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.
1 day ago