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Learning to live

— Dementia brings ‘unofficial loss’ and often leads to grieving alone

By Lauri Perman

When my teenage sister died in a car accident, friends and neighbors blessed our family with oodles of food. The large dining room table, used only on holidays, was covered with food, enough to serve all the out-of-town family members who crowded in the living room. In the aftermath of a horrific death, community support was abundant and healing, a source of comfort, both emotional and practical. Our family’s grief was recognized and honored; it was “official” grief in the eyes of the world.

This is in sharp contrast to what happens when a spouse develops dementia. In her November 2019 New York Times article, “The Loneliness of Frontotemporal Dementia,” Dr. Sara Manning Peskin quoted a spousal caregiver as saying:

“This grief is not official … Casseroles do not appear at the front door, flowers are not delivered, condolence letters are not received.”

At a time when a spouse has lost a partner, the community often retreats rather than rallies around. It’s well known that spousal caregivers end up isolated. What is less well known is that in their isolation they are grieving alone.

Their spouses are alive and yet no longer present. It is what family therapist Pauline Boss calls an “ambiguous loss.” During my husband’s long years of decline, it often felt as if someone had kidnapped him. I’d look at the stranger in the familiar body and ask myself, “Who are you? And what have you done with my husband?”

Friends disappear. At first I wondered what was wrong with us that our friends had disappeared. Then I realized it was normal and happens to most people. I learned to treasure those rare people who stayed or re-appeared. When my husband was in skilled nursing care, it was a great comfort to me when other people recognized his existence by visiting or sending him a birthday card.

To engage in conversation with someone with dementia it helps to let go of expectations. The person we once knew is no longer present. If we recognize that loss and acknowledge our grief, we are better positioned to engage with the new person before us. Visiting with someone with dementia can be an opportunity for creativity and to practice cognitive flexibility. It can be good for us, a different form of exercise and meditation.

When my husband was still well, he had a lovely dinner with his mother at a Chinese restaurant when her dementia was quite pronounced. They ordered two entrees to share. My mother-in-law took some of the first dish, declared it excellent, and then did the same with the second. Next she returned to the first dish and said, “Oh, I haven’t tried this one.” And try it again she did, once again for the first time. Each dish she tried, no matter how many times she’d tried it before, was for the first time. By the time dinner was over, my husband estimated she’d enjoyed a full Chinese banquet. He exercised cognitive flexibility in not correcting her.

If you know someone whose spouse has dementia, please reach out. Take the person to lunch and listen, really listen. Ask the spouse what he or she misses the most. Acknowledge that their life has changed, that they have had an “unofficial loss.” Sometimes it may be more helpful to take the person with dementia out for lunch or for a walk, to give the caregiver some precious alone time.

It can be especially hard to comfort a caregiver who denies their loss, and many do. This semi-heroic stance seems admirable, but the pain is present nonetheless. It’s a delicate balancing act to acknowledge both the presence and the absence of the person with dementia. Of course dementia is a gradual loss not a sudden death and the caregiver’s needs change over time and sometimes even from day to day. Staying in touch helps you know what kind of support is most helpful.

What happens when the person with dementia dies? Does the community rally around the bereaved spouse? Unfortunately no. Often the community consoles the bereaved spouse with words such as “It’s a blessing.” Or, “I know you wouldn’t have wanted him to live much longer.” Or, “He didn’t really have much of a life any more, did he?” “Now you’re free. You’ve been so burdened with caregiving.”

The spouse is denied support when the person with dementia is living and denied support again when the person with dementia is dead. We can and must do better. When someone with dementia dies, the bereaved spouse has still lost a beloved person whose death merits the same compassion any death does.

Complete Article ↪HERE↩!

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What is a dog, then?

— On the unbearable death of my dog, Polly

Robert Dessaix’s partner, Peter Timms, and their dog, Polly. ‘Our tiny mortal family. For a moment in time, together and happy.’

After 14 years, Polly was a part of Robert Dessaix’s family. One day after her death, the writer grapples with grief and what it is to love a dog

By Robert Dessaix

We are a threesome. The most wonderful thing in the world for me – the most joyful, vivifying, meaningful, precious thing in the world – is my tiny family: Peter Timms, the dog and me. We are the only family any of us has. The dog is not a child, of course, nor a mere companion, nor even our “best friend”. The dog is our dog. The dog is our anchor. We love each other, Peter and I, anchored by our dog (we’ve had four). I can see that now. It has taken me all my life to see this. And I held out my arms in front of me in utter impotence with my fingers touching to try to hold us all in.

Polly died yesterday, you see. It is unbearable. I am not saying this for the sake of it: I cannot bear the acute sadness. I cannot bear the memories of yesterday before three o’clock or last week or ten years ago or 15. I cannot bear saying goodbye to Polly Timms forever. That’s the point, as it is when we kiss or wave or say goodbye to any loved being: it’s for the rest of time.

So you will forget, while frantic to remember everything forever – the rattle of her bowl, the bed she was asleep on every morning, how she turned that corner over there every morning on her walk, squatted on that lawn, pricked up her ears at “tummy rub” and “people coming”. Yet remembering any of it causes acute anguish.

I have to say this next thing (sorry) because it is at the heart of my grief today. Polly had stopped eating – a prawn here, a biscuit there, and even a sliver of salmon three days ago at a restaurant up on a hill above the sea where you can sit outside if you like, with your dog. But really she had stopped eating. And she was retching now and again. And tired easily. I thought we could cajole her into eating. But we couldn’t. Love is not all we need at all.

So when the vet said we might want to consider if it was time to say goodbye, I started bawling. How unmanly. I was shocked. Polly was right there, bright-eyed, I stretched out my hand, she wagged her tail and came over to me. She was given two weeks if we did nothing. I had to leave the room. I sat outside the room where Peter waited with her, crying loudly and disturbing everyone in the waiting room just round the corner. And when she was being led away past me, she turned and looked at me and gave me a last wag of her tail. And then she ceased to exist. Forever. Forever. In a second.

Robert Dessaix’s dog, Polly, in front of the couch.
Robert Dessaix’s dog, Polly, in front of the couch.

This memory is unbearable today. You know why. It makes me feel sick.

It is the trust, even “unto death”. She trusted us to do the best thing for her. Why was what we did the best thing? What sort of universe is that? We had to coax her into the car to take her down to the vet’s to her death. The memory is beyond painful.

Nothing is the same today. I have never woken up in this house without finding Polly waiting for a pat. I have never spent a day here without hearing her, seeing her, moving about, going in and out of the garden. Now nothing. Just yesterday we strolled around the block, sniffing things and peeing here and there as usual. The day before she went for a walk beside the river in the sun. The day before that along a wild beach on the east coast (after that slice of salmon at the restaurant on the hill). The day before that … but it is painful to remember, it’s a kind of anguish.

Our family has lost its glue. That’s the first word I said, apart from “No”: “The glue has gone.” Peter and I are left untethered in the emptiness, we have come unstuck, for now we are sickeningly adrift.

We will recover. We all do. Just an ache will be left when we see think of Polly. And then, in some form, it will happen again.

Dogs are not people. A dog may be playful and dependent, not understanding simple things, just like a child, but a dog is not a child; a dog may always be beside you or in the backyard, with nothing to say but with a ready pleasure at seeing you come in the door, at being close, yet is not just a companion; a dog is not one of your friends, you can’t chat – although you can joke with her sometimes – nor share anything beyond the moment.

What is a dog, then? What is this being that is not really a child, companion or friend but … WHAT? Something I now see there is no word for because a dog is a different order of being – not better than a cat or parrot, but different. A soulmate, I suppose. Is that enough? A heart to give your heart to. To lose this soulmate, to surrender her to a needle one Tuesday afternoon, is indescribably painful. There is no remedy. She’s gone. My love, you see, was not enough.

It’s all too short, too fragile – and the ending is incomprehensible. How can a loved being cease to exist? There is hardly time to love a dog as you’d like, as the dog would no doubt like. I must concentrate now on noticing and loving what is present – not live in the present like a blowfly, but focus on what I can see and hear and touch and hold, not worrying about what it will all add up to mean. Magnify it somehow. But how?

Polly was a gentle dog, a self-possessed brown dog found on the street across the river from our house and taken to a refuge. When we went to the refuge all those years ago, what caught Peter’s eye was the independence of this dog in her cage, her take-it-or-leave it attitude to us, not barking or asking for attention or to be taken home, please. The morning after we took her home, before she even knew her name, I popped out of the front door to pick up the Sunday newspaper. She didn’t bother saying goodbye or thank you, she just took off up the street, looking for something more to her taste. No hurry, just determined. I rang after her in my pyjamas in a panic, calling her name, but she didn’t know it. Finally, just before we came to the main road, she hesitated and I caught her and took her home. She stayed till yesterday – 14 years, 14 years of beauty.

We all have these stories, but I can’t bear it.

She never put a foot wrong. She was kind and considerate. She didn’t bark, except at the moon when we were up at the shack in the bush. She was beautiful. She bound us together.

I am beside myself with grief, to be honest. What grief does is split you open, letting all sort of other sadnesses and dreads spill out. For instance, I don’t know what today is for. And I am crying over Peter’s coming death as well as my own, not just Polly’s death. The universe didn’t even notice my dog. Why would it? It doesn’t notice us. I can see that. We are each of us utterly of no account. I can hardly breathe.

She knew about thirty words. She wasn’t Einstein, and said nothing back, but for a moment in time we were three beings tethered happily together, knowing what the other two were feeling and wanting.

I have two photographs in my study here where I’m sitting that show Peter and Polly and, in one of them, me with them. Our tiny mortal family. For a moment in time, together and happy. I’m looking at them now.

Everyone goes through this kind of raw misery, I know, not just on battlefields but in the house across the street, and much, much worse. Nobody escapes. I first went through it when I was a toddler and a butcher-bird killed my canary in its cage on the front verandah.

Mortality and love. But I never seem to learn.

Thank you, Polly. I know you can’t hear me. But thank you from the bottom of my heart.

Complete Article ↪HERE↩!

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Meet the startup “growing” mushroom caskets and urns to “enrich life after death”

— When it comes to matters of life and death, there may be a missing key ingredient of conversation: mushrooms.

Director Lonneke Westhoff, right, and founder Bob Hendrikx, left, of Dutch startup Loop Biotech display one of the cocoon-like coffins, grown from local mushrooms and up-cycled hemp fibres, designed to dissolve into the environment amid growing demand for more sustainable burial practices, in Delft, Netherlands, Monday, May 22, 2023.

By Li Cohen

A new startup has found that fungi can go beyond filling people’s plates while they are alive. They can also be used to take care of their bodies once they’re dead. The company, Loop Biotech, is “growing” coffins and urns by combining mycelium – the root structure of mushrooms – with hemp fiber.

The founders of the company say they want to “collaborate with nature to give humanity a positive footprint,” a goal that is difficult to achieve with today’s common burial practices.

A study published last year in Chemosphere, a peer-reviewed scientific journal, found that cemeteries can be potential sources of soil and water contamination, with people in urban areas that live close to packed cemeteries are most at-risk of those effects. Heavy metals are among the pollutants that can leach into the soil and water, the study found.

And even if people opt for cremation, that process emits “several pollutants,” including carbon monoxide, nitrogen oxides and sulfur dioxide, the authors of the study said.

Shawn Harris, a U.S. investor in Loop Biotech, told the Associated Press that the startup is a way to change that situation.&

“We all have different cultures and different ways of wanting to be buried in the world. But I do think there’s a lot of us, a huge percentage of us, that would like it differently,” he said. “And it’s been very old school the same way for 50 or 100 years.”

Loop Biotech offers three options, all of which they say are “100% nature” – a “Living Cocoon” that looks like a stone casket, a “ForestBed,” which they say is the “world’s first living funeral carrier” that looks like a thin open-top casket covered with moss in its bed, and an urn for those who prefer to be cremated that comes with a plant of choice to sprout up from the ashes.

All of these items, the Dutch company says, are “grown in just 7 days” and biodegrade in only 45 days once they are buried.

“Instead of: ‘we die, we end up in the soil and that’s it,’ now there is a new story: We can enrich life after death and you can continue to thrive as a new plant or tree,” the startup’s 29-year-old founder Bob Hendrikx told the Associated Press. “It brings a new narrative in which we can be part of something bigger than ourselves.”

Along with being more environmentally friendly than traditional burials, the products are also cheaper, ranging from about $200 to just over $1,000. A metal burial casket costs, on average, $2,500, according to the National Funeral Directors Association’s 2021 report, and a cremation casket and urn combined cost an average of about $1,600. Wood burial caskets cost even more, about $3,000.

For now, Loop Biotech is making about 500 coffins or urns a month, and ships them only across Europe, the AP reported.

“It’s the Northern European countries where there is more consciousness about the environment and also where there’s autumn,” Hendrikx said. “So they know and understand the mushroom, how it works, how it’s part of the ecosystem.”

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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A Year in Uvalde

— How grief has warped the lives of the Uvalde shooting victims’ families and friends.

Uvalde, Texas.

By David Leonhardt and Lauren Jackson

The United States experiences so many mass shootings that journalists do not usually linger long after the attacks. Reporters and photographers move on to other stories, while the families and friends of the victims continue to grieve.

One year ago today, a gunman killed 19 children and two teachers at an elementary school in Uvalde, Texas. Tamir Kalifa, an independent photojournalist based in Austin, traveled to Uvalde shortly after the shootings — but he kept coming back. Tamir temporarily moved to Uvalde to live alongside the victims’ families, renting a 320-square-foot shipping container converted into a home.

We’re devoting today’s newsletter to some of the photographs Tamir has taken over the past year and to excerpts from his interviews with families.

“The grieving cycles do not match the media cycles,” Tamir told us. “We move on, but families don’t.”

Marking the holidays

Xavier “X.J.” Lopez, 10, loved Christmas. He loved going to Uvalde’s annual extravaganza, an event with light displays, decorations and holiday music. So this past Christmas — their first without XJ — his parents, Abel Lopez and Felicha Martinez, and his siblings went to honor him.

The soundtrack of a children’s choir played as they walked through the event. Then, they heard a loud blast that sounded like gunfire — an overloaded transformer had burst. Felicha had a panic attack and collapsed on the grass.

“These days are supposed to be happy,” she said later that evening. “But they are just reminders that our lives are torn apart.”

A distressed woman on the grassy ground being comforted by two others as a child stands nearby.
Felicha Martinez having a panic attack.

Swimming

The weekend before Tess Mata, 10, died, she told her older sister Faith that she wanted to learn how to swim. Faith was about to begin her senior year at Texas State University, where students jump into a river on campus as a graduation tradition. Tess wanted to take part with her big sister.

On her graduation day this month, Faith walked with her family to the river. Then she jumped in, clutching a photo of Tess. The photo was a sweet symbol — but also a painful reminder.

“Tess looks exactly like Faith,” Veronica Mata, their mother, said. “So the other day she came and she told me, she’s like, ‘I’m so sorry that you have to look at me every day and think of Tess.’”

A woman in the water holds a photograph to an outstretched hand above her.
Faith Mata

Visiting their graves

The cemetery where most of the victims are buried has become an anchor in the lives of their families and friends. They have gathered together for graveside birthdays and holidays. They mow the lawn, decorate the headstones and lie on the lush grass that has taken hold.

Caitlyne Gonzales, 11, who lost many of her friends in the shooting, comes to the cemetery to visit them. On a recent evening, she stopped by Jackie Cazares’s grave and played Taylor Swift music. She sang and danced and took selfies. For a moment, it was as if they were all together again.

A girl dancing with a phone near memorials.
Caitlyne Gonzales dancing.

Protests and vigils

Many of the parents have found purpose in activism. Brett Cross, the uncle of Uziyah Garcia, 10, who was raising him as a son, spent 10 days camped outside the school district offices in protest, alongside other family members and supporters. They demanded that school police officers be suspended over their role in the delayed response.

The protest ended when the district halted its school police department’s operations and placed two officials on leave.

A man on a makeshift cot outside.
Brett Cross protesting.

Family members have also testified before lawmakers on both the state and federal levels and protested beyond Uvalde. Tamir said that an image of Jackie Cazares’s parents, Javier and Gloria, at an annual gun violence vigil in Washington, D.C., surrounded by other survivors of gun violence, was one of the most powerful moments he’s witnessed.

“It’s important to see each of these family members as part of a nationwide network of people intimately affected by gun violence,” he said. “It’s one that is growing each day.”

A crowd of people with solemn faces holding candles.
A vigil for victims of gun violence.

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.”