[Franky Scale for today remains in the 6 range, no vomiting but nausea still; and I had some real hunger and a brunch to match in the a.m. with Mr. Ted; all such good things today were no doubt transcontinental gifts of providence from Francis, after whom we name our scale, and who was born on this day those years ago. Peace. -Mr. J]
“Who Is This Mr. Jones Anyway?”
Why has no one even questioned what’s in this name? I assume it’s collective tact to explain why no one asked why a pseudonym, now defunct save for the continuation in its new or afterlife as nom de guerre. I appreciate all of your tact while it was needed. But the provenance, am I the only one who thinks it’s strange? An in any event I clearly seem to want to talk about it, so you’re stuck, unless you hit fast forward.
Mr. Jones, the obvious initial source character is from the Counting Crows song, “Mr. Jones,” in the little prophetic fantasy room built by Adam Duritz in their first album (August and Everything After), but still he’s someone who’s misunderstood there too. First, of course the song bears his name — but what I noticed when going back to the song for details is that it’s not really about him at all. It’s very much about the “me” of the singer, the speaker of the poem returns.
Second, logical correlative to the first, there is only one line about Mr. Jones in the whole song, only one that says anything about his desire, and of course I’m going to take the Lacanian route here too and assert that the desire is sign of lack and the lack constitutes a person’s identity, if you will. The one-line persona then there: “Mr. Jones wishes he was someone just a little more funky.” Period. That’s it. He’s a cipher, a projection, or a foil, a person with an unrealized desire or the person of unrealized desire. Who lives on a wish and a wish alone. Everything else you think you know about him is projected from “me” onto him — yes, I like the conceptual pun that it’s me who has to tell it to you, it’s me you rely upon, it’s me who narrates who the I am supposed to be. And at the same time, the “me” of the song isn’t me. Productive confusion is necessary for any good poem.
So back to numbering things, you could say there’s a seemingly manifest level of the song and thus of the person, first off. Next, you could say there’s a latent level too, as with dreams, as with all texts, as with always. You get the man-on-the-street Mr. Jones who comes from not listening carefully enough to the song: hanging out at the New Amsterdam, drink in hand, watching the beautiful women, strolling through the barrio, images of Picasso, grey guitars, wanting, watching, me on TV, fame, Bob Dylan, and so on. Go deeper and the more careful listen gives you what? Buttkiss. Butkiss? Butt-kiss? Nada. You realize this whole story you thought you knew in this song is really just someone else’s tale. Another person thought it up, wrote it out, sang it out. So much for song of myself. Shit. The whole story has been filtered through someone else’s desire/s, through someone else’s words, somebody who can play the grey guitar, hell, any color guitar. Mr. Jones, I think, doesn’t play, but his friend apparently does.
There’s a third Mr. Jones who doesn’t show up, not even in the song, though he’s everywhere. Filling the world as a trope. “Mr. Jones” of “the jonez.” The martini jonez, the OC jonez, the desert jonez, the book jonez, the work jonez, love jonez. We’ve got it bad and that ain’t good, and all of us seem to play the Jonesey role at some point. Some of us play it all the time. The modern bourgeois subject jonez. The subject of capital Jonez — now before you roll your eyes and make any disparaging comments about academic-speak or deliberate unintelligibility or intellectual posing or whatever, let me say that for my part, at least, I’m dead serious. This person of our modern age is precisely a non-person, and if we’re brave enough to look really closely in the mirror, too many of us will see it there — nothing. Just a bunch of borrowed desires produced by a system we’re stuck in. I don’t care how it sounds and if it breaks from what is usually a more direct style of writing found here, it’s the truth and it sucks and it’s to be faced. If not, take Camus’ other alternative seriously.
The blog identity is as much about this as it is about the imaginary projections of somebody else’s storytelling. The power of narration. A great line from the literary theorist Pierre Macherey is right on the point: “[Literature’s/narrative’s] discourse has a shadow-life at the edge of a radical exclusion, the exclusion of its pretended object, which does not exist” (Theory of Literary Production, p. 61).
Well then, Mr. Jones: I think it’s not just me, but it is definitely me. If nothing or no one else.
Saturday, August 05, 2006
Friday, August 04, 2006
8.04.06, Small New Development
So, I do actually have a Post of Substance to put up later on, about the pseudonym I've been using on the blog, the name not a single person has ever asked about. Curious silence, that. For now I'm going to string you along....
The development today is mildly related to the Franky Scale, which I'll post as a 6, but I'll say that right after getting up this morning it dropped drastically and suddenly, it rolled around in my gut for a while, then turned into projectile vomiting. It was a joy, I truly enjoy throwing up. Think of this clinically if this seems like too much information. I've been having nausea in some form (from mild to severe, intermittent to constant for days, etc.) on a regular basis since my second or third chemo cycle. With time it's become more severe, although impossible to predict accurately. For this I can take lorazepam, compazine, metoclopromide, or zofran (which costs something like $59/pill, fortunately mostly paid by insurance), and then things like ginger, tea, mints, popsicle, and the like. But apart from the very first cycle of chemo when I also had a fully impacted intestine and related pain, I have never thrown up, not once. That first time I think was from pain more than nausea.
This morning when I got up it was like somebody had simply pressed the big red button on a remote control pointed my way, the signal was in my stomach, I thought for about two seconds "This feels sudden...worse that usual?" About two seconds later I had a very immediate goal and target. Fortunately I made it. Anyway, that is the newest development, odd one it seems, after all this time. Good news is that today is the last day of this chemo cycle and no more xeloda will be going through my gullet for a week or so.
*ALSO, for commenters: I've been sorry to hear that some of your comments somehow "get lost" when you try to post them, so I guess just keep trying. I haven't been "moderating" them as in deleting them, they just don't always come through. You might write the comment in Word or some other program and then cut and paste so you have a back up copy.
The development today is mildly related to the Franky Scale, which I'll post as a 6, but I'll say that right after getting up this morning it dropped drastically and suddenly, it rolled around in my gut for a while, then turned into projectile vomiting. It was a joy, I truly enjoy throwing up. Think of this clinically if this seems like too much information. I've been having nausea in some form (from mild to severe, intermittent to constant for days, etc.) on a regular basis since my second or third chemo cycle. With time it's become more severe, although impossible to predict accurately. For this I can take lorazepam, compazine, metoclopromide, or zofran (which costs something like $59/pill, fortunately mostly paid by insurance), and then things like ginger, tea, mints, popsicle, and the like. But apart from the very first cycle of chemo when I also had a fully impacted intestine and related pain, I have never thrown up, not once. That first time I think was from pain more than nausea.
This morning when I got up it was like somebody had simply pressed the big red button on a remote control pointed my way, the signal was in my stomach, I thought for about two seconds "This feels sudden...worse that usual?" About two seconds later I had a very immediate goal and target. Fortunately I made it. Anyway, that is the newest development, odd one it seems, after all this time. Good news is that today is the last day of this chemo cycle and no more xeloda will be going through my gullet for a week or so.
*ALSO, for commenters: I've been sorry to hear that some of your comments somehow "get lost" when you try to post them, so I guess just keep trying. I haven't been "moderating" them as in deleting them, they just don't always come through. You might write the comment in Word or some other program and then cut and paste so you have a back up copy.
Thursday, August 03, 2006
8.03.06, Zeno's Paradox In Progress
So if someone were to ask me today, "How's the Franky Scale?" I might reply, "Is 'suck' a number?" Too many symptoms today, too poor of management. Too much suck.
Spent some time today trying to make heads or tails out of some material in a draft poem, very recent, somewhat raw, not metaphorically very sophistacated, oh dear. Anyway, it might be worth a look and to assure my reputation, or protect it rather, I simply say something like it's called "In Progress." And leave it at that. It is only in progress still; this is only the first part, and I still haven't figured out how to indent, so you get dots, imagine they're not there. The drop lines might be screwy in your browser. Here, be generous:
“In Progress”
Part 1. The Daily Psychology
2:33 in the morning and I’m alone again. Desk, lamp, pen,
cityview window, scattered papers, a modicum of memory.
After all it’s good days leavened with requisite discussions
-- not conclusions. But then too also or despite perhaps, who
should change a life, and why, too, is the question,
changing your life right now, making change to spend it
while I cash out. A cold truth. Find me some other kind.
I feel lonely, my pockets empty already and for real.
Halfway across the land, you are, all the corn and hills and continental spine,
deserts high and low, endless miles of
........................................................... . . . I want to say “possibility.” It is,
for some. Who am I to complain? I’ve had all mine.
........When Daniel died he was too young and had no warning,
no possibility left. Not a fucking red rat’s ass worth. To die
before you’re 24, to kick for a dumb fucking misstep,
of 23-years’ circumstance unleavened by little self-knowledge,
then fitted into a dirty pan of shit for genes. One of the things
that empty out the land in a wayless meaning. Full of nothing
that means. I take more pills every day than what killed him.
You can go halfway but it’s halfway in no measure,
halfway through nothing but Zeno’s paradox, all the way
into the contradiction — then, full stop. I felt my slap full
in the face, he felt everything and nothing in the same god
damned moment. The moment it all stopped
..................................................................... . . . the calls began.
You will survive any option, any choice. You will be brilliant,
turned diamond and breathless by it all. Any suffering will be
but a moment, no? Because for you there will be a tomorrow
on the other side of that suffering — so suffer, rest if you can,
then step on into the waiting, baby. And if that is the case
why not now for us? Why not more of what is possible
before it’s stripped away and turned to a desert without
the single soul needed to live it, needed to make its sunset real,
needed to count miles both in and out? The desert is real
the desert is now, so how will I stand there, in midst of it,
surrounded by it? Knowing that there is always a “road out”
for me, just a little more time, just a little more time away.
Just a little more of time before it is time. Out.
I see what’s coming. The bus with my ticket. Bus that only goes
halfway. Seats too small, too many passengers but no one to talk to.
No desire even if there were. If there were desire, then no body
on the bus. It comes, it stops where it’s supposed to and then some
of us, are we lucky, do we say “lucky enough,” to know the schedule?
To know when it’s going to stop. Lucky enough to have time
to write those few letters and pack a bag. You don’t need more than one.
You don’t need a watch. You don’t need to check your mail, anymore.
I want to know if this is luck. I want to know how to let others in,
for me, for them, is that what it is I learn, what I need to learn still?
That all can give and some pain to do so? What I’ve got, whether luck
or none, is a swirl of questions like this, a storm of rain words but not
quite the right bivouac, not quite the right fly, no tent. Not wholly
exposed to the elements which would be too dramatic, too contrived,
just not quite enough to know which question in the night’s swirl,
which to grab, which to wrestle, which to risk a hip just to answer.
Part of me feels like I’ll need both hips good for the walk
Spent some time today trying to make heads or tails out of some material in a draft poem, very recent, somewhat raw, not metaphorically very sophistacated, oh dear. Anyway, it might be worth a look and to assure my reputation, or protect it rather, I simply say something like it's called "In Progress." And leave it at that. It is only in progress still; this is only the first part, and I still haven't figured out how to indent, so you get dots, imagine they're not there. The drop lines might be screwy in your browser. Here, be generous:
“In Progress”
Part 1. The Daily Psychology
2:33 in the morning and I’m alone again. Desk, lamp, pen,
cityview window, scattered papers, a modicum of memory.
After all it’s good days leavened with requisite discussions
-- not conclusions. But then too also or despite perhaps, who
should change a life, and why, too, is the question,
changing your life right now, making change to spend it
while I cash out. A cold truth. Find me some other kind.
I feel lonely, my pockets empty already and for real.
Halfway across the land, you are, all the corn and hills and continental spine,
deserts high and low, endless miles of
........................................................... . . . I want to say “possibility.” It is,
for some. Who am I to complain? I’ve had all mine.
........When Daniel died he was too young and had no warning,
no possibility left. Not a fucking red rat’s ass worth. To die
before you’re 24, to kick for a dumb fucking misstep,
of 23-years’ circumstance unleavened by little self-knowledge,
then fitted into a dirty pan of shit for genes. One of the things
that empty out the land in a wayless meaning. Full of nothing
that means. I take more pills every day than what killed him.
You can go halfway but it’s halfway in no measure,
halfway through nothing but Zeno’s paradox, all the way
into the contradiction — then, full stop. I felt my slap full
in the face, he felt everything and nothing in the same god
damned moment. The moment it all stopped
..................................................................... . . . the calls began.
You will survive any option, any choice. You will be brilliant,
turned diamond and breathless by it all. Any suffering will be
but a moment, no? Because for you there will be a tomorrow
on the other side of that suffering — so suffer, rest if you can,
then step on into the waiting, baby. And if that is the case
why not now for us? Why not more of what is possible
before it’s stripped away and turned to a desert without
the single soul needed to live it, needed to make its sunset real,
needed to count miles both in and out? The desert is real
the desert is now, so how will I stand there, in midst of it,
surrounded by it? Knowing that there is always a “road out”
for me, just a little more time, just a little more time away.
Just a little more of time before it is time. Out.
I see what’s coming. The bus with my ticket. Bus that only goes
halfway. Seats too small, too many passengers but no one to talk to.
No desire even if there were. If there were desire, then no body
on the bus. It comes, it stops where it’s supposed to and then some
of us, are we lucky, do we say “lucky enough,” to know the schedule?
To know when it’s going to stop. Lucky enough to have time
to write those few letters and pack a bag. You don’t need more than one.
You don’t need a watch. You don’t need to check your mail, anymore.
I want to know if this is luck. I want to know how to let others in,
for me, for them, is that what it is I learn, what I need to learn still?
That all can give and some pain to do so? What I’ve got, whether luck
or none, is a swirl of questions like this, a storm of rain words but not
quite the right bivouac, not quite the right fly, no tent. Not wholly
exposed to the elements which would be too dramatic, too contrived,
just not quite enough to know which question in the night’s swirl,
which to grab, which to wrestle, which to risk a hip just to answer.
Part of me feels like I’ll need both hips good for the walk
Wednesday, August 02, 2006
8.02.06, Little to Report
One day after the IV chemo, and the nausea sets in earlier now. Last Wednesday, too, seemed like this began midday or so on Wednesday where it was more of a Thursday concern previously. So, the Franky Scale is in the 5-6 range — and this could be the result of feely rather puky right now. (Time to scramble through the pharmacy at the foot of the bed and find some nice anti-nausea meds, hm, where are you?)
The other thing, thing is, is a communication reminder for a few who have called. Thanks for the calls but please do not worry if I don't pick up or can't call back; the nature of the beast, you know. All the support is good, just sometimes a lot to manage. If anyone is worried at some point try and check the blog, keeping in my mind that a post might not be up until later in the day. Which is to say, also, it's too early in this process for rapid surprises, so sit back with a good book :-)
The other thing, thing is, is a communication reminder for a few who have called. Thanks for the calls but please do not worry if I don't pick up or can't call back; the nature of the beast, you know. All the support is good, just sometimes a lot to manage. If anyone is worried at some point try and check the blog, keeping in my mind that a post might not be up until later in the day. Which is to say, also, it's too early in this process for rapid surprises, so sit back with a good book :-)
8.01.06, IV Chemo, Last Day with GTX
Franky Scale today is simply too difficult to gauge — I was in the hospital for the chemo by infusion for four hours this morning, with the company of the Disenchanted Princess, then I was home on my ass, i.e., asleep, for five or six straight hours. Then up, eating, some of the usual, and sadly a trip to the airport again. Departures not arrivals. This time.
Today I also saw my CA 19-9 numbers from my blood drawn last Tuesday, and they are about 400 higher than last time, or they're 6200 (last number was 5780 if memory serves). I don't what the standard deviation or margin of error is on that evaluative tool, so I can't offer you much by way of "It very well could be inaccurate because of . . . " Rather, it probably is accurate; the rest of the pattern and radiography say so, and the number is probably higher today too, since today's blood is one week newer than the blood for that number. It was expected.
Also, the last day of the GTX regimin; in a week or so I'll be jumping into the land of T-GX, reading more on that option — though it appears to be a (sub?) field with little published in it — and exploring the next options.
My head is slow today, with Tuesday and all, and it's late, maybe so late not many people who checked will know that I'm still up and about. Given the situation, things are pretty good. Of course. My bad on being late, however.
Today I also saw my CA 19-9 numbers from my blood drawn last Tuesday, and they are about 400 higher than last time, or they're 6200 (last number was 5780 if memory serves). I don't what the standard deviation or margin of error is on that evaluative tool, so I can't offer you much by way of "It very well could be inaccurate because of . . . " Rather, it probably is accurate; the rest of the pattern and radiography say so, and the number is probably higher today too, since today's blood is one week newer than the blood for that number. It was expected.
Also, the last day of the GTX regimin; in a week or so I'll be jumping into the land of T-GX, reading more on that option — though it appears to be a (sub?) field with little published in it — and exploring the next options.
My head is slow today, with Tuesday and all, and it's late, maybe so late not many people who checked will know that I'm still up and about. Given the situation, things are pretty good. Of course. My bad on being late, however.
Monday, July 31, 2006
7.31.06, Double Play: The How of Fear Not Why
[So, brief intro, then dinner, then the conversation at after paragraph three.]
Part 1. Non-Conversaton
Franky Scale feels something like 6, it's been bouncing higher a few times then back down, overall an unusually active day might be the reason for this. Dinner only happening now at ten, which gives an indication.
This is my studio view, where the composing will take place:
However, there will be a post after that, something like a simulcast, or for the younger generation like an IM dialogue between two people, Disenchanted Princess and myself, which will be posted. Not live, an edited version and cleaned up version will appear tonight before bedtime. If you must sleep, sleep and get up to read it over coffee while I'm getting ready to head off to the hostpital for my very expensive bloody marys. If not sleep, then check back, we will be here.
Part 2. Late Night Conversation
me: A long quote adapted from Dr. Ira Byock's, Dying Well (1997), from a pamphlet give to me by a social worker at the SCCA recently, and only more recently actually picked up and perused by me, like this:
me: "Quality End-of-Life Care" [is what the pamphlet is about...] "Every person who confronts the end-of-life has the right to medical care aimed at relieving physical suffering. We all deserve support and care from professionals and individuals that understand the emotional suffering that is sometimes present as we strive to understand the meaning of our life and death. We also deserve the opportunity to express our hopes, fears and desires regarding death and dying and then have those sentiments respected and honored by our caregivers."
me: He goes on to say that "We may need a 'place' to stay, people to help us keep ourselves clean, and as we get closer to death, depending on our wishes, help with food and drink. We will need people to keep us company, to listen to us, and to just 'be there.'" That's it.
me: So, all of that I read and then go proceed into the body of the pamphlet proper, where it reads "IF this information is in your hands, you or someone you care about may be facing the final stage of life." Here, I hear echoes of William S. Burroughs' theories about language as virus, word virus, the contagion of a phrase or a description, of the fact -- you can call it a peformative fact / statement, if you will -- that it's in my hands. God, is it in my hands. The words are there, here, and I've got it. The banal shock of those lines are juxtaposed in my mind, set up against the schockingly banal words that open the Byock quote.
me: He writes "everyone has the right," yes. He writes, "we all deserve," yes. And a number of caregivers are around, could be around, should be around, who can "strive to understand" the simplest things for us: the manner in which we try to understand the "meaning of our life and death" he writes. He's missed one point, there should also be striving after "the meaning and the lack of meaning of our life and death"--there is nothing wrong with confronting, squarely & actively, that No Meaning might be the right answer. It does not reduce anyone to nihilism, no body to relativism moral or any other variety, no person goes bad for it. It's merely one more option, a call to search for something, an option to make something where nothing existed before.
me: So, why, what, and whence, with my now long post? The idea of a "place" to do this, to get all your understanding, to work out your wishes, to need people, and to be needed. I read all this and I think about issues that have rarely if ever crossed my mind before. I read all this and am reminded of my where, that my where-I'm-going is over there, to such a "space." I read it all and think goddam, once again, how complex life is and is it really all happening as it seems to be.
Kim: It makes sense that these issues wouldn't have crossed your mind before, in the sense that no one does, no one thinks about these issues till they find themselves in the situation of holding the pamphlet, in whatever role
Kim: It's worth highlighting your choice of words, the shockingly banal
Kim: The banality is a bit hard to comprehend and will probably be harder to deal with in the long run. That this shit happens, just that no one is prepared to have it happen to them.
Kim: The quote is quite interesting, in the many perspectives that it incorporates, the many angles to consider, and yet all from the viewpoint of being the 'patient' and being entitled to it. It's articulate and insightful, and all about the things we never have to think twice about.
Kim: As such, it's almost like a mission statement, written in reverse, as a pledge. That as a 'caregiver,' I will provide these things because that is what dignifies this experience. I wonder though, how do I fit into all of this? Am I part of the 'caregiver' capacity? I would try to argue not, because there is a sense of selflessness that I lack . . .
Kim: Even as I try to listen, to just 'be there,' to be good company - I'm not really trying to 'give' anything. I'm still extracting from the situation what I will. While I'm not the one who is sick, not suffering the symptoms physically, I still need to feel like I'm a part of the experience.
Kim: But then I wonder why?
Cancer sucks
Kim: There isn't much more to say about it . . . but that doesn't make it go away, nothing makes it go away
Me: Remember this one? Tell me what you think about this quote—which is foremost what comes to mind when I look again at the one above --, now, in the new context we find ourselves in: “Each man is master of his own death, and all that we can do when the time comes is to help him die without the fear of pain” (p. 10 Love in the Time of Cholera)
Kim: How?
This one is much easier to process, shorter text, easier "instruction" to comprehend but it still just opens the question. i agree wholeheartedly that that is the way to go, to be able to help alleviate the fear
me: Nothing makes it go away, I agree, with all the sucking that goes with it. So why write so much? Is it perhaps a way for me to make the pain go, to see it get pushed a little farther, a strategy for denial....what do you think?
Kim: writing seems to help answer the how, depending on how the 'reading' actually occurs
me: Meaning?
Kim: i'm not sure where the denial comes in, but dealing with just what is written as truth it helps if you lay out the how or if what you write is read as essentially 'the how"
me: ... the "how" of making is easier?
Kim: i suppose it imparts a meaning to certain things, certain actions become conscious if they are part of a greater. specifically, the issue of fear that i know what my fear is, what fuels it
Kim: and, i know that it's different than yours
… in a way, to hear/see/read your fear helps push mine further away. i can focus some energy in trying to help you deal with yours
Kim: it takes out the room for projection, where I can't impose what I feel to what you 'must' be going through, what i imagine it should be like
me: So it could be seen as a "how" of fear, we have the how of fear. And what you wrote makes me wonder another "how," which is how one deals with this with some sense of equanimity? Maybe you've already started answering that....?
Kim: what do you mean by equanimity?
me: Some sense of peacefulness in action, in doing a thing with poise, keeping a cool head despite the fucked-upness of the greater situation.
me: For example, the way you seem to deal with it--or is that too personal to put it that way?
Kim: well, most of those things are subjective in nature are they not?
if you're asking specifically about how i react to this
i wish i could say that it was purposeful and/or conscious, but i'm not sure that it is
it comes down to keeping the finality of the situation as the end point (duh . . =)
i have a lifetime left to figure it out, the rest of it
but in the immediate, i've already been given a deadline
it happens within a timeframe, or never again
Kim: so, plan backwards if you will
me: I will.
Kim: and because the egg timer is chipping away. the longer you think about what you will do, sit and ponder the million and one possibilities, instead of just doing it becomes the exercise in futility. not to be harsh and/or dismissive, but what's the point in thinking why o why?
Kim: it just is, pause to think, then move, one step at a time like always. i think writing helps to lay out the thoughts, think on the go. it helps me get from one place to the next, to follow where you're going in your head
[a typo repeat, maby better left in...]
Kim: it just is, pause to think, then move, one step at a time like always. i think writing helps to lay out the thoughts, think on the go. it helps me get from one place to the next, to follow where you're going in your head.
Kim: it helps the how, how i can be most helpful, how can i help with the fear
me: I can live with that. Not so much a "why" pointed at the egg timer, but a "how" directed at the fear.
Part 1. Non-Conversaton
Franky Scale feels something like 6, it's been bouncing higher a few times then back down, overall an unusually active day might be the reason for this. Dinner only happening now at ten, which gives an indication.
This is my studio view, where the composing will take place:
However, there will be a post after that, something like a simulcast, or for the younger generation like an IM dialogue between two people, Disenchanted Princess and myself, which will be posted. Not live, an edited version and cleaned up version will appear tonight before bedtime. If you must sleep, sleep and get up to read it over coffee while I'm getting ready to head off to the hostpital for my very expensive bloody marys. If not sleep, then check back, we will be here.
Part 2. Late Night Conversation
me: A long quote adapted from Dr. Ira Byock's, Dying Well (1997), from a pamphlet give to me by a social worker at the SCCA recently, and only more recently actually picked up and perused by me, like this:
me: "Quality End-of-Life Care" [is what the pamphlet is about...] "Every person who confronts the end-of-life has the right to medical care aimed at relieving physical suffering. We all deserve support and care from professionals and individuals that understand the emotional suffering that is sometimes present as we strive to understand the meaning of our life and death. We also deserve the opportunity to express our hopes, fears and desires regarding death and dying and then have those sentiments respected and honored by our caregivers."
me: He goes on to say that "We may need a 'place' to stay, people to help us keep ourselves clean, and as we get closer to death, depending on our wishes, help with food and drink. We will need people to keep us company, to listen to us, and to just 'be there.'" That's it.
me: So, all of that I read and then go proceed into the body of the pamphlet proper, where it reads "IF this information is in your hands, you or someone you care about may be facing the final stage of life." Here, I hear echoes of William S. Burroughs' theories about language as virus, word virus, the contagion of a phrase or a description, of the fact -- you can call it a peformative fact / statement, if you will -- that it's in my hands. God, is it in my hands. The words are there, here, and I've got it. The banal shock of those lines are juxtaposed in my mind, set up against the schockingly banal words that open the Byock quote.
me: He writes "everyone has the right," yes. He writes, "we all deserve," yes. And a number of caregivers are around, could be around, should be around, who can "strive to understand" the simplest things for us: the manner in which we try to understand the "meaning of our life and death" he writes. He's missed one point, there should also be striving after "the meaning and the lack of meaning of our life and death"--there is nothing wrong with confronting, squarely & actively, that No Meaning might be the right answer. It does not reduce anyone to nihilism, no body to relativism moral or any other variety, no person goes bad for it. It's merely one more option, a call to search for something, an option to make something where nothing existed before.
me: So, why, what, and whence, with my now long post? The idea of a "place" to do this, to get all your understanding, to work out your wishes, to need people, and to be needed. I read all this and I think about issues that have rarely if ever crossed my mind before. I read all this and am reminded of my where, that my where-I'm-going is over there, to such a "space." I read it all and think goddam, once again, how complex life is and is it really all happening as it seems to be.
Kim: It makes sense that these issues wouldn't have crossed your mind before, in the sense that no one does, no one thinks about these issues till they find themselves in the situation of holding the pamphlet, in whatever role
Kim: It's worth highlighting your choice of words, the shockingly banal
Kim: The banality is a bit hard to comprehend and will probably be harder to deal with in the long run. That this shit happens, just that no one is prepared to have it happen to them.
Kim: The quote is quite interesting, in the many perspectives that it incorporates, the many angles to consider, and yet all from the viewpoint of being the 'patient' and being entitled to it. It's articulate and insightful, and all about the things we never have to think twice about.
Kim: As such, it's almost like a mission statement, written in reverse, as a pledge. That as a 'caregiver,' I will provide these things because that is what dignifies this experience. I wonder though, how do I fit into all of this? Am I part of the 'caregiver' capacity? I would try to argue not, because there is a sense of selflessness that I lack . . .
Kim: Even as I try to listen, to just 'be there,' to be good company - I'm not really trying to 'give' anything. I'm still extracting from the situation what I will. While I'm not the one who is sick, not suffering the symptoms physically, I still need to feel like I'm a part of the experience.
Kim: But then I wonder why?
Cancer sucks
Kim: There isn't much more to say about it . . . but that doesn't make it go away, nothing makes it go away
Me: Remember this one? Tell me what you think about this quote—which is foremost what comes to mind when I look again at the one above --, now, in the new context we find ourselves in: “Each man is master of his own death, and all that we can do when the time comes is to help him die without the fear of pain” (p. 10 Love in the Time of Cholera)
Kim: How?
This one is much easier to process, shorter text, easier "instruction" to comprehend but it still just opens the question. i agree wholeheartedly that that is the way to go, to be able to help alleviate the fear
me: Nothing makes it go away, I agree, with all the sucking that goes with it. So why write so much? Is it perhaps a way for me to make the pain go, to see it get pushed a little farther, a strategy for denial....what do you think?
Kim: writing seems to help answer the how, depending on how the 'reading' actually occurs
me: Meaning?
Kim: i'm not sure where the denial comes in, but dealing with just what is written as truth it helps if you lay out the how or if what you write is read as essentially 'the how"
me: ... the "how" of making is easier?
Kim: i suppose it imparts a meaning to certain things, certain actions become conscious if they are part of a greater. specifically, the issue of fear that i know what my fear is, what fuels it
Kim: and, i know that it's different than yours
… in a way, to hear/see/read your fear helps push mine further away. i can focus some energy in trying to help you deal with yours
Kim: it takes out the room for projection, where I can't impose what I feel to what you 'must' be going through, what i imagine it should be like
me: So it could be seen as a "how" of fear, we have the how of fear. And what you wrote makes me wonder another "how," which is how one deals with this with some sense of equanimity? Maybe you've already started answering that....?
Kim: what do you mean by equanimity?
me: Some sense of peacefulness in action, in doing a thing with poise, keeping a cool head despite the fucked-upness of the greater situation.
me: For example, the way you seem to deal with it--or is that too personal to put it that way?
Kim: well, most of those things are subjective in nature are they not?
if you're asking specifically about how i react to this
i wish i could say that it was purposeful and/or conscious, but i'm not sure that it is
it comes down to keeping the finality of the situation as the end point (duh . . =)
i have a lifetime left to figure it out, the rest of it
but in the immediate, i've already been given a deadline
it happens within a timeframe, or never again
Kim: so, plan backwards if you will
me: I will.
Kim: and because the egg timer is chipping away. the longer you think about what you will do, sit and ponder the million and one possibilities, instead of just doing it becomes the exercise in futility. not to be harsh and/or dismissive, but what's the point in thinking why o why?
Kim: it just is, pause to think, then move, one step at a time like always. i think writing helps to lay out the thoughts, think on the go. it helps me get from one place to the next, to follow where you're going in your head
[a typo repeat, maby better left in...]
Kim: it just is, pause to think, then move, one step at a time like always. i think writing helps to lay out the thoughts, think on the go. it helps me get from one place to the next, to follow where you're going in your head.
Kim: it helps the how, how i can be most helpful, how can i help with the fear
me: I can live with that. Not so much a "why" pointed at the egg timer, but a "how" directed at the fear.
Sunday, July 30, 2006
7.30.06, Cleanliness is Next To
New book cases, less clutter, Franky Scale: 7. Pho for brunch, farmer's market, fresh flowers. More to come. . .
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