Tuesday, February 10, 2009

Alone, and trying to understand

I am going to die, and soon, by the way I am being treated. And it seems that is all people want me to think about, all I am supposed to carry with me, the aura of death.

Linda says I don’t know what it is like to watch the one you love die. To see her grow frail over the months, then weeks until you watch her struggle to breathe, to find her unconscious, to find her passed out. To carry her to bed, to feel her heart grow weaker under your fingers, and I don’t. I am unconscious every time they put the ambi-bag on me, I am unconscious for most of it. I don’t know what it is like, I don’t know the stresses so bad that you want to scream if there was someone to scream to, that this is just so damn unfair. But also, I am alone, because I don’t talk to anyone who understands what it means to be treated as death, to wake knowing THIS day could be the last, and yet, to go on.

All of my life anchors have been cut. Everyone a dozen to a couple dozen times a day thinks about the things that anchor their life in time and space; they should invite X over for thanksgiving; does Mom want everyone for Easter dinner? I should go visit my brother/sister this spring; I have been thinking about taking a vacation to X, wonder how much that costs. They have jobs, they have conversations, they know they will be seeing person R, T, and V today, they might go out on coffee break with person J, they are planning a dinner later this week with the Y family. They have a weekend off coming up, so they might just head up to ….. Our life is anchored by our sports, our hobbies, our jobs, our friends our interaction, our futures, our pasts. We do volleyball on Thursday, we plan to take a night to watch our favorite show. Except I have no anchors. I have no future, no one will make long term plans for me because every day I get up is a day I stop breathing. It is a day my heart stops beating. And one day they just won't start again. So there is no next year for me, no autumn for me, no ability due to extreme and unstable condition to make nightly plans, or weekly ones, even from hour to hour. I have no job, or chance at one. The medical and care people have written me off; they pushed into the shell of my apartment where, if it were not for Linda, I would see no one. I am to die.

On Saturday, my doctor, after seeing me, said as close as doctors do that it was over. He is dragging on referring to the specialist because my only chance to avoid the wait, by which I will be dead, even to his view, is to go to the hospital. He still hasn’t made the referrals, but he is eager to find out when Dr. G. is on shift in emergency at the Hospital. He yells at Linda and Cheryl on ‘why didn’t they take Elizabeth to Seattle sooner! Then there could have been treatment.” It has been rattling around in my head… ‘then there COULD HAVE been treatment.’ Then he gave prescriptions for painkillers and the same man who won’t give me 10 ativan pills in case “I get addicted” has told Linda to go past the listed maximum dosage on painkillers by 25%, then has given her four months worth. My doctor has given me literally 50 times the amount of pills needed to kill myself by liver death from just ONE of my pain killers; the second I can overdose 14 times terminally and the third I just don’t know how many times, 20 times the amount needed to die. Don’t I get the morphine drip option?

He is not treating my anemia, he is not collecting data, he is not doing anything. I have a broken toe, you can trace it and there is a section where it goes down for a chunk, but he won’t order an X-ray. I have fractures in my foot and he won’t order an X-ray because….I am going to die. My OTHER foot is twice the size and has bruising on every bone, we need to find out why, but no X-ray for that either. My T-cells, my white blood cells are off but he won’t order a full body X-ray for cancer. The blood tests he wanted last week, he doesn’t want anymore…..because I am going to die.

I am supposed to go away; no specialist will see me, or treat me because they KNOW I am terminal. Of every medical person, specialist, or long term care worker I have been with, all have told me in one way or another (like, “Well, you don’t have long to live!”) that I am going to die, and all the medical doctors, the specialist, the trained staff have withdrawn. Medicine is only exciting when you are hero, when you SAVE people. Doing more and more tests on a person you know is dying in a weird and pretty horrific way isn’t FUN, isn’t what makes you feel good at the end of the day. So there are no follow up appointments, even when Linda drops by their office to demand one, because they said, “Come back if it gets worse.” Because I am supposed to go away to die. The one person who knew I was going to die but who rooted for me and helped me to LIVE anyway is now leaving their job.

Today on the phone the occupational therapist from VIHA started to back out of coming at all if I was going to die. She said she would call to make an appointment in the first or second week of March. I said, “Fine, if I’m alive then.”
“You might NOT be alive?” Shock that I could waste her time by dying, “There is NOTHING in this file about dying.”

I told her how the manager didn’t WANT the medical details. Why then was I not in the palliative program? Somehow, it is now my fault for dying without filling out the forms first? I explained that when your heart specialist who is THE specialist has never treated anyone with just ONE of your symptoms, then they aren’t going to write saying when I am going to die. And when your neurologist can’t name one auto-immune disease that does ONE of the symptoms she found, she isn’t going to write when I am going to die. As for my GP, he won’t order an X-ray of a broken toe because ‘waste of time’ but he won’t put to paper when I am going to die. Don’t die strange or you get no help at all.

Well, the occupational therapist wasn’t so sure anymore if they were going to come over at all. I mean…if I was going to DIE. Because I must not need grab bars in order to take a shit UNTIL I die. Because I must not need to shower until I die. Palliative people are people too (get the t-shirt!).

Ten to fifty times a day I am told, corrected, reminded, explained on my death; I ask if we can see a concert and am told ‘No sweetie….that’s in September, and you know….”, I ask Linda when she is seeing her family, “Well, you know, maybe this summer…..after…”. We talk about when to go to ER, we don’t exchange love letters but final drafts of wills, or power of medical understanding. I start giving things away so that Linda doesn’t have to sort them. Anything I want, it is too far away; I want to go to Luminara again, but am reminded ‘That’s in the summer….” and a pause which says, 'and you won’t make it that far.' We know, the doctor knows, I should have a pacemaker but no one will put one in a patient with as much anemia as me, a patient with conditions where they simply won’t come back. No use doing operation on a patient who simply stops breathing when they get tired.

When I die Linda get my death money. So when I am told every day, by Linda, by everyone about how what does this or that matter because I am going to die, and I want to read a manga and I have none, I want to buy them. Why? Because buying at 4 for 3 on Amazon with free shipping is $25-30 and when I die (which is supposed to be any day) they get well, add some zeros to that back in death money. I am attracted to things I hunger for, for something little, something nice. I try not to do this, not to put Linda in debt but it is hard, hard to save for the future, work for the future when EVERY hour of the day I am literally told that, it doesn’t matter because I am going to die. “I think we should think of upgrading the computer.” Response: “Well, better to keep it this way so you have it every day, we don’t know how much time you have.”

And would I love to say, “Fuck that!”, yeah, I’d love to, except, I DO stop breathing every day, I can’t go exercising anymore like I used to, instead of exhausting and rebuilding I just exhaust and can’t get out of bed for several days. I don’t GET better anymore, not even in little things. Do I think if I had my anemia treated, my hypothyroidism treated, a pacemaker put in….things might improve? Yeah, but I also think that would require a lot of people to give a damn and right now, no medical people do. Does that frustrate me and drive me and Linda and Cheryl to anger and to tears almost every day? YES. YES. We end up shouting at each other because we are so damn helpless and we KNOW what can be done. Why can’t I get an X-ray, why can’t I get a blood transfusion? Is this 1950’s? No, but I am ‘extremely low priority’ so people can deny me it seems. So I rest, and I sit. And then I try to forget and go on.

So what do I do? That is what I am asking people and I don’t get answers. I go into store, the regular stores and no one will ask me, will talk normally to me. No one asks, like last year, what the specialists found or when I am seeing a new specialist or compare thyroid problems with me. In the print shop, in the DVD store, everywhere no one asks, “How are you?” because they know. I don’t know how, because I haven’t told them, maybe just looking at me or the change so quickly from this summer/fall tells them. They know I am dying and they are pulling away. They know I am dying and they don’t want to talk about it. No one wants to talk about it. Except, that while I have EVERY minute of the day in pain, I still have to live them, even though life is a strange land, still I want to try to LIVE them. I can’t quit, I won’t quit, I don’t quit. Sometimes, I get so tired I stop breathing…..sometimes I stop breathing for over 30 minutes….sometimes for 10……but I come back. I COME BACK.

Is this going to be the heroic story of the crip who determines to live and does so by will power? That I am the warrior Amazon, who bursts forth to fight the illness? NO! This is an enemy I never get to face, a defeat I experience on my own. Besides, If I had that will power, there would be specialists’ hair bursting into flame all over town, or....other hobbies. But I do have to go on. I have to decide on a future, even when I have no memory of a past, no chance to revisit any place that Linda and I enjoyed together, none of that. My memories are gone, my future is left blank for me to die in, and I am shut off. But I am not dead. I AM NOT DEAD. And until I die, I live. Try to remember that. It seems something I need to remember as much as everyone else.

Linda goes to support networks and they tell her she is more than a caregiver, and I agree. She is more, every day than simply a caregiver. I asked her, I asked other people, to tell me, what am I that is more than my disease? When and what I eat, drink, shit, piss, sleep is determined by my disease. What am I beyond that? I do not pursue professional writing or paid writing through that is offered to me. I would rather be here, with you. I cannot be a sportswoman. What am I? That’s what I need to know.

One thing I know is that I am an orphan. Sometimes you become an orphan at an early age and sometimes later. When your family watches you from the blog, sipping your life when it tastes good, skipping pages when it is bitter, like selective vampires but are unheard, unseen, un-family. I sit alone. A person only ever has one biological family, and in the same way someone who was left on the steps wants to know, “Why? Why? What was wrong with ME, that they had to leave? Why?” So I want to know. And when the letter comes back saying in various terms that they don’t want contact, it hurts whether you are an adult reaching out from an childhood abandonment or an adult reaching out from an adult abandonment. My father is possibly in the early stages of Huntington’s Disease (sic). I can’t tell him because.....I can’t see him, I have tried to talk and email him. But he hasn't been here, though he lives so close. For the last two years he HASN'T here three times a week, or four, trying to bring me favorite foods or cheer me up. My brother, who I informed my father had a neuro-disease several months ago has not taken time off to come see him, is not interested, or not interested enough in seeing his father, or being there for him. There is something very important for everyone somewhere?

My parents are now going to the very church, and the exact service Linda and I could go to (ground level). My father did leadership duties and I heard was very moving. I was told that my mother said it was like that was ‘where he was meant to be.’ My brother, is also a speaker in a Christian church. When I heard that phrase, I had to ask people to leave the room for up to an hour because it hurt that bad. The bible we all four believe in says, “This is true religion…” but most don’t know what James says after that, much less do it. When Jesus announced that the world had changed he read that the promise from Isaiah was now fulfilled; some, a few around the world of all religions aim for that. The rest, I guess enjoy the warm glow of praise during Sunday Brunch.

Better that my father be up there, speaking as if for God, having strangers feel something for HIM, than for he to be at the important parts of my life, and I put dying up there as pretty important in my life. I guess I waited a life to hear that my father, watching me with pride, with the same level of emotion that he can summon as the voice of God for strangers was ‘where he was meant to be.’ But it seems that much of my family are meant to be the fa├žade of Christianity. They are not where God or the bible, or the church tradition actually tells them to be; but they are at the front of the church, where the adoring eyes are turned. They speak for God, don’t you know? Well, it is true that God used a donkey to preach the gospel, and a burning bush, and a rock, so there is no real limit on what might be used.

Recently I had promises from two people, which would keep their word; for which was fulfilling their promise important? Only one, and that one isn’t blood, but they are the one I listen to daily, who I email, and send postcards.

Cheryl stood over me, at 7:25 am Monday morning and I told her, “You should have gone to bed!”

She almost shouted, “You and your (bloody) ‘no one is left behind’ it just gets into the blood!”We sent out every postcard we prepared for sending, we finished every package and posted we prepared: 71 postcards and 11 packages. In the packages were the Shitajiki and other Binsen I had spent a total of five days getting ready: five days of shower, of transfers, of exhaustion, of determination. To go and get them laminated, to get them picked up, to have them matted, to have them framed, to find the right people for them, to write the card to go with the letter and for Linda and Cheryl carry me to these places and wrap and post them. In many cases the postcards I send are just pieces of paper, maybe a little pretty but in the end, just pieces of paper. But if there are 2 or 3 people in those 71 who need, really need that week the postcard, for whom it makes a difference, even a small one, one ripple of light in the darkness, then it is worth it, isn’t it? I am sending off my own Binsen collection now, instead of trying to find duplicates. Less for Linda to sort through, and time to find the right homes while there is time. Even in this, I am death, I am dying. It took everything we had, it was hard, it went on and on, and it was painful literally for at least two of us and yet, it was true religion what we did, I believe. And yet, there is always next week.

I don’t know how to escape this but I am planning to live each minute until the minutes run out, and I won’t know that because I will gone. But don’t tell me when I am ready to go. If I am in agony, if I can’t sleep due to pain, if I am in pain every minute every day and I say, I LIVE, I will LOVE then I am not ready to go. And to those who believe in fate, so do I, and I was not created to die yet, my last job is not done. I don’t know it yet but I know suffering, and so I know that my job is not done. I cannot rest. I cannot stop. I cannot die because someone out there, maybe they don’t even know it yet, they will need me. But make no mistake, I will die, and when I do, screw the idea of me sending messages back, there will be a new mission, new things that need being done (like making the afterlife more interesting). But until then I am lost.

Lost. And not on some island. Lost because I have to go on when no one else wants to even look at me, when no one wants to hear what someone that close to what we fear so much has to say. I can break anything and I won’t be fixed, I am the dead girl wheeling. And?


Anonymous said...

How fustrating it is to read about your Dr. visits. That is terrible. But I guess that is socialized medicine for ya. If someone is terminal, don't waste money on them. What a bunch of BS! To bad you didn't make it to the states sooner....if you wait any longer, thanks to our new president, they will treat you the same way here. It's in his new "simulus" package. They are going to save money by not treating the terminal and the elderly who are dying of (treatable) natural causes. How sad.

Your in my prayers. Wish I knew what to say.....

Kate J said...

Beth, I just wish there was something meaningful I could do to help... but I have just been on your wishlist and ordered a few books for you (and Linda too, I think!) Hopefully they'll arrive pretty quick, and hope they bring a little joy into what sounds like a pretty difficult time for you and Linda (and not forgetting Cheryl).
I'm also so angry, I mean really ANGRY about the lack of care and support from your own so-called family. I mean, families don't always get on, but surely there is love there, or should be, and I cannot believe that they are so uncaring. What sort of Christians are they anyway? Not any that Jesus would have felt at home with, that's for sure. Luckily, you do have a real family, I mean Linda and Cheryl, and a sort of extended one, all of us out here in cyberspace. Just really, really wish I was nearer, rather than the other side of the world.
Love & peace

FridaWrites said...

The Candian medical system is just fucked, this is what I've concluded. Yes, palliative people are people too. And your family, argh.

My postcards are far more than pretty pieces of paper. I treasure them, and they've often come when I did need some encouragement. The kids like theirs too.

I don't want you to feel lost--I know none of us are in the same place and I'd feel lost too.

I hope the afterlife is indeed a beautiful and joyous place. I love you too much to want to part.

Anna said...

Horrific and beautiful and painful post. I understan that people have no words, no questions, no saying about the future. they are probably bewildered and don't know what to do. I talked to a guy, a friend of him and his wife is dying, a not very nice death I think, they are very christian, and well known christians. What can any of us in the congregation say. What? I told him to give my best wishes to his friends, but what does that mean, does one say, o sorry you are dying I will miss your laugh? Or does one just shut up, or what.

I don't know. Hang in there. You ask who you are. You seem very much like you, very human, very real.

parents......I am sorry for your family that they don't take time to know you.

sorry for that.

yanub said...

It's scary to watch someone you love with all your heart fall apart for unknown reasons and without treatment. It's depressing to know that there could be treatment, at least of symptoms, and see that medical professionals simply don't care, that they have, at best, the "concern" than the researchers in the Tuskeegee study had for their "patients."

I read a NY Times article, When Doctors and Nurses Can’t Do the Right Thing (linked to at Mind, Body and Soul's post "points of interest, vol 2, #3" at mormonmd.wordpress.com) that talks about the problem of "moral distress" as undermining health care. Moral distress is essentially the inability to do what is ethically right because of outside pressures. I think it is a problem in many fields, and also affects us personally when we see people being abused or in pain but are unable to stop the abuse and pain. It tears at our hearts and, eventually, we withdraw from the horror in an act of self-preservation. You know better than most of us that the person in jeopardy can also do this, divorcing from the body in order to try to preserve the heart. What else can be done when life is hope and hope is denied? How else do we persevere?

Before my daughter was diagnosed and began getting treatment for her seizures, I lived that horror of never knowing if the moment I was spending with her would be our last together. While the potential of her death on any day is now less, because of SUDEP, because she still has seizures daily, just not constantly now, I still am tentative, only recently being able to consider real planning and to think of doing things for solely my benefit. And she has told me similar, that she finds herself cautiously daring to consider the future. I know the chances for you, right now, aren't good. But it is my hope for you, Beth, that you will be able to dare to hope.

In the meantime, buy yourself some manga. What the hell, right?

Lene Andersen said...

I find it fascinating that YOUR DOCTOR yells at zero and Linda for not going to Seattle sooner when he has spent as long as I have known you not treating you. Your doctor. Not treating you. Still not treating you. The bastard.and by the way, Anonymous? This kind of treatment is not what happens in socialized medicine. This is medicine practiced by cruel, self-obsessed incompetents in a cultural backwater that refuses to join the civilized world.

You are something. You are a friend and one of the best I've ever met. You are a writer still, because you write posts like this one that breaks down boundaries, tells the truth and changes lives. You are an athlete because living through each of your days requires more strength and will than running an ultramarathon. But most of all, you are a friend. You are Elizabeth. My friend, my sister.

Maggie said...

Hi Beth-
I hope you are enjoying the gifts and mail that Linda returned with. Thank you for my super special frog present. It was way cool.
As for the others...I'm sorry that your doctor is one big screw up. I'm sorry that he is now trying to blame your current condition on "not getting to Seattle sooner", and I'm sorry that he didn't treat you the way we knew you needed to be treated.
As for your blood family, you and I have talked about this before, although I'm sure you don't remember much. I wish I could tell you to walk away and have it not hurt. I wish I could offer the love and acceptance you desire from your parents and have it count the same way. Instead, all I can do is offer my love and support and have it count for what it is...true love and true friendship.

Veralidaine said...

Another beautiful post that aches to read. Your doctors should all be ashamed of themselves. What happened to the Hippocratic Oath?

If a person wants to live, they deserve treatment, no matter how hopeless the outlook. Why should a doctor have the right to dictate what an extra day or two would mean to someone else? If it was him facing death any day, I bet he'd be looking for a way to hang on rather than caring about what level of "priority" he should be to the medical system.

The shorter the rest of your life expectancy is, the larger percentage a day or a week represents. Why can't your doctors understand that any little bit of treatment or even proper palliative care might give you another day or two to hold Linda and be held by her?

I have an answer to your question to Linda, "What am I that is more than my disease?"

You are family, to me, to Cheryl, to Yanub, Wendryn, and many others. Am I your adopted cousin because of your disease? Hell, no. We met because of your disease, but if we met while playing badminton, would that make you nothing more than your sport? The part that is MORE is the part that you choose. MSA didn't force you to reach out to strangers and give love and friendship without expecting anything in return. That's not a symptom of MSA. It's a symptom of a kind, generous person who wants to make a difference.

You have done so, over and over.

FridaWrites said...

Yanub, I just read the same article, though I found it through another link!

I sent emergency manga too, though someone please order the supplements!

Lene Andersen said...

p.s. That was supposed to read Cheryl, not zero. Dragon interpreted me creatively and i didn't catch it. Cheryl is most definitely not a zero.

Olivia said...

Hi Beth

It seems to me betrayal by family is one of the hardest things to leave behind you - if a friend does it you can cut them off but it's so hard (impossible?) to stop hoping that your parents will care, will react differently this time, will show a little more humanity. I've seen this with a good friend (not myself though, I'm very lucky with my family).

Beth I was thinking the same as Lene on the 'who are you' question - a writer! a blogger! Look at all these people turning up to read your every eloquent, honest or desperate word. And many of them consider themselves your family too. You truly have built a community here. It may be small comfort to you now, but it is real.

Elizabeth McClung said...

Frida: "emergency manga" - I have to love you for that comment - I mean, the idea that Manga can cure ills, I love that idea. At least I can be somewhere where it doesn't hurt and girls always have hidden superpowers (or fencing powers!) I really like that phrase Pallitive people are people too - because people, including ME forget that; they have a life of experience they look through and desires, and hopes. Well, I hope to have hopes, but you know what I mean.

I have NO intention of dying, it just seems that like new year's promises, the best of intentions sometimes get broken. Ug, afterlife, it sounds like going back to school again! I am glad you liked your postcard, there is one coming. I wanted to make sure that you knew with your surgeries that I remember. I think that is what most of us want, to know that people remember, and care. As for me, hmmmmmmmm....I want to live until Bones season 4 comes out -and I hope that is SOON! Just in case!

Anon: Basically if you live where a teaching hospital is or a univeristy, you will get better doctors - here is a high population (30%) of people over 65, and few resources, so even my grandmother who lives like the rest of our family into the hundreds can't get simple surgeries but gets less care than I and she is in her late 90's. If you are in a car accident - socialized medicine is great. If you have a degenerative disease - not so great.

Kate J: thanks, that was a nice surprise and not at all what I was expecting. Cheryl is arriving soon and I am sure she will bring them, it is kind of you to do this, another postcard for thee - did you get my last one, wouldn't it be grand to go sailing there?

I always wish we had met (but ALL those B roads, ug!) and that I was well enough to travel and meet people instead of stuck on this island. But I guess I am becoming buddhist because I find acceptance easier (or just hundreds of days of anger tiring, hard to say which). I only recently figured out that I was an orphan and it made sense finally as all the questions that orphans have, are the ones I have; "why, what was so wrong with me? Why don't they like me, they don't even know me?" - I am glad that you have a family that is what a real family is - ours was a gloss of Christianity, all show for the crowd but now we see, not built for the long haul or tough times.

Anna: I have been in the same place, talking to someone with cancer and on a ventilator, lending them DVD sets to watch instead of asking them the real things, 'don't you hate this room?' - 'what do you want to do?' She died before I asked any REAL questions or let her talk about real things. We can't go on enough about birth, we film it, but death is something we just can't talk about; we would rather talk politics than dying.

Much like to Kill a Mockingbird, I read to women who were dying to help them focus on something other than the pain. I would do that still I think, if I could. I would want to be usefull, and maybe reading is something I could do?

Yanub: Yes, it is like, "Oh, I don't have a protocol in my book for that disease, are you sure it isn't MS? No? Well, I'm sorry nothing can be done."

I am definately going to read the article; and what you say is very true, I know Linda and Cheryl in thier own ways probably are withdrawing a little, I know Linda is. Most of the people I was 'friends' with in real life here in town are preserving themselves and I think a lot of readers are. When I do the 70+ postcards I wonder, "Will this reach them after I am gone? Are they expecting something insightful instead of 'Hope those plans came through and you have a great day!"? - I don't know, I can't stop thinking about it, living it. Linda just asked when the breast cancer one was, I said October, she said, "Oh, no point in signing up for that." I am going to sign up for the TC 10K. I would like a training wheel race before that. But this time, I don't care how sick I am, I want to be in my chair at the TC 10K - that will give me national ranking and for all the people who don't want non-SCI ranked partial quads around, then there I will be, and I don't care if I look so bad people vomit, I will be there, and I will be there at the western track meet too, even if I am the slowest wheelchair racing, I will BE THERE. Because I don't care what disease you have, nothing should be barred for you, if you are approved, SCI people shouldn't draw a fence around events. So, Les Autres (the Others) are going to show up, if I have to drag myself down the track!

I have wondered if I could do an advice column: ask a dying person. There must be someone who has questions?

I would love Seattle to go, "Oh, we know this, just tell them to do...." - I don't know how horrible it must be to watch a person who literally is having thier brain burn, being ripped up, and trying to figure out how to be 'normal' - what is normal or a good time, a good day is a day where we had fun BEFORE the seizure. How do you explain that to anyone? I hope you have a support group you go to.

Exactly, apparently it is not December anymore and new manga is out! So lets get to reading!

Lene: There is sort of a facination for me on how low he will go - I think the X-ray broke me though - I said to Linda "let's go to a shoe store" and she told me that they got rid of X-ray machines there ages ago. "What about a dentist?" "Or a vet?" - I mean, does this man have a no licence and is trying to hide that, has he been banned in multiple countries and hiding from the law? What is the issue?

Yes, it was posts just like this that got me out of the BBC; the word length is all wrong! Well, I could have dropped the parent stuff but sometimes knowing the intimate helps understanding. Helps make pain real. Knowing other people look forward to a movie coming out while I have people saying, "We'll go to that, once Elizabeth is dead, we can go together." - that's real.

Yeah, one thing we both know is how much it hurts to go on, and yet we do, because we are nuts or we have guts! Say hi to your mom and tell her a postcard comes.

Maggie: I am glad you like the present, I haven't seen yours yet but so far it appears I live in a train station. People in and out. Phones off the hook. Maybe I am in a pyramid scheme - die first and you can eventually make $200,000 as you recruit other people who will die....sorry morbid humor.

I wish I could stop wanting a family, or my blood family to care, but they don't. They care more about coffee and a good place to get it than me.

Veralidaine: Well, I can't help but agree, who knows what I feel in a day, and who knows the value of laughter in a day of pain? They don't. In the book Dancing with Mr. D - the doctor working at the hospital for the dying explained to the VERY important man that yes, his wife was in pain and no, no one would come, becuase if his wife had a CHANCE, see, the NEW hospital just spent 50 million dollars to detect a certain type of cancer cell to help CURE. But if she is dying, she comes to the OLD hospital where there are not enough people to help with pain management or even take a shit, and that is how our society puts its value - on the living, not the dying. Well, one is the other, better they look and learn sooner than later.

Thanks, now I am misting up, I thought that was what people were supposed to do that with my posts, not ME doing that about the responses - you are a powerful and an open and sincere writer too.

FridaWrites said...

I read yesterday that one Canadian hospital only gets to put in 5 defibrillators a year. What do the small US ones do?--5 a day? But the Canadian woman said they can do another 5 next year....

I do think rationing there is a problem.

Abi said...

The attitude of your doctors stinks. I have heard of many people who were quite blatantly dying, yet the doctors gave them treatment either to give them a chance at maybe living, or to improve their quality of life. I know that you have often made doctors feel uncomfortable with your rare diseases and excellent powers of logical reasoning, but that really is no reason to let you die, just like that. Why do they not feel accountable? Bastards.

The postcards you send to me do mean a lot to me. When I get one, it is always after a day of work. I never read it straight away - I put it to one side, make a cup of tea and settle down. When this has been accomplished, I am allowed to read your postcard. It must not be rushed!

After it has been read, it goes on the mantelpiece, or comes to work with me. I think that I will have more display space in the new house (I will send you and Linda my new address quite soon - when moving is nearly upon me, and when I know the postcode!), so I can have a lot more postcards on display!

I don't like these conversations that you are having - the ones with the meaningful pauses. I don't like how you are doubtful about planning for the future. My advice is to mostly go on as though everything will be OK and you will not die - there is no point in putting your life on hold just because it is about to end. Maybe. You never know, and if you are still alive this time next year you will kick yourself for not having done some of the stuff. Go ahead and make plans - it's not as though you will be upset if you don't manage to keep them! Try not to make the plans too immediately expensive, and you have very little to lose.

I remember the last Luminara festival. I was in Bordeaux with my two sisters. Yours was the only blog I made sure I checked every day. I feel all nostalgic about it now!

SharonMV said...

Dear Beth,
I know what it is like to be alone in a room, stuck at home, with no visitors, abandoned by family members for years. So many anchors & touchstones lost, but I still had my lifeline. And that lifeline is so much stronger now because of knowing you. You, Elizabeth, you are a part of my heart and you will be for the rest of my life.

Why do people turn away from the sick & dying, the very people whom they should care about & help? What kind of Christians neglect the teachings & example of their own savior? What kind of people deny the serious illness of a friend or family member just to protect their own comfort? The false comfort that illness or terminal disease will not happen to them.

What kind of doctors pay no heed to their own oath? "First do no harm". To deny care is certainly to do harm. To refuse to investigate because the patient isn't sick enough (yet) or doesn't fit within a certain box, does harm. To treat patients according to the doctor's own judgment of their character or personality does harm. To dismiss sick people just because the doctor doesn't know what's wrong does great harm. Not to treat clinically proven condition is untenable. To not provide proper medical and palliative care to the dying is unconscionable.

I love you, Beth, always.


Nancy said...

It's really heartbreaking to think that so many people are missing out on health care, under both socialist and non-socialist systems. Surely there must be some sort of compromise position that maximizes caring, somehow?

On a totally different topic, I have just discovered Shakespeare Manga. Which is great, because I'm teaching a Shakespeare class this semester, and I need interesting things to hold up as visual aids. :) Anyway, it reminded me of that great postcard you sent me, where you said the boy looked like a brooding Hamlet. So I wanted to let you know that you helped me to discover a whole new subgenre! Thanks for that, and for all the new ideas and images on your blog.

Bells said...

Beth, I just read every word in my lunch break. It all cuts pretty close. We just lost a dear friend after a four year battle with cancer. He could never articulate what those last days/weeks/months were like for him. He just said it was fucked and said he was pissed off he was going to miss the cricket.

Reading your words makes me get a little bit into what I imagine his headspace was like. So even though I really hope you are here for all those things you feel you can't plan for, I wanted to say thank you for your words.

Joan K said...

I'm thinking of you and wishing you some peace. I'm sorry about your family's inattention. It is funny, you are a far better person, dare I say Christian, than they are.

I ordered a book from your wish list. I think you'll get it in a couple of days.


Raccoon said...

Does this mean that we're not going to meet in Hawai'i?

Okay, the Doc doesn't want to treat you. He tries blaming (the three of) you for not getting to Seattle sooner?!

At least he finally gave you enough drugs.

Your family -- I know that I've said it before: your family is/are the people that support you here. Biological? Nature versus nurture. I'm believing in nurture at the moment.

Raccoon said...

On Linda talking about watching...

At least with animals, pets, it's often the human that makes the choice.

Yes, I know: pets aren't people. That doesn't help when they've been with you 10 years, 12 years, 18 years... You still see everything that's happening and then you have to make a choice and then... And then all you've got left are a handful of pictures and your memories...

I'm sorry. I just got the ashes back. She was 19.

Victor Kellar said...

Another tough yet beautiful post. So much to think about. Like how cowardly are the people we need to depend upon, like the medical profession and your family ... Like how it must be hard for you fight when you know what the outcome will be. Like how, as a society, we have no skills to deal with death though it is such an obvious part of existance, one of the few universal things that we have in common

wendryn said...

Beautiful pictures that fit a very hard topic perfectly.

I'm sorry your doctors are so useless, and that your family is worse. That is a very hard thing to accept and make peace with, speaking from limited experience (my sister).

Dying is something no one wants to talk about, which makes it even harder when you are in the midst of dealing with it. I'm glad you wrote this, that even now you are pushing people out of their comfort zone. Go with your strengths! :P

I wish there were more I could say or do, but please know this - I'm here, and even if I'm not blood, you are Family to me.

cheryl g said...

Even though we had a conversation about this while I was over, this was still a hard post to read. I am torn between knowing you are dying and trying to stay firmly in the land of denial. Finding you semi-conscious on the floor is nerve wracking. Slipping onto EMT mode where I note the time started for every medical action I take in case I need to provide the information at hospital is not a comforting place. I try to not let these thoughts occupy the majority of my mind because I don’t want to treat you like “dead girl wheeling”. I want to treat you like my sister who I enjoy spending time with.

I imagine the loss of your anchors is incredibly painful for you. These anchors also help define our lives and us. For example I am Beth’s sister, a member of the National Park Service, part of a large blood family, and loved by cats… these things define me. It seems in your interactions with others that they treat you as extremely sick and dying. They define you by your disease and by the perception that you are dying. I know I am guilty of that as well at times. I try not to do it but I know I don’t have a 100% success rate. You are not your disease and I apologize for every time I have made you feel as though that is how I see you.

Every time I think about that visit to your GP I get angry all over again. I wasn’t aware that Linda had the ability to swear like that but I totally understand the need to swear. MY. GOD! His refusal to send you for x-rays for the foot is the most asinine, capricious, cruel act I have witnessed in a long while.

I really like Veralidaine’s answer to the question "What am I that is more than my disease?" I think I will hold her answer I my head and heart because it is very true.

Neil said...

I know what you are, Beth: you're a goddess. You're a teacher, sometimes you seem to have infinite forgiveness in you (but not today), you;re still trying to get some justice - or treatment, which seems to be the same thing. Those sound like Jesus to me, so you must be a goddess.

Yelling at each other isn't great, but I understand the frustration that's driving you to it. Just remember to hug and make up when you can.

Still here, still trying to send strength and positive energy to you, and Linda and Cheryl too, and an interesting life to your doctors.

Zen hugs,

Kita said...

Dear Beth,

I have been sitting here for a day and a half just thinking of how to answer your most painful, private beautiful post. I have no words for you, so I took a loan of this song. I am more musically inclined than anything else and I hope your find the same solace that I find. The song is called 'Waiting for my real life to begin', by a Scottish guy called Colin Hay.

Any minute now, my ship is coming in
I'll keep checking the horizon
I'll stand on the bow, feel the waves come crashing
Come crashing down down down, on me

And you say, be still my love
Open up your heart
Let the light shine in
But don't you understand
I already have a plan
I'm waiting for my real life to begin

When I awoke today, suddenly nothing happened
But in my dreams, I slew the dragon
And down this beaten path, and up this cobbled lane
I'm walking in my old footsteps, once again
And you say, just be here now
Forget about the past, your mask is wearing thin
Let me throw one more dice
I know that I can win
I'm waiting for my real life to begin

Any minute now, my ship is coming in
I’ll keep checking the horizon
And I'll check my machine, there's sure to be that call
It's gonna happen soon, soon, soon
It's just that times are lean

And you say, be still my love
Open up your heart, let the light shine in
Don't you understand
I already have a plan
I'm waiting for my real life to begin

JaneB said...

Another beautifully painful, precise piece of writing. You ask what you are that isn't your disease? A writer, a teacher, a beloved friend, an example of someone learning, striving all the time to care better and be better - you are a wonderful person, a PERSON as well as a collection of health problems.

And I hope there is a manga from your wishlist from me in your postbag as well...

Not even going to start on my opinion of your Drs disgraceful attitude... you know, we all know, it just isn't right.

TJ said...


I read this post yesterday and reread it again today. I just don't know what to say. To be twice the victim - once of the body, twice to the system, is the real bitch of the whole thing.

I hope you got your wheeling gloves for outside, and I send you a gift card for some of that "emergency Manga".

Like all here I wish there was something more I could do other than read, nod, weep, and shake a fist at the unfairness of it all. Alas, I'm as helpless as the rest and it breaks my heart.

Your words, poignant, sorrowful, raging, loving, and everything that YOU are mean so much to me. Please just take care of yourself. Your book and the postcards that I have from you will never do as a surrogate. They are paper. They are clouds shadows and you are the Earth. Stay here where you belong.

Tom P. said...

But also, I am alone, because I don’t talk to anyone who understands what it means to be treated as death, to wake knowing THIS day could be the last, and yet, to go on.

It's true that we do not know what it means. But you have Linda and Cheryl to be there to help you fight. I am thankful that you are fighting and not willing to let today be your last day.

I hope you can find better doctors. Michel sees a doctor who specializes in pain control. Many of his patients are terminally ill but he fights for them. Not every doctor turns his back on the tough patients.

Dawn Allenbach said...

I wish I had the vocabulary to express my disgust with doctors like yours and my brother's. Keep putting you off and putting you off until it's too dangerous to do anything.

I'm sorry I've been so absent. I miss you so much. I'm allowing my academic life to consume far too much of me.

rachelcreative said...

You are an amazing woman and you have changed me forever.

Your outlook on life, your writing, you sharing the most painful and difficult of times. The insights you have given me and continue to give on dying and living. All these things are now in my heart and my mind. Your gift, your legacy includes the broadening of this mind and mnay others.

So many eloquent comments here.

I can't start to think about the lack of care from the medical side of things - it makes me so incredibly angry and sad and utterly helpless.

Life is, quite literally, too short not to try and do the things you want. To strive to do the things you're here to do. To share the gifts you have been given.

Elizabeth McClung said...

Olivia: yes, it is true, I still want what I wanted as a child, to be loved by my parents and siblings, and to love them. I can't stop loving them, but the pain of knowing that things will never change; I can stop chasing the dream but I can't stop the pain.

I am happy I have a community, and it is that community which helps me keep writing, I have learned more about myself here, in how I write and react to comments, how I have to think things through as blogging. I would not be the person I am now, which I think is better than the one a few years ago, if it were not for the blogging community.

Abi: I am glad you like the postcards, which is also an encouragement to send you more. And thank you for telling me how they matter in detail.

And you are right, I need to wack myself on my head a few times and live for the future. We got a present from Jane B yesterday - a YEAR'S subscription to tea's of the world. I told Linda, of us who won't put down events for summer that Jane B has put us to shame. She has more belief in me than I do, so get my act together McClung!

Luminara here I come, but the TC 10K first!

SharonMV: I know of many people who are sidelined, put into the rest stop and forgotten, thier name read each week at church as if another week in OUR lives, the ones with jobs and careers and REAL and important things matter but THEM, those names read each week at church, what is a week to them? (that seems to be the attitude). I feel I work harder, and struggle more to do less than I ever did when it was easy. We used to do jobs where we didn't have to face our souls and scrape the very nature of our limits daily. We are the important ones, we are the ones to learn from and yet....

Let's just be glad Jesus didn't die today, I don't know if there would be ANYONE around to pay for a such a nice burial for him. I think if I was Jesus I would be a bit narked (frustrated) that everyone rips off teachings and has What Would Jesus Do wristbands but no one would actually give the upper room he had the last supper in or do a burial from which he was ressurected - is God allowed to yell, "Dumbass!"?

I think of you daily and feel the bond between us Sharon.

Nancy: I am very happy to assist in converting more people to the addiction of Japanese anime and Manga - actually there IS an anime called Hamlet which is redone, and another one called Romeo and Juliet - Shakespeare shows up in most Shojo manga from W. Juliet to Penguin Revolution - I mean, how can we have the shy people kiss without Romeo and Juliet?

Bells: I am glad I wrote it, with my care worker breathing down my neck. Yeah, that's it for me, it is the little things, like not watching Bones with Linda that I will miss, that I can't imagine a future without. Also, the realization that in a society where it is all, IF you do X or Y or Z that there actually is random chance of bad things and when such happen, we ignore them - if EVERY person who ran a cancer fundraiser also VISITED someone with cancer, I don't know, maybe there WOULD be more acceptance, and less fear.

Joan K: thanks, I will look forward to it. I am not a Christian by choice, or even trying to be a good Christian, I just feel that to know good and do otherwise is wrong, and I will not do that. Not if it is humanly possible. Which oddly puts me as a Christian/but also Buddhist I think, more since I have been sick - you have to accept and do less praying, "Oh God, the great vending machine in heaven, please accept my wrinkled dollar today and actually give me the damn cure instead of just rejecting it like you did all those other days!"

Raccoon: Today in the mail I got my packet from the Hawaii tourist information branch, so I think it is still a go, since Abi kicked my butt into gear.

I am grateful, I would like people to see publically how great it is to have people who care. For every person who has slagged blogging I wish they would come here to see what a difference blogging can make between people - and if it isn't about learning and changing and being closer to people much less helping them when and as we can, then what the HELL is it about?

Victor: I will keep talking, that is my way of fighting, to talk about what doesn't want to be talked about. Oh heck, I've broken enough taboos let them hate me for dying in a broody, emotional, splatacular and drawn out way. I am not the one who is dead and yet they treat me like that. Hey, if I had the choice I would keep pushing the 'LIVE' button.

Neil said...

Raccoon: My sympathies to you on the loss of your beloved companion. Yes, they're only a cat or a dog. And yes, they are also loved, capable of loving, and capable of hurting. And when we love them, we will miss them as they fly away. We couldn't take the ashes; I just couldn't deal with that. I gave our cat a final cuddle and had to walk away. Four months ago, it was, and I'm crying again just thinking about it...

Beth: I know you won't approve of the goddess suggestion. But thank you from the bottom of my heart for blogging, for teaching us what it's like from your point of view, for telling us how much you are loved and how much you love Linda and Cheryl, for caring about people, and for being an example of a good human being.

I'm still with you, and will walk or wheel as far as you do in the next 10K event.

Love and Zen hugs,

Stephanie said...

Oh, Beth. I know that I can't wish for you to get better, but I wish the medical system weren't letting you down so badly. You need my mom as a nurse. She tends to be praised for being there for people who are dying. Alas, she's working in California, nowhere near you. Regardless, here's another person who is holding you in her thoughts,

SoulCrew said...

I have been reading your blog for a while....but I missed some, and now I come and see this. I am ashamed to see how you have been treated. How Linda has been treated. Like you don't matter. But you DO matter. Whatever state (Physically or mentally) we are in, we still have something to offer, and for these 'professionals' to write you off so damn quickly makes me sick.

Have what you desire. Enjoy your time as best as you can, and thank you for reaching out to me in your post.

Peace and love to you both

DaisyDeadhead said...

Delurking to say, my thoughts and loving novenas are with you, Elizabeth.

A. J. Luxton said...

I treasure the postcards you've sent me, too. Small talk may not be supreme pearls of wisdom, but the fact that you care and that you reach out is insightful in itself. Your tenacity is reminding me that I should stop kicking myself over opportunities I've never pursued, and go pursue the ones in front of me, whatever they are and however flawed they might be.

I am sorry I had a migraine last Friday and couldn't go out (mail doesn't get picked up at my house for some reason) so I sent two postcards this Friday to make up for it and used them to tell a story of how I am responding to your influence on the world.

Never That Easy said...

I've not been here before, but I just wanted you to know that your post was extraordinarily moving. I can't tell you how sorry I am for how your doctor and your family are neglecting you, or how lucky I feel that you were able to share this with us.

I don't know very much, unfortunately, but I do know that you are so much more than your disease, even now - especially now - when it feels like you're not.

S. said...

I don't know what to say, and I'm sorry for that.

I did want to tell you, though, that you sent my boyfriend a postcard a couple of weeks ago, and it made his day. It hangs on our wall (the side with stamps and stickers, not the photo side). Even from that one small act I think it's obvious you're much more than your illness. You have art, you have compassion, you have humor and interests -- and all of that is just what I can infer from the back of one post card.

I hope things improve -- I hope people realize you continue to LIVE -- and you're in my prayers.