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.