What to do? Given that sleep was no longer possible and I didn’t want to wake San (she fell asleep on our couch an had a nice little snore going on), the answer was either read something or write something. I figured I still had at least an hour before turning on the coffeemaker was a viable option - I try to let San sleep at least until 6:00 a.m. - and it was still dark outside.
“Darkness, take my hand,” comes into my head for no reason I know of, but then I remember it is the title of a good Dennis Lehane mystery novel. Lately these random titles, lyrics, snippets of poems, and other fleetingly disconnected words and images zoom in and out of my head.
I have no idea why. I figure its just part of reviewing my life before dying. Not a bad thing at all, so long as the review moves slowly.
To enable my best memories of our lives together, San loaded our photos from travels and celebrations and times with family and friends that were about nothing in particular, but show us being us, into the Apple TV system in the living room. When we are in between movies or shows or I am just content to sit still and watch the TV screen instead of the computer screen, I get a family-friendly version of images that trigger what Ernest Becker calls “an inner newsreel” (1962).
The “inner newsreel” is a powerful idea that, when coupled with his “denial of death” goes well beyond my more personal and admittedly pedestrian use for it. But I don‘t think Becker would mind. For him:
“individuals' characters are essentially formed around the process of denying their own mortality, that this denial is necessary for us to function in the world, and that this character-armor prevents genuine self-knowledge.”
For me, it is no longer possible to deny my own death. I know the trajectory of my cancer. I feel the increasing levels of pain. We know the disease has spread. So it is that I now awake every day in a surreal and unfamiliar place - the existential space for making final, irrevocable choices - where I stand without the “character-armor” or any real ability to deny my own mortality, but find that I am newly open to a kind of self-knowledge that, over the past 14 months and still counting, is in fact occurring.
I did not want to die of cancer. Hell, I did not want to die at all. But once diagnosed with this damned deadly disease and left to live for an uncertain period of time with few uncertainties about where this narrative had to go, I wanted to learn from cancer and to share with others what I had learned.
I wanted, if nothing else, to understand myself not as someone defined by cancer - every cancer patient says that and means it - but instead by what I could learn about my own death and about the process of my own dying. Why? Because for some reason I cannot yet name, I think that is something I’m supposed to do, and to learn about myself and this earthly life, before I move on.
There is no doubt that I have been profoundly changed by my cancer. We - my beloved family - also have been and continue to be profoundly changed by my cancer. We are learning not only how to live with it but how best to die from it. And that is a question that - believe me - I never before wanted to explore.
Here’s a short but illustrative story that you, too, may find useful.
Back in 1985 or maybe it was 1987, there was one of the legendary “Alta Conferences” for organizational and ethnographic scholars way up high in the beautiful mountains of Utah. One feature of the conference was some “walking around” time, a time for new friendships to blossom and for the contemplation of our papers, as well as just hanging out enjoying each other’s company in this peaceful mountain paradise.
On one of our breaks for “walking around time” I struck up a conversation with a remarkable scholar named Lyle Crawford, a Buddhist who later achieved some notoriety - he made the cover of The Chronicle of Higher Education - for “giving back” his tenure. He was and is a man who emits an undeniable inner joy. He lives simply (one knife, one fork, one spoon; one bicycle; etc.) according to his Buddhist beliefs and gives away most of what he earns. Three years ago I learned that Lyle had retired to a Buddhist retreat in China, and his email to me about it was as cheerful and life affirming as ever. He was, I knew, preparing himself for a “good death.” Little did I know at the time that shortly I would be doing the same thing.
Zoom back to 1987 or 1985, zoom in to Alta, zoom in further to two middle-aged white guys talking about death. Earlier in the day Lyle had presented a paper - the “crocodile narrative,” a moving surreal account of a Peace Corps volunteer whom had died swimming across a river in Africa, and whose last words were - as Lyle put it - a “series of Ohs, as in O-o-o-o.”
Lyle had written quite a story. He had written about a sudden violent death in such a way as to make death a character that can only be understood in retrospect. By this I mean that as you read the story you have no idea what will happen. You are in Africa. It’s hot. The volunteers decide to play a game that involves swimming across the river. While they play their game more and more native Africans line the riverbank, watching, but no one present thinks to ask them why. They should have. The natives were there because they knew the river and because they knew that crocks owned it. What they could not figure out was why a group of white people was swimming, making noise, and otherwise disturbing the afternoon with a silly game. So they came to watch. Did this white boy maybe possess some juju that would dissuade the crock? Or, failing that, had this fellow prepared himself for death?
The Os at the end of the last sentence he would ever speak are ambiguous. We don’t know what he thought or how he might have been prepared for his own death. All we know is that he died in the water, one Oh-o-o-o after another.
The story was and is instructive. Without overt discussions of weighty issues involved in the death of a colleague, the story Lyle wrote speaks to a denial of death, to hubris, to the everyday belief that nothing so bad will happen to us.
Ultimately, the story as a story speaks volumes to our inability to know what to say or do when death visits us or someone we love or even someone we have just met. I was humbled by the hearing of it, and curious about his motivation to write it. So I asked him. Lyle smiled and said, simply, that it was written out of his own need to prepare himself for his own death.
I don’t remember what I said in reply, or if I said anything at all. I know only that I walked away from that conversation in a kind of narrative daze that was to become how I remembered Lyle and his story. I was clearly in denial of death. I just couldn’t handle the weight of it. I wasn’t ready for it.
Or so I told myself. But there was always a cruel echo that followed my empty words that were all about the denial of death as those words silently moved through my brain and body. “I wasn’t ready for it,” I’d say to myself as my inner newsreel replayed the crock story. And then, as if on cue … Bwahahahhahahaha!”
Indeed. Who among us is ever ready? Who among us has done the soul work, the end-of-life narrative work, to prepare ourselves adequately for our own death? Oh, I know what some of you are thinking. You are thinking that as Christians (or fill in the blank here for your faith tradition) you are already saved. Maybe you have done the homework, memorized your sacred text, gone a mission, brought others to the teachings of Jesus or Moses or Mohammad or Joseph Smith or Buddha or whatever. That’s all to the good, right?
Yes, probably. But that is not the same thing as becoming prepared for your own death. You may have ensured an afterlife, I don’t know about that, but it's the end of life that we are talking about here. The process of the body dying and the coming of what I can only think to call “the Great Whoosh” that provides a conduit between this world and whatever happens next.
I write these words out of a genuine curiosity. I don’t have an answer. Not yet. What I do have is pain. What I do have is a diminished capacity to do a lot of things you take for granted and that only months ago I did too. What I am doing is dying. It’s not easy. It’s not pretty - I certainly do not have a face made for crying. And it hurts. Even with the drugs, it hurts.
And then there is this: No one tells me anymore: “hey, you look good!” That is because I do not look good. I look in the mirror and what I see is a man who has aged in obvious ways over the past month or so, a man who is growing a Hemingway-esque beard because shaving my whole face is more of trial than a triumph, particularly when (maybe it's the drugs) I forget one side or the other. What I see when I look into the mirror is a darkness below my eyes, eyes that no longer shine, eyes that quickly look away from my own eyes, my own face, my own self.
What I see is me beginning to die, from the eyes that no longer shine all the way down my badly aching guts to legs that have lost muscle tone to feet and ankles that swell into pig-like forms that I no longer feel due to the numbness of chronic neuropathy. And this is me, whining like a man I never wanted to be, and I apologize for it, but there it is. To whine at least once in a while is to be expected I guess; it seems to be part of the process.
One more thing. I, too, have been guilty of, if not exactly a denial of death, then certainly in something like a belief I was entitled to so many years, that I still have work left to do that would have stalled the Reaper, or any one of one hundred and one other black-and-white Dalmatian excuses that sounded pretty good when I said them, but that really only marked me as Everyman: glad to be alive and in fear of dying. As I have said before in this blog and elsewhere, one of the most profound things I’ve learned is that “God jokes with his best ones.”
I have been profoundly challenged by the fact that I am dying and that my acceptance of it is a necessary and even a good thing. It’s not a challenge to the death I so long denied would happen to me, but instead it is a feeling of moving toward something else. As a result I know in my heart, in my soul, that I am still evolving in some significant ways: I view every day as a gift and a blessing; as a result I focus more on the positive, on helping others, and there is a new spirit of gratitude and forgiveness that releases me from the firm hold of my old evil friend - the ego.
The key to my liberation from a fear of dying is to move away from the totalizing concern for the loss of self that death represents. San’s placement of the pictures from our past, real images to guide memory, does precisely that work. Or at least gets the process started. I see Nic and Alyssa smiling for the camera on Hamilton High School graduation day and I focus on them, their relationship, and their experiences in high school. I see our niece Tori Bray Hastings learning how to properly can vegetables in Aunt Rosa’s abundant kitchen. And I see San and a guy who looks a lot like me - thinner younger … yeah that guy - holding hands in front of a 15th century stained glass window at a college in Cambridge. Each one of these images reminds me of happier times. They also encourage me to think outside of my self.
The pain reminds me that what I have accepted, what San and Nic and (I hope) others have accepted as well, is that from here on out our journey through Cancerland is all about managing the pain. Which means staying ahead of it. Which means never saying no to good ol’ Oxy and his friendly gang of associates, including the anti-seizure med, Gabapentin, and the steroid Dexamethasone.
To the painkillers you can add the rest of my regimen of pills: the twice daily blood sugar; the once a day blood pressure; the twice daily B-12 and its partner “Nerve Shield”; the once daily Magnesium to accompany the stool softener and liquid Miralax mixed with Cranberry juice … and then here comes another lyric into my brain, this one from Donavan Leitch’s 1973 release “The Intergalactic Laxative” on Cosmic Wheels:
Oh, the intergalactic laxative,
Will get you from here to there.
Relieve you and believe me,
Without a worry or care.
If shitting is your problem,
When you’re out there in the stars,
Oh, the intergalactic laxative
Will get you from here to Mars.
Fourteen months ago I didn’t take any pills other than a daily vitamin and half an aspirin. Fourteen months ago I wouldn’t have laughed at Donavan’s lyrics quite so loudly. But I’ve had fourteen pretty good months to do a lot of the early work of dying, and for that time - and whatever time we now have left - I will be forever grateful.
I’m not done yet. Not yet. Nor am I dissuaded from my belief that I am preparing for whatever come next surrounded by a profound love and beneath the cosmic stardust that someday I hope to rejoin. Final lyric, from Joni Mitchell, zoomed in my head as it was sung at Woodstock by Crosby, Stills, Nash, and Young:
Well maybe it is just the time of year
Or maybe it’s the time of man
I don’t know who l am
But you know life is for learning
We are stardust
We are golden
And we’ve got to get ourselves
Back to the garden …