What does it mean to have a ‘good death’?

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What do you see when you picture an ideal death?

Are you surrounded by friends and family members, or is the setting more intimate? Are you at a hospital or at home? Are you pain-free? Were you able to feed yourself up until your death? Is there a spiritual element to your experience?

“We talk about personal medicine, but there should be personalized death too,” said Dr. Dilip Jeste, director of the Sam and Rose Stein Institute for Research on Aging at UC San Diego School of Medicine. “Finding out what kind of death a person would like to have should not be a taboo topic.”

To help open up the conversation in our death-phobic culture, Jeste and his colleagues are working on a broad definition of a “good death” that will help healthcare workers and family members ensure that a dying person’s final moments are as comfortable and meaningful as possible.

“You can make it a positive experience for everybody,” Jeste said. “Yes, it is a sad experience, but knowing it is inevitable, let us see what we can do that will help.”

The group’s first step was to look at previously published studies that examined what constitutes a good death according to people who are dying, their family members and healthcare workers.

The results were published this week in the American Journal of Geriatric Psychiatry.

The researchers searched through two large research databases — PubMed and PsycINFO — but they were able to find only 36 articles in the last 20 years that were relevant to their work.

Jeste said the lack of studies on a good death was not surprising.

“We don’t want to deal with unpleasant things, and there is nothing good that we associate with death, so why do research on it?” he said.

The articles the team did find included studies done in the United States, Japan, the Netherlands, Iran, Israel and Turkey.

From these, they identified 11 different themes that contribute to successful dying including dignity, pain-free status, quality of life, family, emotional well being, and religiosity and spirituality. Also on the list were life completion, treatment preferences, preference for dying process, relationship with healthcare provider, and “other.”

The authors report that the most important elements of a good death differ depending on whom you ask, but there was agreement on some of them.

One hundred percent of patients and family members as well as 94% of healthcare workers said preference for the dying process — defined as getting to choose who is with you when you die, as well as where and when — is an important element of a successful death.

There was also widespread agreement that being pain-free at the time of death is an important component of successful dying. Ninety percent of family members, 85% of patients and 83% of healthcare workers mentioned it across the various studies.

Religiosity and spirituality — meeting with clergy, having faith, and receiving religious or spiritual comfort — appeared to be significantly more important to the definition of a good death by those who were dying than to family members or healthcare workers. The authors report that this theme was brought up by 65% of patients, but just 59% of healthcare workers and 50% of family members.

Family members were more concerned with the idea of dignity –defined here as being respected as an individual and having independence — at the end of life than either healthcare workers or patients were. The idea that dignity was an important element of a good death was brought up by 80% of family members, but just 61% of healthcare workers and 55% of patients.

Similarly, having a good quality of life –meaning living as usual, and believing life is worth living even at the end– was listed as an important part of a good death by 70% of family members, but just 35% of patients and 22% of healthcare workers.

“For a dying person, the concerns seem to be more existential and psychological and less physical,” Jeste said.

And here the authors see a call to action.

“Although it is important that we attend to the patient’s physical symptoms… it is crucial that the healthcare system… more closely address psychological, social and spirituality themes in the end-of-life care for both patients and families,” they write.

They also say this work is just the start of a much longer conversation.

Jeste hopes that one day terminally ill patients might receive a checklist that will help them think about and express what they consider a good death so that family members and healthcare workers can help them achieve it.

“We are not just interested in research,” Jeste said. “We are interested in improving well being.”

Complete Article HERE!

Not Taught in Med School: Interpreting Dreams of Dying People

A hospice doctor’s TEDx Talk about his research on end-of-life dreams

By Emily Gurnon

When Dr. Christopher Kerr was a young physician, he visited a patient he calls Tom, who was very ill. Outside the room, Kerr told a nurse they could try antibiotics — that Tom had more time.

“Nope, he’s dying,” the nurse replied, without even looking up.

How did she know? Kerr asked.

“Because he’s seen his deceased mother,” the nurse said.

Kerr, chief medical officer at Hospice Buffalo in New York, discovered he needed to learn more about what end-of-life experiences meant.

He then led a research team from the Palliative Care Institute in Cheektowaga, N.Y. in a long-term study on dreams and visions in the dying. Based on extensive interviews with people who were dying, they examined what their dreams and visions consisted of, whether they perceived them as positive or negative and whether the dreams might serve as a predictor of when death would come.

In October 2015, after the results were published, Kerr gave a TEDx Talk about this for an audience at  Asbury Hall at Babeville, in downtown Buffalo.

Complete Article HERE!

What the Living Can Learn by Looking Death Straight in the Eye

By Parul Sehgal

“The road to death,” the anthropologist Nigel Barley wrote, “is paved with platitudes.”

Book reviewers, I’m afraid, have played their part.

The robust literature of death and dying is clotted with our clichés. Every book is “unflinching,” “unsparing.” Somehow they are all “essential.”

Of course, many of these books are brave, and many quite beautiful. Cory Taylor’s account of her terminal cancer, “Dying: A Memoir,” is one recent standout. But so many others are possessed of a dreadful, unremarked upon sameness, and an unremitting nobility that can leave this reader feeling a bit mutinous. It’s very well to quail in front of the indomitable human spirit and all that, but is it wrong to crave some variety? I would very much like to read about a cowardly death, or one with some panache. I accept, grudgingly, that we must die (I don’t, really) but must we all do it exactly the same way?

Enter “Advice for Future Corpses (and Those Who Love Them),” by the writer, palliative-care nurse and Zen Buddhist Sallie Tisdale — a wild and brilliantly deceptive book. It is a putative guide to what happens to the body as it dies and directly after — and how to care for it. How to touch someone who is dying. (“Skin can become paper-thin, and it can tear like paper. Pressure is dangerous.”) How to carry a body and wash it. How to remove its dentures.

But in its loving, fierce specificity, this book on how to die is also a blessedly saccharine-free guide for how to live. There’s a reason Buddhist monks meditate on charnel grounds, and why Cicero said the contemplation of death was the beginning of philosophy. Tisdale has written extensively about medicine, sex and faith — but spending time with the dying has been the foundation of her ethics; it is what has taught her to understand and tolerate “ambiguity, discomfort of many kinds and intimacy — which is sometimes the most uncomfortable thing of all.”

Sallie Tisdale

It should be noted that this book is not for the queasy. Frankly, neither is dying. Tisdale writes calm but explicit descriptions of “the faint leathery smell” of dead bodies and the process of decomposition. “A dead body is alive in a new way, a busy place full of activity,” she writes. She offers paeans to the insects that arrive in stately waves to consume the body — from the blowflies that appear in the first few minutes of death to the cheese skippers, the final guests, which clean the bones of the last bits of tendon and tissue.

This is death viewed with rare familiarity, even warmth: “I saw a gerontologist I know stand by the bedside of an old woman and say with a cheerleader’s enthusiasm, ‘C’mon, Margaret. You can do it!’” Tisdale writes. She walks readers through every conceivable decision they will have to make — whether to die in the hospital or at home, how to handle morphine’s side effects and how to breathe when it becomes difficult (inhale through pursed lips).

To the caretaker, she writes: “You are the defender of modesty, privacy, silence, laughter and many other things that can be lost in the daily tasks. You are the guardian of that person’s desires.”

“Advice for Future Corpses” also offers a brisk cultural history of death rituals and rites, from traditional Tibetan sky burials to our present abundance of options. You can have your ashes mixed into fireworks, loaded into shotgun shells or pressed into a diamond. You can ask to be buried at sea (but don’t — too much paperwork). You can be buried in a suit lined with micro-organisms and mushrooms to speed decomposition, or let a Swedish company cryogenically freeze your remains and turn them into crystals. If you’re in Hong Kong or Japan, you have the option of virtual graves, where flowers can be sent by emoticon.

Tisdale’s perspective is deeply influenced by her Buddhist practice, never more so than when she considers how the mind might apprehend death as it nears: “Consciousness is no longer grounded in the body; perception and sensation are unraveling. The entire braid of the self is coming unwound in a rush. One’s point of view must change dramatically.”

Tisdale does not write to allay anxieties but to acknowledge them, and she brings death so close, in such detail and with such directness, that something unusual happens, something that feels a bit taboo. She invites not just awe or dread — but our curiosity. And why not? We are, after all, just “future corpses pretending we don’t know.”

Complete Article HERE!

‘Living While Dying,’ Cathy Zheutlin’s film explores end of life

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Filmmaker Cathy Zheutlin, right, with her mother, Jonnie Zheutlin. Cathy Zheutlin was inspired to make the film ‘Living While Dying,’ when her mother’s partner was diagnosed with terminal cancer.

“It wasn’t loss that triggered this, it was curiosity,” says filmmaker Cathy Zheutlin of her new documentary, “Living While Dying,” a short film whose subtitle reads: “A story of life. A story of death. Finding joy in the journey.” Zheutlin, who stumbled upon the good fortune of having two parents alive in their 90s, became fascinated with the idea of mortality, an inevitability we all face, despite it being hidden from view — and polite conversation, for that matter. Her exploration of the topic extends an invitation to viewers, one that hinges on conversation as the most necessary component surrounding mortality and the end-of-life choices that arise as a result. After having made its debut in Ashland and Portland, Oregon, where the filmmaker and her mother reside, Zheutlin’s film is making the rounds in the northeast; it will be screened Wednesday, June 6, at 7:30 p.m. at Kimball Farms Life Care in Lenox.

The inspiration for Zheutlin’s film came when her mother’s partner, Clair, learned he had terminal cancer. “We had a dying man in the living room,” she recalls in the film’s trailer. “I am a filmmaker so I asked Clair if I could film him; he said ‘yes,’” continues Zheutlin. This impetus, coupled with what she calls a desire to push the envelope of consciousness, led Zheutlin and her husband, Edis Jurcys, a brilliant photographer, to embark on the telling of these stories. Their exploration took them to Australia where they met a death walker, and to Bali where they saw a mass cremation. When the pair learned that dear friend Don was dying back at home, Zheutlin took “a deep dive into reflecting on death and grappling with the meaning of life.” The result is “Living While Dying.”

“This is territory that we cannot avoid,” said Zheutlin, whose work stemmed from a simple observation on her part: “So many people have so much to say [and yet] the conversation is mostly not happening.” The documentary project, a full five years in the making, catapulted her back into the world of professional filmmaking after a 32-year hiatus. She decided to pick up her camera and film four friends with terminal illnesses who chose to live out their days in hospice care at home. What ensues is a bold discussion of the inevitable, and one filmmaker’s attempt to remove the pall from a subject that, if considered from a different perspective, is but the final developmental stage in life — one to be revered and celebrated in much the same way as all those that precede it.

Jonnie Zheutlin’s partner, Clair Killen, near the end of his life.

“You can’t destroy energy, that became really clear to me,” recalls Jonnie Zheutlin of her own experience walking through end of life with her partner of 12 years, Clair. “I don’t actually fear dying,” is the elder Zheutlin’s stance on the subject. Jonnie took an OLLI class in Oregon called “Talking About Dying as If It Could Happen to You,” which she found to be both fascinating and on target — not to mention independent of her daughter’s project. This, coupled with Clair’s death, urged her on to further explore the subject. She recounts the first time Clair showed up, shortly after he died; she was looking out the window and, from the trees, this tape kept coming out. At first Jonnie thinks it’s a kite; she wonders what’s going on and then she has a realization: “The way it moved, it moved the way Clair danced — it was so clear, but I was frantic, I wanted someone to validate it,” she explains. From these experiences, a conversation between the mother-daughter pair has ensued.

“The advantage of having conversations when we are healthy is that, when we are in crisis, it’s not the time to begin thinking about all the various choices. And there are a zillion choices,” says Zheutlin. It’s the pre-thinking to support us along the way that Zheutlin hopes will inspire others to embark on a dialogue that, for many, is not welcome. In the documentary, Jonnie and her daughter model a conversation (Zheutlin is the film’s narrator) while Jonnie sits in a coffin. Zheutlin was conscious of her choice to model the conversation with her mother — who is very comfortable talking about her own EOL choices — in the presence of an image that was not terribly stereotypical. She felt the iconic images of individuals contemplating death while meandering through a cemetery to be too cliché. “That step of taking something scary and foreign and only associated with grief” proved liberating in her portrayal. She goes on to clarify: “I don’t think we should ever disassociate grief and death — it’s just that it’s not the only part [to be emphasized] because it’s natural. We somehow need to integrate it,” Zheutlin explains.

The film arises out of a grassroots movement — with titles running the gamut — that revolves around reclaiming death in much the same way baby boomers reclaimed birth. “They said, ‘let’s have our babies at home, [as] birth is not a medical event.’” Well, death isn’t necessarily a medical event, either. “Death is a natural thing that happens at the end of every single life. It’s 100 percent going to happen,” Zheutlin reminds her audience. But we don’t get to see the images of nonmedicalized death; this is where Zheutlin comes in. “Living While Dying” offers viewers a glimpse of what death looks like when one goes the nonmedical route and chooses hospice at home. “My experience is not prescriptive or comprehensive; everybody’s experience is going to be unique and important and worthy of being uplifted,” Zheutlin said. “I’m not promoting an ideology, I’m promoting a conversation,” she says of her intensely personal approach. One thing is certain: Death is somehow less scary after viewing this film. “It’s not articulated, but it’s felt,” Zheutlin explains. As for Jonnie Zheutlin’s last word on the topic? “I used to have cement in my mouth,” she says, borrowing a term she once heard a child use in her days as a therapist. “I am learning to verbalize; it’s taken me almost 90 years to learn to use my voice,” she jokes, adding “Thank God I’ve lived long enough to do that!”

Zheutlin’s film has been hailed as a brave and honest immersion in a difficult topic. In her director’s statement, she cuts straight to the chase: “Death is a teacher. Many of us are scared of death. We feel unprepared both for our own deaths and the deaths of people (and animals!) we love. Our associations with death are morbid, dark, cold, depressing, and laden with grief and pain. So we do not talk much about death. In modern times, we have medicalized the end of life, and disconnected it from nature. In trying to prolong life by any means necessary, we only succeed in keeping death shrouded in darkness. By keeping our distance from death, cloaking it, hiding our eyes from it, we actually lose touch with a sacred phase of life. Because, as we all know, death is a part of life — for all of us.”

Director-producer Zheutlin has been principal cinematographer on award-winning PBS documentaries including “The Life and Times of Rosie the Riveter,” “The Other Philadelphia Story” and the 1982 Academy Award nominee “See What I Say.” Her 1986 documentary “Just One Step: The Great Peace March” led to a co-production with Soviet TV about the first Soviet-American peace walk. In short, she has spent her career making films that explore consciousness and encourage progressive change. Her documentary “Living While Dying” was an official selection for the THIRD ACTion Film Festival, which celebrates aging and older adults while helping to create an age-positive culture shift. For more information, visit www.livingwhiledying.org.

Complete Article HERE!

How Death Positivity Helps Me Mourn The Living

By: Lola Phoenix

[T]here are many ways that death has followed me throughout my life. I was born with my umbilical cord wrapped around my throat and a disability nearly caused my death several times as an infant. When I was three and I stopped growing, my growth hormone, before it was made in a lab, was taken from cadavers.

Fearing death dominated my childhood so much that I became extremely paranoid. Growing up with a gay parent and hearing about Matthew Shepard, I had to trust the friends I brought home into my life. Already having been bullied in school for supposedly being a lesbian, I didn’t want to give them any reason to escalate the harassment physically. While I know I’m not personally going to be targeted, the spectre of death is ever present.

But so much of death is about mourning people who have died, when, for LGBTQ people especially, there is a kind of death that is not really discussed, explored or acknowledged—the death and mourning of the living. Estrangement grief is a thing, and it’s complicated to mourn a person who is not dead.

Death positivity” is about coming face to face with mortality and, instead of fearing and ignoring it, embracing it. I came across this movement through the “Ask A Mortician” channel on YouTube run by Caitlin Doughty, who is also behind the death positivity movement Order of The Good Death. Fundamentally, death positivity is about challenging the way our society views death and creating a culture that allows people to be more prepared and ready to make the difficult choices around death that they may be avoiding.

All around the globe, people have signed up to be part of The Order of The Good Death, and this may mean something as simple as taking an active interest in making end of life wishes to educating people locally about burial options to campaigning in local government for options such as water cremation, which aren’t available in all areas.

The process of becoming death positive is about embracing the realities that lie at the end of my life, it also has helped me embrace several lessons that have helped me live my life.

I am estranged from both of my parents: one of them disowned me and the other has mental health problems that make a relationship between us difficult. Other family members either don’t show very much interest in me or, when I have attempted to reach out for support, have either not responded or told me they were tired of “weird.” As someone who has always felt quite strongly about family ties, these losses were difficult to endure. But the lessons I have learned through death positivity have made them much easier to cope with.

1. Sadness is not shameful.

This seems obvious, but it isn’t. Part of death positivity encourages people to think about what choices they want for their bodies after death. That got me thinking about the complex way I’ve felt about funerals I’ve been to—how cold and incredibly formal they’ve felt and how awkward it was to express strong emotions in austere settings. I decided I didn’t want the people I left behind to feel how I felt. I wanted them to feel like being sad was okay. And in doing so, I had to tell myself that it was okay not only for the people who lost me to mourn, but for myself to mourn the people I have lost.

Estrangement isn’t always permanent, but holding on to the hope of change in many instances can end up causing more pain than it’s worth. It may seem on the outside that your estranged relative has more of a chance of coming back into your life than a dead relative, but that isn’t true for everyone.

Giving others the space to grieve helped me understand that it was okay for me to grieve. At least now when I mourn the loss of people in my life, I can accept that I have these feelings and not fight against them.

2. Grief and recovery aren’t linear.

In thinking about how I wanted to prepare as much as possible for my loved ones before I die so that they don’t have to stumble around in the process of grief, I had to come to understand it more. Despite the presence of death and loss in my life, there have been few family members I have actually felt sadness at losing. My mother was 18 when she had me and her mother was 18 when she had her, so I have a relatively young family. I lost my grandfather and step-grandfather when I was in high school, but I knew both of these men as abusers of my mother.

When they passed, I wasn’t even remotely sad. Many of my great uncles and aunts had passed, and I lost a second cousin to a tragic accident, but I didn’t have very close relationships with these people. It was when my great grandmother died in 2013 and I didn’t have the money to fly home and attend her funeral that I came face to face with my biggest loss.

One of Caitlin’s videos talks about the reasons people fear death, and one of them is the impact it will have on their loved ones. Much of what I suspected from both Caitlin’s videos and the crowdfunders I’ve contributed to for funeral costs spelled out the reality of the impact “traditional” funeral homes and their soaring prices can have on families. I had to understand that grief is expressed in so many different ways and it’s not as simple as “letting it go.”

In the case of my great grandmother, losing her felt so odd and numb that I had almost no emotion when I heard the news that she had passed away. She was 98 years old and the morning I got the news, I’d had a funny feeling that she was gone. Without having ever experienced a massive loss, I didn’t at the time know what was normal. And I secretly felt ashamed that I hadn’t shed many tears, though I told nobody.

Years after her death, I was trying to recall how she made biscuits every Sunday morning for breakfast. My mind walked through the process of her pouring flour and lard on her biscuit pan, but there was a lot I couldn’t remember. When it occurred to me that I couldn’t ask her anymore, something broke in me and I finally cried. After being active in Death Positive communities, I knew and understood that grief wasn’t linear and that sometimes the sadness comes and goes when it wants.

Likewise, I stopped telling myself to “let it go” when I was grieving estrangement from my parents. When you experience a loss, you have good days and you have bad days. Thinking about my own death and preparing for it meant thinking about what my loved ones would go through in their grief. I would never expect them to just stop feeling their feelings, so why should I expect my feelings to suddenly go away?

3. Celebrate the time you have.

The Order of the Good Death may sound very morbid and odd to some. But in her videos, Doughty points out that “the good death” is not about failure if you don’t plan, but about the idea that avoiding conversations about death ultimately means much more hardship than addressing it at all.

Facing my own mortality in a healthy way encourages me to actually take advantage of the time I have. When death becomes something that moves from being in the unknown, terrifying and looming but never addressed to being looked at, planned for, and understood, that also means that you’re more likely to take advantage of life.

Loss and grief become part of the process of death and equally part of the process of life. When I learned to address the fact that all life will end including my own, it felt easier to for me to cope with the idea that several of the relationships I once valued and held dear in my life were also at an end—and that’s okay. And what’s more, it’s helped me appreciate what time I do have and know not to waste it on people who hurt me or don’t respect me for who I am.

Death positivity may sound like a bizarre notion, especially as a queer person and a disabled person fighting in many instances to stay alive. It’s not about wanting to be dead. It’s not about being happy about dying. But it’s about facing the reality of death in a way that isn’t the paranoia and fear I’ve had sit heavy on my shoulders.

And doing so has helped me cope with what a lot of other people like me go through when we lose a family member either because of our own identities or because of their inability to accept and see us for who we are in a loving and positive way. Reckoning with the face of grief and mourning has given me tools to use to cope with a different but also painful kind of loss.

Because I embrace the fact that I will die, I live better.

Complete Article HERE!

Breaking the silence: are we getting better at talking about death?

As the media brings us constant news of strangers’ deaths, grief memoirs fill our shelves and dramatic meditations are performed to big crowds, we have reached a new understanding of mortality, says Edmund de Waal

A 2016 performance of An Occupation of Loss. Artist Taryn Simon gathered professional mourners from 15 countries to demonstrate how they perform grief.

[B]ereavement is ragged. The papers are full of a child’s last months, the protests outside hospitals, the press conferences, court cases, international entreaties, the noise of vituperation and outrage at the end of a life. A memorial after a violent death is put up on a suburban fence. It is torn down, then restored. This funeral in south London becomes spectacle: the cortege goes round and round the streets. The mourners throw eggs at the press. On the radio a grieving mother talks of the death of her young son, pleading for an end to violence. This is the death that will make a difference. She is speaking to her son, speaking for her son. Her words slip between the tenses.

Having spent the last nine months reading books submitted for the Wellcome book prize, celebrating writing on medicine, health and “what it is to be human”, it has become clear to me that we are living through an extraordinary moment where we are much possessed by death. Death is the most private and personal of our acts, our own solitariness is total at the moment of departure. But the ways in which we talk about death, the registers of our expressions of grief or our silences about the process of dying are part of a complex public space.

Some are explorations of the rituals of mourning, how an amplification of loss in the company of others – the connection to others’ grief – can allow a voicing of what you might not be able to voice yourself. The actor and writer Natasha Gordon’s play about her familial Jamaican extended wake, Nine Night, is coming to the end of a successful run at the National Theatre. The nine nights of the wake are a theatre of remembrance, a highly codified period of time shaped to allow the deceased to leave the family.

Theatre of remembrance … Hattie Ladbury and Franc Ashman in Nine Night, Natasha Gordon’s play about a Jamaican wake.

Julia Samuel records in Grief Works, her remarkable book of stories of bereavement, a woman who “asked friends and family to sit shiva [the Jewish mourning tradition] with me at a certain time and place”. And that there was anguish when these particular times were ignored: two friends came at times that were “convenient for them rather than when she was sitting shiva, thus ‘raising all the issues I was temporarily trying to keep contained’”.

As an academic writes in the accompanying notes to artist Taryn Simon’s performance An Occupation of Loss, recently staged in London, “communication between the living and the dead is possible only in mediated forms”. There are obligations we have to fulfil to those who have died. Simon gathered professional mourners from 15 countries (Ghana, Cambodia, Armenia and Ecuador, among others). The mourners wailed and sobbed and keened, the intensity of their expression, their sheer volume, a challenge to the idea that there has to be a silence that surrounds bereavement.

There are silences. Contemporary books on death often take as their premise that to be writing in the first place is a breaking of a taboo. “It’s time to talk about dying,” writes Kathryn Mannix in her book about her work in palliative care, With the End in Mind. “There are only two days with fewer than 24 hours in each lifetime, sitting like bookmarks astride our lives: one is celebrated every year, yet it is the other that makes us see living as precious.” These books record the silence that we in the west have created. By removing dying into a medical context, where expertise and knowledge lie so emphatically with others, we have made death unusual, a process clouded by incomprehension. And by novelty.

So one kind of language we need is that of clarity. A lucidity that allows for the involvement of family and friends alongside healthcare professionals. Clarity, writes Mannix, around the questions such as “when does a treatment that was begun to save a life become an interference that is simply prolonging death? People who are found to be dying despite the best efforts of a hospital admission can only express a choice if the hospital is clear about their outlook.” Conversations about palliative care need extraordinary skill and empathy. These are skills that can be learned.

But for someone writing about their own grief, there are no guidelines. You might have read Thomas Browne’s Urn Burial, or the poems of John Donne, the theories of John Bowlby or Donald Winnicott, Freud’s Mourning and Melancholia, but it simply doesn’t register. Being well read doesn’t help when someone who matters dies. Part of this attempt to start again, to find a form out of the formlessness of grief, is a reluctance to take on the generic language of sympathy, the homogeneous effect of cliche. Bereavement is bereavement, not a masterclass in being well read in the classics. “The death of a loved one is also the death of a private, whole, personal and unique culture, with its own special language and its own secret, and it will never be again, nor will there be another like it,” writes David Grossman in Falling Out of Time, his novel about the death of his son. A death needs a special language.

The language of loss and the framing of sympathy in everyday life is so impoverished, so mired in cliche and euphemism, that deep metaphors of “passing” become thinned to nothing, to sentimentality. The iterations of “losing the battle” and the valorising, endlessly, of “courage” is a way of making the bereaved feel they need to enact a particular role. And then there is the “being strong”. If you are told how wonderful you are for not showing emotion, or for continuing as before, where does that leave being scared? How about denial? Or anger, terror, desolation, loneliness? How about confusion? Why only endurance, resilience, strength? In this need to name, to find precision, accuracy is a measure of love. I think of Marion Coutts’ book The Iceberg, on her dying husband Tom Lubbock’s language, Joan Didion’s The Year of Magical Thinking, charting everything, weighing her responses to her grief. This is different, they say, writing this is a work of mourning.

The greatest of these books find a language that encompasses the sheer confusion of bereavement. In her forthcoming book Everyday Madness: On Grief, Anger, Loss and Love, Lisa Appignanesi writes that “Death, like desire, tears you out of your recognisable self. It tears you apart. That you was all mixed up with the other. And both of you have disappeared. The I who speaks, like the I who tells this story, is no longer reliable.” This is the other loss, that of selfhood, of control, of a forward momentum, of certainty. Appignanesi’s grief at the untimeliness of her husband’s death makes time itself deranged. Her days and weeks and months go awry. Her sense of the past is also called into question. It is excoriating: “My lived past, which had been lived as a double act, had been ransacked, stolen.” Bereavement, she notes, has a deep etymology of plunder. It tears you apart. Where all these registers go wrong, you oscillate between kinds of behaviour that are disinhibited, a derangement of self. It can be physical, a falling, a losing your way. I think of the crow in Max Porter’s Grief Is the Thing with Feathers as the deranged, ransacking presence in a family where the mother has died.

A deranged, ransacking presence’ … Cillian Murphy in Grief Is the Thing with Feathers.

These are images that go deep into history. In the Book of Lamentations we read that God “has made me dwell in darkness … he has walled me in and I cannot break out … He has weighed me down with chains … He has made my path a maze … He has forced me off my way and mangled me.” The Hebrew word eikh (how) opens the Book of Lamentations and then reappears throughout the text. This how is not a question, more a bewildered exhortation. You are beyond questions. All you can do is repeat.

In Anne Carson’s poem Nox, a response to the death of her brother, she refused to accept any conventional form. So the poem comes like a box, a casket, of fragments, attempts at definitions, parts of memories. This seems appropriate. The shape of grief is different each time. That is why the shard – the pieces of broken pottery that are ubiquitous across all cultures – is often used as an expressive image of loss. Think of Job lamenting to God, sitting on a pile of broken shards. In my own practice as a potter, whenever I pick up pieces of a dropped vessel I notice that each shard has its own particularity. Each hurts.

In her study of the deaths of writers, The Violet Hour, Katie Roiphe writes that “moving on, as a concept, is for stupid people, because any sensible person knows grief is a long-term project. I refuse to rush. The pain that is thrust upon us let no man slow or speed or fix.” Bereavement takes a pathway that is different for each and every one of us. It takes different registers, different words. And that is what I take away from this very particular nine months of reading and reflecting on mortality. That there is change in the public space around death. This change is remarkable and wonderful when it comes to end-of-life care: the hospice movement and the training in palliative care are one of the greatest and most compassionate changes to occur in the last 30 years.

And, more slowly, it is happening outside the hospitals and clinics and hospices. People do want to read and talk about grief. For this we have to be grateful to those writers who are trying to find their own shard-like languages to express their own bereavements.

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