Death: why children should be taught about it in school

Children become aware of death from an early age.

By

Have you ever thought about how you’d like your funeral to be? Or what dying might feel like? Or what should happen to your body?

If you’re anything like the majority of people living in the Western world, chances are you haven’t given much thought to how you’d like to die. Or even spoken much about the topic in general.

Although we all know it’s going to happen, dying remains one of those things people still don’t want to discuss. And in a culture that embraces and celebrates youth, very few in the West want to face up to their mortality or risk being seen as macabre or morbid.

But with an ageing population and the UK’s NHS struggling to cope with demand, people need to start planning for their own end of life care earlier. Perhaps, then, the UK should follow Australia’s thinking and start getting dying on the agenda early – by teaching kids about it in school.

The Australian Medical Association Queensland has proposed that death should be built into the school curriculum. If this proposal is accepted, Australia will lead many developed Western nations in tackling the public discomfort and avoidance of death.

Death education

In the UK, 70% of people wish to die at home, but 50% actually die in hospital. In Australia, only about 10% of people die at home – most die in hospital – despite the fact that the majority of Australians say they would prefer to die at home.

How people, especially the young, understand death is often heavily influenced by films and TV where it is often scarier than the reality. To try and address this issue and get people talking about death before it’s too late, Australian doctors are keen to see the subject taught in classrooms. They argue that death would be less traumatic and people would be able to make more informed decisions if palliative care and euthanasia were spoken about more openly.

In practical terms, schools could easily build death into existing subjects. In biology, for example, the processes of death and dying could be covered from a practical perspective, while in citizenship, students could learn how to draw up a will and look at the legal and ethical debates over what mental and physical capacity means.

Death denial

A variety of organisations and lobbying groups are already making headway in getting people to talk more openly about death. The death cafe movement has encouraged people to talk about death and dying over tea and cake in 56 countries. The Order of the Good Death, led by mortician, author and founder Caitlin Doughty, takes an online approach to promote the idea of making death part of life. Meanwhile, the annual UK Dying Matters Awareness Week provides a programme of events supporting the vision that dying does matter and needs to be talked about.

Children begin to grasp death’s finality around the age of four.

Such movements are making important inroads into challenging the public wisdom that “death is taboo”. But there remains a significant proportion of people who do not want to talk about death. It is this cultural trend that embodies what death scholars refer to as “death denial”.

A key problem with death denial is that individual wishes for end of life care are not considered until late on. And the result is that people struggle to achieve a good death, and often don’t have their wishes considered.

Dying talk

Educating the young about death and dying, then, offers the opportunity to challenge the unwanted consequences of not talking – which, according to the Dying Matters coalition, includes the family not knowing how to best help or support their dying loved one, the dying person feeling frightened and distressed, and the issue of people dying without a will – leaving the family unsure about funeral wishes.

New efforts need to be made to demystify death and dying. And there’s more to it than simply getting people to talk about death – although this is a positive step. Directly educating the younger generation is an important shift towards empowering people to understand the interplay between law, medicine and ethical issues surrounding death and dying.

By creating transparency through education, death, dying and the disposal of the dead can all become part of the everyday. And by normalising death within schools, it may well be that students can help their families to fear less and make more informed decisions about the end of their lives.

Complete Article HERE!

5 Life Lessons From End-of-Life Experts

Make sure to do these things while you are still able

By Lisa Fields

You’ve heard it countless times: Life is short, so appreciate each moment.

People with life-limiting diagnoses know this intimately: When they come to terms with their mortality, their priorities often change, and they may try to squeeze as much substance into their lives as they can. This often involves trying to resolve long-standing problems with loved ones and strengthening important relationships.

Very few healthy people live this way, though. We get caught up in the details of our busy lives and often forget to put things in perspective, believing that we’ll have time to sort everything out. But end-of-life experts believe that everyone should adopt some of the attitudes and values that dying patients embrace.

“It’s easy to put something off into the future,” says John Mastrojohn III, chief operating officer of the National Hospice and Palliative Care Organization. “For some, that future may not be as long as we’d like. Having meaningful conversations, or doing other things that bring joy, can have a profound impact on how we feel about ourselves and others.”

You may be inclined to delay these types of conversations if you don’t sense an imminent need. But they can positively impact your relationships and help you realize what’s most important.

“Those of us who work with people who are seriously ill have found that [saying] ‘Please forgive me,’ ‘I forgive you,’ ‘Thank you’ and ‘I love you’ — that almost always has value to people, whether relationships are fractured or strong,” says Dr. Ira Byock, a palliative care physician in Torrance, Calif., and author of The Four Things That Matter Most.

End-of-life experts believe that the following advice — which they often share with patients who are in the final weeks or months of their lives — is surprisingly well-suited for active, healthy people, too:

1. Adjust Your Priorities

You may take your friends and relatives for granted because you’re focused on a work project, your upcoming kitchen renovation or the number of “likes” that you received on a Facebook post. But it’s important to periodically stop to appreciate the meaningful relationships in your life.

“The things that matter most to people aren’t things; they’re other people,” Byock says. “Ask somebody who’s facing cancer or chemotherapy for the third or fourth time what matters, and the answer they give will always include the names of people they love.”

2. Make Time for Loved Ones

Your schedule may make it difficult to see friends or relatives as often as you’d like, but you can change that. Giving priority to your most important relationships should make you feel less frazzled and more grounded.

“There is not a single seriously ill patient I know that worries about all the current items populating their calendar when they receive a life-threatening diagnosis — their thoughts go immediately to their time with those they love,” says Dr. Cory Ingram, a palliative-care physician at the Mayo Clinic in Rochester, Minn. “There are some things in life to postpone; however, relationships with those who matter aren’t on that list.”

3. Have Meaningful Conversations

Most people don’t apologize, seek forgiveness, offer gratitude or extend feelings of love to their closest friends and family members on a regular basis. They may believe that their feelings are tacitly understood by their loved ones. Or they may feel that the topics are too significant to broach in everyday conversation, so they keep their feelings inside.

But putting words to your feelings can boost your relationships significantly. It’s particularly important for parents who may not have shared their thoughts with their children — especially adult children.

“It’s worth taking the time to sit with each of your children and let them know how proud you are to be their mom or dad,” Byock says. “[Or tell them] ‘I love you more than I can say.’ Who else on this planet can give that gift in your voice? I’ve counseled many children who were crying after the death of a parent, who never heard words of that nature. Some of those children were in their 60s.”

4. Don’t Hesitate to Share Deep Feelings

In many families, people don’t discuss emotions unless there’s a crisis, but you can work to change that. Consider how you’d feel if you or a loved one died suddenly, before you had the chance to share what was in your heart. Revealing your feelings can help to alleviate that sentiment and bring you closer.

“Some people say, ‘My kids know that I love them,’” Byock says. “’I say, ‘Great! Then it will be easy for you to say it.’ No excuses and no mumbling.”

It can be particularly difficult for some men to talk about their feelings, especially if they’ve maintained a gruff, stoic reputation. But once they open up, their words can deeply move the people in their lives.

“Most of them aren’t so tough — they just learned to cloak their feelings in a hard shell,” Byock says. “We guys aren’t as verbal about our emotions. We have emotions. We just don’t talk about them. Talking about this stuff can be very impactful.”

5. Prepare for the Worst

Many terminally ill people create advance directives, which are documents that name a loved one to make medical decisions on their behalf in case they are ever unable to speak for themselves.

But two-thirds of healthy people don’t have advance directives, perhaps because it requires them to consider their own mortality. Advance directives are invaluable for everyone, however, since we never know what may happen.

“It’s a way of taking care of your family,” Byock says. “I have an advance directive. Not because I have a serious illness, but because I have a family. I’m a dad, and if I’m in a car accident or have a stroke, if my wife and daughters would struggle, I can give one of them clear authority to speak for me, with no ambiguity. I can give them some sense of what I think I want, to lift a little bit off their shoulders.”

After you designate someone to speak on your behalf, let them know.

“Completing the document is only part of the requirement,” Ingram says. “The real work of completing an advance directive is having a conversation about your values, preferences and priorities for health care with those you named.”

Complete Article HERE!

Many physicians not prepared for end-of-life talks with patients

While nearly all physicians say end-of-life conversations are important, many report lacking the training to have such conversations, according to a brief report published online May 23 in the Journal of the American Geriatrics Society.

Terry Fulmer, Ph.D., from the John A. Hartford Foundation in New York City, and colleagues conducted a 37-item telephone survey to measure attitudes and perceptions of barriers and facilitators to advance care planning among 736 physicians (primary care specialists; pulmonology, cardiology, oncology subspecialists) regularly seeing patients aged ≥65 years.

The researchers found that 99 percent of respondents agreed that it is important to have end-of-life conversations, yet only 29 percent reported that they have received formal training for such conversations. Younger physicians and those caring for a racially and ethnically diverse population were more likely to have had training. The strongest motivating factors in having advance care planning conversations were patient values and preferences. The vast majority of respondents (95 percent) reported supporting a new Medicare fee-for-service benefit reimbursing advance care planning. Time was the biggest barrier reported to advance care planning, as well as not wanting a patient to give up hope and feeling uncomfortable.

“Given the gap between what people want at the end of life and the care they receive, we need to build on available training tools and embed them systematically into practice,” the authors write. “Addressing clinician barriers to to meet the needs of their older and families requires the integration of existing, proven tools into a three-pronged strategy that includes education and , formal systems, and reimbursement for these critical conversations.”

Complete Article HERE!

Other Options to Hasten Your Death

Voluntary Stopping of Eating and Drinking (VSED)

To voluntarily stop eating and drinking means to refuse all food and liquids, including those taken through a feeding tube, with the understanding that doing so will hasten death. This is an option for people with terminal or life-limiting diseases who feel that with VSED their dying will not be prolonged. One of the advantages of this decision is that you may change your mind at any time and resume eating and drinking.

The US Supreme Court has affirmed the right of a competent individual to refuse medical therapies and this includes food and fluids. This choice is also commonly accepted in the medical community.

Before You Start

You must prepare to voluntarily stop eating and drinking. It’s not something that can or should be started the day it is first discussed.

  1. Talk with your physician to let them know of your plans. Talk with your physician about all your medications, and ask if a sedative or pain medication will be available to keep you comfortable.
  2. Complete an Advance Directive stating in writing that voluntarily stopping eating and drinking is your wish. Have your physician sign orders to withhold life-sustaining therapies and all resuscitation efforts.
  3. Talk with friends and family members who might care for you during this process early about your wishes and why you may want to take this course. Their support is crucial. However, beware that for many people families are often opposed to VSED and can pose a barrier.
  4. Finalize your business and financial affairs, make funeral and memorial plans, and gather your family members to share memories and say your good-byes.
  5. If you reside in a care facility, discuss your wishes with the staff and nursing director. You will need the staff to provide support and assistance.
  6. If you are already receiving hospice care, your team can help you prepare. If you are not on hospice, ask your physician for a referral to a local hospice provider. Usually hospice will provide supportive care once you start the process.
  7. If your illness is not one that is likely to cause death within six months, arrange for a psychological evaluation for depression and decision-making capacity by a mental health provider. This will reassure family, physicians, and others that your mental status is sound and this decision well considered.

Process

You can live for a long time without eating, but dehydration (lack of fluids) speeds up the dying process. Dying from dehydration is generally not uncomfortable once the initial feelings of thirst subside. If you stop eating and drinking, death can occur as early as a few days, though for most people, approximately ten days is the norm. In rare instances, the process can take as long as several weeks. It depends on your age, illness, and nutritional status.

At first, you will feel the same as you did before starting VSED. After a few days your energy levels will decrease and you will become less mentally alert and more sleepy. Most people begin to go in and out of consciousness by the third day and later become unarousable. Hunger pangs and thirst may occur the first day, but these sensations are usually tolerable; discomfort can be alleviated with mild sedatives or other techniques such as mouth swabs, lip balm and cool water rinses.

Since dehydration will most likely be the cause of death, it is important not to drink anything once you start. Even sips of water may prolong the dying process.

I wish I could say [my father] died a gentle death. But I’m not so sure. I wish doctor-assisted death had been available to my father. I believe it is what he would have wanted.

—Christopher Stookey, MD

We recommend that all medications be stopped except for those for pain or other discomfort. Stopping medications for heart problems or diabetes, for example, may speed up the process.

Finally, one of the advantages of VSED is that you may change your mind at any time and resume eating and drinking.

People who begin this process often express a sense of peace that they can finally “stop fighting.” Some people describe a sense of euphoria or pleasant lightheadedness. There is an analgesic effect caused by dehydration that may explain this response. With dehydration, people often need less pain medication, urinate less, have less vomiting, and breathe more easily due to decreased congestion.

Resources

  • Read this story, in which Christopher Stookey recounts his father’s death by voluntarily stopping eating and drinking.
  • Browse peer-reviewed, academic-journal articles on the subject.
  • Watch this video, in which Phyllis Shacter describes her husband’s dying after he decided to voluntarily stop eating and drinking:

 


 

Note: With the exception of quotes, information in the following sections has been adopted from End of Life Washington.

Not Starting, or Stopping Treatment

For some terminally ill people, aggressive medical treatment may not be helpful and may prolong the dying process without improving quality of life. Under certain circumstances, treatments can increase suffering, ruin the remaining quality of life, or even shorten life.

Stopping treatment can result in a peaceful death but it may also result in increased discomfort. Consult with your physician and arrange for optimal palliative (comfort) care before stopping treatment.

Stopping treatment can be combined with hospice and palliative care or voluntary stopping eating and drinking to shorten the dying process and reduce suffering.

Palliative Sedation

For dying people experiencing so much pain or unmanageable symptoms that they cannot get relief from medications unless the dose is high enough to make them unconscious, palliative sedation provides enough medication to keep them continuously unconscious and thereby free of pain and symptoms. All nutrition and hydration is stopped, and they usually die within a few days.

People using palliative sedation should be monitored around the clock to be sure the sedation is adequate. While this intensive monitoring can sometimes be provided in the home, it is usually provided in a skilled nursing or inpatient hospice facility.

Many [people] claim that palliative sedation effectively eases the suffering of patients when other means fail to do so. However, it is an unacceptable option for most terminally ill adults whose primary concerns are losing autonomy, quality of life and their dignity.

—Ann Jackson

While palliative sedation is an ethical and legal end-of-life option, it is not necessarily a right. While you can request palliative sedation, it is up to the medical provider to determine if it is appropriate. Some physicians and hospices are reluctant or unwilling to authorize palliative sedation. If having the option of palliative sedation is important to you, discuss it with your hospice or other medical provider well before it becomes necessary.

Complete Article HERE!

A Burial Practice That Nourishes The Planet

Here’s a question we all have to answer sooner or later: What do you want to happen to your body when you die? Funeral director Caitlin Doughty explores new ways to prepare us for inevitable mortality. In this thoughtful talk, learn more about ideas for burial (like “recomposting” and “conservation burial”) that return our bodies back to the earth in an eco-friendly, humble and self-aware way.

 

 

Everything You Need to Know about Thanatophobia- The Fear of Death

By Nancy Walker

[D]eath anxiety is not a distinct disorder but might be connected to problems of anxiety and depression such as:

  • Panic disorders
  • Panic attacks
  • Post-traumatic stress disorder PTSD
  • Hypochondriasis

Thanatophobia is quite different from necrophobia, which refers to a general fear of the dead or dying things, or anything that is linked with death.

In this article, we will discuss thanatophobia or death anxiety, explore the signs and symptom, reasons, and treatments for this problem.

What is Thanatophobia?

The word thanatophobia has been derived from two Greek words, Thanatos meaning death, and Phobos meaning fear. Hence, thanatophobia means the fear of death.

Being anxious about death is quite normal and a part of human behavior. However, in some cases, people may suffer from an intense form of fear or anxiety when they think about their own death or the process of dying in general.

A person may feel extreme fear and anxiety when they think that their death is inevitable. Other than this, they are also likely to experience the following symptoms:

  • Fear of separation
  • Worry about leaving the dear ones behind
  • Fear of suffering from a loss

When these fears and disruptive thoughts become so intense that they stop the sufferer from performing his daily activities, this condition is known as thanatophobia.

In the most severe forms, these feelings can hinder the patients from living their lives and performing daily activities. Their fears tend to center on things that may cause death such dangerous objects or contamination.

Diagnosing Thanatophobia

Doctors do not consider thanatophobia as a separate condition, however, it can be considered as a specific phobia.

As per the Diagnostic and Statistical Manual of Mental Disorders, a phobia refers to an anxiety disorder that relates to a specific situation or an object.

The fear of death may be considered as a phobia if it:

  • Arises every time the person wonders about dying
  • Continues to persist for a period of more than 6 months
  • Interferes with the life and relationships of the patients

Some of the key symptoms that a person is suffering from a phobia of dying include:

  • Immediate anxiety or fear when thinking about the process of dying
  • Panic attacks that may lead to hot flushes, dizziness, sweating, and increased heart rate
  • Avoiding situations where the concept of death or dying is discussed
  • Feeling pain in stomach or general sickness when thinking about dying
  • A general feeling of anxiety or depression

Phobias may lead to a person feeling extremely isolated and avoiding any contact with family and friends for long periods of time.

The symptoms may come and go throughout the entire life of an individual. Someone suffering from a mild form of death anxiety can feel their anxiety heightening when they think about their own death or the death of a loved one, particularly when he himself or any family member is seriously sick.

If the death anxiety is connected to another depressive condition, the patient is likely to suffer from the symptoms related to that particular disorder as well.

Types and Causes of Thanatophobia

While thanatophobia refers to the general fear of death, there are a lot of types of this disorder which depends on what the patient is focusing on.

Phobias are often experienced by a specific event occurred in the patient’s past, even though the person does not always remember it. Some particular triggers that lead to thanatophobia include a traumatic event related to the near death of self or a loved one.

A person who is suffering from a severe illness has a high risk of developing thanatophobia. This is because chronic patients are always anxious about dying, however, ill health is not necessary for someone to experience death anxiety.

Most of the time, thanatophobia is related to psychological illness.

The experience of thanatophobia may differ from person to person and mainly depends upon individual factors like:

  • Age: A study performed in 2017 suggested that older adults are more likely to experience the process of dying as compared to the younger ones who fear death itself.
  • Sex: As per a 2012 research, women are more likely to suffer from the fear of death, which may be their own or that of a loved one.

It is common for the medical professionals to connect anxiety near death to a range of different mental illnesses such as PTSD, depressive disorders, and anxiety.

How to Treat Thanatophobia

Social support networks can help protect a person from thanatophobia. Some people are likely to come to terms with their deaths with the help of their religious beliefs but this may perpetuate the anxiety related to death in others.

People enjoying a good health, high self-esteem, and a belief that they have spent a fulfilling life are less likely to fear their death as compared to others.

A doctor usually recommends a person suffering from thanatophobia to receive a treatment for phobia, anxiety, or any other problem that may be triggering this fear. The treatment involves a talking or behavioral therapy. These therapies teach the individuals to focus on their fears and work through them by expressing their concerns.

The treatment options for thanatophobia usually include:

Cognitive Behavioral Therapy

Cognitive behavioral therapy or CBT includes working with the patient in order to alter his behavioral patterns in such a way that he adopts newer ways of thinking.

In this therapy, the doctor works in collaboration with the patient to come up with practical solutions in order to overcome the anxiety and depression. This eventually leads to the development of strategies that make the patient unafraid and relatively calm when he talks or thinks about death.

Exposure Therapy

Exposure therapy works by helping someone face their fears. Instead of suppressing the feelings of death in a person, this therapy encourages the patients to expose them and acknowledge them.

A therapist will work very carefully in order to expose a person to his fears but ensuring that he is in a safe environment. This is repeated until the response of a person towards the factor causing anxiety reduces.

The person is able to confront his own thoughts and feelings without any fear.

Medicines

If a patient has been diagnosed to have a certain mental disorder such as PTSD or generalized anxiety disorder (GAD), he may be prescribed to take anti-anxiety medications such as antidepressants or beta-blockers.

Using these medications together with other psychotherapies can be extremely effective.

Relaxation Therapies

Practicing self-care can boost the overall mental health of a person. It can also help a person to cope with his fears and anxieties. Avoiding caffeine and alcohol, sleeping well, and eating a healthy diet are some of the easiest ways to practice self-care.

When a person suffers from anxiety, specific relaxation techniques can reduce the stress on their minds and reduce the fears. They may include:

  • Performing deep breathing exercises
  • Focusing on certain objects in a room, like counting the tiles on the floor, or meditation

Outlook

While it is completely natural to express concerns about your future and the future of your loved ones, if the death anxiety persists in your behavior or more than 6 months, it indicates that you require medical help.

The fear of death can be overcome by different ways and your mental health professional can guide you through them in a better way.

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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