The struggle to create a new craft of dying

—what is medicine’s role?

By Richard Smith

“Lyn Lofland’s The Craft of Dying (1978) is one of the most important books on post WWII death and dying practices that almost no one has read,” writes John Troyer, director of the Centre for Death and Society at Bath University. He thinks that everybody interested in death and dying should read the book. I agree. Potentially that means that every human being should read the book—because who cannot be interested in death, arguably the most important thing about us. Plus The Craft of Dying is short, easily read, full of compelling stories, and constructs a clear argument.

“Death can neither be “believed” nor “magicked” nor “scienced” away,” writes Lofland in her first line. But we can’t stop ourselves from thinking about it: “Everywhere and always humans think about it and develop beliefs regarding it and produce emotions toward it and do things relative to it. What they think, believe, feel, and do is, of course, variant. But that they think, believe, feel, and do is a universal.”

Every culture has developed beliefs and customs around death, but human death, argues Lofland, has changed dramatically in the past 60 years. Until that time people died mostly of infectious disease and injuries. The period of dying was short, and it was clear when people were dead. Medicine had little to offer. Now people die mostly of chronic disease, and the length of dying is long. Death is not easily defined, and doctors have much to offer, including long term ventilation, heroic operations, and drugs, some of them extremely expensive.

“In the past few decades, medical science has rendered obsolete centuries of experience, tradition, and language about our mortality, and created a new difficulty for mankind: how to die,” writes Atul Gawande in Being Mortal, published in 2014. Lofland wrote something similar in 1978: “There exists currently no widely accepted, fully articulated, well-integrated dogma that gives ‘being dying’ its meaning or its place in the larger scheme of things.”

A cultural vacuum has been created, and inevitably attempts are underway to fill the vacuum. We have entered a new age of what Lofland calls “thanatalogical chic”: in the contemporary cliché “death is the new black.” We have to decide how to die, where to die, how to dispose of the dead, how to mourn, and, most difficult of all, what death means.

One response has been what Lofland teasingly calls “the Happy Death Movement.” It is an inchoate social movement with many practitioners, strands, and different views, but Lofland sees patterns that were emerging in the 70s and are still emerging.

Firstly, a social movement needs an enemy, and the enemy of the Happy Death Movement is death denial, death as the great taboo. Lofland defines the enemy: ”America is a death-denying society…death is a taboo topic…death makes Americans uncomfortable so they run from …death is hidden in America because Americans deny it….” For America, Lofland’s home, we could substitute any high-income country—or even any high-income group within a poor country. “The consequences of all this denial and repression are,” continues Lofland, “asserted to be quite terrible: exorbitant funeral costs and barbaric funeral practices, inhumane handling of dying in hospitals, ostracism of the dying from the living, inauthentic communication with the fatally ill, an unrealistic, mechanical, non-organic view of life, and so forth.”

Lofland is dismissive of the idea of death as taboo: “One might consider it somewhat odd that the statement that death is a taboo topic in America should continue to be asserted in the face of nearly a decade of non-stop talking on the subject.” Talk, writing, and storytelling about death has continued unabated ever since and probably increased. It is probably fair to say, however, that there is much less familiarity with the experience of death: dying people, the signs of death being close, dead bodies, and the disposal of the dead.

A social movement also needs something to shoot for, and for the Happy Death Movement it’s some form of idealised premodern death, with the dying person at home surrounded by loved ones and calmly bidding them goodbye. Lofland is dismissive of this as well, including in her book stories of the dying being buried alive (in Samoa) and ignored while families party (in Tahiti).

As you would expect, the attempts to create new behaviours and beliefs around death reflect broader cultural trends, which Lofland identifies in the United States as “ ‘humanistic-counterculture’ denouncement of modern society in general, which denouncement emphasizes the Western world’s dehumanizing, unemotional, technologically dominated, inauthentic, and constricted character.” That cultural trend is alive and flourishing in most Western societies. “Why not,” asks Lofland, “with Carl Jung, speak of “the achievement of death” and view dying as the final creative task of our lives?” A director of spiritual services (what used to be called a chaplain) I met recently in a hospice told me of the tremendous pressure on people to have a “good death.” This immediately evoked for me the pressure on mothers to have a “good” or “natural” birth.

Emphasising that the Happy Death Movement is still forming, Lofland identifies how the movement will make dying better. Firstly, it’s essential to talk about it. For example, the Order of the Good Death, an organisation founded by a Californian mortician, has eight tenets—and three of them concern talking about death

“2. I believe that the culture of silence around death should be broken through discussion, gatherings, art, innovation, and scholarship.

3. I believe that talking about and engaging with my inevitable death is not morbid, but displays a natural curiosity about the human condition.

7. I believe that my family and friends should know my end-of-life wishes, and that I should have the necessary paperwork to back-up those wishes.”

Secondly, death must be rearranged, moved from hospital to hospices and the home. Death in hospital is failure. Thirdly, we must legislate death with advanced decisions and assisted dying.

Lofland also identifies emerging components of the new craft of dying. Expressivity is essential, but it’s also important to not just embrace death, but to celebrate it. (I’ve done this with my talk, delivered once at the Edinburgh Festival, “Death: the upside.”) Finally—and for me surprisingly—the Happy Death Movement wants us to believe in immortality. Lofland describes how Elisabeth Kübler-Ross, who might be called the doyen of the Happy Death Movement and whose hugely influential book On Death and Dying proposed in 1969 the five stages of grief (denial, anger, bargaining, depression, and acceptance), came to believe in immortality. The pursuit of immortality, long a dream and arguably the unique selling point of Christianity, now attracts serious people and serious money. 

The other two components of the emerging craft of dying are expressivity and positivity. Talk and write about your dying and coming death and celebrate your coming death and the death of those you love. New rituals will be needed, and some like “living funerals” are beginning.

Lofland is a sociologist, an academic, an observer, but you feel that she is not in fully sympathy with the Happy Death Movement. Indeed, she conjures the idea of a Dismal Death Movement to counter the Happy Death Movement: “If expressivity comes to be widely accepted as the only way to achieve a decent death, the emotionally reticent will find themselves under great pressure to ‘share.’ If the idea that death and dying provide new opportunities for self-improvement becomes common currency, the chronic under achiever will find himself facing one more opportunity for failure. Not ‘getting off’ on death may become as déclassé as sexual unresponsiveness. Then perhaps, a ‘dismal death’ movement will rise to wipe the smile from the face of death and restore the ‘Grim Reaper’ to his historic place of honor.”

There is a little about medicine and healthcare in Lofland’s book, and nor does the Order of the Good Death have much to say on the subject. But I wonder how much medicine and healthcare—gigantic, well-funded enterprises—might come to fill the need for new ways to die. Ivan Illich certainly argued that that was the case in his book Limits to Medicine, published at about the same time as Lofland’s book. Death “is now that point at which the human organism refuses any further input of treatment…Health, or the autonomous power to cope, has been expropriated down to the last breath. Technical death has won its victory over dying. Mechanical death has conquered and destroyed all other deaths.” Indeed, it is by taking on death that “health care has become a monolithic world religion.”

All those who read Lofland’s book agree that it could have been published in 2018 not 1978 and be equally relevant. The struggle to create a new craft of dying is far from over, and those of us in medicine and heath care have a particular responsibility to think and act on medicine’s role in the struggle. Almost certainly its role should be smaller.

Complete Article HERE!

‘I’ve been saying goodbye to my family for two years’

Last year the author wrote about parenting with motor neurone disease. Here, he reflects on the end of life, before his death two weeks ago

Joe Hammond with his wife, Gill, and sons Jimmy (left) and Tom in 2018.

By Joe Hammond

In the beginning I was just a dad who fell over a bit and then couldn’t drive the car. Then we had a name for what was happening to me: motor neurone disease. The rest of my physical decline has taken two years and I now write with a camera attached to a computer, which tracks reflections from my pupils. I can use the same device to talk with my synthetic voice. It’s obviously slower to use, and has trained me to get to the point, in much the same way that dying has.

In the room next door, as I write, I can hear Jimmy, my two-year-old son, offering to take passengers on a bus ride to various destinations. It’s half-term and Tom, my seven-year-old, has wandered out into the garden. He’s smiling, looking back at the house, as he points out a squirrel to someone standing inside. There’s adult laughter, too. I can hear Gill, my wife, talking with one of my carers.

I’m in an adjacent downstairs bedroom, suspended in a sling that hangs from the ceiling hoist. It’s positioned over a bedpan, and my floppy neck is wedged upright between a pillow and a piece of foam. I usually stay here for a while because it also has a view of the garden. It’s gusty and leaves are twirling down from an ash tree.

I realise I’ve been saying goodbye to my family for two years. Always imagining this version of myself, without a voice or moving parts. But now I’m here, I can see that we’re all just interested in the same thing: how anxious all these squirrels are as they bury their treasure in the turf. How they keep looking back over their shoulders. And how life just carries on, until it doesn’t.

There was a moment halfway through my decline when Tom needed to check whether he would die one day. He was wrapped in a blanket on my lap as I confirmed its inevitability. He sobbed and I pulled the sides of the blanket in around him. After a few moments his tears came to an end, and five minutes later he was upside down on the sofa giggling at his toes.

Children walk past spiders’ webs all the time and see little things dying. Death is all around them; they know this better than their parents, who have often forgotten. I know I had. But children haven’t reached this stage yet. Death and dying can be known. It doesn’t stop them laughing at a fart or making an empty crisp packet go pop.

Jimmy was at my bedside a few mornings ago dispensing imaginary ice-cream. I was staring upwards, and I could hear him low down to my right. I opened and closed my mouth to show that I was eating some of the “[va]nilla” on offer but, silent and motionless, I don’t know if he noticed, and then I heard him padding away into the next room.

I can’t be active in the life of my children. I have to see what the day brings. There was the moment last week when Tom rested his cheek into my upper arm, gently twisted the top of his head upwards against my flesh like a nestling cat, then twirled away. It was a moment that must have lasted five seconds at most but I kept it with me – held on to it – for days, as if I wasn’t just making contact, but taking an imprint.

I owe these moments to materials that are both plastic and hollow. To an expanding network of tubing crisscrossing my body: transparent blues and yellows, concertinaed or smooth. The largest gauge of tubing has the central importance of the eastbound M4 heading into London. This is the one swooshing air and oxygen into my lungs, but there are other tiny subcutaneous tubes more like narrow Cornish lanes, trickling a minuscule palliative cocktail just under the skin of my bicep. The other key thoroughfare is the one delivering sticky beige nutrition through a macaroni-sized tube running directly into my abdomen.

Tubes are now a way of life and, with so many doctors and nurses coming and going, there’s plenty of spare tubing lying around. This place is like a fisherman’s cottage but with coils of plastic everywhere – in wicker baskets or hanging from hooks. A lot of it ends up in the bath with my two boys. Or it becomes part of Jimmy’s marching trumpet band.

When I was diagnosed, my heart broke in different ways, but some of those feelings have softened. It was always the tiny pieces of future that hurt. I’d imagine Gill and Tom and Jimmy unloading shopping, or just being listless together on a Sunday.

But I’m very still with this disease now: I’m an observer, sensing lives happening in other rooms. I hear bottles and cans rattling in plastic bags. I see the rain at three o’clock on a Sunday. All this detail goes by or around me and I see it working. I see three people moving and turning together – and it’s no longer breaking my heart. It’s just sad and comforting. I didn’t expect the end of my life to feel like the future.

Hammond and his family at home last month.

I see and hear my family clowning around and I want so much to be in there with them – teaching my children to brush their teeth in the style of a camel. Instead I’m unnaturally still – observing the way their bodies move to express or receive humour. The way a back curves, or a head is thrown back. Watching hands thrust out wide, or even the opposite of such movements. All the infinite expressions. But I’m not clowning around any more; I just see it going on – how ornate it is, how beautiful.

Other losses are simpler and more incremental. Sometimes they are nothing more than adaptation and sometimes, like the loss of my voice, they are devastating. I lost my swallow very quickly. There was a three-week period when Gill made sure I had lots of really nice soups, and that was it. Food was a thing of the past. I’ve never got over that loss.

I’m fortunate that my ventilator filters out the aroma of most foods, replacing them with a smell like the inside of a plastic bucket. Occasionally smells get through, like roast lamb or the mist that comes from Tom peeling an orange, but mostly I’m assailed by food memories. The most recent is of the yellow Styrofoam containing takeaway from a Lebanese restaurant. Other food memories are more permanent and catastrophic, and these are all the foods I ever made or shared with my young family.

When the boys are in bed, Gill climbs up on to my hospital bed and sometimes falls asleep. It can feel like I’ve been waiting the whole day for this moment. Watching Gill asleep always feels like such peace to me, and some of this article would have been written with Gill by my side in that way.

It’s really hard to cry when you rely on a mask for air. I use a mask that’s attached to my nose, so when I cry my mouth stretches wide open and all the valuable air gusts out, like a badly insulated letter box. And the camera I use to communicate can’t track the progress of my pupils, so crying is a form of incapacitation. It’s so much easier for Gill, who can stretch out on the bed and sob without any of these secondary difficulties. It’s not that we’re always crying together. It just happens sometimes. Recently Gill’s been reading to me from old travel diaries, written in the days before we had children. Stories of mountains and recklessness on motorbikes, other countries. The past feels so luxurious.

But now it’s the present. It’s all been leading up to this. Sad but no longer broken. Here with Gill. It’s a magical kind of sadness, saying goodbye. A bit like preparing to travel again, but no longer together.

Complete Article HERE!

Thoughts for the living from one of the dying

Metaphorical lightning strikes everyone, but this bolt struck me. I’m not quite the hero about it, and don’t ask me to be.

By Eddie Ryshavy

Pancreatic cancer comes out of nowhere and changes your life in one sentence from your doc. In my case, he called me at home and said, “The CT scan showed a three-millimeter mass on your pancreas.”

Stunned, I felt like the judge had just pronounced a death sentence and my earthly status was unalterably changed.

With such news, you realize quickly that you are now different from everyone around you. You have no future. Your worldview changes dramatically.

Humans are the only creatures who can recognize and appreciate the end-of-life process. I’m not 100% sure at this point that it is such a great capability.

I know I can’t speak for everyone. But after talking to some others occupying a seat in the same boat, I thought some comments for the living from the afflicted might be useful:

I find that I crave normalcy. Even though you are sorry, you are not nearly as sorry as the person dying. Make it quick and get on with behaving normally.

Hardest thing — telling people, especially those who want to explore every cancer cell with you. In the past I enjoyed discussing all my age-related maladies as much as anyone. But once they put on the terminal tag it tends to dampen the fun a bit.

Please, please don’t tell me about this friend of a distant cousin who had exactly what I do and died of a lightning strike on the last mile of a marathon at 103.

If you are one of those folks generally known as a crêpe hanger, who gets their jollies by contacting everyone with even a vague acquaintance with the impending decedent, please limit your background information search to nonfamily members.

If you are a close relative or spouse, you should be aware that the soon-to-be departed will have some days when he or she is having a hard time playing the hero.

Oh, I know how to do it. I’ve watched most of John Wayne’s movies. But he died often and had directors coaching him. I’m just on my own and only have this one shot at it.

I can tell you playing the part occasionally gets tiresome.

I know you feel bad for me. I feel bad for me, too. But know I didn’t do this just to ruin your day. Don’t make me spend the next 20 minutes helping you feel good because I understand you don’t feel good about my situation.

Some feel compelled to make sure they have done everything they can to ease the journey into eternity. They sit down, hold both my hands, lock eyes, assume the countenance of a longtime hemorrhoid sufferer and grill me about their version of redemption. They then use their close association with the Almighty to broker a good plea bargain on my behalf.

I know they mean well. But so do I when I say: Please don’t.

We just finished “the meeting” with our kids. My wife is plagued by a penchant to organize anything and everything around her. She had prepared a working outline that dealt with everything from our current and projected financial situation to plans for her living situation after my approaching exit. Thankfully, the kids picked up on my need for normal human contact, and while the initial information we needed to impart evoked some tears as it highlighted the finality of my situation, we got through it fairly quickly and returned to what I considered an enjoyable lunch.

We are paid-up members of the Cremation Society, and my wife has pledged to place me in a cupboard drawer along with the envelope containing the remains of our beloved pooch, Cinder, until the day all three of us will share my eternal parking spot.

Having been a sympathy-giver in the past doesn’t make receiving it any easier. It’s hard not to be envious that everybody you know has a future and you don’t. It makes you feel isolated, and frankly irritated. It has always been difficult for me to receive favors from others. I suppose it’s the downside of being in control.

The impending loss of control and accompanying dependence on others is another difficult part of this pilgrimage. If I should not properly show my appreciation, please know that I do appreciate your kindness — and you — very much.

And then of course there is the matter of the wig. One feature of my final journey I have vowed to resist is the humiliation of complete baldness. I know it’s in style and that many guys look good that way. I also know I wouldn’t be one of them.

We purchased a wig the other day which, after the initial shock, takes about 50 years off my appearance. My coiffeur assured me that after the hair stylist she recommends finishes trimming down the wig, it will be more age-appropriate. Even so, everyone I know will be well-aware I have on a wig.

Who knows — maybe I’ll set a trend, or at least provide a few laughs.

Once your downward spiral toward eternity has been medically confirmed, you realize that this trip must be taken alone. Hard as it is to leave the kids, all parents are aware, and generally accept, that we will eventually precede them. I can find no fitting expression to describe the anguish at the thought of leaving my life partner, a bond in my case that has officially endured 62 years but unofficially since high school.

Heart-wrenching doesn’t come close, but it’s the best I can do.

All I can ask in the interim is that you please join me in making my interaction with you as enjoyable as possible.

Complete Article HERE!

How Friendship Changes at the End of Life

“People become frightened at the end of life. Sometimes I see them moving away from friends as they get sicker.”

By

Julie Beck talks with two women who met through the nontheistic religion of Ethical Culture and have spent a significant amount of time ministering to aging and dying members of their congregation. They discuss how friendship changes at the end of life, and how they work to foster connection and community for members of all ages.

The Friends:

Anne Klaeysen, 68, a recently retired clergy leader for the New York Society for Ethical Culture and a humanist chaplain at New York University. She lives in Brooklyn.
Liz Singer, 71, a geriatric-care manager and the president of the New York Society for Ethical Culture. She lives in Fort Lee, New Jersey.

This interview has been edited and condensed for clarity.


Julie Beck: How did you two meet and begin ministering to the dying together?

Anne Klaeysen: Liz became a member of the New York society maybe seven years ago. I am always at the monthly newcomer reception, so we met there. She just dove right in, and shortly became the president of the board. I have to confess, Liz, I get a little worried when people dive in so quickly. I’m thinking, Oh dear, is she going to drown? Liz did not drown; she’s a strong swimmer. Liz came at a time when we really needed strong leadership. And she wasn’t afraid to take on a couple of the old boys. So I think there was certainly a feminist bond there. [We became] partners in crime, or [rather] partners in good works.strong>Liz Singer: We have a strong aging population. I think 30 percent of our members are probably over 70. And we started to see things like dementia. As Anne and I developed our friendship, we began having conversations on the very delicate process of aging and navigating our roles with the members.

Anne: Liz is a geriatric-care manager. Her expertise in this field was invaluable, but I was a little concerned because I didn’t want to take advantage of her. Members don’t mean to take advantage, but sometimes they do.

Also, our members are humanists. We’re a nontheistic religion of ethics. So most of our members don’t believe in a supernatural deity, nor in an afterlife. And they’re fiercely independent. One of our challenges has been to get them to tell us when they’re going through something. Very often we find out about things after they’re in the hospital. It’s not that they don’t trust us; they have a real fear of losing their dignity.

Another society member, Barbara Simpson, runs something called the Death Café. That’s an opportunity for folks to come and really speak about living. We know that we are mortal, and the gift of that is we can live life more completely and in connection with each other. It’s really a joyful experience for [our members]. Barbara has said that very often people are comfortable talking about [mortality], but their children aren’t. [They’ll say], “No, Mom, you’re never going to die; you’re not going to die yet.” People may have their life in order, their papers in order, but their children are in denial.

Anne Klaeysen (left) and Liz Singer (right) sharing a meal together.

Beck: Was there a turning point where you went from having a collegial relationship to more of a friendship?

Liz: The turning point was probably our first serious case, five or six years ago. There was a woman who was estranged from her daughter. Very stubborn. We were trying to bring the daughter back into the picture and make that relationship communicative. Because it was so difficult, Anne and I had to talk about it all the time. The trick was for Anne and I to work together very closely. Anne was having lunch with [the older woman], and gaining her trust. And I was trying to bring in oversight without activating her stubbornness.

Anne: [The woman] left the society for a while because she didn’t get along with people. People didn’t quite come up to her standards. When she came back I was thinking, How can we help her to fit in? How can we help her not be so judgmental? One really good connection was with the children [in our congregation]. I suggested that she come meet with the children, and tell them about her experience. She was a Holocaust survivor; she was on the kindertransport train from Germany to England. I wanted her to be connected with the children, because she was estranged from her own daughter. And she was kind of prickly around some of the adults. The children were so appreciative, and so affectionate with her. They wrote to her when she wasn’t well. They drew her pictures. That’s another thing that a community can do when it’s intergenerational: connect at all ages of one’s life.

Beck: Being with people at the end of life is very intense work. You are regularly seeing a part of life that a lot of people don’t see, or see very rarely. How do you feel that affects your relationships generally and your friendship specifically?

Anne: Generally I have a great appreciation for what the elderly are going through. A big challenge with one of our members was the lack of understanding among hospice and health-care staff for people who are humanists, who don’t believe in God, and don’t believe in an afterlife. It was really difficult for this person when others around her were saying, “Oh, don’t be afraid. God loves you.”

I’ve been on different panels to try to train people not to assume that they are caring for God-fearing people. Just listen to these people. Even when they have dementia. They may not know where they are, they may not remember things, but you’ve got to listen.

Liz: How does it affect my personal life? Number one, it [gives me] an appreciation for life. Number two, I have a reputation when I go to dinner parties. Don’t bring up any questions about aging or I’ll get on a soapbox.

Beck: You mentioned that sometimes you are ministering to people who are your friends, which I imagine is very special, but at the same time could make the balance harder.

Anne: It does. Keeping our work separate from [our personal lives] is a challenge. Where do you draw the line for someone who’s a friend and someone that you’re pastoring to in a professional capacity? But there’s a part of me that wants my life to be integrated. You don’t want to compartmentalize, but you also don’t want to become so involved that you lose perspective. One thing Liz and I do in our friendship is try to help each other keep that balance.

Beck: Is there anything that you’ve observed about how friendship changes at the end of life?

Liz: People become frightened at the end of life. Sometimes I see them moving away from friends as they get sicker. Once people get past that fear of what’s going on, they can be friends again.

Anne: Partly, [what changes is] a sense of loss. My dad died at 101. He was hale and hearty up until the end, and very sound of mind. I remember him saying that all of his friends had died on him. But because he was hard of hearing, it was difficult for him to make new friends. I think a lot of the infirmities that are experienced in advanced age make it difficult to make new friends. Often at the New York society, I see people who become a member after a spouse has died. They’re grateful to have a group of people with whom they can socialize.

I don’t want to sound stereotypical here, but women have been raised to develop those social skills. Men have very often relied on women to do that for them. What we find is that, in the aging population, women are able to cope better. Men who have relied on a spouse or a girlfriend lack those skills. They prefer to have a woman in their lives who can do that for them. That’s the way they were raised. It’s really difficult for them.

Beck: Because of this work, are there things you’re able to talk about with each other that are harder to talk about with your other friends?

Liz: [Anne and I have] skills around dealing with very deep conversations, where a lot of people don’t want to go.

Anne: Of course we’ve also had a lot of challenges in this political atmosphere of, How do you hear somebody with whom you profoundly disagree? We’ve seen that with members who may not be on speaking terms with family or friends. A lot of the work that we do is about—no matter what age somebody is—having respect for human worth, and seeing the other person as a full person.

Liz, you and I had a little rocky time when we weren’t really understanding each other.

Liz: It had to do with some organizational issues at the society. It was very political.

Anne: I thought, I’m going to assume that this is a misunderstanding. We just really need to go back and listen more carefully. What I really appreciated about Liz was that she not only listened to me but she also checked in with other Ethical Culture clergy. I really appreciated not only the deep listening, but also her checking to see, What’s the bigger story here? I think that comes back to being a religion of ethics. Friendships take work. And a lot of people aren’t willing to do that.

Complete Article HERE!

On the art of dying

By Gary Moore

I’m reading this excellent book by the author Katy Butler entitled “The Art Of Dying Well.”

Put down those phones, no emergency call needed! I’m not going anywhere for awhile. I just want to be prepared.

George Harrison, one of my musical idols also spoke a lot about preparing for death, so when you finally die, you can do so peacefully and transition seamlessly into the next stage of your life. In fact, he wrote a song entitled “The Art of Dying,” which appeared on his first solo album “All Things Must Pass.” In that song, he wrote:

“There’ll come a time when all your hopes are fading

When things that seemed so very plain become an awful pain

Searching for the truth among the lying

And answered when you’ve learned the art of dying”

George’s wife, Olivia, said that when he passed, you didn’t need a candle to light the room. By that, I assume she meant his lighted spirit left his body. Selfishly, I wish George hadn’t left so soon, and I doubt I will encounter him if he returns (because he may not, having died peacefully). But, one never knows.

George’s wife, Olivia, said that when he passed, you didn’t need a candle to light the room. By that, I assume she meant his lighted spirit left his body. Selfishly, I wish George hadn’t left so soon, and I doubt I will encounter him if he returns (because he may not, having died peacefully). But, one never knows.

In the book, Ms. Butler outlines chapter by chapter what elders can do as they reach the end of their life cycle and how to prepare for each stage. She thoughtfully begins each chapter by stating “If you are experiencing…” and lists several conditions, going from mildly annoying to life-threatening, that people our age will experience as they reach the end. It’s done matter of factly, clinically, but with great warmth and compassion, because she then expounds in each chapter on what you should be doing at each particular stage.

One of her suggestions that I found very helpful was transitioning from a general practitioner to a doctor that specializes in elder medicine. In this kind of practice, the doctor asks “What is it that you want to do?” rather then tells you how she or he is going to save you from dying.

Let’s face it: death is a phase we all must go through. There may be a way to delay it, preventative practices you can use to slow it down, but, in the end, it’s the end.

A reader recently responded to one of my articles that discussed death with a quote from the film director and gay rights activist Derek Jarman, who is quoted to have said “I am not afraid of death, but, I am afraid of dying.”

This is because, we know death is coming, but we don’t know how or when it will come. We are unsure of the process by which we transition from life to death and what waits on “the other side.” We have books on faith and religion and spirituality to suggest, in some way, what we might expect, but we don’t know for sure and that uncertainty breeds fear.

On the other hand, another of my heroes, Mark Twain, is quoted as saying “The fear of death follows from the fear of life. A man who lives fully is prepared to die at anytime.”

A story told about St. Francis of Assisi has a man asking everybody in town what they would do if they knew they were going to die tomorrow. Various people offer various versions of tying up loose ends. When the man reaches Francis, Francis is hoeing the garden of the monastery. The man asks Francis what he would do. Francis looks up and around, smiles and replies “I would keep hoeing.”

I doubt that I possess Francis’ courage, strength of faith or ease with mortality. In fact, I might add, this column seems to verify that. Dylan Thomas urges us to “rage / rage / against the dying of the light.”

Katy Butler urges us to accept it and prepare for it as best we can.

I find myself somewhere in the middle. As my younger friend expressed it “I have so much more I have to do.” I think many people in my generation feel that way. Places to go. People to visit. Grandchildren to watch grow. Alas and alack.

But, in conclusion, this quote from Lord Beaverbrook, who was a newspaper tycoon and member of Churchill’s cabinet, struck me:

“This is my final word. It is time for me to become an apprentice once more. I have not settled in which direction. But, somewhere, sometime, soon.”

The idea of becoming an apprentice, of starting over, of beginning a new, different phase of “life” appeals to me. And, maybe, that’s exactly what happens.

Or, to quote Oscar Wilde’s dying words: “Either that wallpaper goes, or I do.”

He did.

Hold those grey heads up!

Complete Article HERE!

The Meaning of Life is That It Ends

How Horror Movies Prepare Us to Talk About Death

by

“Most things will be okay eventually, but not everything will be. Sometimes you’ll put up a good fight and lose. Sometimes you’ll hold on really hard and realize there is no choice but to let go. Acceptance is a small, quiet room.”
–Cheryl Strayed

“That it will never come again makes life so sweet.”Emily Dickinson

There are a lot of uncertainties in life, but the only constant and known fact is that we all die. Despite this collective, inevitable experience that will eventually happen to everyone on the  planet, we tend to avoid this fact altogether. It’s a painful topic, death. A fickle, unfair shadow that situates itself deep in the recesses of our minds; and when brought to the forefront, it usually initiates debilitating emotions and forces actions that the majority of us are not prepared to deal with. Our affairs are not in order; our options for burials are limited and at the mercy of a funeral director; and we are forced to make finite decisions while experiencing agonizing grief. Despite our culture’s adoration for Halloween and horror films, death is still a subject that many prefer to view as an abstract concept. It’s cathartic and safe to embrace the grim reaper within a holiday or cinematic context, but when it comes to our own mortality we recoil at the thought.

Over the past few years, thoughts about burial practices, death preparation, and the acceptance of the horror genre have been progressively evolving. 2018 was the first time that more Americans decided to choose cremation over more expensive burials. Alternative death options are becoming more widely accepted and advanced to not only alleviate the pain for loved ones, but to help reduce damage to the planet while nourishing the growth of new life through one’s passing. Additionally, the horror genre is thriving. Jordan Peele’s Get Out won an Oscar for best original screenplay in 2018; there are continuous remakes of classic genre films like IT and Pet Sematary; and numerous children’s films that lean into the spooky fascination with death such as Goosebumps and most recently Scary Stories to Tell in the Dark are all becoming more mainstream.

In his book Scary Stories to Tell in the Dark, author Alvin Schwartz wrote “don’t you ever laugh as the hearse goes by, for you may be the next to die”, a line that is part of “The Hearse Song”. His trilogy of terror aimed at children was filled with creepy folklore tales and grim illustrations courtesy of artist Stephen Gammell. Straight-forward and blunt, Schwartz was revolutionary in his approach to conveying curiosities revolving around death for those at a young age. Through lore that spanned cultures across the world, he was able to shine light on a dark subject that many parents censor their children from entirely. However, this type of censorship ultimately does not help children. Just like Disney fairytales of a happy ending where the good guy always wins and true love is everlasting, it isn’t reality.

And yet, our society as a whole refuses to address the inevitable truths of life, death, heartbreak, and loss which inadequately and falsely prepare us for the day that we meet these experiences. In the film adaptation of Schwartz’s classic books, there’s a familiar storyline that accompanies haunted locations—the misinterpretation of the past and inflamed legacy of an individual who has passed away. Scary Stories features a character by the name of Sarah Bellows depicted as a sinister spirit who wreaks havoc on a group of friends once her book of self-written stories is stolen. In the end, young protagonist Stella addresses Sarah’s ghost and tells her that she will write her story the way it really was and let everyone know what really happened to her. This is a prime example of reclaiming one’s death (and life) in a manner they choose – a concept that is becoming more commonplace in the funeral industry and is a staple within the Death Positive Movement.

The average American funeral costs $8,000-$10,000, not including the burial and cemetery price tags. Many of the decisions around funeral preparation are made after a loved one dies. As a result, individuals are more easily taken advantage of and choose the most expensive and standard options not knowing for sure what their loved ones preferred to do with their remains, or if there are even alternatives. HBO’s new insightful and tender documentary Alternate Endings: Six New Ways To Die In America aims to introduce viewers to options that may be a better financial, emotional, and environmental fit for their death and the death of their loved ones. The documentary opens with scenes from the National Funeral Directors Association’s (NFDA) annual convention where hundreds gather to display and learn about the latest advancements or trends in the funeral industry. Companies offer the service of decorating personalized caskets, hologram eulogies, and even submerging one’s ashes in the dirt of their native homeland.

The six alternate endings mentioned in the documentary include: a memorial reef burial, living wake, green burial, space burial, “medical aid in dying” (MAID), and a celebration of life. The memorial reef, green, and space burials are all alternate options within the realm of a standard cremation or grave burial. Memorial Reef International builds artificial coral reefs to enhance coral generation, increase marine biomass, and provide eco-friendly alternatives that sustain life for hundreds of years. Another eco-friendly option is the green burial which skips the casket entirely as the body is wrapped in a shroud and placed directly into the earth. This method also bypasses the expensive cost of cement vaults in a standard cemetery which are just meant to keep the grounds even and easier for the landscapers to mow the grass.

As the effects of climate change grow increasingly dire, more and more people seek ways to give their bodies back to the earth to sustain new growth. Water cremation or aquamation is a form of green cremation which does not emit toxic chemicals nor does it contribute to greenhouse gases. Its carbon footprint is one-tenth of what fire-based cremations produce. In an article by National Geographic, it states “American funerals are responsible each year for the felling of 30 million board feet of casket wood (some of which comes from tropical hardwoods), 90,000 tons of steel, 1.6 million tons of concrete for burial vaults, and 800,000 gallons of embalming fluid. Even cremation is an environmental horror story, with the incineration process emitting many a noxious substance, including dioxin, hydrochloric acid, sulfur dioxide, and climate-changing carbon dioxide.” 

The traditional ritualistic aspect of funerals is also evolving. A terminally ill couple in Alternate Endings chooses to have a living wake, a celebration where loved ones and friends are able to say goodbye in person. By embracing their mortality, they’re allowing those close to them to say their final words and experience the appreciation of their life that they may not have realized had they kept their death at a distance. It’s a way to say how much you love someone to their face before you no longer have the chance. Living wakes are performed while the person is still alive and celebrations of life occur after someone has passed. After losing their five-year-old son, two parents in the documentary decide to fulfill their child’s wishes by throwing a party in his honor complete with five bounce houses, painting stations, and an appearance from Batman himself. Even at five, their son realized how sad funerals can be and facing his own death, he specifically requested he not have one. 

Now, if someone as young as five years old can embrace their mortality and make a decision about his passing, then why is it so hard for adults? There’s a stigma around death and it is easier to just ignore it as long as possible, but in the end, doing so can be detrimental. In fact, thinking about death can be a positive and productive practice. Mortician Caitlin Doughty understands this and set out to change the way we view death by creating the Death Positive Movement through her work with The Order of the Good Death. “The Order is about making death a part of your life. Staring down your death fears—whether it be your own death, the death of those you love, the pain of dying, the afterlife (or lack thereof), grief, corpses, bodily decomposition, or all of the above. Accepting that death itself is natural, but the death anxiety of modern culture is not.” This is achieved through various resources and advocacy. The name may sound like a cult, but I assure you it’s not.

In her book, Smoke Gets in Your Eyes, she describes her idea of a “good death” as being prepared to die, with affairs in order, the good and bad messages delivered, dying while the mind is sharp, and dying without large amounts of suffering and pain. It means accepting death as inevitable as opposed to fighting it when the time comes. Therefore, she has collaborated with an array of funeral industry professionals, academics, and artists to provide the best resources possible including information on end of life planning, green burial technology, as well as methods on how to alter our innate fear of death that has only been enhanced through recent (and unfortunately perpetual) devastating events in the news. 

While the horror genre provides viewers the chance to vicariously experience our fear of death in a safe, dissociative capacity, there are now more resources and options than ever before to help us face the inevitable. Instead of solely harnessing terror and sadness, there are ways to find beauty and inspiration in death. As Kafka said, “The meaning of life is that it ends.” Welcoming our mortality allows us to cherish people more because we don’t know how much time we’ll have with them. It is the driving force behind learning, loving, creating, and achieving what we want out of life. While death can be its own scary story, at least there’s comfort in knowing that it is something we will all face one day and there is some control you can have over the process as well as one’s legacy. And when that fateful day comes, let it be the good death you’d want for yourself and those you love, with plenty of peace and the least amount of pain and regret as possible.

Complete Article HERE!

Who Will Wear My Dead Husband’s Clothes?

It took me a long time to find a new home for the belongings he left behind.

By

My husband and I shared a narrow, shoebox-shaped closet in our home here, his clothes facing mine from double-hanging wardrobes mounted on the walls. After he died of pancreatic cancer on Nov. 1, 2017, a month after his diagnosis, I’d often wander into the closet to search for his smell on his shirts. My mother caught me one day sniffing his shirts and crying, and said, “You can’t keep doing this forever.”

“What should I do?” I asked.

“You need to find the right people to give his clothes to,” she replied.

I packed his shirts, slacks, shoes, belts and ties into the gunpowder-gray suitcases we’d bought for our trip through western Ireland years earlier. That same day, a Federal District Court judge in San Francisco ordered the Trump administration to keep on renewing the permits that gave young undocumented immigrants permission to temporarily live and work in the United States, as prescribed by the Obama-era program known as Deferred Action for Childhood Arrivals, or DACA.

I noted the events in my journal in short, unemotional sentences: “Cleaned closet, packed Mike’s stuff away;” “Good news of the day: DACA still alive.”

I parked the suitcases in a corner of my garage, where they stayed for 16 months, gathering dust as the president made a mess out of the country’s already messy immigration system.

In these months, my daughter’s nanny, a naturalized citizen, lost her brother in Mexico, where he had been deported last year after living illegally for 26 years in Phoenix. (His wife and three children still live here.) The nanny said that he’d died of a broken heart.

Also in these months, accounts of Central Americans released from immigration detention and dumped at the Greyhound bus station in town began showing up in my news feeds, followed by reports about Central Americans lost in the punishing desert that straddles the Arizona-Mexico border, or about children falling ill and dying in overcrowded Border Patrol stations.

I had written articles of my own about the conditions inside these stations during my stint as Phoenix bureau chief for The Times. I’d also written a report in 2014 from inside a makeshift shelter that the Border Patrol had set up for migrant children in the border city of Nogales, Ariz. Then, as now, despair had led thousands of people to leave their home countries in search of what so many of us in America take for granted: the right to live without fear of being kidnapped, tortured, killed.

What I saw at that shelter stayed with me. The children sleeping shoulder-to-shoulder on the floor, in dirty clothes, under blankets that looked like sheets of aluminum foil. These memories, and the new crop of migrant stories on my news feeds, only added to the grief of losing my husband at the relatively young age of 44 — and to the anguish of raising our daughter alone and far away from my family, in a country that is legally my own but that has made it tough for me at times to feel that this is the country where I belong.

My husband was a proud American, the son of a nurse and a gas-meter reader born and bred in a blue-collar mill town in Central Massachusetts, where, like him, almost everyone was white. He was curious enough about the world to marry me, an immigrant from Brazil. When our daughter was born, he spoke proudly about the jumble of heritages coursing through her veins — Scots-Irish and French Canadian from his side, and indigenous, Portuguese and African from mine. I sometimes called her “a mutt.” He called her “the perfect American.”

He was an optimist and in the days right after Mr. Trump’s election, he kept his glass-half-full attitude, telling me that the unorthodox president-elect might be just what was needed to get things going in Washington. But that didn’t last long. I remember the glum expression on his face as he checked the new president’s Twitter feed while silently sipping his coffee. I urged him to find another morning routine, to check out of social media for a while.

He told me, “I wished Trump knew the immigrants we know, all these good, honest people.”

One morning this spring, I logged onto his email for only the second time since his death. I typed my name in the search field, watched the results populate the screen and scrolled through the messages, contemplating the simplicity of our life, the tenderness of his words, the intimacy we shared, all of it contained in subject lines: “cool summer camp ideas,” “add to nanny to-do list,” “miss you while you’re away.”

One such line caught my eye — “The toll it’s taken,” it read. The message, dated Nov. 16, 2016, was in the drafts folder. I clicked it open.

I haven’t been sleeping well since last Tuesday. I’m really upset about the election. Was in denial there for a few days and tried to put a good face on it. But I just need to express how angry, frightened and disgusted I am. You know me — I don’t like to emote — but I am really crushed by this. So deeply disappointed in my country and in many people that I know.
I’m sorry. I love you.

Just that week, I had received a text message from a friend, asking if I might be willing to volunteer as a Spanish-English interpreter when the next group of Central American migrants seeking asylum arrived at her church. The church is one of dozens to have banded together to offer a safety net of sorts for these migrants, giving them basic health checks, some toiletries and clothes, and making travel arrangements so that they can reunite with relatives already settled in the United States. I was on the fence about it, in part because I was afraid to face the migrants’ sadness.

I found the courage I needed in my husband’s unsent message to me.

By then, the migrants at the church had come and gone. But I knew that another group would be around soon.

The next day, I got a text from my friend: “It looks like 11 a.m. Please don’t tell anyone.”

I put the suitcases in my car and waited for instructions.

“When you get here, ask for me directly,” she wrote.

I drove south and west from my house. On the way, I listened to Bruce Springsteen’s “The River,” the album that my husband played for me on our first date. I cried. I talked to him.

I got off in a part of the city full of warehouses and big, empty lots. I walked into the church. Just as my mother suggested, I had found the right people to give his clothes to.

Complete Article HERE!