ...... its for you and not others (at work, we have birthday parties for everyone).

Don't make much money but I will send a little each month as long as my job holds up.

Wished I had the resources to visit.

Rick said...

Don't know if this is going to be a double post (something seems to have been lost).

Your mind is still clear.

You are an inspiration.

Rest assured you are not the only one whose family members think more about money than their family. Their own experiences/conditioning have given them tunnel vision.

Have your birthday party (we have one at work for every employee).

Don't make much money but will contribute as I can as long as my job holds out.

Best Wishes

Elizabeth McClung said...

Thank you all for the comments, despite blogger's evil minion (google). I chose blogger in case of extreme poverty (oh look, here we are!) and that it would continue on after I died and not need maintaining, in terms of paying X server or it is all gone.

I have made open comments to try and make it easy but I admit I copy my comment before hitting the 'publish' button.

The comments help, particularly in the long times, like this one, where things are just me, the disease, and the will to go on.

Elizabeth McClung said...

Thank you all for the comments, despite blogger's evil minion (google). I chose blogger in case of extreme poverty (oh look, here we are!) and that it would continue on after I died and not need maintaining, in terms of paying X server or it is all gone.

I have made open comments to try and make it easy but I admit I copy my comment before hitting the 'publish' button.

The comments help, particularly in the long times, like this one, where things are just me, the disease, and the will to go on.

Elizabeth McClung said...

Rick: I wish you did too.