Tag: Death Meditation

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The Enduring Genius of ‘The Craft of Dying’

— More than 40 years ago, Lyn Lofland, who died last month, published a book that changed how I think about death and dying.

By: John Troyer

Lyn Lofland’s 1978 book “The Craft of Dying: The Modern Face of Death” completely changed how I think about death and dying. As I write in the introduction to a special 40th-anniversary edition of the book published a few years ago and featured below, “The Craft of Dying” is truly a message in a bottle, one sent from a decade when death and dying social movements coalesced around end-of-life ideologies that the Western world still struggles with today. Sadly, Lyn died this past September after a long and impactful career. I encourage you to read her obituary, written by one of her final graduate students, Ara Francis, who also contributed an epilogue to the book.

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. To see Lofland’s largely overlooked, but still relevant, text republished by the MIT Press is both thrilling and deeply gratifying. It is the one book that in my capacity as Director of the Centre for Death and Society at the University of Bath I think every person working on contemporary death and dying issues must read. Indeed, I strongly recommend that anyone interested in understanding how events 40 years ago shaped what Lofland would call today’s “thanatological chic” read “The Craft of Dying” and note the current uncanny resemblances to the 1970s.

This article is excerpted from the 40th anniversary edition of Lyn Lofland’s book “The Craft of Dying“

“The Craft of Dying” is, for me, that death, dying, and end-of-life issues book.

A common response to my adamant recommendation is — why? Why and how is this specific book any different or better than its contemporaries, e.g., “On Death and Dying” by Elisabeth Kübler-Ross or “The Denial of Death” by Ernest Becker (to name two big death canon contenders)? My rapid answer is that Lofland’s book both documents what happened in the 1970s (the formation of new hospice spaces, activist groups encouraging people to accept death, the introduction of college courses on dying, and so on) alongside an invaluable critique of those activities. In fact, it is Lofland’s critique and classification of death-focused groups as social movements creatively constructing a new end-of-life ideology that makes “The Craft of Dying” fundamentally important. Lofland calls these end-of-life groups (similar in structure, she will note, to diffuse 1970s women’s movement and environmental movement groups) the happy death movement and uses the term to connote enthusiastic warriors taking on a challenge. Her critique is both generous and insightful at all times. But Lofland was not content with merely documenting what these death and dying groups did; she wanted to better understand what motivated their new end-of-life politics and thinking. It is her push to clearly articulate what is happening in her own moment that makes her book so valuable today; almost every argument and observation she first presented 40 years ago remains both pertinent and urgently needed now.

Almost every argument and observation Lofland first presented 40 years ago remains both pertinent and urgently needed now.

This book is truly a message in a bottle, and one sent from a decade when death and dying social movements coalesced around end-of-life ideologies that the Western world still struggles with today. That Lyn Lofland accomplished this feat in so few pages is an achievement in and of itself.

Discovering “The Craft of Dying”

For all my praise of Lofland’s work, I am embarrassed to say that I first learned of, and then read, “The Craft of Dying” in summer 2014. My mid-career discovery of Lofland occurred only after my esteemed colleague (and walking Death Studies encyclopedia) Tony Walter asked if I knew her book and the happy death movement argument. I said that no, I didn’t. Tony asked about Lofland, because he understood how “The Craft of Dying” directly related to my (then new) research project on American death and dying discourse during the 1970s.

In a nutshell, this research project examines how the 1970s functioned as a crucial but largely forgotten decade for understanding what motivates today’s death and dying groups, as well as foreshadowing many current end-of-life debates. It is during the 1970s that new death and dying tools and technologies took root, altering the definition of death: things taken for granted today, such as living wills and life-support technologies. Much of the decade’s activity is at a very local level and includes individuals forming groups that emphasize Death Acceptance, the Right-to-Die, and dying a Natural Death — all thoroughly documented in the book.

But the 1970s was also a decade when end-of-life issues extended all the way to the White House and bookended politically tumultuous times. In 1971 President Richard Nixon announced his War on Cancer, and in 1979 President Jimmy Carter formed the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical Behavioral Research, which later published its landmark 1981 report Defining Death: A Report on the Medical, Legal, and Ethical Issues in the Determination of Death during the Reagan administration. Carter’s group would eventually become known as the President’s Council on Bioethics and advise all future Presidents on a wide array of issues, including, but not limited to, death and dying.

Lofland’s research remains a key historical and conceptual anchor for anyone interested in that decade, since “The Craft of Dying” analyzed and critiqued what was happening in the 1970s, during the 1970s. What any reader comes away with from this book, I think, is how death and dying were national conversations related to ongoing events — e.g., the Karen Ann Quinlan right-to-die case in New Jersey (which also went global) — and connected to personal freedoms — e.g., the country’s first Natural Death Act, passed in California in 1976, that gave individuals the right to legally refuse medical treatments even if the refusal meant dying.

After Tony Walter’s helpful nudge, I discovered that “The Craft of Dying” was long out of print (the republishing idea first occurred in this very moment), but I persisted in locating a copy and subsequently devoured the book in one August 2014 sitting. I say in all seriousness that reading this book fundamentally changed how I approached all research on death, dying, the dead body, end-of-life concerns, the politics of death, the historical formation of hospice spaces, current Happy Death groups pushing for what Lofland has called “death talk,” and neoliberal economic “choice” about funerals. I could go on and on. And like any convert with a newly discovered evangelical zeal I wanted nothing more than to excitedly read long sections of “The Craft of Dying” to audiences.

Coincidentally enough, captive audiences were available to me in August 2014, since I was the Scholar in Residence at the Morbid Anatomy Museum in Brooklyn, New York (now sadly closed). I am not kidding when I say that almost all my public lectures during the residency involved me simply reading sections fromLyn’s book, especially the introduction:

It seems likely that eventually humans will construct for themselves a new, or at least altered, death culture and organization—a new “craft of dying”—better able to contain the new experience. I believe, as do other sociological observers … that in the ferment of activity relative to death and dying during the last two decades in the United States we have witnessed and are witnessing just such a reconstruction. Undoubtedly within this ferment, especially that emanating from the mass media, there are elements of fad and fashion—a thanatological “chic” as it were, having approximately the same level of import as organic gardening and home canning among the rich. And certainly one can never underestimate the capacity of American public discourse to transform “life and death matters” into passing enthusiasms. But there is, I believe, more to this activity than simply one more example of impermanent trendiness in modern life. Americans, especially affluent middle-class Americans, have been in the process of creating new or at least altered ways of thinking, believing, feeling, and acting about death and dying because they have been confronting a new “face of death.”

And if you are reading this now and thinking to yourself that these words eerily describe death and dying in your own historical moment (“fad and fashion” always gives me pause), then you begin to see why a book published in 1978 continues challenging everyone to examine how any decade’s happy death movements can possibly be unique, or new, or revolutionary. Lofland wants readers to understand the history of the present, so that the next generation’s death and dying activists might also comprehend the historical relationships to their own current struggle.

Relevance for Today

“The Craft of Dying” also productively intervenes in one of the 1970s’ most unhelpful and unnecessary death and dying arguments, an argument that dogmatically persists today — i.e., that death is a taboo. If the happy death movement functioned like a true social movement, Lyn Lofland reasoned, then that movement needed an enemy, and the death taboo is the perfect foil, since everybody already “knows” that it “exists.”

The fact that we all eventually die becomes that rare universal constant that allows each human the opportunity, should we take it, to experience and think about death and dying in new ways.

Lofland is neither the first author, nor will she be the last, to thoroughly challenge how and why the death taboo argument is used, abused, and greatly exaggerated. The death taboo will always be a productive fiction for various happy death movement groups committed to ideologically transforming the “face of death” in America and the West, but it is a fiction all the same. As she rightly points out in part III, the death taboo argument serves a useful function that is especially popular with death-movement intellectuals (full disclosure: I am a card-carrying member of said group). Her critique of death-movement intellectuals is reason enough to appreciate how farsighted this text remains today. Lofland’s crucial intervention begins:

It has been variously formulated, but essentially the view holds that America is a death-denying society, that death is a taboo topic, that death makes Americans uncomfortable so they run from it, that death is hidden in America because Americans deny it, and so forth. The consequences of all this denial and repression are 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. … As many scholars have pointed out, the empirical evidence for all these assertions is something less than overwhelming (see, for example, Dumont and Foss, 1972; Donaldson, 1972). And 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. But if one appreciates the functions these statements serve in enemy evocation, one can also appreciate that their questionable empirical basis is hardly a serious obstacle to endless repetition. The importance of the “conventional view of death”—of the conventional wisdom about death—as propounded over and over again by movement intellectuals, is not its “truth” but its utility.

If making more people rigorously question whether or not they really need the death taboo fiction to advance their own death and dying arguments is the only thing republishing “The Craft of Dying” accomplishes, then all the waiting was worth it. Seeing the taboo argument finally debunked would also recognize Lofland’s scholarly commitment to status quo challenging scholarship both then and now. That said, I have a strong hunch that in the decades to come many death-movement intellectuals and practitioners will still make the death taboo argument to advance both their careers and book sales — a point not lost on Lofland when she states that the death taboo is always about utility, not truth.

Above and beyond the book’s uncanny timeliness (e.g., when reading the preface, replace all the originally listed years with the current year and note the similarities) Lofland taps into another core human experience: we Homo sapiens persist at dying. The fact that we all eventually die becomes that rare universal constant that allows each human the opportunity, should we take it, to experience and think about death and dying in new ways. Part II, Individual Constructions: Styling and Controlling the Dying Role, in particular, focuses on how the dying person becomes something different during the 1970s.

I found myself directly confronting Lofland’s newly articulated experience of death and dying, as discussed in part II, when my younger sister, Julie Troyer, died from terminal brain cancer on July 29, 2018. Watching my sister die made me reflect quite heavily on the book’s key assertions, and in very unexpected ways that accidentally (albeit sadly) coincided with writing this introduction. The MIT Press expressed interest in republishing “The Craft of Dying” while my sister was dying, but I started writing the introduction after she was dead — an interval of approximately one month. My father, Ron Troyer, a long-time grief and bereavement support-group facilitator and retired American Funeral Director, best summed up my death interval experience in very Loflandian language: it is one thing to publicly say, “Julie is dying,” it’s an entirely different experience to state, “Julie is dead.” The former felt active, the latter inert.

I chose to add this section about my recent experience with death and dying, as Lofland rigorously analyzes the role of language and expressivity in encouraging people to discuss precisely these issues. For many days I wondered aloud if it was appropriate for a death studies academic, such as myself, to write a new introduction for “The Craft of Dying” that includes a discussion of such a personal experience. After staring at this book for what seemed like eons, I fully realized the genius of Lyn Lofland’s irreplaceable contribution to contemporary death and dying discourse: that, no matter what any of us do; no matter our personal, professional, or familial relationship with death, everyone still dies. And that Lofland’s always-new-craft-of-dying requires we living humans to critically reflect on these confrontations with mortality in our own meaningful ways, so that we might glimpse, for a moment, what living and dying can become in our technologically advanced 21st century. It is vitally important, I think Lofland would say, to see our personal mortal ends in the modern face of death.

What, Then, for the Future of “The Craft of Dying”?

I see no reason why this book will not remain relevant for another forty years. In surveying how Lyn Lofland’s central arguments evolved over time, connections clearly emerge with the ACT-UP AIDS protests of the 1980s and 1990s, and the contemporary activism of today’s Black Lives Matter groups. Lofland rightly predicts that death and dying social movements will persist at emerging and folding back into each other, precisely because death refuses to phenomenologically disappear. The complexity of what she wrote has never dissipated and will continue to find new audiences for many years to come. Part I, The Situation of Modern Dying: Problems and Potentials, sums up via the chapter title itself what each generation will assuredly confront.

“The Craft of Dying” does come with a cautionary note, however, and it is a point that bears mentioning in the conclusion to this new introduction.

Happy death movement groups (then and now) always run the risk of alienating the very people they so eagerly want to help through non-stop ultra-upbeat expressive death talking that then demands transforming and accepting death/dying/mortality at all costs. The challenge here involves individuals becoming convinced that they are doing death wrong, and in that moment of doubt, Lofland wryly suggests, a “dismal death” movement might emerge:

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.

This book will remain relevant for all these specific cautionary reasons, and many more. I hope that in another four decades “The Craft of Dying” is republished for that historical moment’s own happy death movements; especially the ones that still evoke the death taboo enemy in order to evangelize a getting-off-on-death gospel. The irony, of course, is that Lyn Lofland showed us all how easy it is to talk about death and dying without ever transgressing any taboos, and she did this forty years ago in the book that you are about to read.

On further reflection it becomes clear that most happy death movements just can’t help themselves when it comes to constantly talking about this taboo that isn’t actually true. Why? It makes them feel useful. Lyn Lofland would likely say that’s okay.

In the face of dying, Death doesn’t really care.

Complete Article ↪HERE↩!

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My Grandfather’s Death Party Was a Final Gift to His Family

The end of life is often invisible, shut away in nursing homes or intensive-care units. There’s another way.

By Sara Harrison

My grandfather liked to stage a scene. He moved to California in 1935 to work in Hollywood, becoming a director for B-list movies and TV shows like “77 Sunset Strip” and “The Mickey Mouse Club.” Despite his work, he didn’t particularly care for film and didn’t own a TV until 1964. Even then he mostly used it to watch Dodgers games. What he liked was the process of making a show: reworking the script, setting the angles, being in charge.

Like so many in his generation, he was a multipack-a-day smoker; a Philip Morris cigarette hangs from his lower lip in nearly every photograph I have of him. He lived with emphysema for decades, maintaining his last sliver of healthy lung tissue through a combination of lap swimming, walking, Scotch and luck. But at 97 years old, he had flagging energy. No longer able to walk from his bedroom to the kitchen without stopping to catch his breath, he rigged up an oxygen tank that allowed him to roam the length of his home. Tubes followed him up and down the corridor.

For a brief moment, at my grandfather’s party, I got to slow down the inevitable, to be with the people I grew up with, in the place we held sacred and dear.

Death is, famously, one of the few certainties in this life. It’s also a reality that doctors, patients and families tend to avoid. In a recent report, The Lancet Commission on the Value of Death notes that today death “is not so much denied but invisible.” At the end of life, people are often alone, shut away in nursing homes or intensive-care units, insulating most of us from the sounds, smells and look of mortality.

Not so for my grandfather. Though he didn’t rush headlong into the hereafter, he didn’t want to wait for his faculties to fail one by one. He wanted to die with a modicum of independence, with hospice care.

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On an unseasonably warm Los Angeles day in May 2011, a cast of characters — his children, grandchildren and friends — assembled at his home, ready to play their part in the last act of his life. I was a college junior at the time, required to read Coleridge’s “Kubla Khan” for class that week. I found it in an English poetry collection of my grandfather’s and read sitting on a sagging couch, intermittently distracted by family members who, one by one, came in and asked what I was doing. They’d smile and recite the opening lines: “In Xanadu did Kubla Khan/A stately pleasure-dome decree:/Where Alph, the sacred river, ran/Through caverns measureless to man/Down to a sunless sea.”

What ensued was a five-day tropical vacation. My grandfather couldn’t stand the air-conditioning, so we wore bathing suits most of the day and paged languidly through withered photo albums. I floated in the sacred waters of my childhood — the swimming pool — and harvested lemons from the prolific backyard tree. When 6 o’clock rolled around, my grandfather would ask, “Who’s pouring me a Scotch?” Cocktails, cheese, olives and stale water crackers appeared. We listened to classical records and told stories and took turns cooking dinner. But just as Coleridge’s vision faded, interrupted by a person from Porlock, our reverie was splintered by closed-door meetings with hospice nurses and conversations with doctors, who could attest my grandfather had a sound mind and a failing body and was eligible for end-of-life care.

However perverse it may sound, that death party — as my sister and I came to call those five days — remains one of the most profound experiences of my life. For a brief moment, at my grandfather’s party, I got to slow down the inevitable, to be with the people I grew up with, in the place we held sacred and dear. Amid that joyful reverie, I had time to sober up and confront the simple reality that my grandfather wanted to die and that everything would change. I saw that the man who had commanded movie sets and TV crews now rarely left his house. That his sweaters hung loose on his stooped shoulders, and that his rosebushes withered with neglect. That things were already changing, whether I was ready for it or not.

People often talk about death as if it’s the worst thing that can happen to someone. As if it’s something that must be avoided at all costs. Better to age, however painfully, however diminished, than to ever admit that we are mortal. But at the end of a long, full life, my grandfather was done. He died with power and agency, love and support. To have that death, he had to acknowledge and embrace his mortality. At our death party, he gave his family a chance to accept that fact, too.

More than a decade later, my parents are discussing their own plans, debating whether to be cremated or buried. My dad calls to talk about what I want. Would I visit their grave sites? Would that be meaningful? There are no monuments for my grandfather, whose body was eventually cremated and scattered at Evergreen Cemetery in Los Angeles. When I miss him most — when I married, or when my nieces were born — I pay homage with a cocktail, a toast and a memory. I think about one evening during the party when, as the room hummed with humans, he held my head in his hands. A few days later, he had his usual Scotch, went to bed and died. In my memory, this moment — the moment when we looked at each other, when we said I love you and when we let each other go — lives on. It comforts me when I pass through caverns of sadness and am marooned in sunless seas of grief. I tell my parents I don’t need them to have a grave site.

Complete Article ↪HERE↩!

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Final moments of life have one thing in common

— Three professionals who work with death and dying have described the one thing they all have in common.

By Bek Day

Woody Allen famously said “I’m not afraid of death, I just don’t want to be there when it happens,” and whatever you think of the scandal-plagued filmmaker’s behaviour in life, it’s a sentiment many can agree with.

“We live in a death-denying culture,” says Dr Merran Cooper, who is also trained as an end-of-life doula and physiotherapist. “By denying the possibility we might die, and having conversations about it, we deny ourselves the opportunity to have the most important conversations of our lives with the most important people.”

But just what are those all-important final moments like for people? Is death really as frightening as we think?

News.com.au spoke to three professionals who work with death and dying and their descriptions all had one major thing in common: it’s usually more peaceful than you might expect.

Camilla Rowland, CEO of Palliative Care Australia

“My experience has been that usually as the different organs start to shut down, people come in and out of a semiconscious state, and it is usually very peaceful,” Camilla explains, adding that the feeling of someone’s ‘spirit’ ‘energy’ filling the room is also common.

“I’ve had that experience, and also many other members of my palliative care team have said that as well, that they felt the spirit of the person around them. And that’s not necessarily a religious thing, it’s just a feeling that occurs. I’ve had people from all walks of life and all different belief systems say the same thing.”

Patsy Bingham, Death Doula

“Peace, calm, relief, hysteria – there could be any one of these feelings depending on who died, how they died and whether they were too young to die,” explains Patsy.

“But for everyone, it is a defined moment in time, and I have a habit of looking at the clock when someone takes their last breath, as family members don’t, and then ask later.”

Dr Merran Cooper, CEO of Touchstone Life Care

“Everyone dies differently but most commonly, when death is expected, a person begins to sleep more, and breath more shallowly until it is very hard to tell whether they are breathing or not,” Dr Cooper explains.

“It can be a peaceful thing to watch. There are noises that worry the person watching, and even bleeding which is distressing to watch, but for the person dying, they slowly move to a place of deeper and deeper unconsciousness until they do not take the next breath.”

Complete Article ↪HERE↩!

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Let’s talk about dying

The most unavoidable topic that everyone avoids

By Hannah Mirsky

No one talks about death. I didn’t for a long time.

Sometimes the words spilled out when I was with a friend, but I never felt satisfied. Other times it was late at night and I would mope out to the living room past midnight to sit with my mother and briefly discuss how much we missed those in our family who died.

That was it though. Death would be brought up, but the conversation never was discussed for too long.

In the summer going into seventh grade my grandmother died from pancreatic cancer, then my aunt ten months later from bladder cancer. Then my grandfather a few years later.

As I coped with the death of my family members, I began excessively planning out my future. I developed the ideal life from the city I’ll reside in, to the color I would paint my apartment walls. When I committed to college I vowed I would take every opportunity I could possibly get and fill each day with experiences that could help me with this vision.

But I worked so much when I got to college. It got to the point last fall that I lost a part of myself. There were no moments of peace in my day. I took a full course load, managed my school’s broadcast news department, worked an internship, another part-time job and choreographed for Quinnipiac University’s Tap Company. In every way, I was disconnected from the people around me and myself.

Yet during this particular semester, I was enrolled in a course called “Sociology of Death/Dying” where we discussed social interaction between the dying person, professional caregivers and loved ones. The class flowed like an open forum.

I joked that I would start and end my week with death since I only had that course on Mondays and Fridays. My friends didn’t laugh too much.

Three times a week I was forced to consider death in ways I hadn’t considered. For the first time, I was forced to confront the topic of death on a daily basis.

More than anything, this course revealed the significance of starting conversations about the dying process before death itself. While the person is dying, family and friends are often so wrapped up in trying to keep them around for a bit longer. However, the person dying may feel an obligation to fight for their family when it isn’t something they want. We begin making decisions not for ourselves anymore and we become alienated from the people that we should lean on the most.

Conversations need to begin with health workers and doctors, it needs to trickle down to the family.

Death is isolating in our world— a stigma that many don’t talk about directly. It wasn’t until I met a very close friend of mine when I was in Washington D.C. that I mentioned that I joked about death a lot. No one had ever told me that I brought it up that often.

Maybe, had I allowed myself to discuss how I felt about death when I was growing up, I wouldn’t weave it into my conversations so much now. However, death changes you. I don’t think I would be as articulate with how I spend my days or have had such a clear path. In a way, it helped me understand my priorities and know I don’t have forever to meet them. If I want something, I no longer wait.

It shouldn’t have taken so long for me to feel comfortable talking about death, but it is something many people still struggle with. Neglecting conversation on the certainty of something each one of us will go through ends up forcing us to not consider what we want in life.

Complete Article ↪HERE↩!

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I have terminal cancer.

A houseplant is helping me confront mortality.

David Meyers has placed his lucky bamboo in a living room window. He has found comfort in caring for the plant since his brain cancer diagnosis.

Watering the bamboo, as small an act as it was, connected me to a core part of my old identity and taught me I could still be a caregiver

by David Meyers

My wife and I usually don’t keep houseplants. Anything in pots gets either overwatered or underwatered. After my diagnosis with glioblastoma — a terminal brain cancer with a prognosis of little more than a year to live — I loved the idea of having something new and green and alive around us.

When my friend Mitch gave me a lucky bamboo plant in a deep-green pottery bowl with three pencil-size stalks braided together, we decided to place the plant in the living room window across from the couch where I spent much of each day.

I smiled when I looked over the rim of the mug of coffee Hannah brought me each morning.

I told Hannah I wanted to care for the plant myself. When it didn’t immediately turn yellow or brown or lose all of its leaves, I was pleasantly surprised.

Tending to the plant gave me a sense of accomplishment at a time when I sometimes felt useless. Glioblastoma limited my ability to walk, and the treatment left me fatigued, making it hard for me to accomplish everyday tasks.

Being dependable again

As a physician, I was used to being the one who provided care, not the one who received it. Since my diagnosis in August 2018, far too often, it seemed, I had to rely on help from other people. The enormous change left me feeling adrift and unsettled. Watering the bamboo, as small an act as it was, connected me to a core part of my old identity and taught me I could still be a caregiver. Plants and people could still depend on me.

Over the next few months, I recovered from surgery and completed radiation and the first round of chemotherapy. Even after I returned to work, I continued to care for the plant. Soon, it had nearly doubled in height and its leaves were shiny and lush. Both the tree and I were thriving.

Then, mysteriously, it began to show signs of stress. I increased my watering, then decreased it. I nestled coffee grounds into the soil. I fed it commercial plant food. No matter what I did, the leaves kept browning and dropping to the floor. I grew more and more frustrated and uneasy.

“I can’t even care for a simple plant!” I yelled. “I’m failing!”

Hannah reminded me that we’d seen houseplants die before. She asked me why I was getting so worked up about this particular one.

“If my lucky bamboo dies,” I blurted out, “I might die, too!”<

I couldn’t shake the feeling that the plant had become a symbol of my own precarious health.

Solace and control

Identifying with the green and growing plant had offered me solace. Now that the tree was struggling, I felt increasingly fearful. Its shriveling leaves, I worried, might signal the recurrence of my brain tumor.

I realized I had wrongly connected my careful nurturing of the plant — something over which I had at least some control — with my own survival — something over which I had no control.

When my tumor inevitably returned, it would not be because of any failure on my part — not because I didn’t atomize essential oils in my office, not because I ate sugar occasionally and certainly not because I failed to keep this plant alive.

As my anxiety lessened, I began to pore over online tutorials to help me figure out how to care for my bamboo. Following the instructions, I transplanted the tree to a larger pot, untangling its roots to give it room to grow. When it was back in the sunny window, we both began to thrive again.

Whenever I look at the tree with its braided stalks in its new pot, I make a point to think of Mitch and the other people who have cared for and supported me. If the lucky bamboo outlives me, I hope it will comfort Hannah and remind her that our large community will continue to nurture her after I am gone.

Complete Article ↪HERE↩!

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‘A Last Act of Intimate Kindness’

I had barely seen my brother in decades, but when time was short, he let me in.

By Michelle Friedman

The message I had dreaded for years appeared on my phone: “Looking to find the sister of my patient, Jay Friedman.”

My ensuing phone conversation with the doctor brought ominous news. My 65-year-old brother, Jay, had advanced pancreatic cancer. He and I grew up together in Divine Corners, N.Y., a hamlet in the Catskills, raised by secular Holocaust survivor parents who stumbled into raising chickens. Their histories, coupled with the isolation and poverty of the farm, rendered my father brutal, especially to his only son.

I am the only family member with whom Jay maintained contact for the last three decades. Over that time, we communicated exclusively through email and cards I sent to a post office box. Despite working a quarter century in I.T. for the local school system, my brother did not own a cellphone. His doctor found my number via Google.

Jay was admitted to a fancy Seattle hospital where I called him via the landline next to his bed. His voice sounded weak, plaintive.

“Jay, I’ll come,” I said. “Let me be with you.”

“I don’t know,” he said. “My house is a mess.”

“I can stay in a hotel.”

“I’ll let you know.”

I panicked. I knew the prognosis was dire, but my brother’s lonely life cast an even darker shadow.

The hospital discharged Jay with a bag hanging from his chest to drain bile from his tumor-blocked liver. A few days later the doctor called again. Jay wanted my help.

I caught a flight to Seattle, picked up a rental car and drove around Puget Sound to a town in Kitsap County. Before entering Jay’s house, I muttered an ad hoc prayer for strength. Following the sounds of his weak voice through the maze of papers, boxes and computer parts, I found my brother lying on the couch. The disease had consumed him, leaving his body whittled, skeletal. Only Jay’s voice sounded familiar, a gravelly baritone.

“Thank you for coming,” he said. “I’m sorry I was snappy over the phone.”

The blanket wrapping my brother was full of holes. A brown crust covered his kitchen floor and counters. Jay drank tea with lemon in the one glass he possessed. Not owning a kettle, he boiled water in an old pot.

I brewed tea and baked a piece of chicken. After a few sips of liquid and child-size bites of food, Jay felt full. He slowly climbed the stairs to the single bed in his bedroom. The sheets hadn’t been changed in months. All I found in the closet was a cotton duvet cover that I recognized from the farm where we grew up. The faint smell of the detergent and crisp lines from our mother’s iron told me Jay had never used it.

Retreating to a Best Western hotel two miles away gave me guilty relief. It was no palace, but it was clean and orderly.

In the morning, the doctor outlined my brother’s stark medical options. Surgery was out. Jay could pursue radiation or chemotherapy, but neither was likely to yield much in terms of quantity or quality of life.

Jay made his choice in seconds — no aggressive medical intervention. The focus shifted to palliative care at home.

He didn’t have much time, weeks. How was I to start a conversation with him about his death? I knew he took pride in his money management and had saved a lot (though I had no idea then how surprisingly much), so that’s where I started.

“Jay, have you thought about what you want to do with your money?”

“Yes, I’ve thought about this a lot. I want to give it to Planned Parenthood.”

“All of it?”

“Yes.”

His calm answer startled and pleased me. Throughout our decades of sparse contact, Jay stayed vague when it came to his personal opinions.

“Jay, that’s amazing! How did you come to this decision?”

“There are too many people in the world, and I believe that people should have autonomy over their own bodies.”

I sat in silence thinking about my brother’s autonomy, the little boy overwhelmed by our rageful father, the awkward teenager who wanted to join the Navy to get away but lacked nerve. My practical mind kicked in. “Jay, do you know a lawyer?”

Once again, he surprised me. “Yeah. One of the teachers I know went to law school at night. He’s a good guy.”

Jay had no contact information for the lawyer, but I found him through the school. He answered my text within minutes and got to work preparing the necessary papers.

By the next day, Jay could no longer crawl up and down the stairs and spent most of his time in his bedroom. We moved the mattress to the floor in case he rolled off during the night. I pleaded with hospice to fast-track Jay onto their service, and soon a nurse arrived and taught me how to dose the medication: morphine for pain, Haldol for nausea and Lorazepam for anxiety. Each floated in a medicine-dropper-topped bottle so that liquid relief could be applied to the inside of the patient’s cheek.

Jay’s condition deteriorated quickly, and I no longer retreated to the Best Western. My first night in Jay’s house, I slept downstairs on the sofa. The next night, I worried that I wouldn’t hear his whimpers, so I moved to the floor next to his mattress. My younger brother’s vulnerability pierced me; he was the innocent little boy on the farm who trusted me. I cried, silently.

When he no longer ate or drank, I repurposed a medicine dropper to drip orange juice and seltzer onto his parched lips.

The lawyer met privately with Jay and later told me of his firm wish to be cremated.

A clutch grabbed my heart. Jewish law, which I follow, prohibits cremation. “Can I at least get Jay’s ashes so that I can bury them according to our faith?”

“Yes. I think that will be OK.”

“We haven’t talked about this, but I’m wondering if you are part of a religious tradition?”

“I am. The Church of Jesus Christ of Latter-day Saints.”

His answer bolstered me, given what I was about to request.

“Can I ask you one more favor?”

“Sure.”

“When the time comes, I want to do a Jewish ritual washing for Jay. It’s called a tahara. It means purification. I’ll need help; it’s too hard to do alone.”

“Of course. Call me when you need me.”

The days passed in a kind of waking dream. Jay talked on and off, disclosing struggles of all kinds. He liked hearing stories about Divine Corners, how we played in the snow and explored the brook behind the coops. I emptied his drainage bag and changed his adult diapers.

“This is disgusting,” he said.

“I’m fine,” I said. “I’m here for you. There’s nothing else I want to do.”

As our mother did when we had fevers as children, I gave Jay a sponge bath and changed his worn pajamas to a clean set.

Jay quietly slipped away. He told me that his dream was to buy a house on a lake with a few acres of land.

“That’s such a nice idea, Jay,” I said. “I love you.”

“I love you too.”

And then I made a plea I knew people have uttered for millenniums. “Send me a sign, Jay. Please send me a sign from the other side.”

Early Thursday morning I woke up inches from my brother to find him gone. No labored breathing, no death rattle. His skin had cooled, his limbs stiffened.

When the sky was fully lit, I called his friend, and we performed the tahara. We removed Jay’s pajamas, removed the drain and bag, all the while using a clean sheet to keep his frame covered and dignified. I repurposed the battered teapot to pour water over his body, starting with his head and moving to his feet. We toweled him dry, dressed him in long underwear and wrapped him in the duvet cover from our childhood farm. The work felt tender, holy, a last act of intimate kindness.

The mortuary people came and removed Jay’s body. At 6 o’clock I boarded the van for the airport. Only one other person got on, a white-haired woman in a sweater set. I saw that she bid a sorrowful farewell to the man seeing her off. She sat a few rows behind me. Drizzle and traffic caused delays, but our elfin driver navigated the trip and asked us which terminals we needed.

“American,” she said, turning mournfully in my direction. “It’s a sad trip. My brother is dying of brain cancer in Florida.”

“United,” I said, and to her: “I just left after taking care of my brother, who died this morning. I hope you get there in time.”

We reached across the aisle and held hands. Jay had made good on his sign.

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Ask Me About Death and Dying

— On the Work of Palliative Care

Anna DeForest Wrestles With the Calculus of Whether a Life Is Worth Living

By Anna DeForestIt has never been obvious to me that life is worth living. Throughout my medical training, where we have ample exposure to the tools of psychiatry, the taxonomy, I have considered that this disposition may be an illness, a disorder of mood or personality, or a maladaptation secondary to the traumas of my upbringing. But try as I might I cannot seem to be otherwise.

For almost a decade now my life has been in medical training, which is schooling that is also labor, for five years paid but the first four I paid for, and part of what they train us to do at these elite institutions is to be leaders in whatever fields we go into. We are made to practice giving academic talks, and whenever it is my turn, almost without meaning to I start talking about Rene Descartes, about thinking in relationship to being, about how wrong he was and how fucked up the world got, or I’ll talk about neuroscience and free will and confabulation, and I wonder if people with psychiatric illness feel the way I feel when I give these talks, the comforting grip of an ultimately ineffable concern.

The title of the training I have just wrapped up is Hospice and Palliative Medicine. Hospice means a roadside inn for pilgrims and indigent travelers. Palliative means more concerned with the experience than the reason it happened to occur. It is very important to the people who advocate for the field of palliative medicine, for its funding, legitimacy and worldwide integration into medical practice, that we always stress at every public opportunity that palliative care is for the living. Of course we are all of us dying, but their concern is worth a note. Because doctors care poorly for patients who are on the way out, and they wait too long to talk with the dying about death.

On the spectrum of death, unless you are to die instantly, in your sleep, say, or as my father did recently, in a chair in front of the television, so suddenly you do not even have time to rise, to try to get to a phone, so shocking and abrupt it can hardly register for you, the participant, the decedent, as having any quality, a good death requires a little bit of time—to rest, to reflect, to say the four things they say it helps to say: I am sorry, I forgive you, and the other two I forget. Hospice, though etymologically a place, is in modern usage a philosophy of care you can receive in your home or a nursing home or a hospital or anywhere, a team of nurses, doctors, social workers, chaplains and others who help you navigate the process of becoming dead.

Once on hospice, you stop receiving treatments that slow down the dying process and your care is focused on medications, practices and routines that can make your experience at the end of life less unpleasant. Palliative care, distinct from hospice, is a broader concern for anyone in a body enduring illness, a team performing symptom-focused assessments on anyone whose health is at times at odds with their quality of life.

Doctors care poorly for patients who are on the way out, and they wait too long to talk with the dying about death.The first person I ever saw die, and the second, and the third, were people in late age, their seventies or eighties, who died of cardiac arrests in the hospital. It goes like this: A call goes out overhead and a team comes at a run through the halls of the hospital, to where whoever found the patient pulseless is already over them, performing chest compressions. The body is stripped, legs and arms each a separate place, a project, someone placing a new line or stabbing for an arterial blood gas. The air fills with a tension you could tell yourself is excitement, although in tenor it is more like watching someone being arrested, surrounded, attacked. Every action argues for itself, right on the line of brutality.

Even before I saw all this, I often feared my heart would stop, mostly when it was night and I could not sleep. I would listen to my heart beat and beat, willing another, on and on and on. One of the unit physicians, when he learned I was not even enrolled yet, still in my first line of work, adjuncting in an English department, begged me to stay where I was. This job, he said, it eats your whole life, it is terrible. I can only guess what he meant, that his hours were long and his life and work not clearly delineated, that whatever he had imagined that his life would be like here, he had been wrong. The patients with heart failure were unfixable, noncompliant, always coming back.

Years later, I had finished medical school and was resident, training as a specialist in disorders of the brain. The patient was well-appearing, able-bodied, mid-fifties, a construction worker presenting with a few weeks of dizziness. An MRI showed small bright lesions all over his brain, a shower of metastasis. The word innumerable is never one you want to hear from a doctor. A pan CT showed the likely source of the mets, a large chest mass concerning for lung cancer. He had no idea, no other symptoms, just a little lightness in the head.

What does this mean, he asked, and his doctor, the attending physician who was my boss, told him he would have to wait, to see a number of specialists: the interventional radiologist, who would biopsy the lung mass; the medical oncologist, who would match the tissue sample to a course of chemotherapy; the surgeon, who would tell him his tumors are inoperable; the radiation oncologist, who would blitz his brain and chest with radiation.

He waited for days in bed as we coordinated the other doctors. The teams came and went, each saying its piece, in long speeches of words that made sense one by one but kept not adding up to anything. I had been taught not to tell him much, and it was true, we wouldn’t know the whole picture until after the biopsy, until the tissue was sent for tumor markers, and the treatment course sketched out. What I wonder, he said to me one afternoon when I was at the bedside, is why no one will just tell me that this is really bad.

One reason he never quit smoking was he was afraid of gaining weight. He didn’t want to get diabetes, which is the disease that killed his father around his same age. On the bloodwork we sent before his scans came back we found out that he had diabetes anyway. When I told him this, he laughed, and we shared the cannoli his wife brought in from their favorite Italian bakery. It is bad, I told him. It is really bad. He died, he did, a few months later.

As soon as there are choices to make, it is reasonable to talk about goals and values, because the math you do is about what makes your life worth living, what your life is not yours without.There is a stance that appears most in medical-school application essays that the purpose of medicine is to relieve human suffering, but it is truer to say, in Western medicine, that the goal is the prolongation of life. Nothing wrong with that, on its face, in some cases, though it may be reasonable to wonder, since everyone dies, what is the cumulative effect on medical practitioners, our hearts and heads, that we miss our goal in every case; a failure rate of one hundred percent.

But for you, for now, you have high blood pressure, high cholesterol, so take this pill to bring it down so that it doesn’t give you a stroke or kill you. If the cost is low and the benefit is high, the choice is clear, but in chronic illness and in life-limiting illness we find a need to add a little background math: this treatment, say it is whole-brain radiation, will prolong your life, and the cost of that prolongation is, say, aging your brain by forty years. This treatment, a percutaneous endogastric tube, will prolong your life but you will never be able to eat food by mouth again. As soon as there are choices to make, it is reasonable to talk about goals and values, because the math you do is about what makes your life worth living, what your life is not yours without. And this is the work that palliative care is about.

What is it, exactly, that you want me to do? The woman who was asking had metastatic cancer in her abdomen. Yesterday we told her that she had no options  left for treatment. With her permission we shared a prognosis of weeks to a few months. Her face didn’t move as the news broke. She looked off to the left at the wall. And someone gave the speech on the philosophy of hospice, and she shared a hope to go home. It is the next day, with the logistics all already in process, that she asks.

What am I supposed to say now, what am I supposed to be thinking about? I can’t tell you how everyone I meet feels about the things we tell them, though young in this work I have seen a few trends. And something I see a lot is people who feel that their lives got away from them, they were always just watching, as from the station looking at faces flicking by on a moving train, and what is left to them now in the time they have left is only fear and suffering of unclear significance. What do I do with a thing like that? I hear it, and I help where I can.

What I am always saying in my Descartes speech is that we are not what we think, but we become what we are doing. I am worried about what this means for the doctors. Whenever I am lost, I try to stop moving, in case I am running off again in the wrong direction. It is never too soon to sit down and map out our values, to consider if we want to end up in the place where we are going. No, not yet, we aren’t there yet, says the oncologist. This is just a bump in the road.

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A History of Present Illness by Anna DeForest is available now via Little, Brown.

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