— Woman finds support in end-of-life doula program
By Brian Arola Mankato
Jane Schostag doesn’t shy away from discussions about death, even her own.
The Skyline woman, a longtime English teacher at Mankato West before her retirement, has terminal cancer.
Rather than avoiding the topic of her own mortality, Schostag has been spending what will likely be her final months reflecting on and preparing for what she calls her “farewell journey.”
An end-of-life doula is helping guide her.
“People have doulas when they have babies because having babies is a lot of work, it’s stressful,” she said. “Well, so is dying, so you got a coach on one end and a coach for the other.”
End-of-life doulas serve as nonmedical companions offering support and guidance on death, sometimes complementing medical services provided by hospice care. A doula’s specific duties vary depending on their background and the person’s needs, but one important quality they share is a willingness to acknowledge and talk about death.
Having doula Mary Beth Trembley with her during this stage in life, Schostag said, is like having a “caring, informed friend” willing to tackle the topic head-on.
By putting death on the table, the hope is people live their final days to the fullest instead of awkwardly avoiding any talk of what will inevitably happen.
“We should treat it as a sacred time and support that process,” Trembley said. “People think it’s morbid to talk about death and dying, but we’re all going to die. It’s part of life.”
Trembley is one of several trained end-of-life doulas in the Mankato area — she received her training through the Conscious Dying Institute in Boulder, Colorado. These doulas meet up monthly to support each other and share resources.
The services can be available on a volunteer basis or paid depending on the recipient’s circumstances.
When they find out about someone in need of a doula, they consider which of them would be the right fit. Sometimes a person will meet with multiple doulas, such as when Trembley introduced colleagues to Schostag because she knew they’d get on well.
Their end-of-life doula network in the Mankato area was just getting up and running when the COVID-19 pandemic started, which made connecting with more people difficult.
Now, as the network looks to work with more people, Trembley and Schostag hope sharing their experiences as doula and recipient leads more people to become doulas and more people to seek out the services.
Schostag found out she had a malignant lesion on her tongue about two years ago at age 76. In her memoir, the tools for which her daughter, Lindsay, gifted to her a couple of Christmases ago, she described the cancer as making her sound like she’s been “hitting the margaritas.”
An oral surgeon removed the cancer, but she next faced a decision about whether to start radiation treatment. She remembers hearing in detail about how the treatment could have debilitating, painful impacts on her head.
Having already enjoyed a full life, she chose to prioritize the quality, rather than quantity, of the rest of her life. It meant forgoing radiation.
“Even if the cancer returns,” she wrote, “I do not think I will choose to do radiation or chemotherapy. At my age, I fear sickness or debilitation more than death.”
If she were younger and still had children to raise, her decision might’ve been different. She feels gratitude for the good run she’s had — from a fulfilling professional career in education to advocating for children in the court system to being a wife to husband David, a mother to Lindsay and a grandmother.
She notes she isn’t saying others should go the route she went, but thinks people who’ve lived abundant years should examine their options before immediately proceeding with unpleasant, possibly debilitating treatments.
To her, doing so risks “outliving our quality of life.”
In July, Schostag learned she had a swollen lymph node near her surgery site. A biopsy on the node misdiagnosed it as negative for cancer, giving it three months to grow before confirmation of the cancer’s return was revealed by another biopsy in October.
By then, the cancer was rapidly spreading. She again elected to forgo treatment.
Schostag was already familiar with the doula program through past presentations and had it in mind to seek out when she needed it. If people need the guidance of counselors before going to college and other important steps in life, she said, why not seek out guidance before death?
“Why not a person who’s an expert at making the best of what you have left, which is really what I see doula work as being,” she said.
She and Trembley knew each other through their church, Unitarian Universalist Fellowship of Mankato. The two met, along with David, in October to review what doula services entail and set a plan for regular meet-ups.
Having family involved and on board makes it easier, Schostag said.
“I think it’s good for families to talk about it,” she said. “We’re gonna deal with the preparations that need to be done. We’re gonna talk about what our thoughts are and what we’re scared of.”
Family and friends otherwise might not know what to say to someone facing death, creating an awkwardness of avoidance. Embracing the subject brings it to the forefront, creating space for people to say what needs to be said before it’s too late.
“It’s interesting what your demise does to other people,” Schostag said.
Doulas can help people work through what to say to their family and friends, Trembley said. They try to bridge gaps, whether the gap is a needed conversation with family or establishing a will and advanced directive.
“When you’re with somebody who likes to talk about death and dying, it’s a different conversation,” she said.
Trembley joined Schostag on her medical appointments, offering another set of ears. Although not all doulas have a medical background, Trembley’s career as a psychiatric nurse proves helpful.
The doula’s work doesn’t necessarily end when their companion’s life ends. They can be a source of comfort to the surviving family afterward.
A grieving person sometimes receives an initial outpouring of support from their social circles before people move on with their lives. Trembley sees potential in doulas continuing to offer support for as long as the surviving family needs it.
Trembley and Schostag think of themselves as kindred spirits when it comes to outlooks on life and death, which furthers their bond. Trembley described Schostag as an “amazing person” whose wealth of life experience will educate people about an important resource.
“By talking openly about death and dying and doula work, she’s helping,” she said.
Schostag’s journey took its latest turn this week when she found out her cancer had spread to her hip area. In one sense, she said after finding out, she felt “very lucky that I went as long as I did without pain.”
Her hospice team has been wonderful, she added. So has her family, friends and doula.
Shortly after starting with Trembley, someone asked Schostag about her doula.
“She’s great,” Schostag recalls responding. “She’s really into death.”
In a society so averse to conversations about death, she said, having a doula on her journey makes the end less lonely.
Enduring, accepting, and embracing the inevitability of one of mankind’s greatest fears.
By Jocelyn Tatum
On my desk at home, I have a true-to-life-sized concrete sculpture of a skull with little porcelain bluebirds resting on its mouth, ears, eyes, and one on its crown. I found it at ArtsGoggle in Fort Worth 13 years ago when the local arts festival was just starting out. I gravitated toward it because it reminded me how fleeting and fragile life can be. The birds, to me, represented the creativity that comes forth in the face of our finitude. The idea was that this mortal reminder would help me get past writer’s block. After all, as a journalist, these stories are not my own. They are your stories. I am merely the vessel who delivers them using my passion and acute sensitivity to humanity. And I borrowed this idea from 14th-century monks who kept skulls on their desks as a reminder of their mortality as they wrote their philosophical dissertations, so this idea wasn’t new. “For dust you are, and to dust you shall return.” Sounds familiar, right? This symbol of death on my desk was a reminder to face my fears head on, and that I am just passing through this world, adding my thread to the massive tapestry that is the story of all us.
I have always thought of myself as a pilgrim. Just passing through. The joys in life like my son, friendships, or romantic partners are merely finite gifts lent to me from the universe, never mine to keep or clutch. I have found that the pain is in the clinging to life or avoidance thereof, whether it is my own or another’s. Peace and serenity lie somewhere in the middle. Everything temporal, everything passing. Life doesn’t have to be so serious, and I think my journey exploring my own non-imminent death has reminded me of this. When achieved, this allows me to live with a free spirit and detachment to the things that weigh me down. And as things have gotten heavier for me lately with my father starting palliative care for his cancer and the loss of a great love in a breakup, I decided it was time to stare death and grief boldly in the face.
Two Fort Worth women just launched their business, The Art of Dying, in January 2023 after completing their death doula training. When I came across their Instagram (@theartofdyingfw), I became curious. Very curious. So, I kept digging. It turns out that a death doula is like a birth doula but assists with the process of dying. They are an end-of-life companion who can guide the dying, whether that is connecting them to a number of resources or inspiring ideas for how to celebrate the life they have left. “The Art of Dying [is a] small collective that offers support, celebration, and companionship to individuals and their loved ones through the end of life.” They offer services for those who have a terminal diagnosis or those who want to plan early in life and are non-imminent.
These end-of-life practices have been steadily growing since the pandemic, according to Alvin Harmon, the head of the National End-of-Life Doula Alliance on an NPR news segment that aired Jan. 17. “How people died, that was what became important, having that safe space, that whole space, people dying in a manner that felt safe to them and was important to them,” Harmon said on air. Any little dignity people had left when dying was stripped of the dying during the isolating loss of COVID-19. This phenomenon led Fort Worth’s Lacy Buynak to get her death doula training. She lost her grandmother during the pandemic.
“As I was grieving her death, I was having this huge collective grief for all of these people who didn’t get that,” she says as tears form in the corners of her eyes. “I started thinking that that has got to be one of the worst ways to go.” She got to say goodbye to her one last time before she died but realized so many others did not have this experience.
Now business partners in all thing’s death, Buynak and Taykor Bell had been friends since attending school together in 2001. Twenty years later, in April 2021, Buynak called Bell to catch up. They had been talking about something else when Buynak said, “I did a crazy thing. I signed up for a training program to be a death doula.” She remembers getting a “holy-shit, so-did-I”-type of response.
The two had been keeping an ear on the heartbeat of death for years as a separate fascination while a parallel nationwide phenomenon of making death more palatable, eco-friendly, meaningful, and even enjoyable was disrupting the $20 billion funeral industry, which celebrity mortician death advocate Caitlin Doughty argues exploits people’s grief and turns it into a profit. After their own experience with death, Buynak and Bell saw a need to provide a comprehensive and holistic service in Fort Worth that also educates the community one death at a time. “We want to hold space for people in those moments. Raising awareness for collectivism, the practice or principle of giving a group priority over an individual, for being there for people,” Bell says.
Bell had her first existential crisis in grade school. She thought about dying and going to heaven and thought, “That is forever.” Her mind kept seeing “road barriers” to this thought of permanence, and anything past that scared her (to death). She couldn’t understand forever. For her, something so big and unknown brought up this debilitating fear. She knew then that death would be her biggest teacher, and her training for this vocation is her life experience. Not only has she read many books over her 40 years alive, but she was able to be there for her mother as she was dying in a way that she would want someone to be there for her. It occurred to her that many people die in the most isolated and sterile way in the U.S. even before the pandemic.
“The vision is to put ourselves out of business to remind our culture to do this for each other. This is a business needed more than ever. There are so many ways people can feel vulnerable and alone, and death is when that is most poignant,” Bell says.
This year marks the 10th year since Bell’s mother died of adrenal cancer. The story gave me chills. When Bell decided to leave her current career, she looked at the amount of money her mother left her, an account she was hesitant to touch because it was the last lifeline to her mom, and it was the exact amount she needed to get her death doula training. Then Buynak called.
Illustrations by Brandon Hayman[/caption]
I met with Bell and Buynak for sparkling tea at Leaves Book and Tea Shop in Fort Worth’s SoMa district. They had a big biodegradable binder waiting for me on the table with their logo on the front. Page 1: “In this binder, you will find a comprehensive list of legal documents to gather, logistics and arrangements to consider, as well as various comfort and care services you may be interested in learning more about.”
Section 1, “Legal: Advance Directive, Durable Power of Attorney, Last Will and Testimony.” This is definitely the least enjoyable part of the process. I went to the websites, which was about what I expected from government sites. Then I had to download a bunch of PDFs to print, fill them out, and then take them to be notarized. Then file them. Bell recommended using RocketLawyer (not a shameless plug) unless you have some massive estate to work through.
Not going to lie, this part made me feel uncomfortable. Itchy. It asks a lot of questions that I really don’t feel like I know the answers to yet. And when it got to the body disposition authorization that included some subtext about whether your body remains are acceptable if you want to donate it to science, I had to step away and get some fresh air. “So you’re saying my body could be rejected even after I die?” I thought.
“We want people 40 and younger to get their [act] together. It can be sad, confusing, and beautiful,” Bell told me regarding the Art of Preplanning, a service they offer to those who get their affairs in order even if death isn’t imminent.
Well, I do not have my act together. And I am not going to lie, this has brought up some feelings. So, I decide once more to procrastinate on the legal paperwork, which Bell and Buynak have both said I need to knock out first because something can happen to us at any moment. Digging into the resistance, I redirected my efforts into research about how to overcome this fear. What I found brought me peace beyond what I could have ever expected.
“The cave you fear to enter holds the treasure you seek,” said 20th century author Joseph Campbell.The New York Times reported a phenomenon in an article titled “South Koreans, Seeking a New Zest for Life, Experience Their Own Funerals” where people choose to face their mortality. “After an instructional lecture and video, participants are led into a dimly lit hall decorated with chrysanthemums, where they sit, often tearfully, beside caskets and write their last testaments. Then they put on burial shrouds and lie down in the coffins,” the article reports. What surprised me is many participants photographed were young and healthy with no end in sight, but some had a terminal illness and wanted to prepare while others struggled with suicidal thoughts and wanted to put those to rest. They reported emerging from their mock funerals and meditations around death with a new and hopeful perspective on life.
Buddhist monks contemplate images of decaying bodies to unlock the door living in the present and letting go of fears. “It makes disciples aware of the transitory nature of their own physical lives and stimulates a realignment between momentary desires and existential goals. In other words, it makes one ask, ‘Am I making the right use of my scarce and precious life?’” Arthur C. Brooks wrote in an op-ed piece for the NYT.
Guided meditations on mortality such as this can be one of many life-affirming activities that can give us a new take on life, according to the resourceful website orderofthegooddeath.com. The website is an endless resource for all things death with everything from how to have conversations about it to how to have an affordable and intimate funeral at home. It was created by YouTube star, mortician, former cremator, and best-selling author of the memoir Smoke Gets in Your Eyes: And Other Lessons from the Crematory, Caitlin Doughty. In an interview on a segment on “CBS Sunday Morning,” Doughty says, “Americans need to think more about end-of-life rituals, instead of keeping death at a distance.” Her advocacy around changing the way we die and think about death has started a movement across the country. “They are just of the belief that the more we talk about it openly and honestly, the less terrifying it needs to be,” the “CBS Sunday Morning” reporter narrates. Doughty’s more recent book, From Here to Eternity, illustrates how death is handled in a more meaningful and intimate way in cultures across the world. What does it mean to have a good death? Is it not to be so separated and detached from the process, to stop looking away?
Doughty even offers a course, complete with videos, lessons, and guided meditations for the price of $195, called Mortal that gives patrons the tools for facing death. Lessons with titles like, “I create my own meaning,” “I meet my true self on my deathbed,” and “There are parts of my death I can control,” help people better cope.
It made me think, why do we wait until the end to start celebrating life? Why do we wait until we are at our rock bottom, when life strips us of everything that we think validates us as humans, to start living in the way we were always meant to?
Ironically, facing death and working with death doulas like Matus and Buynak helped me release the inhibiting fear of loss and to rethink the way I live. And I have been able to show up differently around my father’s terminal cancer. I don’t need to look away, nor do I need to fix it. I can just be with him in it. It puts me at ease to know there is a slew of tools and support out there.
When I was little, I had a fear of being eaten by a monster and dying. I would lie in bed each night staring at the closed closet door waiting for it to open at any time to claim my life. One night, I had the thought, “What is actually in there?” I got up and looked. Nothing was in there, and I started sleeping through the night again. Peace ensued, and a nascent lesson was learned — the pain was in the resistance, the looking away.
American Poet Andrea Gibson’s YouTube video went viral after she famously shared her story about how her cancer diagnosis transformed her lifelong debilitating fear of death into “boundless bliss.” Once she learned that her whole torso was filled with masses, she said she felt her heart immediately begin to open up. She now walked through the world realizing that she may not be here tomorrow, which pushed her deep into the present moment. The paradox is that facing death cured her fear of death. “Why would I waste my time not in search of the celebration [of life] and not in search of awe? There has been so much love this year that I believe legitimately everything is on my side, and I believe death too, is on my side. And the second I realize that death itself is on my side, I felt like nothing could kill me,” Gibson says in an interview.
Illustrations by Brandon Hayman[/caption]
“It is the most supremely interesting moment in life, the only one in fact when living seems life,” wrote Alice James — William and Henry James’ sister — as she faced death.
Whenever I experience some tragedy in life that brings me to my knees, there is also a death to my “self” that happens, which then strips away my ego. All spiritual transformations and religious conversions speak of this. Nature does too after a roaring forest fire burns thousands of years of story to only be reborn in new growth that is stronger. I have to ask myself, is the key to a more meaningful and deeper life usually comes after facing death, figuratively or literally? “All life is lived in the shadow of its own finitude, of which we are always aware — an awareness we systematically blunt through the daily distraction of living. But when this finitude is made acutely imminent, one suddenly collides with awareness so acute that it leaves no choice but to fill the shadow with as much light as a human being can generate — the sort of inner illumination we call meaning: the meaning of life,” Maria Popova of The Marginalian n wrote in an essay.
I watched the movie “Marcel the Shell” the other day, and at the end, the main character, Marcel, reflects on a great loss, the loss of his beloved grandmother, Connie, also a shell played by Isabella Rossellini. Before Connie dies, she led Marcel to a quiet place to perch in the basement where the window was always cracked. There the wind blew through Marcel’s shell creating a new sound, a new experience. In the face of loss, Marcel experiences the meaning of life. “It connected me, I felt, to everything. Because if I wasn’t there, the sound wouldn’t exist, and I felt like everything was in pieces, and I stood there and suddenly we were one large instrument. I like to go there a lot because it reminds me that I am not just one separate piece rattling around in this place, but that I am a part of a whole. And I truly enjoy the sound of myself connected to everything,” Marcel says.
Just before she dies, Connie reads the poem “The Trees” by Philip Larkin. The trees are coming into leaf Like something almost being said; The recent buds relax and spread, Their greenness is a kind of grief. Is it that they are born again And we grow old? No, they die too, Their yearly trick of looking new Is written down in rings of grain. Yet still the unresting castles thresh In full-grown thickness every May. Last year is dead, they seem to say, Begin afresh, afresh, afresh.
We tend to look at death as a failing of our bodies (or minds) when it is a natural part of living, of returning, of renewing. Experiencing death is one of the few things all humans have in common, which makes it a thing that connects us in our humanity like the wind in Marcel’s shell. I learned many lessons planning my death with The Art of Dying’s Buynak and Bell. Lesson 1: When that wave of grief hits, whether it is losing my father to cancer, my boyfriend to a breakup, or facing the end of my own life, I can’t swim against the current. I shall surrender to the fear and pain and fall back into the healing water until that final wave washes me ashore.
Lesson 2: To start living as if it could all end tomorrow and work with the doulas to plan a dinner party with my favorite people complete with toasts and convivial conversations about dying, loss, bucket lists, and to celebrate life.
Rachel Lambert’s ‘Sometimes I Think About Dying’ relies on a highly individualistic approach. We see its modest workplace through the central character’s eyes. Daisey Ridley (Star Wars Sequel Trilogy) plays introverted Fran, who isolates herself in a cubicle of her own accord.
The world moves around without taking notice of her. Her colleagues chat about their lives outside the office while she sits silently in front of her computer, delegating tasks efficiently and getting lost in thoughts.
We do not hear even a single word from her for a long time. She stays tucked in the comfort of her desk, engulfed in her duties. You see her eyes noticing all the humdrum interactions between her colleagues. But she never partakes. When they all gather to bid farewell to a senior employee, she stands on the side of a table, playing around with a piece of cake with her spoon.
Besides a lack of interest or connection to this collective activity, you feel as if she is making a conscious effort not to get noticed. While they brim with liveliness, she resists expressing herself outwardly. Meanwhile, in her solitude, she daydreams of escaping this dreariness and of ways to kill herself.
The film presents an immersive experience of Fran’s rich inner world through thoughtful narration. We see how Fran’s way of learning is through the things that she allows to be part of her reality. We derive a sense of affinity with her workplace and her colleagues while the camera practically acts as her eyes.
The narrative opens us up to its humane themes through her minute observations and heartfelt discoveries. We perceive her as an enigma whose perception is limited to her confined world. Whether it is a crane she looks at often through her office window or a piece of cheese that she mentions as her favorite food, these personal details from her life become a gateway to building her emotional landscape.
Death seems like a viable solution to her misery, and she fantasizes about it in vivid detail. The film gives us a surreal glimpse inside her wildly imaginative mind through its particularly bleak moments. She sees herself on a bed of grass where light illuminates but does not invite her.
Even the tiniest things around her seem threatening when she indulges in her ruminations triggered by her hypersensitivity. We witness her journey toward being more accepting of herself and her life.
The film builds her limited world with clear understanding and utmost compassion. Set in a small American town on the Oregon coast, the narrative lends its distance from the hustle-bustle of modernity by the location itself. Despite its insular nature, the script resonates due to Fran’s journey to break out of her bubble.
After being shy by her volition, we see her slowly open up to Robert (Dave Maherje). This new employee quickly becomes a part of her office through his natural friendliness. Initially, he learns little about Fran besides the type of cheese she enjoys. She sits awkwardly through this meeting for the sake of showing her face.
Later, he makes up an excuse to initiate a conversation with her. She faintly smiles due to a sense of acceptance she derives from it. They chat further without bringing it to the attention of their colleagues. She sees him as a way to get out of her isolated shell of comfort. Even if the thought of getting emotionally involved in him initially scares her, she warms up to it.
However, their individual communication patterns become reasons for their conflicts. He shares a bucketload of information about himself without even realizing that he did. On the other side, she struggles to communicate even a casual detail from her life. Adding to her refusal to express herself, her stoic bluntness bothers him.
The script handles these communicational conflicts in a mature manner. Aside from its clever writing, Rachel Lambert’s direction uses the minutiae of sounds during its long winding silences and grey tones. It capitalizes on moments of discomfort to break out into fascinating moments of dark humor.
We see how Fran’s inclination toward death turns her closer to bleak fantasies in her mind. She blurts out these fantasies without realizing their absurdity. A clever mix of her innocence and years of isolation makes these moments charming.
Between the film’s overall restrained storytelling, they seem particularly hilarious due to an inherent unpredictability. Amidst all its storytelling elements, Daisy’s penetrating eyes keep us glued to this dreary worldview.
Dave brings an innocent affability to his performance that perfectly complements her silence. With all their contribution, the film gently navigates an introvert’s journey to a better place while learning to embrace momentary discomforts.
Nine years ago, near the end of my residency training, I sat opposite a patient, wondering whether he’d accepted that he was dying. He was in his 60s, an artist with sinewy arms and serene eyes, someone I’d come to know well over the past three years. Cancer had broken into his liver and bone marrow, robbing him of hunger and energy.
Each time I saw him, the hollows of his cheeks deepened. I wanted to tell him that he was dying, that I wanted to understand how he envisioned spending his remaining life. But he mostly spoke about his plans: a camping vacation in six months, a friend’s wedding after that.
I awaited some sort of arbitrary signal that it was safe to talk about dying. Maybe he’d tell me that he didn’t want more chemotherapy or that his affairs were in order. Like many physicians, I feared that by talking about death before he appeared ready, I might take away his hope, make him give up or send him into an unstoppable tailspin of anxiety and depression.
Whether he hadn’t accepted his fate or simply wished to avoid the subject, he didn’t appear to be ready to talk about his death. How could I reconcile what appeared to be our radically different interpretations of his condition? By waiting for him to act in ways that I understood as acceptance, I thought that I was being compassionate and sensitive.
“I don’t think he understands how sick he is,” I told my supervisor. “He’s not there yet.”
In the years since, I have learned that trying to find immutable evidence of someone’s readiness to die is like trying to wrap your arms around a ghost.
Reconsidering what we think acceptance means — and whether it will come to pass — requires loosening our expectations of those who are dying. To become better at talking to one another honestly about death and to truly prepare for it, we must first understand why we expect the dying to demonstrate readiness in the first place.
During residency, my compatriots and I relied on Elisabeth Kübler-Ross’s stages of dying. We were quick to diagnose denial and wait for acceptance. We assumed certain decisions that we wanted people to make reflected readiness — a patient with heart failure who agreed to a do-not-resuscitate order, another with emphysema who enrolled in hospice.
But if patients dying of cancer insisted on life support, we figured that they probably weren’t there yet. When people sobbed or screamed during conversations about their illness worsening, we told ourselves they simply weren’t ready. We didn’t want to stumble through the thicket with them; we wanted to meet them at the clearing.
My patients’ families often searched for similar clues, their pain amplified if their loved one didn’t appear to have come to terms with death or wasn’t ready to let go. Such searching, while well intentioned, betrays fears about suffering — the patients’ and our own. If the dying reassure us that they are ready to die, perhaps we may live with a softer grief. If they show us that they are ready to go, we can be readier to let them go.
The stark separation between those who are dying and those who are not is complicated inside a hospital. Family members and medical teams experience and respond to dying people’s suffering in distinct ways. Yet doctors and families alike can shackle those who are dying with gauzy expectations: Perhaps they have newfound wisdom to bestow. Maybe their regrets will remind us what really matters in life. Saccharine fantasies of deathbed reconciliations protect us from the full spectrum of our emotions and those of the people we will lose. But romanticizing the dying strips them of their complexity. They are still human, equally capable of picking fights or making amends.
Fantasy also obscures a scarier question: If a loved one or a patient isn’t ready to die, how should we respond?
It is easier to search for readiness than to process what its absence means. Distilling human experience into supposedly self-explanatory concepts like accepting death becomes a bandage that we apply, hoping that the raw emotions about death won’t bleed through. We want neatness and containment, not the spill of grief.
But death is never neat. A good death should be defined by how well and honestly we care for the dying, not by their performance on our behalf. Expecting them to make death a process full of insight and peace only limits our full emotional and spiritual participation in their death. By sacrificing neatness, we can have a conversation about what the dying truly need from us. Understanding their authentic experiences helps us not only to see them more fully but also to prepare, together, for losing them.
Nine years ago, I wasn’t ready to confront my expectations of my patient; doing so would have required dismantling the myths I had about myself as a steward of hope. My expectations were a self-aggrandizing way of holding him at a distance. Fearing that he couldn’t handle a conversation about death was infantilizing, a form of paternalism, however well intentioned. How was I any different from physicians in decades past who withheld patients’ diagnoses to spare them suffering they supposedly couldn’t handle?
To be the physician my patient needed, I had to accept that neither he nor I could be fully prepared for his death. I had to trust that a man three decades my senior was capable of handling life-altering information, that he had experienced tremendous loss before, that nothing and nobody could control how he would contend with this last leg of his life. But instead, I waited for him to initiate a conversation that was my responsibility to start.
Now, as an attending physician, I hear echoes of my younger self when I talk with residents. If they mention that a patient isn’t ready to die, I ask what it looks like for someone to be ready to die. I remind them, gently, that awaiting specific imaginings of readiness may only justify excusing themselves from sharing hard truths with someone whose reactions they cannot anticipate. Abandoning this search may allow them to care for people in a way that might inspire their own versions of preparation.
Nine years ago, I think my patient sensed both my urge to tell him something and my hesitance. “Are you OK?” he asked me one day.
“I’ve been meaning to talk to you about something,” I stammered, looking past him at the eye chart on the wall. “I’m worried about you, because every time I see you, you’re losing weight and seem less like yourself.”
“It’s because I’m dying.” He was matter-of-fact, as though he’d just said it was raining outside.
I was stunned, then relieved. Yet I still struggled to tell him what I wanted to say. “I am so sorry,” I whispered.
“It’s not your fault. My father died in my arms. So did my wife,” he said. “It’s just my turn now.”
“I feel bad that I didn’t talk to you about this sooner,” I said. “I thought I’d upset you or maybe you weren’t ready yet.”
He laughed. “Ready?” he said. “I’ve wrapped my head around being dead, certainly. Not sure if I’ll ever really be ready. It’s not like packing a bag and standing outside waiting for a taxi.”
He died in his sleep a month later, missing his vacation and his friend’s wedding. Even if he told me he was ready, nothing could have lessened the blunt force of losing him.
The fact of our mortality is something we don’t like and tend to avoid. The face of death is one that drives our inner gaze away to livelier subjects should we happen to glance at it with our mind’s eye at odd moments, perhaps during the deep quietness of the 3am sleep-slipped nowhere time. But death, loss, and grief are all too insistent a part of life, despite our most fervent desire that it should be otherwise. How we face this inevitability, and the means for doing so, is the subject of this collection of philosophical essays by a range of scholars and thinkers. As always with a collection of this kind, there are some that succeed more than others, but the parts just about cohere into a whole that considers the meaning of mourning: what it is, how we perceive and practice it, and where it leaves us in the absence of the one who is gone, all of which help prepare us, even if only in a small way, for the day when the grey rain curtain of the world pulls away, and we step onto the new path.
Setting the Scene and Defining Terms
The collection spans fifteen essays from various disciplines and perspectives. The editor, Slawkoski-Rode, writes in the introduction that “while the collection is not designed to serve as a comprehensive study or companion, it assumes a holistic, interdisciplinary approach to the theme of mourning that combines philosophy, theology, psychology, medical science, and the arts.” The Introduction notes the universality but also the religious, cultural, and ethnic particularity of mourning and defines mourning briefly as “the public display of grief caused by the loss of a loved one.” As the introduction notes, the following chapters “invoke … the idea of mourning in a broad sense, which goes beyond” this definition.
Several of the chapters defined the matter of mourning in a more specific way. One is found in the chapter “Mourning: A Phenomenology,” where “Mourning, to put it simply, is the intentional structure of the extreme loss, especially death, while death is the material core of this intentional structure.” Another chapter, “Meaning and the Recognition of Value,” defines “grief as a kind of strong negative emotional response to loss, and mourning as a somewhat wider concept encompassing grief as well as patterns of behavior that manifest or are influenced by such grief.”
Mourning thus articulates and gives shape to the inchoate, roiling sea of grief that roars through the hearts of those in its grasp. Mourning, properly understood and practiced, is a beacon signalling the way to the dry land of gradual acceptance and closure, reconciliation with oneself for having outlived the lost and with the lost for having left us behind. The book is structured thematically, with the first six chapters philosophical in orientation. To begin, four chapters “that consider the metaphysics of death and the theology of loss, including expressions of these ideas in ritual form and their implications for concrete experiences, like reproductive loss,” followed by “two chapters which analyze the relationship between mourning and the recognition of value, and the role hope plays in the experience of loss.”
In a more personal psychological vein, the following four chapters “explore … themes in the psychology of loss and the psychological roots of grief in early childhood, psychological vulnerability to loss in later life when opportunities for rebuilding meaning are diminished, and the interpersonal phenomenology of loss.” The book then moves to the realm of political philosophy, “to a set of issues connected with public and cultural aspects of mourning . . . Community mourning and the need for public commemoration is considered, and how these may become complicated by cultural or historical factors. Differing attitudes to the loss of an idea are contrasted, and how mourning can be expressed in the rethinking of intellectual heritage of a culture.” The book draws to a close with a reflection by the sculptor Alexander Stoddart on “the cultural role of sepulchral art,” and ends with Alexander Tallis meditating on the need to live with loss.
Overall, this book proved of significant value to me personally, of which more below. But it is not without flaws. This is an academic book, so we are therefore subject to the sadly expected dry, dense prose of academic writing in a number of the chapters. It seemed to me that the essays could be divided between those philosophers either unconnected to, or retired from, the academic life, and those still working within its halls, a divide delineated by the fluency or otherwise of style, and eloquence or otherwise of expression.
Those who wrote from this more formally academic position therefore laced their writing with the buzzwords necessary to stand up before their peers and the forces of publish-or-perish. Not everyone can approach the eloquence of an Anthony O’Hear or a Roger Scruton, but some of the chapters were so technical in subject matter and impenetrable in style that what could otherwise have been an intriguing approach to the subject of mourning was rendered illegible.
As one example, Amber L. Griffioen’s chapter, “Toward a Philosophical Theology of Pregnancy Loss,” considers a truly heartrending tragedy faced by many women, when “40 percent of all pregnancies do not result in a live birth.” Yet the use of Critical Theory and Gender Studies jargon acted as a barrier to a deeper understanding and appreciation of such a tragic part of the female experience: The repeated references to “neoliberal capitalism,” and “patriarchy,” calls to be “inclusive of all persons capable of gestating a human being inside them,” the ever present need to engage in different “discourses,” and finally the construction of a gestational model of God, God as potential birthing mother. Given the number of women who go through such a harrowing episode, and the ripple effects of grief and loss through those around them, this chapter represented a sadly missed opportunity because as Griffioen writes, there is a gap in the philosophy of loss and mourning for the life that ends before it begins.
Two other chapters that were less than successful for this reader were the aforementioned “Mourning: A Phenomenology,” by Balázs M. Mezei, and Mourning and the Second-Person Perspective, by the editor of the volume Mikołaj Sławkowski-Rode. It must be noted immediately that the main issue here is that I am not a trained philosopher, and I am especially not a phenomenologist. Both authors refrained from employing an opaque style of composition, but the expression and specific terms and phrases central to a field like phenomenology meant that I struggled to make head or tail of these essays.
This is, again, a shame because the question at hand, of death and how we encounter it, is such an endlessly urgent subject that I couldn’t help but feel disappointed at the opacity of these chapters. On the other hand, the fact that it was a struggle to grasp these chapters’ meaning at least shows they were nevertheless compelling enough to demand such an effort. The essay on “Grieving and Mourning: The Psychology of Bereavement,” by Colin Murray Parkes was much less compelling, bogged down in a scientism that failed to approach the matter at hand in a way that had an impact. This could not be said for the remaining chapters, all of which spoke powerfully, at least in some way, to the matter at hand.
Tending the Graves of the Lost and the Graves Within our Hearts
As Cathy Mason and Matt Dougherty argue in Chapter Six, for us to grieve and mourn means that there must be something of close to inestimable value that has been lost. This in turn reveals the fact that we as God’s creation find the value inherent to life, recognising its intrinsic nature. Mourning and grief may signal something of depthless sadness, but they also point to the fact that even in this darkness, the light of something to value is there, as the act of mourning and the feelings of grief testify to this. There is then the guilt felt when these all-consuming feelings recede after a time, as they do for most of us. This might suggest a less-than-wholesome sentimentality, an artifact of our neural biology feeding us different hormones at the loss of a loved one, undermining the claim of the sincerity of our attachment to those who have been detached from us.
But as the authors write, moving forward can itself be defended as a form of correctly valuing something. After all, in the Jewish tradition, one mourns the loss of a loved one for a year, but then one is expected to re-enter the land of the living, to say yes to life. Remaining forever in the shadow of the valley of death is a wrong, to oneself and to the one no longer here. Indeed the authors argue that moving on with life may be a sign of having given proportionate honour, respect, and love to the lost. If one is in a state of grief-stricken solitude ever after the loss, does that really point to an appropriate response?
If, as the authors write, “virtue, on a common conception, involves both acting well and having appropriate affective responses. For our purposes, the latter is the relevant aspect of virtue” one might suggest that this constitutes a devaluing of the mourning process, and therefore of grief at the losing of a loved one, and even a devaluing of love itself. Surely the one who is here no more would themselves be grieved if those left behind were reduced to some living death of bare existence, rather than moving forward through the rest of the life they have? As the authors conclude: “In the act of mourning, we mourn something or somebody lost, yet we connect this loss to the renewal already heralded in the act of mourning. Mourning is the gateway between decay and renewal, degeneration and generation. As opposed to melancholy, mourning uncovers the way to self-renovation, either at the individual or the communal level, and so it stops the ‘whirlpool,’ the self-destructive power of depression.”
To avoid being drawn into the trap of melancholia, grief and loss must be given shape and a context within which one can express such deep and powerful emotions. Religion has traditionally been the main form and means by which we have done this. In light of this, “What Can the Roman Catholic Liturgies of the Dead Offer Mourners: Solidarity with the Deceased and Hopeful Protest?” by Richard Conrad OP describes in detail the different forms this Liturgy has taken over the centuries, comparing the Old and New Liturgies and their differences regarding their approaches to death and mourning. Conrad mounts an eloquent defence of the perspective he argues is implicit in the Old Liturgy. For him, this form emphasises death’s unavoidable reality, and the loss-induced pain that accompanies it. In the Old Liturgy, Conrad holds, the different stages of prayer, ceremony, and reflection all provide a way to articulate the mix of sorrow and gratitude that people feel, as well as the anger at the injustice of the death of a loved one, which he sees as justified, a justification rooted in Christian theology.
This chapter’s focus on theology as well as its liturgical expression was both enlightening and consoling in equal measure: enlightening for its explication of a form of worship, remembrance, and mourning that I as an Anglican am not familiar with; consoling, for the depth of its commitment to describing something that fulfils Jesus’ proclamation that he lays no burden on us that we cannot bear. The Catholic Liturgy of the Dead guides the mourner through the vale of tears into which we plunge at the death of those closest to us, illuminating the path with the lamplights of faith, thereby illuminating the souls of those left behind with the warmth of Christ’s love. This instils a sense of hope that while death is an evil, for “God did not make death, and he does not delight in the death of the living,” it is also not the end of all things, our wretchedness having been saved and our pain salved by the sacrifice of Christ.
As the author writes, Aquinas saw death as both evil and natural, the evil of our life on earth ending in service to the greater, perhaps ultimate good of passing through to God’s Kingdom, uniting with the love that surpasses all understanding. The possibility of a final redemption and salvation is open to all those who repent of the sins and wrongs of their life, inherent to our lives in a world broken by sin, rooted in our fallen nature. The journey through the evil of death to the ultimate good of God’s friendship has been made more glorious by the overcoming of our Fall, more glorious indeed than if we had never fallen and known all the sufferings and wrongs of the world we call home. For Conrad, “In sum, death is a natural necessity but not a good; it is an enemy to be defeated. But it is indirectly willed by God, in a small way as penalty and sobering fact, in a more positive way for solidarity with Christ’s victorious journey through death and as a stage in our liberation to glory. The current Liturgy of the Dead seeks to emphasize how being patterned on Jesus’ Death leads to being patterned on his Resurrection.”
What happens, though, when we cannot come together to mourn through reciprocal acts of belonging? John Cottingham considers this question in Chapter Eight, “Bereavement, Grief, and Mourning,” in which he reflects on the challenges thrown up by the lockdown and social distancing responses to the Covid-19 pandemic. He argues that, deprived of the social contact that comprises the texture of a meaningful life, many of us experienced a kind of bereavement that may seem inconsequential when contrasted with those who faced and face actual bereavement. However, this kind of coerced social detachment sundered the links between human subjects, turning us into objects to be avoided for fear of infection and contamination.
To communicate the power of mourning in times of bereavement, Cottingham draws on a wide array of literary and religious references, from poets to the Psalms and the Gospel of Luke. These literary forms give structure and substance to one’s grief and sorrow as the Liturgies do, but in a broader way, reflecting the synthesis of the universal with the particular which comprises the ground of life. One quote that struck home for me was Dante’s, when one of his characters states that there is “No greater grief / Than to remember happiness gone by / In time of sorrow,” a line that explains why remembering times of joy in times of sadness increases the sorrow as much as the gladness of remembering such a time. Even so, sometimes grief can draw you into yourself, away from such memories where, as John Keats wrote, the muffled bells of mourning “tolls me back to my sole self.” This inward turn can mean that the outward world seems to mock us with its contrast, leaving us, in the words of J.H. Housman,“I, a stranger, and afraid, in a world I never made.”
These sentiments, expressed in poetry, are also given voice in the prose of Eleonore Stump’s chapter, “The Problem of Mourning.” Stump makes the point that mourning and grief at the supposed evil of death seem a strange reaction to someone’s passing over when traditional Christian theodicy holds that all parts of our lives, good or ill, are redeemed by the unification with God. Stump also makes the point that it is strange that the Creator should not Himself be in mourning at the fallenness of His creation, i.e. our sinful nature and the distance between our current state and the one into which we entered with God’s breath of Life still felt on our faces. In light of the Fall, Stump asks, “Why is there not something sad at best or devastating at worst about the lives of human persons in the post-Fall world, even if those persons are redeemed and restored in the end?”
Over the rest of the chapter she considers this question, wrestling with “the felix culpa view, which supposes not that the story of God’s creation with the Fall and its subsequent suffering is a disappointment for God but that, on the contrary, the world with its history of sin and suffering is better and more glorious than the world would have been if there had been no Fall.” This is the view held and defended in the chapter on the Liturgies for the Dead. Stump quotes the apostle Paul, who writes in Romans that “his true self is characterized by the higher-order will for the good. That is why Paul repudiates as alien to himself—alien to his true self—his own first-order volitions that are discordant with that second-order will.” As a result, “even in his internally fragmented state, the self that wants to will what is good is his true self.” Stump then questions what comprises the “true self” in light of “the wounds and scars of post-Fall human life.” Are these examples of the suffering that is part of life and so in fact crucial to our perfection through redemption in Christ?
This chapter thus proved particularly relevant for me, as it reflects something that I have also wrestled with, having been born with a genetic fragile skin condition that brings physical and emotional suffering in its wake, and which will ultimately prove fatal. As Stump argues, the suffering I experience is not reducible to these forms, however. It is also a result of what we as dependant, rational animals care about, which itself suggests a value hierarchy upon which we base our view of what and who, does and does not matter. This is as true for me as any able-bodied person, and perhaps more so, with my condition heightening and concentrating the experience of the human condition in all its triumph and tragedy.
As Stump writes, “Every human person has some care about what kind of person she is and about her being what she ought to be, where what she ought to be is something like thriving as a good specimen of the species human being. Consequently, part of what it is for a human being to suffer is for her to be kept, to one degree or another, from thriving, in this broad sense. What makes a human person thrive, however, is an objective matter.” At the same time, “what human beings care about has a subjective element too, which does not have to do just with thriving.”
In sum, “if we take suffering to be a function of what a person cares about, then suffering can be understood this way: a human being suffers when she fails to thrive, or she fails to have the desires of her heart, or both.” Out of this, we can say that “If in heaven a human being is her true self in its perfected state, and if in heaven she does not suffer, then in heaven she has, harmoniously ordered, both thriving and heart’s desires. She has the convergence of what she cares about on both an objective and a subjective scale of value.” Therefore, “the perfected version of a person’s true self, the condition of a person in the afterlife in heaven, is what she is when what she most cares about, in both an objective and a subjective sense, converge in her and in her life. … On Christian doctrine, human beings are made in the image of God. The perfection of a human person’s true self will thus also be the fulfillment of that image in her.”
The doctrine of the Trinity holds that God through Christ suffers with us and as we do, taking the sin and suffering of the world on his shoulders, which means that “the nature of God is most evident in Christ’s crucifixion because love is greatest and most evident there.” Therefore, “If it is the image of God in human beings that perfects the true self of a human being, and if the nature of the love that is God is most evident in the crucified Christ, then there may be some way in which the wounds of human suffering could intensify the image of God in a human being too.” It is because of this that “It may be possible to see a way in which the wounds of a person’s suffering could become for that person an image of Christ. On this way of thinking about the perfection of the true self of a human person, what makes a human person glorious and perfected is her resemblance to the incarnate Christ when the love of God is most manifest in him.”
Bringing the chapter to a close, Stump presages and defends the felix culpa view of suffering and loss seen in Conrad’s defence of the Catholic Liturgy of the Dead by arguing that
If the love that is God’s nature is most evident in the wounds of the incarnate Christ and if the wounds of human suffering could be suitably connected to Christ, then there is a basis for an argument that the wounds of a post-Fall human being can render him more in the image of God than he would have been had there been no suffering in the world. In that case, on Christian doctrine there would be something more glorious about redeemed human beings with wounds than there would have been had there been no Fall, no suffering, and no wounds and scars. On this view, it is the image of love incarnate that makes a wounded post-Fall human person more glorious in his true self than he would otherwise have been, and the image of love incarnate in the true self of a human person would have been less in a world without a Fall.
Again, this is something that I have reconciled with over my own life, as I’ve come to accept the final limit of mortality, one that we all share as the limited beings we are, but which I am subject to as I am to life’s sorrows, in a heightened and concentrated form. The cancer that will ultimately set me on the journey from this world brought me face to face with the death that we must all come to terms with. Some cannot do so, and ceaselessly seek a way to avoid stepping onto the road of our final journey. Most know that this is our fate, but understandably do not wish to think on it too deeply.
And yet, having accepted and reconciled with my finitude and the fact of my life’s end does not preclude sadness or a sense of regret. It is in this vein that Cottingham quotes Gerard Manley Hopkins’ poem, “Spring and Fall,” where the young girl Margaret weeps over the fall of Autumn’s golden glory:
Margaret, are you grieving
Over Goldengrove unleaving?
Leaves like the things of man, you
With your fresh thoughts care for, can you?
Ah! as the heart grows older
It will come to such sights colder
By and by, nor spare a sigh
Though worlds of wanwood leafmeal lie;
And yet you will weep and know why.
Now no matter, child, the name:
Sorrow’s springs are the same.
Nor mouth had, no nor mind, expressed
What heart heard of, ghost guessed:
It is the blight man was born for,
It is Margaret you mourn for.
Here Hopkins demonstrates the unique ability of art and literature to bring together the universality of the good, true, and beautiful, of morality itself, with the concrete experience of our own lives through which these moral ideals are made real and therefore attainable and comprehensible. The experience of seeing a striking winter’s day, the glitter of frost caught in the sun’s embrace, is as meaningful as the soft, sad beauty of the autumn, when we are reminded that our time here is short, but that it still has inestimable value for the fact of our being here to witness the glory and tragedy of God’s creation, the knowledge of our passing away intensifying the joy by edging it with sorrow. As Cottingham writes, each of us can feel the griefs of life during the succeeding stages of our lives, and no age or stage has a monopoly on such a thing. Is my grief or sense of mourning any greater or more righteous that someone older or younger? Of course not. What binds us across time and across the space between us in the here and now is the shared particularity of our sorrow, and the hope that there is a redemption to it in our lives and after we’re gone. We all, as Thomas Hardy writes in “At Castle Boterel,” see our lives and the loves we have known, we
look and see it there, shrinking, shrinking,
I look back at it amid the rain
For the very last time; for my sand is sinking,
And I shall traverse old love’s domain
As Gandalf says near the end of The Return of the King, “I will not say do not weep, for not all tears are an evil.” This approach is echoed in the last two chapters considered here, by Anthony O’Hear and Roger Scruton. As O’Hear writes in “Mourning and Memory, Private and Public Dimensions,” “Christ, who had not foresworn this life … was moved by the tears of Mary to summon Lazarus from the grave (John 11:33).” Citing C.S. Lewis in his masterpiece, A Grief Observed, O’Hear reminds us that to leave our grief in its most private space, within our hearts, is to leave it to tear out what makes one alive from the inside, to leave one hollow and on the edge of despair. This kind of private grief is ultimately selfish, and it precludes the coming to terms in community that is the only way we can reconcile with the new world as interdependent individuals. O’Hear also references Aristotle’s call togive appropriate honour to the departed, to treat the body with awe for its constitutive part of life, but not to put the lifeless body in place of the living person.
Rituals and ceremonies of memorialisation and commemoration enable the rightly ordered expression of grief and mourning that binds up the hearts of those afflicted, through the binding together of those from whom the dead have departed. O’Hear gives a moving example of the potential for such a beneficial result when he describes the ceremonies of mourning and memorialisation undertaken in Ireland to remember those who died during the violence of the Troubles. Of course these could not totally heal or undo what had been done by either side; the world had still been rent and torn by the violence. But it at least brought people to reflect on the hope still intrinsic to life, the possibility of forgiveness, and the way forward to a future oriented to human flourishing, even in light of our fallen, flawed natures. If we become wrapped up in our private grief, not only do we neglect those around us now but also the past with its memories of those who went before and the future with those who will come after. We therefore build a tyranny of our grief, silencing and depersonalising those who do not share our inner, consuming turmoil. As such, these acts of remembrance and reconciliation not only serve to reweave the frayed ties that bind between people now but also across the years, restoring the cords of memory that bind the dead, the living, and those yet to be born, giving them back their voice in the democracy of the dead and the unborn.
Scruton’s chapter complements O’Hear’s arguments through an examination of an example of mourning made complicated by a terrible history and cultural suicide. Scruton reflects on the seeming impossibility of mourning for a destroyed culture, an impossibility that has come to define the German experience due to the recruitment, often willingly accepted, and subsequent exploitation of this nation’s undoubtedly great cultural heritage by the Nazi death cult. Scruton argues that such a culture of repudiation—one which refuses and discards those values which many Germans feel in their hearts have been tainted beyond purification by such use as the Nazis put them to—creates a conflict deep within the national soul. This deliberate discarding, repudiation, and ultimate suppression of the past denies the duty of piety we have towards those who came before.
This purposeful rejection of the past as such is not only confined to the German context, although given the horrors unleashed, it is certainly a special case. This denial of an obligation towards the dead is common across the Western world, constituting what Pascal Bruckner calls a “tyranny of guilt” that has risen to power in our cultures. This emphasises only the terrible things our ancestors did and ignores the noble things they also achieved. The result of the refusal of this obligation of piety, maintaining the threads that bind the past, present, and future into the tapestry of our culture across time, means that our role in remembrance remains unfulfilled. As Scruton closes by arguing, this makes it impossible to reconcile with the past, accept the loss that is our lot, and move forward having laid the dead to rest in one’s own heart. Without tending the graves of the dead, we leave the graves in our own hearts uncared for, scarring our souls as a result.
This collection of essays was not always successful in its aim to encourage reflection on the meaning of mourning. Its flaws demonstrate some of the problems with academia today, whereby employment of complex theoretical terms and language overrides clarity of communication and eloquence of expression. However, for the most part the collection succeeded in making me reflect on the reality of loss and the grief that precedes it and results from it. The need to reconcile with one’s finitude and live as good a life in light of this was made clear by many of the more successful essays and tallied with my own experience of coming to terms with the limits on my life from my condition, both in an everyday and an ultimate sense.
However, this reconciliation and acceptance can only be achieved in community with others, when one’s life feels knitted into a greater whole, our existence part of the greater life of the social ecology. This applies not only to the present, but also to remembering the past and anticipating the future. This has been something that those like O’Hear and Scruton have taught me, and the other essays in this collection that resonated layered atop these contributions, adding to the sediment of meaning that accrues over a life lived in a world that is a home from which we journey to our final rest, where our hearts finally know peace.
When I tell people I worked at a funeral home, I expect one of several responses: they are surprised, change the subject or express how depressing they think the job is. There were some sad days during my two years of work as a funeral arranger in the deathcare industry, but I felt great satisfaction in helping and supporting people during a hard and stressful time. The lessons I learned from having a front-row seat to hundreds of families’ grief have remained with me, and there is a benefit to sharing those lessons with others.
The importance of talking about death, dying and grieving is not always fully understood in our culture and it is often treated as taboo. A 2022 study by a life insurance company, Ethos, found while Americans think about death frequently, they do not talk about it. Among other topics considered to be inappropriate or uncomfortable in polite society including money, sex, politics and religion, the study stated people would prefer to talk about anything other than death.
Despite this unwillingness or inability to talk about dying, it is a universal experience. Everyone will die, and will experience the death of people they love, whether they discuss it or not.
There have been increased efforts to start discussions around death and grief recently, as people question established funeral practices and challenge cultural norms. Organizations like The Order of the Good Death and Death Cafe began to give an appropriate forum to talk about more morbid topics.
“It is never too early to start thinking about your own death and the deaths of those you love,” Doughty said. “Accepting death doesn’t mean that you won’t be devastated when someone you love dies. It means you will be able to focus on your grief, unburdened by bigger existential questions like ‘Why do people die?’ and ‘Why is this happening to me?’ Death isn’t happening to you. Death is happening to us all.”
I saw firsthand how families were able to address their grief around the death of a loved one when they were better prepared for it. Of course, there are instances of tragedies that catch people off guard, but generally being at least a little prepared for death and funeral proceedings provides more time and mental capacity to grieve the loss.
“It is never too early to start thinking about your own death and the deaths of those you love.”
— Caitlin Doughty
Another important lesson I learned about grief while assisting families is there is no singular way to grieve death.
As I worked answering phones, greeting people and taking information for death certificates, I had the privilege of talking to people of all ages, races and religious affiliations. All had experienced the death of someone they knew, but beyond that, they did not share much in common.
Some people were relieved that an elderly family member was no longer experiencing pain or chronic illness. Some were hysterical over the death of someone lost at a tragically young age. Others came in a numb state or were ready to get down to business.
I spoke to people who wanted to tell me their whole family history or love story. Others hadn’t heard from the deceased in years and had little to share.
One young woman around my age conducted herself with an almost preternatural composure for the entirety of her father’s funeral, only to break down in sobs when it was done. She told me she felt selfish because she didn’t want to take away attention from her dad, but over the course of the previous week, the rest of the family forgot her birthday had come and gone.
One of the questions I heard repeatedly was a variation of “What am I supposed to do? Is this normal?”
But there is no single way to grieve, and no way that is inherently right. Grief has as much to do with the person who died and all they represented as it does with the people who are living.
Over the years, there have been different theories and models created to explain the process of grieving. Perhaps the most well-known is the concept of the five stages of grief.
This model of grieving was originally introduced in the late 1960s by psychiatrist Elisabeth Kubler-Ross. The main takeaway from this framework was people may feel or work through emotions of denial, anger, bargaining, depression and acceptance when facing a loss.
Kubler-Ross updated the concept of the stages of grief over time, writing with David Kessler in “On Grief and Grieving”:
“They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss as there is no typical loss. Our grief is as individual as our lives.”
Kubler-Ross acknowledged that people who reach the acceptance stage have not necessarily conquered grief. A misquoting or misunderstanding of the stages has contributed to the idea that a person can work through the stages and then move on.
This framework can still be helpful in letting people know the emotions they feel are valid and acceptable.
“Our grief is as individual as our lives.”
— Elisabeth Kubler-Ross & David Kessler
However, there is another theory around grief that was introduced to me while I was working in the funeral industry which I have found more helpful and accurate to people’s experiences.
The concept of “growing around grief” was introduced by a grief counselor, Lois Tonkin, in 1996. Tonkin had spoken to a mother who lost a child and participated in an Elisabeth Kubler-Ross workshop to address her grief.
Rather than finding that her grief had disappeared as she worked through her emotions, the mother reported it instead stayed the same size, but with time “her life grew around it.”
Tonkin illustrated the model with a simple graph showing a large, white circle representing life, with a smaller, shaded circle within meant to represent grief.
“There were times, anniversaries, or moments which reminded her of her child, when she operated entirely from out of the shaded circle in her life and her grief felt just as intense as it ever had,” Tonkin wrote. “But, increasingly she was able to experience life in the larger circle.”
In the immediate aftermath of a death, it can be hard to imagine life will go on. While I was working, I often saw families over the course of several weeks or months after a death had occurred. With time and further life experiences, their grief did not disappear, but they were able to function and forge on.
Tonkin’s concept of grief is encouraging in these instances because it does not imply a person will forget their loved one or shrink their grief, but rather add to their own life after loss.
“In this way, they continue the process of integrating the loss with their lives and moving forwards,” Tonkin wrote.
It may also become easier to grieve as Americans work toward offering increased options for deathcare and the disposition of remains.
Today, burial and cremation are the primary options available to Americans. For those who have not made plans ahead of time, the process falls upon family members who can feel overwhelmed and left without sufficient options.
“Choice doesn’t enter the picture for the average individual faced, generally for the first time, with the necessity of buying a product of which he is totally ignorant, in a moment when he is least in a position to quibble,” Mitford wrote.
The high cost of funerals, along with the limited choice and opportunities for personalization add stress to families and leave them wondering if they made the right decisions.
While I was working, I saw people seek out ways to incorporate creativity into arrangements for their deceased friend or family member, and I saw how satisfying this could be.
There were instances of people bringing in nontraditional items to use instead of cremation urns, including canning jars or teapots belonging to the deceased. The local Indigenous community built their own caskets for tribal members on several occasions, creating something personal through community effort, often emblazoned with farewell messages and signatures.
These were ways to work around the impersonal and often more expensive options available, and they were a truer representation of the person who had died.
Thankfully, though I was only able to offer burial and cremation options while I was working, increased choices should be available to some states soon.
California recently decided to allow alternative disposition options including alkaline hydrolysis, commonly known as “aquamation” and terramation or “human composting.” Human composting will not be available until 2027, as requirements and standards are currently being put in place.
Both options are more environmentally friendly than traditional cremation, and existing terramation companies have shown an interest in involving families in the process and offering personalized service.
Green burials, where a body is not embalmed or buried in a traditional casket are legal, but often cemeteries will require specific items which make green burial impossible. Cemeteries dedicated to green burials or conservation burials are gaining interest, but are still less available than traditional options.
Further education and discussion about these topics can only open the door to providing more options for grieving families to feel they are honoring their loved ones in ways that bring them satisfaction. Through researching and spreading the word about alternative burial and cremation options, we can assist in opening the door for legislation to allow them. This can also lead to pressuring existing businesses to offer a broader range of services.
I can’t claim that I have attained a level of enlightenment from my experiences in the funeral industry that will keep me from feeling grief when those close to me die. In fact, I know the opposite will be true and their losses will hurt deeply. However, I’ve seen from the example of others that life can and will go on.
I also hope through supporting legislation and education about increased options for deathcare, I may be able to provide my loved ones and eventually myself with an appropriate, fitting end. Personally, I want to be buried in a green burial cemetery or composted!
From what I have learned, I hope I have a better grasp on the concept of my own mortality, and I am able to offer more grace and empathy to others in grief — and to myself. Those are the values I find most important from the lessons I’ve been fortunate enough to learn from both the living and the dead.
In her 2021 documentary Dance Me to the End of Time, South African film-maker and educator Melanie Chait has produced a truly great film. Not only for the breadth of themes it broaches – from cancer to green activism, from lesbian love to arts therapy – but also for the intensity with which she deals with these themes.
One of the hallmarks of a great film is its ability to transport audiences; to hold their undivided attention and evoke deep emotions in them. The documentary does this, as it pieces together four years of home movie footage filmed by Chait.
This very personal, award-winning film chronicles the final years and death of Chait’s life partner, London theatre director Nancy Diuguid. Diuguid died from breast cancer. The film is, of course, more than just about the death of Diuguid. It is also about the triumph of lesbian love in the face of death as well as the ecological and feminist politics of Chait and Diuguid.
In the process it elevates itself above death and disease to become a veritable celebration of life and love. Powerfully original, it is also likely to change the way people think about the food they eat and how it is produced. This is particularly important given the ever increasing prevalence of cancers.
The art of death
Dance Me to the End of Time has been enjoying a successful festival run after premiering at the Encounters documentary festival in South Africa and has won several internationalawards.
The documentary fits into a genre of film-making which focuses on disease, dying and death. This genre was popularised in the early 1990s by films which documented the death of people living with AIDS. These are films such as Silverlake Life by US director Tom Joslin and Modesty and Shame by French writer and photographer Hervé Guibert. I argue in an article on this genre that there is something more to such films than just the representation of diseased bodies and slow deaths.
Dance Me to the End of Time shows how two women face the presence and reality of death. Diuguid thinks through how, although she was losing control of her body, she still wanted to be “present in the process of dying”. Chait contends with the idea of losing her loved one. She expresses her helplessness in offering the comfort that her dying lover required:
It felt like I was playing God: deciding what to do, when. Nancy was so unlike the Nancy I had known. I only wished I could do better with the process of knowing how to comfort and help ease her anguish.
Despite the difficult conversations they have about death and the meaning of loneliness, it’s fascinating how the film eloquently demonstrates that even in the face of death, the couple was able to experience happiness. In many instances, Diuguid is filmed swimming in the ocean or dancing with their adopted son, Desmond. This film is a beautiful ode to lesbian love, an elegy of two women loving one another through sickness and health.
Ecological and feminist politics
Chait also weaves into this personal story the important feminist and ecological work that the couple did to expose the health dangers of pesticides. When diagnosed with cancer, Diuguid decided to adopt a holistic, integrated medical approach combining traditional medicine and natural methods.
The story of US scientist and ecologist Rachel Carson is woven into that of Chait and Diuguid. From as far back as the early 1960s, Carson had exposed the health hazards of pesticides, especially DDT, used to spray farm crops. Diuguid grew up on a farm in Kentucky and experienced how small wildlife would be killed days after the spraying of their farm.
Diuguid and Carson both died of cancer. By drawing parallels between their lives, the film highlights the politics of what and who is responsible for causing cancer. In its focus on the gruesomeness of the effects on cancer, Dance Me to the End of Time is itself political in dealing with ecological questions and the impact of pesticides.
The film also shows how, when Diuguid was diagnosed, she was able to use the creative arts and her lesbian identity as tools to campaign for justice and to heal others. Through an initiative called VOICES, she used expressive arts to help women and children deal with trauma in the townships of Johannesburg. In addition to the historical trauma of apartheid, townships in South Africa have had to do contend with high levels of intimate forms of violence.
Vulnerability and dignity
Even in chronicling Diuguid’s dying, the film does not rob her of her dignity and humanity.
In fact, the film celebrates her life and her important work in expressive arts therapy.
In its personal and deeply emotional texture, Dance Me to The End of Time offers a sincere depiction of how to face death and more importantly how to live life to its fullest.