Category: Talking about death

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‘It was kindness and it was a mercy’:

The doctor helping people to die

Oncologist Cameron McLaren

By Melissa Cunningham

It was just after 2pm on October 31 when oncologist Cameron McLaren arrived at Phil Ferrarotto’s house on the outskirts of Melbourne to help him die.

Dr McLaren had never administered a fatal drug to a terminally ill patient before. He was struck by the magnitude of what he was about to do.

“I had no idea if I was going to be OK with it even up to the point where I put the needle to his arm,” Dr McLaren said. “But there was no question that this was the right thing to do for Phil. It was what he wanted. It was kindness and it was a mercy.”

Phil hadn’t eaten for days. No longer able to digest his medication, the 70-year-old was hooked up to an intravenous morphine drip and sustained by spoonfuls of cola-flavoured ice.

He lay in bed with his daughter Katie and wife Dorrie curled up on either side of him. They cuddled his frail body and watched his chest rise and fall with each painful breath.

His son Glen and son-in-law Ryan came into the room with three glasses of aged Glenfiddich whisky; one for each of them and one for Phil.

They toasted Phil as Dr McLaren gently swabbed the father-of-two’s arm with medicinal alcohol.

Phil Ferrarotto

Dr McLaren found a vein and inserted a cannula. He used the thin tube to inject a sedative medication, before administering an anaesthetic and a muscle relaxant.

Phil began to drift off within minutes of the drugs flowing into his bloodstream. The circle of his family closed in around him. They held his hands and told him how much he was loved. “Be happy,” Phil said, before he took two final, deep breaths.

Dr McLaren has helped two dozen terminally ill Victorians apply for permits to end their lives since the state’s voluntary assisted dying laws came into effect on June 19. Eleven of them have since died using the legislation.

All the patients Dr McLaren has assessed so far were in intolerable pain and often bedridden.

“The number one reason people are doing this tends to be more the existential suffering,” Dr McLaren says. “It is the loss of joy, the fear of losing dignity and the fear of losing autonomy and of being a burden to family.”

Cancer-stricken patients surrender their bodies to years of treatment they know will cause them pain and discomfort, Dr McLaren said. He wants to give people control at the end of their life.

“It is one last decision about their body which is entirely theirs,” he said. “This is something we do for animals and when they get too old and they are suffering greatly. We put them out of their misery and we call it humane. Why shouldn’t we afford humans the same humanity?”

When Dr McLaren first met Phil he was sitting in an armchair in his living room hooked up to an oxygen concentrator. The cancer had spread from his bladder to his lungs and had riddled his bones. Then it invaded his liver, causing his belly to swell and fill with fluid. Opioids prescribed to Phil did little to dull his pain. Each breath was agony.

This kind, strong-willed, clever, retired general manager, who had battled four different kinds of cancers over the past 18 years, was frank and direct.

He told Dr McLaren he wanted to end his own life.

Dr McLaren carefully assessed Phil. He ticked off all the strict criteria; over the age of 18, of sound mind, an Australian citizen with less than six months to live. He referred Phil on to a second doctor who also deemed Phil eligible for the scheme.

Before his application was approved an email from Phil arrived in Dr McLaren’s inbox: “This gives me no pleasure in begging you to end my life, but I have no one else to turn to. I’m struggling with every breath I take and I can’t do it anymore.”

A permit for a doctor-administered death was approved the same day by the Voluntary Assisted Dying Board with Dr McLaren agreeing to administer the fatal dose.

For days after Phil died, Dr McLaren was waiting for the “hammer’s fall”.

“I was really concerned about the fallout for me, personally and emotionally,” he said. “I was concerned about being recognised as ‘that’ doctor and the impact it might have on my family and my work.

“I didn’t question what I did, because in Phil’s case, he was in the last days of his life and he was going to die within 48 to 72 hours. I was able to provide him a death that in his mind was dignified. It didn’t cost him anything. It cost him his suffering.”

The fallout never came.

“It was a lonely experience because there’s no literature review you can read on it,” he said. “It still does feel lonely because there’s not a lot of us doing it.”

The night Phil died, Dr McLaren picked up his two year-old daughter when he got home and held her in his arms. His love for his child overwhelmed him and he pressed his face against hers.

“As I was holding her I thought of Phil being surrounded by his family as he took his final breath,” he said.

“Nothing that we could have done would have avoided his death, but we were able to make sure Phil  died at home in the arms of the people who loved him most. I thought, yeah, that would be a nice way to go.”

Before he died, Phil wrote a letter to Dr McLaren thanking him for what he was doing:

Complete Article ↪HERE↩!

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To Die Is Different From What Anyone Supposed

Art, philosophy and mortality.

By Joseph Kugelmass

At an overlooked moment in his Essays, Michel de Montaigne writes that “life itself is neither a good nor an evil; life is where good or evil find a place, depending on how you make it for them.” Yet it’s hard for anyone to reckon, before the point is moot, how much good and evil one life shelters in its span. No matter what we do while we’re alive, there’s plenty that we leave unfinished, or that we gape at while it goes awry. There are mistakes that we still might have enough time to mend. Hamlet got it backwards: it’s not death, but life, that “puzzles the will” with its ironies and uncertainty.

Every now and then, however, people manage to outlive themselves. Convicts serving life sentences do, for example, which is why “Folsom Prison Blues” is such a savage, luminous song. Mortally ill people sometimes end up in an equally uncanny position. Leo Tolstoy’s character Ivan Ilych, on his deathbed, glimpses the ugly truth of his life: “It occurred to him that what had formerly appeared completely impossible to him, that he had not lived his life as he should have, might be true. It occurred to him that those barely noticeable impulses he had felt to fight against what highly placed people considered good, barely noticeable impulses which he had immediately driven away—that they might have been the real thing, and all the rest might have been not right.”

Russian literature is full of people like Ivan. Prince Myshkin (in Fyodor Dostoevsky’s novel The Idiot) eventually realizes that “for a long time now, he had not been talking about what he needed to talk about, and had not been doing what he needed to do.” The horror of this realization breaks his spirit, and he succumbs to seizures and catalepsy, dead to the world. A quieter storm breaks over Lambert Strether’s head in The Ambassadors, by Henry James: “I’m too old…What one loses one loses; make no mistake about that. Still, we have the illusion of freedom; therefore don’t, like me to-day, be without the memory of that illusion.”

Outcries of regret like these carry an emotional charge for us, the audience, that can be hard to explain. Is the finality of death, prison, or old age really profound just because—to quote Michel Houellebecq—the goal of life’s been missed? Critics have spent their whole lives on the works of Henry James only to conclude that “the idea of ‘too late’” was some kind of regrettable obsession on James’s part (see, e.g., Berthold 1983). After all, the curtain does have to fall, sooner or later.

Fortunately, these epiphanies that reach us from death’s farther shore aren’t really bemoaning lost opportunities. Instead, they are bits of fire carried down from those Olympian peaks where life appears as it really is: a frenzied circus of petty motives, bootless efforts, and misunderstandings. Death is the greatest moral agent in all of life. It boils each individual down to her most generous acts; nothing else survives. We are the sum of our gifts to the people who will outlive us. Thus it does matter what a dying man decides to regret. His regrets, useless to him, are the bitter correctives that we survivors may choose to adopt.

Literature’s stuffy cousin, philosophy, is always playing a game of death. The philosopher tries to abstract truths about life from human experiences, impartially, as if she hadn’t lived them herself. Baruch Spinoza famously wrote that philosophy should consider the world sub specie aeternatis, “from the perspective of eternity.” Erasmus, in The Praise of Folly, paints a vivid picture of Menippus (who, supposedly, lived on the moon) doing just that: 

“If a man like Menippus could look down from the moon and behold those innumerable rufflings of mankind, he would think he saw a swarm of flies and gnats quarreling among themselves, fighting, laying traps for one another, snatching, playing, wantoning, growing up, falling, and dying. Nor is it to be believed what stir, what broils, this little creature raises, and yet in how short a time it comes to nothing itself; while sometimes war, other times pestilence, sweeps off many thousands of them together.”

It’s a comical picture, but there’s a great deal of forgiveness in it as well. When it’s our turn to die, there’s no longer any reason to stay angry at people who loved us, or cheated us, or whom we envied. Recrimination and bitterness lose their impetus. The facts of life don’t alter just because we die; if we lived forever, we’d still behave like idiots from time to time. But the fact of death, seen clearly and steadily, drags many other things with it into the light. At the moment of his death, when he’s murdered, Lester Burnham (in American Beauty) “can’t feel anything but gratitude for every moment of my stupid little life.”

Philosophy as we know it began when Plato sat down and tried to make sense of the murder of Socrates; the vicious Athenians who killed him to preserve their monopoly on morals become, in The Republic, simple cave-dwellers frightened of sunlight. Their cruelty is pardonable blindness; in order to write about the death of Socrates, in a fashion that honored his greatness, Plato had to make peace with his teacher’s executioners.

We tend to think of “objectivity” as a cold, rational perspective that doesn’t take sides on questions of morality. We associate it with empirical observation and scientific testing. That’s a tremendous misunderstanding. To be objective is to grasp something as a whole. It lays bare the threads that connect a senseless murder in Reno with a “fancy dining car” on a passing Folsom train. It’s realizing, as Plato did, that Socrates couldn’t have become so widely known and admired in a city less dangerous to him than Athens. It means remembering, like Ivan Ilych, the impulses towards something better that one felt, repressed, ignored, all for the sake of a life not worth living in the first place.

Walt Whitman wrote, in his “Song of Myself,” “to die is different from what anyone supposed, and luckier.” For, as he says in the preceding line, “All goes onward and outward, nothing collapses.” To see that, instead of just divining and proclaiming it, is the work of philosophers: those few who teach themselves to die with eyes open.

Complete Article ↪HERE↩!

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Vancouver photographer offers solace to those dealing with death

Grief Narratives website allows users to reflect on the end of days

Josh Neufeld documented his father’s death through a series of photographs called “Meeting Mortality.”

By John Kurucz

Josh Neufeld has a special affinity for turkey necks.

It’s not that they taste particularly good, nor were they a staple on his plate since childhood.

Neufeld’s late father Dietmar loved the neck. It was his go-to whenever turkey was served at a holiday meal.

Dietmar died in September 2015 after a brief battle with cancer.

Thanksgiving dinner that year was the first family gathering after Dietmar’s death.

“I sat in his spot and in his honour, I ate the whole neck and blubbered like a buffoon because it was like ‘OK, this is our life now,’” Josh recalled. “It’s four Christmases later, but still that feeling doesn’t change. It sucks.”

Outside of the culinary nod, Neufeld continues to pay tribute to his father in a manner that’s profoundly personal, yet completely universal.

Neufeld’s website Grief Narratives invites people the world over to share their photos, thoughts, feelings and emotions as they experience death in their own unique way.

The online platform has garnered interest across Europe and as far away as South Africa.

The site was born partly out of Neufeld’s experience photographing the end of his dad’s life, a project called Meeting Mortality.

Across roughly 30 photos, Neufeld documented the final 19 days of his father’s life in hospital.

“My dad never did see the photos, which really messes with my head,” said Neufeld, a professional photographer by trade.

Neufeld hatched the idea in the spring of 2015 upon visiting a dying relative in California. His uncle was simultaneously battling Parkinson’s disease and cancer and sat the roughly 50 family members down to prepare them for the end.

“You walk away from a conversation like that and you’re like, OK, that really realigns priorities and shifts perspective and helps you look at life a little differently,” Neufeld said.

Volunteering at a hospice was to be Neufeld’s next step but Dietmar fell ill before his son could find a volunteer placement.

Dietmar was diagnosed with pancreatic cancer on July 13 and died Sept. 9. He was 66. He was the department head of classical, near eastern and religious studies at UBC, an avid cyclist and loved taking the piss.

“Him and I would spend hours out by the fire chatting,” Neufeld recalled. “He could go deep about anything religious and he taught ancient Greek language. But then he could also sit there and shoot the shit about the most meaningless, stupid stuff.”

Documenting the end was done so with his Dietmar’s blessing. He also came up with the name “Meeting Mortality.” Neufeld discussed the idea with his mom and three sisters and got buy-in, though not totally.

“My oldest sister doesn’t really like to look at those photos,” Neufeld said. “But I think they just understood where it was coming from.”

Neufeld has since gone on to photograph the end of days for other families. Last year, he interviewed 22 people about their experiences confronting mortality, taking photos as they spoke.

He hopes to expand Grief Narratives into a multi-media platform where users can pay tribute to loved ones via text, photos, video and other media.

It’s a project not necessarily intended to normalize death, but to give community and a space to reflect for those who need it.

“I hope it becomes something people use and find value in,” he said. “I’m trying to show people that it’s an option. It’s not going to be for everyone.”

Neufeld’s work can be seen online at griefnarratives.com and joshneufeldphotography.com.

Complete Article ↪HERE↩!

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The struggle to create a new craft of dying

—what is medicine’s role?

By Richard Smith

“Lyn Lofland’s The Craft of Dying (1978) is one of the most important books on post WWII death and dying practices that almost no one has read,” writes John Troyer, director of the Centre for Death and Society at Bath University. He thinks that everybody interested in death and dying should read the book. I agree. Potentially that means that every human being should read the book—because who cannot be interested in death, arguably the most important thing about us. Plus The Craft of Dying is short, easily read, full of compelling stories, and constructs a clear argument.

“Death can neither be “believed” nor “magicked” nor “scienced” away,” writes Lofland in her first line. But we can’t stop ourselves from thinking about it: “Everywhere and always humans think about it and develop beliefs regarding it and produce emotions toward it and do things relative to it. What they think, believe, feel, and do is, of course, variant. But that they think, believe, feel, and do is a universal.”

Every culture has developed beliefs and customs around death, but human death, argues Lofland, has changed dramatically in the past 60 years. Until that time people died mostly of infectious disease and injuries. The period of dying was short, and it was clear when people were dead. Medicine had little to offer. Now people die mostly of chronic disease, and the length of dying is long. Death is not easily defined, and doctors have much to offer, including long term ventilation, heroic operations, and drugs, some of them extremely expensive.

“In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die,” writes Atul Gawande in Being Mortal, published in 2014. Lofland wrote something similar in 1978: “There exists currently no widely accepted, fully articulated, well-integrated dogma that gives ‘being dying’ its meaning or its place in the larger scheme of things.”

A cultural vacuum has been created, and inevitably attempts are underway to fill the vacuum. We have entered a new age of what Lofland calls “thanatalogical chic”: in the contemporary cliché “death is the new black.” We have to decide how to die, where to die, how to dispose of the dead, how to mourn, and, most difficult of all, what death means.

One response has been what Lofland teasingly calls “the Happy Death Movement.” It is an inchoate social movement with many practitioners, strands, and different views, but Lofland sees patterns that were emerging in the 70s and are still emerging.

Firstly, a social movement needs an enemy, and the enemy of the Happy Death Movement is death denial, death as the great taboo. Lofland defines the enemy: ”America is a death-denying society…death is a taboo topic…death makes Americans uncomfortable so they run from …death is hidden in America because Americans deny it….” For America, Lofland’s home, we could substitute any high-income country—or even any high-income group within a poor country. “The consequences of all this denial and repression are,” continues Lofland, “asserted to be quite terrible: exorbitant funeral costs and barbaric funeral practices, inhumane handling of dying in hospitals, ostracism of the dying from the living, inauthentic communication with the fatally ill, an unrealistic, mechanical, non-organic view of life, and so forth.”

Lofland is dismissive of the idea of death as taboo: “One might consider it somewhat odd that the statement that death is a taboo topic in America should continue to be asserted in the face of nearly a decade of non-stop talking on the subject.” Talk, writing, and storytelling about death has continued unabated ever since and probably increased. It is probably fair to say, however, that there is much less familiarity with the experience of death: dying people, the signs of death being close, dead bodies, and the disposal of the dead.

A social movement also needs something to shoot for, and for the Happy Death Movement it’s some form of idealised premodern death, with the dying person at home surrounded by loved ones and calmly bidding them goodbye. Lofland is dismissive of this as well, including in her book stories of the dying being buried alive (in Samoa) and ignored while families party (in Tahiti).

As you would expect, the attempts to create new behaviours and beliefs around death reflect broader cultural trends, which Lofland identifies in the United States as “ ‘humanistic-counterculture’ denouncement of modern society in general, which denouncement emphasizes the Western world’s dehumanizing, unemotional, technologically dominated, inauthentic, and constricted character.” That cultural trend is alive and flourishing in most Western societies. “Why not,” asks Lofland, “with Carl Jung, speak of “the achievement of death” and view dying as the final creative task of our lives?” A director of spiritual services (what used to be called a chaplain) I met recently in a hospice told me of the tremendous pressure on people to have a “good death.” This immediately evoked for me the pressure on mothers to have a “good” or “natural” birth.

Emphasising that the Happy Death Movement is still forming, Lofland identifies how the movement will make dying better. Firstly, it’s essential to talk about it. For example, the Order of the Good Death, an organisation founded by a Californian mortician, has eight tenets—and three of them concern talking about death

“2. I believe that the culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship.

3. I believe that talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition.

7. I believe that my family and friends should know my end-of-life wishes, and that I should have the necessary paperwork to back-up those wishes.”

Secondly, death must be rearranged, moved from hospital to hospices and the home. Death in hospital is failure. Thirdly, we must legislate death with advanced decisions and assisted dying.

Lofland also identifies emerging components of the new craft of dying. Expressivity is essential, but it’s also important to not just embrace death, but to celebrate it. (I’ve done this with my talk, delivered once at the Edinburgh Festival, “Death: the upside.”) Finally—and for me surprisingly—the Happy Death Movement wants us to believe in immortality. Lofland describes how Elisabeth Kübler-Ross, who might be called the doyen of the Happy Death Movement and whose hugely influential book On Death and Dying proposed in 1969 the five stages of grief (denial, anger, bargaining, depression, and acceptance), came to believe in immortality. The pursuit of immortality, long a dream and arguably the unique selling point of Christianity, now attracts serious people and serious money. 

The other two components of the emerging craft of dying are expressivity and positivity. Talk and write about your dying and coming death and celebrate your coming death and the death of those you love. New rituals will be needed, and some like “living funerals” are beginning.

Lofland is a sociologist, an academic, an observer, but you feel that she is not in fully sympathy with the Happy Death Movement. Indeed, she conjures the idea of a Dismal Death Movement to counter the Happy Death Movement: “If expressivity comes to be widely accepted as the only way to achieve a decent death, the emotionally reticent will find themselves under great pressure to ‘share.’ If the idea that death and dying provide new opportunities for self-improvement becomes common currency, the chronic under achiever will find himself facing one more opportunity for failure. Not ‘getting off’ on death may become as déclassé as sexual unresponsiveness. Then perhaps, a ‘dismal death’ movement will rise to wipe the smile from the face of death and restore the ‘Grim Reaper’ to his historic place of honor.”

There is a little about medicine and healthcare in Lofland’s book, and nor does the Order of the Good Death have much to say on the subject. But I wonder how much medicine and healthcare—gigantic, well-funded enterprises—might come to fill the need for new ways to die. Ivan Illich certainly argued that that was the case in his book Limits to Medicine, published at about the same time as Lofland’s book. Death “is now that point at which the human organism refuses any further input of treatment…Health, or the autonomous power to cope, has been expropriated down to the last breath. Technical death has won its victory over dying. Mechanical death has conquered and destroyed all other deaths.” Indeed, it is by taking on death that “health care has become a monolithic world religion.”

All those who read Lofland’s book agree that it could have been published in 2018 not 1978 and be equally relevant. The struggle to create a new craft of dying is far from over, and those of us in medicine and heath care have a particular responsibility to think and act on medicine’s role in the struggle. Almost certainly its role should be smaller.

Complete Article ↪HERE↩!

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Conversations change around death, dying and funeral planning:

‘It’s not going to bring on your demise any sooner’

By Quinn Ohler

Conversations around death and dying are changing, and those in the funeral industry say it’s the baby boomer population leading the charge.

“You used to just have four funeral homes and you could choose between one or two things, [and] everybody charged basically the same thing,” says Brandy Rollins, family service manager at Trinity Funeral Homes.

Many people are looking for more options in every aspect of funeral planning from cost, to service options and final dispositions.

You are now able to personalize every aspect of your service to include what is most important to you. There’s also several options when it comes to how to dispose of your body from a traditional burial, from casket and concrete linings placed in the ground to cremation.

There’s also a movement in support of what’s called green burials, which don’t use concrete liners or embalming. Bodies are placed in a biodegradable shroud or casket.

Because there are so many options, Rollins says it is imperative that people have conversations with their loved ones about exactly what they want.

“If you don’t know what is important to the person that you are ultimately responsible for, it’s a burden to decide that,” she says.

Rollins suggests pre-planning your funeral to make it easier on your family.

“It’s a very loving act [and] it’s a very kind act,” Rollins says. “Some would argue it’s the last act of kindness you can provide.”

There’s also a push to get more people talking about their own deaths, not just for pre-planning reasons.

Death Cafes are being held around the world. The creators of the pop-up events state on their website, Death Cafes are meant to “make the most of our finite lives.”

“It’s just an aspect of life,” says Gina Vliet who has hosted Death Cafes in Edmonton.

Vliet is a member The Order of the Good Death, which encourages “staring down your death fears.” She is also an advocate for death positivity.

“Our culture is focused on living and prolonging life,” Vliet says. “I think acknowledging mortality is something people come to very organically.”

Vliet encourages people to get over the “cultural taboo” of not wanting to talk about death and dying. She is an end-of-life planning consultant who helps people plan for the final stage of life .

Vliet says that planning for your death and talking about it gives you more freedom and energy to enjoy life.

“It’s not going to bring on your demise any sooner,” Vliet says.

Both experts agree that talking about your death or the death of a loved one is a very loving act for your family, even though it can sometimes be uncomfortable.

Complete Article ↪HERE↩!

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At this workshop, writing your own obit means analyzing your past — or future

By Liz Mayes

On a Monday evening in September, seven people gather at the Rhizome, a house that has been converted into a community arts space in the District’s Takoma neighborhood. They range in age from late 20s to early 70s, and come from an array of professions — nonprofits, woodworking, think tanks. They’re all here tonight for an unusual writing exercise: one where people — typically of the healthy, non-dying variety — hammer out the text for their own obituaries.

The group’s facilitator is Sarah Farr, 43, a trained death doula who provides companionship and guidance to the dying. In the spring of 2017, she formed Death Positive DC and began hosting regular events: “death cafes,” where people sit around and chat about death, often over cake; and obituary writing workshops like this one. (Death cafes are free or donation based; obituary writing workshops cost $10.) She also operates a Facebook group with about 600 members.

Farr opens the workshop by tracing the history of obituaries in American journalism and outlining their shifting cultural significance through major events such as the AIDS crisis and 9/11. She encourages the group to think about how the advent of social media and memorial websites like Legacy.com have changed the way deaths are reported. (She notes that two-thirds of people who die in America get a Legacy.com page.) She shares examples of funny, viral obituaries — one simply reads, “Doug died” — and dives into the ethics of adult children publishing unflattering obituaries of their parents.

She also brings up the role that race and gender have historically played in the obituary sections of prominent newspapers. She mentions the New York Times project Overlooked, which started in 2018 and features obituaries of women and people of color whom the newspaper neglected to write about when they died. (Entries include journalist and anti-lynching advocate Ida B. Wells, transgender activist Marsha P. Johnson and poet Sylvia Plath.)

Then, educated about obituaries and ready to craft their own, the participants are set loose. They wander to different corners of the house or outside to the porch — and they begin to write.

Obituary writing workshops are part of an expanding suite of events and activities that fall under the umbrella of the “death positive movement.” Based on the belief that cultural avoidance of discussing death is harmful, the movement encourages people to speak more openly about dying. It had been rumbling for several years before it gained a name and solidified into an official movement. In 2011, a man named Jon Underwood — who would later die at age 44 — held his first death cafe in his basement in London. He envisioned the meetings as a refuge from what he saw as a pathologically death-averse culture.

That same year, a mortician named Caitlin Doughty started a popular YouTube channel, “Ask a Mortician,” which she used to spread information about death acceptance and to combat death anxiety. It was Doughty who, in a tweet, coined the term “death positive” as a play on the phrase “sex positive.”

After Underwood and his mother published an online guide for holding death cafes, the idea quickly spread and was enveloped into the growing death positive movement. Since then, according to Death Cafe’s official website, there have been more than 9,700 death cafes held in 66 countries. Anyone can host their own death cafe, as long as they abide by the official guidelines set out by Underwood.

The movement is growing here in Washington as well. Farr has seen attendance at her death cafes rise markedly over the years. Her first death cafe, held in November 2016, saw about 15 attendees. Recently, her meetings have topped out at 50, even in the rain and during the cold winter months. She remembers that just two years ago, there were very few death cafes in the region. Now, the Death Cafe website lists up to four or five per month in the D.C. area.

After about 20 minutes, Farr calls the group back together. Attendees take their seats and Nadia Raikin, 60, volunteers to share what she’s written. As she reads, her dry, cool humor is palpable: “Well. I am dead now. But at least I lived for a while, which is better than nothing.” She pauses to smile as a chuckle goes through the room. “But I’m happy I got to experience life and that my mom, upon blessings of my grandma, decided to keep me. I was born out of a force of nature. I guess I died when nature or God called me back.”

An older man named Chris is next. “Chris lost his life in a car accident on November 1st, 2020, nine days before his birthday. He was 75,” he says as the others listen attentively. Tall with gray hair, he speaks in a gentle, straightforward voice, sketching out the story of life, marriage and work.

“He was a humorous, easygoing man who drank a little too much but never caused any trouble when the drink got the better of him. He always felt intense empathy with the underdogs of the world, which he felt a member of. But he was happy and comfortable with this identity.” He stops reading abruptly and looks up from the page. “Anyway, blah, blah, blah. What did you all think?”

After a few more people share their obits, the group breaks for another round of writing. For the middle-aged and younger participants, writing their own obituaries can be a forward-looking exercise. Jill Eckart, 40, says, “I took it as an opportunity to create what might be possible in the next half of my life. I have about hopefully 45 to 50 more years left. With the end in mind, what do I want that space to look like?”

By now, the sun has set behind the apartment complex across the street. Seated on the old wooden porch, Carter Rawson, 50, speaks of how the impulse to document his life seems to come naturally to him. “I’m biased because I’m a historian,” Rawson says. “I like to read about a life well-lived.” He continues: “I’m not the most interesting person in my family, and I’m never going to be. But if you go to a yard sale and see disembodied old pictures, you wonder what their lives were about. I just felt I would want to do someone the favor of actually giving a narrative — being that one photo that had a story taped to the back of it.”

“I loved it,” Farr says. “I think it could be a great jumping-off place for a memoir.”

Complete Article ↪HERE↩!

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‘I’ve been saying goodbye to my family for two years’

Last year the author wrote about parenting with motor neurone disease. Here, he reflects on the end of life, before his death two weeks ago

Joe Hammond with his wife, Gill, and sons Jimmy (left) and Tom in 2018.

By Joe Hammond

In the beginning I was just a dad who fell over a bit and then couldn’t drive the car. Then we had a name for what was happening to me: motor neurone disease. The rest of my physical decline has taken two years and I now write with a camera attached to a computer, which tracks reflections from my pupils. I can use the same device to talk with my synthetic voice. It’s obviously slower to use, and has trained me to get to the point, in much the same way that dying has.

In the room next door, as I write, I can hear Jimmy, my two-year-old son, offering to take passengers on a bus ride to various destinations. It’s half-term and Tom, my seven-year-old, has wandered out into the garden. He’s smiling, looking back at the house, as he points out a squirrel to someone standing inside. There’s adult laughter, too. I can hear Gill, my wife, talking with one of my carers.

I’m in an adjacent downstairs bedroom, suspended in a sling that hangs from the ceiling hoist. It’s positioned over a bedpan, and my floppy neck is wedged upright between a pillow and a piece of foam. I usually stay here for a while because it also has a view of the garden. It’s gusty and leaves are twirling down from an ash tree.

I realise I’ve been saying goodbye to my family for two years. Always imagining this version of myself, without a voice or moving parts. But now I’m here, I can see that we’re all just interested in the same thing: how anxious all these squirrels are as they bury their treasure in the turf. How they keep looking back over their shoulders. And how life just carries on, until it doesn’t.

There was a moment halfway through my decline when Tom needed to check whether he would die one day. He was wrapped in a blanket on my lap as I confirmed its inevitability. He sobbed and I pulled the sides of the blanket in around him. After a few moments his tears came to an end, and five minutes later he was upside down on the sofa giggling at his toes.

Children walk past spiders’ webs all the time and see little things dying. Death is all around them; they know this better than their parents, who have often forgotten. I know I had. But children haven’t reached this stage yet. Death and dying can be known. It doesn’t stop them laughing at a fart or making an empty crisp packet go pop.

Jimmy was at my bedside a few mornings ago dispensing imaginary ice-cream. I was staring upwards, and I could hear him low down to my right. I opened and closed my mouth to show that I was eating some of the “[va]nilla” on offer but, silent and motionless, I don’t know if he noticed, and then I heard him padding away into the next room.

I can’t be active in the life of my children. I have to see what the day brings. There was the moment last week when Tom rested his cheek into my upper arm, gently twisted the top of his head upwards against my flesh like a nestling cat, then twirled away. It was a moment that must have lasted five seconds at most but I kept it with me – held on to it – for days, as if I wasn’t just making contact, but taking an imprint.

I owe these moments to materials that are both plastic and hollow. To an expanding network of tubing crisscrossing my body: transparent blues and yellows, concertinaed or smooth. The largest gauge of tubing has the central importance of the eastbound M4 heading into London. This is the one swooshing air and oxygen into my lungs, but there are other tiny subcutaneous tubes more like narrow Cornish lanes, trickling a minuscule palliative cocktail just under the skin of my bicep. The other key thoroughfare is the one delivering sticky beige nutrition through a macaroni-sized tube running directly into my abdomen.

Tubes are now a way of life and, with so many doctors and nurses coming and going, there’s plenty of spare tubing lying around. This place is like a fisherman’s cottage but with coils of plastic everywhere – in wicker baskets or hanging from hooks. A lot of it ends up in the bath with my two boys. Or it becomes part of Jimmy’s marching trumpet band.

When I was diagnosed, my heart broke in different ways, but some of those feelings have softened. It was always the tiny pieces of future that hurt. I’d imagine Gill and Tom and Jimmy unloading shopping, or just being listless together on a Sunday.

But I’m very still with this disease now: I’m an observer, sensing lives happening in other rooms. I hear bottles and cans rattling in plastic bags. I see the rain at three o’clock on a Sunday. All this detail goes by or around me and I see it working. I see three people moving and turning together – and it’s no longer breaking my heart. It’s just sad and comforting. I didn’t expect the end of my life to feel like the future.

Hammond and his family at home last month.

I see and hear my family clowning around and I want so much to be in there with them – teaching my children to brush their teeth in the style of a camel. Instead I’m unnaturally still – observing the way their bodies move to express or receive humour. The way a back curves, or a head is thrown back. Watching hands thrust out wide, or even the opposite of such movements. All the infinite expressions. But I’m not clowning around any more; I just see it going on – how ornate it is, how beautiful.

Other losses are simpler and more incremental. Sometimes they are nothing more than adaptation and sometimes, like the loss of my voice, they are devastating. I lost my swallow very quickly. There was a three-week period when Gill made sure I had lots of really nice soups, and that was it. Food was a thing of the past. I’ve never got over that loss.

I’m fortunate that my ventilator filters out the aroma of most foods, replacing them with a smell like the inside of a plastic bucket. Occasionally smells get through, like roast lamb or the mist that comes from Tom peeling an orange, but mostly I’m assailed by food memories. The most recent is of the yellow Styrofoam containing takeaway from a Lebanese restaurant. Other food memories are more permanent and catastrophic, and these are all the foods I ever made or shared with my young family.

When the boys are in bed, Gill climbs up on to my hospital bed and sometimes falls asleep. It can feel like I’ve been waiting the whole day for this moment. Watching Gill asleep always feels like such peace to me, and some of this article would have been written with Gill by my side in that way.

It’s really hard to cry when you rely on a mask for air. I use a mask that’s attached to my nose, so when I cry my mouth stretches wide open and all the valuable air gusts out, like a badly insulated letter box. And the camera I use to communicate can’t track the progress of my pupils, so crying is a form of incapacitation. It’s so much easier for Gill, who can stretch out on the bed and sob without any of these secondary difficulties. It’s not that we’re always crying together. It just happens sometimes. Recently Gill’s been reading to me from old travel diaries, written in the days before we had children. Stories of mountains and recklessness on motorbikes, other countries. The past feels so luxurious.

But now it’s the present. It’s all been leading up to this. Sad but no longer broken. Here with Gill. It’s a magical kind of sadness, saying goodbye. A bit like preparing to travel again, but no longer together.

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