This piece was first published in print by the Sycamore Review, winter 2014, as the recipient of the 2013 Wabash Prize for Nonfiction selected by Cheryl Strayed.
(In order to protect identities, various specific details have been altered)
Every year on his birthday, Haresh’s mother brought in two crates of soda that we drank at recess. This was in England so we didn’t call it soda, we called it fizzy drink, and we didn’t call it recess, we called it morning break. Such a treat was not unusual. On my birthday everybody got a bag of prawn flavored corn snacks called Skips. The boy whose mother had a wooden leg brought chocolate biscuit bars called Penguins. The boy whose father drove an Aston Martin brought small cakes with a cream topping called French Fancies. The boy whose mother wore a navy blue tracksuit brought predictably unpopular Granny Smith apples. The difference between Haresh’s birthday and all of the other birthdays was that we were alive and Haresh was dead.
It happened in the year before I came to the school but he would have been in our grade, which was why we got the soda. People said he’d had an asthma attack while running outside in gym class, had lost his breath entirely, then he had died. But we were seven years old, and all my information came from other seven year olds because the teachers never addressed it in class, not even on his birthday. What was important was that we understood he was dead and we should drink our soda solemnly and be thankful.
His mother smiled a lot. He must have died in the wintertime, or been born in the wintertime, because I remember her wearing a heavy coat. We lined up and each collected our can of soda directly from her. She smiled as she handed it over. Then we filed out into the playground and drank the soda quietly and Haresh’s mother stood with Miss Spencer and Mrs. Jervis and I don’t know what they said to each other if they said anything at all but they watched us drink our soda, soda that was impossibly sweet, and when we had all finished the soda we played football as if it were any other day.
In Colorado, I spend a lot of time with people who are dying. That is to say, for the last three and a half years I have met regularly with patients who are terminally ill. I started as a volunteer at a hospital in the Denver area. I went on rounds with the palliative care team. I talked with patients, listened to them, offered to write with them, anything they wanted: letters of gratitude to family, friends, former employers; stories they didn’t want forgotten; apologies; experiences of illness; the unarticulated in whatever form it might take; and, as I have begun to understand, the unarticulatable, that which cannot be articulated, their attempts to verbalize the end of life, to bridge a gap that extends further than language is able, that narrative leaves essentially open.
Things began slowly. Many loved the idea but did not feel ready. I would make appointments and return days later to find patients discharged from the hospital, moved to hospice care, incapacitated or deceased. Sometimes physical symptoms prohibited our conversations: I once sat at the bedside of a young woman who for an hour attempted a message for her loved ones but communicated only a soft wailing.
With persistence, I found ways to better introduce myself, to bring up writing without the sense that it would be a harbinger of death – unsurprisingly many tended to shy away from this finality. I met with patients in the hospital, in inpatient hospice facilities, in their homes. I researched others who had attempted or accomplished similar work. I borrowed from their suggested questions. I found physicians who were interested in the work.
I am writing this now because over the last three years I feel like I should have learned something. I am not sure what that thing might be. I hope that if I keep trying to write about it then maybe it will emerge, quietly, from beneath the page, in the way that if you listen long enough the ear can distinguish a particular instrument from the rest of the orchestra: the moment when you have stopped listening and are purely hearing, when something that has been there all along, that has ridden upon the explicitly sensed, delineates as singular from among the plural. A still, small voice? It sounds so achingly, stomach-churningly profound. And I am backing myself into a corner.
I am writing this because I am holding narrative up to the gap between the end of life and the start of death. I want light to shine through it. I want language to attempt this excursion that is both ephemeral and necessary. When we speak toward death our language must also expire, forming a bridge that will momentarily hold our own weight but nothing more, a path that cannot be retread. There is absence that exists as a lack of presence, and there is absence that annihilates any possibility of presence, past or future. These are the poles between which we must move. The gap between them is the unutterable, the movement from life to death.
Intuitively, it felt very obvious to me that what I was trying to do was helpful to the patients. Occasionally, friends would ask me what I did at the hospital and when I explained they would tell me how they wished their grandmother had had access to something like that, or how this was such important work, or more of the kinds of things that are great to hear but don’t necessarily take you anywhere.
It was the physicians who were able to identify what we needed to do to wrest from this intuition proof of the benefits of narrative at the end of life. We needed a specific measurement tool, a specific narrative intervention, and to normalize the conditions in which these were administered. We found these in the Dignity Therapy intervention, developed by Dr. Harvey Chochinov of Winnipeg and derived from the efforts of Viktor Frankl to prevent the suicide of fellow prisoners at Auschwitz. The patient is led through a series of questions meant to provoke a sense of self while reflecting on the most meaningful events and influences of their lives, communicating deep values with a focus on legacy: an articulation of self in the face of its annihilation.
In all studies preceding our own, the interview was transcribed, edited, and gifted to the patient as a legacy document. The Dignity Tool (an inventory of questions in which the patient ranks items such as anxiety, loneliness, and self-worth on a Likert scale) was administered before and after the narrative intervention. The only differences in our proposed study were slight variations in this assessment tool and – due to issues with literacy among the medically under-served population we would be working with – the introduction of video-recording the interview rather than transcription, the result being a DVD legacy gift rather than a written document. Initial funding was secured and for the last 12 months our team (consisting of a palliative care specialist, an oncologist, a psychiatrist, and myself – a narrative specialist?) has been investigating the value of the intervention for under-served Stage IV cancer patients. My job, as it has always been, is to conduct the interviews with patients.
Across the street from the hospital is the boarded-up former apartment of James Holmes. Just over a year has passed since he walked into a nearby movie theater just after midnight and discharged a variety of legally acquired firearms into those who occupied the tiered stadium seating. Several of the wounded were brought to the Emergency Department where I had spent six months as a volunteer, where months earlier in one of the rooms in which that night the victims were treated, I had first seen a human being move from life into death.
I remember the roughness of that man’s skin. I remember the blueness of his lips. I remember the heft of his limbs as I helped the paramedics zip his body into a white vinyl bag, the overpowering smell of the bag, how the bag did not smell anything like a body. Of course it didn’t. But it was how much it didn’t smell like a body.
The truth is I have not been sleeping well. My wife and I are expecting our first child in three month’s time. For the first fifteen weeks I was convinced that both she and the baby were going to die. Now I am only afraid. For many years my biggest fear was that I would find out something about myself that I could not change and could not stand, something that had always been obvious to others. I wrote myself a note on a scrap of yellow legal paper and taped it to the wall by the side of my bed. ‘Embrace What You Are Afraid Of,’ it said. This was when I lived in Los Angeles and missed Colorado a lot.
Before that, I was afraid of cancer, afraid enough that I stopped smoking cigarettes, then started again when I had forgotten what that fear felt like, not so I could feel it again but because it felt so completely inconceivable when it was not immediately present, the way that even when presented with exact temperatures I cannot imagine how it will feel hotter or colder at the other end of a plane ride and as such always pack the wrong clothes. And so I oscillated between smoking and not smoking, between an intense fear of cancer and a fear of the unknowable self, until I quit smoking for good and read my yellow bedside note so many times that I actually started to believe it and thought sophomoric thoughts about Jean-Paul Sartre and met my wife and then without initially realizing it the object of my fear shifted from my own death to hers. And now that I am to have a son, I am ruled by his death. Perhaps this is how God felt in the days before Bethlehem. Perhaps this is how God has always felt, owned by the hypothetical end of what he has not yet created.
I think what unsettles me most of all is the dissonance of these fears with how easily death is dispensed around me. How easy we think it should be and how difficult it really is. I do not mean only the physicality of the event, I mean the totality of the transition, because I have learned that death is often a process rather than an isolated moment. In the hospital, the physicians use the term ‘actively dying.’ I simultaneously love and am terrified by this in such a way that knowledge will not quell either extreme. Case in point: remembering those days quitting smoking, what is amazing to me now is that back then I didn’t even really know what cancer was.
My first day as a palliative care volunteer, I was late. I had been out of town for several days preceding, and as I tried to leave the house I found that my car had been towed while I was away. The snow was heavy and I walked through it six or seven blocks to the park where the policeman on the telephone had told me my car could be found. When I arrived at the hospital, I paged the doctor and she told me to meet the team in room 1056. This was my first time upstairs. I didn’t know if 1056 was a conference room, the nurse’s station, a break room maybe. I knocked.
I opened the door to seven or eight physicians, nurses, therapists. In a bed at center, flanked by two women was a man, maybe 40 years old. He was emaciated. His arms bent in a strange way, almost back on themselves. A child was crying. She was taken from the room by the older of the two women. The man was making a sound that I did not know well. A kind of shrieking, but muted somehow, not by resignation, as if by surprise. I stood there as the room happened around me. One doctor held the man’s hand. Others were discussing numbers.
Outside, I learned that the issue was one of medication. In recovering from surgery, the line between a dose that would keep the man relatively comfortable and one that would fatally interact with several other medications was extremely slim. The team agreed on a course of treatment, and we moved on down the corridor. As we walked, one of the doctors asked if I was comfortable in this environment. I asked her if it was always like this. Not always, she told me. This man is young. He will fight against it.
When I think of this first day in the hospital, it is the sound that I remember most: a sound that cannot be reproduced. And I think of Tolstoy’s Ivan Ilych and the O his lips made as his wails became mere breath and only the shape of the sound remained: the O, the shape of zero, of nil, of annihilation. It is the sound of the impossibility of moving from life to death. The sound of the horrific surprise, the slow surprise that this impossible movement is necessary, and in this necessity, you will become an observer to yourself, will move from subject to object, because death, as Tolstoy wrote, happens only to the abstract man. To die is to become impossible.
And so I contrast this with a recent plane ride I took from London Heathrow to Denver International, when I stood waiting for the bathroom and looked down the cabin to see the individual video screens on each passenger seat. Tom Cruise crushing an unfortunate’s head against a steel girder. Tarantino’s Django Unchained wallowing in mortality. G.I. Joe. The Taking of Pelham 1-2-3. I had always thought that the most terrifying movies to see on a plane would be Alien and 2001. Now having seen both of these movies, on planes, I will tell you that much more disturbing was this storm of simulated death in the monitors of every seat, 35,000 feet above the Atlantic Ocean, silent and glowing.
It is not any one of these things that stop me sleeping, perhaps a compound of them all, maybe something else entirely. In any case, I walk around Denver. This is how I sleep. I lie in bed and I walk around the city in my head. I walk to the park where my car was towed. I walk all the way down the wide road to the hospital, to the diners, to the bars. I walk to the lake in the center of the largest park and I mingle with the sea birds and I find myself and lose myself and I wake in my own bed at home.
On December 1st 1995, Miramax released Things To Do In Denver When You’re Dead, a noir-like derivative of Tarantino’s successful and then recent Pulp Fiction. The movie starred Andy Garcia, Christopher Walken, Gabrielle Anwar and a slate of others filling roles surrounding the remnants of a life in organized crime and one final job gone wrong. I don’t know exactly when I saw it. Maybe 1996, on VHS, certainly by summer 1997 as by then it had become part of the zeitgeist of finishing high school with my friends. We watched it several times together. We repeated the movie’s slang to each other.
I’m pretty sure that it is not a very good movie. This does not matter at all. I haven’t seen it for 15 years and I may not ever see it again. The reason I am writing about it is a particular coincidence. Retired gangster Jimmy the Saint (Garcia) is pulled back in by a debt to kingpin Walken made necessary by Jimmy’s failing business, ‘Afterlife Advice,’ in which dying customers record video messages for their loved ones. For me in 1997, Denver was completely interchangeable with any other US city. We were in Bristol, England, nearly 5000 miles away, a wholly different continent. All I knew about Denver was John Elway and maybe a mention in On The Road.
As of 2013, I have lived here for the last 7 years, on and off in Colorado for last 11. And only in the last couple of months has it occurred to me that I am doing the same unusual work, in the very same city, as a fictional retired gangster I idolized as a 17 year old.
Before we started videotaping, when I was still writing the stories from interview notes, there was one patient I spent more time with than any other. He was young. Older than me for sure, but still young. I want to call him J.P. because those were not his initials. Sometimes when I am with patients they tell me they have nothing to say, nothing to be proud of, nothing worth remembering. So my job becomes reassuring them that this is not the case, in effect merely allowing them the space to articulate what they had dismissed, to ask the right – often very simple – questions. This was not the case with J.P. He was sure of himself, confident of his accomplishments, which were impressive by anyone’s standards.
He was going to leave his young children without a father. And he wanted them to know him, not just as someone who got sick and died, but as a man, and before that a boy, who had grown up and gone to school and moved across country, across the world. I liked him. We first sat in his living room, then progressed to meeting at his bedside at home, then at the hospice. The last day at his house he was out of bed, as I had not seen him for weeks. He introduced me to his family. He gave me a bottle of wine to say thank you. I wasn’t sure if I could accept it. I did. But I didn’t want to drink it.
That day I left his house and thought that was it. I sat in the car for fifteen minutes before I drove home. I turned off the radio. I put the bottle in the cabinet. I half hid it. I told my wife that we would know the right time to drink it. I don’t know what I really meant.
But I did see him again. In the hospice, visiting another patient. He didn’t have long: surrounded by family and his skin jaundiced. I wasn’t really prepared for it, although I’m not sure what it is I would have done to prepare. His speech was slurred and he told me he was holding out until his son’s birthday, two weeks away, which he did. Then he died the next day and I did not drink the wine.
Sometimes I would drive out of my way so I would pass his house when heading across town. Months passed. I met several other patients. Sometimes when I was sitting with them I found myself getting bored and I hated myself for it. I instituted a maximum of two visits with each patient. I finished my doctoral dissertation. I defended my dissertation and that night we had a party, a real drinker’s party. I don’t know when it happened or who did it but the wine got opened. It was undrinkable. The cork had disintegrated into the bottle and it tasted awful. I poured it away. Nobody could drink it so I poured it away.
At 12th and Grant, the fourth floor windows are boarded where last week a man had been shooting at the sidewalk.
All night I walk along the creek path, to the freeway bridge and back and back again. The glass is broken in the window frames. It has not been removed. Every morning, I wake in my own bed and from the window I see the buildings, the tallest buildings with perfect clarity.
Firearms are discharged in increments, all over the city. I stick pins into a map on my wall. I am attentive, the soles of both my feet are flat on the ground.
I know the creek path so well. I know which people stay under which bridges. Under the Colfax bridge, a man has stacked the larger rocks into a wall to surround where he will sleep. He has a built a kind of tomb. I call out to him in the night but he does not reply.
Lately, I have seen rodents on the pavement, blood congealed around their dead bodies, as if they had been intentionally beaten. I cradle their tiny bones. I dig graves in the dirt with my hands. I lay them down.
In the story, the townspeople dig up their mothers and fathers, take them from their boxes and hoist them skyward. They dance with them on their shoulders, wrap them in new linens then return them to the earth.
Every morning, I wake in my own bed. There is dirt beneath my fingernails. There are the buildings, the perfect buildings in the city and the mountains behind. And the haze from the fires. And the cars on the interstate. And the blood beneath my skin. And the blood in my heart. And the blood on my hands.
Whether our study can prove we are helping people, I do not know. I like to think of our work not as testing the efficacy of a particular intervention but trying to figure out if and how telling stories can save your life. And I don’t mean that telling stories can keep you alive. I mean: save your life. There’s Joan Didion’s famous quote, “we tell ourselves stories in order to live.” It has become very clear to me over the past few years that we also tell ourselves stories in order to die.
I think this is what I am most interested in. The utterance that makes death possible, that in the opened possibility of death will save you.
Narrative is the movement from one known moment toward the unknown. A leap. Human engagement consists of making these leaps. Human knowledge is those leaps completed. Science is the collection of stories we have devised and tested to explain the world around us. Minus the rigor of reason and with the addition of faith, we have religion. Language exists in the gap between two knowns, or between a known and an unknown: it exists in the abyss. Beneath each word is nothingness, the nothingness that has annihilated the possibility of presence. What then is the story that bridges life and death, the unbridgeable? How will we speak the word that brings us to death, and in so doing, to life itself? The song in which the self solidifies, becomes object, that can be wrought in language, can be sung in word and deed, can be wailed softly in a hospital room with no articulation other than the melody of its own private expression?
There are 12 questions on the interview schedule. Sometimes all it takes is the first one “Tell me a little about yourself,” and we’re away for the next hour and I don’t have to say anything else. The best thing anyone has told me came from an elderly woman: when Nixon was elected President in 1968, she took it upon herself to quit smoking as penance for the entire voting public. Just like in the rest of your life there are people you immediately connect with and people that you have to work with. When I ask people how they would like to be remembered, it is amazing – and edifying – how many answer with ‘dancing.’
Because the interview is recorded and edited so only the patient is heard, I can’t murmur approval or sympathy as they are talking. Instead, I have acquired what I believe to be a very expressive nod. We set it up so the patients talk to me at a slight angle to the lens of the camera. At some point during the interview, for particular emphasis, nearly everyone turns away from me and speaks directly into the lens. I have found no symmetry in when these moments occur. The hardest people to talk to are the ones who cannot believe they will die. The most rewarding things are seeing people soften as you talk to them, the utter privilege of being this witness, the way they smile when the interview is over and you tell them they were great.
We sit down to breakfast by the window. At the table beside, a man has ordered the breakfast tacos, with chorizo, and handmade tortillas. He is telling his friend, in an outdoor voice, the tortillas are so authentic here. Mmm, he says. Authentic tortillas.
The friend nods. We order. The man’s tacos arrive. Then another man arrives, on the other side of the window, the street side. His clothes are filthy. He is drooling. His dark beard is matted together into a twisted front dreadlock. His saliva mixes with the dirt on his skin and forms a kind of mud. He presses his face to the window right where the man with the tacos is yet to take a bite. They are less than two feet from each other, separated only by glass. A cord of muddy saliva moves down the window pane. Then the man on the outside starts bawling. A theatrical sobbing that seems clearly affected. It’s loud enough to hear through the glass and several diners have turned toward him. Then the sobbing stops. He throws his head back, and launches what could not quite be called a sneeze onto the restaurant window. A medley of blood, phlegm, and other indeterminate fluids begin their journey down the window, right next to the man with the authentic tortillas.
This is when he alerts the server, and she sends someone outside to remove the man at the window. And he leaves and as he leaves he resumes his sobbing. But what he has left on the window remains. The man does not touch his tacos despite the authentic tortillas but asks that they be packed into a box as he settles the bill, then as he leaves I see him toss the box into a trashcan at the corner.
That night, I see the man at the window on the creek path. He is standing in the creek barefoot with his pants rolled up to the knee. He is sobbing again. Louder than before. And instead of tears there are streams of watery blood streaking his cheeks, flecking his beard. I watch him from the path with the rodents. He lies down on the creek bed and lets the water carry his body.
Every morning, I wake in my own bed. There is blood beneath my fingernails. I place a pin in the map where I imagine his body. I place a pin in the map where he lay down in the creek. I place a pin in the map to mark the restaurant, the restaurant with the man at the window, the restaurant with authentic tortillas.
The ideal of Things To Do In Denver is an afterlife in which you meet your earthly companions on a yacht, floating in a place where the ocean is clear and the sky is always blue, and you fish and sip margaritas and there is no time and there is no pain. Boat drinks.
I have found a definite distinction between those who believe that in death they will be delivered to a better place, and those who believe no such thing. There is very little middle ground, no space for a lack of certainty.
I tell other writers that I never write about this, but I have, several times. And I’m doing it again now. It’s not as if I describe the things I see, as I am doing to some extent here, it’s that things seep into writing I believe to be unrelated: the strange gesture the man opposite me makes when he knows he is about to break down; the particular speech patterns that arise to communicate forgiveness; the quiet triumph in articulation. There was the grandfather who knew he was on his way to heaven, the young woman with huge eyes who was sure she was not. I once talked about the Broncos with an elderly woman for 45 minutes. I once figured out with an even older man that his youngest daughter was born in the same hospital in England that I was.
All of these people are likely dead now. I don’t know where they are. Their bodies may have been buried, or burnt, possibly surrendered to the ocean. I do not know what else there is. A spirit? A soul? Something that floats on a yacht among the Florida Keys reeling in marlins and smoking cigars? Something that persists beyond these skins of grime? I am still a young man, only 34 years old but I have met with several patients younger than me. I do not think of them that often. But they are there. And they are here now. On this page, in the space between us, the dead and the dying, with names I have to change if I want to write them, with the things they believed and the things they left behind. Like me. Because there is a choice I’ve had to make, between dwelling on each of these lives that I have intimate access to for an hour or so, or being solemn and thankful, finishing the soda, and running off to play football as if it were any other day.
Richard Froude has written three books: FABRIC, The Passenger, and Tarnished Mirrors. He teaches classes at Lighthouse Writers Workshop, in their outreach programs with the Alzheimer’s Association and the Denver School of the Arts, and at the Naropa Summer Writing Program. In May, he will graduate from medical school.