He was a professional engineer, and a good one, but when it came to the business of dying, he was a rank amateur. That in itself is no bad thing. The “am-” in “amateur” derives from the Latin word for love. It has been suggested that the root of the Latin for love, am, had its origin in baby talk, like yum-yum or mmmm! an expression of delight. There can be no doubt, in reading my father’s journals, that he was in love with the engineer’s way of grappling with the world. Even in the midst of paralysis and pain he took delight in measurement, number, and graphical analysis. My dictionary of English usage says that the word “amateur” has acquired “a faint flavor of bungling and a strong flavor of enthusiasm.” That faint flavor of bungling devalues an otherwise honorable word, and certainly devalues what he was doing on his deathbed. He may not have had the professional expertise of the doctors and priests who came to his bedside, but he matched them step-by-step for enthusiasm.
I am now seventy-eight years old and have never witnessed a human death. I have been there as loved ones—my father and mother, most prominently—awaited the approaching darkness, but I was not present when the last flicker of light was extinguished. For this, I suppose, I should feel grateful, retaining a kind of innocence, a welcome lacuna in the realm of possible experience. I think of how for so many in the world death is a commonplace and sometimes grisly presence.
It is a decisive moment, that transition from life to non-life, amazingly abrupt when one thinks about the long, rich course of a life. I think of that dream of my father’s in which he was a ball of twine bouncing down the stairs, unwinding; death is the difference between string and no string. Virginia Woolf has an essay called “The Death of the Moth.” She watches a tiny moth flutter against a windowpane, from one corner to another. “Watching him,” she wrote, “it seemed as if a fiber, very thin but pure, of the enormous energy of the world had been thrust into his frail and diminutive body.” She imagined the moth’s life as a thread of vital light. And, of course, as she watched, the thread ran out. The spool of the insect’s metabolism stopped turning. “As I looked at the dead moth, this minute wayside triumph of so great a force over so mean an antagonist filled me with wonder. Just as life had been strange a few minutes before, so death was now as strange.”
That last Christmas, as my father’s string ran out, all six of his children came with our families from our dispersal across the country. We stuffed ourselves into the family home and a big RV that Uncle George was kind enough to park in the backyard. While we were there, in Chattanooga, we took turns spending the night in the hospital room, giving Mom a break (she was, after all, teaching English at Notre Dame High School). The grandchildren too made their visits; they knew the end was not far away and that this would be the last times they would see Grandpa. All of these visits are recorded in his journal; they were more grist for his mill.
On Sunday, December 23, 1973, my father filled 37 pages of his journal with notes! At 12:05 AM he notes that his face is 12 inches from the side rail of the bed, he hopes for sleep, and his water pitcher is empty. Almost 24 hours later, at 11:58 PM, he records “Chet has gone to the washroom” (it was my turn to spend the night in his room), a “degas” (flatulence), and a drawing of the positions of his legs, rendered with a precision that would have pleased Thomas Ewing French. In between, 37 pages of mostly trivial details, the sorts of things that are usually the unconscious background of a life. As his foreground life recedes into a fog of pain and medication, the background moves forward. Reading these 37 pages is a reminder of how much our foreground lives are sustained by a background that runs more or less on autopilot.
3:01 AM. Can hand roll both legs to maximum position, 5 degrees from horizontal.
Family. Work. Play. The tastes and aromas of a good meal. The mellow daze that comes with a stiff drink. News, sports, books, entertainment. A pretty woman, or handsome man. Sex. A sunset. A starry night. These are the things that fill our foreground days. The background fades. Heartbeat. Breathing. Digestion. Elimination. All utterly crucial to maintaining the foreground, but they require not a single conscious thought. Until. Until death raps on the door.
7:06 AM. Nurse came in to read temp & pulse. She said “What time do you want me to make your bed?” I told her I could not even think yet.
“It is not easy to live in that continuous awareness of things which alone is true living,” wrote the naturalist Joseph Wood Krutch, a writer I first read at my father’s suggestion. And, of course, Krutch was right. Our brains are separated from the world by the permeable membrane of our senses. Attention flows outwards. Impressions of the outer world flow inwards. Of this two-way traffic—attention, awareness—we create a soul.
At this moment, as I write, I sit at my desk on a hillside in the west of Ireland, my father’s journal open at my side. Sunlight streams across my computer keyboard. A daddy-long-legs spider spins its web under the shelf above my desk; I touch the web with a pencil point and the spider does a dervish dance. Outside the window, clouds scud in from the Atlantic; there will be rain in the afternoon. I try to be aware. Awareness is partly innate, I suppose, but awareness can be learned. My father was aware. He paid attention. Everything was of interest. I learned at his side. And now pain and immobility had scrubbed away the world out there beyond the membrane. Now everything became focused on what was previously background. Even the marrow in his bones calls out for attention.
10:20 AM. It is quite a feat to log roll whole body from middle of bed to right rail and hold for 2 or 3 minutes then roll back when you are in the UP cycle or DOWN cycle of the “ENERGY CYCLE”
Continuous awareness: It can be exhausting. Which is why, I suppose, we sometimes wish for the mind to go blank, for the windows of the soul to close, for darkness to fall. Fortunately, the one thing we don’t have to attend to is awareness itself. The brain does its thing without the least bit of conscious control on our part.
Nothing we know about in the universe approaches the complexity of the human brain. What is it? A vast spider web of neurons, cells with a thousand octopus-like arms, called dendrites. The dendrites reach out and make contact at their tips with the dendrites of other cells, at junctions called synapses. A hundred billion neurons in the human brain, with an average of 1,000 dendrites each. A hundred trillion octopus arms touching like fingertips, and each synapse exquisitely controlled by the cells themselves, strengthening or weakening the contact, building webs of interlinked cells that are knowledge, memory, consciousness—a self. A hundred billion neurons. Each in contact with hundreds, thousands, or tens of thousands of others. The contacts flickering with variable strength. Continuously. Unconsciously. Never ceasing. Remembering. Forgetting. Feeling joy. Feeling pain. Thinking. Speaking. Lifting a foot, moving it forward, putting it down again. A hundred trillion flickering synapses.
4:04 PM While wait for Up cycle I was rock head side to side. Shooting “pain” in spine right behind navel. I feel sleepy but I am not. Degas.
Some people would say that bringing the scrutiny of science to bear upon the human soul is the height of presumption. Others would say that the more we learn about what makes our brains tick, the more we stand in awe of the mystery of soul. In recent years, new scanning technologies enable neuroscientists to watch live human brains at work. Active neural regions flicker on the screens of computer monitors as subjects think, speak, recite poems, do math. Continuous awareness, when displayed on the screen of a scanning monitor, can look like a grass fire exploding across a prairie. As I read my father’s journals, I know I am in the presence of continuous awareness, but it’s an awareness that is profoundly unnatural, inward turning, examining in excruciating detail what shouldn’t need examining.
8:28 PM End of energy cycle. Called Mom. Explain next energy cycle to her. Since tomorrow is Christmas Eve Chet will stay with me tonight & Mom tomorrow night.
Perhaps the most exciting brain research today is that of the scientists who study the biochemistry of neurons: How do cells regulate synaptic connections to build new neural webs? One big surprise is just how much of the “thinking” of neurons is done by the dendrites, those hundreds or thousands of spidery arms that connect neurons to one another. DNA in a neuron’s nucleus sends messenger RNA down along the dendrites to active synapses, where they are translated into proteins that regulate the strength of synaptic connections. These tiny protein factories in the dendrites are apparently key to learning, memory and consciousness—the building of a soul. It all sounds very mechanical. My father would have liked the notion of a mechanical soul—all those DNA and RNA molecules doing their own quality control. That’s what he was doing with his data keeping: Getting the background machinery again on autopilot so that “real” life could come to the fore.
On Christmas Day he filled twenty-two pages with notes. Beginning at 2:15 AM when he wakes from sleep (“Penis burns a little. I’ll check it! Looks OK!”). He worries that a wayward movement of his body might cut of the flow in his catheter, and draws a diagram illustrating the problem, this by the light of a tiny penlight suspended from above the bed. At 2:30, another diagram, this time showing a head view of his posture on the bed, his shoulders at an angle of 10 degrees to the horizontal. And so it goes. Entries at 2:35, 2:37, 2:50, 2:53, 2:55, 2:58 (“Hail Mary—deep breath. De-gas! Good one!”), 3:00, 3:10, 3:12. And then, in an almost illegible scrawl, “JUST SAID A LON [sic] PRAYER TO GOD FOR THIS CHRISTMAS AND MY IMPROVEMENT.” The note-making becomes almost as regular as his breathing. 7:32, 7:33, 7:35, 7:37 (“PKs arrive!”).
Christmas morning. Nuns come along the corridors singing carols. Doctor Henning stops by to schedule a blood test. A blessing from Father Johnson. Good people all, giving up their own Christmas mornings for those they serve. He naps. He tries out his new electric razor. Kids and grandkids arrive with presents, mostly photographs, stories, poems. And through it all, he assiduously records the ups and downs of his energy cycle, struggles to keep his head exactly four inches from the top of the bed. A faint flavor of bungling, no doubt, but a faint radiance of hope too.
An amateur with all the discipline of a professional, chasing an elusive “improvement” that has long since moved beyond the realm of the possible. Was his God listening on that Christmas morning? God the ultimate professional, the master tinkerer, who presumably had the power to mend any wayward cell, untangle any knot in the DNA. “The Lord helps those who help themselves,” he had written, which is one of those sad adages that can be interpreted theistically or atheistically. My father was determined to help himself. It was up to the Lord what came next.