Tuesday, July 22, 2008

Working on postcards, and my nihilism; dreams of being skinned, skewered

I spent a great deal of time today showering, getting dressed, doing laundry and then working on Postcards. There are four to five stages to each post card before they can be posted. I have three postcards finished and another 27 to at least stage one, 11 of those to stage three. The first stage is matching the right card with the right person, trying to find something they might like, something beyond just a picture. I have to hope that in spending time I might be able to find something that a person will find special. Here is less than half of the matched cards that I am sending out this week.
I wrote up a small piece with more pictures, and more about the woodblock pints in the other blog, The Postcard Project.

The last day or two, and particularly today I have been fighting a nihilism which is stronger than I can remember. But then that is the problem; what do I remember? I cannot remember a time when sleeping was easy, or I didn't overheat in sleep; cannot remember a time before the summer, I am time bound, house bound, pain bound (I am brain bound....damaged). I cannot remember, literally, what it means to be thirsty. I cannot remember what it means to wake up to a future. Tonight we sorted all my 'business clothes' to sell off; suits, and blouses because a) I will not have a job and b) I am half the size now.

This weekend I got something back from my disease, I got the chance, the choice to have a day, a half day of sitting still but being present when fun goes on. It may cost a day at the start and at the end but now I can travel to Port Angeles and beyond. But also, the cost, which used to be absorbed in afternoon sleeping, or overnight sleeping; is not felt hours later but is now felt in minutes. I take a boat and the back and forth exhausts me. If it is late in the day I either have a seizure or lie insensible, until time to be carried ashore, to be put to bed and start paying the other end of the price. But I have that choice now. I did not before. That should mean something right?

I have not cut myself, though I know not why. Am I so good at resisting or so tired? Yesterday, after a day and a half of working and thinking, I finally wrote something worthwhile, something that matters. That piece on biology and disability is more important than any academic paper I went to a conference with. What I wrote today; this does not matter.

I have a wish, a strong desire; I want the hospital to come and operate, to take out all the parts that can be donated. I want them to cut me open and take out my organs, take out my eyes, cut away and peel off my skin, leave me there on the machines. Take it now, while they are still worth something to someone. I cannot tell right now emotionally the difference between the future in that wish, and the future of waking up every day. They feel the same.

I hate to sleep, I hate lying down and the pain, the pain coming in and in; I wake in seizure or because of the pain, sometimes in heat exhaustion and trembling, but not refreshed. Maybe I did once, but I cannot remember, literally.

There is a Russian Song, koni priviredliviye, which the singer sings that his horses and carriage are on edge of the cliff but he must keep whipping the horses (that he is driven, his life driven but still he must go on). I don’t even feel that control, I feel that I am a hearse carriage, without driver, and the horses run on along the edge of cliff, while I lie in the coffin, waiting.

So some feelings of loss of control? Some pain and heat influencing my thinking? I don’t know. I actually am so used to pain along with a certain lack of feeling I have thinking of finding something like a meat skewer and seeing if I can run it through my body, but slowly. I want to see what I feel, what kind of pain there might be.

That’s not happy thinking right?

Yeah, I know I’m a coward, yeah, I know that most of my readers have conditions worse or the same as I and have lived it longer than I. And apparently they don’t despair. Apparently they don’t see a wall where-ever they look. I don’t know why it is that I cannot be a better person than this right now. I remember after one nap a few days ago that for a few hours I had a feeling of peace. I don’t want to lose that memory. I will lose that memory. One, two, three seizures and it will be gone.

I know that dying is easy. I don't do easy right? I also know that sometime in the last week, I tried to leave, that’s my confession.

During a seizure, having passed out, I found it, that place, it was bright and calm and I didn’t have to think or worry about anything, and I didn’t have to breath, didn’t want to; as long as I stayed in the light. but one of my care workers brought me back. And I kept trying to pass out again so I could go back into that light, but it was gone. That’s my confession, that I didn’t fight. That I found someplace that felt good and I didn’t want to come back here.

But I am here, right. I’m supposed to want to see what happens next.

Is this a chronic condition thing, or is this just me? Weak and cowardly me. Why is it wrong to dream that people take the organs and eyes and skin from me while there is still use to someone in them, why am I supposed to wait until no one, not even I, can make use of them?

Honestly, this is what I think about. These are the thoughts that come to me. I was annoyed earlier becuase I was in so much pain and I couldn't find any scissors or knife within hand or arm reach to mark that pain upon me. No way to mark it and no way to end it. These ARE my thoughts. I'm sorry.


JaneB said...

I'm so sorry that you are in such a dark place.

But as you say "These ARE my thoughts". I hope recording them, trapping them in words, cutting them into the record, gives you a little relief. And thank you for having the courage to report from where you are, however grim a place that is.

Hope tomorrow is better!

SharonMV said...

Dear Beth,
I do despair sometimes. Even though I know I have a future and possibilities of being better than I am now. You are a good person and of use NOW, as you are, to me, to your other readers and friends and most importantly, to Linda.

I don't blame you for not wanting to come back to a world of pain and loss. But I want you to listen to me now - the physical pain you are in is too much. You need better medication, you need help to lessen the pain. You need to get it ASAP. What is going on with the referral to the pain management doctor? I know you can stand it, live through it, best it sometimes, but at what cost? Do you remember a day when the pain was not pervading your body & mind? You have a strong spirit, you have found a way to go to Port Angeles & be with friends. Now use that strength & creativity to find a way to get better pain management now. Make it a priority. Maybe it won't change your future, but it will change your present. Please, this is something that can be helped.


Kita said...

Dear Beth - never ever EVER appologise for being you. I understand (not completely, but enough) your thinking. Good for you for NOT self-harming, you have more guts than you think. The 'dream' of having the docs taking your organs to help another - well, that is you. Trying to help others. You may not realise it, but the very words you type help others.
Please dont self-harm. We both know where that leads and it is not a nice place. I know that your head is not in a nice place right now, but as the hours pass, I hope you find that 'peace' you have experienced - without dying. Dying does not help! Stupid question, maybe, but have you tried meditation or the likes?

Much love for you, Beth. And to Linda and all the others who help you. Take care.

Anonymous said...

You are no coward. I'm sure there are some people that don't know you that are surprised you don't feel like this ALL the time with what you have to go through combined with crappy doctors.

My medical stuff isn't particularly disabling, but I used to suffer with severe depression for years. I know it's different for everyone, but I know what it's like to be emersed in a blackness and to find some relief and want to stay there. At that time only the relief from the black makes sense.
You say this kind of stuff to people, and I've always found that people close to you get a bit angry. I guess, understandably, they feel that it's selfish, that you don't care enough for them or the effort they put it or don't care that they care anymore. I hope people around you understand. Anger from others just makes you feel more guilty/cowardly, and makes the whole thing worse!

Feel like I'm blabbing but just want you to know how important you are. You are exactly the opposite of what I would call a coward!! You push yourself to do so much, to continue to be yourself in a body that's failing you when the easy thing would have been to give up on racing, random sporting stuff and even postcards, a long time ago! I really admire and respect your strength, but at the same time, I want you to know it's ok not be Super Beth all the time. We'll all still admire and respect you and your strength.
I hope I don't sound patronising or anything, I don't mean to be! I've never posted before, but regularly read, and just want you to know that in dark times, the world wide web is thinking of you, and wants to give you a big hug and many Goth Hello Kitty stickers!

Debbie xx

Shea said...

I do not think you are a coward. I think pain takes away all reason after a time. My husband lives with chronic pain, and at one time begged to amputate his leg. He says he was suicidal at the time though he never told me. He was on so many meds at the time he really does not remember the birth of out last daughter. Though it is much better, we lived through that for a good while. I so wish you could get better medical care that what you are receiving. No one should have to hurt like this.

Neil said...

Hi: Since I'm fairy certain that you're not some sort of superhuman being, I see no shame, no cowardice in wanting the pain to end. You're feeling selfish? Welcome to the human race, Beth; we're all selfish at lest some of the time. You want selfish, you should meet my oldest son's ex-girlfriend. No. You shouldn't meet her; you should meet better people who aren't wasting your time. Nelson Mandela: you should meet him. Or rather, he should be privileged enough to meet you!

The light you report seems to be a common experience for people with close approaches to death. Perhaps, then, there is something after death? I think that maybe I will not fear death so much after all.

Hmph. Who says it's not an important post?

Zen hugs, dear, always,

KateJ said...

A coward? No, anyone less like a coward than you I find hard to imagine. Being scared is not cowardice; I'm always reading about people "battling" cancer or "fighting" Aids, but I can't imagine that people - especially if they're still young - faced with a deadly disease are going to say "Oh well, that's it, then, I'll just give up." They fight to survive, to get the most out of what is left of their lives. That's certainly been the case with people I have known and loved who have had cancer, Aids, Cystic Fibrosis or Motor Neurone.
I don't claim to know how it feels, what you are going through, and sincerely hope I never have to find out. I just hope that if I ever am faced with serious illness, pain or disability that I am able to deal with it in the way that you have. You are one of the bravest people I have ever known.

cheryl g said...

You don't need to apologize for being honest about where you are now.

I want to go find your GP and force him to get you better pain management. I know for myself that the constant, unrelenting, extreme pain fuels the feelings of nihilism. I wish your pain was as easily controlled as mine.

I do believe the unrelenting pain and the heat are influencing your thinking. Even when we become "used to" the pain it wears on us and beats us down. I have found that in looking at my worst bouts of depression, they are always at times when the pain levels are extremely high and I can't get total relief from it. Even though I am "used to" a certain level of constant pain it still wears on me and exhausts me. That exhaustion lets the demons get out of their cages and begin a merry romp in my brain.

I do want you to forget about the meat skewer experiment. If not for your sake , then for Linda's or even mine.

You encourage me to take TLC time for me... well, I gotta do the same for you.

To borrow from Neil, many zen hugs for you.

Lene Andersen said...

Oh yes, there's despair. Despair is part of chronic, debilitating conditions. Fear of the future with no relief, fear of losing whatever ability is left, fear of what happens when you can't, just.... can't, anymore. Because you know - ok, I know, I won't speak for anyone else - that there are times where the thought of leaving is so very sweet. And then you pull back, stay a while longer, but the thought that you can leave, that the option is there is sometimes what makes you stay during the hard times.

And then there's the fact that you are dying and likely much faster than many of us and how can despair not be part of that? I get, I think, why it's difficult to stay when it's so hard and painful. I am glad you're still here, I will be glad of however many days you grant me of knowing you, but I know that one day, you will have to leave. Because there's more than one way of flying and you're Beth and you fly in all you do.

Don't be sorry. These are your feelings. You tell the truth and we are here to hear it for as long as you will share it.

Perpetual Beginner said...

Beth, sweetie you are the last person on the planet I would ever consider a coward or any kind of weak. You've been fighting this far harder and for far longer than I would have thought possible for anybody. It's no crime to be tired, scared, nihilistic, and to just want the whole thing to stop. Yes, we love you and we want you to live, but it's a selfish wish. I know I don't want you to stay and stay and stay, suffering the whole while, just because you're afraid we would stop loving you if you stopped, and I'm pretty certain I'm not the only one.

Wendryn said...

You aren't a coward. Everyone despairs at some point - it's part of working through dealing with hard things. You are dealing with pain and looking at death and trying to live, having to be dependent when you have been so fiercely independent, and watching the people around you react to what you are going through. It's hard stuff, and it's completely expected that you will have a hard time of it.

You are still sending out postcards. You still write. You still give us, your readers, a little window into your life. You are braver than most, and stronger than anyone has a right to expect.

I'd prefer, for selfish reasons, that you don't go looking for that light. You've become important to me over the years. It isn't a cowardly thing to want to stop fighting, though. You are tired, and it is hard to go on. Please don't beat yourself up over that, too.

You have my support, my respect, and a supply of very bad jokes. :) There isn't much else to say, other than that I'm here, and I'm listening, and I care about you.

rachelcreative said...

This doesn't seem like a helpful thing to say but ... you are in a much worse condition than me and you deal with all of that a hell of a lot better than I do with my little pile of cr@p.

It's not a competition Beth. And IS dying easy? What's that famous poem about not going quietly into the night?

It's your life, your death, your thoughts and all are very important because they are yours.

It sucks to have to kind of grieve your own death. I so want you to find that peace you spoke of in life and in dying.

Bugger any rules - if indeed they are any rules.

Anna said...

There can't be a right way and maybe not an easy way to cope with, disease, not dying or dying. There can't be....can it?
and your thoughts, hey aren't they normal? Or at least natural?

I've never experienced that out of control feeling because of physical diseas, but I have from mental illness. I had periods of depression, confusion, memoryloss, anxiety almost every seccond year from the age of 17 to 30. Even if I knew I would snap out of it after a cople of months, those months felt like a timeless zone. Eventually I learned to wait it out. When I had a backlash this winter, my sane me said, "wait, endure, wait, let time pass and it will go away". It always does. This time it only lasted like two months, but during those months I had got into complete panic when my mind would do things I didn't want it to, and didn't do things that I wanted. Everything could suddenly become dangerous, and the fear got so intense that I wished that I would have passed out rather than felt the fear.

Sorry, ramblings here. I just hope that your nihilistic mood fades and that your body doesn't turn on you to badly.

Thank you for the seccond postcard. Liked it even better since it has both men and a women in it:)

Victor Kellar said...

Beth, I have no great wisdom to give you today. Only that even we who are not looking down your tunnel have moments of doubt, of uncertainy, of emotional pain and confusion. It does not surprise me that you are experiencing these emotions. What you express is not cowardly or weak; perhaps it is clarity, perhaps it is a glimpse of the future, I don't know. You have materialized those feeling with your words and maybe it will help you, it usually does for me.

I don't know if what you need now is motivation but here is my bit: You have presents coming from this address. It will take some to reach you (there is a journey from Japan to Toronto to your post office box to complete) and it will take you a while to fully enjoy it. If your postcards give you some motivation, perhaps this small token will as well

Take care

Laura said...


Meat skewer not a good thing. It also looks like a big giant needle.

Me thinks thou art thinking too much! Grab some DVD's, watch something, think about that.

I don't have the answers Beth. We all have bad days but with your condition you seem to have a few more than some. I hope that someone will have some answers for you.

You are not weak, nor are you a coward. You are one of the strongest people I know.

Finally, some blog comments. I was getting worried.

Ditto Cheryl's comments 110%


Veralidaine said...

I don't want you to leave us, but I understand you would want a world of light and calm over a world of pain and unpredictability, where even your memory can't stay planted in your skull where it belongs without being ripped up by a seizure.

These ARE your thoughts, this world IS being unconscionably cruel to you in attacking your memory and brain and athlete's body, three things that defined you for so long, but for as long as you're willing to stay in this place of suffering, you know how much significance and meaning you can offer-- like the post about biology and disability.

It's selfish of me to ask you to stay longer than you want to because you give us such a gift in your writing, but I'm doing it anyway-- stay with us as long as you can. But when you can't any longer, that place of light will be there, whatever it is, and we will be there to remind you that you saw it once before and it's okay to go there again, if by then you've forgotten.

elizabeth said...

I echo everyone else when I say you are certainly no coward. Don't apologize for your feelings. They are valid. You will have bad days, bad thoughts and we will be right here to listen to them and not judge. We are your friends. We love and respect you very much. We will also be here when you have good days and good thoughts - and we will hope you have many.

Elizabeth McClung said...

Well, logic over emotion agrees that pain management would be a good step - as in, manage my pain and then find out if I am still having torture fantasies, and being whiney and grumpy.

So simple but then pain is like heat stroke, you THINK you are thinking clearing, but you aren't. Still very attracted to the skewer idea. Having an incredibly bizaare day as my left arm is purple and quivering, yesterday my right side was quivering. I am ON oxygen, what the hey is happening?

cheryl g said...

What's happening is it is around 22 outside and probably closer to 24 in your building and you are in a lot of pain. That all adds up to you being non-compensating so oxy conversion is even harder for your body.

I am guessing the AC units are all busily working to try and keep your place around 19.

Drink LOTS and stay as cool as you can.

oh yeah, and no messing about with skewers...

Carapace said...

I don't think there's anything Wrong about your thoughts, though they may not be helpful. Everyone feels like tossing in the towel sometimes,usually for a lot less than you've been through. I can have my mood shot by missing a meal, f'goshsakes. I know it's useless to say "go easy on yourself" but really, you don't have to be a magical superninja all the time. It's ok to crack now and then.

But don't do the cutting. You know it won't help in the long run, and from what you've said about the way your lack of bleeding effects it, it may not help in the short run. Save your energy for more fun stuff.

As for that peaceful/light place...I know the whole "light before death" has been pretty conclusively linked to a certain part of the brain(especially triggered by oxygen deprivation!). I know I've spent some disturbingly content days in a senseless fog. Maybe it's just the brain giving you a little fun for all the trouble it's putting you through? I'm not sure if you consider that something to look forward to,exactly, but given the choice between the brain ants and being passed out in heaven's lobby, I know which one I go for.

Also, that's a perfect metaphor for what pain does to your reason.I've also heard it called being drunk with pain; you think you're coping well, but you're not, and really stupid ideas seem awesome. Get some treatment. It helps with sleep. That helps with the seizures. And then you can start making some rational decisions about exactly who deserves to be smacked for all this (hint: they have a medical practice).

Donimo said...

Oh, you. Being afraid is not the same as being a coward. Of course you have fear and despair and that isn't about being a weak person; that is about being a suffering person. I'm sure that all people who have immense physical pain have times of despair. I know I do. It shadows me often, in fact. It's really hard when you don't have good pain control, when you have grief and loss and when you have so little control. Your feeling that you didn't want to return from that brief place of peace that you experienced makes sense to me. I don't think you're selfish or cowardly to feel like you want to leave and stop your suffering. I do hope that you can get some medical help that might ease your suffering so that day-to-day things are a bit easier and you'll be faced less often with being overwhelmed.

The piece you wrote yesterday was really amazing and important (and I'm so happy you realize that). I don't know if you have any energy to pitch things, but I will make sure I keep getting the word out about your blog.

SharonMV said...

Elizabeth, i just know from my own experience, that having adequate pain relief (I'm not even saying good relief and by no means abatement of pain - that never happens to me) makes a big difference. When I started reading & interacting on message boards for Lupus and CVID, I realized that many of the people who had fewer and often less severe problems than me were getting much better pain medication. So after talking to my doc, we went up a level. And there was a big difference - even Dennis noticed right away. That was last summer I think. Then in Feb after Achilles tendon rupture, I had a really bad flare & we had to add another pain med. Tearing an Achilles tendon, yeah - ouch, but I wasn't screaming & had to walk around on it for a week before I could see the orthopedist. But having all your joints feeling like hot pokers were being jabbed in them & twisted around , that's pain (my own little torture imagery for you. Now, I'm struggling again with some new pain issues, but getting a handle on it again.
You are still Beth, so I'm sure you're still have some bloody & dark gothlike fantasies. But i hope, not so much based on reality. Maybe now that the GP is going to hand you off to a pain doc, maybe you could convince him to help you out with something that works better until the day of your pain appointment. I know you don't want to spend every day calling him up again & again or camp out at his office. I don't know what, if anything will get him to help you, but that is his job and being a doctor, one likes to think that he has at least a modicum of compassion.

Hope you are not wandering the dark forest tonight. But if you are, tell us about at and we will listen.


yanub said...

Elizabeth, one thing I believe very strongly is that there is no heirarchy of pain or tragedy. You do not have to perform some sort of metaphysical triage to justify your right to depression or sorrow or tears. Woe is woe, and knowing someone else may have more trouble doesn't make your trouble any lighter. It's the same with joy. My happiness at finding that my housemate washed the dishes before I got home isn't dampened because somewhere else, someone maybe getting married or hitting a home run or whatever might constitute joy for someone. You have an absolute right to feel what you feel. Perspective is a separate issue, and can't be gained as long as you are depressed.

As for dark thoughts during hard physical times--I once was having such terrible allergies that the only way I could have been more miserable would have been to have anaphylaxis, but even that would have had the mercy of being short instead of days of every part of my body inflamed. And during that time, I heard on the news of someone being murdered, and I started crying because I wasn't the one who had been murdered and it seemed so unfair that I was alive and wished I was dead and someone else was dead who had probably wanted to live.

yanub said...

Oh, yeah, and I got postcard #3! Yes! It has everything, even a very special EDS skeleton, doing a happy dance even though all its ligaments have long since turned into dust! And there is also a pencil-wielding Hello! Kitty and a flower stamp and a cat-girl stamp (probably someone in particular but I am not geek enough to know) and an Audrey Hepburn stamp and the front is a yaoi-ish sort of design, heavy on the unrequitted aspect.

Elizabeth McClung said...

Um, I will come back and reply - I replied to everyone on the previous post which I felt was more open for commentors. I appreciate everyone's support and the common sense stuff which I will try to put into practice, as well as the "allow yourself to be human" stuff.

The story from Yanub about crying that someone else was murdered and wishing they could live when I am so tired or in pain and want to die - been there - understand that - it helped me a lot hearing that story.

Due to recent developements, I am not going to have to PRETEND to be in PERFECT mental health to avoid being sectioned against my will - while the loss of control AND the pain still going on AND the whole threats hanging over me makes escaping into some alternate reality all the more appealing. In one day my life hit a wall and went splat (see today's post) - turns out being actually sick and dying isn't the worst that can happen to you - having medico's fighting over your BODY TOO is the worst.

Dawn Allenbach said...


You know why you're still apologizing? Because there's a part of you that subconsciously still believes the AB party-line of the plucky, courageous, inspirational crip. Screw that! We have shit days, and trying to ignore them just makes them worse.

It's the way you feel -- period. You need not justify, you need not explain, you need not apologize. It is what it is, and it is YOU.