Sunday, March 14, 2010

My bit of flesh, thankfulness, breathing, kindness and Linda

Last night, or rather the early morn, I came in and told Linda goodbye. I thought I was ‘at peace’, I had finished most of the work, postcards, gifts, and other items to send out. I had damaged my cheek so badly blood filled and came out of my mouth because I can’t feel the inside of my cheek when I chew, so I just kept biting down. I found out that what I though were a couple stray hairs (you know those annoying ones you have to pull!), but when I looked in the mirrors strips of flesh were gone. All because I did not know the strength I was pulling nor could feel my fingers or my face. So I had literally pulled strips of flesh off of my face and saw a 'me' with raw flesh and blood running down my cheek, and I had felt nothing. I thought I was ‘improving my image’.

Linda said that when I came in to sleep, she had never seen me beat so far down. So far down she didn't know how I could come back. I don’t know if there is a part of me that hasn’t had an accident in the last 48 hours (one knee and bone into my desk at high speed due to an error on Indy, one long fall which ripped my left shoulder, ribs on front and back, ripping under the ribs on the right, my feet have sections with no flesh on them, and my arm up to my elbow was purple like dark grapes while my fingernails were an almost florescent blue). But I got what needed to be done finished. And after it was done, I sat and thought about Linda. Linda goes on even more than I do in some ways. In all times, through all of her problems, she still helps and protects me, supports me, cradles me. In pain so bad, I cried for over an hour, she was there. Though the good and the horrid, to the simply unrepeatable vile experiences that beggars belief a human could live though it, she is there. I realized that the losses I feel are because I was so blessed with so much to lose.

I do believe in a person’s right to die under certain circumstances, but in this case, I just felt the disease and the worries all lift away. Like someone whispering, "Don't worry, you can sleep now", so I lay down. Linda had come back from the friend with cancer talking about the nightmares she had. I remembered those. during all the testing, and some treatments, there were nightmares every night, for more than a year. I asked Linda, “Do you want me to tell her the truth, that once she has lived through enough, the nightmares run out, because whatever you can imagine, they have either done to you, or you have experienced the pain of it?” She didn’t think so.

I had not thought I could lose any more identity but somehow peeling off the flesh from my own face did it. I struggle every day to feel human: do I have a gender or am I just a series of crashing bio systems, some yet to fail, and others in or finishing failing? Human or not, animal, or something ELSE, I feel thankful: thankful to every person who has helped me, who has emailed or sent a card, gift, letter or a package. I have tried to respond to each one, as the disease allows. It is always 'As the disease allows' and this week, it doesn't allow much! I can’t do ‘this’ alone – ‘this’ is the 60%+ of my life that I spend, as noted by the psychologist, just to stay alive another day. I can’t get depressed, I can’t get self destructive, I live in a disassociated state because I have to. And if you wonder if you are going crazy because you can’t stop thinking about your illness and you seem to take in life changing news like it is nothing and feel dissociated and you feel on the edge of madness... It is because you are! Because that is the only way to survive!

I asked a friend who was going through this crisis of possible terminal disease and worried about the feelings of coldness/dead acceptance of that which should provoke more emotion, that perhaps she was a sociopath. I told her that we were both A-type personalities (big laugh) and that we did what we needed to survive. I asked her if she was told her disease was in her leg and spreading what would tell the doctor. She said, “Cut off the leg.” I asked how soon. She said, “Today.” – That’s not a sociopath, that is a survivor. She will survive.

Those like us don’t have the luxury of PTSD therapy, or even full PTSD, it is just that we leak a bit of the madness around the edges of our lives. Because we can never stop, never get a break from the trauma and stress, or it will wash over us and we won't survive.

How to avoid the nightmares? I don’t know, I just know that having them means that the person is preparing themselves to do what MUST BE DONE to survive.

But for me, I had come to the end. And so I said goodbye and I lay down and I fell asleep and I stopped breathing.

And started, and stopped, and started. I did not know this until I woke up shortly after and my stomach was full of air, and I wasn’t sure to hope that I had rested enough for the autonomic system for the lungs to work, or to not. But I woke up later. And I am still here, and still planning on going boxing on Monday, not because I am not in pain but because it needs to be done, for both physical and emotional reasons. But pain, oh the pain I am in, I am a virtual opium den of painkillers all by myself! When, like yesterday and the day before, the pain swells and it is not minutes but hours until I can take another pill, there is eternity in each second. It is so bad that I just lie there and try to think of something, anything, to have a stone face while my body sobs. And sometimes, I go insane, and all sanity leaves because the pain has driven it out, covering me with a membrane of unending acid, acid that works down to the bones and places unthought of. So I hear the screams and sobs until the voice becomes hoarse. I don't look at the clock, but the the ceiling, trying to pretend this body isn’t mine. Because if I do accept that this is me, that this is my life, that the madness is always there as long as the pain is there, I won’t be able to push myself, or go on.

But I do, fragile, broken, bleeding, what beauty is left to me now? The disease steals all the faces, all the masks, and then it eats your skin, your pride, until only those who can see your heart do not gasp when they are around you. Linda knew I had hit bottom. She went and got the mail/post.

When I was in 7th grade, I was so bored because the classes were so dull, that if I could save a minute here or there, every day I could have an extra hour or two. I imagined a company, “Time in a bottle” where I could sell all the extra time of teachers repeating themselves or covering stuff they told us to read which I did read, only to have them cover it again. Time in a bottle.

Linda came back with gifts of ‘time in a bottle’ for me, most I bought myself, but some were gifts, books, manga, letters, anything that allowed me to not be here. Because not being HERE is the only real honest luxury I get. When I can only remember a few days, and those are filled with pain, suffering and injury…….I stopped praying for waking up without pain and starting praying for sleeping with pain no more.

But I woke up. And so, on to Sakura-con, I jammed a smile on my face and it turned out that all of my expressions include a raspberry. So BLEEEEEESH! to you too! I guess 'I' am still in here somewhere.

Reality is, the difficulty of transfers, the pain, it just means bed days and little access to computer. Working on small improvements. So I still have DVD’s, or manga, or books, or the breathing game when things are bad. I breath and trying to get the next breath, and the next one. I never thought that I would have to try so hard to manually control my breathing because I have to. Why won't my body breath for me? It is because I ate food. And in eating I don’t have enough energy to digest and breathe. So I let the body digest in hopes it will make more stronger, measured in small things, like being able to sit up by myself and not topple over. So I need to breathe for my body. That just is what it is.

I’ll get better. And time and days drift by but now I realize that unless I climb up and grab hold of something, work toward something ELSE, the only thing I am drifting towards is my own death. And it will come when it comes. I am too weak and unstable to work, I am too ill to do many meetings, I have very limited mobility, and yet, I go on. Grieving loss is for those who have that luxury. Do I like that I have missing skin and bare membrane on my face, my feet, my mouth, and a few other areas? No. But whether I be a monster, a mutant, a freak, a human trainwreck, it just doesn’t matter – I go on. Loss is just part of what blows away.
I have great friends. I have more people to love than I can show the love I hold for them to, than I can give the support to them I want to. Love is an action and I want to be well enough to act, to be well enough to be a living prayer of support rather than a comment that 'I am thinking of them.' “If they would spend less time praying for good things to happen to me, and actually do one of them, something would happen.” – a quote from a friend who is under the shadow. She cannot cook dinner, nor can Linda (as she is often too busy supporting me). She has what help and support I can pass on, those bits from me and others to sustain her and give her moments away from the ‘here’ – even some hours of forgetting that 'this is it.' We as humans are not in control of very much, at the end of it, we believe we are, and we assume so much, like our body, which has tens of thousands of mechanisms, will all work well simply because.....those around us do (except 1 in 6 don’t). We assume the future will be as the past, and that we have control over ourselves AND others. We assume the past will not haunt us. Good luck on all that.

Linda is battered too, so much that unexpected kindness shakes her, leaves her unknowing what to say or do, because she has always had to control everything or I don't survive. That’s why I get her romances, because I fight for me, so in the end, how selfish is that, compared to her, on a few hours sleep a day, fighting for ME? How do I give a rose that says all that I appreciate, leaving aside for those moments the guilt of staying alive to burden her, but to let her know I see how she does so much and why she does it. Because she loves me. On her good days, on her bad, on her days with headaches and days with disasters, she is there for me. For me.

It wasn’t supposed to be this way, it was supposed to be us together, seeing the world and enjoying it together. It was supposed to be me protecting her, but now, I am too weak to even hide the facial expression of pain or hurt. She cannot help but hurt me as she lifts me up to swallow a pain pill and yet, she has to do it. And do it while watching the pain she causes, etched into my face. She has nothing to be sorry for, and yet she blames herself. And I blame myself. Why, because we created this disease? No. I work for the happier times. Sakura-con will be a happy time. Parts of it. I think we are going to go up the space needle and ride the monorail. Why not? We have not done that in a long time and it is very accessible.

I like to watch her, when she isn’t looking, to see those fleeting moments of happiness, when she forgets about the disease and smiles. It turns out she watches me, doing the same. And some of those times we hold hands.


Dawn Allenbach said...

I'm crying right now for the two of you, for the tremendous love you have for each other, for the injustice of you both having to go through all this.

I'm so sorry I can't move up there and take care of both of you, that I can't cook or clean for you, that I can't be there to read to you when you can't see. It's so unfair that I have this overwhelming need/desire to help you both and am unable to do so because of my own disease.

Baba Yaga said...

Ah, Beth. The peeled face makes me cringe for you, amid the sorrow for so much pain and batterment. (I remember once, in my insanity, having tried to Piccaso - as a friend put it - my face, rather frantically asserting, "but this is what I should look like". Why it seems apropos to mention it, I'm not sure.)

You ask a question, and answer it: there's much beauty in your heart. Monster, mutant, freak, human trainwreck - if you're those things, you bring beauty to them, and create beauty from them. (Not one but is a descriptor almost solely to create distance from what we fear; and we all fear pain and disintegration.)

I don't quite understand about pain to the point of insanity, though I certainly believe it; I do well understand that not being Here may be the only, and greatest imaginable, luxury.

If I had time in a bottle, it'd be time scented with cut grass and laughter, for you and Linda to share. Peaceful time.

Dagny said...

Those last few lines are beautiful...bitter sweet but beautiful.

I'm glad you have each other.


yanub said...

Ah, you and Linda. Carapace and I were talking about you two today, and we both agreed that y'all make a very attractive couple. Yes, I know, to be mild about it, you aren't at the peak of your physical condition, but that isn't it. I think it is more that, in the pictures of you two together, there is a look you share, that radiates from you both. It's a kind of beauty that I expect comes only from walking together through the fire that burns away everything but the love.

And you answered something that I was going to ask you, but I won't tell you what. You'll just have to wait and see.

cheryl g said...

In your writing your pain comes through but even stronger is the feeling of love you and Linda have for each other. You are both such amazing, beautiful people inside and out that how could I not help you in any way possible.

Elizabeth McClung said...

I wanted to write what I was feeling, what it is like to see yourself and your partner and others, after your self identity is broken once more.

Dawn: I feel the same for you, for those dark times, when things go wrong, when workers aren't there, that I am stuck here, and not there where I could be of use. I suppose the pain is from the love.

Baba Yaga: Of course, I know so much from depression that the thing I desired most was to be 'not here' - I dreamed about hospitals thinking that it would be a place where I could leave the chains of depression at the door, where kindness and caring was. Wow, did I have a TV view of hospitals or what? Now I try to avoid them in order to stay alive!

For me, as a cutter, I never cut my face, it was embedded into me, I guess the whole, 'when they want to hurt girls they cut the face' kind of sacred aspect of the face. So your darkness went somewhere I did not, though I understand the urges (Piccaso indeed, apt description of a collection of skewed viewpoints, of self, of the brain, of the body). So here I am now peeling myself like a potato for mashing. Sigh.

Linda said that all my adjectives were one side, that there was angel, super-human, pheonix, and the positive ones. I told her, people don't call me that - Anon's call me a freak, monster I have been all my life, geneticist and neurologist who was obsessed with incest see me as a mutant.

You are my friend and so I hope you NEVER know about the pain to insanity - but I know that many people with chronic conditions have that, or parts of that, so I wanted to describe my experience, the attempts of disassociation.

I like the idea of opening up a bottle of time, along with wine, 'let's take all the time we need' - to stretch the good times.

Dagny: I am thankful for Linda, though I don't think I say it enough. I am thankful for those who read, and those who reach out in comments - though I don't think I say that enough either. To those who write a postcard, or let me send them a postcard. Linda is my every day, yes. But that still leaves an apartment alone. I am thankful I have you, also.

Yanub: I have been toiling to figure out what to send you. And now you tease me with some question I answered? Is it heroin - please don't send that in the post as it is a federal felony! I really could use one of those magic patches which make pain go away - I will try to find a doctor to give one.

Thank you, Linda and I have lived in many continents, and traveled in harsh conditions, depended on each other for our lives and know that 'I need you' is the strongest words. Though sometimes I made stupid action, I know she loves me, however much I hurt her, or however much she might accidentally hurt me, she knows I love her, and always will. The rest we determine to talk out before bed - we are one. I try hard to share those moments I don't feel so awful, to be with her.

Cheryl: you are an amazing and beautiful person, and I do what I can to be there for you because I love you. And your outgoing kindness, your open heart to love and help which I see in the actions you do to help me only reinforce what I know about you. You are my sister, and I love you. Just to see you smile, to make your bad times a little better I would do all that I could. Because I love you. Linda and I are one relationship. But so are you and I (though no sex, sorry). Thank you for being in my life.

Diane J Standiford said...

It is always hard to comment here, I seem to say the same thing over and over, at least in my head. I don't share your body condition but I share many of your feelings. What food does that do? None. I sure agree that all the prayers sould help by DOING something for us. Some of my blog readers have done just that. No way to thank them. Few people in your shoes could write a blog.

Raccoon said...

Ouch. You aren't supposed to do that. Your face is supposed to stay on your face, honest!

I like the picture of the raspberry girl.

There's been times when I thought I would be going out of my mind. Luckily, it's never been from pain.

Keep looking forward to Sakura-Con, and the Eisner awards.

wendryn said...

I am amazed that you can be so hurt and still manage to love, to care, to think about other people. You and Linda have a deep, wonderful relationship.

I wish I were closer, that I could help more.

The image of peeling off your face made me wince and want to hold you both, to try to help. I'm sorry it is so bad some days.


Lene Andersen said...

that was beautiful and sad and a perfect love letter and it made me cry. Because the two of you are what people dream of when they dream of love. And because that the two of you have to go through this is so bloody unfair.

I'm glad you had a moment of being at peace - your condition batters you so much and peace is so hard to come by than a moment like that is a gift. Still, I'm glad you're still here because I'm a selfish cow and I will miss you very much when you go.

I keep wanting to tell you that you're still human, because you're still you, but I think I finally realized that this isn't helpful. So instead I'll try to understand what it's like for you to fight so hard to be yourself with everything your body does that is so far from normal. You describe it so well that I think I understand, but I'm not sure anyone who isn't living through it can.

e said...

Dear Beth,

It pains me to read this, but I rest on every word, hoping that you can have a pain-free, seizure-free day to enjoy what you will...

Please don't peel your face; I too cringed at that, but you are beautiful no matter what. Please give Linda a hug from me and have her give you one on my behalf.

I wish I could send you more than cards or letters...


Neil said...

I'm so glad you two have each other; you still sound like a perfect couple.

You may be a human train wreck, dear, but I still put heavy emphasis on the "human" part of that description.

Thank you for being honest about what life is like for you.

Love and zen hugs to both of you,

FridaWrites said...

I know what you mean about the nightmares stopping--I really do. You're right that it takes more courage to keep going--our inner reserves should not be underestimated. Inner strength, like creativity, is an infinite wellspring, and the more called one is to draw on it, the more you find, every bucket drawn is full. While we may fear it won't be full, it is, it is, it is.

Elizabeth McClung said...

Diane: I am heartened by your comments as a writer, since I hardly expect anyone to experience what I go through, but hope to focus on aspects of ruminating or experience that might have larger echos - or be experienced by others. Saddened too that you have experienced this.

Frida: A mixed reply, I feel melencholic and uplifted reading it - to know the end of nightmares is the end of a road which is like the robbing of innocence.

e: It is not like I peel off my face on purpose, it just is that my skin is peeling itself again - so, more sweating more often - had to cancel monday boxing due to health but Thursday here I come.

Pain free - I just got told yesterday at the Queen Alexandra that I needed to move as much as possible - there is a little graph where movement and pain go up up up. Ahhh

(letter not here yet, still looking, is postcard there yet?)

Lene: Being able to understand is still a great benefit since as I found out yesterday, there is so much assumption, even from professionals who should know better than assume, who desperately try to find pigeon holes to put me, and think that because I had a seizure early on, because I did not at that point know the signs of overheating, that THEN was bad and now is same or better, until after a while, they run out of possible pigeon holes.

Wendryn: I am frustrated to be trapped in this hard shell of pain, frustrated more that I must work so hard to survive when that labour could be spend DOING, going ahead and advancing. But as Milton says, "There are those who serve who only sit and wait"

Raccoon: I concur, face on face instead of in trash is best.

I like her too

From what you have endured, your even temper, your calm and wry humor is goal post for me, to know that ill treatment, social system breakdown and those situations of days without end, with an altered body do NOT burn out the soul. It sustains me, that the "I" can still survive.