“Something that can be trusted”

Author Carolyn Zaikowski on the healing potential of death work

[Carolyn and I spoke via email in January & February 2020]

Evelyn Hampton: People I’ve talked to about Death School are curious about the project and about death—at least, many seem interested in why I’m interested in death. Yet even when people are kind of curious about death, most don’t look into it any further—I think we are usually afraid to, and/or superstitious, like “If I think about death, that will bring it closer” or “that will mean I’m weird” etc. So when I saw your post on Instagram about your hospice volunteer work (and I think it mentioned you’re starting death doula training, too), it got my attention, because it suggests you’re exploring and understanding death in ways most of us don’t. What led you to volunteer at the hospice? Have you always been curious about death and working with the dying?

Carolyn Zaikowski: Part of me has always been interested in things society and families won’t talk about. Like death and darkness. Since I was a kid, I’ve intuited that scary, difficult things are legitimate pieces of reality. We need to shake hands with them, invite them in, otherwise they’re going to subconsciously terrorize us our whole lives. Usually the things that haunt us, the things we stuff, are simply asking to be witnessed, held, and consciously integrated.

I joke that people have been telling me I’m too sensitive and intense since I was five minutes old. But getting older, I’ve realized being able to witness darkness isn’t freakish—it’s a strength. Even people in my life who’ve said I’m too sensitive, a dark horse…guess who they call in the middle of the night when they’re having a crisis? It’s an open secret that society would fall apart without people who can hold this role. Most of society balks at us “oversensitive souls”, yet we’re who they come to for therapy, for spiritual counseling, for times when a safe space to be vulnerable is needed. We’ll go directly into the middle of others’ pain to witness and troubleshoot. After years of being made to feel that this part of myself is a pathology, I’m finally embracing, loving, and consciously channeling it.

I’m guessing you can relate to some of this? Your Death School project is so cool!

In my town growing up, there were several young people who tragically died; I was also thrown into pondering death by way of those traumas. As a teen, I volunteered on the suicide hotline, and thought about volunteering in hospice. A couple years ago, I witnessed my ex-mother-in-law go through her dying process in hospice. It was profound and inspiring. That was when I finally signed up. I also joined a program called No One Dies Alone, where people sit vigil with actively dying folks (meaning they have three days max to live) who have no one to be with them. Now I’m about to be a certified death doula.

EH: I love hearing about how childhood traits and proclivities stay with us and shape our lives — like your sensitivity and ability to witness becoming what makes you so well equipped for dark nights of the soul. That thing about how our wounds become our strengths…

In my experience, the feelings that are the most difficult to be with are also the ones that make connection with others so difficult — we feel so alone in our sadness, grief, fear, anxiety — yet we all feel these things! All the time, people are feeling an amazing spectrum of grief, sadness, fear, etc. If only we could talk about it. That’s one of the reasons why I’ve felt motivated to open up conversations about death. It’s something every human has in common. There’s so much knowledge about pain and dark places to be shared.

Probably many people who are reading this have never visited a hospice and don’t know what that environment is like (me included!). What is it like, in your experience? How is the atmosphere different around the dying?

CZ: Amazing, right? Death and birth are literally the only two things that happen to all of us, and almost every human will experience huge loss, whether the death of a person, pet, relationship, a natural disaster…yet we cannot seem to get it together with talking about it, at least in most Western cultures. Ernest Becker wrote a groundbreaking book The Denial of Death. He posits that the thing most unique to humans is that we are aware we are going to die. That this is not only the our most primal fear and most subconscious obsession, but that it’s responsible for basically everything we associate with civilization…art, war, symbolic language, social structures, and so on. Some modern psychologists have taken it to build another theory called “terror management theory” where the premise is that our fear of death drives us to war and oppressive social systems.

The hospice I volunteer for mainly takes place in people’s homes. It’s said hospice isn’t a location, it’s a philosophy. Being in someone’s home can carry so many different dynamics based on family relationships, economic class, culture, etc. In my program, anyway, very rarely will a volunteer witness the death; rather, it’s a holding of space for someone over a few months of transition. Sometimes those folks are alert; sometimes they are not at all, and it’s the family who needs support or respite.

In the year I’ve been with No One Dies Alone, I’ve sat vigil for ten or so actively dying people, and have witnessed three actual deaths. I can only speak for myself: There is a level of presence, concentration, sacredness, and holding space that I can only think to compare to how I feel on a meditation retreat. Everything else but the moment fades into the background. Time gets concentrated in an unusual way. I usually play relaxing music for people, as it’s thought this can help and that hearing is the last sense to go. One active death process I witnessed happened quite quickly (within 15 minutes), with the person totally alert in the hours before. This person had come to an incredible acceptance of their death and was full of some of the biggest joy and love I’ve ever witnessed. They were speaking in travel metaphors, a very common phenomenon. As is the fact that dying people will actually predict when they’re going to die, which this person also did. It was like they had one foot in the other world and that world was the most beautiful possible thing to them.

That’s not to say there aren’t people who feel terror at the end; I just haven’t yet witnessed that personally. I will eventually. And god knows how I’ll react to my own death process, you just can’t know.

Another common twofold phenomenon is that a) people will wait till someone gets there to die; one death I witnessed, the person died literally the minute I got there. The actual minute. Or, b) they’ll wait right till people leave because they may not want to die in front of someone, or the loved one is accidentally making them stay attached to this world. It sounds woo-woo, but this stuff is absolutely real with the dying. 

At least for people whose deaths are predictable, I’ve come to believe there is an orderliness to death, a basic way it happens. In the weirdest way, I’ve come to feel that death is something that can be trusted. It’s so sacred yet so normal. Just like birth.

EH: “Death is something that can be trusted” — this is so lovely, and so against the grain of how most of us think about death (as something unpredictable/unknown that will happen to us). What I hear in your descriptions of the dying — which are fascinating to me — is a message of dying as a being with: in your death work you have been with the dying, but also, our own death is something we can be with (at least, in the case of predictable (vs. sudden) deaths). I’m thinking of how meditation teaches people to be with their bodies no matter what is happening — noticing sensations, even very difficult and uncomfortable ones, and breath especially. I know we’re both mediators, so I’m curious to hear how you think your meditation practice is informing your death work, and vice versa.

CZ: Yup—tons of connections between potential acceptance of death and certain Buddhist meditation practices that teach us to notice sensations, emotions, and thoughts in the body/mind. Developing even the slightest space with which to see them a bit more clearly. I partly came to death work through Buddhism, with the mindfulness aspects you mentioned. But also Buddhism’s unusual relationship to exploring the nature of the self. These practices are supposed to ultimately lead to seeing the true nature of reality, which is that nothing has an inherent core self, everything is made up of things which are not that thing. Carolyn and Evelyn are made entirely of non-Carolyn and non-Evelyn pieces that are constantly arising and falling right down to our atoms. Tiny deaths and births every moment. Waves in an ocean. I don’t think I can necessarily explain this in an intellectual way, I’ve just started to see it in my own experience because of meditation. What is your experience with these ideas/practices? I suspect there are people who come to it naturally on their death bed, but probably most of us should do these explorations when we’re young and healthy.

Victor Frankl said something amazing: “Between stimulus and response, there is a space. In that space is our power to choose our response. In our response lies growth and our freedom.”

EH: Your description of reality as a kind of constant rising and falling of parts, like waves in an ocean, gets at what my experience has been (which, you’re right, it’s really difficult to describe this, I think because it happens outside of language and concepts). I’ve experienced this through meditation. I’ve also experienced this, in a profound and life-changing and life-enhancing way, through guided psychedelic experiences.

I agree that practicing feeling/knowing/sensing the “no self” nature of experience in an ongoing way, when we’re healthy, is important and fruitful. Doing this doesn’t just help us gain a deeper understanding of dying—it’s also a way to let go of the tension and stress we accumulate through all we do each day to maintain our identities. Have you found this, too? Identities are stressful because they’re necessary, but they’re not real. After a 12- or 16- or 18-hour day of “being [insert your name here],” taking twenty minutes to let that construct dissolve is liberating and relaxing. It’s a way of seeing a construct, a facade, an empty thing, for what it is. And it creates that space Frankl is talking about.

So, meditation practice can be a preparation for dying. Has death work led you to think about your own death in other ways? Has it led you to make any preparations, like an advance directive?

CZ: Even though I’m “only” 37, I have advance directive medical documents and a will (I live in Massachusetts, which is one of a couple states where you can write a will without needing a lawyer, provided there aren’t huge issues around property, kids, etc.) It’s true that because of friends I’ve had who died young and suddenly, I might be especially sensitized to the idea that you seriously, really, truly, for real do not know when you’re gonna go. In my will, I specified a lot, like how my memorial service should be, where special items like my lava rock from Iceland should go, etc. It’s taught in hospice/doula training that it’s quite foolhardy not to do this kind of planning when you’re young. If you’re not married to your partner or haven’t otherwise done this planning, and you don’t get along with your family, guess who’s going to get control of your medical care? And perhaps your savings, house, pets? People don’t realize how important it is to legally specify what will happen to your pets. Hell, I even have a specific friend who’s agreed that, if I die before her, she’s going to rush to my apartment to throw away all my journals and embarrassing stuff so no one else finds it! 

EH: How do you think doing death work is affecting your writing?

CZ: Whoa, gosh I’ve never thought about this. The answer’s probably something about how at least some of my writing and my interest in death come from a similar vague inner wellspring, and always have. Stuff like wanting to heal and witness myself and others (whether or not I’m successful is another story.) I’ve also thought about Becker’s theory, which I mentioned, about how probably, like most humans, I wish to deny death and be immortal in some way. Art is a way of thinking we can make ourselves live on.

Carolyn Zaikowski is the author of the hybrid novels In a Dream, I Dance by Myself, and I Collapse (Civil Coping Mechanisms, 2016) and A Child Is Being Killed (Aqueous Books, 2013). Her fiction, poetry, essays, and hybrid work have appeared widely, in such publications as The Washington Post, West Branch, Denver Quarterly, The Rumpus, PANK, DIAGRAM, and Everyday Feminism. She holds an MFA from Naropa University’s Jack Kerouac School of Disembodied Poetics and is currently an English professor. Find her at www.carolynzaikowski.com

Death Cleaning

Right now I’m house-sitting. I moved out of my apartment, put most of my things in storage, traveled to the other side of the country and entered a house FILLED with someone else’s beloved objects — paintings on the walls, books on shelves, candle holders on tables, tables on tables, photographs on stacks of books on the floor, shelves of dishes and photographs, dishes hanging on the walls, chairs on chairs, shelves of paintings, paintings on stacks of books, tables of broken and uncharged devices. The arranging of objects that is practiced here feels like art.

While I am here the house is being cleaned. The path through the profusion was already narrow, and now it is narrower. When they’re someone else’s belongings, belongings are undesirable. When they’re mine, I often don’t even notice them, their necessity seeming as obvious as air.

A friend sent me an article about Swedish death cleaning (“dostadning” in Swedish) a couple of weeks ago; I read it while sitting in a corner I’ve cleared for myself in this house. The idea is to steadily declutter, beginning maybe in your fifties, so that by the time you’re too old to move your body, you don’t have to also deal with moving so many objects. And you save other people having to deal with your clutter.

I liked reading this article in this house. I’m in pretty good shape, yet I’m overwhelmed by the objects here. I have to move chairs around to be able to get through a room. I bump into things; my legs are bruised. This article reminds me that things that are merely inconvenient to me now could be impassable in 30 years.

Since I moved out of my apartment, I don’t miss my things. I only missed them when I was living with them and contemplating leaving. What I consider necessary has shrunk from the size of an apartment to the size of two suitcases, plus all the data I store in a cloud. Maybe one benefit of having been born when I was born is that when I am older, I’ll likely have more digital possessions than “real” ones. But there is such a thing as digital clutter, too, and I don’t want someone else to have to deal with mine. So, now that I own few material objects, I’m thinking about my digital ones, and trying to declutter them. It’s difficult — documents I haven’t opened in years seem necessary, as if they help keep me warm at night. The most I’ve been able to accomplish so far is sorting things into folders — making piles, basically.

Doing this, I’m also thinking about something else I read recently — Ursula Le Guin writing about the blurry boundary between nonfiction and fiction. She writes, “Excellence in nonfiction lies in the writer’s skills in observing, organising, narrating, and interpreting facts—skills entirely dependent on imagination, used not to invent, but to connect and illuminate observation” (“Fact And/Or/Plus Fiction”). I’d rather have the ability to arrange things well than the things themselves. And I’d rather deal with what’s already on hand than get new things. The arranging is alive, for as long as my body is, and it travels with me; the things are alive only through my arranging them. I can exercise this capacity wherever I am, with whatever happens to be around.

The difficult part is stepping back from my own belongings, material and digital, and seeing them in the same way as “whatever happens to be around.”


P.S. Friends I’ve been meeting up with while traveling have been asking me about Death School. What is happening with Death School? It’s nice to know they haven’t forgotten about me, though I wish I had more to tell them. What I’ve been saying: I’ve been talking with a couple of death doulas, and I’m going to talk with a chaplain in Providence. I’m hoping to take a death doula training in the not-distant future, and to use what I learn in this training to organize a Death School session.

This is all true. I’ll keep you posted.

The best places to die

Since I started thinking about a death concierge service, I’ve been wondering where are the best places to die. Are they good places to live, too?

The Economist’s 2015 Quality of Death Index says that the UK has the best quality of death; Australia and New Zealand were second and third. (The US and Canada were 9th and 11th.)

In the top-scoring countries (which are also some of the richest countries, with high public spending on health care), palliative care is well integrated with medical care, and the quality of care is high. If you’re in pain and need opioid painkillers, you can get them pretty easily. People know about palliative care and doctors and other medical workers get a lot of training.

Besides good hospitals and hospices, though, maybe there are some other things to consider when choosing a place to die. If you don’t care about the hospice nurse you might want while you are dying, maybe you go for grandiosity and live where you can have the most spectacular funeral.

I can’t stop looking at the picture of cliff graves in this post about funerals in Tana Toraja, a regency of Indonesia. (Scroll down a little and you’ll see what I mean.)

Maybe you want to be buried at home, wherever home is. If it’s in L.A., get in touch with Caitlin Doughty. She is a mortician who runs Undertaking LA, a “progressive funeral home in Los Angeles, California.” She helps people be more involved in the preparation and burial or cremation of their dead loved one’s body. One of the services she offers is “Green/Natural Burial,” which includes a plot in Joshua Tree Memorial Park.

I have lived in cities where I have thought, I would not want to be buried here. When I lived in Eureka, I would walk past a cemetery that was especially unappealing — it seemed mostly empty and forgotten. There was one nice thing about it, though — because the grass was rarely mowed, the dandelions could grow to be very tall, and then there would be, along a busy road with a broken sidewalk, an expanse of waving yellow with a few headstones bobbing on it.

While I was visiting a friend in Pittsburgh recently, I found out that she lives right by the cemetery where Andy Warhol is buried, so I walked there one morning. His grave is in a cemetery on a hill overlooking a neighborhood called Bethel Park, where the brick houses were identical and the air smelled like gravy. A little higher on the hill his parents are buried, and some other people from his family, too. He died in Manhattan, but his brothers brought him back here, the city where he grew up, by the church his parents went to. There’s something comforting to me about the shape of it. We each might have certain inescapable places.

Bernard Crettaz, a Swiss academic who started Death Cafe, lives in Anniviers, a where he grew up and where is his parents are now buried. He tells the story of how one day when he was a boy, his parents took him down to the cellar of their house and showed him the wine and cheese they were saving for their funerals. It was an old tradition in the valley around Anniviers to do this. He grew up seeing this wine and cheese and knowing what they were for.

One of Crettaz’s childhood friends, André, has a cellar in a cave where he is saving wine and cheese for his own funeral. Occasionally he and his family go into the cellar and, in a ritual, sample the wine and cheese. Once time when André’s seven-year-old grandson came to the cave, ‘he pointed up to where the wheels of cheese were kept on a top shelf, to protect them from mice. “Here is the cheese for my death,” he said, proudly.’

Since reading this, I have wondered: if I had a cellar in a cave where I could keep something for my funeral, what would I keep there? Who would I bring with me when I went to visit it?

Summer break

I’ve been slowly making plans for Death School and also taking a break from social media. The quiet has been nice. I mean, it hasn’t actually been quiet — there are creatures living all around me, making all sorts of noises, plus devices and appliances and weather. There are all the thoughts — sometimes they seem very noisy, sometimes so quiet I’m not sure they’re there. There are jobs and other obligations, and travel — I spent the last week of June in mountains in Washington, then came home for a night and left the next morning for a few days in bigger mountains in California. I’m home now but leaving soon to visit a good friend who lives far away. It hasn’t really been quiet at all, but knowing that I don’t have to be commenting online on what’s happening creates a kind of calm, sometimes.

One thing I’m thinking about for Death School is a death concierge service. People could use the service to find out about nearby death-related resources. This would be a necessarily local (to a specific city) service; “How to Die in Eugene, Oregon” (or anyplace). I think most people don’t really know what’s available around them to help them plan for and think about dying. I like the idea of amassing a list of these resources for different cities and helping people find the ones that seem most useful for their ideas about their own lives and deaths. This is something I’d like to work on during the rest of the summer and fall.

I’m also planning a trip to Providence to host a Death School gathering in late fall or early winter.

I know I’m moving very slowly with Death School, and I’m sometimes self-conscious about how slowly I’m going. I want to make a lot of things happen right away, but I also want Death School to be something I can sustain for the rest of my life. I don’t want to rush it — Death School or my life.


I read something yesterday that I want to post here. Although it’s in the context of advice to young writers, for me it’s a good reminder for those times when I feel like I’m not accomplishing enough, or like work is what’s creating my life, instead of seeing how it’s the other way around.

Onward. Once you’ve truly begun, slow down. The difference between publishing two good books and forty mediocre books is terribly large. Don’t expend energy in writing and publishing that would be better used in your family or community. Become tempered by life. Make compromises for love. Provide a service to the world. These experiences form the adult mind. Without them both you and your work will remain juvenile.

Learning what it means to be a human being

I think anyone who has tried to stick with a practice or habit for a length of time knows that it is not always easy or comforting. When I was a teenager and would run long distances, there would be runs and races that felt incredibly difficult and uncomfortable, and others that were easy. There would be an easy mile and then a difficult mile and then an easy mile, etc. For me it’s also been that way with writing and meditating. It’s easy sometimes and it’s incredibly hard sometimes, and I don’t know why.

Sometimes the practices that I tell myself are important to me seem to bring me more discomfort than they do comfort. But I also know from experience that things always change; if I just keep doing them along with the discomfort, I end up gaining a kind of intangible strength that I would not have gained had I given up or tried to couch the experience in some way to make it easier.

It is going to be the same for Death School — it is not going to try to make human experience less disturbing or more palatable or easier or different than it is, because Death School is about learning what it means to be a human being.

Think of how varied your experience is during a single day — there are ups and downs, good news and bad news, all kinds of things happen that you didn’t prepare for or expect. I think it is like that with any practice, including the practice of learning how to learn about and understand our own deaths.  It’s all over the place, and it’s unclear what we really gain by trying to make it all easy, all the time.

With Death School I am interested in doing something completely different from our current approaches to death, which include art therapy, hospice, grief counseling. Those practices are included in Death School as areas of study. For instance, a Death School course would ask, Why have we chosen these practices as our most relevant / prevalent ones for understanding death? What is the history of these practices? How are they shaped by our culture? How do they help shape our culture? How does our economy interact with these practices? What current assumptions, fears, biases do these practices reflect or uphold?

By asking these questions, I think that anyone who considers theirself a student of Death School can better understand their own personal values in relation to those of their culture. This understanding can help someone to have a unique vision of how their own life fits within a larger culture. Having a unique vision of your own life includes having a unique vision of your own death. You don’t have to feel any particular way about death, despite what the dominant culture says is the “right” way. The end of your life doesn’t have to look like the end of other people’s’ lives. It can be something new.

I’m not interested in trying to make what might seem like a difficult topic easier, but I am also not interested in deliberately disturbing anybody. Rather, part of a Death School course includes noticing how honest, open discussions of death make us feel and react. If we notice that we react by feeling disturbed and wanting to run away, then we have learned something valuable about ourselves.

Of course, like with any other practice, there is a time for backing off, taking a break, resting, healing, giving up for now. Learning how to relate to death in a new way is not easy — it can mean feeling very vulnerable, and that means having a lot of gentleness and kindness for yourself and for other people.

But feeling vulnerable or uncomfortable does not necessarily mean that you are doing something wrong. In fact it can mean that you are doing the very best thing for yourself as a human being who wants to learn what it means to be a human being.

Times when I have met my limit and gently continued to explore it have been the best and also the most difficult times of my life. Right now, while I am telling people about Death School and trying to figure out what it is and how it will fit with all of the other things I want to do and value, and sometimes reacting strongly to how other people are reacting to Death School, I meet my limit often, sometimes daily. Doing this is teaching me a mode of gentleness with myself that is becoming my favorite refuge. When I think of how difficult the end of my life might be, and I remind myself that I have resources of gentleness to draw on when I am in pain, I feel a great relief.

But this is all just my experience. I would like to learn about other peoples’ experiences around death and discomfort.

Death School: what it is and what it isn’t

Telling people about Death School has been helping me to better understand what I’d like Death School to be. It has also shown me how difficult it is to get past the limits of our ideas and vocabulary for death. Some people hear about Death School and think it must be about grief and coping with loss; others think it is an extension of hospice; others think of art therapy. Some people hear about it and try not to give it a second thought.

While Death School is interested in all of these, I’ll call them modalities, for understanding death, Death School is not about any one in particular. Instead, I think of Death School as a place where we can collect and understand all of the ways people in our culture and in other cultures have come up with for understanding death, AND Death School can be a place where people come up with new ways, their own ways, for understanding death.

I deliberately want to leave some ambiguity in Death School’s first event, which I’m currently writing. I’d like there to be a conversation about how our tools and resources for understanding death are limited by the time and place (the context) in which we are living. I’d like to talk about how people go about creating new contexts – for understanding death and also just in general. How do we create a new time, a new place, for new understanding to happen?

That, for now, is what Death School is about.

The “cancer scare” & how it is (and could be) shaping our culture

I’m interested in the cultural role of the “cancer scare” — how it affects the courses of human lives, how those lives affect other lives, and how all this shapes our institutions. For instance, why does it seem necessary to me to put “cancer scare” in scare quotes? It’s a real life event, but it’s still held it at a distance, as if we’re wary of whether it’s real.

I have had two cancer scares, one when I was 14 (when a chest x-ray revealed a mass around my heart that looked like lymphoma) and one last year. The most recent one is why I started Death School. I was sitting on the porch, recovering from surgery to remove two mysterious “masses” from my abdomen, waiting to hear the biopsy results, and I joked to my partner that what college students really need to learn about is how to die — a course in different cultures’ attitudes toward death, ways individuals have conceptualized death and its role in their lives, and some kind of project to help students better understand their own concept of death. He didn’t think such a thing had to be a joke, and we started talking more seriously about how a death school would look.

Preparing for surgery, I filled out an advance directive. Doing this effected a big shift in me. To complete the forms for the hospital, I had to think realistically about my own dying process and death. Under what circumstances would I want to be given food intravenously? For how long would I want to stay on life support, if at all, if my body showed no signs of being able to support its own functions? Who would make the decision to remove life support? Would I want anyone affiliated with any religion present at my hospital bedside when I began dying? Without knowing how I would answer these questions, doctors (people I don’t know and who don’t know me) would have to do what they thought best for me.

I wanted to have some say in how my own end could look, but for weeks I was afraid to fill out the form. I found it online and then closed the window. A few days later I went back to the site, looked at the link to download the form, and closed the window. This went on and on. I did not like the bureaucratic look of the form one bit, and the fact that it was asking me questions about my own death made it seem more dreadful and impossible to ever approach.

Eventually I was able to print the form, to put it in a pile on my desk, and to ignore it. Then one afternoon when I happened to be feeling calm and brave, I started filling it out, and that was when something shifted for me — it’s hard to articulate, but it had to do with understanding that death really is inevitable, and that it really does feel better to engage with the truth about death. Then, it’s much easier to think about death in a calm way. When I’m calm, I can see that death is something I share with all beings alive right now.

Anyway, I filled out the form and had my partner and two road-tripping friends who were staying with me sign it as the legal witnesses. It felt good to share this weird bureaucracy-driven experience of death planning with some of the people who are closest to me. Planning for my own death made me feel powerful in a way I had never felt before. The feeling of power didn’t have to do with a sense of control — I knew, given all the possible scenarios of my exploratory surgery, how little I could control about the process. Rather than a sense of control, I had a sense of giving up trying to control something I never had control over to begin with. I could reclaim that energy and use it to draw close to me the people and ideas and memories that are important to me, and that sustain my life in their own ways.

(This — drawing together people and ideas and memories — is what is motivating Death School right now. It feels a little impossible to be undertaking such a thing — I have lots of doubts about myself and about how all of this is going to work — but I am trying to see this as a life’s work, not a quick project, of staying engaged with what matters to me and of learning about what matters to all of you.)

I got a report of “benign” from the lab on my biopsy. This was a cancer scare, not cancer. We hear a lot about cancer and its effects on individuals and policies, and of course there are good reasons for that — cancer is crazy and devastating and we don’t really understand how it works. In addition to the attention we give to cancer, I wonder what would happen if we started to talk more about what the scares mean, and what they could mean. They could mean an open dialogue about the ways individuals try to face death in a culture obsessed with youth and health. They could mean people coming together rather than individuals trying to be silently strong. They could mean a chance to step out of your life to look at what is happening and where it all seems to be going, and to decide if you want to keep going that way. A scare could be a reason to change.

Making & Dying

Fear and dread are difficult to get close to — their nature is to push away, repel, send you running in the other direction. I know that during times when I’m fearing or dreading something in the future, creating something, even a meal, can put a familiar texture on what I am feeling, letting me get a grip on it, examine it, understand it, and finally let it go.

A lot of the time we need to touch the things that frighten us through our favorite medium — wearing painting or language or comics or music like a protective glove — in order to get close enough to understand them. Making something as a way of approaching and understanding death — I’m not an art historian, and I’m not an archaeologist either, but isn’t this what humans have always been doing?

A few projects I came across lately reminded me of this basic human impulse to create: “thoughts in passing,” “Flat Death,” and various death apps, which let you collect and pass along your digital identity, so loved ones get all of your usernames and passwords without having to sift through your desk drawers.

To make “thoughts in passing,” Claudia Biçen met with people who were dying in hospice care to talk with them about their lives — “their refections, regrets and lessons.” These interviews, along with photographs of the patients, were the basis for pencil portraits of nine of the patients.

“If I learned any one lesson from my conversations,”Biçen reflects, “it is that meaning does not come from consumption, but creation. The meaningful life is one that gives more than it takes.”

A different project, Flat Death, looks at death through the lens of photography and photographic images. Photography is an important tool in forensics; we also take photographs of our recently dead, embalmed loved ones, to help us remember them — or maybe it’s an image of them that we want to remember?

Then there are death apps. Death apps “help people give their loved ones unconditional control of all of their online accounts by digitally transmitting their account passwords to them, post-mortem. Online banking, digital newspaper subscription and online shopping accounts are all scooped up by death apps…”. One app, Afternote, lets you make a photomontage of your life. And there are sites like Gyst, where you can do all of your end-of-life planning, completing and storing your will, advanced directive, and other documents telling others how you want to die, and how you want to be remembered after you die.

(Personally I’m wary of death apps — I think they feed our already unreasonable expectation that we should be able to manage every bit of data our existence generates. If the way we approach death reflects our fears about life, then these apps say a lot about our current neurosis for “having it all together” (and also collect personal data in the servers of companies we don’t know whether we can trust). But maybe you just want to leave something behind, and no way in particular to do that has presented itself yet — then maybe there is something to be had from one of these apps.)

Making, organizing, and dying — each can be a mode of remembering, remembering others and ourselves.

Death isn’t a rest, cancer isn’t a battle

Because I’m in the midst of organizing Death School — I’m reading a lot by people who work in the death field, and thinking a lot about how to talk to people about death — I’ve been sensitive to the language people have been using to talk about David Bowie’s death. There’s the old “died after a courageous battle with cancer” trope; also, “Rest in peace.”

I think the language we use to talk about death — or anything at all — directly affects how clearly or how vaguely we understand the concept the language is pointing to. If I want to understand something more clearly (and I want to understand death more clearly), I can start by looking closely at how I’m talking about it, whether I’m really talking about it at all. Otherwise, language becomes a placeholder for understanding, a spot of gloss that lets us slide across death without touching its difficulties.

In the rest of this post, I’m going to look more closely at these two tropes, the one that posits death as a “rest” and the one that suggests cancer is a “battle” we can either win or lose.

“Rest in Peace”

We bury people lying down, in coffins cushioned so they’re soft and satiny as a luxurious bed, and we say, to the deceased, “Rest in peace.” Of course the dead can’t hear us, but the language we use to talk about death is important — for us, for how we understand what dying means.

Death isn’t a rest. A rest is something we return to action from. We take a break, we rest, and then we go back to doing what we were doing. Wikipedia says that the phrase “rest in peace” was not found before the 8th century and “became ubiquitous on the tombs of Christians in the 18th century”: “The phrase dormit in pace (English: “he sleeps in peace”) was found in the catacombs of the early Christians and indicated that ‘they died in the peace of the Church, that is, united in Christ'”. (There are a few references cited for that last quote on the phrase’s Wikipedia page.) So “rest,” in the way it was first used in “Rest in peace,” was a metaphor for being together with the person, or the idea, “Christ”.

Whether or not we want to express any sentiments about Christ, I think we all want to be able to express something of the tenderness we feel for someone who has died. Wishing someone a good rest, whether they are living or dead, is a way of expressing our care for them. And humans are so complex — when we say “rest in peace” of a dead body, there is irony, and the melancholy that comes with irony, the bittersweetness of life. The dead aren’t resting, because they’re not going to return to action.

Yet, there’s a way in which they will act — they’ll remain active in our minds, our memories. So, when we say “rest in peace,” maybe it’s like we’re wishing for ourselves that our memories of the deceased will be peaceful. We won’t be haunted or bothered. We’re wishing that we will rest in peace, at least concerning the dead. The inscription R.I.P. on a tombstone, then, is a reminder to the living, Don’t worry about this one — regarding this dead person, you can rest, you can take a break (from worrying about the dead, about death, about your own death).

After all, would we really be comfortable storing a dead body standing up, in a pose that suggests that our dead loved one will reanimate and start walking towards us? It’s like we want our dead a little incapacitated, supine, “resting,” so that we can rest too. It might be interesting to notice if the thought of a corpse interred standing up seems creepy to you, and why.

Dying “after a courageous battle with cancer”

This is the language of war: death is a battle, dying is weakness, and our charge is to be brave and win. But dying isn’t losing, and living isn’t winning, and to tell ourselves otherwise is to delude ourselves. We don’t really have any control over our own births or deaths, or even our own bodies. I know from times when I’ve been sick that my body is really out of my control. In lots of ways, the body is hopeless.

But we only become more fearful about death when we view it through delusion. After all, who really is strong enough to “win” when it comes to death? Nobody. By the rationale of this language, we’re all going to “lose” eventually, because we’re all going to die, and nobody wants to be a loser, so we arm ourselves, we resist the thought of our own deaths — as if by resisting we might overpower death and, somehow, “win.”

But imagine if we didn’t delude ourselves like this. Imagine how much less painful and alienating dying of cancer, or any terminal disease, would be if we all collaborated to view death as a natural, necessary, and maybe even beautiful part of living. When we go for a walk in the forest, we are surrounded by death, but do we really let ourselves see it? Plants and trees wouldn’t be able to grow without the nourishment the decaying corpses of dead plants and trees provide. The beauty of leaves changing colors in fall is due to their dying.

As painful as a disease like cancer is, it isn’t an “enemy.” It’s a natural part of life for us as creatures. Cancer is something that happens to the human body, it’s one of the many ways we decay. I don’t at all mean that we should stop trying to understand how cancer works, or that we should just accept it and succumb. And I know from ordinary sorts of sickness that while I am suffering, language seems distant and useless, sometimes even meaningless. Still, it seems to me that if while we’re well we attend closely to the language we use to talk about illness and death, then we might give ourselves a wider range of options for how to think about what’s happening to our bodies when they’re not well. We might be able to better honor the truth of someone’s life if we can describe their death using language that doesn’t imply they are in any sense a loser for having died, or “lost”.