Tag: Meditation

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‘The hardest and most beautiful conversation I’ve ever had’

— how end-of-life storytelling on TikTok helps us process death

By and

In a recently viral TikTok series, creator Ali Tate Cutler spends time with her terminally ill grandma who has made the choice to end her life through euthanasia.

While sharing start-of-life stories – such as ultrasound pictures or childhood milestones – is commonplace, posting end-of-life “journeys” online has users conflicted.

Such stories raise questions of autonomy, vulnerability and privacy, but are ultimately useful in changing how we talk about preparing for death.

@alitatecutler Replying to @Matthew This was the hardest and most beautiful conversation ive ever had. Healing for both parties. I had resistance to Euthanasia before this, but after being with her and hearing her, I no longer do. ❤️ #euthanasia #finalfarewell #ondying ♬ multiverse – Maya Manuela

Dying, virally

In Cutler’s series of videos, they show off their outfits before their “last lunch” together. Cutler’s grandma “Bubbie” gives life advice, and they talk through their thoughts and feelings about the euthanasia process.

Cutler’s videos are divisive. Many commenters criticise the attention gained through this subject, commenting, “Why would you publicise this? So wrong.”

However, some recognise it as an important story to tell and reply with their own stories about loved ones, showing kindness to Cutler’s family. Some recent comments have said:

This needs to be regular practice. Thank you for sharing your story.

It’s a blessing to be privy to conversations like this.

Sending her love on her next adventure. Safe travels to a beautiful soul.

It’s telling that many commenters thank Cutler and mention being “privy” to a usually private moment; we hear far fewer end-of-life stories than start-of-life stories.

Talking about death and dying

As scholars who research health, death and grief, we know there can be stigma and silence around end-of-life stories, despite an underlying obsession with death which pervades our media and social circles.

Experts in the field, such as those working in palliative care, call for more open conversations and stories about dying. They argue that not doing so is hindering happier deaths.

Mentioning death and happiness in the same breath may seem like an oxymoron. It’s natural that death and dying bring feelings of worry, fear, grief and regret. Those who talk about death and dying publicly (as we can attest as researchers in these fields) are often labelled grim, maudlin and even “clout-chasing”.

These reactions are understandable – we are biologically and socially conditioned to fear death. Our brains “shield” us from the reality of death, leading us to imagine it as something which happens to others rather than ourselves.

The “other people” we often imagine dying are elderly people. They can face infantilisation and assumptions that they are forgetful or incapable of making choices and speaking for themselves. Maturity of age, experience, autonomy and storytelling capabilities are overlooked.

Commenters assume Cutler is milking her grandma’s death for “clout” rather than enabling her grandma to tell stories which are important.

Cause to be cautious

Concerns of safety and vulnerability are legitimate and, of course, not all those at the end of their lives can tell their own stories. As life narrative theorist Paul John Eakin states, the breakdown of adult life and memory brings us “face to face with the end of an identity’s story”.

However, assuming that all elderly or dying people are beyond constructing stories of their identities or lives is folly. We must share end-of-life stories – safely, collaboratively – or risk oversimplifying the complexity of dying and denying the autonomy of dying people to share their feelings.

Out of pages and into our screens

End-of-life storytelling isn’t new, autothanatography – writing about one’s own imminent death – is an established literary genre.

This unique genre not only helps us process death (our own or a loved one’s), but also normalises anticipatory grief (grieving before the fact). Australian authors such as Cory Taylor and Georgia Blain have penned their own deaths.

In Dying: a memoir, Taylor writes:

I am making a shape for my death, so that I, and others, can see it clearly. And I’m making dying bearable for myself.

Similarly, at the end of Blain’s memoir, The Museum of Words: a memoir of language, writing and mortality, Blain acknowledges the power of having written her own life and death, stating,

This miniature is my life in words, and I have been so grateful for every minute of it.

As writers and creators like Cutler demonstrate, the end-of-life stage can be difficult and heartbreaking, but is also a time to reflect. Autothanatological stories, whether written or digital, are a chance to “shape” death and to contemplate the past and the future at once.

The platform is the message

Backlash aimed at Cutler may be due to her platform of choice. TikTok can be denounced as an app for young, vain people creating dance videos and “thirst traps”.

But content about dying is in demand, as evidenced by popular sub-categories “DeathTok” and “GriefTok”. The juxtaposition between lighthearted posts and stories about dying on the “video dance app” can be an adjustment.

Cutler, a Victoria Secret model, posts both kinds of content concurrently. Some users may find this jarring but it demonstrates that loss is an integrated part of life, not something separate. TikTok and similar sites are ripe for developing such nuanced conversations and even cultural practices around death.

Sites like TikTok create a unique space for end-of-life narratives to reach vast audiences through visual, auditory and algorithmic timelines, suggesting content, and encouraging engagement. Users interact with one another, and explore the complexity and inherent contradictions in reflecting on a life while preparing to lose the person who lived it.

As Cutler responds to a commentor, “This was the hardest and most beautiful conversation I’ve ever had”.

These narratives are moving rapidly from the pages of memoir to the instant accessibility of our mobile phones and we must make conscious efforts to be open to diverse stories about dying.

If we interrogate how we feel when we encounter challenging or surprising end-of-life stories, we can broaden the ways we think and talk about dying, and, indeed, even celebrate happy moments among the sad.

Complete Article ↪HERE↩!

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Why was it so hard to bear witness to my father’s final days?

— A former ICU nurse and no stranger to death, I didn’t realize that the most meaningful way to ‘do something’ for my dad was to be present at his bedside, ‘doing’ nothing at all.

Bronze lovers adorn a tomb in Milan’s Monumental Cemetery.

By Sherrie Dulworth

Over the past 20 years, I have been present with four loved ones as they died of terminal illnesses in their homes. Before their deaths, I assisted with comfort care and busied myself helping with household chores. Busyness made me feel useful. Sometimes I talked or listened; other times, there was nothing to do except to sit together in silence, which was a challenge for me.

As a former ICU nurse, I was no stranger to death, but I was a stranger to understanding that some actions are more significant than “doing.” While many of the tasks were important, some even necessary, they were not what mattered most.

Instead, it was the seemingly simple act of being present, of bearing witness in the face of impending death, that was the most meaningful — and the most difficult — thing I did.

More people now choose to die at home in this country than in any other setting. It’s likely, then, that in the future, many of us will be present with someone who is dying. If they are not at home, we might be together in a hospital or nursing home. Yet our society offers little guidance on how we can best emotionally support someone who is dying. There is also scant advice on how best to support ourselves.

Might this be a good time to reflect on what we hope for others and for ourselves in the final phase of life? How do we want to show up? What will we want and need from our loved ones? I interviewed a variety of experts versed in good endings.

BJ Miller, a palliative care physician whose Ted Talk, “What really matters at the end of life,” has been viewed more than 16 million times, told me, “There is poignancy and power in just being present with someone, but our minds get in the way. Our minds tell us to go do things or to run away. I think we need to honor the power of just being, naming what a profound offering it is, and how difficult it is, to sit with suffering that you can’t change.”

This is not stoicism. Nor is it, as Miller said, “an exercise of the intellect. You could force yourself to sit still at the bedside, but will that register with the person in the bed if you aren’t present emotionally?”

For me, being there for others means I must face the vulnerability that impending loss provokes. I must counter my own instincts to freeze or flee. As empathy and vulnerability researcher and bestselling author Brené Brown says in her documentary, “The Call to Courage,” “Vulnerability is having the courage to show up when you can’t control the outcome.”

Like living, dying is sometimes a messy business. I hope to hold space for the dying with empathy and solidarity, showing up without judgment, regardless of what physical or emotional messiness might arise.

This may sound a bit overwhelming, but as the Rev. Paul Tesshin Silverman, a New York-based Zen Buddhist priest, told me, “Have the courage that your heart is big enough to be able to take in a whole rainbow of different feelings and emotions. It will only strengthen you and not destroy you. Allow yourself to be present, breathe, and allow whatever emotions to come out, so that you’re present.”

Silverman described being in Japan as a young monk in his 20s when a girl of about 14 in his village was dying of leukemia. “I went over every day to spend time with her. I felt like I had to get busy for her.” He learned that her dying wish was to go to a boy band concert, and he arranged for her to do that. “I was doing tons of stuff to make her last days happy,” he said. “When I think back on it, the most profound moment, which I wasn’t aware of at the time, was the last day I spent with her, sitting there and just holding her hand.”

Sometimes death comes quickly, but often it tarries, creating an emotional roller coaster for those who are present. When my father was dying from an aggressive brain tumor, he fluctuated between being semi-comatose and responsive for almost a week. In hindsight, I wish that I had allowed myself to stay mindfully present, instead of projecting into the future, engulfed by anticipatory grief.

“Sitting in the liminal space is difficult,” death doula Nicole Heidbreder told me. As a former labor and delivery nurse, Heidbreder has worked on both ends of life’s spectrum. She said, “I try to be present as a fellow mortal, watching others do what I will someday do. If I can be present with compassion, tenderness, and shared humanity, it lets them know they’re not alone.”

According to death doula Elizabeth Johnson, “It takes a kind of reverence to see what is unfolding in that space. It is a mystery to everyone including to the person who is dying. For me, the spiritual component is recognizing that there are equal parts of absolute grace and mystery as we physically unravel from our physical form.”

For his part, Miller said, “I think the sacredness comes from letting go of impulses to control or to fix. You’re not running away from the impulse; instead, you’re running toward some basic sense that life is bigger than you or me. It’s not ours to understand that there are forces at work that include us, but that are much bigger than us.”

One literal definition of the verb “bear” is to support the weight of or to sustain. In bearing witness to another person at the end of life, we support and honor them in their transition. The lesson that I’ve come to realize is that this is, in fact, doing something in the most real and important way possible.

Complete Article ↪HERE↩!

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The parting gift from my dying friend was an extraordinary act of selfless compassion

— In the hospital room I lost it. I stood there awkwardly with wet eyes. And then something incredible happened

We are raised to be stoic in the presence of the dying, when our instinct is the opposite.’

By

The word that our old friend was about to die travelled as quickly as a Mallee scrub fire. He’d been medically evacuated home from overseas a week or so earlier. He was now in hospital with his family about him, not very responsive and unable to talk.

“You should get there quickly. He might only have a day or two.”

There was disbelief and shock. I’d last seen him across a cafe table in Glebe three months earlier where he was characteristically ebullient. He enthused about his plans overseas for the years ahead, and spoke of his love for his children and grandchildren.

He gave me four boxes of antique books.

“I don’t need stuff where I’m going,’’ he said. He meant overseas. His words now seem unintentionally prescient.

The sadness I felt when I heard of his terminal decline was largely about his now unrealised – and cruelly thwarted – plans. Also, I just couldn’t – still can’t – foresee a world without this man, one of the bravest, most forthright, irreverent, passionate and generous people I’ve known.

Last year in this space I wrote about the importance – and occasional fickleness – of “mateship’’ and male friendship. I wrote how “two of my most important friendships have been with men who are both 20 years older than me’’.

“Both are intensely creative and passionate, have done amazing things while continuing, as their 80s approach, to live compelling lives that have been marked by courage and iconoclasm, sensitivity, tragedy, devastating loss, success, disappointment and, not least, a desire to do good. They’ve gently guided me and been there (each with a sixth sense, almost, that told them I was troubled) when life has cut up rough.’’

This was one of the men I had referred to. He’d long been around for me as a mentor – on how to be genuine, how to be true to your beliefs and art, and especially on how to learn to not give a damn about the critics and the knockers. He’d been there to counsel me through the grief associated with my parents’ deaths. He’s the type of bloke who texts when your team wins – or loses – big. Who always asks after – even offers to mind – your dogs.

When serious illness struck my family a few years ago, never a week passed without him checking in. Urging me to hope. For hope and optimism were always his propellants. Publicly at least.

And so I drove out of Sydney on one of those glorious, crisp autumn mornings under a crystalline sky of the gentle blue you might find on a bolt of shirt cotton in the tailor’s window. It was an air-punch morning. One on which to celebrate life. And I was driving to a regional hospital to say goodbye to a dear friend who, although 77, was Peter Pan incarnate to me and so many others. I was counselling myself as I drove to keep it together. For him. For how much do the dying fear what’s next and become even more afraid when their anguish is reflected in our eyes and responses? We are raised to be stoic in their presence, when our instinct is the opposite.

It was on a day like this, 25 years earlier, we’d first met over a long lunch in Sydney where I’d come, as a newspaper reporter, to write a profile about him. We’d been true mates ever since. Although I do wonder at the equality of our friendship; he always seemed more there for me than I for him. Yes, we talked often about the tragic death of his adult son. But I could offer him nothing, then, because I had never experienced any such loss. I could not reciprocate the hope he’d always urged in me. For it was already hopeless. I could only lend a caring, passive ear to his pain. I don’t know how he survived that. Testimony to an old soldier’s resilience, perhaps.

And in the hospital, now, there he was in bed, diminutive now for such a robust man and wearing the pallor of imminent death. His beautiful children were about him, the room brimming with love. His eyes and his smile sparkled as they always had. He grinned as we held hands. There was time alone. I thanked him for it all. And yes, I lost it. I could do nothing but stand there awkwardly, with wet eyes, when his kids re-entered the room. I felt like an intruder.

And then something extraordinary happened.

Helped by his son, he stood on unsteady legs upon a mobility device to visit the bathroom. I gave him a stoic two-handed thumbs-up. He smiled and gestured for me to come forward. As we hugged in silence he patted me on the back as if to sooth my earlier evident distress.

It was an extraordinary act of selfless compassion, a perpetual gift if you like, from a mate who had already imparted so much to me about life and humanity. He was making sure I was OK.

He died a week later.

Complete Article ↪HERE↩!

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Paul Simon Confronts Death, Profoundly, on ‘Seven Psalms’

— The 81-year-old songwriter ruminates on mortality, faith and meaning in an album that could be a farewell.

On a new album, Paul Simon is thinking about time, love, culture, family, music, eternity and God, striving to balance skepticism and something like faith.

By Jon Pareles

What do songwriters do when they feel death approaching? As time runs out, some choose to spend it by determinedly creating music to outlive them.

“Seven Psalms” sounds like a last testament from the 81-year-old Paul Simon. It’s an album akin to David Bowie’s “Blackstar” and Leonard Cohen’s “You Want It Darker,” which those songwriters made as mortality loomed; they each died days after the albums were released.

Their generation of singer-songwriters has dedicated itself to chronicling their entire lives, biographically and metaphorically, from youth through last words. “Blackstar” was turbulent and exploratory; “You Want It Darker” was stoically bleak. “Seven Psalms” stays true to Simon’s own instincts: observant, elliptical, perpetually questioning and quietly encompassing.

The album is constructed as a nearly unbroken 33-minute suite, nominally divided into seven songs that circle back to recurring refrains. It has places of lingering contemplation and it has sudden, startling changes; its informality is exactingly planned.

Simon begins the album in his most casual tone. Over calmly precise and rhythmically flexible guitar picking, he sings, “I’ve been thinking about the great migration.”

Almost immediately, it becomes clear that the migration is from life to death, a transition the singer is preparing to make himself. He’s thinking about time, love, culture, family, music, eternity and God, striving to balance skepticism and something like faith. “I have my reasons to doubt/A white light eases the pain,” Simon sings in “Your Forgiveness.” “Two billion heartbeats and out/Or does it all begin again?”

Simon’s songwriting has never been particularly religious. Over the years, he has drawn on gospel music for songs like “Bridge Over Troubled Water” and “Loves Me Like a Rock,” which bring religious imagery to secular relationships, and his 2011 album, “So Beautiful or So What,” had touches of Christian imagery — but also imagined “The Afterlife” as one last bureaucracy, where arrivals have to “Fill out a form first/And then you wait in a line.”

“Seven Psalms” is more humble and awe-struck. Its refrains return to, and work variations on, the album’s opening song, “The Lord.” As in the psalms of the Bible — which, as Simon notes in “Sacred Harp,” were songs — Simon portrays the Lord in sweeping ways: wondrous and terrifying, both protector and destroyer, sometimes benign and sometimes wrathful. The Lord, Simon sings, is “a meal for the poorest, a welcome door to the stranger.” Then he turns to naming 21st-century perils: “The Covid virus is the Lord/The Lord is the ocean rising.”

Much of the music sounds like solitary ruminations: Simon communing with his guitar, which has been the subtly virtuosic underpinning of most of his lifetime of songs. As his fingers sketch patterns, he latches onto melody phrases and then lets them go, teasing at pop structures but soon dissolving them. And around him, at any moment, sounds can float out of the background: additional supportive guitars, the eerie microtonal bell tones of Harry Partch’s cloud-chamber bowls, the jaunty huffing of a bass harmonica and, in the album’s final moments, the voice of his wife, Edie Brickell.

In the course of the album, Simon sings about personal distress and societal tensions. In “Love Is Like a Braid,” a song of gratitude and vulnerability, he sings, “I lived a life of pleasant sorrows until the real deal came/Broke me like a twig in a winter gale.” In “Trail of Volcanoes,” he juxtaposes youthful exploits with adult realities: “The pity is the damage that’s done/Leaves so little for amends”

Meanwhile, Simon’s tartly aphoristic side reappears in “My Professional Opinion,” a swipe at social media context collapse set to a country-blues shuffle. “All rise to the occasion/Or all sink into despair,” he sings. “In my professional opinion/We’re better off not going there.”

He ends the album — possibly his last — with a song called “Wait.” He protests, “My hand’s steady/My mind is still clear.” Brickell’s voice arrives to tell him, “Life is a meteor” and “Heaven is beautiful/It’s almost like home.” At the end, he harmonizes with her on one word, extended into five musical syllables: “Amen.” It sounds like he’s accepting the inevitable.

Complete Article ↪HERE↩!

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‘I have my life in my own hands’

— A filmmaker spent three years with Paralympian and triathlete Marieke Vervoort to explore her wish to die by euthanasia

By Amy Woodyatt

Throughout her storied career, triathlete and Paralympian Marieke Vervoort captured the imagination of her native Belgium and the wider world.

But it wasn’t just her stack of sporting achievements that drew attention.

Vervoort lived with a degenerative spinal and muscle condition and had long been vocal about how one day she wanted to – and would – end her life by euthanasia.

Euthanasia involves a physician administering a drug to end the life of a patient who is suffering, usually with a debilitating or life-limiting condition.

“Everyone is pushing me and asking me, ‘When are you going to die? Do you know already the date that you’re going to die?’” she told documentary maker Pola Rapaport, who last year directed the film “Addicted to Life” about Vervoort.

“I said, ‘F**k you.’ … You don’t know when you want to die. When the time comes, when I feel it’s enough, then I will decide.”

She was a Paralympic gold medalist at London 2012, winner of silver medals at Rio and holder of a European record for the T52 100 meters, but Vervoort’s condition caused her near-constant pain and made sleeping very difficult.

She received euthanasia approval in her native Belgium in 2008, but far from signaling the end of her life, Vervoort was very vocal about how the ability to control her own destiny empowered her to continue to compete at the highest level and make the most of her remaining days.

Documentary maker Rapaport, who encountered Vervoort’s story after reading a news report about her, says she was instantly captivated by the athlete and how the “paradoxical” permission to die “had given her a kind of liberation of spirit.”

“Her knowing that she could choose her date of dying and the conditions under which she would die, and whom she would have with her. … The fact that that had given her so much mental liberation and spiritual liberation, I thought, was a fantastic story,” Rapaport told CNN Sport.

Vervoort had been living with her illness, which caused paraplegia, since her teens, and as she got older, she became involved in wheelchair basketball, swimming and triathlons. By the time she applied for euthanasia, she had already considered and planned to die by suicide.

“I no longer have a fear of death,” she explained. “I see it as an operation, where you go to sleep and never wake up. For me, it’s something peaceful. I don’t want to suffer when I’m dying … When it becomes too much for me to handle then I have my life in my own hands.”

Rapaport added: “She told us on day one, ‘The time is not here for me to call my doctor and tell him that I want to go now. But when the bad days outweigh the good days, that’s when I will do it.’”

Ultimately, that moment ended up coming over a decade after she was granted the approval for the procedure.

A love for life

Vervoort won gold in the T52 100m wheelchair race and silver in the 200m race at the London 2012 Paralympics, then claimed two further medals at Rio 2016.

Apart from her athletic endeavors and achievements, Vervoort made sure to live to the fullest toward the end of her life, making time for wheelchair bungee jumps, Lamborghini racing with driver Niels Lagrange, trips abroad and time with her close friends.

Vervoort’s continued enthusiasm for living in spite of her suffering was the result of being granted the choice to do what she wanted with her life, Rapaport said.

“The most important central theme of the film is that when a person has control over their personal body, mind, spirit, that it gives them freedom to live. And in this case, having control over decision-making about the end of your life,” Rapaport explained.

“She had incredible highs and really amazing successes that still astonish me and I think astonished her fans and the Belgian public and the royal family. And she also had horrendous lows,” Rapaport said.

Vervoort was named a Grand Officer of the Order of the Crown by Belgium’s King Philippe, whom she met in a ceremony in 2013, along with Queen Mathilde.

By the end of her life, seizures and excruciating pain had become almost daily for Vervoort, which also understandably contributed to a decline in her athletic ability.

The day Rapaport and her husband, Wolfgang Held, who is also a filmmaker, met Vervoort, the athlete experienced a seizure, which at the time led them to believe she was dying in front of them.

“It was grueling to watch. It was very upsetting to watch when Marieke would go into the seizures, and over the three years that we shot with her on and off, it happened more and more frequently,” Rapaport added.

“I didn’t want it to be a film only about this marvelous Paralympic athlete who triumphs in the face of incredible odds. I really wanted the audience to get the sense of what this young woman goes through on a regular basis,” she explained.

An ongoing conversation

In 2019, after a small party with friends and family, Vervoort died through euthanasia at her home in Diest, Belgium, at the age of 40 – and although it has now been some four years since her passing, conversations around euthanasia are still as relevant now as they were then.

Although a few European countries including Belgium, Luxembourg, the Netherlands and, recently, Portugal allow euthanasia under certain conditions, euthanasia and assisted suicide are not legal in most countries, and assisting a suicide, or providing a means to die by suicide, is punishable with jail time in many places.

The Vatican condemned euthanasia in its strongest language yet in 2020, calling it an “act of homicide” that can never be justified.

Meanwhile, debates resurface in Belgium over patients who have died by euthanasia on the grounds of psychiatric reasons.

Last year, the European Court of Human Rights ruled that Belgium didn’t violate the rights of a person with depression when it accepted her decision to go ahead with a euthanasia procedure after her son, with support from Christian advocacy organization ADF International, mounted a court case that was highly publicized in the country.

In Belgium, 2,966 people died by euthanasia in 2022, comprising 2.5% of all deaths in the country that year, according to the country’s Federal Commission for the Control and Evaluation of Euthanasia.

Of euthanasia performed in 2022, nearly 90% of patients were over the age of 60, with almost 60% of the 2,966 who died having cancer, about 20% affected by multiple diseases and about 9% affected by nervous system diseases.

Rapaport told CNN Sport she wanted Vervoort’s experience – shown through shots of the athlete grimacing and crying out in pain, as well as footage of her seizures – to help people to understand why people would decide to die by euthanasia.

“It’s not an advocacy film. It doesn’t have any statistics. There’s no politicking in it. I felt that the more you can enter into this young woman’s experience, the more you will understand the arguments for assisted dying, no matter what country you’re in,” Rapaport added.

“Her story does expand the conversation, and you see what a person goes through and her case: how [the right to die as she wanted] improved her life immeasurably.

“That’s what I thought was so beautiful about her story, that this permission made her life so much better in the meantime, and it really allowed her to live to the maximum. And that was just unbelievably inspiring,” she added.

Rapaport hopes the film will keep conversations around death ongoing.

“It’s something generally people don’t want to talk about until they absolutely have to; even then, they don’t want to talk about it. But having control over that really can transform the rest of a person’s life and that is all we have.

“That’s all we have because we’re all going there,” Rapaport added. “It’s just a matter of when, how and how it will be handled.”

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My death is close at hand.

— But I do not think of myself as dying.

By Paul Woodruff

How often do you think about death? “Every third thought,” said Shakespeare’s avatar Prospero in the last line of the last speech he gives in Shakespeare’s last play, “The Tempest,” aside from the epilogue that follows the play. My friends say they think of death at least as often as Prospero. I do, too. If we think about death so much, we ought to know what to think about it. Philosophy is supposed to have answers, but the answers we hear most often from philosophers are not good for us. “Live every day as if it is your last,” we are told. “Remember that you are on the way to death each day.”

A friend recently wrote an email message with this line in it: “Paul is dying of a lung infection.” He had meant it for someone else, but he had misdirected it. That sentence infuriated me. I do not have a lung infection. My death is close at hand, however, because of a lung condition called bronchiectasis, and I am on oxygen day and night. But I do not think of myself as dying. I am living each day with as much life as I can put into it. For me, that means going to bed each night planning at least one project for the next day — something worth getting out of bed and living for. As I think of dying, I make each day a time for living, for having something to live for.

What kind of project is worth living for? Not a project I could complete today. Worthwhile projects spread out over time. Writing this small essay and finding someone to print it will take at least a week, and today is only the first day. I will make sure that the last day for this essay will be the first day for something else. Thinking of death, I want to live every day as if it were the first for something.

Living as I do, with projects that continue over time, I can be sure that my death will cut me off before I finish something worth doing. I want to be cut off when I die of something I care about doing — not from thoughts of death alone. Unless I am in unbearable pain, I should be able to live right up to the last moments. Here is an inspiring (although slightly gruesome) example: Under bloody Queen Mary, Archbishop Thomas Cranmer, the author of the lovely Anglican prayer book, was burned at the stake for his protestant views despite signing false confessions of faith in Catholic doctrine. Even as the flames licked up around him, and his death was moments away, he was very much living (not dying) when he put his right hand into the heart of the fire to punish it for signing false confessions

I know I will die soon. But must I be miserable about it? Why not find a cause for joy in each day? Some corner of my mind always knows that sad thoughts lurk behind my projects. But my dying will be much harder on my loved ones than it will be on me. Survivors often think they have failed to keep their loved one alive. I want my survivors to know that death is not unwelcome to me, although I want to be living each day. There’s nothing wrong with dying. All the best people in history have done it. Let foolish philosophers see themselves as dying every day. Thinking of death, I choose life.

Complete Article ↪HERE↩!

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A guide for the end

— Woman finds support in end-of-life doula program


Jane Schostag (left) sits with her end-of-life doula, Mary Beth Trembley, at Schostag’s Skyline home on March 15. When Schostag learned she had terminal cancer, she sought out Trembley as a doula for support and guidance on her end-of-life journey. This week Schostag entered hospice.

By Brian Arola Mankato

Jane Schostag doesn’t shy away from discussions about death, even her own.

The Skyline woman, a longtime English teacher at Mankato West before her retirement, has terminal cancer.

Rather than avoiding the topic of her own mortality, Schostag has been spending what will likely be her final months reflecting on and preparing for what she calls her “farewell journey.”

An end-of-life doula is helping guide her.

“People have doulas when they have babies because having babies is a lot of work, it’s stressful,” she said. “Well, so is dying, so you got a coach on one end and a coach for the other.”

End-of-life doulas serve as nonmedical companions offering support and guidance on death, sometimes complementing medical services provided by hospice care. A doula’s specific duties vary depending on their background and the person’s needs, but one important quality they share is a willingness to acknowledge and talk about death.

Having doula Mary Beth Trembley with her during this stage in life, Schostag said, is like having a “caring, informed friend” willing to tackle the topic head-on.

By putting death on the table, the hope is people live their final days to the fullest instead of awkwardly avoiding any talk of what will inevitably happen.

“We should treat it as a sacred time and support that process,” Trembley said. “People think it’s morbid to talk about death and dying, but we’re all going to die. It’s part of life.”

Trembley is one of several trained end-of-life doulas in the Mankato area — she received her training through the Conscious Dying Institute in Boulder, Colorado. These doulas meet up monthly to support each other and share resources.

The services can be available on a volunteer basis or paid depending on the recipient’s circumstances.

When they find out about someone in need of a doula, they consider which of them would be the right fit. Sometimes a person will meet with multiple doulas, such as when Trembley introduced colleagues to Schostag because she knew they’d get on well.

Their end-of-life doula network in the Mankato area was just getting up and running when the COVID-19 pandemic started, which made connecting with more people difficult.

Now, as the network looks to work with more people, Trembley and Schostag hope sharing their experiences as doula and recipient leads more people to become doulas and more people to seek out the services.

Diagnosis

Schostag found out she had a malignant lesion on her tongue about two years ago at age 76. In her memoir, the tools for which her daughter, Lindsay, gifted to her a couple of Christmases ago, she described the cancer as making her sound like she’s been “hitting the margaritas.”

An oral surgeon removed the cancer, but she next faced a decision about whether to start radiation treatment. She remembers hearing in detail about how the treatment could have debilitating, painful impacts on her head.

Having already enjoyed a full life, she chose to prioritize the quality, rather than quantity, of the rest of her life. It meant forgoing radiation.

“Even if the cancer returns,” she wrote, “I do not think I will choose to do radiation or chemotherapy. At my age, I fear sickness or debilitation more than death.”

If she were younger and still had children to raise, her decision might’ve been different. She feels gratitude for the good run she’s had — from a fulfilling professional career in education to advocating for children in the court system to being a wife to husband David, a mother to Lindsay and a grandmother.

She notes she isn’t saying others should go the route she went, but thinks people who’ve lived abundant years should examine their options before immediately proceeding with unpleasant, possibly debilitating treatments.

To her, doing so risks “outliving our quality of life.”

In July, Schostag learned she had a swollen lymph node near her surgery site. A biopsy on the node misdiagnosed it as negative for cancer, giving it three months to grow before confirmation of the cancer’s return was revealed by another biopsy in October.

By then, the cancer was rapidly spreading. She again elected to forgo treatment.

Kindred spirit

Schostag was already familiar with the doula program through past presentations and had it in mind to seek out when she needed it. If people need the guidance of counselors before going to college and other important steps in life, she said, why not seek out guidance before death?

“Why not a person who’s an expert at making the best of what you have left, which is really what I see doula work as being,” she said.

She and Trembley knew each other through their church, Unitarian Universalist Fellowship of Mankato. The two met, along with David, in October to review what doula services entail and set a plan for regular meet-ups.

Having family involved and on board makes it easier, Schostag said.

“I think it’s good for families to talk about it,” she said. “We’re gonna deal with the preparations that need to be done. We’re gonna talk about what our thoughts are and what we’re scared of.”

Family and friends otherwise might not know what to say to someone facing death, creating an awkwardness of avoidance. Embracing the subject brings it to the forefront, creating space for people to say what needs to be said before it’s too late.

“It’s interesting what your demise does to other people,” Schostag said.

Doulas can help people work through what to say to their family and friends, Trembley said. They try to bridge gaps, whether the gap is a needed conversation with family or establishing a will and advanced directive.

“When you’re with somebody who likes to talk about death and dying, it’s a different conversation,” she said.

Trembley joined Schostag on her medical appointments, offering another set of ears. Although not all doulas have a medical background, Trembley’s career as a psychiatric nurse proves helpful.

The doula’s work doesn’t necessarily end when their companion’s life ends. They can be a source of comfort to the surviving family afterward.

A grieving person sometimes receives an initial outpouring of support from their social circles before people move on with their lives. Trembley sees potential in doulas continuing to offer support for as long as the surviving family needs it.

Trembley and Schostag think of themselves as kindred spirits when it comes to outlooks on life and death, which furthers their bond. Trembley described Schostag as an “amazing person” whose wealth of life experience will educate people about an important resource.

“By talking openly about death and dying and doula work, she’s helping,” she said.

Schostag’s journey took its latest turn this week when she found out her cancer had spread to her hip area. In one sense, she said after finding out, she felt “very lucky that I went as long as I did without pain.”

Her hospice team has been wonderful, she added. So has her family, friends and doula.

Shortly after starting with Trembley, someone asked Schostag about her doula.

“She’s great,” Schostag recalls responding. “She’s really into death.”

In a society so averse to conversations about death, she said, having a doula on her journey makes the end less lonely.

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