When my good friend, Nikki, told me a few days ago that her father had just passed away from natural causes, my first reaction was to offer sympathy. Then I asked, “What are the funeral arrangements?”
Her answer: “I’m not sure. We will have a memorial service, but we don’t know when. This pandemic is kind of getting in the way.”
Well, yes, it is.
Nikki and I are part of a group of friends who met playing tennis over 20 years ago. We’ve celebrated and helped each other over the years, through marriages, births, divorces and deaths.
But after Nikki’s response, I was stumped. How was I going to support her through the grieving process, when there was no memorial and when we were all supposed to be practicing “social distancing?” I reached out to experts to get some ideas.
The New Rules of Gathering
David Kessler, a Los Angeles-based authority on grief and founder of Grief.com, is in a similar situation. Someone he knows recently died. “This is a strange new world of grief,” he says. “If we can’t gather for a funeral, mourning gets very complicated.”
In the blink of an eye, the world’s burial rituals — which have traditionally helped people through the grieving process — have changed. Italy has banned traditional funeral services. Countries around the world (including the U.S.) have suggested limits on the amount of people attending services.
People over 60 may have the toughest time attending funerals of family members or friends. The U.S. Centers for Disease Control and Prevention (CDC) has recommended that those at a serious risk of COVID-19 avoid gatherings of 10 or more, and older people are at highest risk. Some funeral directors, including Virginia Kerr Zoller, co-owner of Kerr Brothers Funeral Homes in Lexington, Ky., are already suggesting that people’s older relatives stay home, according to a recent article in the Lexington Herald-Leader.
James Olson, funeral director of Olson Funeral Home and Cremation Service in Sheboygan, Wis., and a spokesperson for the National Funeral Directors Association, notes that Wisconsin’s governor declared that no gathering be larger than 10 people. This seems to be the most common suggestion around the country. But, as Olson notes, this could change daily or even hourly.
Matt Levinson, president of Sol Levinson and Bros. Funeral Home, serving the Jewish community in Baltimore, says they are still conducting burials quickly (as commanded by Jewish law), but are recommending that only the immediate family of 10 people or less attend. The funeral home is also offering the option to conduct the memorial service at a later date.
Levinson and his team are offering comfort the best way they can during this time — by alleviating some of the worry of gathering.
“Funeral arrangements are made over the phone, chairs are continually sanitized and spaced farther apart at the cemetery, and gloves are used for people who want to use a shovel to place earth in the grave,” he says.
Levinson also notes that he is working hard to keep his staff healthy. He has them working in shifts, not only to protect them from infection, but also to give them time off to handle the daily demands of this crisis.
One thing that hasn’t changed: informing friends and family about a recent death through phone calls, texts, newspaper obituaries and in Facebook posts. What’s missing are funeral arrangements, and details about gatherings such as shivas, where, in the Jewish tradition, loved ones and friends get together at a home for a week after the burial to support the family of the deceased.
Phone Calls Are Important
So if we can’t mourn together in person, how do we offer comfort?
“We aren’t able to hug, and physically connect, so we need to rely on using our words,” says Kendall Kridner-Protzmann, a pastor of congregational care at St. Andrew United Methodist Church in Highlands Ranch, Colo.
Kridner-Protzmann suggests calling mourners frequently. “Reach out through phone calls, and leave a message if necessary. Even just saying ‘This is really hard,’ is very healing.”
“When you can’t be physically present with a grieving loved one, you can still offer your emotional presence,” says Kelila Johnson, founder of Communing with Grief in Seattle. “There is solace in sitting quietly with someone, even if it’s over the phone or a video call. Often what grievers need most is to know that they don’t have to speak but that they are safe to speak, if they wish.”
Kessler suggests that in the first week after someone has passed, check in with loved ones multiple times. “If the person is in tears for an hour, you probably need to call daily,” he says. “If the mourner says that things are okay, you can probably check back in a couple of days.” He also strongly recommends calling instead of texting, and using FaceTime or Skype, to create a visual connection.
Technology Can Help
When you can’t gather in person, technology offers opportunities to comfort:
Live streaming, which has been available for long-distance loved ones to view funeral services for many years, is now a necessity.
Social media is also helpful. “I’m usually not a big fan of Facebook,” says my friend Nikki. “My sister suggested we announce my dad’s passing on it, and I was floored by the comments we received.” Not only did Nikki receive hundreds of condolences, but she also heard from people from her childhood who shared stories about her father. “It was the greatest thing to hear from so many people. It really made me feel better,” she says.
Other Ways to Show You Care — In Person
I also learned four creative ways to get out and about to support those who are grieving.
Visit the grave. Just because you weren’t able to go to the burial, that doesn’t mean that you can’t go to the cemetery. “Any time after the burial, and while cemeteries are still open, you can go to the gravesite on your own, or at a distance from others, and pay your respects,” says Olson. Letting loved ones know you did this can offer comfort.
Bring food. “When you go food shopping, buy a bag of fruit for your friend, and drop it off,” says Kessler. “You don’t even need to go in the house.” Does your friend have a favorite restaurant? Order takeout, and deliver it.
Walk together — at a distance. Exercise is important to our mental and physical help at any time, but especially when grieving. “If you live nearby, offer to go for a walk with your friend,” suggests Dave Wyner, psychotherapist and certified grief counseling specialist in Louisville, Colo. “Make sure to follow health experts’ advice on keeping your distance. It might feel a little weird to walk that far apart from each other, but it can still feel incredibly supportive to the person grieving. It really comes down to helping them know they’re not alone with their pain.”
Volunteer. Obituaries often list charities you can donate to in someone’s honor. “Why not volunteer for that charity, by helping them out in person?” suggests Olson. He gives an example of The Humane Society. Instead of donating money (or in addition to it), you could offer to walk dogs, in the name of the deceased, he says. This is needed all the time, but now, it may be especially helpful.
How I’m Helping My Friend
Now that I’ve learned how to provide solace and love to those grieving during the pandemic, I’m planning to reach out to Nikki more often by phone. I will give her space to talk and I will listen.
I’m also going to offer to take a walk or a bike ride together (at a distance, of course). And I’m going to ask her what type of meal she and her family would like me to deliver.
The bottom line: We’re all struggling during this health crisis, but people mourning the deaths of their loved ones really need our support. While you may not be able to offer comfort through traditional grieving rituals, I hope these suggestions can help in a time when it is so needed.
A footstone lies in a secluded section of the woods west of downtown Harpers Ferry, W.Va. Amateur historical researcher Bonnie Zampino says she believes the site is a forgotten Civil War-era cemetery.
The neglected plot of land in the woods of Harpers Ferry, W.Va., may hold remains dating to the Civil War era
It was last summer that Bonnie Zampino first noticed something unusual about the wooded plot of land in the hills above this historical town.
Zampino, a case manager for recovering drug users who lives in the neighboring community of Bolivar, was used to encountering curiosities from the past on her hikes through Harpers Ferry, a town where history has left its imprint several times over. The village overlooking the Shenandoah and Potomac rivers is most famous for the failed anti-slavery raid led by abolitionist John Brown in 1859. It was also the site of a Civil War battle and hosted large contingents of Union and Confederate troops.
Zampino, 50, had made a hobby of her interest in abandoned rural properties, taking photographs and researching old land records. But the lonely section of woods to the west of Harpers Ferry’s historical downtown and national park were unlike anything she’d seen before. Thin, jagged slabs of stone stuck up in rows. There were bathtub-size depressions in the ground — what Zampino would later learn can be a sign of settling graves. A small, white footstone sat unsteadily in the earth, like a loose tooth.
She set out to learn more about the town-owned property. Records were scarce, but after months of archival sleuthing, Zampino developed a theory that this section of woods is a forgotten remnant of some of the nation’s darkest and bloodiest days. She thinks she has discovered a lost graveyard of Union dead.
Her hypothesis, at this point, is only that. Even if soldiers’ remains are buried at the site, the number of bodies is uncertain. Zampino’s detective work has been complicated by confusing and sometimes contradictory records from the years immediately after the Civil War, a time when many of the corpses left behind by America’s deadliest conflict were disinterred and — at least in the case of federal troops — moved to special resting places.
But Zampino has uncovered compelling documentary support for further investigation, including National Park Service and military records — some dating back 150 years — that point to a soldiers’ cemetery at the location in question and suggest it fell into neglect not long after the war ended.
“Whoever’s here, I’d like to know,” she said, standing at the site in Harpers Ferry on a recent afternoon. A narrow lane of cracked pavement runs through what Zampino believes to be the old cemetery. The ground was covered in matted leaves and fallen branches. “This shouldn’t look like this,” she said.
The roots of the mystery Zampino has been trying to solve lie in a largely forgotten epilogue to the Civil War. The American military has long prided itself on the faithfulness with which it recovers the remains of those who die in conflict. After the war’s end in 1865, that endeavor took place on a huge scale, with federal officials fanning out to battlefields to retrieve the bodies of soldiers, sometimes in advanced states of decomposition. Those remains were reburied in new national cemeteries.
The job, while harrowing, was deemed essential by the government and welcomed by relatives of the fallen.
“Words fail to describe the grateful relief that this work has brought to many a sorrowing household,” wrote David Wills, a lawyer who led the effort to create the Gettysburg National Cemetery.
John Frye, a local historian and curator of the Western Maryland Room at the Washington County Free Library in Hagerstown, Md., said it was unlikely that the federal government could have overlooked a sizable number of bodies in Harpers Ferry during its retrieval efforts. Zampino said she believes anywhere from dozens to several hundred soldiers may have been interred at the site based on records she has reviewed.
“I can’t imagine the United States of America letting 300-some graves of Union soldiers go unmarked,” Frye said in an interview.
Zampino has gotten used to skepticism — or plain confusion: At the outset of her research project last year, most people seemed unaware that bodies had ever been buried at the site she discovered. “The more I couldn’t get information, the more I was like, ‘Man, I want to figure this out,’” she recalled.
She eventually discovered a 1959 National Park Service report that identified the plot as Pine Grove Cemetery, established in or around 1852. The report stated that “the cemetery was used as a burial ground during the Civil War.”
At the National Archives, Zampino discovered letters between military officials from 1866 to 1869 that discuss a “Citizens Cemetery” — separate from the other known cemeteries in Harpers Ferry — that she believes to be Pine Grove. An 1866 quartermaster general’s report says the cemetery “contains a number of soldiers graves, said to be not less than 75” that are “not distinguishable from citizens graves.”
Some of the stones Zampino says she believes were part of a wall surrounding the now-forgotten Pine Grove Cemetery in Harpers Ferry, W.Va.
Even then, however, confusion reigned over what the graveyard held.
In 1867, a military officer, responding to a request that the cemetery walls be rebuilt to protect the commingled grave plots of soldiers and civilians, replied that “all the bodies of U.S. soldiers interred at Harpers Ferry” had already been moved to Winchester National Cemetery in Virginia. Military records of the war dead from the time state that hundreds of soldiers’ bodies were moved from Harpers Ferry to Winchester between 1866 and 1867, but they are vague about what cemetery they came from. Zampino said they might have come from the more famous and centrally located Harper Cemetery.
At this point, Zampino said, the only way to resolve the questions raised by the documents is to conduct a physical examination of the site for graves and human remains. To that end, she is hoping to work with the Harpers Ferry Historic Landmarks Commission to apply for a grant that would fund ground-penetrating radar.
“I think it’s worth pursuing,” said Deborah McGee, the commission’s chairwoman.
If such research confirms the presence of soldiers’ remains, the National Cemetery Administration said, it “stands ready to provide government-furnished markers and/or grave space in a national cemetery.”
Whatever the outcome, Zampino said, she believes that after a century and a half, it’s time to solve the mystery of who rests in Pine Grove cemetery.
“There are people here,” she said. “And nobody knows who they are.”
The bones of a Neanderthal’s left hand emerging from the sediment in Shanidar Cave in northern Iraq, is seen in an undated photo.
By Will Dunham
A Neanderthal skeleton unearthed in an Iraqi cave already famous for fossils of these extinct cousins of our species is providing fresh evidence that they buried their dead — and intriguing clues that flowers may have been used in such rituals.
Last week, scientists said they had discovered in Shanidar Cave in the semiautonomous Kurdistan region of northern Iraq the well-preserved upper-body skeleton of an adult Neanderthal who lived about 70,000 years ago.
The individual — dubbed Shanidar Z — was perhaps in his or her 40s or 50s. The sex was undetermined.
The cave was a pivotal site for mid-20th-century archaeology. Remains of 10 Neanderthals — seven adults and three infants — were dug up there six decades ago, offering insight into the physical characteristics, behavior and diet of this species.
Clusters of flower pollen were found at that time in soil samples associated with one of the skeletons, a discovery that prompted scientists involved in that research to propose that Neanderthals buried their dead and conducted funerary rites with flowers.
That hypothesis helped change the prevailing popular view at the time of Neanderthals as dimwitted and brutish, a notion increasingly discredited by new discoveries.
Critics cast doubt, however, on the “flower burial,” arguing the pollen could have been modern contamination from people working and living in the cave or from burrowing rodents or insects.
But Shanidar Z’s bones, which appear to be the top half of a partial skeleton unearthed in 1960, were found in sediment containing ancient pollen and other mineralized plant remains, reviving the possibility of flower burials.
The material is being examined to determine its age and the plants represented.
“So from initially being a skeptic based on many of the other published critiques of the flower-burial evidence, I am coming round to think this scenario is much more plausible and I am excited to see the full results of our new analyzes,” said University of Cambridge osteologist and paleoanthropologist Emma Pomeroy, lead author of the research published in the journal Antiquity.
Scholars have argued for years about whether Neanderthals buried their dead with mortuary rituals much as our species does, part of the larger debate over their levels of cognitive sophistication.
“What is key here is the intentionality behind the burial. You might bury a body for purely practical reasons, in order to avoid attracting dangerous scavengers and/or to reduce the smell. But when this goes beyond practical elements it is important because that indicates more complex, symbolic and abstract thinking, compassion and care for the dead, and perhaps feelings of mourning and loss,” Pomeroy said.
Shanidar Z appears to have been deliberately placed in an intentionally dug depression cut into the subsoil and part of a cluster of four individuals.
“Whether the Neanderthal group of dead placed around 70,000 years ago in the cave were a few years, a few decades or centuries — or even millennia — apart, it seems clear that Shanidar was a special place, with bodies being placed just in one part of a large cave,” said study co-author Graeme Barker, a University of Cambridge archaeologist.
Neanderthals — more robustly built than Homo sapiens and with larger brows — inhabited Eurasia from the Atlantic Coast to the Ural Mountains from about 400,000 years ago until a bit after 40,000 years ago, disappearing after our species established itself in the region.
The two species interbred, with modern non-African human populations bearing residual Neanderthal DNA.
One in every five Americans now lives in a state with legal access to a medically assisted death. In theory, assisted dying laws allow patients with a terminal prognosis to hasten the end of their life, once their suffering has overcome any desire to live. While these laws may make the process of dying less painful for some, they don’t make it easier. Of the countries that have aid-in-dying laws, the U.S. has the most restrictive. Intended to reduce unnecessary suffering, the laws can sometimes have the opposite effect.
My work as a medical anthropologist explores the field of medicine from a cultural angle, focusing primarily on birth and death. Over the past four years, I’ve studied how access to a medically assisted death is transforming the ways Americans die. I have spent hundreds of hours accompanying patients, families and physicians on their road to an assisted death. And, I have witnessed some of these deaths firsthand.
This research has taught me one thing: An assisted death is not the path of least resistance. For many, it is the path of most resistance. Those who pursue it face a range of barriers, at a time when their health is rapidly declining. Some patients navigate these waters successfully and manage to secure the coveted bottle of life-ending medication. Others give in to the opposition or simply run out of time.
History of the laws
The country’s first right-to-die law, Oregon’s Death with Dignity Act (1994), came after a fierce, century-long struggle to give terminally ill patients access to some form of medical assistance in dying.
Legislators in Ohio and Iowa proposed the first two of these bills in 1906. Known as the “chloroform bills,” they envisioned the use of chloroform on fatally ill or injured patients to induce their death, but their terms were so flawed that they never saw the light of day. Other legislative bills – introduced in Nebraska in 1937, Florida in 1967 and Idaho in 1969 – met similar fates.
When a committee of lawyers, physicians and activists sat down to craft Oregon’s Death with Dignity Act in 1993, similar ballot initiatives had recently failed in Washington (1991) and California (1992). To appease vocal opposition, lawmakers laced the Oregon statute with a long list of restrictions and safeguards.
Unlike all previous proposals, the Oregon measure no longer allowed for euthanasia. That’s the act of injecting a patient with a lethal dose of narcotics. Under the law, patients would have to ingest the lethal dose themselves – a final protection meant to ensure the absolutely voluntary nature of their death. The act also introduced a 15-day waiting period between a patient’s first and second request, intended as a period of reflection.
It worked. Oregonians narrowly approved the measure, but a three-year legal stay prevented it from being enacted. In 1997, Oregonians reaffirmed their support for the act, and it became law. Since then, each state that has added an assisted dying law to their books has either followed the strict Oregon model or, in the case of Hawaii, added more constraints. Those include requiring a mandatory mental health exam and a 20-day waiting period in between requests.
The letter of the law
Unlike other countries that permit assisted dying, such as Canada, the Netherlands and Belgium, in the U.S. intolerable suffering and an incurable medical condition alone are not enough to qualify someone for an aided death. A patient must already be within six months of the end of their life – coinciding with the admission criteria for hospice. That means protracted degenerative diseases with open-ended prognoses like amyotrophic lateral sclerosis (ALS) don’t usually qualify, at least not until a patient’s breathing becomes severely compromised.
Every year, dozens of eligible patients who apply for an assisted death are so close to the end of their life that they die during the mandated waiting period. And by the time a patient becomes eligible for an assisted death, they may have missed the window when they are able to ingest the lethal medication. In contrast to their Canadian, Dutch and Belgian colleagues, American physicians cannot administer these drugs to their patients.
Lou Libby, a pulmonologist from Portland, Oregon, told me that the physical manifestations of many advanced neurodegenerative diseases bump up against this requirement. Again, consider ALS. Alongside their diminishing ability to breathe, patients with ALS almost always lose their ability to swallow.
“You have to be able to ingest the medication yourself. And here you have all these patients who can’t even swallow.”
As I learned during my research, the stress over their ability to swallow can provoke a great deal of anxiety in patients, particularly when it comes to correctly timing their death. Taking the medication too early means cutting short a life still worth living; waiting too long means possibly missing their chance. To have the kind of death they prefer, some patients choose to die earlier than they would have liked.
Cultural roadblocks
Despite popular backing for medical assistance in dying – seven in 10 Americans support it – the cultural stigma and moral ambivalence around these laws remain potent. Across the country, many religiously owned health systems decline to participate in their state’s assisted dying law.
In rural parts of Oregon and along the coastal corridor, where Catholic health systems often run the only hospital in town, patients routinely struggle to find two physicians who will approve their request, or a pharmacist who will fill their prescription. Many hospices refuse to cooperate with a patient’s desire to seek an assisted death, leading patients to feel abandoned. Many assisted living and nursing facilities still prohibit the practice under their roof, forcing patients to make alternative arrangements, sometimes at a nearby motel. In trying to reclaim control over the way they die, these patients often are being stripped of some of that control in the process.
Medical aid-in-dying will become an even bigger issue as baby boomers face the end of their lives. It is mainly older patients who want access to an assisted death. In Oregon, for example, nearly 80% of those who sought medical assistance in dying in 2018 were 65 or older. Boomers, as in many other aspects of their lives, likely will want more say over their deaths.
Assisted dying reframes how we, as a society, understand the potential of medicine, not as a way to extend life but to mitigate the process of dying. Patients who endure intractable, painful diseases sometimes reach a moment when the prospect of staying alive feels worse than the prospect of dying. At that point, the idea of having a say over the timing and manner of their death can bring enormous comfort. But few are aware of all the hurdles they must clear to exercise this kind of control.
Tom was only forty when he arrived at Hospice Buffalo with end-stage AIDS. Unlike most of my patients, he was not surrounded by loved ones. Not a soul came to visit, ever. He was rather stoic, so I wondered if the absence of visitors was his choice rather than an indicator of his loneliness. Maybe that was his way of refusing to give death an audience.
I was puzzled but, wanting to respect his privacy, did not inquire. Tom’s emaciated body showed traces of once-chiseled muscles. He had kept fit and was still quite young, which gave me hope. In light of his age and physical conditioning, I thought that his body would be more likely to respond positively to life-prolonging treatment. Not long after he was admitted, I went to the nurse’s station and decreed, “I think we can buy Tom some time. IV antibiotics and fluids should do it.”
The charge nurse, Nancy, had been at Hospice Buffalo for much longer than I had. She knew her job, and everyone looked up to her. She was also not one to mince words. Still, her response took me by surprise: “Too late. He’s dying.”
I said, “Oh really?”
She replied, “Yep. He’s been dreaming about his dead mother.” I chuckled awkwardly—equal parts disbelief and defensiveness. “I don’t remember that class from medical school,” I said.
Nancy did not miss a beat. “Son, you must have missed a lot of classes.”
I was a thirty-year-old cardiology fellow finishing my specialty training while working weekends at Hospice Buffalo to pay the bills. Nancy was an exceptional veteran nurse who had limited patience for young, idealistic doctors. She did what she always did when someone was out of their depth—she rolled her eyes.
I went about my business, mentally running through all the ways modern medicine could give Tom another few weeks or even months. He was riddled with infection, so we administered antibiotics. Because he was also severely dehydrated, I asked for a saline drip. I did all I could do as a doctor to prolong his life, but within forty-eight hours, Tom was dead.
Nancy had been right in her estimation of where he was on the downward slope. But how could she have known? Was it just pessimism, the numbing effect of having watched so many people die? Was she truly using a patient’s dream as a predictor of life-span? Nancy had worked in hospice for more than two decades. She was tuned in to aspects of dying I knew nothing about: its subjective dimensions. How patients experienced illness, particularly dying, had mostly been ignored throughout my training as a doctor.
Like many physicians, I’d never considered that there might be more to death than an enemy to be fought. I knew about blind intervention—doing everything possible to keep people conscious and breathing—but had little regard for the way any given individual might wish to die, or for the unavoidable truth that ultimately death is inevitable. Because it had not been part of my medical education, I failed to see how the subjective experience of dying could be relevant to my role as a doctor.
It was ultimately the remarkable incidence of pre-death dreams and visions among my dying patients that made me realize how significant a phenomenon this was, both at a clinical and a human level. As a hospice doctor, I have been at the bedsides of thousands of patients who, in the face of death, speak of love, meaning, and grace. They reveal that there is often hope beyond cure as they transition from a focus on treatment to notions of personal meaning. As illness advances, grace and grit collide and bring new insight to those dying and their loved ones, insight that is often paradoxically life-affirming. This experience includes pre-death dreams and visions that are manifestations of this time of integration and coming into oneself. These are powerful and stirring experiences that occur in the last days or hours of life and that constitute moments of genuine insight and vivid re-centering for patients. They often mark a clear transition from distress to acceptance, a sense of tranquility and wholeness for the dying. Patients consistently describe them as “more real than real,” and they are each as unique as the individual having them.
These end-of-life experiences are centered on personal histories, self-understanding, concrete relationships, and singular events. They are made of images and vignettes that emanate from each person’s life experiences rather than from abstract preoccupations with the great beyond. They are about a walk in the woods relived alongside a loving parent, car rides or fishing trips taken with close family members, or seemingly insignificant details such as the texture or color of a loved one’s dress, the feel of a horse’s velvety muzzle, or the rustling sound of a cottonwood’s shimmering leaves in the backyard of a childhood home. Long-lost loved ones come back to reassure; past wounds are healed; loose ends are tied; lifelong conflicts are revisited; forgiveness is achieved.
Doctors owe it to their patients to incorporate this awareness into our practice. End-of-life experiences ought to be recognized as evidence of the life-affirming and inspiring resilience of the human spirit that drives them. They are proof of humanity’s built-in, natural, and profoundly spiritual capacity for self-sustenance and self-healing, grace and hope. They help restore meaning at end of life and assist in reclaiming dying as a process in which patients have a say. They also benefit those left behind, the bereaved, who get relief from seeing their loved ones die with a sense of peace and closure.
This subjective experience of dying is also a powerful reminder that beauty and love in human existence often manifest themselves when we least expect it. The patients who summon up comforting processes at life’s end are beset by symptoms of a failing body over which they have limited control. They are at their most frail and vulnerable, existing within suffering states of aching bones and hunger for air. Catheters, IVs, and pills may now be part of their every day, sometimes literally functioning as extensions of their bodies under the daily medical management that is their new and irreversible lot. They may experience various degrees of cognitive, psychological, and spiritual dissonance. Yet even as the inexorable march of time is taking its toll on their bodies and minds, many also have pre-death dreams and visions in the context of which they display remarkable awareness and mental sharpness.
Herein truly lies the paradox of dying: patients are often emotionally and spiritually alive, even enlightened, despite a precipitous physical deterioration. The physical and psychological toll of dying may be undeniable, but it is also what makes the emotional and spiritual changes brought about by end-of-life experiences border on the miraculous. Doing justice to end-of-life experiences means accounting for this paradox, one in which death and dying transcend physical decline and sadness to include spiritual awakening, beauty, and grace. Or, as the title character in the acclaimed Tuesdays with Morrie puts it, “Aging is not just decay, you know. It’s growth. It’s more than the negative that you’re going to die.” This is also true of the dying process, which often functions as a summing up, culmination, and capstone, an opportunity to recognize and celebrate our humanity in all its complexity and dignity rather than just as an ending.
After Robert Alexander died at 51 during heart surgery in June 2018, after he was taken from the hospital to the facility that would recover the tissue and bone he had donated, he was brought to his uncle’s farm in Hinton, Okla., where his six siblings, his mother and other family members and friends had gathered to give him a home funeral.
They laid him out on a sturdy folding banquet table and dressed him in well-worn bluejeans, a Harley Davidson bandanna, a long-sleeved Affliction T-shirt and his black leather vest painted with the American flag. On the wall behind him, they hung a blanket emblazoned with a flaming skull.
A mechanic, Mr. Alexander had loved motorcycles, though his health and finances had kept him from being a regular rider. After he was properly adorned, and “looking pretty badass,” as his sister Tawnya Musser said, his siblings and their mother gathered around him, and a brother-in-law took a family photo using his smartphone.
“We couldn’t think of a time when all of us had been together with Mom,” Ms. Musser, 34, said. “So we had the conversation. Did Mom want a photo with all seven of her children and was it morbid that one of them was dead?”
There ended up being several photographs. They are startling and beautiful. Mr. Alexander looks peaceful and regal. The siblings have shared them among themselves, but the images don’t live on social media, as many contemporary death photos do.
In a collision of technology and culture, of new habits and very old ones, we are beginning to photograph our dead again.
For families like Mr. Alexander’s who are choosing home funerals and following natural death practices — D.I.Y. affairs that eschew the services of conventional funeral parlors — photography is an extension and celebration of that choice.
Family members are sitting with kin in hospice, or taking them home from hospitals, and continuing to care for them after they die, often washing their bodies and then adorning them, as Mr. Alexander’s family did, with favorite clothes, flowers, cards, books and other totems. They are sending their dead off as their grandparents used to, and recording the event and its aftermath with their smartphones.
“You can die in a way that has beauty attached,” said Amy Cunningham, 64, a funeral director in Brooklyn who specializes in “green” burials, without embalming or metal coffins, and assists families who are caring for their dead at home.
“The photograph seals the emotion,” Ms. Cunningham said. “And with cellular phones ever-present, we’re going to be recording all kinds of things we never did previously. Death is just one of them. Though when you’re Facebook posting and the images are wedged between the latest Trump atrocity and cats who look like Hitler it can be jarring.”
So, too, is the now common experience of seeing emoji applied to tragic events. Do you choose the weeping smiley face or just hit “like”?
The End of the Timeline
When Louise Rafkin posted a photo of her mother, Rhoda Rafkin, on Facebook the night of her death at 98 in September with her golden retriever at her side, it rattled some family members and friends.
Ms. Rafkin, 61, an author and martial arts teacher in Oakland, Calif., who is also a contributor to The New York Times, described how she and others had carried Rhoda outside to the garden she had loved. They transported her on an improvised stretcher, a surfboard borrowed from neighbors, and with help from their college-age sons.
Rhoda was dressed in a blue caftan and strewn with sunflowers, roses and gladioli. They tucked her into a sheet, lit candles and sat with her until it was dark. It is a lovely image, shot at the magic hour, as filmmakers like to say of the time just before dusk, but it shocks nonetheless.
“I was crazy about my mom and I wasn’t fazed by her being dead,” Ms. Rafkin said, noting that Rhoda, an educator, had been in hospice for more than six months. “I’ve been through the AIDS epidemic. I’m used to death. There are ways you can make this meaningful. Although I’m not religious, I am a deep believer in ritual and how that can heal and provide context.”
The Facebook post was a way to announce Rhoda’s death, Ms. Rafkin said, adding, “I’m pretty sure my mother would have disapproved, and that’s a tad unsettling. ‘No folderol,’ she said about the whole process.”
Some family members had mixed reactions. “I think what she did in the garden was beautiful,” said Ashley Peterson, 31, of Ms. Rafkin, who is her aunt. “But I felt like posting the photos could make people uncomfortable and leave an image in their minds they did not want to see. ”
Susan Sontag wrote that photography has its own ethics: It tells us what we are allowed to see and what’s taboo. (In the age of TikTok, these rules have evolved beyond all imagining.) If we are more familiar with the deaths of strangers, their violent ends captured by photojournalists, maybe that’s because the deaths of our intimates have been at a remove for so long.
There have been exceptions, of course, like the harrowing images that emerged during the AIDS epidemic from photographers like Therese Frare and artists like David Wojnarowicz, whose tender portraits of his friend and mentor Peter Hujar are holy-seeming and sacramental.
“In one sense it’s surprising because we’ve been so disconnected from death in the last century or so,” said Bess Lovejoy, the author of “Rest in Pieces: The Curious Fates of Famous Corpses,” published in 2013, of the resurgence of home death photography. Ms. Lovejoy is also a member of the Order of the Good Death, an organization of funeral professionals, artists and scholars that prepare a culture generally in denial about death.
“But we are returning to the older ways,” she went on, “a movement backward that some say began in the ’70s, with the back-to-nature movement and midwifery and natural births. The natural death movement is part of that. And these photos are unsurprising, too, because we carry our smartphones all the time, and it’s almost like if there isn’t a photo it didn’t happen. Now everyone is a photographer.”
A post-mortem portrait of a baby from the mid-19th century.
Modern photography was born in 1839, when Louis Daguerre refined a process for capturing an image on silver-plated copper. For decades, one of the most common uses of this new technology was the post-mortem photo: an artfully composed image, taken by a professional photographer, of dead family members in all manner of poses. Dead children in the laps of their parents, often with their eyes painted open; dead adults dressed in their finest clothes; even dead parents holding their living children; or entire families, wiped out by diseases like cholera, typhoid or diphtheria, nestled together in bed.
These were prized mementos, most often the only photograph that was ever taken of the subject, said Stanley B. Burns, 81, the quirky ophthalmologist behind the Burns Archive, a collection of post-mortem and medical photos, among other intriguing photographic genres, stored in a chockablock townhouse in Midtown Manhattan.
The photos in Dr. Burns’s “Sleeping Beauty” books (there are three) are both ghoulish and gorgeous. Dr. Burns pointed out that the subjects tended to look pretty good, because the plagues that felled them did so quickly.
The images have been inspiration and provided material for collectors and Victoriana enthusiasts like Joanna Ebenstein, 48, a writer and curator who was a founder of the idiosyncratic Morbid Anatomy Museum, now closed, in Brooklyn. “Post-mortem photographs can be seen as a Western form of ancestor veneration,” said Ms. Ebenstein, a practice that began to decline when death was outsourced to the clinical environments of hospitals and funeral homes, “and it became taboo to talk about.”
(In 1910, Ladies’ Home Journal rebranded the parlor, where Americans had been laying out their dead for nearly a century, as “the living room” and the nascent funeral industry took the word “parlor” for its activities.)
But what really curtailed post-mortem photography and the elaborate mourning rituals behind it, according to Dr. Burns, was World War I. “There was so much death,” he said. “If everyone is mourning, you lose your fighting spirit. It’s not patriotic.”
“What’s happening now is that people are taking back that process,” Dr. Burns continued. “But the impulse to photograph is the same as it was for the Victorians. They want to show they have seen their person through to the end. ‘I’ve done this work, I’ve loved her to the end.’ It’s your last bond, and you want to document that.”
Finis-tagram
As the funeral industry slowly evolves from Big Casket to include a cadre of overwhelmingly female and digitally native professionals with all manner of titles (end of life teachers, death doulas and others), they are displaying their work, with humor and photographs, on social media.
Their message: Get comfortable with death, it doesn’t have to be so scary, and here are photos to prove it.
They share images of the dead attended by family members in their beds, or shrouded in natural fabrics cinched with rope at a grave site. They perform death themselves, as Melissa Unfred, 41, a natural mortician based in Austin, Texas, sometimes does, lying in shallow graves strewn with flowers and turf. Ms. Unfred, who sells “Cremate the Patriarchy” T-shirts on Etsy, is the Mod Mortician of Twitter and Instagram, one of many evangelists for the so-called Death Positive movement.
Caitlin Doughty, 35, a funeral director who describes herself as a mortician activist and funeral industry rabble rouser, recently re-enacted a Victorian-style post-mortem photo shoot with a tintype photographer at the Merchant House Museum in Manhattan, and shared it on YouTube.
Ms. Doughty is the founder of the Order of the Good Death and the author of “Will My Cat Eat My Eyeballs?” published last September, “Smoke Gets in Your Eyes and Other Lessons from the Crematory” and other jauntily titled books designed to demystify death. With her Bettie Page crop, she is an avatar of the goth-inflected sub-tribe of death professionals.
“It’s not like no one never took a photo of Mom in the coffin,” Ms. Doughty said. “I have pictures of my grandparents in their caskets fully embalmed. But the sense of ownership has changed. It’s not, ‘Mom is handed to the funeral parlor and they do something behind the scenes and sell the body back to you.’ Sure, you could take photos but it’s like a statue in a museum. The product of someone else’s art. My sense of why we are seeing more and more photos of these natural bodies is because the families have prepared them themselves, they’ve done a job together and they are proud of their work.”
Ms. Doughty advises families on home death rituals and best practices, like how to keep the dead cool with packs of dry ice. “One family texted me photos as they worked, though not to say, ‘How are we doing?’ but, ‘Look how beautiful.’ I think people have this fear that Mom is going to be this otherworldly creepy thing, and then when that doesn’t happen, they want to capture it.”
Ms. Cunningham, the funeral director in Brooklyn, recalled addressing a group of Unitarians in Albany a few years ago, and saying that she wasn’t sure she would want to be viewed, post-mortem, by her friends and family. That she would prefer to be looking her best. A nonagenarian yelled out, quite sharply, as she remembered, “‘You’ll get over that!’”
“And that got me thinking,” Ms. Cunningham said. “Wouldn’t it be wonderful to die unfettered and free from worrying about how I look?”
Remembrance Portraits
Cancer patients and others with terminal illnesses have long used photos and videos to bear witness to their suffering and make visible that which is considered off limits — on blogs, Twitter and now TikTok — and have encouraged family members and friends to do so on their behalf when they are no longer able to, pushing visual and emotional boundaries well beyond what may be considered comfortable.
As in the Victorian era, post-mortem photographs of children have a terrible urgency and mission. Now I Lay Me Down to Sleep is an organization of volunteer photographers who make “remembrance portraits” of babies, often of the child in their parent’s arms, to assist in the grieving process.
Oliver Wasow, a photographer, recalled the agonizing images a friend shared last summer of her son’s death to cancer at age 8 on Instagram and Facebook, documenting her child’s devastating decline, and then her own grief.
It was shattering to see — “You couldn’t ‘like” the photos,” Mr. Wasow said — but he recognized the value it had for his friend. Some people, he noted, say the difference between analog photography and digital photography is that digital photography is a kind of activity, versus analog photographs, which are documents.
“When you throw in social media, it becomes a record of a process rather than a record of a person. Yet the purpose remains the same whether it’s the 19th century or the 21st,” Mr. Wasow said. “It’s about documenting the transition from a physical body to a memory.”
There are gentler ways to memorialize the process of dying than a portrait of a face with the life drained from it. Lashanna Williams, 40, a massage therapist and death doula in Seattle, has been making portraits of her dying clients, with their permission, to share with family members if they ask for them.
She captures the area between a forefinger and thumb, or the calluses of someone’s hands. Wrinkles, she likes to say, are containers for memories and lived experience. She may take a photo of the crepey skin on an arm, or a scar, and sometimes she layers those images with photo collages made from leaves or flowers. The images are both abstract and intimate.
The aesthetic and language of modern post-mortem photography is not all fabric shrouds and flower petals, however. Monica Torres, 42, is a desairologist (the term for hair and makeup stylists who work on the dead) and embalmer in Phoenix with a sassy Twitter handle, @Coldhandshosts. Her specialty is trauma, and she relies on conventional methods to make decedents look like themselves again.
“I cannot create a positive, lasting memory for families without the chemicals and tools that I use,” Ms. Torres said. The families of her clients often ask her to take photos, or gather at a coffin for a selfie, she added.
An educator, she also shares her work in vivid photos on her website. “Now that the death-positive movement is in full effect,” she said, “families are beginning to show interest, and documenting their journey through grief is a powerful tool to use toward acceptance. We want to empower families with education about what it is we actually do and how our dark art is valuable.”
Bam Truesdale, 37, a hair and makeup stylist in Charlotte, N.C., has been preparing decedents for funeral parlors for 10 years. When his mother, Cynthia Cummings, died at 61 in 2016, he worked on her, too. As is his habit with all the people he prepares, he put earphones in his mother’s ears, and played her gospel music, though he worked in silence.
After Mr. Truesdale had made his mother up and done her hair, pinning a white feather and rhinestone fascinator to her curls, he smoothed her dress, adjusted her stockings and picked her up, placing her gently in her coffin.
He captured the entire process with his Android phone, though when he paused to kiss her face all over, as he used to do when she was alive, the colleague he’d brought from work to help him if he faltered took the phone from him and snapped those photos herself. Afterward, he uploaded the images to a Google drive and did not look at them again until the last week of January.
“I started feeling emotional that day,” he said, “and something in my head told me, I think it was her, that I had never shared her like she asked me to.” When Ms. Cummings was dying, she made Mr. Truesdale promise that he would make sure no one would forget her. Mr. Truesdale said, “I was going back and forth, ‘Maybe I should? Maybe I shouldn’t? People are going to think I’m weird.'”
It was evening when Mr. Truesdale posted his dead mother’s photos on Facebook. He awoke the next morning to find his phone lit up with thousands of comments and notifications. Many people asked if he could make the post public, so he did. By the end of the day, 25,000 people had “liked” the post, and it had been shared more than 15,000 times.
Among the more than 4,000 comments, the most common were that Ms. Cummings looked beautiful, and that Mr. Truesdale had done a wonderful job caring for her. Strangers wrote that they wished they could have had a similar experience with their own family members.
His three siblings thanked him, too. “They didn’t know they wanted to see the pictures,” he said. “But they did.”
