Dangerously organic!


My brain. My poor brain. Why is it suffering so? What’s been going on inside of it now that they have opened it up and done something to it to keep it working? Damn, how am I supposed to keep going when they do all these weird things to it? It’s keeping me alive; but what’s the point? I have to go anyway, but they felt they had to do what they were trained to do; cutting into it and then cutting again into it. I know I’m fading, fading away, deeper and deeper into some other place. I can feel my total being changing and becoming some thing or someone else. Not what I used to be, or who I used to be. My choice; what was the option? Let it just go and rot or who knows what, but who knows what anyway? They didn’t know what they were doing anyway.
Practicing ⎯ it was all just practice. When are they going to be professionals and really know what they are doing; something that is lasting so I can be me again? They explained it all to me, but I only heard part of it and understood less, but they had my permission and my wife. I had to go along with it all for her and the kids, but it’s my brain and they went ahead and drew lines on it and opened it up and did what they had to do and then I wasn’t any better and they explained that they had to go in again and put something else inside so I could be me again. I’m not sure if I’m ever going to be me again, but what else was there?
Laying here and laying there day after day half asleep, half awake, some other place of consciousness, half here and half someplace else. I couldn’t remember how long or know day or night; all just a fuzzy blur. I wish I could see clearly, but my eyes, eyes only half open, feeling sleepy, tired, all the time, not here, not there, someplace in between, in between here and no place.
She hugs me a lot. I can feel her, but don’t know what’s going on. How long; what is there anymore? There is no time, only this laying in bed, in the hospital, or is it? She hugs and kisses me and tells me she loves me. I love her. I love the little girls; but where are they? She told me they were someplace, someplace with some one else, not with her and not with me. I remember them. I miss them. I wonder what they are doing? Am I going to see them again? Ever. Will they come to see me? Will I know them? Will they know me? I wonder if I’m ever going to be the same person again?
God, I love her so. But here I lay, like a lump, waiting for time to change so we can go back to the way it was. Will it ever be that way? I can’t even fight it, whatever it is, I don’t even know how to fight it; I don’t even know what it is, or who I am. What’s going on anyway?
I have to get a grip. But I don’t even know what to get a grip on; it’s as if everything that was, that is, is all uncertain. Am I still me, or have they done something that is making who I was into something, someone else? They were trying to help, help me, help themselves, help, help. I can’t even call for help because I’m not sure what kind of help I need. I need to be myself again. I liked the way I was, who I was, who we were, who we all were with the girls and her and everything we used to do. There were others too, a lot of us and we used to do so much together; had fun, played, took walks, laughed, ran.
It was all fun, so much fun, play and laughter. Can I still laugh? I don’t think I can laugh. I haven’t laughed. What’s there to laugh about? Look at me. Who would look at me? Do I want anyone to look at me? They will laugh at me, not me laughing anymore. My laughing muscles aren’t working; I can barely smile. What’s there to laugh about; smile about? Just a blob of protoplasm. Yeah, that’s me.
Is she really going to stay with me through all this? She has too. What will she do? She has to be with me; we were so good together. We had so much; our kids; our life. I’m still alive. I now I’m still alive. She was here. She may be here now. I can barely see anything; blurry; it’s all fuzzy, but I think I can sense her here with me. Sometimes. She’s an angel; a real live angel, with me, for me, me for her still, in this life and now. I’m not sure if I’m here or not, or if I ever was. All memories, all I have are these thoughts of what was, if anything ever was. Am I here now, or is it all dreams of something that was. Or never was? Or will be, still to come. I can’t do anything to make it better or change anything. Just laying here waiting for them to do something to make me better, or are they making me worse or just fucking with my brain. Into my brain: How can they just go into me that way and screw around with what was in me? Or, maybe what was me.
Music. I want to hear music like I used to hear music. I remember music, how we used to love and sit together and listen to music and dance and sing under the stars, by the full moon, around the fire with others, singing and dancing and yelling and chanting and praying.
Prayer. All my prayers what did it all mean? because here I am, just like a nothing, a used to be something, and now not being anymore. There was a time; I remember time, something, and what used to be, but is that all real or is it all imagination from a time I never knew, but is coming to me from some place inside of me. If all this is me. I don’t even know if I am anything anymore or ever was. Music. I feel like I am hearing some of the music we used to have together and with others. I wish I could focus on the music and hear it inside of my head again: humming singing, playing drums in the open fields with trees all around, in the cool night air, around the fire, taking our clothes off running and playing and sharing ourselves with each other. Touch, touching, being close, in each other on top of each other, around in a circle holding hands and going around and around and loving and laughing ad crying in each others arms; holding and kissing, touching and being as we were. What was all that? Was all that for real, or again, from something only coming out of my head now? Is it coming out of my head or from outside of me and now into me from some other place, from some other being or time, that is trying to get in me?
Should I be frightened with all this or just let it come and go and allow what is ever happening to me to just happen and there isn’t really any problem or am I the problem?
How long is this going to go on? Will it go on forever and ever? Nothing ever changing. I’m locked into some time warp that was created out of them going into my brain to get rid of the disease they said was there. They could have let it all go and than maybe it would have gone away. They said they could get rid of it, but instead they got rid of part of me. It was the best part; the me part, the part that I knew; was how I was, but now I’m not sure of anything, except her, my wife, yes, my wife, is with me most of the time. I can tell, she doesn’t leave me for very long, she comes back always with something for me, for us to share, with each other, with the kids.
Time will mean something with all this. Time is the factor here. I’m young, was young, must still be young; was strong, vital, able. Now I’m what? Who knows? But not me anymore, but I can be that again; she doesn’t give up on me, so how can I give up on me. The kids; I have to make it for the kids. And her. She’s doing it all of us, so I have to do it too. It’s like going crazy, wondering if all this can change and is going to be like it was. If I can be whole again? That’s the key issue here: Being whole. I don’t want to be half or part. I’ve been that, half, part, for a long time now, whatever that means, time, but have to work on becoming whole again.
The prayer thing, with friends, doing our ritual still in the woods; praying to the Gods, all of them, whoever they are; what they can be and do, whoever, forever, they are forever, and the angels, whatever they can do, I knew them, I know them; they are around, waiting and doing their help for me, for us. They’ve been there before, before I got this, so they must still be around, maybe they brought all this on so I could be tested in my belief in them. Don’t worry you guys; I’m counting on you helping me through all this. I know you’re out there waiting in the wings, funny “in the wings,” in their wings, winging it, waiting for their cue, so the can come into me, into our lives and help make us whole again. I want to feel the part of everything that I have felt in my life, knowing that I am one with the trees, with the birds, flowers, all nature. It is all me. I am one with all that is, ever was. I’ll come back. My essence. That’s it. What I’m missing: My essence. Oh, come back, my essential who I am. God, oh, dear one, I’m screaming out to thee. Hear my call.
This disease has me feeling separate from everything except her and the kids. I shouldn’t say this, but sometimes I forget her name and the kid’s names, which one is which. What do I call her? I don’t use her name. I can’t remember. Maybe she knows something big time is going on with me; that I’m on the verge of not making it.
No wait, that’s not true. She doesn’t believe that. I’ve always been into true. Truth. God is truth. Love is truth. The truth is love. I remember some of that. How I used to think. I used to think, know, that truth was the highest and now, something comes to me from deep in me telling me that the truth is that I’m getting past this. I’m on the verge of totally making it, and being who I was again. I can feel it in me, getting whole again, I won’t dwell on the negative, only focus on the positive so that is all that will happen. Enough negative has happened.
Maybe I’m like the Jesus King taking on all the suffering of others so they don’t have to suffer. Why me? What have I got that makes Him think ⎯ does he think that I can deal with all this? Who am I to take on other people’s suffering? No, this is mine. I own it for now, not forever. Not forever. That’s me: knowing this isn’t forever. It’s okay; I can do it. I’ve been doing it.
No one can go through all this without feeling crazy. It is crazy. I was just usual and all this happened. Brain cancer. That’s what they told us it was; just as they told us it could be; it was. They showed it to us on the screens; a major university teaching hospital with their big giant color monitors with my brain; the inside of my brain with this thing growing in it that didn’t belong there; it wasn’t in a good place they told me and it would kill me for sure, in time; short time, pressing on places that could slow me down, make me dizzy, slow, weak, then slower and weaker, a year, two years at the most they said if they didn’t do anything. They told us; two years it wouldn’t be much fun. It’s been longer then that now she tells me, three years, four, I’m not sure what she told me the last time she told me, but its longer and I’m still here, but they did do all this stuff to me, overdid some of it they told us too. Too much ⎯ they killed off a good part of me, but now it feels like it can still stop, will stop, and I can be me again.
Yeah, I’ll remember and become me like I used to be with her and the kids. The little girls are so patient with me, they seem to know I’m not me, but only of part of me is there. She’ll help make them strong, like she is, so they can deal with all this. It isn’t easy for them; poor little girls; two and four or maybe three and five, or, or, I forget their ages, just little bitty things, but they know love, they are love, they came from love and will be love. I know nothing can go wrong when everything is so right. When love is there then things have to work out for the best: For the girls and her and for me. I haven’t been able to be a father to them, or a husband. Sometimes I look at them and don’t even see them. I look past them or through them as if they aren’t there. They must think their daddy being a strange one, but maybe they just know; she tells them that I’m getting better, that time doesn’t stand still, keeps on moving, going in a right direction and that in another time things will be different for daddy and he will play with you and take you to the park and make you happy and they tell her they are happy and that they pray for daddy every night when they go to bed and when they wake up that daddy will be whole again. We used to teach them to pray for all the ones they loved and that nothing bad can happen to them even if we think something bad happened or it looks like something bad, it can really be something good because sometimes what’s bad is really the beginning of something good. Like this, which looks so bad from how I see it, but it’s happening to me, and even I lost the positive, I know that I know something that I sometimes can’t remember, but it is in me, deep in me, in places that even the cancer can’t touch. It can’t touch the place of love because love is stronger than whatever it is that invaded my brain and that’s another thing: How did it get in there in the first place? It chose me as a host to live in and try and grow so it could take me over. That’s what it wanted to do; take me over and live in me, so it could act through me, but we are beating it, I know we are beating the shit out of it and when it’s all gone, I, we, all of us, the kids, and her and the docs will celebrate. I don’t think we could have done it without them. I didn’t think much of any of them before all this happened, but they did it, I know that they beat the devil-like thing that was taking me over. Jesus, Lord Krishna, Buddha, Mohammad and all the rest of those really high beings, they must have been here with their Love for me to kick the shit out of that sneaky viper that invaded my body, my brain, of all places to attack me when there are so many parts of me and how so many get attacked in different parts of their bodies, but me, it went right for the jugular, that part of me that is the most important part of me, trying to kill me is what this was all about, but we’ve beat them, I know we’ve beat them, all of us working together, beat them; those who wanted me, for who knows what reason, but it’s not now, nor later, because we have the good and love on our side, the right, the time is ours and now it all will change around I will be different; will be the one that was for my girls and her. They will know me as they knew me and I will know myself as I have known me and my brain, that special part of me that allows me all this will be whole and all of me will be whole and with her and our two little ones our wholeness will be forever. My eyes will see, my brain be clear and we will again dance by the light of the moon, drums will boom, the fire high, with all the others, coming out praising the goodness that prevailed and brought me into and with and forever more in this place and what ever other place there is to be in and on and into. I know this.
I knew this was going to end with me being in victory over those forces that are beyond our vision, but that attack us within and from without. They creep into us when we are unguarded, unprotected, unwary and begin to eat away at our organs until we are nothing and then they, like crazy beings, die as their host dies, but not this time, because this host has been sustained whilst they have been vanquished by, medicine, technology and the cutting knife.
It was more though, I know this, much more, because I was a goner, way gone, in a fog, dazed, crazed, blinded, blood, pus, vomit, all the vileness coming out of me, I can remember it all when it was the worst, tubes coming in, tubes coming out, a protoplasmic lump. Not me. It was more than the medical and the cutting, much more, they gave up on me, I know it, I could hear them talking sometimes when telling her about me that they didn’t know what more to do. They really didn’t. Try this; try that. See if it works. We’re sorry ma’am, we don’t know anymore. They really didn’t know, but she did, the ones close to us knew something they didn’t know. The dancing around the fire, the drums, the chanting the prayers, all their hands on me, oh, their glorious hands and feet, lips, arms, touching healing, their love and kindness and everything good that is in them, they were putting in me so we could get past all this. Was all that nothing in this victory over the creeping growing dark forces that was unknown and unseen in our eyes, but to the microscopic vision of their technology we learned something, she saw where it was and were able to work with our loved ones and the evolved One and the many Beloved ones whoever, wherever they are, so in our dance and in our healings we were able to have a picture of what we were up against and where and how we were able to place our hands and hearts and send our energies inside of me to the places the docs thought only they had the power to overcome these insidious ones. But they didn’t know all and we didn’t know all either, but something miraculous happened and now as the light begins to shine into my being from higher places, from celestial spheres beyond time and space. Something is transforming in me that will allow that total Love that came to me and allowed me to be whole again, so I can help others, for Our Mother who came through me and to me in our dance.
And I will be back for my Kriss, Sarah, Sadie.

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Comment by Michael Levin on May 24, 2009 at 11:54am
"Criss Crossed Circuits" (CCC) hit a note with me. I had just watched "Stroke of Insight", by neurologist Jill Bolte Taylor. Writing like this affects me by blossoming my empathy like a flower. It helps us understand the separate reality people struggling with health issues face. Now, when I see a person grappling with something inside himself, I say "Can I imagine what is going on in this person's head?" The catchy tune of Mipham's "What About Me" echoes in my mind. The person asking for help at the door leaps up to open it for the shopper who passed him by before without helping him. What's in each person's mind? As Rivka Galchen's characters in "Atmospheric Disturbances: A Novel" wonder, what is the consensus view of reality?

Thanks, Shmal - I wish everyone could see the documentary Michelle Friedline et al made about your work called "A Shmal World". Sequel?


Michael Levin created this Ning Network.

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