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It's One of Those Days… Thursday, March 7, 10 & 13, 2003 (These three sections are not exactly in chronological order;
as a matter of fact
I'm having one of those days when you wake up and you feel so much different than the day before or for the rest of the week... maybe a little sick. Something's off… something's different. Well, I have those days every once in a while where I wake up - and today is one of them - and I just feel weaker, substantially weaker - I don't know, like a horse has kicked me, kicked the wind out of me, (and I haven't been drinking, I don't have a hangover) but, you know, the weakness, the illness, that takes away my strength and creates this weakness in me usually is not so detectable, the differences are not that detectable from one day to the next, it is more like one week or every couple of weeks, or every three weeks. Today is one of those days where it feels like, I don't know, it's like something happened during the night, the spirits, the angels, the body, something, has been working on me, working really hard, and as a result, I'm really weak. It's hard for me to talk, it's hard for me to do anything, move my legs -have my legs moved, and it could have a lot to do with the emotionally exhausting day we had yesterday, Ginny and me -in going to the doctors', talking for two hours with a couple of doctors, and the social worker was there - it has a lot to do with that too, I guess.
Oh boy, what a difficult thing this is right now, to get up in the middle of the night and I cannot pee. I’m afraid I’m going to have to have a catheter -an interior catheter. -Interruption- Ok so Ginny was in the room checking in on me for a minute… -Oh boy. This disease is tearing me apart and then I think again of the woman called Evy in Steven Levine’s book, about how she gave up, about how she… --interruption again— Anyway I think of Evy in that book, and how she gave up. She talked about how
she couldn’t move in bed, she would turn herself somehow and land on her arms
and not be able to move herself off her arms. But that’s not what’s the worst; what’s the worst is thinking that she had given up and decided on assisted suicide. She’d decided to kill herself and had such a difficult time with it. I mean literally, she had such a hard time physically doing it. She tried swallowing pills without help and could not do it. Here she was trying to relieve herself from all the pain and suffering that she went through every day, and it turned out that trying to kill herself became even more difficult, more painful and filled with suffering. I don’t want to do that. The other day I described it as a fog. I feel as if I am in a dense fog, like I can’t find my way out, like I get lost in the fog. My body is the fog. The more that the disease makes me weaker, the denser is
the fog -or the more I identify with my body as the fog…this blanket of
heaviness that someone does for me or basically except for my thoughts and the working of my mind and being able to communicate. I can still eat, although sometimes eating is really difficult and too much
effort. Now it’s Monday night, 11:10 PM (3/10/03)And I’m hooked up to my breathing machine. I’ve got this nose mask on my face, it’s like a helmet. The breathing machine is over my chest on a table so I can turn it on and off myself as long as I can still push the button. Which I can still do now. I turned it off now of course -right now- so I can talk. Last night Ginny and I had a wonderful talk and we’ve been having more of them recently. But last night really started the discussion about both of our fears of death, of dying. And tonight Ginny described it as a dying of its own in a certain way, as we go through the feelings and share them together that that’s a way in itself of dying, and then when a body -a person- dies there’s not so much to go through. So much of what you go through in dying is fear and letting go. And if you can let go of the fear, then the actual dying is easier; it’s more of a "passing on" as they say. I’ve been reading the book called "Johnny Got His Gun"
by Dalton Trumbo, which is a real challenge for me right now. But…I wanted the
challenge. I read it when I was 16, in high school (Walden III, in Racine,
Wisconsin) as part of my class that read a book a week, a novel a week. Probably
one of the best classes I ever took in high school. We read a lot of good books.
This one is an antiwar book written in 1939 from a soldier’s experiences after
the First World War, and it’s about this guy, Joe, who gets blown up -both
arms, both legs, and his face. And the story takes you through, slowly, as he
realizes what has happened to him coming out of the trenches and coming into the
hospital, part by part First he realizes that he’s deaf. He can’t hear anything but the ringing in his ears or in his head. "Will somebody stop the phone from ringing?" Then he realizes that he has this tingling in his arm and that they’re
cutting off his arm. Later he realizes that he has no arms, both of them are
gone. I wanted to read this book because there is always a case that’s worse than But that’s not really why I wanted to read it. I want to go through the fears of death before I die. I want to go through them and choose to live. I CHOOSE TO LIVE. I WANT TO LIVE FULLY THROUGH THIS JOURNEY.
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