A woman on TikTok wasn’t afraid to show her death.

In the process, she helped others live.

By Alia E. Dastagir

In a TikTok video on August 25th, Kassidy Pierson, who had been using the platform to document her life with terminal cancer, told followers she was hopeful it would be a good day. She spent the previous one nauseous, sweating and lethargic. But she was better on this day, and remarked how lovely the weather felt, and how she wished others could feel it, too. She told her followers she wouldn’t be posting every day. That wasn’t realistic anymore, she said.

The video was Pierson’s last. On September 9th, Pierson’s older sister Kasey Metzger posted from her account telling her more than 200,000 followers that the 27-year-old had died.

“I can’t tell you the amount of times that she would just break down crying because she couldn’t believe how many people just loved her from this platform,” Metzger said. “Thank you so much for all that you’ve done for her.”

Pierson, who was diagnosed with melanoma six years ago, used her popularity to raise awareness about skin cancer, but her earnestness, quirkiness and vulnerability made her account more than advocacy. Pierson, whose username was @ohhkayypee, offered a window into what it looks like to die – the grief and regret, the insistence that life isn’t over until it is.

She posted intimate videos – of the tumors protruding from her small frame, on her decision to enter hospice, on how she talked to her son Hunter, 8, about the inevitability ahead. In the process, she developed a captive community that watched with curiosity and awe as she lived the final days of her life.

“We need to know our life matters and we want our life, our death and our grief witnessed,” said David Kessler, grief expert and author of “Finding Meaning: The Sixth Stage of Grief.” “Our worst fear is dying alone. We always wanted someone at our bedside – to know someone will be there. … What’s new is the Internet.”

People want to be seen – in life and in death. The short-form video app TikTok offers users an unexpectedly intimate space to navigate and narrate experiences with terminal illness, which grief experts say offers myriad benefits to people on both sides of the screen. The hashtag #terminalillness has nearly 40 million views on the app.

The person posting acquires social connection, which science shows may allow them to live longer. And the audience is encouraged to confront existential fears, to develop empathy, and even to reflect on how best to live – in the face of imminent death and especially absent it.

‘We don’t really address death very directly’

People grapple with death’s unknowns in a number of ways, made all the more difficult by Western cultures that sanitize death or hide it, said Pamela Rutledge, an expert on the psychological and social impact of media and technology. The invisibility of death exacerbates fear.

A century ago, Kessler said, death was visible. Grandchildren watched their grandparents die at home. When he was a boy, Kessler remembers being on his way to school and seeing hearses on the street.

“Now the dead move around our cities in white unmarked vans,” he said. “If you want to see death now, you’ve got to see it in a movie or online or on a TV show.”

Like Pierson, many TikTok accounts are offering a raw look at dying, the way its nearness clarifies the preciousness of life. Many encourage followers to take care of their health. Some accounts are intimate, others more humorous.

User @solelenaq& ;shared her perspective on appreciating each day: “If I don’t make it I just want to say, ‘live your life.'” User @kora_the_herbivora shared a video of how overwhelmed she became by something that before her cancer diagnosis may have gone unmarked – the sensation of warm sun on her skin. User @pheovsfabulous posted a video about how she spent her life’s savings when she was given a year to live, only to outlive the prognosis.

Pierson’s mother, TK Dunn, said she’s glad her daughter uncloaked her own experience with death, especially how ambigious it can be. Pierson never really knew how much time she had left.

“There was this roller coaster of, ‘Am I going to die now? What does that mean? Who do I turn to?'” Dunn said. “Our culture doesn’t normalize conversations about death. Death happens. We act like it doesn’t. If we can start demystifying it, maybe these events wouldn’t be so jarring or traumatic.”

‘One of the biggest ways people matter is through personal connection’

The Internet may be making death visible again, but it also offers something to the dying – the ability to connect. To matter widely.

“One of the biggest ways people matter is through personal connection,” Rutledge said.

Research shows people with strong social connections may live longer, healthier lives. Conversely, people who are isolated face a 50% greater risk of early death.

“The ability to connect with people – to have that level of feedback and that level of support can be very positive emotionally,” Rutledge said.

The desire for connection goes both ways. Pierson’s audience was likely captivated because they craved connection, too, Rutledge said. And Pierson gave them that – often telling followers how grateful she was for their support, how much they meant to her.

“If the person who’s going through this, the person who’s dying, is thanking you for your attention and your participation in their journey, then you’re establishing … a parasocial connection in the sense that these people don’t know each other but become emotionally invested, just like you would with any narrative.”

These narratives also offer people fearful of death an alternative to the most terrifying story they tell themselves about how they would cope. Everyone makes up stories, consciously or not, about what they might do when death is close.

“You wonder how you would deal with your erasure,” Rutledge said.

‘It psychologically feels like it prepares us’

Kessler said he believes every fear we have connects back to a fear of death. But that fear isn’t productive. Fear doesn’t stop death, he said. It stops life.

Accounts documenting terminal illness allow people to confront their fears. To go to the edge in a safe, observing way.

“It psychologically feels like it prepares us, or it lets us know when our worst fear happens, we might be OK, too,” he said.

In the final weeks of Pierson’s life, she had family time, wrote in journals to her son, did a ride-along with the police department and sat in a private jet. She reminded her followers not to “be stupid” and to get their skin checked. She cheered on thwho heeded her advice.

“I would like to take you guys as far as I can on this journey with me. I’d like you guys to all see it and experience it and learn,” she said in a video on August 11th. “You’re not alone. … We’re doing this together.”

Complete Article HERE!

You Can Feel Anticipatory Grief Before a Loss

—Here’s How to Cope

Anticipatory grief is not only possible, but common and normal.

By Sara Gaynes Levy

Grief is easily one of the most complex human emotions. Experiencing grief can mean intense sadness, rushes of anger, periods of numbness, difficulty focusing, and more—and it all comes and goes in waves that can last for years after a loss. While we traditionally associate the feeling with the death of a loved one, we experience grief for all kinds of things— periods of time that are coming to a close (like a baby’s newborn phase or graduating from college), relationships that have ended, or places that no longer exist as they once did. No matter what causes grief, it is a hard feeling to sit with. And, notably, the loss doesn’t have to have happened yet to cause these grief-fueled emotions—you can feel something called anticipatory grief as well.

What is anticipatory grief?

Anticipatory grief is grief for an ending we know is coming, but has not yet occurred. “We would say it is the grief that starts any time we’re aware that a death or another type of loss is imminent,” says Litsa Williams, MA, LCSW-C, co-founder of whatsyourgrief.com. “It doesn’t have to be short-term—it can be a long-term thing—but it starts when we have awareness.

Anticipatory grief is different from post-loss grief because the loss isn’t concrete yet, so there is guesswork and questioning happening in our minds. “Our brain is trying to imagine what the world will look like and feel like after this loss occurs, which is, of course, very different from living in the reality of the loss,” says Williams. So the approximation may not be close to how the loss really plays out, as grief is such an incredibly complex emotion. “Grief is so different for each person, whether it’s pre- or post-loss,” says Kriston Wenzel, LBSW, CT, a grief specialist at the Hospice of Red River Valley in Fargo, N.D.

Why do we experience anticipatory grief?

Anticipatory grief is hard, but it is not without purpose. For those who experience a sudden loss, they haven’t been able to “plan” (so to speak), or process, for the way their life changes in the same way that someone who’s sat with anticipatory grief has. “With anticipated losses, we can imagine that this person won’t be able to fill the spaces and roles we’ve gotten used to having them in, and we can think about what we will do and how we will fill these spaces,” says Williams. (This goes for other types of losses as well, not just deaths.) “Unexpected losses are far more destabilizing because we haven’t been able to accommodate the possibility of loss,” she explains.

However, it’s a common misconception that anticipatory grief somehow eases or lessens the feelings of grief when the loss does occur. “People will think they have emotionally prepared themselves because they have imagined the loss, but what happens is usually the opposite. They realize it’s different or worse than they envisioned,” which can be difficult, says Williams. Wenzel recalls a friend whose husband died of Lou Gerhig’s disease after a long battle with it: “She told me [near the end of his life] ‘I’ve already grieved. I’m done. I feel like I’ve gone through everything I have to.’ And then he died. She called me and said, ‘I guess it wasn’t quite that easy, was it?’ None of us know what we’re going to feel.”

What are the signs of anticipatory grief?

While anticipatory grief precedes post-loss grief, the signs and feelings are very similar: bouts of crying, anger, anxiety, depression, fear, and poor concentration can all be indicators you’re experiencing this feeling. You may not even be able to make the connection yet between your feelings and the grief you’re experiencing. It can sometimes be a more abstract connection than with post-loss grief, since it can be harder to let yourself admit that grief is what you’re feeling when the loss hasn’t occurred.

“And anticipatory grief may not mean you are feeling sad about the death specifically,” says Wenzel. “It can also be sadness about the fact that you’re never going to get to do something with that person again, or sadness about the first wedding anniversary without them [on the horizon].” Anticipatory grief can also cause intense feelings of guilt, explains Williams. “People often feel like they should be maintaining hope at all times, and it can feel like a betrayal of that hope if we’re starting to imagine the world without that person,” she says. But it’s important to understand that it is not—all of these feelings are very, very valid and normal.

How can you cope with anticipatory grief?

First, don’t beat yourself up. “You can feel two things at once! You can be hopeful and still be realistic,” says Williams. “Anticipatory grief doesn’t mean you’ve given up.” And that means letting yourself really feel the grief. Even though it’s painful, trying to avoid it will only make it more difficult in the end.

“Try to create a space for this grief,” says Williams. “A lot of people find it really helpful to set ‘grief time’ aside and write in a journal, create art, or just spend time with that person.” Creating this space can not only help you avoid feeling numb or disconnected, it can also help if the opposite is true, when the grief seems overwhelming. By setting aside time to experience your feelings, says Williams, if you feel a wave come over you at work, you can acknowledge it while remembering you’re going to give yourself time to journal about it that night. “Having a space set aside helps you feel some sense of control—something we don’t have much of when we’re grieving,” says Williams.

You can also work on your grief “plan,” so to speak, says Wenzel, if you’re the kind of person for whom that would be healing. “Start thinking: What are your plans? How are you going to honor this person’s life? People feel like it’s going to be so hard, I don’t know what I’m going to do, I’m not going to be able to get out of bed. But if you can reframe it in the sense of ‘what are you going to do to honor the life that they lived?’, that can be very helpful for people,” she says.

These kinds of questions can also be helpful if you’re anticipating the grief of an upcoming move, a pet, or even a part of your life. “Loss is something we all have to face, whether it be the loss of a relationship or friends or jobs or money,” says Wenzel. “Grief is grief. But if we can face it in a way that’s more positive, it might not be as overwhelming to us.”

Complete Article HERE!

Africa’s religious traditions: In praise of the ancestors

Animism and its veneration of the ‘dear departed’ have a human scale absent from the ‘great’ faiths. Drew Forrest makes the case for Africa’s religious traditions.

Egungun spirits perform during a Voodoo ceremony on January 11, 2012 in Ouidah, Benin. The Egungun are masqueraded dancers that represents the ancestral spirits of the Yoruba, a Nigerian ethnic group, and are believed to visit earth to possess and give guidance to the living. Ouidah is Benin’s Voodoo heartland, and thought to be the spiritual birthplace of Voodoo or Vodun as it known in Benin. Shrouded in mystery and often misunderstood, Voodoo was acknowledged as an official religion in Benin in 1989, and is increasing in popularity with around 17 percent of the population following it. A week of activity centred around the worship of Voodoo culminates on the 10th of January when people from across Benin as well as Togo and Nigeria decend on the town for the annual Voodoo festival.

By Drew Forrest

Those who stayed away when Geoffrey Oryema headlined at Womad in Benoni in 2000 – the poor turnout spoke of South Africa’s cultural isolation – missed more than a luminous musical performance.

At the height of his powers the “Orpheus of Acholiland” made a compelling statement about the continent’s religious beliefs.

At the age of 24 Oryema was smuggled out of Uganda in the boot of a car after his father, a cabinet minister, was denounced as a plotter and murdered by Idi Amin. Geoffrey did not return for 39 years.

Hence the persistent note of sorrow in his songs: since Ugandan independence, the Acholi minority he sprang from has been trapped in endless cycles of regional and ethnic violence.

In this land of Anaka [his father’s ancestral village]… we had dreams of a clear, green land… /Dead sand, dead sand,” he lamented on his first album, Exile.

Central to Oryema’s performance on the Womad night stage were the songs of his magisterial fourth album, Spirit. Released in France the previous year, it revolved around the death of his father, Erinayo… 

Late in the evening I walked down
Down by the river
Plunging my hands in the water
I felt the spirit moving
The spirit of my father protects me
Guides me
                                 (“Spirits of my Father”)

… and of his brother, John, who died during Geoffrey’s exile:

I can hear your voice
From a distant place
Among the flowers and grass
I can hear your steps beneath
The stone…

                                  (“Omera John”) 

In “Save Me” we meet the same idea: to a repeated, hypnotic motif the song tells of a man who, in a dream or trance, falls under the paralysing thrall of a star. He calls out to the sun and the moon, who come to his aid.

This is animism, the belief, pervasive in Africa, that the cosmos teems with innumerable spirit beings that share human concerns and can be harnessed to the human project.

The result, wrote the originator of the term, anthropologist Edward Burnett Tylor, was a vision of “universal vitality” whereby “sun and stars, trees and rivers, winds and clouds become personal animate creatures”.

“The whole psychic atmosphere of the African village is filled with belief in this magical power,” wrote the father of African theology, Kenya’s John Mbiti, who described Africans as “notoriously religious”.

It is a noble idea, simpler and more dignified than the esoteric contortions of Christian theology and better suited to an age when people are striving for a new relationship with the natural world.

An ‘Egungun’ spirit stands during a Voodoo ceremony on January 11, 2012 in Ouidah, Benin.

Animism has no doctrine of the soul’s immortality and no eschatological expectations, such as judgement in the afterlife or the evangelical fantasy of “the Rapture”.

It has no central authority, no set liturgy or creed and no interest in doctrinal compliance – the main source of religious conflict and persecution down the centuries.

It takes many forms specific to different ethnicities, meaning that unlike Christianity and Islam it has no global ambitions and does not try to stuff itself down the throat of unbelievers.

Despite the imposition of the coloniser’s beliefs, it has proved extremely durable. In many parts of Africa and the New World it has fused with Christianity in syncretic hybrids that enshrine the traditional practices of ancestral veneration, ritual purification by water, prophecy, exorcism, healing and the interpretation of dreams.

Victorians like Tylor thought of animist belief in Darwinian terms, as the earliest stage in the evolution of religion and a window on the “primitive mind”. This was a step forward, at least, from the notion of an unbridgeable gulf between the “civilised” and the “savage”.

Later scholars turned against such evolutionary thinking as deeply misconceived. They also rejected the “degradation theory”, according to which animist beliefs are degenerate borrowings from high cultures such as ancient Egypt.

“All contemporary cultures and religions [are] regarded as comparable,” writes anthropologist George Kerlin Park.

Most traditional African religions hold with a single Creator – but in a way that recalls the deism of the European Enlightenment. The widespread belief is that God created the universe, but is so remote that he does not engage with it and cannot be approached directly.

The Oromo of the Horn of Africa, for example, reject the Christian ideas of the God of love, God the Father and the Trinity as implying weakness. According to historian of religion Julian Baldick, their Waqa is the all-powerful demiurge of the great forces of nature, “the sky, the stars, the clouds, the god of thunder and lightning”.

Their proverbs convey the deity’s deafness to human cries and the need for resigned submission among his creatures: “A man does not stop praying and God does not change what he has decided”; “People are right to praise God when someone is killed by lightning”; “One does not understand the deeds of God or the laughter of dogs”.

In a widespread tradition, the Dinka of South Sudan hold that God withdrew from the world when the first woman lifted her pestle to pound millet and struck the vault of the sky.

Kenya’s Kikuyu believe the deity has: 

No father, no mother, nor wife
nor children
He is alone
He is neither a child nor
an old man
He is the same today
as he was yesterday 

For this reason, worship of the high god is rare in African tradition ­­– it is the multitude of secondary divinities, who throng the sublunary sphere, that are the objects of veneration, propitiation and service. Foremost among them are the ancestors or, in classical mythology, the shades.

For many non-Africans, this is not a remote idea. Ancestor veneration is practised in Japanese Shinto, Hinduism and Chinese patriarchal religion. Roman Catholicism, the oldest form of Christianity with many pagan borrowings, incorporates remnants of it in All Soul’s Day and Halloween, when the spirits walk abroad, and in the cult of saints.

In Africa, Ghana’s Asante people, for example, acknowledge an inaccessible creator, while their ritual life revolves around the veneration of their matrilineal forebears, conceived of as guardians of the moral order and intercessors with the great spiritual powers.

The Yoruba religion tells of orishas – tutelary spirits subject to the unapproachable supreme being, Oludumane – believing that 401 of them “line the road to heaven”.

Many African theologians resent the term “ancestor worship” as a paternalistic misconception. What is offered to the dead through prayer, offerings and sacrifice is not the worship of deities, but an extension of the honour and service due to living parents. The purpose is to reassure them they are still remembered and loved.

Ancestral spirits are seen as the invisible but most important part of the kinship network. Dead relatives and community members preside over landmark events, including such rites of passage as the Xhosa imbeleko (ritual inclusion of the newborn in the clan), ukubuyisa (reincorporation of the dead), and ukwaluka (initiation into adulthood), and must be cared for and kept favourably disposed.

Former Kenyan leader Jomo Kenyatta distinguished different ancestral spirits in Kikuyu belief, including those of one’s parents, who continue to advise and reproach, and those linked to the wider clan.

Feelings towards the shades are not straightforward: they are objects of love and reverence, but also of fearful placation and numinous dread.

In Totem and Taboo, Sigmund Freud deals with this complexity, noting that people in traditional societies also “fear the presence and the return of the spirit of the dead person”, and offer propitiatory ceremonies not just out of love, but “to keep him off and banish him”.

A Kenyan scholar relates that once they have placated the spirits by offering them sacrifices, villagers expect them to move away.

But “the living dead” are mainly invoked to use their superior resources for earthly ends. One writer notes that ancestor veneration is about “supporting fertility and sustaining the community, by maintaining a harmonious relationship with divinities and channelling cosmic powers for good”.

One conduit is the igqirha (Xhosa) or mganga (Swahili) – the diviner/seer/healer with the gift of access to the spirit world. In traditional society this is enhanced by a strict initiation in which the novice is said to fall ill and dream of “beings in an endless westward march across the heavens, arrayed in feather headdresses and carrying sleeping mats”.

The dead live, but not ­– as in some creeds – for all eternity. University of London scholar Alice Werner points to the grandparents in Maurice Maeterlinck’s play The Blue Bird, who wake from the sleep of death only when someone remembers them.

The ancestors survive and retain their potency as long as they are held in the communal memory. As this rarely stretches back further than grandparents, they become increasingly attenuated and fade away after a few generations.

Once forgotten by the living, they are assimilated to the great impersonal forces of nature ­– storm clouds and the eclipse.

My wife’s ashes are buried in our garden, overhung by an elderberry tree that is strangely frequented by the same robin. At our rural plot, which we bought and built together, I feel her presence.

Habit and tricks of the imagination, no doubt. But one can understand the power and tenacity of animist belief – It has a human scale rooted in one’s kin, free of great frowning cathedrals or high priests in snow-white vestments pronouncing infallibly “from the throne”.

It has no Grand Inquisitor, Day of Wrath, purgatory or everlasting hellfire. It does not practise forced conversion, foster racial hatred, or call for the violent overthrow of other people’s gods.

With its vision of an intimate cosmos, it is more likely to engender respect for the natural world than a faith that tells men to subdue the earth and have “dominion over every living thing”.

Above all, animist beliefs, particularly in ancestral spirits, provide continuity of the ties that bind the living and the dead. For the bereft, like Geoffrey Oryema, this must help to staunch the dripping inner wounds of grief.

Complete Article HERE!

This woman guides dying Mainers through the end of their lives

Molly “Bones” Nelson, a certified end-of-life doula, stands at her pumpkin farm in Cornish. Nelson is a death doula credentialed by the International End of Life Doula Association, and the subject of a new documentary screening as part of the Camden International Film Festival.

by Nick Schroeder

There once was a man who lived on a hill in rural Maine. He was 97, and had no living family and few friends. He had neighbors, but most of them were half his age or younger, and the man could sense that they viewed him with reserve. This bothered him, so he hired someone to help him figure out the problem.

“He said, ‘The neighbors don’t understand me,’” said Molly “Bones” Nelson, who offered her services to the man during his final days. “‘I’ve been here for 50 years and they fish on my land but they still think I’m the crazy old guy they can’t talk to.’”

Her solution? Throw a party.

“He kept telling me, ‘I’m not dying; I’m graduating,’” Nelson said.

Nelson is a death doula. She helps people with the emotional and psychological work of confronting the terminal stage of life, whatever that entails. Often, her work looks like talk therapy, working through death’s thorny questions with those facing them. She also works with clients who have lost someone suddenly, such as in a miscarriage or abortion. In this case, it meant helping a man find a kind of happiness at the end of his life.

To prepare for the party, the man and Nelson baked cupcakes that looked like skulls, crafted a tasseled cap for him to wear, and painted a mural of scenes from his life. They had partygoers write questions they had about death — even unanswerable ones — and throw them in a bowl. Then they played a game: pick a stranger at the party and take turns answering questions from the bowl.

“We played that game for three and a half hours,” Nelson said. “People didn’t want to stop.”

Nelson is the subject of a locally screening documentary, “death and her compass” by the California-based filmmaker Annie Munger. The film is part of the Camden International Film Festival, which runs virtually through Sept. 26.

While they aren’t considered medical professionals, death doulas perform a work that has existed around the world for centuries. In present-day America, the kind of end-of-life care work they provide is something of a lost art.

“Our elders get put off to the side,” Nelson said. “Older people have a ton of wisdom and experiences to share about their lives.”

The cost of in-home elder care has skyrocketed in the U.S. even before nursing homes began facing staffing shortages and enhanced risk of infection with the coronavirus. The trend leaves little time and resources for talking through the end of life.

But it’s often no easier at home. The vast majority of older people — 88 percent — prefer to receive government assistance to age at home rather than receive care in a full-time nursing home or senior living facility, according to a study by the Associated Press-NORC Center for Public Affairs Research published in May. That can push the expensive and time-consuming work of caring for elderly people onto families, who struggle to absorb the often-invisible costs of managing a family member’s physical and mental health, memory loss, food and other needs while juggling their personal and professional lives.

“Death is a huge part of life,” she said. “You’ve had all this amazing growth, adventure and experience. If you don’t process it and have those difficult conversations, it’s like skipping dessert.”

Nelson likes to let her clients lead the process. In the initial phase, they hang out, talking through fears and memories, anything of significance. The dying person supplies their own spiritual beliefs, and she works with what they give her. Big religious and existential questions inevitably come up, but Nelson mostly works with relationships on the mortal plane. (Nelson keeps information from clients confidential, but others, like the 97-year-old, allow her to discuss their cases in general terms after their passing.)

Then, Nelson works with them to design a “legacy project,” something they can leave behind to friends and family, or to the world, that doesn’t neatly fit in a legal will. It might be a party or it might be a quilt, a donated plot of land or a long poem she writes with the dying person’s help and reads to them when fear rides high.

Nelson learned the trade with the International End of Life Doula Association, a training organization founded by New York hospice worker Henry Fersko-Weiss in 2003. Fersko-Weiss was a social work manager at the largest hospice in New York City, accepting roughly 500 patients a day. While he saw them receive adequate medical care, the sheer volume of patients needing hospice care meant that some needs were going unattended.

“I kept seeing these gaps,” Fersko-Weiss said. “As dedicated as the clinicians are, unfortunately the structure and logistics of hospice made it difficult for clinicians to spend a great deal of time and do deep work with people who are facing death.”

Something clicked when Fersko-Weiss talked with a friend who was becoming a birth doula. He trained to become one too, eventually modeling an end-of-life doula program from its teachings about helping expecting parents usher babies into the world. He could train volunteers to be present for dying people in a way similar to those learning to be birth doulas.

Nelson is the only one in the state formally credentialed through international association, which offers a rigorous certification process. There are roughly a dozen working death doulas in Maine who have trained through the association or the End of Life Doula Alliance, which was founded in 2017.

Nelson, 57, took a long road to this line of work. The nickname “Bones” is unrelated to her profession — a scrawny child, she’s had it since youth — but many clients find as much humor in it as she does. She moved to rural Maine from New Jersey at age 18 and has been farming ever since. Today, she primarily grows pumpkins.

Death has been a part of Nelson’s life since birth. She was born with a heart condition, a thin-walled aorta that’s “shaped like an hourglass.” Doctors have told her that it “could explode at any moment.” In 2007, she had a stent put in her heart, and it tore through two layers of her aorta. But she survived and continues to farm, hike and ride dirt bikes.

She’s also lost those close to her. Nelson’s mother died by suicide at the age of 82, after multiple attempts during her life, and her father died of cancer in 2013.

“I’ve had a lot of healing to do,” Nelson said.

Nelson takes death seriously, but doesn’t necessarily see it as a grave subject. It’s easy to imagine her combination of folksy wisdom and well-timed humor softening some thick layers of fear. As shown in “death and her compass,” Nelson’s sessions with clients seem much less like a psychological evaluation or transcendental ritual than two old friends just talking.

Nelson said that she “doesn’t believe in death” after a life spent outrunning its shadow.

“I got a T-shirt that has a picture of a sloth on it. It says: ‘Live Slow, Die Whenever,’” she said with a laugh.

The sentiment captured the way Nelson has come to think about the subject.

“I don’t feel rushed because I don’t feel like there’s an end,” she said. “If I don’t get to ride my dirt bike across Mongolia by the time I’m 60, so what. I’ll just do it next time.”

Complete Article HERE!

‘The End In Mind’ Conference Answers Questions About Psychedelics For End-Of-Life Patients

By Benjamin Adams

As they say, “memento mori.” The end is inevitable to all of us, but we have tools available to provide comfort—even in death. With psychedelics’ growing promise in therapies for trauma and grief, there are endless questions. Take the similarities between near death experiences and psychedelics, for instance.

End Well recently announced it will host “The End in Mind,” the largest-to-date annual virtual conference dedicated to the future of psychedelic medicines in care for people facing serious illness or end-of-life situations, taking place on October 14.

The conference will include panelists such as Melissa Etheridge as well as Dream Corps founder and political commentator Van Jones, along with a roster of healthcare, policy, culture, business and psychedelic leaders.

Conference tracks will cover psychedelic medicines and their uses—from Indigenous practices to recent clinical trials—and the current and future role of psychedelics in care for serious illness, grief and end of life. The science behind psychedelic drug development will also be pored over in detail.

End Well Founder Dr. Shoshana Ungerleider, MD, said that psychedelics could be a “paradigm shift in modern medicine,” creating new possibilities for end-of-life patients.

The event is sponsored by Palo Santo, a U.S.-based psychedelic investment fund that recently launched with $35 million in capital raised and an active portfolio of 20+ companies. Daniel Goldberg, cofounder of Palo Santo will be among the panelists, discussing the opportunities and concerns about the future of psychedelic medicine for people seeking to improve the quality of life at the end. Goldberg founded the diversified venture fund last year with Tim Schlidt and Tony Eisenberg. He noted the variety of voices that are expected this year.

“Our panel at this year’s End Well annual symposium is made up of an interdisciplinary group of professionals that are all psychedelic medicine advocates but with very different perspectives: Dr. Jerry Rosenbaum, Director of Harvard Mass General’s new Center for the Neuroscience of Psychedelics; Dr. Julie Holland, a renowned psychiatrist and psychopharmacologist who has been an advocate in the space for decades; and Shelby Hartman, a talented journalist who founded DoubleBlind, a media business focused on psychedelics,” says Goldberg.

The conference will provide interactive breakout sessions to answer questions and provide a deep-dive into the cultural, regulatory and industry shifts. “The four of us have very different vantage points yet all of us have unique exposure to the psychedelic private sector,” Goldberg says. “We will be exploring the rapid pace of innovation happening in psychedelics and what we are most excited about (and concerned about).”

Also on the panel will be Rick Doblin, Ph.D., American drug reformist, advocate and the founder of the Multidisciplinary Association for Psychedelic Studies (MAPS) as well as Ira Byock, MD, a leading palliative care physician; and Patricia James, Cheyenne pipe carrier, among others.

The conference will also investigate the stigma attached to psychedelics. “Finally, we seem to be moving past the stigma around plant medicines,” said Etheridge, who tackled tragedy and cancer, “and into a whole new era of understanding that will hopefully enable more of us to experience the benefits of these powerful medicines—especially in the most dire times of need when we are confronting illness, grief, mortality, existential fear and death.”

The conference is also sponsored by Reset Pharma, biotechnology company Cybin, the first psychedelics company to be listed on the New York Stock Exchange; atai Life Sciences, a biopharmaceutical company aiming to transform the treatment of mental health disorders; and Microdose, a psychedelic-focused media platform.

“I’m also excited to share a bit about why our Psychedelic VC fund made a huge bet on Reset Pharma, which is developing and commercializing a novel psilocybin-based therapy to address mental health in patients with cancer and other life-threatening diseases,” Goldberg shares. “For its lead asset, the company is using the licensed research of Dr. Stephen Ross’ (NYU) seminal 2016 phase 2 clinical trial data. We believe this could help pave the way to change how we address end-of-life care as a society.”

Psychedelic medicines continue to evolve at a rapid pace. As a fund manager, Goldberg says he’s concerned when he sees valuations get bid up for certain early-stage psychedelic businesses that are based on hype. His fund, for instance, passed up on more than a few deals in the event that his scientific advisory board couldn’t get comfortable with the science—or lack of—behind some deals in the marketplace.

“We stay very focused on due diligence in order to assess a company’s ability to navigate the regulatory path and ultimately the likelihood of successful commercialization,” Goldberg says.

Based on Goldberg’s experience, not all of these psychedelic pharma startups are going to make it, regardless of the positive press they receive or the names on their board. “Clinical trials are incredibly expensive and while it might be easy for start-ups to raise $10-50 million, it’s tougher to come up with $100-300 million for trials unless you have the right product and team, as well as validating investors that have access to downstream capital,” he says.

Given that psychedelics were stigmatized for so many decades, Goldberg stressed the need for a focus on the science.

“Unless we can continue to prove safety and efficacy, doctors will be slow to move patients off of SSRI’s and give these new treatments a go,” Goldberg said. “Ultimately, we hope that patients will be able to try psychedelic therapy before being put on SSRI’s, which are hard to get off of and often have nasty side effects. Currently, psychedelics are still often viewed as a “last resort” but I believe eventually they will become the standard of care for many indications. We need that to be the case in order for insurers to get on board, which is critical as it relates to affordability.”

If we truly want to make these new drugs and treatments accessible to more people, developers need to jump through the regulatory hoops. That process has already been put into motion, for some substances. “The good news is that, even though psychedelics might have a colorful history and backstory, the FDA doesn’t really see psilocybin and MDMA any differently than amoxicillin or penicillin, in the sense that they are just drugs that have to go through the same arduous process to get approved,” Goldberg says. “In fact, because some of the ‘generic’ psychedelics, like psilocybin, have been around so long and have been proven to be safe, they have been granted ‘breakthrough therapy’ designation, which speeds up the process.”

Currently, the Palo Santo fund is invested in more than 20 businesses across the psychedelic ecosystem—with a focus on biotech and drug development. Given the range of early-stage investment, Palo Santo will have the ability to lean into the most promising companies in our portfolio and support them with downstream capital as they progress. “We are also in tech and service businesses related to the space, and we see quite a bit of cross pollination within our portfolio,” Goldberg says.

“We have a very exciting pipeline of opportunities centered around ‘2nd and 3rd generation’ psychedelic compounds,” he adds. “The innovation, accelerated by the incredible scientific talent jumping into psychedelics, is astounding. We see ample room for improvement in psychedelics and do not subscribe to the point of view that innovation is at odds with the broader psychedelics movement.”

Goldberg says it’s possible to respect the rich history of plant medicine while also supporting legalization measures at the same time. By investing heavily in the private sector, it’s possible to achieve improved versions of MDMA, LSD and create new chemical entities.

Psychedelic experiences vary widely, especially when used improperly. There is a vast range of intentions. “I want everyone who wants to go on an expensive ayahuasca retreat to Peru to do so, but I also want safe, prescription drugs—that are reimbursed by insurers—available to those who are more comfortable with that route. We need to meet people where they are with all of this,” Goldberg says.

The End in Mind will take place on October 14, from 11:45am to 5:00pm EDT/8:45am to 2:00pm PDT. Registration is free until September 26. It’s free and open to the public.

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A Physician in the Patient’s Chair

Susan D. Block, who has taught and researched doctor-patient communication and severe illness for decades, found herself on the other side of that relationship in the fall of 2018, which would transform her work, teaching, and practice.

By Tamar Sarig

In the fall of 2018, three weeks into Susan D. Block’s first semester teaching a freshman seminar on death and illness — “The Heart of Medicine: Patients and Physicians and the Experience of Serious Illness” — she learned that she had a mass on her pancreas. In the worst way possible, her field of work and personal life had collided.

As the founding chair of the Dana-Farber Cancer Institute’s Department of Psychosocial Oncology and Palliative Care, Block, a psychiatrist, had spent almost 40 years treating patients with serious illnesses like cancer, trying to figure out how to make their last months more meaningful and less frightening. Now she found herself in the patient’s chair.

Block had been undergoing routine tests for pancreatic cancer as part of a research study for over a decade, due to a strong family history of the disease. Luckily, her preliminary screenings caught what seemed to be cancer at a relatively early stage. “People were looking for it and then they finally found it,” she says. “It was terrifying.”

That terror lasted for about three weeks, as Block prepared for a surgery to remove most of her pancreas. When she finally went into surgery, however, her doctors discovered that, against all odds, she had been misdiagnosed. The mass was the result of an autoimmune disease.

“People had told me that there’s a 95 percent chance that it’s cancer. I wish to be in the 5 percent, but I don’t ever assume that I am,” she says. “It was wonderful, amazing, incredible good news.”

Even after recovering, Block’s brush with cancer would touch all aspects of her life — her attitude toward work, her presence in the classroom, and her conversations with her own patients.

Block’s lifelong interest in the social and emotional aspects of serious disease began during her internal medicine residency program at Beth Israel Hospital in Boston, where she found herself gripped by “how poorly we cared for people who were at the end of their lives.” Drawn to understand her patients’ psychological experiences, she ended up completing a residency in psychiatry as well.

At the time, Block says, “there was no field of palliative care, and there was barely a field of psycho-oncology” — the study of the social and psychological dimensions of cancer. “There was sort of no way to go forward.”

If Block couldn’t follow traditional paths to change the way medical institutions supported critically ill patients, she was determined to forge a path herself. In 1998, she started a new job at Dana-Farber with a substantial mission: to build a psycho-oncology and palliative care program from scratch.

By the time Block landed in the operating room herself, she was a leader in her field. But even after 40 years of teaching about severe illness care and doctor-patient communication, when she found herself on the opposite side of that relationship, Block discovered that some things could still surprise her.

“The one really bad part of my care was being in the hospital after the surgery,” she remembers. Struggling to recover from the operation, Block shared a two-bed hospital room with another woman. “I had to crawl over her to get into the bathroom,” she says. “It was so cramped, and so small.”

At night, after her crowd of visitors had left, the woman began sobbing, and Block’s instincts as a physician kicked in.

“There I was, half doped-up still from the anesthetic, I was trying to comfort her,” Block says. “How can you not respond to somebody who’s that vulnerable?”

In that hospital room, she also saw another, uglier side of the health care system up close. “[The woman] felt like the nurses weren’t taking good care of her because she was Black,” Block says. “Because [nurses] put on their best behavior when the doctor comes in the room. I’d never seen that kind of dismissive, seemingly racially-driven behavior, as I saw from nurses.”

Back home from the hospital, readjusting to normal life after the surgery brought its own set of challenges.

“​​I had a pretty hard recovery,” Block says. “And I thought a lot about how much stress was safe to put my body under.” This was especially challenging after decades of juggling a fast-paced career of clinical work, field-building, teaching, heading departments, and research.

Three years before, she had been by her husband Andy’s side through his own struggle with and, ultimately, death from an aggressive lymphoma. The pain of that experience instilled in her a philosophy of “do it now,” and in the wake of her own treatment, she’s focused on putting it into practice.

She built her own house in western Massachusetts — something she’d always wanted to do. She gave herself permission to cut back on the parts of her career that drained her energy, and focus on teaching and seeing patients instead. When she met a new partner, she allowed herself to find love again.

“I’ve been really lucky in terms of my material circumstances, and I have just wonderful people in my life,” she says. And, of course, she feels lucky to be back in the classroom, teaching undergraduates.

Leaving her seminar three years ago was bittersweet — she didn’t want to stop teaching, but she knew her experience with illness would be an arduous one.

“I felt this obligation to the students,” she says, “but it was really clear that I couldn’t teach a class on serious illness, death, and dying, while I was in the middle of this very terrifying personal experience.”

Her class focuses on encouraging difficult discussions about health; she often brings in speakers ranging from doctors to chaplains to seriously ill patients. At the beginning of the semester, she asks students to fill out a survey about their own attitudes toward death, and for freshman family weekend, she asks them to interview a family member about their goals for end-of-life care.

“I love the idea of trying to teach about this very difficult topic to younger people who hadn’t had the kind of indoctrination or socialization into either the pre-med world or the medical culture,” Block says.

At the end of fall 2018, she returned to the seminar class she had to leave behind when she began her treatment and told them her story.

“They didn’t really know me that well, but it was still sort of a traumatizing, discombobulating, upsetting experience for the students,” she says. She believed sharing her story would serve as a valuable learning opportunity. “I don’t like the word closure that much, but it brought things full circle in a way.”

This semester, Block is teaching “The Heart of Medicine” for the third time. The seminar looks different today than it did in the fall of 2018, but not necessarily because of her own harrowing diagnosis. She’s modified the course to incorporate a discussion of Covid-19, and to focus more on health inequities. She says she doesn’t go out of her way to bring up her story, although she does touch on it when the class opens up about personal experiences with death.

“I want them to name their experiences. So I can’t just stand behind a sort of wall of neutrality and pretend I don’t have relevant experiences,” Block says. “That would not feel right, as a teacher.”

Complete Article HERE!

Everything Dies

It’s the Buddha’s basic teaching. It’s life’s universal truth. It’s what we most want to deny. Sallie Jiko Tisdale on how this hard but liberating truth can transform your life.

Death and Life” by Gustav Klimt.


Most Buddhists put flowers on the altar. We know flowers are beautiful, but that isn’t their purpose here. Flowers begin to die as soon we cut them; we carefully lay death in the place that symbolizes our awakening. We bow and make offering to this crucial truth, built into the bones of the world.

The Buddha spoke volumes of words, an immense canon, but most of what he said comes down to this: Things change. Change cannot be avoided. Change hurts. The fundamental teaching of all Buddhism can be stated as everything dies. The Buddha taught this, it fills the sutras, it is repeated by our teachers. But most of all, we learn this from our own daily lives.

Do we believe that we will dissolve? No. Not deep down in the root of the small self, because the small self plans to live forever.

You have probably learned a traditional formula or two for this insistent teaching about the transitory nature of all things:

Anicca vata sankhara: “Impermanent, alas, are all formations!”

Sabbe saokhara anicca: “All conditioned factors of existence are transitory.”

In the Maha Satipatthana Sutta: “[One] abides observing the phenomenon of arising…abides observing the phenomenon of passing away…”

As a new practitioner, I learned the catechism this way: “All compounded things are subject to dissolution.” The language was strange when I first heard it, and as a young practitioner I found myself parsing the words: Compounded. Dissolution. Notice, I was told, how everything is put together from other things and will be taken apart. I began to notice. A table, a house, a nation—I could see this.

But if all things are compounded and will dissolve, then I am compounded and I will dissolve. And this was not something I could easily accept.

I pretend to accept my own death. Most senior practitioners do; many of them may even believe they accept it. Buddhists have their own peculiar points of pride, outside the usual stream of things we pride ourselves on, like humility and asceticism. Plenty of us are proud of our equanimity in the face of extinction, at least until we see the headlights bearing down.

So how deep does this acceptance really go? It’s not just Buddhists who kid themselves about being prepared for death. It’s people. It’s all of us who don’t want to admit that we are organisms fighting for life, that we can sagely repeat, “Annica, annica, all compounded things are subject to dissolution,” without really confronting what it means.

Do we believe that we will dissolve? No. Not deep down in the root of the small self, because the small self plans to live forever. When we say that “Everything dies,” we mean everything dies but me. And we can get kind of fancy about this point: Everything dies, including my body (but not my awareness—not me). Everything is subject to dissolution, but something passes through to a new form and doesn’t ever go away (that’s me). In a thousand ways, most of them not entirely conscious, we hold on to the hope that something of this self, somehow, will remain, and we hold on to that even as everything we touch slides away like sand in running water.

Why should we pretend to more confidence than we feel? Everyone is a beginner when it comes to death. We can’t practice it. When my mother died, it was the very first time that my mother died, and I didn’t know how to do that, to be a daughter whose mother was dying, to be a daughter whose mother had ceased to exist. When my best friend died—when my teacher died—I didn’t know how to do it. Each death I’ve known has been the very first one of its kind. Even with experience—I know how grieving feels, I know the altered state of a vigil, I know a lot about that—I can’t entirely prepare. And when I die, it will be the first time this particular me dies, and I will be a beginner.

Yes, I know that we are all dying all the time. That’s what it means to be a compounded thing dissolving—this self, this moment, gives way to the next as the girl gives way to the woman who gives way to the crone. I know that the me of today is not the me of yesterday, and I was also taught that if you die once, you never need to die again. But the real teaching of that formula, the falling away of body and mind for a ceaseless moment, is that you are already dead. I know this, but I don’t think my body does.

Slay the demons of hope and fear. My teacher would say this to me at a time when I was knocking up against deepening anxiety. My stubborn refusal to submit to the meaning of that anxiety made me more anxious still. The stronger I resisted, the deeper my anxiety became, until I sank well into true fear. How could I slay that demon when I was afraid to walk out the door?

We need to talk about death bluntly, honestly, and often.

“Vanitas Life, Death, and Resurrection by Ezio Gutzemberg.

The original Pali word for aversion, dosa, is various and shaded. It can be translated as anger or hatred, denial, projection, distortion, aggression, repulsion, even disgust. That is how it can feel to talk about death, about our own death. But I want you to think about it and I want you to talk about it. Even if you have considered your own death deeply, how often do you talk about it? Do you talk about your private conflicts or confusion, your questions, your plans?

How do we begin? Begin with the fear. Begin with the resistance. We know the question. It is why we begin to practice in the first place: Why do we suffer? And we know the answer. It is why we keep practicing: We suffer because of change and resistance to change.

But knowing the answer does not stop the question from being asked, and knowing an answer today doesn’t mean we will remember the answer tomorrow. Ignorance is the first link in the twelve-fold chain of causation—ignorance of impermanence, of anicca, of anatta, of no-self. This chain feeds itself endlessly—our ignorance of the ephemeral nature of the self building a self over and over. The chain is broken only by the transformation of that first mistake, being ignorant about the compounded nature of the self, which is not separate or bounded at all.

What do you fear about death? Make a list. Be honest. Autopsy? Being alone? Pain? Loss of privacy? Do you fear soiling your bed? Do you fear needles? For what do you hope? Make a list. Be honest. Do you want to see it coming? Do you want to be asleep? Do you want to be very old?

Ask the question again. Why am I afraid? Because I will die. What does that mean? (Wait a minute. Will I die? Do I have to die?) Ask yourself: Are you ready to die? Don’t answer too quickly, because that last one is a doozy. Even people who have made great strides in accepting the fact of their own inevitable dissolution will be flooded with adrenaline when the headlights bear down. The body has its own hopes.

Talk about death. Talk about everything. Imagine it. Write a description of the scene of your death. Where are you? What do you see? What do you smell, taste, touch? Who is there? Are you inside or outside? Is it warm or cool? Is there music, or words?

Imagine it. Write it down. Then tell everyone who needs to know—your family and friends and teacher and doctor—what you want. Make a record of your wishes and don’t forget to decide how your body should be handled after you’re done with it. Make copies and pass them out.

Then tear it up. Let it go with all your heart. This will be the work of the rest of your life.

We can do all this. We can make a plan, buy a plot, fill out the advance directive, decide what music we want to hear as we go. But we can’t plan not to die. The essence of dying is the loss of control. This is the hardest part for many of us—not that death will happen, but that it will happen without our hand on the controls. It will happen as it happens, when it happens, where it happens, and chances are it won’t go according to plan. The only thing we can control, and only with practice, is how we face whatever happens.

These days it is common to talk about a “good death.” (There are many official, even government-issued, definitions of a good death.) A good death is usually defined as one where a person is comfortable and at peace.

For myself, I want to think about a right death, a death that fits the life I’m trying to live. Most deaths include what anyone might call good moments and bad moments, desired and undesired consequences. So it is with our lives, and so it is with death. Right deaths are all different; you can’t define the details. For me, it means a death unhidden—from me and from those who love me. It means a death met with grace and willingness when the time comes. Achieving this will be the work of the rest of my life.

If we can face it, recognizing the reality of death will transform our lives.
Flowers are beautiful because they are brief. Beauty is a measure of fragility and brevity and transformation, created in part by our awareness of the precious value of this moment—this moment is what we love. Death is utterly natural, shared by all; it is also heartbreaking. That equation isn’t dissonant; it’s the nature of love. With our eyes open to change, each thing we meet is luminous and sparkling. To love means to lose. To lose means to love. The last breath allows us to cherish another without reservation, holding nothing back.

Slay the demons, my teacher told me. That meant accepting my anxiety, my fear. It meant coming to see that hope and fear are one thing: fantasies of the unborn future. Hope pulls and fear pushes and together they keep us stuck in what has not happened, living a half-life of imaginary events. I exhausted myself on that mountain, until I gave up. Giving up was the key. Accepting the demons of hope and fear until they slew me, which was what my teacher had been saying all along.

The parable of the burning house told in the Lotus Sutra is a familiar one. The children do not know the house is on fire, so they won’t leave until their father tempts them with carts full of treasure. So we are with our own suffering, our ignorance. The Buddha offers us treasures, including one so great we couldn’t even imagine it.

Some years ago, I had a brief, vivid dream. I saw a room completely engulfed in flames, and several people were walking calmly through the room, smiling. One turned and looked at me and said, “I can’t tell you how safe I feel in this house.”

When I begin to truly accept myself as this compounded thing—a dewdrop, a bubble, a cloud—when I really believe for a moment that my precious me is a passing sigh in the oceanic cosmos of change, then I begin to find safety inside the burning house. I don’t need to escape if I know how to live inside it. Not needing to escape, I no longer need rewards. I just walk through it, aware of dissolving.

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