The air is cool but sunlight fills the yard. I haven’t been posting much here because my days have all been pretty much the same within a narrow range of sameness. The quality of the light I see when I look out over the river changes over the course of a day: early, it is tinged with yellow, shifting as the morning progresses toward something more neutral, until by midday things present themselves in their own colors. By evening the yellow quality returns. This is all just the physics of light waves. So far so good. But despite the plain science of light, there is some residue of meaning or perhaps only a feeling that inheres in the light. Is it just one of those things that’s “in our heads,” or is there something more? What’s the extra thing that we feel when we allow ourselves to enter the light? Mere illusion? I don’t think so, and can only conclude we human beings–and animals even more so–have the ability to sense the invisible aspects of reality. That light inside the light. The overwhelming greenness of the day is now in full effect & the ordinary light pours down, its invisibles withdrawn into a noon silence. The old Romans thought of noon as a kind of witching hour, a moment of stasis when shadows stand & shiver as noon clicks over into afternoon.
In Zen we say that everything is empty, by which we mean that nothing exists except in relation to everything else–nothing has intrinsic existence. We also say that the path is itself the goal, but since the path has no intrinsic existence, we have nothing to stand or walk upon, or so the Diamond Sutra says. The challenge is to put one foot out after the other knowing that the path is empty. Or full.
The second round of my oral chemo has five more days to run. This second run went fine until a couple of days ago when enough chemical built up in my system to cause considerable nausea. There is nothing, really, to be said about nausea. Everybody knows what it’s like, though reportedly some people find vomiting less awful than others. I am among the “others.” Jenny Diski writes in In Gratitude that “there is nothing [she] dislikes more than being sick,” and goes on a little later to put it in these terms: “Do I want to live another year or so [by taking the chemo pills] or do I want to feel ill and eat when I haven’t the slightest appetite?” To do this chemo you have eat food with your medication–otherwise your body, quite rightly, rejects it in the quickest way it knows how. Diski comments on her own question: “It’s a new perspective.”
Given the choice between being consistently ill and adding , in her case, a year or so of life expectancy, Diski chooses to forego the chemotherapy, accept an earlier death, & to die, at least, without the added indignity of regular nausea & vomiting.
Diski’s chemotherapy must have been much more unpleasant that mine, since it is only the final week of each run that has even approached what she describes. But I am far from criticizing her choice. Especially for a writer, someone who works with her mind, being deprived of the ability to think clearly because of nausea would be a terrible deprivation–in her circumstances, I might well make the same decision.
The second round (of three) of my chemotherapy has five more days to run; then I will have two weeks off, then another 28 days on. (Funny that they use the moon calendar rather than the solar to set the duration.) I’m dealing with it pretty well, all things considered. Have been getting some writing done, taking care of the business of life, with only the occasional bout of misery. Considering that this is supposed to buy me some indefinite period of more or less normal life when it is over, I’ve made the bargain–I’ll stick it out. Of course, contemplating that “indefinite period” and what lies beyond it can be depressing, but I try to dwell as much as possible in the moment.
And face it, anyone reading this is in my situation. A high school classmate of Maurice Sendak’s, meeting him in later life, asked him how it felt to be famous. “I still have to die,” Sendak replied. Not tactful, but true. So what should you do?
- Make a will. You can now do this interactively on the internet, Google around & find a service that fits your preferences, then go through the process. You can save your work & return to it. It took me about four hours over two days. Doing this may prompt you to make sure that your savings & other financial arrangements are in order & especially that beneficiaries are named & recorded.
- Make a health care proxy. Different people want different kinds of care as they approach death. Some want to struggle as long as possible for life; others want to find the quietest most peaceful road out of town. The same sites that allow you to make a will online have the forms for a health care proxy. It will take you through the necessary steps so that you can spell out what kind of care you wish to receive. (Going through this process helped me to clarify my own thinking.) A proxy allows those responsible for your well-being to know what you want when you can no longer tell them. It also relieves those same people of having to guess what you would want. It would be unjust to put anyone in that position.
These may seem like platitudes. Even if they are, you will be reducing the total amount of grief in the world by some small increment by taking my advice. Even if you are young.
Note: I haven’t done a list post for quite a while–it’s a form that allowed me to find a way into using this space creatively again about six months ago, after a long break from writing, so I’m partial to it. It occurred to me while writing the last post that I might have avoided some of the semantic circling with a list, but rather than recase that piece, I think I’ll just start fresh.
- My situation is that I have been diagnosed with a form of kidney cancer that they tell you up front does not have a cure.
- But they also tell you that you can have an extended period of health with treatment.
- I am undergoing treatment. This consists of taking a particular drug for three months with two weeks off the drug twice during the period of treatment. The side-effects are not bad. At the moment, sleepiness when I’d like to be awake & insomnia (sometimes) when I’d like to be asleep.
- Because the tumor spread into my left hip, I have trouble walking without support, so I use a walker. I would like to graduate to a cane, which would give me a lot more mobility. I also spend most of my time sitting up in bed & though it is no longer very difficult to get up & down, I am slow & being slow when one is used to being fast is frustrating.
- I have to the best of my ability taken care of financial & other arrangements so as to make, when the time comes, a responsible exit from this life.
- I increasingly find myself entertaining notions of rebirth that I would have rejected as infantile wish-fulfilment only a few months ago.
- I am not really afraid of death, but I fear the loss of autonomy that accompanies modern, technological medical care; at the same time, I am grateful that I have access to that care. I have does as much as possible to insure my wishes are observed when I can no longer express myself.
- But I have been feeling a good deal of regret lately over things I had wanted to do that have been moved off the board. I have to use the markers that remain on the board & that has engendered some resentment.
- I am not much interested in distractions & entertainment, but I am deeply attached to my ability to continue to work at making poems & engaging the world through writing. Reading still feels worthwhile–both as a higher form of distraction & as education.
- The only other things that interest me deeply these days is talking to people–close friends I’ve had for a long time, mere acquaintances & everyone in between. I find people’s conversation endlessly worthwhile. The most worthwhile of all, though, is the conversation of friends. I am fortunate to have friends & to have them close enough that they can drop by to talk.
- No list, by its very nature, can be exhaustive; yet anyone’s situation contains an infinite number of potential items. This list, like any list, is a kind of snapshot of my situation. I apologize to any friends reading this who might be bothered by a certain frankness in some of the items, but this is where I am now. I have been feeling a little depressed & frustrated & resentful & regretful over the last few days. One way I deal with these states of mind / body is to write about them.
This second round of chemotherapy is not uncomfortable so far, the only pronounced side-effect being a pervasive sleepiness that leaves me unable to do much more than listen to audiobooks. (Have been listening to Andrea Wulf’s magisterial The Invention of Nature: Alexander von Humboldt’s New World, which I found endlessly fascinating.) I remember the sleepiness from my first round of chemo & in comparison with that round this one has been pretty easy so far; but persistent sleepiness, while pleasant enough at first, gets pretty boring after a few days. I’ll open my laptop with the idea of writing something & ten minutes later wake up staring at the screen, mouse still gripped in my right hand. I am missing that manic phase a few weeks ago where I wrote a long poem & revised many others, wrote long blog entries, etc. etc. Now all I can manage are these little squibs. I like to think my body is putting all its energy into dealing with cancer cells & doesn’t have the reserves left over for intellectual activity–or is that just fanciful? Probably. Feeling a bit more alert this afternoon, so maybe this is a phase to be passed through. I would like to get back to doing some creative work, which is the one thing, really, that makes my situation tolerable. I’m really not interested in distractions, these days. I want to be working or sleeping, basically, with the two of them balanced in some kind of homeostasis. That & talking to friends give me a sense of well-being, the feeling, perhaps an illusion, that I have some control over my situation.
And what is my situation? I’ve used the word half-a-dozen time above & it could, I realize, begin to sound like a euphemism for having cancer–an avoidance of the harder language. Actually, it’s a term of art in Jean Paul Sartre’s philosophy that means something like “the human condition applied one case at a time”–it is always particular, never general. So my situation is having cancer, but also of being able to do a large number of things not directly involved with my diagnosis & associated disability, especially my lack of easy mobility. I won’t say that every trip to the kitchen or bathroom is a struggle, but every trip involves a walker & the inability to carry objects easily from one place to another. I use the walker because there is pain in my hip, but if it were only pain I would not use the walker; the pain is a signal of weakness & lets me know I cannot trust those particular muscles to support the weight of the left side of my body. (I’m sorry if this much description seems self-pitying–perhaps it is–but I indulge the descriptive language in an attempt to set out a phenomenological understanding of just what my situation is–to be clear about it.)1
Continuing to use Sartre’s language, one must pay attention to one’s situation in order to keep from falling into “bad faith,” or merely playing a game with one’s situation. Sartre’s humorous example of bad faith is the supercilious French waiter with his stiff yet condescending manners & neatly balanced tray falling into the game of pretending to be a supercilious French Waiter. In Zen, we often talk about acting spontaneously. Acting spontaneously, one cannot fall into bad faith; but to back up one micron from spontaneous action is to plunge headlong into bad faith. My sickness has made me acutely aware of the ease with which my situation can lead to bad faith–to being The Perfect Zen student, or the Good Patient, or any kind of exemplary role. So, I can be a Zen student, or a patient, or a grumpy old man, just so long as I am owning that identity at that moment. Aside: From the patient’s perspective, it is very, very easy to see which of the medical staff is acting in good faith & which not. So obvious as to be comical.
Enough existentialist navel-gazing for one afternoon. In some of these posts it feels as if I just keep circling the same set of irresolvables without being able to dive into the center of what becomes not much more than a semantic tangle. Well, that’s what we language-heads do! [Throws up hands in mock disgust, the laughs–ironically?]