Thursday, March 12, 2009

Fear: for caregiver, for disabled. And dying.

Spring is supposed to be here, and I think it is trying, though snow lies in the shadows and corners. In this picture Linda says the woman is celebrating the ladybug on the fence. Linda has view of life sometimes. I think, like me, the woman is just glad to be able to get out, to know that growth is here. The earth turns, the earth rotates around the sun and in this hemisphere as we hurdle a bit closer to the sun it brings us to the annual time of growth. Planets can be pretty nice things sometimes.

Last year, I was getting ready for Japan; what a difference a year makes, eh? I have a book on the anime girls of different prefectures of Japan and I definitely want to find this one. Any place where you can get a sign saying, “Beware, monkeys may steal your clothes” at an onsen is an onsen worth visiting. The paper we were handed by the tourist association and JR which told us at Miyajima that if deer ate our passport or train tickets, they were not responsible. That seemed surreal and a wonderful joke. Then we ran into the German couple whose map HAD been eaten right off the ferry and had been lost ever since.

At Nara, where we not only saw a World Heritage Site (oldest largest wooden building in the world) and were chased by monks (to throw us out after Linda went Camera Whore), I learned the difference between feeding squirrels and deer. That when two deer who are fighting over a harem stop because they believe this object over here has food, you GIVE them the food, and fast. So that way they can go back to smashing their horns against each other. The only serene look I had feeding the deer was when my food was goneand I sat with the bucks that lost and watched the super-aggressive ones mug other people.

Okay, enough procrastinating, right? That was my rather lame intro to fear.

I learned fear the good old fashioned way, helpless, terrified, pain, the usual. But as Linda is finding out, fear can come to anyone. I will show you that in a bit.

See, we grow up and we think that we can't be reduced anymore to the states of fear: the helplessness, the dependence, the lack of choices, the knowledge that being alive is fiscally the worst thing we can be to those we love. We are ADULTS, we aren't little children anymore. How naive. We think we know where our sunny road goes, we have it planned out. The truth is, we don't know if there is a cliff beyond that curve, but this is YOUR road and you have to follow it to the END....regardless.

This is why individuals have petitioned for euthanasia. While I don’t think the people who FEAR ME, or those disabled like me, the people fear those who are disabled should be allowed to petition. But whatever your stance, if you are in a position where your income is fixed, your disease/disability is variable and suddenly change, expensive change is looming, then you are looking at options, bad options. You could be put in a sort of disability/old age prison system we often call nursing homes. You could literally bankrupt your family. You could be dependant for an unlimited number of years. And the fear in your gut, what does it tell you? You have never had days you said inside you would rather be dead than hurt endlessly the ones you love? Well, I have.

That we don’t have an adequate system to give a life, and yes, a death of dignity is the fault of all of us, as we are all part of a society that embraces the diseases which have the best chance, the longest remissions. Maybe after the several thousand strong run/walk for breast cancer there is another one of 10,000 people raising awareness for ALS, or SMA I&II, or many of the hundreds of things from RSD to Gillian-Barre which just strike and change your life forever. Leave you just out of the edge of society and vulnerable...forever.

I have fear everyday. I think it is part of disease, as it is common with those who have mental degeneration. Sometimes, I am ‘having a good day’ and sometimes I am not. And when I not, I am scared, or rather, I don’t know how to hide how scared I am at things and people. I have ‘good hours’ and ‘bad hours’. This is hard because I don’t want to expose myself, I hide it from Linda and Cheryl, just like my Grandmother is still trying to hide it. I’m not in control, not even of myself, and so any change can induce panic. But before I tell all, I will show you how fear works on BOTH sides.

See, this is me, maybe the me you never fully saw, only know the me of this blog. This is the kick-ass, so what, attitude I have/had, that I am going to overcome the world and I have the brains and the drive to do it. I AM larger than life, or I was, and when I good, when I was at my best, this is how I looked; full of joy, full of adventure, and saying ‘come with me.’

And this is what our life together was, it was challenging the world, it was challenging ourselves, because we had each other. We always had each other and Linda knew that if things got bad, I would do what was needed to get it solved. There was always a way, even if it meant working an extra job, even if it meant stopping a dream for a while, it was worth it for her.

And then I became sick, and recently very, very sick. Like I should be dead sick. And she has to watch that. I don’t. I don’t know how sick I was last month, or two months ago because my brain was damaged and maybe I should have taken videos but is that what I want to leave behind, a visual record of my degeneration? I know from the ‘my GOD!’ exclamations of health workers and health professionals that I am not exactly looking rosey. So for Linda, there I am, making a joke, and she can believe, fool herself for a while that THIS is our life. That is when I start to shake, because my brain is literally on fire. And when I have finished bruising myself, I lay there. Or rather I DON’T lay there. A body lays there. A collection of meat in the shape of a body. And ONLY if that body’s brain gets oxygen AND it breathes, if it has brain activity, will that body actually become a person, a loved one. One minute passes. The amount of time to keep the body alive shrinks. You/Linda call to the person inside (are they inside?), you yell at them, you touch them, you do everything the EMT's taught you and two minutes have passed, going on to three. You start breathing for them, because you are afraid. Because in a few minutes your world splits and you HAVE to have this person back, or face being without them.....forever.

And when that happens, when you see the person you love dying. And when it happens enough time, you get angry. Why you? Why this? Why? You didn’t ask to have to endure taking care of a person who you turned to in time of trouble who doesn’t even know your name. Why? And that anger comes out and they see it, and they are not having a ‘good day’ and they are afraid, and they cry and you feel horrible. In fact, at nights you listen to them breathe, or maybe after a while you don’t because you can’t stand how they stop breathing for a while. Eventually you don’t know how many times you have revived them, or helped them in bed as their heart stopped beating correctly change position so they could breathe again. And you start, as you see the progression continue, even speed up, to stop investing yourself so emotionally in them. And the partner, the person you shared your life with, can, on the ‘good days’ feel you drifting away, your face going blank, as you are already preparing yourself for the death. How can I hold on to you, when I am too weak to hold on to life alone? Your hand slips so easy from mine…

This image is from a show called H20:footprints in the Sand, from the poem about the two sets of footprints and how when things got tough, there was only one…..because God was carrying you. And then, as images flash a voice calls, BUT WHERE WERE YOU WHEN I CALLED?

That poem is for those who are hoping for the full recovery, who don't know the minutes of watching a morphine button, or whatever your hell is (and forget that up on the cross, when Jesus call....God WASN'T there). The poem is easy, simple. Living with a disability, a degenerative illness, is anything but easy.

I can only tell my story, and my story is that when I saw the movie Superman, the original, and he rotates the earth back to save his girlfriend, I was angry. Because why didn’t you turn back the earth for me? What was wrong with me? That was probably the number one question I had. And in the end, growing up in a Christian/Old Testament style church/cult the only thing that made sense in the end was that I WAS the sacrifice. Because in every old testament story, like Abraham about to kill his only child because God said to, or Lot offering up his daughters for rape, or King David losing his kingdom and his favorite son; no one ever asks the sacrifice. Their job is just that, to be the sacrifice, the cost that pays for what others have done. That is the cost symbolized in the Azazel: born, and then chosen by God to bear the sins of the people, to die, staked out, a horrible, slow and painful death. This I could relate to: to be staked, to be tied, to be hurt, to be told that I was sin. Soon, I would learn about pain, and fear, and what can be endured.My body as sacrifice I knew. So this is how I made sense of my life. This is why I tried to get God to kill me when I was 20 or so, to show me the face of God. I only learned that I could endure pain, more pain I thought possible, but I could not die. That to go forward was always opposition, or someone to stand up for, more abuse to absorb; and I gain my Doctorate in time to get a disease that destroys the brain. This is why I have no questions, because I am doing my job. If you have anger or hatred, send it to me, email it to me, yell it to me, whisper it to me. Because that is what happens, and the fear I feel, the agony is the job that I have been created for.

You see, I waited, and waited, through days and nights, and things so bad, and weeks and months and years that are best forgotten, if they weren’t written into me. I see as much like The Penal Colony, by Kafka where they are written upon me with a pen of steel as I rotate, only I never die. I waited, and waited, but a hero never came.
Today was a day of fear, lots of different fears: fears of the future, fear of being put in a home, fear of living on the street, fear of leaving Linda hurt and alone, fear of leaving Linda with horrific debt. The shining path? Death. I don’t fear Booth Gardner telling me I am going to die, I don’t fear being told I am going to get better, or that I can be better. So what that I won’t walk? If they can keep me awake with energy 15 hours a day I WILL get at least two jobs, I will write enough books to make the bookcases bow in weight. I have the demons of myself to exorcise, the feelings of failure, the feelings I made Linda suffer, and my parents, or father to whom I am a ‘disappointment’, my grandparents, my father’s father who never acknowledged I lived. I have demons in me and I am used to their weight on my back.

What I fear is being told, that they can ‘stabilize me’, that whether they understand the damage or not, this is how I will live, for at least three years more, just like this. We have no savings, what money we have to go to Booth Gardner we got from YOU – our readers. I am on oxygen. Linda has to get up twice a night to get me pills to stop me from screaming in pain. I am a cost of at least $15-20 a day. This is what I fear, that Linda will continue to be harassed as she was because I am disabled, because I am her partner and I am unable to defend myself. That she will be abused verbally and emotionally. That she will bear the weight and responsibility of a job and a dependant that WILL NOT DIE. But also who will not get better. That is my greatest fear right now.

For the rest, well, I have to sleep twice a day; so I have nightmares twice a day. And I am degenerating mentally. I also am disassociating. I started to HELP, to create the ‘counselor Beth’ for Linda, or the ‘Brainstorming Beth’ for Linda but once you open the box, then out comes the ‘Scared child Beth.’ I don’t know if it is part of the brain degeneration or part of my sexual abuse or just part of this hell situation but it happens. I just don’t understand. I am afraid. It is hell, for me and for those around me.

That is what I think many people go through or are going through. I don’t know. The problem is that Linda and I have both been battered and abused so much that we both have ‘regression days.’Which leaves the question, “Where is the adult to check why Beth’s hands are blue?”

My frustration: that after decades I finally conquered one of my devils. No, I was not at peace. I haven’t figured that one out yet, but I did WANT to live instead of want to die. I was able to look and talk about my past without out being consumed by it. I had a future. The clouds had parted and I was free. I wanted to live. For a couple of years, even the first year of the disease, I still had that feeling. I can't remember much of this last year. But now, I want to die; to free everyone from this horrible drama.

I want Linda to be able to move on. I want my job to be over, I have been staked, I have suffered, now let me die. Let me serve this last blessing. I’m not supposed to say that. Probably because it is the truth. I went to visit my grandmother and I saw myself in a few months, if I keep living. She was nice, but she was using all her energy, all her intelligence just to keep up with what or who was there, even if she didn’t know them. Was she scared, not then, but at night, I’ll bet. I am scared at night. I used to love the night, watching the night and moon pass over the world (I didn’t have bunnies to share snacks with), but now, I fear the night, I fear it as it is when I grow tired. I grow afraid, I have to sleep (have nightmares), I have to have a tomorrow (meetings, schedules: things I don’t understand where people will not allow me dignity), most vets I know treat their patients with more love, patience and caring than medical practitioners, or care givers. I fear them.

I know that it is likely that I will be afraid for every day for the rest of my life, however that long it is. I know that Linda, for many of those days, will have a tinge of fear, unless she builds her wall strong enough, locking me out. I don’t think she WANTS to do that. But I understand if she has to.

I try to find the minutes between the fear, the moments where I am surrounded but I have forgotten, or I can keep trying to grow or move forward. I sold a DVD today, that gave me a few minutes. I haven’t stopped fighting, I also haven’t stopped the job appointed me. Yes, maybe it is easier to fear when you are in pain, or when you have been abandoned by so many, when you have pain medication bottles with no refills, no GP, no where to go. But there are times between that fear. I am not paralyzed. I managed to write about it….in the end.


JaneB said...

Ah Beth, another true and painful post. You write so well, and you are learning and growing so much these days - it seems harsh that the price of that is fear and pain but it does seem to be the way of the world.

Your post-card was waiting for me when I got back from Sweden, pretty young men embracing, and yes, it is sort of nearly trying to be Spring... I'm trying to find the green shoots in my life - you're definitely one of them!- and I hope there are some in yours!

Diane J Standiford said...

I have been preparing myself and partner for all this ever since our first "date" 30 years ago in an ER. The sunrise today was glorious. That is all we know.

Lene Andersen said...

I wrote about fear today, too. You did it much better.
If there was something I could do to make you and Linda less afraid, I would. Oh, for a moment of omnipotence...

yanub said...

Beth, I have no inkling of what course you should take with the life that is yours and won't presume to even attempt to. If I could do anything, it would be to take away the fear you have, especially the fear of letting others down.

Anonymous said...

wordless,but listening.

FridaWrites said...

I think I wrote about fear a few minutes ago too. I think some of us are going to have to be afraid together for a while.

You bring me joy all the time, every day.

I feel horrible that I can't donate to your medical fund right now and hope that we'll quickly be in a situation to give some help again. With you and with other friends I strongly want to give, far more than with an organization--you bring so much to me.

wendryn said...

I can only echo yanub - I wish I could take away or at least ease the fear.


Veralidaine said...

Ah, fear... I don't know how to take yours away. I want you to want to live, even if living is THIS life, of pain and fear and regret, because maybe even within the boundaries of this life, we can together find ways for you to feel joy, desire, anticipation, happiness, arousal, and all those good things so easy to lose track of when life is scary and painful.

I don't want you to want to take your life, because I need you as a part of my life as long as you're willing and able. Selfish? Yeah. It is, a little. But it's the truth. You mean so much to me. You are family, and you make me a better person. Even when you don't feel joy or desire yourself, you feel the desire to bring joy to others. That is amazing.

I have fear, too, and sometimes thoughts of self-harm, even though life is pretty okay-- so I understand how proud your achievement of wanting to live was for you. And how hard it must be to have that stolen from you by MSA. I wish I could give it back and take away the fear...

On the off chance it will make you feel better, I will tell you one of my fears, which I think you may be able to relate to: Every time I show any of my fiction writing to someone, I am held paralyzed and suffocating by a vision of myself walking down the street in the rain only to find that same piece of writing floating toward me in a muddy gutter. I pick it up and there is dripping, runny red ink all over it: "Who wrote this rubbish? Awful! Not worthy of burning!" Then the wet, muddy paper starts to tear and disintegrate in my hands and all that is left is red ink stains.

Yeah, very detailed, a little silly, and totally irrational, but that is my fear, and I can hardly breathe when it has me.

I'd like it if you could have just silly fears like that, not big fears like the ones in this blog. But fear, as you say, can come to anyone. It comes in many forms. But the only way to rid yourself of darkness is to turn on a light, and by sharing the truth about your fears, you've done that. It may prove only to be a little light, the dark may prove stronger, but you've at least offered light-- for yourself and the readers.

lilwatchergirl said...

I wish I knew what to say.

Thank you for the honest post.

Thinking of you.

- Naomi

Devi said...

I don't know what to say, but I'm here.

JackP said...

As with everyone else, I don't know what to say - there isn't anything to say that will make what you're going through right now any easier.

All I can say is that I am thinking of you, and of those caring for you.

But I can offer up a picture of my cats, along with the thought that if you and Linda were cats, this is what I think you'd look like, cuddled in together.

Elizabeth McClung said...

Jane B: Well, I always wanted to be an anthropologist, I just didn't want to do first hand research this way - it is a very quick way to learn, or to not, I choose to look full on. I want to give voice to all those who have long degenerative chronic diseases - the fear will always be there, like the pain, made into a collection of white noise, but any chance can bring it into high relief. For AB people, it is the AB which is their last resort. They can move rocks, they can be homeless, they can stamp papers for money, they can drive taxi, they have choices because they have a body. I don't, others don't. Many can't get out of bed; if the shift person doesn't come, they just lie there. I can't be homeless....I can't be anywhere without oxygen. I have 8 hours of battery reserves of oxygen and then I start to have organs die. I can't work, can't will to power a new life, am totally dependant, and when things go wonky, then there is fear. Sorry, but you were one of the few who talked about it.

I am glad that the post card was there - was there more? I hope your um....they didn't pick up the post for you did they while you were away? I am working each day to find a way between the pain, the fear, to find the green the blue sky. And when I do, I will post that as much as I can. Knowing your are back makes me feel more secure.

Diane: When it comes, it comes. I don't know what to say except maybe that support groups are really good.

Lene: I did pass out the rest of the hours, but it was worth it - it was MY choice, and I enjoyed it. I liked your article. You are the nice face, you don't talk about meat in a human form. I am ugly, but we make a good tag team!

Yanub: Well, I'm not going to off myself, if that is what you are worrying about - yes, I have those hours, those days, but since everyone knows there is little available for me. But it is amazing how much blood I can get out of a pair of scissors. Not enough to die though. Fear will always be there, and I guess the further I am away from the edge, the more each day IS stable the more it goes into the background. The more change, the less stability, the more it emerges, the less choice, the more it emerges.

Thank you for your sincere wish to take that away. I wish I had that too, but it would be usefull if I get better at all.

Anon: well, still writing, 6-10 hours a time. haha. when there is only time for death, laugh.

Frida: I can't know how horrible the fear is right now, how the background fear is now in the foreground but I will be there all the time I can. Heck you can all stay here if you have to (long communte!). Seriously. Do you think I would let you be houseless if I still had floor space.

But yes, now the fear of your own condition and the horrible choices about pain, and the fear of progression come to the fore - I hate that, I hate the society that lets that happen because they prefer to pretend that it doesn't exist.

Please don't worry, I was a bit frantic that I had let you down. IT is impossible for you to ever let me down. And you will come through this, you will, and it will be okay.

Wendryn: Yeah, but the less memory, the more fear, the less control the more fear. The pain I can almost stand, the fear is really what makes me cut myself, the blood offering, I 'am' the offering; not the 'meat' offering as there is no feasting but the 'sin offering' - I mitigate. I have no idea if there is anyone left who can understand me.

Veralidaine: I like your list - I noticed you added arousal to the original one of joy and anticipation - good thinking, I haven't even got to happy but bring on the arousal!

I'm not going to off myself, kill myself, I am too ornery for that - I must have been unclear, - I think about it but I am seriously going to make a post next called, "Not going to die, you first!" - I'm not going to die, but I am helpless, and that is driving me insane - I mean I COULD die - but I am not going to kill myself.

Thanks for getting the pride of finally wanting to live.

I have a lot more violent feelings about print, if that helps, where people take them and stick them to me and then set them on fire. So kind of similar I think. Yeah, when you rip open your guts to show and then you are standing helpless, it is very hard, very hard. To keep trying in such conditions shows courage. I am speaking about writing.

I don't think it is silly, nor do I think sylvia Plath or many of the other writers (strangely almost all female) who exposed themselves and found that no one it seemed could hear them before walking into the pond with pockets full of stones found it silly at all. We have chosen to write instead of to be out there at the beach or drinking or staring at the telly, we literally sacrifice parts of our life, over and over. Of course we want it to have meaning. It is anything but silly! Sorry, I am not upset at you, I just am upset at the voice in your head who tells you such things.

Lilwatchergirl: thanks for commenting. I have to leave a record, and while I can, I laugh, and sometimes, I have to try to explain what it is like down here. Thanks.

Devi: This is not what people can imagine - they would say, 'give her some peace' - but I am one of hundreds of thousands, perhaps millions. I am, in my condition, which has some of MS, Alzheimers, Parkinsons and many others, a way to say what many cannot. What is unique is that I can live by will alone, I can push myself to the point where my heart will stutter as it beats, where my whole arm turns blue (as it did this morning, always a bad start to the day), and I can GO ON. But it costs me something, I don't know what, some stripping of the self, of the societal body? I have days I am only awake nine hours and it takes at least six hours to do a blog - I hope that says what importance I place on being consistant, being here, and telling the truth, or just making a laugh. People matter.

SharonMV said...

Dear Beth,
I have fear that I'll not get any better Or if I do finally start getting better,having more of a life, I'll find out that there is something more wrong with me, yet another difficult to treat disease. Occasionally I get the bigger fear - that I am dying. When I feel a bad infection seep into my lungs and I know there are very few antibiotics in my arsenal as I'm allergic to so many of them. Or sometimes, I start to think about all these diseases & what they have done to my body & I know they will shorten my life. I still think Dennis better off with me still here, even if it is a hard life sometimes. I don't want him to go through the pain his Mom is living with (his Dad died in October). But I see it's hard on him (and me) dealing with all the medical stuff and the bills.

I can't really imagine what it's like for you and Linda - the daily struggle just for life, and maybe a few good minutes together. But you have to consider what the pain of loosing you will be for those who love you. What cost will that be for Linda, for Cheryl, for me & everyone else who cares about you. Not just about what your care costs in money, strain & pain for those taking care of you. There is not only what you cost Beth, but what you give: the worth of who you are, the love you give, the love you let others give you.


Stephanie said...

I love your picture of you conquering the world. :)

(Don't know what else to say!)

Baba Yaga said...

Scapegoat, is the thing which comes to mind. Heaped with the sins of the tribe and cast out to be eaten by wild beasts, or demons.

There's a reason that word lasts. The practice carries on, unnamed but unchanged in essence, in many families and sects; who never seem to notice that the sins don't leave with the scapegoat, because you *can't actually do that.

One can't carry another's sins (theologically, perhaps Christ can - not being a theist, I'm not approaching that one), and one can only renounce one's own sins by doing differently, which is exactly what the scapegoat is intended to allow people *not* to do. One certainly can't cure violence and hatred by violence and hatred!

(I just looked that up. Azazel - I never knew the connection. I see I've just reworked the whole point of what you were saying. ! The C. of E. doesn't dwell much on the bloodthirstier bits of the Bible, that's my excuse.)

It's queer about wanting to live - I got there, too, and never cease to be amazed. The life I can live isn't, so far, the life I want to live, and it grieves me to have to give things up which I've barely begun to have - but except in dark moments, I want to live it, anyway. & that's a remarkable gift.

Giving up a piece here or a piece there, so as to be able to live the other pieces, treading round the unavailable bits, doesn't compare with having pieces taken from you one or several at a time. It's cruel.

As for finally wanting to live, developing the ability to live well - I hope you know, sometimes, how *well* you live -, and then finding its worth artificially degraded by human stupidity... I can't even *think that thought clearly, let alone grasp living with such things.

Fear - you're right, few people speak of it. It's silencing. There are no words in which to recognise it, because it eats words. So silence is left as the profoundest acknowledgement. Very hard indeed to distinguish from the cutting-off kind of silence.

Ach. I don't know.

cheryl g said...

As you get sicker and I watch the fear grow I find myself trying to be more emotionally invested. Sometimes it hurts and often it leads to frustration on my part because I have a need to "fix" everything and I know I can't.

I wish I had the power in actions or words to ease your fear and ease Linda's fear. I see you on bad days and I see the fear in your eyes and it saddens me. I see the guilt in Linda's eyes and it saddens me.

There are so many if only's that would ease the burdens on you both. If only there was enough... pain relief, good careworkers, family who could physically be there to help, money, time, etc...

It is a long list. I have been trying not to get caught up in the if only's and to keep the fears to a level I can manage. Sometimes I fail. Sometimes I go down to the water front, hike out to an isolated part of the beach and shout my frustration and anger and fear into the wind.

I can promise that I will still be here, still try to make the fears less, still do all I can.

rachelcreative said...

This blog post feels important.

Your description of the changing in roles and errosion of things that made you who you were (are?) and things that made your relationship with Linda what it was (is?). These are things we don't hear talked about much. Certainly not in the honest and open way you talk about it.

It doesn't mean that you can't make it work using what you have. Change is forced upon you, both of you and you either deal with it or throw in the towel. From what I read between the lines you're both doing the best job possible of dealing with it - both as individuals and in your relationship. For people who got battered you both excel at facing life (and death) a lot better than those who tried to teach about life through hate and violence.

As ever the post is illustrated beautifully. I so appreciate the effort you took writing and illustrating this.

I had a postcard from you this week and it made me grin. Pictures of me about to pounce on a camera and I think one of you chatting with a squirrel. Wonderful! You may have thought you were just lying in bed in pain but I know you were also cheering me up and making me giggle.

Lene Andersen said...

Wouldn't call it the nice/ugly thing (because I'm not alkways nice and you're definitely not ugly). More like social worker and truth teller? Two sides of the same coin. We'd make a fantastic professional wrestling team!

I'm glad it was worth the passing out. Isn't quite as irritating when you went out dancing for it, eh? OK, so we werne't ACTUALLY dancing, but mentally, we were. ;)

FridaWrites said...

My parents and in-laws have already offered to help out if worst comes to worst like 6 months from now--so we don't have to worry about not keeping a roof over our heads.

Also, my sister's been calling with a bunch of job leads; one from a company that's averaging 15 new hires a week. It's a little bit different area, but if they allow training time, it would be a great company (they do solar power).

Raccoon said...

I don't think I could ever write as clearly, as evocatively, as you.

Fear is the elephant in the middle of the room. Even more so than Death.

Anna said...

I think I´ll just go with anonymous, wordless but listening.

Nothing to say really, In some ways I wish you and others and probably me at some time wouldn't have to go through this pain, BUT SHIT, most of us have to. And all we can do is to be there for eachother and say "I am here, is there anything I can do?)

and you are not the one who is carrying the pain, sorry for your old testament background......we all get pain, and hurt, and fear.

I am sorry. But...the manga ias beautiful.

Elizabeth McClung said...

Fear only brings silence because we let it. It seems sometimes we are more afraid to speak openly about fear than we are to have the fear. Which shows how truely fucked up our society is when those kind of values prevail.

This isn't a contest, you don't win a prize for having the most pain or the most fear. I was just trying to give voice to a process and how you cope with it from the inside.

And I was trying to explain what can be lost that is intangible. I am not sorry for my old testament as it allows me to have a language which it doesn't seem exists anymore. When Samson, blinded by hot iron and on display chained, he was a representative of God, a judge, the hand of God and he prayed, "Let me have the strength one more time" - it wasn't for saving that's for sure. I don't pray that, but one thing the bible is good for is people like Elijah running into the mountains in a cave and needing to be comforted by God. Or people asking for a miracle because the axe head they lost is the river was BORROWED and how could they afford to get a new axe to replace it! Real life.

Thank you Raccoon, your short words helped me a lot, it meant I wasn't alone, that it is there for others, and not just for me.

A. J. Luxton said...

The "Beth of this blog" I like, and care about fiercely, not because she is always strong but because she has been honest, this whole time, even when it hurts. Because she always reaches across the silence - when she's strong and also when she's weak and scared.

Baba Yaga said...

This isn't a contest, you don't win a prize for having the most pain or the most fear.

Did I do that? Maybe I did, sorry. Not intended!

Elizabeth McClung said...

Baba Yaga: No, I was responding to another commentor, I am sorry I did not make that clear and in rereading the comment I seem to inserted a word that didn't actually exist in the comment which changes the context. I thought someone had written, "You are not the only one with pain" - which is a common statement or sentiment people have, but no, I wasn't responding to you in that regards, I need to be more careful on these sensative subjects (sensative to me and others)